MAKALAH RIVIEW JURNAL

ASUHAN PADA ANAK DAN PEREMPUAN DENGAN KONDISI RENTAN

“MASALAH DISABILITAS”

Dosen Pengampu : Retno Wulandari S.ST.,M.Keb

Nama Kelompok :
1. Afwa Nur Azizah R (SB19001)
2. Alya Olifa Z (SB19002)
3. Amanda Amalia (SB19003)
4. Angela Clara (SB19004)
5. Aqaz Rohqiati (SB19005)
6. Bella Putri Lathi (SB19007)

UNIVERSITAS KUSUMA HUSADA

FAKULTAS ILMU KESEHATAN
PROGRAM STUDI KEBIDANAN PROGRAM SARJANA DAN
PROGRAM STUDI PENDIDIKAN PROFESI BIDAN PROGRAM
PROFESI
2021/2022
 DAFTAR ISI

DAFTAR ISI ………………………………………………………… 2

BAB I PENDAHULUAN
1.1 Latar Belakang …………………………………………………….3
1.2 Tujuan ……………………………………………………………..3
BAB II ISI
2.1 Resume Jurnal …………………………………………………….4
2.2 Pembahasan ……………………………………………………… 9
BAB III PENUTUP
3.1 Kesimpulan ……………………………………………………… 13
3.2 Saran …………………………………………………………….. 13

DAFTAR PUSTAKA ……………………………………………….. 14

LAMPIRAN

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 BAB I
PENDAHULUAN

1.1 Latar Belakang

Pola-pola non inklusif masih sering ditemui pada pelayanan kesehatan
dasar di Indonesia, khususnya pada fasilitas kesehatan tingkat pertama (FKTP).
Bentuk layanan itu tidak dapat mengakomodir kebutuhan difabel terhadap
pelayanan kesehatan yang memadai. Kebutuhan seperti aksesibilitas fisik masih
belum tersedia dan dapat diakses oleh difabel yang membutuhkan pelayanan
kesehatan.
Hak-hak difabel dalam mengakses pelayanan kesehatan seringkali harus
berbenturan dengan kondisi difabel yang memang merupakan salah satu contoh
konkret dari keterbatasan fisik atau psikis yang seringkali berakibat pada
kurangnya penerimaan secara manusiawi. Keterbatasan yang ada pada difabel
seringkali menimbulkan efek penghargaan negatif dari lingkungan di sekitarnya.
Sikap masyarakat terhadap difabel hanya semata bersifat filantropis atau terbatas
pada sekedar rasa belas kasihan (Lowell, 2013). Hal itu memang dipengaruhi oleh
tingkat penghargaan yang sering diidentikkan dengan tanggung jawab sosial
dalam masyarakat, sehingga difabel tidak mendapat perlakuan yang selayaknya
(Kurniawan et al., 2014)
Berdasarkan undang-undang Republik Indonesia Nomor 8 Tahun 2016
tentang penyandang Disabilitas bagian kedelapan pasal 12 yang membahas
tentang hak kesehatan, Hak-hak tersebut belum dipenuhi secara maksimal oleh
YPAC karena keterbatasan dari sarana dan prasarana. Tujuan dari penyusunan
makalah ini adalah menganalisis upaya bidan dalam memberikan asuhan
kebidanan pada kasus kebutuhan khusus pada permasalahan fisik (Masalah
Disabilitas)

1.2 Tujuan
Tujuan penyusunan makalah dengan me-review jurnal atau artikel
riview ini untuk memenuhi tugas dari mata kuliah “Asuhan pada Anak dan
Perempuan dengan Kondisi Rentan” serta menjadi bahan untuk belajar bagi
penulis maupun pembaca dalam meningkatkan pengetahuan terkait kondisi rentan
klien pada lingkup kebidanan terutama pada Asuhan Kebidanan pada Masalah
Disabilitas yang akan dibahas pada makalah ini.

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 BAB II
ISI

2.1 Resume Jurnal

2.1.1 Maternity care experiences of women with physical disabilities: A

systematic review

A. Identitas Jurnal
Judul Maternity care experiences of women with physical
disabilities: A systematic review
Jurnal dan Volume Midwifery, Vol.96
DOI Jurnal https://doi.org/10.1016/j.midw.2021.102938
Download https://pubmed.ncbi.nlm.nih.gov/33636618/
Tahun 2021
Penulis • Mariëlle Heideveld-Gerritsena,
• Maartje van Vulpena,
• Martine Hollander,
• Sabine Oude Maatman,
• Henrietta Ockhuijsenb,
• Agnes van den Hoogenb
Riviewer Aqaz Rohqiati
Tanggal 26 Februari 2022

B. Latar Belakang
Di seluruh dunia, lebih dari satu miliar orang, atau lima belas persen
dari populasi dunia, memiliki beberapa jenis kecacatan (Organisasi
Kesehatan Dunia, 2011a; Organisasi Kesehatan Dunia dan Bank Dunia,
2011). Penyandang disabilitas termasuk minoritas terbesar kelompok
(Organisasi Kesehatan Dunia, 2018). Menurut Dunia Organisasi Kesehatan
(WHO), disabilitas adalah 'istilah umum, yang mencakup gangguan,
pembatasan aktivitas, dan pembatasan partisipasi. (Organisasi Kesehatan
Dunia, 2011b).
Kategori utama kecacatan adalah intelektual, kognitif, neurologis,
psikiatri, fisik dan sensorik. Dari jumlah tersebut, cacat fisik adalah yang
paling umum (Government of Western Australia Department of community
Disability Services, 2015). Cacat fisik dapat didefinisikan sebagai 'kehilangan
jangka panjang atau gangguan fungsi tubuh seseorang, yang mengakibatkan
mobilitas, daya tahan, ketangkasan, atau fungsi fisik terbatas' (GPII
DeveloperSpace, 2019). Cacat fisik disebut cacat sensorik jika: mereka
mempengaruhi penglihatan, ucapan, pendengaran atau bahasa (DomusVi,
2019).
Pernyataan WHO baru-baru ini menyerukan lebih banyak tindakan,
dialog, penelitian dan advokasi tentang perlakuan yang tidak sopan dan kasar
selama persalinan di fasilitas di seluruh dunia dan telah meluncurkan program
untuk mempromosikan kesehatan reproduksi di antara orang-orang cacat
(Organisasi Kesehatan Dunia, 2015, 2009). Pada 2015, Tarasoff menerbitkan

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 tinjauan literaturmpada pengalaman perawatan perinatal wanita dengan cacat
fisik (Tarasoff, 2015). Menurut tinjauan ini, perempuan penyandang
disabilitas fisik mengalami hambatan sikap dan kurangnya pengetahuan
tentang disabilitas dari penyedia layanan kesehatan. Selain itu, hambatan fisik
seperti: seperti meja pemeriksaan yang tidak dapat diakses, ruang bersalin
dan tempat tidur dilaporkan (Tarasoff, 2015). Namun, belum ada tinjauan
sistematis penelitian kualitatif mengenai pengalaman perawatan bersalin
wanita penyandang disabilitas fisik, termasuk disabilitas sensorik seperti
penurunan nilai.
Untuk meningkatkan pengalaman perawatan, yang akibatnya dapat
meningkatkan hasil ibu dan bayi, perlu untuk menghilangkan hambatan
dalam perawatan bersalin untuk wanita hamil dengan disabilitas (Clements et
al., 2016; Tarasoff, 2015). Oleh karena itu direkomendasikan untuk
melakukan tinjauan sistematis mengenai pengalaman perempuan penyandang
disabilitas dalam bersalin perawatan dan apa yang wanita ini temui untuk
meningkatkan pengalaman mereka.
Ulasan ini menjelaskan pengalaman yang sering dilaporkan untuk
mengatasi ini hambatan dalam praktek klinis. Temuan yang disintesis dapat
digunakan untuk menginformasikan kebijakan atau praktik perawatan
kesehatan untuk meningkatkan kualitas persalinan peduli. Tujuan dari
tinjauan ini adalah untuk mengidentifikasi dan memberikan gambaran tentang
pengalaman yang dilaporkan dari wanita penyandang cacat fisik, termasuk
cacat sensorik, tentang perawatan bersalin.

C. Tujuan Penelitian
Tujuan dari tinjauan sistematis ini adalah untuk mengidentifikasi dan
memberikan gambaran tentang pengalaman perawatan bersalin yang
dilaporkanm perempuan penyandang disabilitas fisik, termasuk disabilitas
sensorik.

D. Metode Penelitian
Systematic Review ini dilakukan dengan menggunakan pendekatan
meta-agregasi untuk sintesis dan langkah-langkahnya dari pernyataan Item
Pelaporan Pilihan untuk Tinjauan Sistematis dan Meta-Analisis (PRISMA).
Pencarian strategi difokuskan pada studi kualitatif di database PubMed,
Embase dan CINAHL. Keterampilan penilaian kritis yang digunakan adalah
Daftar periksa program untuk mengevaluasi kualitas metodologi, dan sintesis
bukti terbaik dilakukan.

E. Hasil Penelitian
Hasil penelitian menunjukkan bahwa perempuan mengalami hambatan
terkait aksesibilitas fasilitas, peralatan yang disesuaikan, kurangnya
pengetahuan, dan penolakan penyedia layanan kesehatan atas kekhawatiran
dan keengganan mereka untuk membantu. Sebaliknya, dukungan memiliki
pengaruh positif pada pengalaman perempuan.

F. Kesimpulan
Ada bukti bahwa perempuan penyandang disabilitas fisik terus
menghadapi hambatan dalam mengakses perawatan bersalin terkait dengan
pengaturan perawatan yang tidak dapat diakses, kurangnya pengetahuan dan

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 sikap penyedia layanan kesehatan. Penyedia layanan kesehatan harus dilatih
untuk menyadari kebutuhan khusus perempuan dan untuk meningkatkan
praktik klinis.
2.1.2 Access to, and experiences of, maternity care for women with physical
disabilities: A scoping review

A. Identitas Jurnal
Judul Access to, and experiences of, maternity care for women
with physical disabilities: A scoping review
Jurnal dan Volume Midwife, Vol.107
DOI Jurnal https://doi.org/10.1016/j.midw.2022.103273
Tahun 2022
Penulis Amanda Blair, Jenny Cao, Alyce Wilson, Caroline Homer
Riviewer Amanda Amalia dan Angela Clara
Tanggal 26 Februari 2022

B. Latar Belakang
Akses ke, dan pengalaman, perawatan bersalin untuk wanita dengan
cacat fisik adalah topik yang meningkatkan minat dan kepentingan karena
jumlah kehamilan dan kelahiran dalam kelompok populasi ini meningkat
(Iezzoni et al., 2015a; Tarasoff et al., 2020). Diperkirakan bahwa 12,6%
wanita berusia 15 hingga 59 tahun di negara-negara berpenghasilan tinggi
hidup dengan cacat sedang atau berat (Organisasi Kesehatan Dunia, 2011)
dan diperkirakan bahwa 9,4% wanita di Inggris yang baru saja melahirkan
memiliki satu atau lebih kondisi yang menyebabkan kecacatan (Šumilo et al.,
2012 ). Peningkatan kejadian kehamilan bagi wanita penyandang cacat
dianggap sebagai hasil dari peningkatan penerimaan masyarakat terhadap
penyandang cacat, peningkatan kesadaran seksualitas pada penyandang cacat,
berkurangnya praktik sterilisasi paksa, dan peningkatan, dan akses ke,
teknologi reproduksi bantu (Iezzoni et al., 2013).
Model sosial kecacatan mendukung menciptakan lingkungan dan
masyarakat yang akomodatif yang lebih mendukung kebutuhan individu
dengan gangguan. Untuk perbaikan dalam perawatan, sangat penting bahwa
hambatan yang dihadapi oleh wanita dengan cacat fisik dalam mengakses
perawatan bersalin yang aman dan berkualitas tinggi diidentifikasi dan
dipahami. Di bawah Piagam Hak Universal Perempuan Melahirkan Anak,
semua wanita subur memiliki hak untuk mengakses perawatan bersalin yang
aman, adil, berkualitas tinggi dan diperlakukan dengan bermartabat dan
hormat di semua pengalaman kehamilan dan melahirkan (White Ribbon
Alliance, 2011. Semua dimensi akses (aksesibilitas, keterjangkauan,
ketersediaan, akomodasi dan penerimaan) memiliki potensi untuk
mempengaruhi pengalaman perempuan tentang perawatan bersalin dan
individu yang termasuk dalam satu atau lebih kelompok minoritas termasuk
kecacatan cenderung menghadapi hambatan tambahan dalam mengakses
perawatan dan memiliki pengalaman perawatan positif (Penchansky dan
Thomas, 1981; Peterson-Besse et al., 2014; Organisasi Kesehatan Dunia ,
2020).
Pemahaman tentang pengalaman perempuan penyandang cacat dalam
mengakses perawatan bersalin penting untuk memastikan kebutuhan para
wanita ini terpenuhi. Nguyen et al. (2019) baru-baru ini mengeksplorasi

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 pengalaman dan tantangan yang dihadapi oleh wanita penyandang cacat fisik
dalam mengakses perawatan bersalin di negara-negara berpenghasilan rendah
dan menengah, namun, belum ada tinjauan di negara-negara berpenghasilan
tinggi selama beberapa tahun. Tinjauan terbaru yang mencakup negara-
negara bagian dari Organisasi untuk Kerjasama Ekonomi dan Pembangunan
(OECD) diterbitkan pada tahun 2013 (Lawler et al., 2013).

C. Tujuan Penelitian
Untuk mengeksplorasi bukti terbaru mengenai akses ke, dan
pengalaman, bersalin merawat wanita penyandang cacat fisik di negara-
negara berpenghasilan tinggi.

D. Metode Penelitian
Tinjauan pelingkupan dilakukan sebagaimana dipandu oleh Item
Pelaporan Pilihan untuk Tinjauan Sistematis ekstensi dan untuk tinjauan
pelingkupan (PRISMA-ScR).
Sebuah pencarian sistematis dari lima database online diidentifikasi
artikel relevan yang diterbitkan dalam bahasa Inggris dari tahun 2000 hingga
2020. Daftar referensi dari studi yang disertakan juga disaring, dan kualitas
dinilai menggunakan Daftar Periksa Joanna Briggs Institute. Sebuah sintesis
tematik dilakukan untuk mengembangkan tema deskriptif dan analitis.

E. Hasil
Setelah penyaringan, 27 artikel dari delapan negara berpenghasilan
tinggi dimasukkan. Semua artikel diidentifikasi memiliki kekakuan
metodologis sedang atau tinggi dalam penilaian kualitas. Wanita penyandang
disabilitas fisik melaporkan banyak hambatan dalam mengakses perawatan
bersalin dan menggambarkan pengalaman perawatan yang didominasi
campuran dan negatif. Temuan ini dikelompokkan dalam tiga tema utama:
perempuan penyandang disabilitas menginginkan pengalaman kehamilan
yang “normal”; kebutuhan untuk memperkuat pengetahuan dan keterampilan
disabilitas penyedia bersalin; dan mempromosikan lingkungan yang
memungkinkan untuk meningkatkan akses ke, dan pengalaman, perawatan
bersalin.

F. Kesimpulan
Tinjauan ini menemukan bahwa akses dan pengalaman perempuan
penyandang disabilitas fisik ke perawatan bersalin kurang optimal. Perlu
meningkatkan pengetahuan dan kesadaran penyandang disabilitas penyedia
bersalin, meningkatkan ketersediaan layanan dukungan bagi perempuan, dan
meningkatkan perawatan yang berpusat pada orang melalui kebijakan
organisasi dan pelatihan penyedia dapat membantu mengatasi ketidaksetaraan
yang dihadapi perempuan penyandang disabilitas dalam mengakses
perawatan bersalin berkualitas tinggi

2.1.3 Women with disability: the experience of maternity care during pregnancy,
labour and birth and the postnatal period

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A. Identitas Jurnal
Judul Women with disability: the experience of maternity care
during pregnancy, labour and birth and the postnatal period
Jurnal BMC Pregnancy and Childbirth, 13 / 174
Download http://www.biomedcentral.com/1471-2393/13/174
Tahun 2013
Penulis Maggie Redshaw* , Reem Malouf, Haiyan Gao dan Ron
Gray
Riviewer Alya Olifa dan Angela Clara
Tanggal 26 Februari 2022

B. Latar Belakang
semakin banyak bukti menunjukkan bahwa penyandang disabilitas di
umumnya memiliki tingkat kesehatan yang lebih buruk, pendidikan yang
lebih rendah prestasi dan tingkat pengangguran yang lebih tinggi daripada
rekan-rekan non-cacat mereka.
Disabilitas bisa fisik, mental, sensorik, atau melibatkan
ketidakmampuan belajar, mungkin baru atau jangka panjang, progresif atau
stabil dan perlu dipertimbangkan dalam hal implikasi fisik dan dalam
kaitannya dengan kemampuan koping wanita dan orang-orang dari
keluarganya. Banyak perempuan disabilitas yang berhasil menjadi ibu dan
melahirkan bayi yang sehat Namun, hambatan dalam akses ke penyedia
layanan kesehatan dan fasilitas memiliki telah dilaporkan untuk banyak
wanita dengan cacat fisik. Tingginya tingkat aborsi, keguguran, operasi
Caesar bagian, dan penggunaan kontrasepsi yang rendah ditemukan disurvei
yang melibatkan 410 perempuan cacat fisik yang dilakukan di Korea Selatan
Peningkatan risiko yang merugikan hasil kehamilan telah dicatat pada
wanita dengan beberapa penyakit kronis, seperti rheumatoid arthritis dan
skizofrenia . Misalnya, proporsi kelahiran rendah yang lebih tinggi berat
badan (BBLR) bayi (11,8% vs 6,8%) telah dilaporkan untuk anak dari ibu
dengan skizofrenia dibandingkan dengan ibu lainnya.
Rekomendasi dari Pedoman Perawatan Antenatal NICE Inggris saat ini
adalah bahwa semua wanita hamil harus mengakses pelayanan kesehatan
sejak dini. Secara umum, orang dengan disabilitas mungkin menghadapi
tantangan yang cukup besar dalam mengakses pelayanan kesehatan.

C. Tujuan Penelitian
Dalam analisis sekunder ini, dari data survei berbasis populasi, adalah
untuk mendapatkan gambaran penggunaan dan pengalaman perawatan
bersalin wanita penyandang disabilitas baru-baru ini dan untuk lebih
memahami masalah yang timbul dengan berbagai jenis disabilitas.

D. Metode Penelitian
Analisis sekunder data dari survei wanita pada tahun 2010 oleh English
National Health Service Trusts pada atas nama Komisi Kualitas Perawatan
dilakukan. 144 trust di Inggris mengambil bagian dalam survei pos. Wanita
yang diidentifikasi sendiri dengan cacat dan dikecualikan jika berusia kurang
dari 16 tahun atau jika bayi mereka telah meninggal. Kuesioner terstruktur 12
halaman dengan bagian tentang antenatal, persalinan dan kelahiran dan
perawatan pascanatal mencakup akses,informasi, komunikasi dan pilihan.

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 Analisis deskriptif dan disesuaikan dibandingkan dinonaktifkan dan non-
cacat Kelompok. Perbandingan dibuat secara terpisah untuk lima
subkelompok disabilitas: cacat fisik, gangguan sensorik, kondisi kesehatan
mental, ketidakmampuan belajar dan wanita dengan lebih dari satu jenis
kecacatan.

E. Hasil
Wanita cacat terdiri dari 6,14% (1.482) dari total sampel (24.155) dan
tampaknya menggunakan bersalin. layanan lebih dari wanita non-cacat.
Sebagian besar positif tentang perawatan mereka dan melaporkan akses yang
cukup dan keterlibatan, tetapi lebih kecil kemungkinannya untuk menyusui.
Pengalaman wanita dengan berbagai jenis kecacatan bervariasi: wanita cacat
fisik lebih banyak menggunakan layanan antenatal dan postnatal, tetapi lebih
sedikit pilihan tentang persalinan dan kelahiran; pengalaman mereka yang
memiliki gangguan sensorik sedikit berbeda dari wanita non-cacat, tetapi
mereka lebih mungkin bertemu staf sebelum persalinan; wanita dengan cacat
kesehatan mental juga menggunakan layanan lebih banyak, tetapi lebih kritis
terhadap komunikasi dan dukungan; wanita dengan ketidakmampuan belajar
dan mereka yang memiliki banyak cacat paling tidak mungkin melaporkan
pengalaman positif perawatan bersalin.

F. Kesimpulan
Wanita dengan disabilitas telah sampai batas tertentu populasi tak
terlihat dalam populasi bersalin yang lebih luas. Diharapkan bahwa penelitian
ini akan memberikan bukti untuk mendukung perbaikan perawatan. Temuan
ini akan berkontribusi untuk layanan bersalin lebih memuaskan menunjuk
tindakan yang diperlukan dalam merawat wanita hamil dengan berbagai jenis
kecacatan dan staf pelatihan untuk mendukung wanita dengan berbagai
kondisi.

2.2 Pembahasan
Upaya bidan dalam memberikan asuhan pada mereka penyandang
disabilitas
Orang Disabilitas (orang berkebutuhan khusus) adalah orang yang
hidup dengan karakteristik khusus dan memiliki perbedaan dengan orang pada
umumnya. Karena karakteristik yang berbeda inilah memerlukan pelayanan
khusus agar dia mendapatkan hak-haknya sebagai manusia yang hidup dimuka
bumi ini. Orang berkebutuhan khusus memiliki definisi yang sangat luas,
mencakup orang-orang yang memiliki cacat fisik, kemampan IQ (Intelligence
Quotient) rendah, serta orang dengan permasalahan sangat kompleks sehingga
fungsi-fungsi kognitifnya mengalami gangguan (Reefani, 2013). Penyandang
Disabilitas adalah setiap orang yang mengalami keterbatasan fisik, intelektual,
mental dan atau sensorik dalam jangka waktu lamayang dalam berinteraksi
dengan lingkungan dapat mengalami hambatan dan kesulitan untuk berpartisipasi
secara penuh dan efektif dengan warga negara lainnya berdasarkan kesamaan hak
(Undang-undang RI, 2016)
Undang-undang Republik Indonesia Nomor 8 Tahun 2016 Tentang
Disabilitas menjelaskan Pada pasal 4 disebutkan ragam penyandang disabilitas
meliputi : Disabilitas fisik, intelektual, mental dan atau sensorik. Sedangkan pada
pasal 5 bagian kesatu disebutkan penyandang Disabilitas memiliki hak: hidup,

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bebas dari stigma, privasi, keadilan dan perlindungan hukum, pendidikan,
pekerjaan, kewirausahaan dan koperasi, kesehatan, politik dan keagamaan.
Sekitar 15% dari seluruh penduduk dunia pada saat ini adalah
menyandang disabilitas, 2-4% diantaranya mengalami permasalahan fisik yang
signifikan (WHO, 2011). Riskesdas 2018 menunjukkan proporsi disabilitas pada
umur 5 -17 tahun sebesar 3,3 % dan pada umur 18-59 tahun sebesar 22%. Pada
umur 60 tahun ke atas 2,6% mengalami disabilitas berat dan ketergantungan
total. Sedangkan untuk kejadian cedera di jalan raya mengalami penurunan dari
42,8% (Riskesdas 2013) menjadi 31,4% (Litbangkes, 2019). Sedangkan sumber
lain menyebutkan bahwa jumlah penyandang cacat di Indonesia mencapai 7,8
juta jiwa (Firdaus and Iswahyudi, 2010). Institue for Health Metrics and
Evaluation (IHME) menyebutkan perubahan masalah kesehatan yang
menyebabkan disabilitas dari tahun 2007 – 2017 (IHME, n.d.). Pada faktanya,
dari 10 besar masalah kesehatan yang disampaikan tersebut, keseluruhannya
dapat tertangani pada fasilitas kesehatan dasar di Indonesia. Tapi meskipun dapat
teratasi, persoalan difabel tampaknya masih kurang menarik dibandingkan
dengan masalah-masalah sosial yang lain. Hal ini dapat dilihat pada kurangnya
dukungan sarana umum, termasuk pelayanan kesehatan yang dapat diakses oleh
difabel (Irwanto, 2010). Terbatasnya kebijakan kesehatan yang mendukung kaum
difabel disertai dengan kurangnya sosialisasi sehingga program kurang dapat
dimanfaatkan oleh para difabel (Durham et al., 2014).
Pada ulasan ketiga jurnal internasional tadi bisa kita tarik kesimpulan
bahwa memang bagi penyandang disabilitas dinegara manapun bukan hanya
diindonesia mengalami kesulitan terutama pada bidang kesehatan.
Bidan tentu saja ikut andil dalam hal ini, karena permasalahan menjadi
semakin kompleks, mengingat bidan menangani klien perempuan. Yang bila
mana perempuan tersebut mengalami masalah disabilitas, mereka perempuan
akan mengalami stigmatisasi ganda, yaitu sebagai perempuan, dan juga sebagai
disabilitas. Sehingga kelompok ini perlu untuk mendapat perhatian khusus karena
sangat rentan mengalami berbagai bentuk kekerasan dan diskriminasi terutama
berkaitan dengan seksualitas dan kesehatan reproduksi.
Lalu bagaimana upaya bidan dalam melakukan asuhan kepada mereka
perempuan dengan masalah disabilitas khususnya kekurangan fisik untuk
meningkatkan pelayananya. Dari buku Pedoman Pelaksanaan Pelayanan
Kesehatan Reproduksi bagi Penyandang Disabilitas Usia Dewasa tahun 2017 dari
Kemenkes RI menyebutkan jika Kondisi fisik yang tidak lengkap atau tidak
berfungsi pada penyandang disabilitas fisik menyebabkan mereka rentan
terhadap tidak diberikannya pelayanan kesehatan sesuai standar, khususnya
pengukuran, pemeriksaan fisik, dan pemeriksaan penunjang yang melibatkan
anggota gerak (lengan dan tungkai). Selain itu, kondisi infrastruktur (jalan,
transportasi publik, tata ruang fasilitas pelayanan kesehatan) yang tidak sesuai
standar dapat menyulitkan penyandang disabilitas fisik yang bergantung pada
alat bantu gerak (misal kursi roda, tongkat, prostesis). Untuk itu perlu dipastikan
pelayanan kesehatan reproduksi yang ramah terhadap penyandang disabilitas
fisik, melalui:
1) Keterbatasan penyandang disabilitas fisik dalam menjangkau fasyankes dapat
dilakukan solusi berupa alternatif kunjungan rumah petugas ke penyandang
disabilitas (home visit) untuk menyampaikan KIE kesehatan reproduksi
kepada penyandang disabilitas serta keluarga/pendamping.

10
2) Penyediaan infrastruktur fasyankes yang mudah diakses oleh penyandang
disabilitas, termasuk penyandang disabilitas fisik yang bergantung pada alat
bantu. Contoh:
• Penyediaan ram
• Penyediaan pegangan rambat (hand rail)
• Pintu utama memiliki lebar minimal 80-90 cm
• Penyediaan toilet dengan kloset duduk dan shower
3) Penyediaan berbagai alat kesehatan yang dapat digunakan oleh tenaga
kesehatan untuk melakukan pengukuran/pemeriksaan kesehatan bagi
penyandang disabilitas fisik. Contoh:
• Timbangan berat badan untuk pengguna kursi roda
• Termometer elektrik yang ditempel telinga/dahi
• Cuff tensimeter ukuran besar
4) Peningkatan kapasitas tenaga kesehatan dalam memahami dan melakukan
pengukuran/pemeriksaan kesehatan bagi penyandang disabilitas fisik,
mengingat terdapat beberapa alternatif pengukuran/pemeriksaan yang
berbeda. Contoh:
• Pengukuran antropometri
• Pengambilan spesimen darah untuk pemeriksaan penunjang

Tata Cara Berinteraksi Dengan Klien Penyandang Disabilitas :

1) Informasi dasar:
• Bertanyalah sebelum membantu
• Jangan berasumsi
• Berikan rasa hormat (respect)
2) Cara berinteraksi :
• Tetaplah berjabat tangan, sekalipun tangan klien sulit digerakkan atau
diamputasi. Fokuslah pada manusianya, bukan pada kondisi fisiknya.
• Jika Anda ingin menawarkan bantuan, lakukanlah dengan santun.
Contoh: ”Apakah ada yang bisa saya bantu?”, dan bukan: “Sebaiknya
saya bantu Anda”.
• Setelah Anda bertanya untuk memberikan bantuan, tunggulah jawaban
atau respon klien. Bantuan Anda belum tentu diinginkan atau
dibutuhkan. Siapkanlah diri Anda untuk mendengar kata “Tidak
• Posisikan mata Anda sejajar dengan mata pengguna kursi roda saat
Anda akan berbicara. Duduk, berjongkok, atau berlutut sebagai bentuk
rasa hormat (respect).
• Hindari bersandar atau bertahan di kursi roda seseorang. Ingatlah
bahwa pengguna kursi roda menganggap kursi roda mereka sebagai
bagian dari tubuh.
• Hindari memindahkan alat bantu mobilitas seperti tongkat, kruk, atau
kursi roda, kecuali Anda diminta oleh klien untuk melakukannya. Jika
diminta, pindahkan alat mobilitas dalam jangkauan klien.
• Hindari meraih atau menggandeng tangan pengguna tongkat atau kruk.
Mereka memerlukan tangan untuk keseimbangan diri.
• Berbicaralah secara langsung kepada penyandang disabilitasnya, dan
bukan kepada keluarga/pendampingnya. Namun Anda dapat
melibatkan keluarga/pendampingnya dalam percakapan.

11
 • Jika tempat pelayanan (misal: tempat tidur atau kursi) terlalu tinggi
bagi penyandang disabilitas fisik, maka sesuaikanlah untuk dapat
memberikan layanan. Buatlah mereka nyaman dengan layanan Anda.

Sebenarnya, Standar pelayanan kesehatan reproduksi pada penyandang

disabilitas sama seperti standar pelayanan kesehatan reproduksi pada non
disabilitas. Hal yang berbeda yaitu adanya beberapa penyesuaian yang harus
dilakukan dalam pemberian pelayanan misalnya cara berinteraksi, teknik
pengukuran dan teknik pemeriksaan yang perlu disesuaikan dengan kondisi
ragam disabilitas.

12
 BAB III
PENUTUP

3.1 Kesimpulan
Difabel memiliki hak yang sama sebagai warga negara, salah satunya
adalah hak untuk mengakses pelayanan kesehatan. Pelayanan kesehatan bagi
disabilitas membutuhkan dukungan yang lebih dibandingkan dengan pelayanan
kesehatan bagi para non-disabilitas. Dalam hal kebutuhan dalam upaya pelayanan
kesehatan, para difabel menyatakan perlunya penambahan fasilitas aksesibilitas
fisik pada fasilitas kesehatan dan jaminan pembiayaan kesehatan. Pelaksanaan
pelayanan kesehatan bagi penyandang disabilitas dilakukan melalui upaya
komprehensif dari aspek promotif, preventif hingga aspek kuratif dan
rehabilitatif. Pelayanan tersebut berlaku untuk semua jenis ragam penyandang
disabilitas baik sensorik, fisik, intelektual dan mental dengan cara pemberian
pelayanan yang disesuaikan untuk setiap ragam disabilitas. Hal ini dimaksudkan
agar para penyandang disabilitas tetap mendapatkan haknya dalam memperoleh
pelayanan kesehatan terutama perempuan dengan masalah disabilitas.

3.2 Saran
Dari penyusunan makalah ini diharapkan penulis harus berusaha lebih
untuk melengkapi materi dari segi aspek keilmuan yang lain untuk menambah
referensi dan pemahaman tentang bagaimana upaya bidan dalam memberikan
asuhan kepada perempuan dengan masalah disabilitas.

13
 DAFTAR PUSTAKA

Blair, A. et al. (2022) ‘Access to, and experiences of, maternity care for women
with physical disabilities: A scoping review’, Midwifery, 107, p. 103273.
doi: 10.1016/j.midw.2022.103273.
Durham, J., Brolan, C.E., Mukandi, B., 2014. The Convention on the Rights of
Persons With Disabilities: A Foundation for Ethical Disability and
Health Research in Developing Countries. American Journal of Public
Health 104, 2037–2043.
Heideveld-Gerritsen M, van Vulpen M, Hollander M, Oude Maatman S,
Ockhuijsen H, van den Hoogen A. Maternity care experiences of women
with physical disabilities: A systematic review. Midwifery. 2021
May;96:102938. doi: 10.1016/j.midw.2021.102938. Epub 2021 Feb 10.
PMID: 33636618.
Kementerian Kesehatan RI. 2017. Pedoman Pelaksanaan Pelayanan Kesehatan
Reproduksi bagi Penyandang Disabilitas Usia Dewasa. Jakarta:
Kementerian Kesehatan RI.
Kurniawan, A., Angkasawati, T.J., Kusumawardani, A., RI, K.K., 2014. Akses
Pelayanan Kesehatan yang RamahDifabel. Pusat Humaniora, Kebijakan
Kesehatan dan Pemberdayaan Masyarakat, Surabaya, Indonesia
Lowell, A., 2013. “From your own thinking you can’t help us”: Intercultural
collaboration to address inequities in services for Indigenous Australians
in response to the World Report on Disability. INTERNATIONAL
JOURNAL OF SPEECH-LANGUAGE PATHOLOGY 15, 101–105.
Litbangkes, 2019. Laporan Nasional Riset Kesehatan Dasar 2018.
Redshaw, M. et al. (2013) ‘Disability in Pregnancy Womens Experience’, BMC
Pregnancy and Childbirth, 13, p. 174.
Reefani, N. K. (2013). Panduan Anak Berkebutuhan Khusus. Yogyakarta:
Imperium.
Undang-Undang RI. (2016). Undang-undang RI No 8 Tahun 2016 tentang
Penyandang Disabilitas. Th. 2016.pdf

14
LAMPIRAN

15
 Midwifery 96 (2021) 102938

Contents lists available at ScienceDirect

Midwifery
journal homepage: www.elsevier.com/locate/midw

Review Article

Maternity care experiences of women with physical disabilities: A

systematic review
Mariëlle Heideveld-Gerritsen a,b,∗, Maartje van Vulpen a,b, Martine Hollander a, Sabine Oude
Maatman c, Henrietta Ockhuijsen b,c, Agnes van den Hoogen b,c
a
Radboud University Medical Center, Post Office Box 9101, 6500 HB Nijmegen, the Netherlands
b
Utrecht University, Post Office Box 80125, 3508 TC Utrecht, the Netherlands
c
University Medical Center Utrecht, Post Office Box 85500, 3508 GA Utrecht, the Netherlands

a r t i c l e i n f o a b s t r a c t

Keywords: Objective: Fifteen percent of the world’s population has some form of disability, the most common form being
Physically disabled a physical disability. Ten percent of women with disabilities are of childbearing age; however, because women
Maternity with disabilities are often deemed less likely to have children, accessibility to maternity care is limited. Women
Experience
with disabilities experience problems during pregnancy and childbirth due to physical barriers and barriers to
information, problems with communication and the attitude of providers. A recent World Health Organization
statement calls for more action, dialogue, research and advocacy on disrespectful treatment during childbirth. To
give substance to this, an overview of the experiences of women with a physical disability is essential. Therefore,
the aim of this systematic review is to identify and provide an overview of reported maternity care experiences
of women with physical disabilities, including sensory disabilities.
Design: This systematic review was conducted using a meta-aggregation approach for synthesis and the steps
of the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) statement. The search
strategy focused on qualitative studies in the databases PubMed, Embase and CINAHL. The Critical Appraisal Skills
Programme checklist was used to evaluate methodological quality, and a best-evidence synthesis was performed.
Findings: Of the 4,486 studies screened, ten were included. The methodological quality of the studies ranged
from high to moderate. The results indicated that women experience barriers related to accessibility of facilities,
adapted equipment, lack of knowledge, and healthcare providers’ dismissals of their concerns and unwillingness
to assist. In contrast, support has a positive influence on women’s experiences.
Key conclusions and implications for practice: There is evidence that women with physical disabilities continue to
encounter barriers in accessing maternity care related to inaccessible care settings, lack of knowledge and the
attitude of healthcare providers. Healthcare providers should be trained to be aware of women’s special needs
and to improve clinical practice.

Introduction (World Health Organization, 2011b). The main categories of dis-

Worldwide, more than one billion people, or fifteen per-
cent of the world’s population, have some type of disability
(World Health Organization, 2011a; World Health Organization and
World Bank, 2011). Disabled people belong to the largest minority
group (World Health Organization, 2018). According to the World
Health Organization (WHO), disabilities are ‘an umbrella term, cov-
ering impairments, activity limitations and participation restrictions’
abilities are intellectual, cognitive, neurological, psychiatric, physi-
cal and sensory. Of these, physical disabilities are the most common
(Government of Western Australia Department of communities Disabil-
ity Services, 2015). A physical disability can be defined as ‘a long-
term loss or impairment of a person’s body function, resulting in lim-
ited mobility, endurance, dexterity or physical function’ (GPII Develop-
erSpace, 2019). Physical disabilities are known as sensory disabilities if
they affect sight, speech, hearing or language (DomusVi, 2019).

∗
Corresponding author at: Division Perinatology, Obstetrics. Radboud University Medical Center, Post Office Box 9101, 6500 HB Nijmegen, the Netherlands.
E-mail addresses: marielle.heideveld-gerritsen@radboudumc.nl (M. Heideveld-Gerritsen), maartje.dekat-vanvulpen@radboudumc.nl (M. van Vulpen),
martine.hollander@radboudumc.nl (M. Hollander), s.m.oudemaatman@umcutrecht.nl (S. Oude Maatman), h.d.l.ockhuysen@umcutrecht.nl (H. Ockhuijsen),
ahoogen@umcutrecht.nl (A. van den Hoogen).

https://doi.org/10.1016/j.midw.2021.102938
Received 12 February 2020; Received in revised form 27 January 2021; Accepted 2 February 2021
0266-6138/© 2021 The Authors. Published by Elsevier Ltd. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/)
M. Heideveld-Gerritsen, M. van Vulpen, M. Hollander et al.
Ten percent of women with disabilities are of childbearing age;
however, they are often assumed to not be sexually active and less
likely to have children (Ahumuza et al., 2014; World Health Organi-
zation and World Bank, 2011). This perception has led to limited access
by women with disabilities to sexual and reproductive health services
(Ahumuza et al., 2014; Morrison et al., 2014). While the precise preva-
lence of pregnancy among women with physical disabilities is unknown,
it is not insignificant, and is likely to increase (Iezzoni et al., 2013). With
increased community involvement, medical advances, and the recogni-
tion of the reproductive rights of people with disabilities, women with
disabilities have increased opportunities for childbirth (“Americans with
disabilities act of 1990, as amended,” 2008; Hendriks, 2007).
However, women with disabilities experience problems during preg-
nancy and childbirth due to physical barriers, lack of specialised ser-
vices, problems with the healthcare system and barriers to infor-
mation, problems with communication and the attitude of providers
(Scheer et al., 2008; Schopp et al., 2002). The attitudes and behaviours
of maternity care providers may directly affect the well-being of patients
and the relationship between patients and providers (World Health Or-
ganization, 2005). Maternity care can be defined as ‘the constellation
of health services provided by a physician, nurse, midwife, hospital or
birthing centre to a pregnant woman during pregnancy (prenatal care),
delivery, and after delivery (postnatal care)’ (Segen’s Medical Dictio-
nary, 2011). Lack of respectful care from these providers may lead to
dissatisfaction with the healthcare system and decrease the likelihood
of seeking maternity care (World Health Organization, 2005).
A recent WHO statement calls for more action, dialogue, research
and advocacy on disrespectful and abusive treatment during childbirth
in facilities around the world and has launched a program to pro-
mote reproductive health among disabled people (World Health Orga-
nization, 2015, 2009). In 2015, Tarasoff published a literature review
on the perinatal care experiences of women with physical disabilities
(Tarasoff, 2015). According to this review, women with physical dis-
abilities experience attitudinal barriers and lack of knowledge on dis-
abilities from healthcare providers. Furthermore, physical barriers such
as inaccessible examination tables, delivery rooms and beds are reported
(Tarasoff, 2015). However, there has been no systematic review of qual-
itative research concerning the maternity care experiences of women
with physical disabilities, including sensory disabilities such as visual
impairment.
To improve care experiences, which can consequently improve ma-
ternal and neonatal outcomes, it is necessary to remove barriers in ma-
ternity care for pregnant women with disabilities (Clements et al., 2016;
Tarasoff, 2015). It is therefore recommended to perform a systematic re-
view regarding the experiences of women with disabilities in maternity
care and what these women encounter to improve their experiences.
This review describes commonly reported experiences to address these
barriers in clinical practice. The synthesised findings can be used to in-
form policy or healthcare practices to improve the quality of maternity
care. The aim of this review is to identify and provide an overview of
the reported experiences of women with physical disabilities, including
sensory disabilities, regarding maternity care.
Methods
This systematic review was conducted using the meta-aggregation
approach for qualitative research synthesis (Lockwood et al., 2015) and
the steps of the Preferred Reporting Items for Systematic Reviews and
Meta-Analysis (PRISMA) statement (Moher et al., 2009a) for reporting
systematic reviews.
Search strategy
A systematic literature search was conducted on the 13th of February
2019 without limit features in the following databases: PubMed, Em-
base and CINAHL. Reference lists of included studies were searched by
2
Midwifery 96 (2021) 102938
hand, and articles citing those studies were searched in Scopus to iden-
tify additional relevant studies. A final search was performed October,
16, 2020.
The search terms contained subheadings (e.g. MeSH) and free-text
words. Two researchers (MHG and MV) agreed on a final search string
involving multiple related terms and synonyms to identify relevant stud-
ies, such as ‘Obstetrics’, ‘Disabled Persons’ and ‘Experience’ (Appendix
I). To ensure a comprehensive search, there were no restrictions on the
country of research or publishing year.
Selection criteria
This systematic review focused on the domain ‘women with physi-
cal disabilities’, determinant ‘maternity care’ and outcome ‘experience’.
Since the underlying causes are investigated, qualitative studies and
qualitative data extracted from mixed methods studies that addressed
the experiences of women with physical disabilities regarding mater-
nity care were considered relevant. For practical reasons, only articles
in English and Dutch were included.
This systematic review was limited to articles concerning physical or
sensory disabilities, as people with intellectual impairments appear to
be more disadvantaged in many settings (Roulstone and Barnes, 2005).
Studies on domestic abuse, and studies on the experiences of physically
disabled women with pregnancy and birth, in which the purpose was not
to investigate maternity care, were also excluded. Additionally, studies
including other people such as healthcare providers and family members
were excluded.
The Rayyan web tool was used for study selection (Ouzzani et al.,
2016). After duplicate resolution, all titles and abstracts were screened
by both researchers (MHG and MV) for eligibility against the criteria
for inclusion and exclusion. Next, the full text was screened by MHG.
Studies of which it was unclear whether they met the criteria for inclu-
sion or exclusion were independently screened by the second researcher
(MV) and discussed until consensus was reached. Other members of the
research group were consulted in case of any remaining doubts. Studies
that addressed the maternity care experiences of women with physical
disabilities and were available in full text were reviewed in detail.
Methodological quality
The Critical Appraisal Skills Programme (CASP) qualitative check-
list (Critical Appraisal Skills Programme, 2018) was used to evaluate
the methodological quality of the studies. The checklist contains ten
questions that can be answered with ‘yes’, ‘can’t tell’ or ‘no’. A number
of hints are provided after each question. The research team decided to
rate ’yes’ with one point, ’can’t tell’ with half a point and ’no’ with zero
points to be able to link a quality score. Studies with a quality score
of 0–4 points were classified as low quality studies, with 5–7 points as
moderate quality and with 8–10 points as high quality. Both researchers
(MHG and MV) independently evaluated the quality score of each study
using the CASP checklist. Differences in ratings were discussed with the
research team until consensus was reached (MHG, MV, AH).
Data extraction
Data extraction was performed in the following phases according
to meta-aggregation (Lockwood et al., 2015): 1) General details of the
studies were extracted, including the country of research, methodology,
sample size, disability type, analytical approach, key themes and conclu-
sions; 2) The verbatim extract of the findings from the author’s analyti-
cal interpretation of data relevant to the research question was imported
into Microsoft Excel. The findings were identified by repeated reading
and accompanied by an illustration from the same study, such as a di-
rect quotation or other data supporting the finding; 3) Plausibility levels
were assigned based on evaluation by two researchers (MHG and MV).
The plausibility levels are as follows (Lockwood et al., 2015):
M. Heideveld-Gerritsen, M. van Vulpen, M. Hollander et al. Midwifery 96 (2021) 102938

- Unequivocal: findings accompanied by an illustration that are beyond
reasonable doubt and therefore not open to challenge;
- Equivocal: findings accompanied by an illustration lacking clear as-
sociation with it and therefore open to challenge;
- Unsupported: findings not supported by the data.
consistency of the findings. Strong evidence was defined as consistent
findings in multiple high-quality studies. Moderate evidence was defined
as consistent findings in one high-quality study and at least one low-
quality study. Insufficient evidence was defined as only one available
study or inconsistent findings in multiple studies (Proper et al., 2011).

Ranked unequivocal and equivocal findings share equal recognition

in the synthesis, while unsupported findings do not appear. The reasons
for level allocation were documented.
Synthesis
A three-phase approach to thematic analysis was adopted on the
basis of the meta-aggregation method (Lockwood et al., 2015): 1) As
described in the section on data extraction, the extraction of all find-
ings from all included studies was accompanied by illustrations and as-
signed a plausibility level; 2) Categories were developed for findings,
with at least two findings from different studies per category. Categori-
sation involved repeated, detailed analysis of the findings. Findings that
were similar in meaning were grouped together into one category. Each
category was accompanied by a combination of a brief description of
the key concept and an explanatory statement; 3) Synthesised findings
were developed as an overarching description of at least two categories
(Lockwood et al., 2015). The categories and synthesised findings were
discussed until consensus was reached.
A best-evidence synthesis was performed to summarise all findings,
taking into account the methodological quality, number of studies and
Results
After duplicate resolution, the database search resulted in 4,479
potentially relevant studies. A manual search in Scopus and reference
lists resulted in seven additional studies. A total of 4,486 studies were
screened by title and abstract. After discussing the studies of which it
was unclear whether they could be included, 33 studies remained. These
studies were screened for eligibility by reading full text.
Due to the specific context of domestic abuse, four articles were ex-
cluded, five due to the inclusion of people with intellectual disabilities
and two due to the inclusion of other people. Eleven articles focused
on pregnancy or childbirth and not specifically on maternity care. One
article was excluded due to Norwegian language.
Studies of which it was unclear whether they could be included
were discussed with a second researcher (MV), resulting in nine relevant
qualitative studies (Bertschy et al., 2015; Frederick, 2015; Ganle et al.,
2016; Lipson and Rogers, 2000; Mazurkiewicz et al., 2018; Mitra et al.,
2016; Nguyen et al., 2020; Smeltzer et al., 2017; Tarasoff, 2017)
and one mixed methods study from which only qualitative data was
used (Smeltzer et al., 2016). Figure 1 provides a flow diagram of the

Records idenfied through

database searching
Identification

PubMed (n = 1691) Addional records idenfied

Embase (n = 3463) through other sources
CINAHL (n = 27) (n = 7)

Records aer duplicates removed

(n = 4486)
Records excluded
Title (n = 4386)
Screening

Abstract (n = 67)
Records screened
(n = 33)
Full-text arcles excluded,
with reasons
Domesc abuse (n = 4)
Intellectual (n = 5)
Including other people (n =2)
Not specifically Maternity
Eligibility

Full-text arcles assessed Care (n = 11)

for eligibility Wrong language (n = 1)
(n = 10)
Included

Studies included in
qualitave synthesis
(n = 10)

Fig. 1. PRISMA flow diagram of study selection.

3
M. Heideveld-Gerritsen, M. van Vulpen, M. Hollander et al. Midwifery 96 (2021) 102938

Table 1
Study characteristics.

Article Methodology Sample Disability Analytic approach CASP Quality

Bertschy et al., 2015 5 Individual interviews n = 17 Physical Qualitative Content Analysis based on 10
Switzerland - 45-60 minutes Anderson’s behavioral model.
4 Focus groups
- 120-180 minutes
Semi-structured interview guide.
Nguyen et al., 2020 56 interviews n = 29 Physical Thematic analysis guided by the Braun 9.5
Vietnam - 29 first interviews and Clarke approach. NVivo was used.
- 27 follow-up interviews
Physical access audit
- 14 facilities
Semi-structured interview
guide and access audit checklist
Mazurkiewicz et al., 2018 Individual interviews n = 16 Sensory Interpretative Phenomenological 9
Poland - Average 60 minutes - Visual Analysis approach
Semi-structured interview guide.
Mitra et al., 2016 Individual interviews n = 25 Physical Kurasaki’s method used for reliability 9
USA and consistence of coding. Atlas.ti was
- By phone. used.
Semi-structured interview guide.
Smeltzer et al., 2017 Individual interviews n = 22 Physical Conventional content analysis 9
USA - By phone facilitated by NVivo.
- Average 120 minutes
Semi-structured, open-ended
interview protocol.
Tarasoff, 2017 In-depth interviews n = 13 Physical Informed by a grounded theory 9
Canada - 10 in person Sensory approach.
- 3 by phone - Visual (n=1)
- 54-135 minutes
Follow-up interviews
- 10 by phone
Semi-structured interview guide.
Ganle et al., 2016 In-depth interviews n = 72 Physical (n=47) Attride-Stirling’s thematic network 8.5
Ghana - 60-90 minutes Sensory analysis framework.
Semi-structured interview guide. - Visual (n=7)
- Speech (n=6)
- Hearing (n=12)
Smeltzer et al., 2016 Individual interviews n = 25 Physical Traditional content analysis. Atlas.ti 8.5
USA - By phone. was used.
Semi-structured interview guide
Lipson and Rogers, 2000 Individual interviews n = 12 Physical Not reported 6.5
USA - 60-120 minutes
Interview schedule.
Frederick, 2015 14 Individual interviews n = 26 Sensory Not reported 5.5
USA - 2 in person - Visual
- 12 by phone
3 Focus groups.
A series of questions

full screening process (Moher et al., 2009b). Appendix I provides an
overview of the databases in which the articles appeared.
Study characteristics
The characteristics of the included studies are presented in Table 1.
The studies were conducted in Switzerland (Bertschy et al., 2015),
Vietnam (Nguyen et al., 2020), Ghana (Ganle et al., 2016), Poland
(Mazurkiewicz et al., 2018), Canada (Tarasoff, 2017) and the United
States (Frederick, 2015; Lipson and Rogers, 2000; Mitra et al., 2016;
Smeltzer et al., 2017, 2016), and were published between 2000 and
2020. Seven studies used individual interviews (Ganle et al., 2016;
Lipson and Rogers, 2000; Mazurkiewicz et al., 2018; Mitra et al.,
2016; Smeltzer et al., 2017, 2016; Tarasoff, 2017), two studies com-
bined individual interviews with focus groups (Bertschy et al., 2015;
Frederick, 2015) and one study combined interviews with physical
access audits (Nguyen et al., 2020) . Five studies conducted inter-
views in person (Bertschy et al., 2015; Ganle et al., 2016; Lipson and
Rogers, 2000; Mazurkiewicz et al., 2018; Nguyen et al., 2020),
three studies conducted interviews by phone (Mitra et al., 2016;
Smeltzer et al., 2017, 2016) and two studies conducted interviews
both in person and by phone (Frederick, 2015; Tarasoff, 2017). A
total of seven focus groups were executed (Bertschy et al., 2015;
Frederick, 2015). Eight studies used a semi-structured interview guide
(Bertschy et al., 2015; Ganle et al., 2016; Mazurkiewicz et al., 2018;
Mitra et al., 2016; Nguyen et al., 2020; Smeltzer et al., 2017,
2016; Tarasoff, 2017), one used an interview schedule (Lipson and
Rogers, 2000) and one used a series of questions (Frederick, 2015).
A total of 257 women with physical and/or sensory disabilities were
included. One woman had a combination of a physical and sensory dis-
ability in the form of blindness. A total of 189 women had a physical
disability, 49 had visual impairment, six had a speech impairment and
12 had a hearing impairment.
Methodological quality
The methodological quality (CASP quality score) ranged from 5.5
to 10, with an average of 8.5 (Table 2). Eight articles were classi-
fied as high-quality studies (Bertschy et al., 2015; Ganle et al., 2016;
Mazurkiewicz et al., 2018; Mitra et al., 2016; Nguyen et al., 2020;
Smeltzer et al., 2017, 2016; Tarasoff, 2017), while two studies were
classified as moderate-quality studies (Frederick, 2015; Lipson and
Rogers, 2000).

4
M. Heideveld-Gerritsen, M. van Vulpen, M. Hollander et al.
Table 2
CASP checklist and CASP quality score.
Results of individual studies
Although all studies reported the experience of physically disabled
women with maternity care, the studies used different formats to display
the categories and themes. Table 3 provides an overview of the key
themes and results of the individual studies. The study by Frederick did
not describe key themes or categories, but described how women with
visual impairment experienced discrimination by healthcare providers
during postnatal care (Frederick, 2015).
Bertschy et al. focused on women with spinal cord injury (SCI)
(Bertschy et al., 2015). The main categories were deduced from An-
5
Midwifery 96 (2021) 102938
dersen’s behavioural model of health service utilisation and are as fol-
lows (Andersen, 1995): 1) Women’s perceived health needs, and 2) The
health services used. Sub-categories were developed by analysing the
data.
Nguyen et al. included women with congenital or acquired physical
disabilities caused by different factors, such as cerebral palsy (CP), polio
or a traffic accident (Nguyen et al., 2020). Thematic analysis resulted
in six themes. Findings from the physical access audits were consistent
with the reported experiences of women with physical disabilities.
Mazurkiewicz et al. included women with visual impairment
(Mazurkiewicz et al., 2018). The women were asked to freely voice
M. Heideveld-Gerritsen, M. van Vulpen, M. Hollander et al. Midwifery 96 (2021) 102938

their opinions on five major themes that were pre-selected by the
researchers. The Interpretative Phenomenological Analysis approach
(Pietkiewicz and Smith, 2012) was used to evaluate data within these
themes.
Mitra et al. included women with a wide range of physical disabil-
ities, such as Achondroplasia, spinal muscular atrophy (SMA) and CP
(Mitra et al., 2016). Interviews were analysed using an iterative, inter-
pretive process, resulting in three broad themes: 1) clinician knowledge
and attitude, 2) physical accessibility of healthcare facilities and equip-
ment, and 3) need for information related to pregnancy and postpartum
support.
Smeltzer et al. included women with physical disabilities in
the form of CP, SCI and ten other types of physical disabilities
(Smeltzer et al., 2017). The interview guide covered eight broad top-

Table 3
Key themes and conclusions of individual studies.

Article Key Themes Key conclusion

Bertschy et al., 2015 Women’s perceived health needs The existing health care services are far from being tailored to meet the
Switzerland Information about SCI and pregnancy; needs and expectations of these mothers, and further improvements in both
1 Specific health professionals’ expertise; policy and practice are necessary to provide better health care to these
2 Medical treatment; women. Policy should provide a framework for health care providers that
3 Access to and availability of care facilities; would allow them to most effectively meet the women’s needs.
4 Specific supplies and equipment;
5 Improved integration of care.

The health services used

1 Involved health professionals;
2 Consulted facilities;
3 Perceived degree of services utilization

Nguyen et al., 2020 1 Technology and the search for “normal”;
Vietnam 2 “People with disabilities should not give birth”;
3 Information for “normal” women only;
4 Increased direct and indirect costs;
5 Confusing waiting and referral procedures;
6 Poor accessibility of transportation, facilities, and
equipment.
Mazurkiewicz et al., 1 Perceived stigma and lack of affirmation for the
2018)
Poland interviewee’s motherhood;
1 Accessibility of childbirth preparation;
2 Accessibility of perinatal care and hospital facilities;
3 Midwives’ attitudes;
4 Expectations for care improvements.
Although women with physical disabilities have the right to enjoy healthy
motherhood and quality healthcare, the actions and inaction of many
healthcare staff suggest otherwise. At present, many North Vietnamese
healthcare services are ill-equipped to provide disability-inclusive and
responsive maternal healthcare. Many challenges the women experienced
are potential disincentives and limit the quality of care. The complex
maternal healthcare needs of women with physical disabilities should be
met by ensuring their genuine inclusion in mainstream healthcare services.
The quality of perinatal care remains unsatisfactory and the resulting
problems are not effectively resolved as they are often not even recognised.
Health care professionals ’ training should be modified and their attitudes
changed. Specific standards and procedures should be developed and
introduced in clinical practice

Mitra et al., 2016) 1 Clinician knowledge and attitudes; Clinicians should be provided with the education necessary to prepare them
USA 2 Physical accessibility of health care facilities and for the care of women with disabilities, and both formal and informal
equipment; support should be made more widely available. There is a need for
3 Need for information related to pregnancy and information about the potential impact of disability on pregnancy.
postpartum supports.

Smeltzer et al., 2017 Labor and birth experience Clinicians need to be educated and trained in order to provide more
USA 1 Women’s preferences for type of delivery; effective care, including knowledge and technical skills. Clinicians need
2 Clinicians and some women expected no labor pain’; greater attention to address the information needs of women with physical
3 Fears prompting active advocacy; disabilities and their desire to be informed and consulted about treatment
4 Positive experiences. decisions. More effective communication with women about these issues is
likely to increase their satisfaction with obstetric and anaesthesia care.
Obstetrical anaesthesia
1 Importance of consultation with the anaesthesia team;
2 Decisions about epidural/spinal vs general anaesthesia;
3 Failed epidural with repeated efforts;
4 Fear of injury related to anaesthesia.

Tarasoff, 2017 1 Inaccessible care settings; Women with physical disabilities continue to encounter barriers, including
Canada 2 Negative attitudes; inaccessible care settings and providers lacking disability knowledge.
3 Lack of knowledge and experience; Providers need to do a better job of listening and working with these
4 Lack of communication and collaboration among women. Collaboration among perinatal and disability-related providers and
providers; meaningful inclusion of women in educational initiatives and care plans are
5 Misunderstandings of disability and disability-related vital for improving care experiences.
needs.

Ganle et al., 2016 Desire for children and experiences with pregnancy and Maternal healthcare services that are designed to address the needs of
Ghana childbirth able-bodied women might lack the flexibility and responsiveness to meet the
Challenges to maternal healthcare access special maternity care needs of women with disability. More
1 Mobility problems; disability-related cultural competence and patient-centred training for
2 Limited support; healthcare providers as well as the provision of disability-friendly transport
3 Communication problems; and healthcare facilities and services are needed.
4 Unfriendly healthcare infrastructure;
5 Healthcare providers’ insensitivity and lack of knowledge.

(continued on next page)

6
M. Heideveld-Gerritsen, M. van Vulpen, M. Hollander et al.
Table 3 (continued)
Article Key Themes
Smeltzer et al., 2016 1 Clinicians’ lack of knowledge about pregnancy-related
USA needs of women with physical disabilities;
2 Clinicians’ failure to consider women’s knowledge,
experience, and expertise about their own disabilities;
3 Clinicians’ lack of awareness of the reproductive concerns
of women with physical disabilities.
Lipson and Women’s perspective
Rogers, 2000 1 The effect of the disability;
USA 2 Women’s resources;
3 Personality and approach.
The health care system factorsPregnancy
1 Health providers and parents’ negative attitudes;
2 Early referral, testing, and referral to occupational and
physical therapy;
3 Difficulties with usual prenatal care practices;
4 Lack of information.
Birth experiences
1 Frequent use of high technology when women would
have preferred to deliver vaginally if possible;
2 Carefully made plans that did not work out;
3 Insensitive hospital care.
The postpartum period/infant care
1 Insensitive care providers;
2 Lack of referral to appropriate agencies;
3 Lack of specialised instruction on lactation;
4 Adaptive equipment;
5 Help in learning techniques
Frederick, 2015) Not reported
USA
ics related to pregnancy that can be divided into topics related to the
experience of labour, birth and anaesthesia. These topics were used to
structure the results.
Tarasoff primarily included women with physical disabilities such
as arthritic conditions, CP and congenital amputation (Tarasoff, 2017).
Some participants reported more than one impairment, and one partic-
ipant reported a sensory disability in the form of congenital blindness.
Analysis of the data was informed by a constructivist grounded the-
ory approach, resulting in five interrelated themes regarding barriers
to perinatal care.
Ganle et al. reported the experience of women with both physical
and sensory disabilities in the form of speech, hearing and visual impair-
ments (Ganle et al., 2016). The thematic network framework of Attride-
Stirling (Attride-Stirling, 2001) was used to analyze the data, resulting
in two categories and five themes related to the challenges of accessing
maternal healthcare.
The mixed methods study of Smeltzer et al. included women with
physical disabilities as CP, amputation, SMA and six other physical dis-
abilities (Smeltzer et al., 2016). The semi-structured interview guide
included 56 questions. The topics were related to women’s perinatal
experiences in general and their perceptions of the interaction of their
disabilities and pregnancy. Analysis resulted in three themes relating to
women’s interactions with healthcare providers.
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Midwifery 96 (2021) 102938
Key conclusion
Women’s recommendations were based on their perceptions that health care
clinicians lack knowledge about pregnancy within the context of disability
and clinicians’ failure to increase their knowledge to a level that inspires
confidence in the women. The need on the part of clinicians to listen to
women with physical disabilities and to respect them and their expertise
and knowledge based on years of living with their disabilities was identified
by almost all participants in the study.
Further, women recommended that clinicians avoid stereotyping and bias
and to view women with physical disabilities as sexual persons capable of
becoming pregnant, having children, and becoming mothers.
They expressed the need for clinicians to learn about and understand
women’s disabilities and to see women beyond their disabilities. Education
of health care professionals about disability is essential to remove stigma
and bias toward women with physical disabilities. Education of clinicians
about the interaction of disability with pregnancy was identified as essential
if women with physical disabilities are to receive the high-quality health
care during pregnancy that they and their offspring deserve.
The professional’s positive attitude and support of a woman with a disability
through recognizing and verbalizing that she has the ability to be involved in
the care of her baby will bolster her confidence, which can impact the whole
postpartum experience. We recommend training and values clarification for
health care providers to help them provide more sensitive and appropriate
care for women with disabilities. It is important for care providers to work
as a team on behalf of women with disabilities. Health care providers should
take responsibility for helping women assess their physical, social, and daily
living needs so that they can obtain services to help them function to the
best of their ability. Suggesting appropriate baby care equipment is
important for all parents, but it is essential for parents with disabilities.
Postnatal care is a particularly critical time when blind mothers are likely to
face stigma in the form of discouragement and discrimination. When these
mothers move from passive, labouring patients to the expected role of
independent mothers, stigmatizing interactions are likely to occur.
Participants expressed deep fear of the potential consequences of such
stigmatizing interactions.
Lipson and Roger included women with physical disabilities such as
CP, spina bifida and Achondroplasia (Lipson and Rogers, 2000). The
resulting categories were divided into ‘Women’s perspective’ and ‘The
healthcare system factors’, in which a subdivision was made for periods
of pregnancy, birth and postpartum.
Synthesis of results
Following data extraction, a total of 197 findings were imported into
Microsoft Excel. A total of 61 findings were not used due to an ‘unsup-
ported’ plausibility level. The remaining 49 equivocal and 87 unequivo-
cal findings were used to form categories. The analysis of these findings
resulted in thirteen categories and four synthesised findings.
Due to the inclusion of both physical and sensory disabilities, a dis-
tinction was made between disability type. Table 4 provides an overview
of the synthesised findings and categories in combination with the dis-
ability type of the participants whose data were used to form categories.
Accessibility
The synthesised finding Accessibility includes the following cate-
gories: facilities, equipment and educational programs.
M. Heideveld-Gerritsen, M. van Vulpen, M. Hollander et al. Midwifery 96 (2021) 102938

Table 4
Synthesised findings and categories in combination with disabilities.

Synthesised findings Categories References

Accessibility Facilities
Physical Bertschy et al., 2015; Lipson and Rogers, 2000;
Mitra et al., 2016; Nguyen et al., 2020
Physical (including one Visual) Tarasoff, 2017
Sensory (Visual) Mazurkiewicz et al., 2018
Physical and Sensory (Speech, Hearing and Visual) Ganle et al., 2016
Equipment
Physical Bertschy et al., 2015; Lipson and Rogers, 2000;
Mitra et al., 2016
Physical (including one Visual) Tarasoff, 2017
Sensory (Visual) Mazurkiewicz et al., 2018
Educational programs
Physical Bertschy et al., 2015
Sensory (Visual) Mazurkiewicz et al., 2018
Knowledge of healthcare providers Lack of knowledge
Physical Bertschy et al., 2015; Lipson and Rogers, 2000;
Mitra et al., 2016; Nguyen et al., 2020; Smeltzer et al.,
2017, 2016
Physical (including one Visual) Tarasoff, 2017
Dismissal of women’s concerns
Physical Smeltzer et al., 2017
Physical (including one Visual) Tarasoff, 2017
Assistance
Sensory (Visual) Mazurkiewicz et al., 2018
Physical and Sensory (Speech, Hearing and Visual) Ganle et al., 2016
Communication
Sensory (Visual) Mazurkiewicz et al., 2018
Speech and Hearing Ganle et al., 2016
Attitude of healthcare providers Unwillingness to assist
Physical Lipson and Rogers, 2000; Mitra et al., 2016;
Nguyen et al., 2020
Physical (including one Visual) Tarasoff, 2017
Physical and Sensory (Speech, Hearing and Visual) Ganle et al., 2016
Support
Physical Bertschy et al., 2015; Lipson and Rogers, 2000;
Mitra et al., 2016; Smeltzer et al., 2017, 2016
Women’s feelings Dehumanised
Physical Nguyen et al., 2020; Smeltzer et al., 2016
Physical (including one Visual) Tarasoff, 2017
Physical and Sensory (Speech, Hearing and Visual) Ganle et al., 2016
Afraid
Physical Bertschy et al., 2015; Smeltzer et al., 2017
Vulnerable
Physical Lipson and Rogers, 2000
Sensory (Visual) Frederick, 2015
Advocate themselves
Physical Lipson and Rogers, 2000; Smeltzer et al., 2017

Facilities refers to the spaces that women visit when accessing
maternity care. There is strong evidence that women with physi-
cal and sensory disabilities experience barriers to accessing the ma-
ternity care facilities (Bertschy et al., 2015; Ganle et al., 2016;
Lipson and Rogers, 2000; Mazurkiewicz et al., 2018; Mitra et al., 2016;
Nguyen et al., 2020; Tarasoff, 2017). Women with physical disabili-
ties report that rooms such as offices, restrooms and washrooms are
inaccessible to wheelchairs (Bertschy et al., 2015; Ganle et al., 2016;
Mitra et al., 2016; Nguyen et al., 2020; Tarasoff, 2017). One woman
expressed pleasure at receiving a handicapped room – a larger room
with adapted equipment in which she was able to use her walker and
wheelchair (Lipson and Rogers, 2000). Women with sensory impairment
express difficulties in finding their way around, especially if there is no
one available to assist them (Ganle et al., 2016; Mazurkiewicz et al.,
2018).
Equipment refers to a set of items used to assist women. There is
strong evidence that there is limited access to adapted equipment for
women with physical disabilities (Bertschy et al., 2015; Lipson and
Rogers, 2000; Mitra et al., 2016; Tarasoff, 2017). The examination
table, scales and baby equipment are commonly mentioned as not
adapted to women’s needs. There is insufficient evidence concerning
equipment for women with sensory disabilities (Mazurkiewicz et al.,
2018). One woman with visual impairment reported the following
(Mazurkiewicz et al., 2018):
“During my stay in hospital all the facilities to support people with
disabilities, making me feel safer and more comfortable, are impor-
tant.” - OT
Educational programs refer to classes on preparation for childbirth.
There is insufficient evidence that educational programs are not tai-
lored to the needs of women with physical and sensory disabilities
(Bertschy et al., 2015; Mazurkiewicz et al., 2018).
Knowledge of healthcare providers
The synthesised finding Knowledge of healthcare providers includes
the following categories: lack of knowledge, dismissal of women’s concerns,
assistance and communication. Data related to women with sensory dis-
abilities did not include findings in the categories lack of knowledge and

8
M. Heideveld-Gerritsen, M. van Vulpen, M. Hollander et al.
dismissal of women’s concerns. In addition, data related to women with
physical disabilities did not include findings on communication.
Lack of knowledge refers to limited information, facts and skills
gained through education or experience. There is strong evidence that
there is a lack of knowledge of the relationship between physical dis-
ability and pregnancy among healthcare providers (Bertschy et al.,
2015; Lipson and Rogers, 2000; Mitra et al., 2016; Nguyen et al.,
2020; Smeltzer et al., 2016; Tarasoff, 2017; Tran et al., 2018). Further-
more, there is moderate evidence that women believe that caregivers
do not seek relevant information (Bertschy et al., 2015; Lipson and
Rogers, 2000). A woman with SCI reported the following (Bertschy et al.,
2015):
“During my first appointment with the gynaecologist, I asked him
if he had other patients like me before and if he knew the process.
He told me: ‘No not at all.’ He said he could find out, but that he
thought there was no problem. Then I said, ‘Yeah, but how am I going
to give birth? And what will happen?’ I had a thousand questions
besides all the standard questions of a standard pregnancy. Then he
told me: ‘Well, we will see. I think you’re not a high-risk pregnancy.
‘He said:’ We’ll frame it as a normal pregnancy, and if you need
monthly controls, we will do that, no problem.’ So, that was strange.”
- Jeannine
Dismissal of women’s concerns refers to the decision by a health-
care provider that something is not important or worth considering.
There is strong evidence that healthcare providers dismiss the disability-
related concerns of women with physical disabilities (Smeltzer et al.,
2017; Tarasoff, 2017). Based on the experiences of women, healthcare
providers appear to focus on one aspect of the disability and/or over-
look women’s disability-related concerns by focusing only on pregnancy
and childbirth (Tarasoff, 2017).
Assistance refers to actions to help women with disabilities. There is
insufficient evidence that women with physical disabilities experience
long wait times for assistance from healthcare providers (Ganle et al.,
2016). However, there is strong evidence that women with sensory dis-
abilities believe that healthcare providers do not offer assistance un-
less explicitly requested (Ganle et al., 2016; Mazurkiewicz et al., 2018).
Healthcare providers do not appear to recognise disabled women’s
needs.
Communication refers to information exchange by speaking, writing,
or using another medium. There is insufficient evidence that women
with sensory impairment encounter problems in communication with
their healthcare providers (Ganle et al., 2016; Mazurkiewicz et al.,
2018). However, women with visual impairment report that healthcare
providers do not know how to demonstrate care (Mazurkiewicz et al.,
2018). Verbal communication is insufficient for learning and commu-
nicating, as women with visual impairment experience familiarisation
primarily through sense and touch (Mazurkiewicz et al., 2018). Women
with speech and hearing impairments reported communication difficul-
ties with healthcare providers unless they were accompanied by a part-
ner (Ganle et al., 2016).
Attitude of healthcare providers
The synthesised finding Attitude of healthcare providers includes the
following categories: unwillingness to assist and support. Data related to
women with sensory disabilities did not include findings in either cate-
gory.
Unwillingness to assist refers to the expression of unwillingness to
help women with disability-related care. There is strong evidence that
women with physical disabilities encounter unwillingness to provide
assistance on the part of healthcare providers (Ganle et al., 2016;
Lipson and Rogers, 2000; Mitra et al., 2016; Nguyen et al., 2020;
Tarasoff, 2017). The women believe that healthcare providers are un-
comfortable supporting disability-related needs (Ganle et al., 2016;
9
Midwifery 96 (2021) 102938
Tarasoff, 2017), and it is necessary for women’s partners to help due to
the providers’ unwillingness to assist (Mitra et al., 2016; Tarasoff, 2017).
Support refers to the provision of encouragement or emotional as-
sistance by healthcare providers. There is strong evidence that a sup-
portive attitude from healthcare providers has a positive influence on
the experiences of women with physical disabilities (Bertschy et al.,
2015; Lipson and Rogers, 2000; Mitra et al., 2016; Smeltzer et al., 2017,
2016). The women described healthcare providers who provided sensi-
tive, respectful and supportive care (Bertschy et al., 2015; Lipson and
Rogers, 2000; Mitra et al., 2016; Smeltzer et al., 2017, 2016), and one
woman with CP reported the following (Smeltzer et al., 2017):
“[My obstetrician] knew…that I wasn’t talking out of fear…that I
had some knowledge and education to support my decisions. She
really believed I knew my body the best and was willing to help
me….She listened and she read my chart and she said “I see this is
what you want …you and your baby to come out of this healthy and
fine.”…And she’s like “you have every right…”
Women’s feelings
The synthesised finding Women’s feelings includes the following cat-
egories: dehumanised, afraid, vulnerable and advocating for yourself. Data
related to women with sensory disabilities did not include findings in
the categories dehumanised, afraid or advocating for yourself.
Dehumanised refers to feeling less than human. There is strong evi-
dence that women with physical disabilities feel dehumanised through
the actions of healthcare providers (Ganle et al., 2016; Nguyen et al.,
2020; Smeltzer et al., 2016; Tarasoff, 2017). These women described
healthcare providers who shouted and made negative comments about
their capacity for motherhood (Ganle et al., 2016; Nguyen et al., 2020;
Smeltzer et al., 2016; Tarasoff, 2017). Women reported feeling like a
spectacle (Tarasoff, 2017).
“They don’t see me as a person anymore. I’m a disability. … We were
talking about something to do with my concerns, and she reached
over and pulled my sleeve up. I tend to keep my sleeve down because
I find it cuts down on my daily awkward exchanges and interactions.
But she pulled my sleeve up and held my arms out to this resident.
Like, “well you can see, she’s got this disability and this disability.”
And it made me feel like ok, so I’m not a person in this exchange. …
People didn’t seem to pay much attention [to my disability]. When
it did flip, it was the wrong kind of attention.”
Afraid refers to an unpleasant emotion caused by danger, pain or
harm. There is strong evidence that women with physical disabilities
fear anaesthetic injury (Bertschy et al., 2015; Smeltzer et al., 2017).
They were afraid to re-experience moments of fear of functional limi-
tations and reported fear of negative outcomes (Bertschy et al., 2015;
Smeltzer et al., 2017).
Vulnerable refers to being easily hurt, influenced or attacked. There
is insufficient evidence that women with physical and sensory disabil-
ities feel vulnerable during the postpartum period (Frederick, 2015;
Lipson and Rogers, 2000). Women experience the contradiction between
being a dependent patient who must rely on the guidance of healthcare
providers and being a disabled woman expected to demonstrate her ca-
pacity for independent motherhood (Frederick, 2015). In addition, when
a presumption of incompetence leads to the involvement of social work-
ers, women feel vulnerable and distressed (Frederick, 2015).
Advocating for yourself refers to advocating for one’s needs. There
is moderate evidence that women with physical disabilities experi-
ence a sense of advocacy for their needs (Lipson and Rogers, 2000;
Smeltzer et al., 2017). The women viewed themselves as knowledge-
able and sought information from different sources to communicate with
healthcare providers (Smeltzer et al., 2017). In addition, the women
chose to stay awake during childbirth and advocated for themselves
M. Heideveld-Gerritsen, M. van Vulpen, M. Hollander et al.
or sought advocacy from spouses in order to avoid poor outcomes
(Smeltzer et al., 2017).
Discussion
In this review, findings from ten studies were aggregated to provide
an overview of the experiences of women with physical disabilities, in-
cluding sensory disabilities, regarding maternity care. There is strong
evidence that women with physical disabilities experience barriers re-
lated to accessibility of facilities, equipment, knowledge and healthcare
providers’ attitude towards their concerns, and unwillingness to assist.
As a result, women feel dehumanised and afraid. However, support by
healthcare providers has a positive influence on their experiences. In
addition, women with sensory disabilities experience barriers to acces-
sibility of facilities and a lack of assistance by healthcare providers.
With regard to the experiences of women with physical disabilities,
little has changed in the last two decades; the barriers are consistent
with studies conducted 20 years ago (Carty, 1998; Thomas and Cur-
tis, 1997). These findings have also been confirmed by recent studies,
including a review by Tarasoff that reports barriers to accessibility of
facilities and equipment and care that is not tailored to women’s needs
(Iezzoni et al., 2015; Tarasoff, 2015; Walsh-Gallagher et al., 2012).
Furthermore, healthcare providers who provide care to physically dis-
abled women recognised the lack of accessible care facilities, equipment
and disability-specific training as barriers (Mitra et al., 2017). Lack of
knowledge leads healthcare providers to not feel competent in caring
for physically disabled women (Walsh-Gallagher et al., 2013). The in-
cluded studies reflect the notion that the pregnant body is assumed
to be a non-disabled body, and this assumption establishes the prac-
tices and physical setting of maternity care. To improve accessibility
to maternity care, it is recommended that spacious rooms, including
adapted equipment, be provided. In addition, the findings of this re-
view indicate a lack of knowledge among healthcare providers, which
puts women with physical disabilities at risk of receiving inappropri-
ate advice from well-intentioned providers, which can lead to difficul-
ties making informed decisions. Improvement is only possible by rais-
ing awareness of the barriers faced by women with disabilities. Further-
more, the negative attitude of healthcare providers towards women with
disabilities is problematic and appears to result from a lack of proper
professional training (Guerin et al., 2017). Evidence-based knowledge
and practice-based training for healthcare providers can ensure that all
women’s expectations are met (Smeltzer et al., 2018). We therefore rec-
ommend providing training sessions for healthcare providers to empha-
sise patient-centered care, teach effective collaboration with women and
provide knowledge of the relationship between disabilities and preg-
nancy (Smeltzer et al., 2018). Because training involves several inter-
related components and concerns behavioural changes in a number of
healthcare provider groups, it is a complex intervention (Craig et al.,
2008). Therefore, it is advisable to use the Medical Research Council
(MRC) framework on complex interventions to guide the development
and evaluation of training (Craig et al., 2008). The enriched develop-
ment phase of the MRC framework can be used to improve the fit with
clinical practice and the likelihood of success (Bleijenberg et al., 2018).
Actively involving women with disabilities in the design and evaluation
of the training is also recommended (Walsh-Gallagher et al., 2013).
Research should be conducted on how to best organise training to
increase healthcare providers’ knowledge. Furthermore, against a back-
drop of heterogeneous studies, more comprehensive research is required
to explore the experiences of women with sensory disabilities, including
visual, speech and hearing impairments.
The strength of this systematic review is that various methodological
methods have been used to increase reliability of the results. In addi-
tion, the search, data extraction and quality assessment were discussed
until consensus was reached. Furthermore, by using the CASP, the lim-
itations of individual studies were evaluated and the quality of each
10
Midwifery 96 (2021) 102938
study was taken into account in the synthesis. The use and description of
these methods such as CASP (Critical Appraisal Skills Programme, 2018)
and the meta-aggregation method (Lockwood et al., 2015) have also in-
creased reproducibility. One study corresponding to Tarasoff’s review
was included in our review (Tarasoff, 2015). Other included studies in
Tarasoff’s review had no focus on maternity care, but on pregnancy in
general. Consequently, these studies are not included in our review. Nine
studies not included in the review of Tarasoff are included in our sys-
tematic review. Including the study of Nguyen et al. focusing on how
access to maternal healthcare was experienced, this study reinforced all
synthesised findings from our review (Nguyen et al., 2020).
However, this review also has several limitations. For example, the
included studies mainly describe negative experiences. Therefore, the
results may not provide an objective impression of women’s experiences
with maternity care. In addition, this review includes studies conducted
in six countries in different contexts, which can potentially limit the
generalizability of the findings. Additionally, one study that focused on
physical disabilities but included one blind woman made no distinc-
tion in the findings; instead, all disabilities were classified as physical
(Tarasoff, 2017). Limited data on women with sensory disabilities may
be responsible for the rating of findings with moderate or insufficient
evidence.
Conclusion
This review demonstrates that women with physical disabilities con-
tinue to encounter several barriers in accessing maternity care related
to inaccessible care settings, and lack of knowledge and negative atti-
tude of healthcare providers. Care must be tailored to these women’s
needs and characteristics, and healthcare providers should be trained to
be aware of the specific needs of women with physical and sensory dis-
abilities. To this end, training should be developed and evaluated using
the MRC framework.
Declaration
Conflict of interest: None declared
Ethical Approval: Not applicable
Funding Sources: This research did not receive any specific grant
from funding agencies in the public, commercial, or not-for-profit sec-
tors.
Clinical Trail Registry and Registration number: Prospero ID 152816.
Supplementary materials
Supplementary material associated with this article can be found, in
the online version, at doi:10.1016/j.midw.2021.102938.
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 Midwifery 107 (2022) 103273

Contents lists available at ScienceDirect

Midwifery
journal homepage: www.elsevier.com/locate/midw

Review Article

Access to, and experiences of, maternity care for women with physical
disabilities: A scoping review
Amanda Blair a,∗, Jenny Cao a, Alyce Wilson b, Caroline Homer b
a
School of Population and Global Health, The University of Melbourne, 207 Bouverie St, Carlton, VIC 3053, Australia
b
Burnet Institute, 85 Commercial Rd, Melbourne, VIC 3004, Australia

a r t i c l e i n f o a b s t r a c t

Article history: Objective: Women with physical disabilities face multiple barriers in accessing safe, respectful and ac-
Received 9 July 2021 ceptable healthcare. As the number of women with physical disabilities becoming pregnant rises, en-
Revised 2 February 2022
suring their access to acceptable and high-quality maternity care becomes increasingly important. This
Accepted 3 February 2022
review aimed to explore the most recent evidence regarding access to, and experiences of, maternity
care for women with physical disabilities in high-income countries.
Keywords: Design: A scoping review was undertaken as guided by the Preferred Reporting Items for Systematic Re-
Physical disability views extension for scoping reviews (PRISMA-ScR). A systematic search of five online databases identified
Maternity care relevant articles published in English from 20 0 0 to 2020. Reference lists of included studies were also
Perinatal care
screened, and quality was appraised using the Joanna Briggs Institute Checklists. A thematic synthesis
Pregnancy
was undertaken to develop descriptive and analytical themes.
Health service accessibility
Scoping review Findings: After screening, 27 articles from eight high-income countries were included. All articles were
identified as having moderate or high methodological rigour in the quality appraisal. Women with phys-
ical disabilities reported numerous barriers in accessing maternity care and described predominantly
mixed and negative experiences of care. These findings were grouped under three major themes: women
with physical disabilities want a “normal” pregnancy experience; the need to strengthen maternity
provider’s disability knowledge and skills; and promoting enabling environments for improved access
to, and experiences of, maternity care.
Key conclusions and implications for practice: This review found that for women with physical disabili-
ties access to, and experiences of, maternity care is suboptimal. Improving maternity providers disabil-
ity knowledge and awareness, increasing the availability of support services for women, and increasing
person-centred care through organisational policies and provider training may help to address the in-
equities women with disabilities face in accessing high-quality maternity care.
© 2022 The Authors. Published by Elsevier Ltd.
This is an open access article under the CC BY-NC-ND license
(http://creativecommons.org/licenses/by-nc-nd/4.0/)

Background dence of pregnancy for women with disabilities is thought to be

Access to, and experiences of, maternity care for women with
physical disabilities is a topic of increasing interest and importance
as the number of pregnancies and births in this population group
increases (Iezzoni et al., 2015a; Tarasoff et al., 2020). It is estimated
that 12.6% of women aged 15 to 59 years in high-income countries
live with a moderate or severe disability (World Health Organisa-
tion, 2011) and it has been estimated that 9.4% of women in the
United Kingdom who had recently given birth had one or more
conditions causing disability (Šumilo et al., 2012). The rise in inci-
∗
Corresponding author.
E-mail address: amanda@amandakwood.com (A. Blair).
the result of improved societal acceptance of people with disabil-
ities, increased awareness of sexuality in people with disabilities,
reduced practices of forced sterilisation, and improvements in, and
access to, assistive reproductive technologies (Iezzoni et al., 2013).
Many women with disabilities still experience multiple forms of
discrimination and barriers that restrict their ability to participate
fully in society and reach their utmost potential (World Health Or-
ganisation, 2011). Barriers contributing to reduced quality of life in
women with disabilities include low levels of employment, high
rates of domestic violence, and reduced access to facilities includ-
ing health services (Bradbury-Jones et al., 2015; Krahn et al., 2015;
World Health Organisation, 2011). Physical disabilities, in particu-
lar, involve a physical impairment that alters or reduces mobility,

https://doi.org/10.1016/j.midw.2022.103273
0266-6138/© 2022 The Authors. Published by Elsevier Ltd. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/)
A. Blair, J. Cao, A. Wilson et al.
strength or endurance that when combined with unaccommodat-
ing environments and societies, limits participation in everyday ac-
tivities and access to healthcare (Wen and Fortune, 1999).
A social model of disability supports creating accommodating
environments and societies that better support the needs of in-
dividuals with impairments. In order for improvements in care,
it is critical that barriers faced by women with physical disabil-
ities in accessing safe, high quality maternity care are identified
and understood. Under the Universal Right of Childbearing Women
Charter all childbearing women have the right to access safe, eq-
uitable, high quality maternity care and to be treated with dig-
nity and respect throughout all pregnancy and birthing experi-
ences (White Ribbon Alliance, 2011). This Charter applies equally
to women with physical disabilities and is further backed by
The Convention on the Rights of Persons with Disabilities (CRPD)
(United Nations, 2007). Article 23 of the CRPD, “Respect for home
and the family” specifies the right of persons with disabilities
to access appropriate information and reproductive health ser-
vices free of discrimination (United Nations, 2007). All dimen-
sions of access (accessibility, affordability, availability, accommoda-
tion and acceptability) have the potential to impact women’s ex-
periences of maternity care and individuals belonging to one or
more minority groups including disability are likely to face addi-
tional barriers in accessing care and having positive care experi-
ences (Penchansky and Thomas, 1981; Peterson-Besse et al., 2014;
World Health Organization, 2020).
An understanding of the experiences of women with disabili-
ties in accessing maternity care is important to ensure the needs
of these women are met. Nguyen et al. (2019) recently explored ex-
periences and challenges faced by women with physical disabilities
in accessing maternity care in low- and middle-income countries,
however, there has not been a review in high-income countries for
a number of years. The most recent review that included countries
part of the Organisation for Economic Co-operation and Develop-
ment (OECD) was published in 2013 (Lawler et al., 2013). Given
the amount of research in the disability field has increased in re-
cent years, this review was in need of updating. As such, the aim
of this review was to identify and provide an overview of the most
recent evidence regarding the access to, and experiences of, mater-
nity care for women with physical disabilities in countries that are
part of the OECD.
Methods
The scoping review methodology outlined in Arksey and
O’Malley’s (2005) scoping review framework and expanded by
Levac et al. (2010) was used. This approach enabled us to
map the evidence currently available and build an analytical
summary stemming from multiple study designs (Sucharew and
Macaluso, 2019). A research protocol was created a priori (available
on request) in accordance with the PRISMA extension for Scoping
Reviews (Tricco et al., 2018).
The Population, Concept, Context (PCC) framework was used
to formulate search terms, inclusion and exclusion criteria. Multi-
ple study designs were eligible for inclusion including qualitative
studies, retrospective or prospective cohort studies, randomised
controlled trials, case-control studies, cross-sectional studies, case
series, and program/service evaluations. Grey literature, includ-
ing commissioned reports, were also eligible for inclusion if they
utilised these study designs. Editorials, commentaries, conference
proceedings without primary data, and expert opinions were ex-
cluded as these generally do not follow a rigorous methodology or
have usable data. Searches were restricted to research published
since the year 20 0 0 in order to be relevant to today’s healthcare
experiences and must be available in English.
2
Midwifery 107 (2022) 103273
Fig. 1. PRISMA flow diagram of study selection process.
In addition to these criteria, study results had to come from
the perspective of women with physical disabilities. The women’s
perspective was purposively chosen for two reasons. Firstly, it is
integral that women remain central in conversations regarding
care delivery, service evaluation and improvement (Brady et al.,
2019). Secondly, the unique needs of people with disability are
most authentically explained by those with lived experience of
disability. The notion of ‘nothing about us without us’ illustrates
the importance of including people with disability in research
(Charlton, 1998; Smith-Merry, 2017). An overview of all inclusion
and exclusion criteria can be seen in Table 1. The search was con-
ducted on five databases: MEDLINE (Ovid), EMBASE (Ovid), CINAHL
(EBSCO), SCOPUS, and Web of Science Core Collection.
A total of 491 studies were identified from the database search
and imported to the review management software Covidence for
screening. Initially, 97 duplicates were identified and removed
leaving 394 studies. The titles and abstracts of these studies were
screened independently by two reviewers (AB and JC). Any dis-
agreements were resolved after discussion between the two re-
viewers. At this stage of the review, 362 of the studies were ex-
cluded. Common reasons for exclusion included the focus on dis-
ability in newborns (not the mothers) and studies not being spe-
cific to maternity care or people with a physical disability. This
left 32 studies for full-text screening. Discrepancies were again dis-
cussed between the two reviewers and where required a third re-
viewer (CH) assisted to reach a consensus. At full-text screening,
17 studies were excluded for the following reasons: eight were not
specific to physical disability, three were not specific to maternity
care, three had an ineligible study design (two commentary pieces
and an abstract), two were not from the woman’s perspective, and
one full text article was not available. Ultimately, 15 studies were
identified for inclusion in the review. The reference lists of these
15 articles and one systematic review excluded during the screen-
ing process were hand searched by first author (AB), identifying an
additional 12 articles. These articles were independently screened
and approved by second reviewer JC leaving a total of 27 articles
included in the review. The PRISMA flow diagram in Fig. 1 sum-
marises the study selection process.
We undertook a quality appraisal to assess the quality of ev-
idence in the included studies. The JBI Checklist for Qualitative
Research was used to appraise the qualitative studies in the re-
view, while the JBI Checklist for Analytical Cross Sectional Stud-
A. Blair, J. Cao, A. Wilson et al. Midwifery 107 (2022) 103273

Table 1
Inclusion and exclusion criteria for scoping review.

Criteria Inclusion Exclusion

Population Childbearing people with a physical disability
Concept Access and experiences of maternity care including:
- Antenatal care
- Ultrasound and pregnancy screening services
- Planned mode of birth and place of birth
- Care during labour and birth
- Type of pain management in labour
- Initiation of breastfeeding
- Length of hospital stay
- Postnatal care in hospital and the community
- Healthcare providers involved
Childbearing people with other primary disability types
(intellectual, mental, sensory)
Studies measuring other aspects of maternity care
including health outcomes.
- Services excluded:
- Family planning services
- Assisted reproductive technology services
- Postnatal services beyond 6 weeks after birth

Context OECD member countries as of September 2020 Non-OECD member countries.

Study types - Qualitative study - Editorials
- Retrospective or prospective cohort study - Commentaries
- Randomised controlled trial - Conference proceedings
- Case-control study - Case studies
- Cross sectional study - Expert opinions
- Case series - Previously conducted reviews
- Program/service evaluation
- Grey literature including commissioned reports

Language restrictions Published in English Publications not available in English

Publication dates 2000 - September 2020 Before and including 1999, and after September 2020
Perspective of results Women with a physical disability - Maternity care providers
- Family members or carers of women with a physical
disability

ies was used for the remaining studies (The Joanna Briggs Insti-
tute, 2017, 2020). These tools are considered to have high validity
for appraisal of their respective study types (Hannes et al., 2010;
Ma et al., 2020). Second reviewer (JC) appraised five randomly se-
lected studies to check inter-rater reliability of AB who appraised
all studies. As the JBI checklists do not provide minimum recom-
mended overall quality scores, it was decided during protocol de-
velopment that articles satisfying less than 60% of checklist items
would be excluded from the review. All articles satisfied between
63% and 100% of checklist items (see Table 2), thus none were ex-
cluded based on quality.
A data extraction form was used to collect the following study
characteristics: author, publication year, location, study aim(s),
methodology, participant number and characteristics, key findings,
study strengths and limitations. During data extraction ‘key study
recommendations’ was added as an additional data field. Data ex-
traction was performed by AB.
The thematic synthesis process developed and described by
Thomas and Harden was employed for data analysis (Thomas and
Harden, 2008). Thematic synthesis is primarily used for reviews
in the public health and health promotion fields where top-
ics of healthcare experiences commonly require qualitative syn-
thesis (Finlayson et al., 2020; Harden et al., 20 06, 20 04). Af-
ter reading all articles in full, AB first coded the data line-by-
line. Next, patterns in the coding framework were recognised
and became the basis for the descriptive themes. Descriptive
themes were discussed with another author (CH) and revised
before overarching analytical themes were formed. After further
reading of the articles and discussions between the authors, the
analytical and descriptive themes were finalised and support-
ing quotes were identified with the assistance of NVivo soft-
ware. As the quantitative studies included in the review used het-
erogenous outcome measures a meta-analysis could not be per-
formed. Instead, data from all five cross-sectional studies were
categorised according to the descriptive themes developed in the
thematic synthesis to provide further support of the qualitative
findings.
Results
Ultimately, 27 articles from 22 separate studies were included.
Eight articles were generated from three study samples and all
were included due to their unique and different focuses. Of the
27 articles, 22 were qualitative, including individual or focus group
discussion data, whilst five were cross-sectional studies and in-
cluded postal, online or telephone survey data. Articles were from
the following countries: Austria (n = 1), Canada (n = 4), England
(n = 1), Ireland (n = 2), New Zealand (n = 2), Scotland (n = 1),
Switzerland (n = 1), Turkey (n = 1), United Kingdom (n = 4),
United Kingdom and Ireland (n = 1), and United States (n = 9)
(see Table 2). The majority of participants in the studies were ur-
ban dwelling and well-educated women. Many studies listed low
ethnic diversity as a study limitation.
Thematic synthesis yielded 10 descriptive themes, assisting the
development of three analytical themes (Fig. 2). In the proceeding
discussion analytical themes are italicised and bolded, while de-
scriptive themes are bolded.
Women with physical disabilities want a “normal” pregnancy
experience
Overall, women reported a desire to be cared for in a simi-
lar, if not identical, manner to those without disabilities. They re-
ally wanted to just fit in. Some women reported feeling singled
out and labelled as high-risk on account of their disability. They
resented this label, particularly when it was not medically indi-
cated as it increased their anxiety levels in regard to the health of
themselves and their baby, increased appointment and screening
frequency, and restricted their choice of place and mode of birth.
However, some women indicated that being treated differently ac-
tually resulted in additional care and consideration provided, for
example:

3
 A. Blair, J. Cao, A. Wilson et al.
Table 2
Characteristics and quality appraisal scores of included articles.

First Author (year), Study design and Quality appraisal score

location Study aims methodology Participants Key Findings Study strengths Study limitations (percentage)

Begley (2010), Ireland To explore the Qualitative, descriptive 78 women with a 5 main themes: Women interviewed Possible self-selection 9/10 (90%)
strengths and study. Third and final disability, 18 of these within 2 years of giving bias.
weaknesses of Ireland’s phase of a mixed had a physical disability. - Availability birth (probable good
publicly funded methods Nation-wide Most women (63%) lived recall of memories and
Lack of individualised care,
maternity services study. in an urban setting. reflects on the current
medicalised models of care.
provided for women Individual interviews Physical disability healthcare context).
with disabilities with women with causes: multiple - Accessibility Includes detailed and
disability and focus sclerosis, cerebral palsy, actionable
groups with relevant spina bifida, and Physical accessibility of recommendations at the
maternity health care acquired physical buildings and equipment better policy, organisational,
providers. disabilities. in new facilities. and individual levels.
- Accommodation

Continuity of care important.

Antenatal classes not
accommodating individual
educational needs.

- Acceptability and attitudes

Encounters with providers

4

varied from discriminatory, to

supportive. Provider knowledge
lacking.

- Affordability

Transportation costs high for

women.
Bertschy (2015), To identify the Open qualitative 17 women who had - Identified the need for One researcher had a Some participants gave 9/10 (90%)
Switzerland perceived maternity research design given birth with improved access to lived experience with birth up to 15 years ago.
service needs of involving four focus paraplegia or integrated care. physical disability This long recall time
women with spinal groups and five quadriplegia. - Women had difficulties providing a unique may produce less
cord injury (SCI) in individual finding providers with perspective to the accurate data and the
Switzerland and semi-structured knowledge in both analysis. experiences may not
reconstruct their interviews. gynaecology and paraplegia. Small focus group sizes reflect the current
healthcare service Content analysis of data. - Pre-existing patient-provider used to facilitate rich context.
utilisation. relationships helped and personal Self-selection bias.
optimise care. discussions. Highly educated sample
- Women saw no extra benefit with half employed in
in services specialised for healthcare.
women with SCI, preferring

Midwifery 107 (2022) 103273

to attend local services and
regular maternity hospitals.

(continued on next page)

 A. Blair, J. Cao, A. Wilson et al.
Table 2 (continued)

First Author (year), Study aims Study design and Participants Key Findings Study strengths Study limitations Quality appraisal score
location methodology (percentage)

Blackford (2000), To determine how Descriptive, exploratory 8 mothers with a - Mothers not receiving First study in Canada to Small sample size. 7/10 (70%)
Ontario Canada prepared prenatal study using qualitative disability and at least sufficient or appropriate focus on prenatal Ethics approval not
nurse educators are to interviews. one child under the age information from their education for women reported in article.
meet the learning Qualitative content of two. nurse educators about their with disabilities.
needs of mothers with analysis undertaken. Physical disabilities pregnancy, chronic illness,
disabilities. included: rheumatoid and postnatal care.
arthritis, lupus and Wolf - Mothers feel nurses doubt
Parkinson-White their ability to make
Syndrome. decisions and to be
responsible mothers.
- Nurses not acting as
advocates for special
services required by
mothers.
5

Bradbury-Jones (2015), To explore how women Qualitative methodology 5 women all with more - Four domains identified as Limited prior research Difficulties in 9/10 (90%)
Scotland with a disability who utilising the Critical than one child. important in shaping on this hard-to-reach recruitment led to small
are domestically abused Incident Technique. Disabilities included: maternity care experiences: population. sample size (50% of
approach maternity Individual interviews congenital physical attitudes, knowledge, social Strong theoretical intended sample size).
services and their conducted face to face, impairments, acquired norms, and perceived underpinning.
expectations of these over Skype, or via email physical impairment, control. Allowing flexibility in
services. as preferred by and long-term mental - Positive staff attitudes help interview media (not
participants. health conditions empower women to have only face to face)
(results from mental control of their maternity increased participation.
health participants care.
excluded). - Fear of judgement and loss
of control negatively impact
women’s care experiences.
- Accessible and inclusive
information meeting the
additional needs of these
women is lacking.

(continued on next page)

Midwifery 107 (2022) 103273

 Table 2 (continued)

First Author (year), Study aims Study design and Participants Key Findings Study strengths Study limitations Quality appraisal score

A. Blair, J. Cao, A. Wilson et al.

location methodology (percentage)

Guerin (2017), New To seek consensus from Third and final phase of 20 women with a The seven recommendations Provides a prioritised list Only 53% of phase one 7/10 (70%)
Zealand women with a mixed methods study sensory disability ranked highest by women: of actionable participants went on to
disabilities on priority (the qualitative first and (excluded from review) recommendations. participate in phase 3
strategies to improve second phases are or physical disability. 1 Make relevant information representing a low
pregnancy, childbirth described under This was a sub-set of the more accessible for women response rate.
and early childcare Payne et al. 2014). sample from Payne, and health professionals. Possibility of
health outcomes. Using a Modified Delphi 2014 s phase one cohort. 2 Address professional self-selection bias.
Technique participants All phase one knowledge deficits. Low ethnic diversity.
were asked over email participants were invited 3 Address home help
to rank the 11 to participate. provision.
recommendations about Physical disabilities 4 Ensure appropriate funding
improving maternity included: multiple to reduce inequity.
care for women with sclerosis, muscular 5 Foster better inter-sectorial
disabilities derived from dystrophy, rheumatoid communication and
the Payne, 2014 findings. arthritis, spinal cord improved cohesion of
The mean ranking for injury, epilepsy, services.
each recommendation paraplegia, motor 6 Address professional
was achieved by neurone disease, and attitudinal behaviours.
calculating an average of severe traumatic brain 7 Address physical barriers.
the ranks allocated by injury.
participants. The top Urban and rural living
seven ranked women were
recommendations were represented in line with
reported. New Zealand’s
population distribution.
Payne (2014), New To investigate the Phases 1 and 2 of a 62 women with a Two overarching themes Relatively large Participants were 9/10 (90%)
Zealand maternity care 3-part mixed method sensory (results identified, with multiple qualitative sample size. self-selected and
experiences of women study. excluded from review) sub-themes.Theme 1: Service Two phases allowed therefore those with
6

with physical or Post-positivist, or physical disability. provision issues confirmation of phase particularly strong
sensory disabilities in qualitative descriptive 22 women participated one findings. and/or negative
New Zealand, alongside study involving in interviews, 26 in - Becoming an educator Included member experiences may have
the experiences of individual focus groups. Women needing to educate checking. been more inclined to
maternity care semi-structured Purposive sampling used their providers. participate
providers, to identify interviews and focus with recruitment via key - Encountering disabling (self-selection bias).
strategies to facilitate groups. disability organisations environments
improvements in and maternity providers.
Lack of accessible equipment
maternity care. Urban and rural living
and supportive providers.
women were
represented in line with - Disabling attitudes
New Zealand’s
population distribution. Negative provider
Physical disability types attitudes.Theme 2: Taking it into
included as for Guerin, account
2017 with the addition
- Becoming informed
of stroke, brain tumour,
brain stem injury, Women wanting maternity and
cerebral palsy, and spina disability providers to increase
bifida. their knowledge.

Midwifery 107 (2022) 103273

- Problem solving

Women appreciate providers

using innovative solutions to
issues that arise during their
care.

- Thinking ahead

Foreseeing issues in advance

and planning for these.
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 A. Blair, J. Cao, A. Wilson et al.
Table 2 (continued)

First Author (year), Study aims Study design and Participants Key Findings Study strengths Study limitations Quality appraisal score
location methodology (percentage)

Gul (2019), Turkey To determine fertility Descriptive study. 181 women with
characteristics and Answers to closed, different disability types,
problems experienced quantitative questions 103 with an
by women with collected via face-to-face orthopedically disability.
disabilities in two interviews. For all participants:
districts of Turkey. 88.4% lived in rural areas
51.4% were over 35
years of age
Average age at first
pregnancy 22.7 years
86.2% were not
employed
77.9% were married
Average parity 3.2
children.
This sample represents a
more rural and less
employed demographic
compared to the
remaining studies in
review.
7
67% of women with an Participant Reporting of 5/8 (63%)
orthopaedic disability reported characteristics different methodology (sampling,
problems during pregnancy due to the other studies recruitment, data
to their disability.The two most included in review, collection methods) brief
common causes of problems providing a different or missing.
were: perspective for an OECD
country.
- Restricted mobility requiring
dependence on other
people.
- Lack of communication with
healthcare personnel.
59.1% of women with an
orthopaedic disability
encountered problems during
delivery/birth.The most common
problems were:
- Inappropriate physical
conditions in the healthcare
facility.
- Inability to use disabled part

of the body requiring

support from someone else.
- Lack of communication with
healthcare personnel.

Hall (2018), United To explore the Exploratory design using 37 women with a
Kingdom and Ireland experiences of dignity an accessible disability, 19 of these
and respect in internet-based survey with a physical
childbirth for women with open and closed disability.
with a disability. questions. 60% received shared
antenatal care between a
midwife, general
practitioner and/or
obstetrician). 78%
birthed in an obstetric
unit.
Physical disabilities
described by most
women as
musculoskeletal
problems including
Only qualitative findings
included here as quantitative
results were not separated by
type of disability.Key themes:
- Lack of maternity care
provider awareness and
attention to the impact of
disability on pregnancy.
- The need for continuity of
care.
- Perception of reduced care
choices (women’s choices
overruled by care providers).
- Care providers need for
increased information on
First known study to Self-selected, 7/10 (70%)
directly look at dignity convenience sample can
and respect in may lead to selection
pregnancy/childbirth for bias with the authors
women with disability. suspecting
over-representation of
women with negative
maternity care
experiences.
Quantitative data not
separated by disability
type.

Midwifery 107 (2022) 103273

arthritis, joint problems
and hypermobility.
77% had 1 or 2 children
(parity range 0–4)
disability.
- Dignity and respect.
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 Table 2 (continued)

A. Blair, J. Cao, A. Wilson et al.

First Author (year), Study aims Study design and Participants Key Findings Study strengths Study limitations Quality appraisal score
location methodology (percentage)

Hayward (2017), United To determine if Cross sectional survey 375 women diagnosed During pregnancy: Multiple accessibility Older participants (up to 7/8 (88%)
States pregnancy rates and implemented with cerebral palsy of options of completing 66 years) likely recalling
discussions about predominantly online varying severity. Only 76 - 71% of women reported survey allowed women maternity experiences
pregnancy with with paper and of these reported current decreased mobility however with varying severities from 15+ years ago. This
healthcare providers for telephone options or previous pregnancies referrals to physiotherapists of cerebral palsy to may not reflect the
women with cerebral available. (results from women and occupational therapists participate. current context and
palsy are related to who had never been were rare (15.9% and 7.9% memories may not be
their functional levels. pregnant are excluded respectively). accurate.
from this review). - Most frequently offered Possible response bias
For women who had referrals were to nutrition when survey completed
been pregnant: programs (39.5%) and with assistance from
All had completed high genetic screening (30.3%). carer, however this
school with 88% - Only 11.8% were offered allowed those requiring
attending/completing a mental health services. assistance to participate
higher degree and have their voice
Postpartum services offered:
48.7% were employed or heard.
self-employed - Breastfeeding education
16.6% were unable to (69.2%).
work. - Family planning options
(47.7%).
- Physiotherapy (4.6%).
- Support groups for mothers
with disabilities (3.1%).
- No services offered (15.4%).

Overall, higher functioning and

higher educated women were
8

offered services more frequently.

Iezzoni (2015b), United To gather experiences Qualitative, descriptive 22 women with a - Less than half of the Uncovered an important Low ethnic diversity 7/10 (70%)
States women with mobility study involving in-depth, physical disability. Mean women’s obstetricians had finding that women in represented.
disabilities have with semi-structured age 34.8 years. access to height adjustable wheelchairs are not Possible self-selection
prenatal services’ telephone interviews. All women used examination tables. being routinely weighed bias. Authors believe
physical accessibility mobility assistive - Women found being lifted during pregnancy. This women with negative
and equipment. devices or had limited onto non-adjustable tables, represents substandard experiences more
arm/hand movement at scary and humiliating, care requiring urgent inclined to participate.
the time of pregnancy. particularly when done by rectification. Some women had their
Disability types staff. youngest child up to 10
included: arthogryposis, - Some women were not years ago. Recall of
cerebral palsy, physically examined or were memories possibly
Charcot-Marie-Tooth examined in their inaccurate.
disease, congenital wheelchair.
myasthenia, muscular - No women were weighed
dystrophy, osteogenesis routinely throughout
imperfecta, spina bifida, pregnancy due to a lack of
incomplete spinal cord accessible scales. This
injury with caused anxiety in many
mitochondrial disease, women and made

Midwifery 107 (2022) 103273

congenital absence of medication dosage
multiple limbs, and calculations difficult/
trauma related bone inaccurate during labour.
injuries.
Highly educated, 20 of
the 22 women having
started or complete a
college or graduate
degree.
(continued on next page)
 A. Blair, J. Cao, A. Wilson et al.
Table 2 (continued)

First Author (year), Study aims Study design and Participants Key Findings Study strengths Study limitations Quality appraisal score
location methodology (percentage)

Iezzoni (2017), United To determine what new See Ieozzoni, 2015. See Ieozzoni 2015. Women had five main Unique perspective of See Ieozzoni, 2015. 7/10 (70%)
States mothers with a recommendations for other women with disability
mobility disability women considering pregnancy: providing
would recommend to recommendations to
their peers considering - Recognising the possibility of their peers.
pregnancy in the future giving birth
about the various
Pregnancy and motherhood is
aspects of the
achievable with formal and
pregnancy experience.
informal supports.

- Advocacy and support

Self-advocating for maternity

care preferences and support
needs required.

- Being informed and

9

information sources

Educating oneself to facilitate

informed care decisions. A lack
of information increased
women’s anxiety. Peers are a
trusted source of information.

- Approaches toward obstetrical

practitioners

Seek providers/facilities that

consider and accommodate
individual needs. Those with
prior experience caring for
women with disability preferred.

- Managing fears about losing

custody of their child.

(continued on next page)

Midwifery 107 (2022) 103273

 A. Blair, J. Cao, A. Wilson et al.
Table 2 (continued)

First Author (year), Study aims Study design and Participants Key Findings Study strengths Study limitations Quality appraisal score
location methodology (percentage)

Smeltzer (2017), United To explore the labour, See Ieozzoni, 2015. See Ieozzoni 2015. Four key themes regarding Focus on only one See Ieozzoni, 2015. 7/10 (70%)
States birth, and anaesthesia labour and birth: segment of maternity
experiences of women care (labour and
with physical - Women’s preferences for type anaesthesia) allows the
disabilities with the of delivery authors to delve into
aim of guiding great detail.
Birth choices often made in
improvements in their
consultation with care providers.
obstetrical care.
Fear of being pressured into
decisions that are not medically
indicated.

- Clinician’s and some women

expecting no labour pain

Incorrect provider assumptions

of what women will feel during
labour.

- Fears prompting active

advocacy

Women educating themselves to

facilitate self-advocacy due to a
10

fear of lack of provider disability

knowledge.

- Positive experiences

For women with providers who

answered questions and
provided trusted input.Four
themes regarding anaesthesia:

- Importance of consultation
with the anaesthesia team

Discussing options, fears and

preferences.Decisions about
epidural/spinal vs general
anaesthesiaNot always made in
consultation with the woman.

- Failed epidural with repeated

efforts.

Frightening and painful

Midwifery 107 (2022) 103273

- Fear of injury related to
anaesthesia.

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 A. Blair, J. Cao, A. Wilson et al.
Table 2 (continued)

First Author (year), Study aims Study design and Participants Key Findings Study strengths Study limitations Quality appraisal score
location methodology (percentage)

Lipson (2000), United To examine the Exploratory and 12 women with Women’s experiences were One member of the Recruitment and 8/10 (80%)
States pregnancy, labour, descriptive qualitative mobility-limiting influenced by personal and research team has a sampling methods not
birth, and postpartum study involving disabilities who had healthcare system factors lived experience with a reported.
experiences of women semi-structured given birth over the past including: physical disability Ethics approval not
living with interviews. two years. providing a unique stated.
mobility-limiting Disability types - The specific disability perspective.
disability and to included: cerebral palsy, Positive and negative
Women with invisible
understand their spina bifida, dwarfism, maternity care
disabilities felt less supported.
satisfaction with multiple sclerosis, and experiences
healthcare services permanent injuries from - Resource availability acknowledged,
during these periods. accidents. recognising both types
Low access to relevant of experiences can assist
pregnancy and baby care in planning service
information. improvements.
- Individual approach to
pregnancy and childbirth
11

Assertive women who advocated

their care preferences had more
satisfying care experiences.

- Structural and political

factors

Experiences negatively impacted

by lack of communication
between maternity and
disability providers, and low
referral rates to allied health
services.

- Negative provider attitudes

towards women with
disability, and a lack of
disability knowledge.

(continued on next page)

Midwifery 107 (2022) 103273

 Table 2 (continued)

A. Blair, J. Cao, A. Wilson et al.

First Author (year), Study aims Study design and Participants Key Findings Study strengths Study limitations Quality appraisal score
location methodology (percentage)

Long-Bellil (2017), To explore the pain Descriptive qualitative 25 mothers with a Pain relief experiences varied Previous studies Some women gave birth 8/10 (80%)
United States relief experiences of approach as part of a physical disability. greatly. Some women were able regarding pain relief up to ten years ago, long
women with physical larger mixed methods Disability types to choose their method of relief, focus on clinical recall time may affect
disabilities during study (alongside Mitra, included: dwarfism, while others faced systemic outcomes rather than accuracy of memories
labour and childbirth 2016, and Smeltzer, muscular dystrophy, barriers to explore pain relief the experiences of and experiences may not
with the goal to inform 2016). spinal muscular atrophy, options. women as this study reflect the current
future care. Semi-structured osteogenesis imperfecta, Many anaesthesiologists does. context.
interviews conducted cerebral palsy, encountered lacked experience Possible self-selection
over telephone amputation, spinal cord and knowledge in treating bias. Those with high
injury, stroke, spina women with disabilities. social media
bifida, and multiple Being able to plan pain relief presence/more support
sclerosis. options in conjunction with likely over-represented
72% used assistive healthcare providers in advance due to recruitment
technology devices. increased positive labour method.
60% had planned experiences for women. Low ethnic diversity.
pregnancies.
80% had present in their
child’s lives.
92% had started or
complete a college or
graduate degree.
Mitra (2016), United To examine the unmet See Long-Bellil, 2017. See Long-Bellil, 2017. Three key themes: Participants contributed Self-selection bias 7/10 (70%)
States healthcare needs of their own possible with
women with physical - Clinician knowledge and recommendations convenience sampling.
disabilities around the attitudes providing an important Women with more
time of pregnancy and perspective to improve social-media
Lack of awareness of the effect
provide maternity care services. connections/
disability has on
12

recommendations to support likely

pregnancy.Attitudes varied
similar women who are overrepresented due to
greatly from supportive to
contemplating recruitment methods.
disrespectful.
pregnancy. Low ethnic diversity.
- Physical accessibility of
healthcare facilities and
equipment.
- The need for information
regarding pregnancy and
postpartum supports.

Smeltzer (2016), United To explore the perinatal See Long-Bellil, 2017. See Long-Bellil, 2017. Three main themes: Women provided Possible self-selection 7/10 (70%)
States experiences women recommendations to bias. Women on
with physical - Clinicians’ lack of knowledge improve the quality of social-media with more
disabilities have with about pregnancy related care aimed at the level supports possibly
their maternity care needs of women with of the individual over-represented.
providers physical disabilities clinicians. Up to 10 year recall for
some participants.
Women appreciate rectify
knowledge gaps through
education.

Midwifery 107 (2022) 103273

- Clinicians’ failure to consider
women’s knowledge,
experience, and expertise
about their own disabilities.
- Clinicians’ lack of awareness
of the reproductive concerns
of women with physical
disabilities.

(continued on next page)

 Table 2 (continued)

First Author (year), Study aims Study design and Participants Key Findings Study strengths Study limitations Quality appraisal score
location methodology (percentage)

A. Blair, J. Cao, A. Wilson et al.

Malouf (2017), England To investigate access to Secondary analysis of 20,094 new mothers in Women with a physical Large sample size, Low survey response 7/8 (88%)
and quality of National postal survey total, 1958 of whom had disability compared to women increasing rate (41.2%).
maternity care for data as part of a some type of disability with no disability were less generalisability of Women using private
women with various structured (9.5%), of which 873 had likely to:Be spoken to in a way results. care settings excluded.
disabilities and to cross-sectional study a physical disability they could understand during Participant’s gave birth
identify differences design. (4.8%). antenatal appointments. within the past three
and/or gaps in care to Survey repeated every Women with a physical months (short recall
be addressed. few years, previous disability were more - Be involved in care decisions time).
survey results reported likely to be 35 years or during appointments and Repeated study with
in Redshaw 2013 study. older compared to during labour. modifications allows
women with no - Have trust in the staff caring comprehensive
disability (38.7% for them during labour. assessment of maternity
compared to 32.5%). - Feel they were treated with care and tracking of
respect by staff. changes over time.
- Have a choice in the place
they gave birth.
- Be given support and advice
regarding feeding the baby
postnatally.

Women with a physical

disability were more likely
compared to women with no
disability to receive attention
from providers in a reasonable
amount of time during labour
(but not postnatally).
McKay-Moffat (2006), To explore the views Qualitative design 5 women with physical Five themes from the mother’s Interviewing both Small sample size. 9/10 (90%)
United Kingdom and experiences of forming the first of a disabilities who had data: mothers and midwives
13

childbirth for mothers two-stage given birth to their allowed for a

with disabilities, mixed-methods study. youngest child within - The quest for normality and comparison, and in this
alongside the Active interview process the past 3. independence case confirmation, of
experiences of the utilised. Disability types themes.
Not wanting disability to be the
midwives who care for Themes generated from included: arm paralysis
focus of maternity care.
them. data from the interviews post road accident,
with women with below knee amputation - The disability as paramount
disability were due to vascular disease,
compared to themes cerebral palsy, multiple Some women self-conscious
generated from sclerosis, and abnormal about disability leading to
interviews with pelvis/gait pattern. decreased participation in
midwives. Only results All women were parenting classes.
from the women with employed and had
- Midwives’ lack of disability
disability included in complete secondary
knowledge
this review. school or more.
Three women were Leading to inadequate care and
married, one divorced, support.
and one single.
80% of pregnancies were - The need for midwives to
planned. have disability awareness and
positive attitudes

Midwifery 107 (2022) 103273

Interactions with midwives
varied from respectful to
insensitive.

- The importance of effective

communication

Clear communication between

midwives and women reduces
anxiety and increases
satisfaction.
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 A. Blair, J. Cao, A. Wilson et al.
Table 2 (continued)

First Author (year), Study aims Study design and Participants Key Findings Study strengths Study limitations Quality appraisal score
location methodology (percentage)

Mercerat (2020), To understand the Qualitative design with a 13 parents with physical - Women want to be Study focussed on needs Well educated sample. 8/10 (80%)
Quebec Canada experiences and needs narrative approach. disability including considered normal during of parents rather than Authors believe this may
of parents with physical In-depth individual mothers, and 3 fathers pregnancy and motherhood. just experiences. have skewed results
disabilities in relation interviews conducted (fathers results excluded - Current maternity services Looked beyond common towards more favourable
to public healthcare face to face of over from this review). not meeting all the needs of maternity services to perinatal experiences.
perinatal and early telephone in native Mothers disability types this population group. The other supports and
childhood services in French language. included: arthrogryposis, main issues involve poor services participants felt
Quebec, Canada. cerebral palsy, chronic access to appropriate they required.
pain, degenerative information, and negative
disease, multiple health provider attitudes.
sclerosis, rheumatoid - Mixed reactions to being
arthritis, spina bifida, labelled ‘high risk’ when not
spinal cord injury. medically justified. Some
For all participants: find the close follow up
69% had complete a reassuring, while others find
university degree. it anxiety inducing.
- Women emphasised the
importance of being listened
to, reassured and remaining
in control of care decisions.
14

Mitra (2017), United To examine pregnancy Analytical survey 126 women with a - 53.2% of survey respondents First national survey in Convenience sampling 8/8 (100%)
States and prenatal completed physical disability. found their physical the United States to leading to possible
experiences and needs predominantly online 84% reported difficulty disability a big factor in explore the unmet self-selection bias.
of mothers with with a telephone option walking before their first selecting a maternity care prenatal care needs and Recall bias possible as
physical disabilities in available. pregnancy. provider, with 46% visiting experiences for women some women recount
the United States, 49% reported difficulties multiple providers before with disability. pregnancy experiences
including their using their arms. selecting their ongoing from 10 years ago.
perceptions of 18% reported having clinician. Low ethnic diversity.
interactions with dwarfism. - 40.3% reported their care
maternity providers. 76% used some form of provider knew little or
assistive mobility device. nothing about the impact
82% had some form of their physical disability
university/college level would have on their
education. pregnancy.
- Women were more likely to
report unmet prenatal care
needs if their provider
lacked disability knowledge
or they felt they were not
given adequate information

Midwifery 107 (2022) 103273

throughout pregnancy.

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 A. Blair, J. Cao, A. Wilson et al.
Table 2 (continued)

First Author (year), Study aims Study design and Participants Key Findings Study strengths Study limitations Quality appraisal score
location methodology (percentage)

Mitton (2007), United To explore the health Phenomenological 7 women who had been The only theme relevant to this Limiting to women with Small sample size with 8/10 (80%)
Kingdom and life experiences of qualitative approach. pregnant and given birth scoping review: rheumatoid arthritis low ethnic diversity.
mothers with Individual, with rheumatoid produced nuanced Interviewer was a nurse
rheumatoid arthritis semi-structured arthritis. All women - Pre-and post- natal education results specific to with a pre-existing
with the aim of interviews. recruited through a women with this client-practitioner
Health providers and educators
increasing knowledge single outpatient condition. relationship with
lack knowledge of how
about this group to rheumatology participants potentially
rheumatoid arthritis affects
inform healthcare department in affecting what they were
pregnancy and birth, including
professionals providing metropolitan England. willing to share.
its possible complications.
support to these
women during and - Length of time living
after pregnancy. with rheumatoid
arthritis ranged from
3 to 11 years.
- Age of children 1–7
years.
- Five married, two
singles.
- One woman in full
time employment,
two in part time
15

employment, and
four not employed.

Prittettensky (2003), To explore the Qualitative study design 35 women with
Canada pregnancy and early involving both focus disability participated in
parenting experiences groups and individual focus groups. Two of the
of mothers with interviews. four focus groups were
disabilities and the with mothers.
availability of both 13 women participated
formal and informal in individual interviews,
supports. of which eight were
mothers. Some of these
women had participated
in a focus group earlier.
A variety of
mobility/limb
impairments were
represented. Most were
wheelchair users.
Two-thirds of women
held a post-secondary
- Many women felt pressured Main author has a lived Reporting of the 7/10 (70%)
by health providers to experience of physical sampling and
terminate their pregnancy, disability, providing a recruitment strategies,
even if it was planned. unique perspective to and participant
- Disability and pregnancy the analysis. demographics unclear or
health issues seen missing.
separately with disability
and maternity specialists
only treating that which
they are familiar.
- On the postnatal ward some
women felt overly watched
and interrogated, having to
prove their competency as a
parent.
- Women appreciate care
providers who involve them
in care decisions and

Midwifery 107 (2022) 103273

school degree. provide additional supports
when required.

(continued on next page)

 A. Blair, J. Cao, A. Wilson et al.
Table 2 (continued)

First Author (year), Study aims Study design and Participants Key Findings Study strengths Study limitations Quality appraisal score
location methodology (percentage)

Redshaw (2013), United To describe women Secondary analysis of 24,155 new mothers in Compared to women without a Large sample size, Moderately low survey 7/8 (88%)
Kingdom with disabilities use population based postal total, 1482 of whom had disability, women with a greater generalisability response rate (52%).
and experiences of survey data. some type of disability physical disability: of results. No information
pregnancy, childbirth, Descriptive statistics (6.14%), of which 730 Participant’s gave birth regarding socioeconomic
and postnatal care, and reported alongside had a physical disability - Used antenatal services, within the past three status or educational
compare this to Chi-squared and logistic (3.02%).Women with a ultrasound scans, and months (short recall attainment (possible
experiences of women regression analysis. physical disability postnatal services more time). confounding variables).
without disability. Repeated survey results included women with a frequently. First national study in Some key factors
seen in Malouf, 2017. long-standing health - Were less likely to attend the United Kingdom to previously shown to
problem involving a antenatal classes. compare the use of affect maternity
physical condition (e.g. - Had less choice about labour maternity services by experiences (e.g.
cerebral palsy), or a long and birth including location disability type. building accessibility)
standing illness (e.g. and birth positionings. not measured.
epilepsy).Women with a - Less likely to have baby put
physical disability: to breast at least once.

- Were more likely to

be 35 years or older
compared to women
without disability
(44% compared to
23%).
- 83% had a long-term
16

partner.

Schildberger (2017), To investigate the Qualitative study 10 women, of which 4 Three themes identified: First known study on Small sample size 8/10 (80%)
Austria experiences and involving in-depth had a physical disability this topic in the Austrian particularly when
personal meanings of semi-structured and 6 had a sensory - The social network context. looking at women with
women with physical interviews. disability (results from physical disabilities
The desire for normality and to
and sensory disabilities women with sensory separately.
be accepted as a woman and
in regard to pregnancy, disability excluded from Authors suggest results
mother by society.
childbirth, and the this review). may not be generalisable
puerperium. Physical disability types - Self-efficacy and to other countries
included cerebral palsy self-awareness healthcare systems.
and paraplegia after an
accident. Women generally confident in
All women with a their own abilities, however
physical disability had lacking support and negative
only one child at time of attitudes from health providers
interview all of which can undermine confidence.
were aged five years or
- Communication, transparency,
less.
and information
Nine of the ten women
lived in urban areas, and Communication between women

Midwifery 107 (2022) 103273

one in a rural area. and providers filled with
uncertainty. Information
regarding pregnancy, birth and
the puerperium for women with
disability inadequate.
(continued on next page)
 A. Blair, J. Cao, A. Wilson et al.
Table 2 (continued)

First Author (year), Study aims Study design and Participants Key Findings Study strengths Study limitations Quality appraisal score
location methodology (percentage)

Tarasoff (2017), Ontario To understand the Constructivist, grounded 12 women with physical Four themes relevant to women Study considers the Low diversity of 9/10 (90%)
Canada perinatal care theory approach. disabilities (results with physical disabilities: accessibility of the participants in regard to
experiences and Qualitative methodology relating to an additional neonatal intensive care ethnicity, educational
outcomes of women involving in-depth woman with congenital - Negative attitudes unit, not considered in attainment, and
with physical interviews, blindness were excluded other studies. sexuality.
Women’s ability to parent
disabilities in Ontario, predominantly from this Short recall as women
questioned. Unwillingness of
Canada, with the aim conducted face to face review).Disability types had given birth within
care providers to assist when
to identify barriers to with some over included: arthritis, past 3 years.
required.
care. telephone. cerebral palsy, congenital
Short follow up amputation, congenital - Lack of knowledge and
interviews conducted bone growth disorder, experience
after initial analysis to degenerative disc
confirm data and disease, fibromyalgia, Care providers and publicly
establish credibility. muscular dystrophy, available knowledge lacking,
leading to feelings of frustration
17

osteoporosis, scoliosis
and spinal cord injury. and anxiety.

- 92% use an assistive - Lack of communication and

device. collaboration amongst
- 92% in a long-term providers
relationship.
Particularly between maternity
- All women had
and disability specialists.
started or complete
further education - Misunderstandings of
university/graduate disability and
degrees. disability-related needs
- Most lived in large
urban centres. Providers fixating on one aspect
of disability while ignoring
others. The needs of women
with ‘invisible’ disabilities often
overlooked.
(continued on next page)

Midwifery 107 (2022) 103273

 Table 2 (continued)

First Author (year), Study aims Study design and Participants Key Findings Study strengths Study limitations Quality appraisal score

A. Blair, J. Cao, A. Wilson et al.

location methodology (percentage)

Tebbet (2012), United To examine the lived Qualitative design using 8 women who had given Person centred care and First study to explore Low sample size. 7/10 (70%)
Kingdom experience of an interpretative birth to 1–2 children remaining in control were seen the experiences of Sampled from a single
pregnancy and phenomenological with a spinal cord injury. as critical for women with childbirth for women hospital with specialised
childbirth for women approach. Spinal cord injuries were SCI.Five main themes: with SCI, leading to SCI facilities. Sample
with spinal cord injury. Semi-structured a mix of complete and specific findings that may not reflect the
interviews analysed incomplete injuries, - Preparing for childbirth relate to this population. experiences of women
using the interpretative ranging from levels attending other
Women researching
phenomenological C5-L1. non-specialised
pregnancy/childbirth
analysis technique. All women attended a hospitals.
information relevant to them.
single hospital that hosts
both a specialist spinal - Childbirth as a pleasurable
centre and a maternity event
ward.
Most women had positive birth
experiences.

- Childbirth as a unique
experience for women with
SCI

Unique care plans including

routine transfer to spinal ward
before due date and after birth.

- The importance of support

Care providers with supportive

attitudes improved women’s
experiences.
18

- Childbirth as a team effort

with varied degrees of
controllability

Women valued being listened to

by providers and being involved
in care decisions.
Walsh- To describe the Descriptive, 17 women with a Two main themes identified: Strong methodological Demographics of 8/10 (80%)
Gallagher (2012), personal meanings phenomenological disability, 9 of which underpinning using participants not
Ireland women with a approach. had a physical disability. - Affirmation of motherhood phenomenology reported.
disability ascribe to Qualitative methodology Women were recruited interpretative analysis.
Being able to experience
their pregnancy, involving in-depth, from three major
pregnancy despite their
childbirth, and semi-structured maternity hospitals
disability produced feelings of
motherhood interviews. Each spanning Northern
normality.
experiences as participant interviewed Ireland and the Republic
perceived by them with twice: once during the of Ireland. - Perceived reactions of others
particular focus on second trimester of Physical disability types
feelings of control, pregnancy, the second included: epilepsy, Health providers view women as
making choices, access up to three months post multiple sclerosis, spina high-risk and potential
to and continuity of birth. bifida with liabilities. Being labelled high
care. Interpretative hydrocephalus, brain risk increased women’s

Midwifery 107 (2022) 103273

phenomenological tumour, cerebral palsy, anxiety.Other findings:
analysis. and motor neurone
- Maternity services designed
disease.
for able bodied women with
59% were married or in
little to no adaptations in
a long-term relationship,
place.
36% were single (one
- Women not feeling in
woman widowed).
control of their care choices
88% worked prior to
and birthing experiences.
their pregnancy.
- Care providers lacked
disability knowledge.
A. Blair, J. Cao, A. Wilson et al. Midwifery 107 (2022) 103273

Fig. 2. Thematic synthesis overview.

“I say yes [I was treated differently] in a positive way as everything valuable asset that any person could have at any point in their
was done to make my pregnancy and delivery go as smoothly as life. That’s the way for us with disabilities.” (Iezzoni et al., 2017)
possible.” (Hall et al., 2018)
Developing maternity provider’s disability knowledge and skills

Despite these varied attitudes, women agreed they wanted to

Several studies focussed on the need to increase disability
be treated with respect and did not want to be made to feel like a
knowledge to better support women and address knowledge
“spectacle” while receiving care (Tarasoff, 2017).
deficits. Many women stated their provider knew little or nothing
Staying independent and in control was emphasised by
at the start of their antenatal care about the impact their disability
women in these studies. During pregnancy, many women expe-
could have on pregnancy (Mitra et al., 2017; Smeltzer et al., 2017).
rienced a decline in mobility and exacerbations of their physical
Women appreciated when providers made a concerted effort to
disability which decreased their independence and increased their
increase their knowledge through research, however this was not
reliance on partners, family members, and maternity providers
common practice (Mitra et al., 2017). Women expressed particular
(Bertschy et al., 2015; Iezzoni et al., 2015b). Women stressed the
frustration when providers were unwilling to learn directly from
importance of being strong self-advocates to remain in control of
them, undermining their wealth of knowledge and lived experi-
care decisions. Finding a maternity provider who was respectful of
ence. This woman said:
their knowledge and right to make decisions was essential as ar-
ticulated here: “Definitely do your research, ask those questions, ask questions of
the patient. If you really want to know about how things affect me
“find a good doctor that’s willing to work with you. If he’s not, you
or certain things, ask me as well.” (Smeltzer et al., 2016)
find another.” (Mitra et al., 2016)
Women reported that their disability related concerns were not
addressed with the same sense of urgency as their pregnancy re-
Women wanted to prepare for pregnancy, childbirth and par-
lated concerns (Hall et al., 2018). Providers particularly lacked the
enthood with disability-specific pregnancy knowledge to assist in
insight to provide the supports necessary for women with invisible
making informed maternity care choices. Women described gain-
disabilities.
ing confidence and being better able to plan support services with
their increased knowledge. Many women visited their birth facil- “At times it is right to be treated different. My disability is unseen
ity and met their care team in advance as a key birth prepara- and even when I signpost educate and explain, my needs are ig-
tion strategy (Iezzoni et al., 2017). Women relied on pregnancy nored” (Hall et al., 2018)
books, research publications and disability organisation websites as
Women highlighted the need to address providers’ attitudes,
information sources. However, they recognised these sources of-
assumptions and prejudices in relation to disability as these in-
ten lacked information relevant to their circumstances. When in-
fluenced care experiences. When providers supported women’s
formation was available, particularly when it was from an online
pregnancies and trusted their ability to parent, women had more
source, women questioned its validity (Bertschy et al., 2015). In-
favourable experiences. Unfortunately, many women encountered
stead, women turned to peers (other mothers with disabilities) to
insensitive and discriminatory providers who were unaware of dis-
elicit trustworthy sources of knowledge, practical tips and commu-
ability rights (Tarasoff, 2017). Some women described instances of
nity support. This woman explained the need to:
providers questioning their reasons for wanting to have a baby and
“…have people that have gone through it or are going through it pushed unwelcomed suggestions of termination, adoption or ster-
and have a network. I think having a network of peers is most ilisation. This woman describes:

19
A. Blair, J. Cao, A. Wilson et al.
“Women with disabilities have the ability and the right to have
a child, just like anyone else, and care providers need to not let
their own personal views affect what advice they give to a pa-
tient.” (Smeltzer et al., 2016)
Assumptions surrounding women’s abilities meant less active
support and encouragement of breastfeeding, leading to lower
rates of breastfeeding initiation and continuation (Malouf et al.,
2017; Redshaw et al., 2013). Many felt scrutinised on the postna-
tal ward if seen to be struggling with certain baby caring skills and
described instances where providers threatened the involvement of
social services. This woman explains:
“I always felt like there was somebody watching me … somebody
kind of hovering over me, which was a very uneasy feeling…”
(Begley et al., 2010)
Maternity care provider communication and shared decision
making is critical. Women with physical disabilities reported feel-
ing less likely than those without disabilities to feel listened to,
spoken to in a way they could understand, and to be involved in
decisions about their care (Malouf et al., 2017). They often felt dis-
connected from the decision-making process with care options not
explained, and preferences going unheard. This led to high levels of
dissatisfaction as maternity and birthing plans were not followed.
Partners or family members were often looked to as the primary
communicator, reducing women’s feelings of independence and
control. This woman explained the experience:
“I find being in a wheelchair means I am regularly not listened to.
My husband or mum are asked questions instead of me. When the
professional does not like what I have to say they looked to my
mum or husband to put me in my place (at least that is how it
felt)” (Hall et al., 2018)
Women appreciated providers who respected their right to
make informed care choices independently or as a team, and when
providers articulated why certain options were not available to
them. For example:
“[My obstetrician] knew…that I was not talking out of fear…that
I had some knowledge and education to support my decisions. She
really believed I knew my body the best and was willing to help
me…” (Smeltzer et al., 2017)
Inter-provider and inter-disciplinary collaboration were im-
portant as this meant maternity providers, disability specialists,
and anaesthesiologists communicated effectively. Inter-disciplinary
collaboration appeared rare from the women’s perspective, as ex-
plained here:
“There’s a lot of siloing that goes on in the medical community,
especially if you have a complex disability like mine when you
have issues dealing with chronic pain and a physical disability
that the two do not communicate. You get excellent care in those
two separate areas but they do not communicate with each other.”
(Tarasoff, 2017)
Poor inter-provider communication meant women became the
messengers of complex medical information between specialists.
Lacking effective means of communication and understanding of
other providers’ roles also resulted in fewer referrals to appro-
priate services including occupational therapists, physiotherapists,
and adaptive equipment services. When collaborative efforts were
demonstrated, maternity care processes became streamlined and
women were more likely to receive quality care and enjoy positive
care experiences (Long-Bellil et al., 2017).
20
Midwifery 107 (2022) 103273
Promoting enabling environments
Reducing physical access barriers was critical. Physically in-
accessible maternity facilities and equipment affected women’s
choice of facility and negatively impacted their experience within
facilities. A lack of disabled parking spots, ramps, automatic doors,
low reception desks, and wide corridors made navigating facili-
ties difficult for women. Women reported that many facilities were
not equipped with adjustable examination tables, forcing them
to struggle onto tables, be examined in their mobility device, or
have reduced examinations (Iezzoni et al., 2015b). Manual trans-
fers by staff or family removed women’s independence and left
them feeling “undignified” (Iezzoni et al., 2015b). Women were
nervous about being lifted by providers who were unfamiliar with
their disability, with multiple reports of women being dropped
(Iezzoni et al., 2015b).
Inaccessible weighing scales meant many women were not
weighed regularly or at all during pregnancy. This caused anxiety
in women who were unsure that their own weight gain was on
track or did not trust weight estimations for medication dosing.
One woman said:
“I was not professionally weighed at any time during the preg-
nancy. Not once did they have anyone to weigh me. That was an-
other reason why I was like, ‘You are not putting any drugs into
my epidural line.’ They were just going to approximate my weight.”
(Iezzoni et al., 2015b)
Postnatal wards with inaccessible bathrooms and high baby
cots meant women were unable to start caring for themselves and
their baby without assistance. Some women brought equipment
from home to increase their independence.
The need to improve access to models of care and services
was consistently reported. Many women reported a preference for
midwifery-led care and birthing centres over more obstetric-led
hospitals. These preferences were often denied as midwifery-led
services and birthing centres turned women away stating they
were unable to accommodate disability specific needs, often with-
out consulting women on their additional or alternate needs. As
a result, care choices for women with physical disabilities were
greatly restricted. Women travelled further to large urban hospitals
only to be provided with less individualised care and no guarantee
of superior provider disability knowledge. This woman explained:
“I was not allowed to go to the low risk [birthing] centre despite
my disability not affecting my capacity to give birth.” (Hall et al.,
2018)
Antenatal education classes did not seem to meet the needs
of women with physical disabilities. Women did not attend or
stopped attending due to fears of not fitting in, being unable to
move on and off the ground, and the information not being rele-
vant. Particularly frustrating for women was the exclusion of topics
relevant to their situation including caesarean section and bottle
feeding (Begley et al., 2010).
Other relevant services, including adaptive equipment suppliers
and allied health appointments, were difficult to access. When they
were available and referred to, women found them invaluable.
The importance of individualised care practices and inclu-
sive organisational policies was highlighted. Facility policies and
guidelines and their implementation by providers were often found
to be inflexible and unaccommodating. Short and ill-timed antena-
tal appointments impacted women’s ability to attend and have all
their questions addressed. When continuity of care was not pro-
vided, women found unnecessary time was taken repeating their
complex medical histories to each provider. This woman said:
A. Blair, J. Cao, A. Wilson et al.
“I had to keep going over the same things to different midwives
last time. This time I have just one midwife and my consultant.
They know me really well and it’s so much better.” (Hall et al.,
2018)
During labour and postnatally many women’s mobility level
was restricted by hospital policies. Several women were told to re-
main immobile during labour, despite neighbouring women with-
out disabilities being allowed to use active birthing techniques
(Smeltzer et al., 2016).
Women appreciated providers who considered the women’s
feelings and needs in guiding their actions, rather than relying ex-
clusively on policies. When facilities and providers displayed flexi-
bility, women had more positive experiences as articulated here:
“Listen to what women tell you about what they want and ask
them if they can do things, do not request them to. Do not tell
them what the policies are without explaining how you can adapt
them or why they are recommended in that way.” (Hall et al.,
2018)
Discussion
This scoping review brought together findings from 22 studies
(27 articles) spanning eight OECD countries to establish an under-
standing of women with physical disabilities access to, and expe-
riences of, maternity care. Despite ongoing efforts by the United
Nations, WHO, and countless local disability organisations to advo-
cate for disability and women’s rights, this review revealed women
with physical disabilities face numerous barriers to accessing ma-
ternity care that is accommodating of their needs and preferences,
and many have mixed or negative care experiences. The majority
of women in these studies wanted their pregnancy and maternity
experiences to be similar, if not the same, as for women without
disabilities. Unfortunately, maternity providers’ inadequate disabil-
ity knowledge, discriminatory attitudes, and poor communication
skills prevented this from occurring, leaving many women to feel
a loss of control and independence in their pregnancy journeys.
Environmental factors including physical inaccessibility of fa-
cilities, inflexible organisational policies, and restricted care
choices were found to further impact women’s experiences of
maternity care. These findings align closely with those from
Lawler et al. (2013), suggesting little progress has been made to
implement quality improvement strategies since their review was
published in 2013.
There is a need to improve the quality and quantity of provider
disability training to address the current insufficiencies in mater-
nity provider disability knowledge and awareness. Training courses
for providers should address clinical knowledge gaps, disability
rights, attitudes, and communication skills. Co-designing online
and in-person courses with women with physical disabilities will
ensure the provider deficits that most impact women’s experi-
ences are addressed (World Health Organization, 2020). A review
of the research from the perspective of maternity providers about
their experiences and difficulties in providing care for women with
physical disabilities could further assist in targeting training top-
ics and teaching methods. Once courses are established, profes-
sional midwifery and obstetric bodies should develop and imple-
ment guidelines for maternity staff to engage in continuing dis-
ability education (World Health Organization, 2015).
Another key method to increase provider knowledge should be
through fostering inter-provider and inter-disciplinary collabora-
tion. Bringing maternity and disability providers together through
hospital in-services, webinars and conferences would greatly as-
sist in knowledge transfer, integrated care delivery, and increase
the number of referrals to appropriate services (World Health
Organization, 2015). Finally, for the ongoing advancement of
21
Midwifery 107 (2022) 103273
provider disability knowledge, a greater commitment to research
focussed on the intersection of disability and pregnancy is re-
quired (World Health Organization, 2011). Building an evidence
base will: assist in the production of clinical guidelines, allow an-
tenatal educators and providers to incorporate disability relevant
knowledge into classes and appointments, and increase the pro-
duction of knowledge resources relevant to women with disability.
Not all knowledge women seek during pregnancy can be gained
through books, research or maternity providers. The practical
tips and support received from peers was found to be a key
source of comfort for women and should be further encouraged
(Begley et al., 2010; Bertschy et al., 2015; Mitra et al., 2016;
Mitton et al., 2007; Tebbet and Kennedy, 2012). Online and in-
person peer support groups and mentoring services for women
with disabilities should be promoted within maternity facilities.
Disability organisations are in a prime position to create and pro-
mote new support groups, listing locally available groups on their
websites.
Environmental factors, including physical access barriers and
unaccommodating organisational policies were found to be com-
promising maternity care experiences for women with physical
disabilities. Co-designing new facilities and altering existing facil-
ities using universal design principles (whereby buildings are de-
signed to be accessible to people of all abilities) is well overdue.
Regulations ensuring equal access to health facilities are required
where they do not already exist, and standardised accessibility
measures should be used in the regular monitoring of such laws
(World Health Organization, 2020).
In terms of organisational policies, it is crucial that women with
disabilities have the same right as women without disabilities to
choose a model of care accommodating of their preferences and
needs. This choice should include midwife-led continuity models.
Midwife-led continuity models have multiple benefits for women
(without major pregnancy complications) including reduced med-
ical intervention at birth, increased feelings of control, increased
continuity of care, and overall increased maternity care satisfac-
tion (Sandall et al., 2016). As perceived loss of control, poor con-
tinuity of care, and overall poor care satisfaction were identified
as key problems for women with physical disability, improving ac-
cess to midwife-led continuity models has the potential to rem-
edy these issues. To improve access to such care models, facilities
should never assume a woman’s pregnancy risk level based on the
presence of a disability alone. Low-risk birthing centres should im-
plement policies and procedures that would allow them to accom-
modate common and often minor adaptations women with dis-
abilities require to give birth safely (Dean et al., 2018). To further
enhance women’s access to, and positive experiences of maternity
care, services should allow flexible appointment scheduling and
home visits, allow support people to stay overnight on postnatal
wards, increase continuity of care practices and early involvement
of anaesthesiologists. When these policies were in place women
felt better supported and empowered to make informed care deci-
sions as part of a trusted team (Begley et al., 2010; Hall et al., 2018;
Iezzoni et al., 2017; Long-Bellil et al., 2017; McKay-Moffat and Cun-
ningham, 2006).
The findings of this review and recommendations described
above provide a solid foundation for creating or updating mater-
nity facility disability/accessibility action plans. These plans are in-
creasingly being used, and are a requirement in some jurisdic-
tions, to illustrate health facilities commitment to improving dis-
ability inclusive practices (Victoria State Government, 2019; World
Health Organization, 2015). The breadth and depth of action plans
vary widely between facilities, suggesting further guidance is re-
quired for their development and implementation. Disability ad-
visors at the facility level, as recommended in a number of arti-
cles, would help ensure the continued development, use and eval-
A. Blair, J. Cao, A. Wilson et al.
uation of action plans (Begley et al., 2010; Guerin et al., 2017). Dis-
ability/accessibility action plans should be created and evaluated
in collaboration with women with physical disabilities to ensure
plan strategies are increasingly woman-centred and disability in-
clusive (Brady et al., 2019; Kalpakjian et al., 2020; Larson et al.,
2020; Smith-Merry, 2017). Patient reported experience measures
specifically designed to consider the distinct needs of women with
physical disabilities should be used in the evaluation of new and
updated maternity care initiatives to ensure benefits can be com-
pared fairly between programs while also ensuring the findings
tare meaningful to women with disabilities (Depla et al., 2020;
Dickinson et al., 2019; Kalpakjian et al., 2020).
This review is not without its limitations. The search strategy
was restricted to articles published in English, likely excluding oth-
erwise relevant articles. Our research question lent itself to quali-
tative research which broadly speaking, is not considered gener-
alisable. However, the homogeneity of results arising from mul-
tiple regions and healthcare systems increases confidence in the
generalisability of findings (Thomas and Harden, 2008). Preferably
there would have been greater diversity in the study samples ed-
ucational attainment, employment status, sexual orientation and
ethnic diversity, as these factors will also affect women’s interac-
tions with healthcare facilities as well as their own understand-
ing and relationship with disability (Horner-Johnson et al., 2014;
Meade et al., 2015). Future research should explore the affect the
intersection of disability with these factors has on maternity care
access and experiences.
Strengths of the review include its commitment to amplifying
the voices of women with physical disabilities by including arti-
cles only from their perspective. This is important for disability
inclusion and encouraging woman centred maternity care (Smith-
Merry, 2017). Including a quality appraisal ensured the contribut-
ing articles are of a moderate to high methodological standard giv-
ing us greater confidence in the findings.
Conclusion
Women with physical disabilities are made to feel different due
to negative societal attitudes and unaccommodating environmen-
tal structures. Women with physical disabilities face several barri-
ers in accessing maternity care and describe suboptimal care expe-
riences. Women with physical disabilities have the right to access
safe, high-quality, respectful maternity care. Our findings are of im-
mediate relevance to maternity stakeholders involved in planning
and implementation of equitable maternity services. Maternity fa-
cilities, midwifery and obstetric associations, and relevant govern-
ment bodies need to support provider training and inclusive organ-
isational policies. Initiatives should be planned and implemented
using a co-design approach, guided by both the positive and neg-
ative experiences of women, and new initiatives monitored and
evaluated. Meaningful progress towards equitable maternity care
will only arise for women with disabilities when their voices are
centred and respected.
Ethical approval
Not applicable.
Funding sources
This research did not receive any specific grant from funding
agencies in the public, commercial, or not-for-profit sectors.
Declaration of Competing Interest
None declared.
22
Midwifery 107 (2022) 103273
Acknowledgement
We thank Doctor Christine Thompson for valuable assistance in
reviewing the manuscript and providing guidance from a disability
perspective.
Supplementary materials
Supplementary material associated with this article can be
found, in the online version, at doi:10.1016/j.midw.2022.103273.
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http://www.biomedcentral.com/1471-2393/13/174

RESEARCH ARTICLE Open Access

Women with disability: the experience of maternity

care during pregnancy, labour and birth and the
postnatal period
Maggie Redshaw*, Reem Malouf, Haiyan Gao and Ron Gray

Abstract
Background: It has been estimated that 9.4% of women giving birth in the United Kingdom have one or more
limiting longstanding illness which may cause disability, affecting pregnancy, birth and early parenting. No large
scale studies on a nationally representative population have been carried out on the maternity experiences of
disabled women to our knowledge.
Method: Secondary analysis of data from a survey of women in 2010 by English National Health Service Trusts on
behalf of the Care Quality Commission was undertaken. 144 trusts in England took part in the postal survey.
Women self-identified with disability and were excluded if less than 16 years of age or if their baby had died. The
12 page structured questionnaire with sections on antenatal, labour and birth and postnatal care covered access,
information, communication and choice. Descriptive and adjusted analyses compared disabled and non-disabled
groups. Comparisons were made separately for five disability subgroups: physical disability, sensory impairment,
mental health conditions, learning disability and women with more than one type of disability.
Results: Disabled women comprised 6.14% (1,482) of the total sample (24,155) and appeared to use maternity
services more than non-disabled women. Most were positive about their care and reported sufficient access and
involvement, but were less likely to breastfeed. The experience of women with different types of disability varied:
physically disabled women used antenatal and postnatal services more, but had less choice about labour and birth;
the experience of those with a sensory impairment differed little from the non-disabled women, but they were
more likely to have met staff before labour; women with mental health disabilities also used services more, but
were more critical of communication and support; women with a learning disability and those with multiple
disabilities were least likely to report a positive experience of maternity care.
Conclusion: This national study describes disabled women’s experiences of pregnancy, child birth and postnatal
care in comparison with non-disabled women. While in many areas there were no differences, there was evidence
of specific groups appropriately receiving more care. Areas for improvement included infant feeding and better
communication in the context of individualised care.
Keywords: Disability, Maternity care, Pregnancy, Birth, Maternity survey

Background prevalence of 10% estimated among women of childbear-

Prevalence of disability in women worldwide
and in the UK
Based on the 2010 global population report more than one
billion people have been estimated to have some form of
disability, a total of 15% of the world’s population, with a
* Correspondence: maggie.redshaw@npeu.ox.ac.uk
Policy Research Unit for maternal Health and Care, National Perinatal
Epidemiology Unit, University of Oxford, Old Road, Oxford OX3 7LF, UK
ing age [1]. The proportion of individuals with disabilities
is rising, possibly due to a changing age structure and to an
increase in chronic health conditions [1]. Moreover, a
higher prevalence of disability is reported among women,
older people and low income families [2]. Many women of
childbearing age have encountered significant difficulties in
daily living because of a disabling condition [3]; and while
disabled women have the same desire and legitimate right

© 2013 Redshaw et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative
Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and
reproduction in any medium, provided the original work is properly cited.
Redshaw et al. BMC Pregnancy and Childbirth 2013, 13:174
http://www.biomedcentral.com/1471-2393/13/174
to become mothers as other women [4], their parenting
ability is often brought into question [5]. More disabled
women are having children [6]. A large scale UK popula-
tion based study of women with a limiting longstanding
illness, who had recently given birth found a prevalence
of 9.4% of limiting longlasting illness [7].
Defining disability – the WHO definition of disability
There is no universal agreement on a definition of dis-
ability. However, the International Classification of Func-
tioning Disability and Health (ICF) defines disability as
“an umbrella term, covering impairments, activity limita-
tions, and participation restrictions”; adding that “dis-
ability is a contextual variable, dynamic over time and in
relation to circumstances; its prevalence corresponds
to social and economic status”. Disability is thus seen
as “a complex phenomenon, reflecting an interaction
between features of a person’s body and features of
the society in which he or she lives” [1].
Increasing evidence suggests that disabled people in
general have a poorer level of health, lower educational
achievements and a higher rate of unemployment than
their non-disabled counterparts [1]. Disability can be
physical, mental, sensory, or involve a learning disability,
it may be recent or long-term, progressive or stable and
needs to be considered in terms of the physical implica-
tions and in relation to a woman’s coping abilities and
those of her family [8].
Many disabled women have successfully become mothers
and given birth to healthy babies [4]. However, barriers
in access to health care providers and facilities have
been reported for many women with physical disabil-
ities [9]. High rates of abortion, miscarriage, caesarean
section, and low usage of contraception were found in
a survey involving 410 physically disabled women car-
ried out in South Korea [10]. Increased risk of adverse
pregnancy outcomes has been noted in women with some
chronic illness, such as rheumatoid arthritis and schizo-
phrenia [11]. For example, a higher proportion of low birth
weight (LBW) babies (11.8% vs. 6.8%) has been reported
for offspring of mothers with schizophrenia compared with
other mothers [12].
To ensure a safe pregnancy and a healthy baby it is ar-
gued that healthcare professionals should focus more on
women’s abilities than their disabilities [4] and that care
and communication should be about empowering women.
Evidence from qualitative research suggests that maternity
care needs have not been met for many pregnant disabled
women [5,13]. Many women with disabilities say they feel
invisible in the healthcare system, stressing that their prob-
lems are not simply medical, but also social and political,
and that access means more than mere physical accessibi-
lity [14]. Because many women with disabilities face a great
deal of unpredictability in their daily lives, they want care
Page 2 of 14
that is well planned and which helps to eliminate the unex-
pected [15].
The recommendation of the current UK NICE Ante-
natal Care Guidelines is that all pregnant women should
access health care services early. In general, people with
disability may face considerable challenges in accessing
health care services [16]. What little research exists on
addressing maternity issues among disabled mothers
generally focuses on their disability rather than their repro-
ductive capability [17]. The aim, in this secondary analysis
of population based survey data, was to obtain a picture
of disabled women’s recent use and experience of mater-
nity care and to better understand the issues arising with
different types of disability.
Methods
Objectives
The specific objectives of this study were to:
 Describe the maternity care provided during
pregnancy, birth and the postnatal period for
women with a disability
 Explore disabled and non-disabled women’s
perceptions of care received during pregnancy, birth
and the postnatal period
 To compare the care and perceptions of the care
received by women with different types of disability
with those of women with no disclosed disability
Study design
In England in 2010 data were collected for the Care
Quality Commission (CQC) (which has a role in regula-
tion, inspection and review of the operation of national
standards in healthcare), by surveys in all 144 acute
National Health Service Trusts (geographically based
healthcare organisations) providing maternity services. A
structured 12 page questionnaire, based on that used in
previous national user surveys [18,19], with sections on
pregnancy (31 questions), labour and birth (17 questions)
and the postnatal period (21 questions). The postal sur-
vey was sent out to over 50,000 women aged 16 years
(excluding women whose babies had died) three months
after they had given birth. Completion and return of
the questionnaire was taken as consent. The question-
naire covered access, information, communication and
choice. Data on antenatal care, delivery mode, ratings of
care and neonatal outcomes were collected as were socio-
demographic characteristics including age, parity, ethnicity
and partner status. Respondents’ ages were categorized
as less than 20 years, 20–24, 25–29, 30–34 and 35 years
or more. For ethnicity five categories were used: White,
Mixed, Asian or Asian British, Black or Black British,
Chinese or other ethnic group. The study, which complied
with the Helsinki Declaration, involved secondary data
Redshaw et al. BMC Pregnancy and Childbirth 2013, 13:174
http://www.biomedcentral.com/1471-2393/13/174
analysis. The original survey evaluating maternity services
in England was passed by the North West 5 Multi-Centre
Research Ethics Committee (07/MRE8/1).
Respondents were asked if they had any long-standing
conditions, with seven options including ‘No, I do not
have a longstanding condition’. Five disability types were
distinguished in the analyses: physical (long-standing phys-
ical condition and long-standing illness), sensory (deafness
or severe hearing impairment and blindness or partial
sightedness), mental, learning disability, and having a com-
bination of two or more of these.
Women were asked questions about their antenatal
care, labour and birth and postnatal care using three to five
point Likert type scales. Women responded to a question
on overall view of the three different phases of care rating
on a five point scale: responses with the categories ‘excel-
lent’, ‘very good’ and ‘good’ were combined and compared
with those using the ‘ fair’ and ‘poor’ categories.
In the first part of this study we compared the mater-
nity care received by women with disability and that re-
ceived by women without disability. In the second part
we examined the differences in maternity care received
by the disabled women based on the type of disability.
Statistical analyses
Descriptive statistics, including frequencies and propor-
tions were calculated and Chi-squared tests of signifi-
cance carried out. The Bonferroni method was applied
to allow for multiple significance tests with adjusted p-
values <0.01 regarded as statistically significant. Using
logistic regression, adjustment for confounding variables,
namely age, ethnicity, parity and partner status was
undertaken. Analyses were performed separately for the
disabled and non-disabled comparison and for the five
disability subgroups described above. Women who did
not complete the questions in the survey relating to dis-
ability were excluded. For all comparisons between a
specific disability group and non-disabled women the
statistical significance level was set at p = <0.01. The
study sample was weighted for non-response based on
the propensity modelling cell adjustment approach [20],
and clustered by acute Trust (healthcare organisation).
Robust standard errors were calculated using survey
commands in Stata to account for the clusters at NHS
trust level as well as non-response weights.
Statistical analyses were carried out using STATA 11
software (Stata Corp LP, College Station, TX).
Results
Socio-demographic characteristics
The response to the survey was 52%, representing
24,155 women in total. A comparison of the survey respon-
dent characteristics with national data on women giving
birth in England and Wales in 2010 [19] shows that they
Page 3 of 14
were more likely to be older (mean age 31 compared with
29.5 years), with 62% compared with 48% of mothers
aged 30 years or more. However, there was little or no diffe-
rence in parity or being partnered between the respon-
dents and the wider population of women giving birth in
England in the same year [21]. Slightly fewer women with
low birthweight babies responded to the survey than was
present in the 2010 population (5% compared with 7%)
and the proportions of women having multiple births did
not differ.
Disabled women comprised 6.1% (1,482) of the sample.
A comparison of the age distribution of the disabled and
non-disabled women shows that more disabled women
were likely to be 35 years or older (32% vs. 29%) (Table 1),
although the mean and median age for both groups was 31
years. There was no difference in parity, with nearly half of
the women in both groups being primiparous (48% and
50%) or in being of White ethnicity (87% and 86%). Small
differences were evident among the ethnicity groups due
to the number of disabled women who came from Asian
or Asian British ethnic groups (5% disabled vs. 7% non-
disabled women). Disabled women were less likely to have
a partner (79% vs. 87%) and a higher proportion delivered
preterm (12.2% vs. 7.1%) or had a low birth weight (LBW)
baby (8.3% vs. 4.8%).
Access and care during antenatal, labour and birth
and postnatal periods
Women with a disability were no different from non-
disabled women in the timing of first contact with a
health professional about their pregnancy care (94% and
95% by 12 weeks) or in their booking appointment (88%
and 90% by 12 weeks) (Table 2). Disabled women how-
ever, had significantly more contact with antenatal ser-
vices during the pregnancy: over a third had 10 or more
antenatal checks compared with a fifth of non-disabled
women (34% vs. 21%); half had four or more ultrasound
scans in comparison with a third of non-disabled women
(50% vs. 32%). Moreover, disabled women were signifi-
cantly less likely to choose their place of birth (64% vs.
80%), and for more disabled women (17% vs. 5%) this
was not possible for medical reasons. There was no dif-
ference in the proportion having a dating scan (95% in
both groups); in being tested for Down’s syndrome (96%
in both groups), or having a mid-trimester ultrasound
scan, with 99% of all women being scanned to detect
structural fetal anomalies. On the other hand, a significant
difference was apparent in the proportion of women who
attended antenatal classes (53% vs. 62%). This difference
was not associated with preterm birth, and as with non-
disabled women, being primiparous was associated with
antenatal education attendance.
With regard to labour and birth a significantly higher
proportion of disabled women (30% vs. 23%) had met
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Table 1 Characteristics of pregnant women with and Postnatally, disabled women were significantly more
without disability and their babies likely to stay in hospital for three or more days (40% vs.
Characteristics Women with Women without 29%), were significantly less likely to put their baby to
disability disability the breast at least once (77% vs. 84%) and to breastfeed
(n = 1482) (n = 22673) partially or exclusively during the first few days (70% vs.
Frequency (%) Frequency (%) 79%). Once home, disabled women were more likely to
Age group* have seen a midwife five or more times (27% vs. 24%).
<20 42 (2.8) 42 (2.8) Around 90% of women in both groups received postna-
20–24 194 (13.1) 2745 (12.1)
tal checks and contraceptive advice.
25–29 358 (24.2) 5336 (23.5)
Perceptions of maternity care
30–34 414 (28.00) 7594 (33.5) In assessing quality of care, women were asked about in-
35+ 473 (31.9) 6526 (28.8) formation, staff attitudes and communication during the
Parity different phases of their care (Table 3).
Primiparous 709 (48.0) 11215 (50.0) During pregnancy, significantly fewer pregnant dis-
Multiparous 764 (52.0) 11380 (50.0)
abled women reported always being spoken to in a way
they could always understand (79% vs. 84%) and always
Ethnic group*
being involved in decisions about their antenatal care
White 1283 (87.0) 19375 (86.0) (68% vs. 74%) (Table 3). Moreover, a significant propor-
Mixed 31 (2.0) 367 (2.0) tion of disabled women reported that when they had
Asian or Asian British 73 (5.0) 1670 (7.0) contacted a midwife they were not always given the help
Black or Black British 70 (5.0) 880 (4.0) they required (33% vs. 27%). However, almost all women
Chinese or Other Ethnic Group 22 (1.0) 328 (1.0)
in both groups (92% and 93%) rated their care as ‘good’
or better than ‘good’.
Partner**
During labour, disabled women were less likely to say
Yes 1164 (79) 19628 (87.0) that their companion or partner was definitely welcomed
No 318 (21.0) 3045 (13.0) (81% vs. 84%). They were also less likely to report defin-
Gestation at birth** itely having confidence and trust in the staff caring for
> = 37 weeks 1286 (87.8) 20943 (92.9) them at this time (70% vs. 74%) and always being spoken
< 37 weeks 179 (12.2) 1593 (7.1)
to in a way they could understand (81% vs. 84%). Fewer
women with disabilities reported always being involved
Birth weight **
in decisions about their care (65% vs. 71%) and those
> = 2500 g 1336 (91.7) 21347 (95.2) who required pain relief during labour and birth were
<2500 g 121 (8.3) 1088 (4.8) less likely to report receiving the pain relief they wanted
Plurality (56% vs. 61%). Slightly more felt that at some time they
Single baby 1452 ( 98.4) 22211 (98.4) had been left alone and worried during labour and birth
Twins 22 (1.5) 353 (1.6)
(19% vs. 16%) and overall were slightly less likely to rate
their care at this time as ‘good’ or better compared with
Triplets or more 1 (0.1) 11 (0.1)
non-disabled women (91% vs. 94%).
*p < 0.01, **p < 0.001.
Following birth, while still in hospital, mothers with
disability were less likely to report always being treated
the staff caring for them before labour. In relation to with kindness and understanding (60% vs. 64%). How-
pain relief there was no difference in disabled and non- ever, there were no differences in relation to percep-
disabled women’s use of pethidine (or similar medication) tions of length of stay or being given information or
(31% vs. 30%) or in use of epidural anaesthesia (or simi- explanations about their physical recovery or emotional
lar) (32% vs. 29%). Disabled women were significantly changes associated with birth. For care received at home,
more likely to have a caesarean section (31% vs. 24%) fewer disabled women reported that contacting a mid-
and this was likely to have been a planned procedure wife was always helpful (70% vs. 76%) and more would
(48% vs. 41%, p = <0.001) (data not shown). Significantly like to have seen a midwife more often (25% vs. 21%).
fewer women with disabilities were able to choose a Regarding infant feeding, in both groups active sup-
comfortable position most of the time during labour port from health professionals was always received by
compared with non-disabled women (49% vs. 57%) and less of half of women (44%) and consistent advice by
for more disabled women this was not possible at all just over a third (36%). When disabled women were
(15% vs. 12%) (data not shown). asked to rate their care after birth, slightly fewer disabled
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Table 2 Access and clinical care for disabled women during the antenatal, labour and birth and postnatal periods
Outcome Women with Women without Adjusted odds
disability n (%) disability n (%) ratio
(n = 1482) (n = 22673) (95% CI)
Pregnancy First saw a health professional by 12 completed weeks 1350 (94.3) 21115 (95.3) 1.12 (0.87- 1.44)
Booking appointment by 12 completed weeks 1153 (88.2) 18484 (89.5) 1.09 (0.91-1.31)
10 or more antenatal checks ** 455 (34.2) 4376 (21.1) 1.88 (1.66-2.12)
4 or more antenatal scans during pregnancy** 729 (50.2) 7223 (32.2) 2.04 (1.83-2.28)
Dating scan at 8–14 weeks of pregnancy 1378 (95.3) 21253 (95.2) 0.93 (0.71-1.21)
Testing for down’s syndrome 1032 (96.4) 16119 (96.8) 1.06 (0.74-1.53)
Mid-trimester (anomaly/20 weeks) scan 1439 (99.2) 22143 (99.0) 0.82 (0.45-1.50)
Attended NHS antenatal classes (of those wishing to)** 463 (53.0) 8193 (62.4) 0.71 (0.58-0.86)
Labour and birth Had met staff before labour** 430 (30.0) 5191 (23.3) 0.72 (0.63-0.81)
Had choice of place of birth ** 899 (64.4) 17329 (80.1) 1.44 (1.23-1.67)
Given epidural for pain relief in labour 379 (31.5) 5746 (28.9) 0.85 (0.74-0.97)
Given pethidine for pain relief in labour 371 (30.8) 5948 (30.0) 0.96 (0.84-1.10)
Able to choose a comfortable position most of the time ** 579 (48.6) 11308 (57.3) 0.72 (0.63-0.81)
Caesarean section birth** 445 (30.5) 5437 (24.2) 1.35 (1.19-1.52)
Postnatal care Length of postnatal stay > =3 days** 564 (39.6) 6230 (28.6) 1.63 (1.45-1.83)
Baby put to breast at least once** 1131 (77.3) 18987 (84.4) 1.41 (1.23-1.66)
Full or partial breast milk feeds in first few days ** 1018 (70.1) 17814 (79.4) 0.65 (0.57-0.74)
Total number of postnatal midwife contacts > = 5* 383 (27.0) 5260 (24.0) 1.22 (1.08-1.39)
Postnatal check 1279 (87.5) 19927 (89.0) 1.11 (0.93-1.31)
Given advice about contraception 1306 (90.3) 20569 (92.2) 0.78 (0.65-0.95)
*p < 0.01, **p < 0.001 Adjustment for age, parity, ethnicity and partner status Significant OR in bold.

women rated their postnatal care as good or better (86%
vs. 89%).
The significant differences reported for this disabled/
non-disabled comparison in care and perceptions of
care, were maintained in the adjusted analysis. Addition-
ally, in the adjusted analysis significantly more women
with disabilities reported having an epidural for pain re-
lief in labour (OR = 0.85, 95% CI 0.74-0.97).
Differences between different types of disabilities
In this analysis five disability types were distinguished: of
those 1482 women who self-identified as disabled almost
half had a physical disability (including chronic diseases
and long-standing conditions (49%); nearly a quarter had a
mental health condition (23%); and smaller proportions
had a sensory impairment (being deaf, blind or partially
sighted) (13%), a learning disability (8%) or more than one
of the previous types of disability (7%).
Women with physical disability
Women with a physical disability consisted of women with
a long-standing health problem involving a physical condi-
tion, for example cerebral palsy, or a longstanding illness
such as asthma or epilepsy (Table 4). The proportion of
women with physical disability aged 35 years or more was
twice that of non-disabled women (44% vs. 23%). Most
of the disabled women were white (84%) and they were
slightly less likely to have a partner (83% vs. 87%).
Mothers with physical disability were significantly more
likely to deliver their babies preterm (12.7% vs. 7.1%) and
to have a LBW baby (7.9% vs. 4.8%).
In terms of accessing services and clinical care during
pregnancy, like the non-disabled group, around 95%
women with a physical disability contacted a health care
professional about their pregnancy at or before week 12
(Table 5). Similarly, three quarters of both groups had
also made their booking appointment by this point in
time. However, women with a long term physical illness
or conditions were almost twice as likely to have 10 or
more antenatal checks (41% vs. 21%) and 4 or more
ultrasound scans during pregnancy (59% vs. 32%), al-
though they were no more likely to have the standard
antenatal screening. A lower and significant proportion
of women with disability attended antenatal classes (53%
vs. 62%), and this was unrelated to prematurity (p = 0.27)
(data not shown).
Perceived quality of care during pregnancy did not dif-
fer significantly for this group of women with a physical
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Table 3 Perceptions of care for disabled and non-disabled women

Outcome Women with Women without Adjusted odds
disability n (%) disability n (%) ratio
(n = 1482) (n = 22673) (95%CI)
Pregnancy Always spoken to in a way you could understand** 1156 (79.0) 18807 (83.8) 0.74 (0.65-0.85)
Always involved enough in decisions about your care** 993 (68.1) 16469 (73.9) 0.76 (0.67-0.85)
If contacted midwife, always given help when needed** 784 (67.4) 11775 (72.8) 0.77 (0.67-0.89)
Antenatal care overall rating ‘Good’ (excellent/very good/good) 1344 (91.8) 20830 (92.6) 0.93 (0.76-1.14)
Labour and birth Partner/companion definitely welcomed** 1157 (80.9) 18677 (84.4) 0.8 (0.70-0.92)
Definitely had confidence and trust in staff providing care** 1016 (69.7) 16617 (74.0) 1.2 (1.06-1.35)
Always spoken to in a way you could always understand** 1168 (80.0) 18914 (84.3) 1.34 (1.16-1.54)
Always involved enough in decisions about care** 936 (65.3) 15917 (70.6) 0.74 (0.66-0.84)
Definitely received the pain relief you wanted * 641 (56.3) 11356 (60.5) 0.84 (0.74-0.95)
Not left alone and worried during labour** 1165 (80.5) 18824 (84.4) 1.31 (1.14-1.51)
Labour and birth care overall rating ‘Good’ ** 1327 (91.1) 20971 (93.6) 1.35 (1.11-1.64)
Postnatal care Postnatal care in hospital always treated with kindness and 845 (59.5) 13869 (63.6) 1.18 (1.05-1.33)
understanding*
Postnatal care in hospital always given information/explanations needed 706 (49.6) 11555 (52.9) 1.14 (1.02-1.28)
Felt length of stay about right 962 (68.8) 15497 (72.6) 0.83 (0.73-0.930
At home if contacted midwife/health visitor, help always given** 730 (70.4) 11466 (75.6) 0.77 (0.67-0.89)
Would have liked more midwife visits** 356 (25.1) 4624 (20.9) 0.78 (0.68-0.89)
Definitely given enough information about recovery after birth 836 (58.5) 12680 (58.1) 0.97 (0.86-1.08)
Definitely given enough information about emotional changes 591 (42.6) 8876 (42.2) 1.03 (0.92-1.16)
Always had active support and encouragement with feeding 620 (43.8) 9529 (43.8) 1.01 (0.90-1.14)
Always had consistent advice about infant feeding 511 (36.5) 7777 (36.1) 1.01 (0.90-1.14)
Postnatal care overall rating ‘Good’* 1254 (85.8) 19858 (88.5) 1.23 (1.05-1.45)
*p < 0.01, **p < 0.001 Adjustment for age, parity, ethnicity and partner status Significant OR in bold.

condition or health problem: over 80% of respondents in
both groups felt they were talked in a way they could
understand; 70% or more felt they had been involved
enough in decisions about their care given and help
when needed. More than 90% rated their antenatal care
as ‘good’ or better (Table 5).
Similar results concerning antenatal care were still evi-
dent after adjustment. However, a further significant dif-
ference was found with more physically disabled women
reporting insufficient involvement in their care at this
time (OR = 0.83, 95% CI 0.70-0.98).
With regard to labour most women had not met the
staff caring for them before, however, women with a
physical disability were more likely to have done so (30%
vs. 23%) (Table 6). They were significantly less likely to
report having a choice of place of birth (59% vs. 80%), al-
though for some this was for medical reasons (24% vs.
5%) (p = <0.001) (data not shown). Fewer women with a
physical disability or long term condition reported being
able to choose a comfortable position in labour (43% vs.
57%), with some not being able to do so at all (19% vs.
12%). For pain relief in labour this group were significantly
more likely to have epidural anaesthesia (36% vs. 30%) and
to give birth by caesarean section (38% vs. 24%). Overall
perceptions of labour and birth care were largely positive,
with very few differences, the exception being that women
with a physical disability or long term condition were sig-
nificantly less likely to report feeling involved enough in
decision-making about their care (65% vs. 72%).
Postnatal care for physically disabled women involved
significantly longer postnatal stays (45% vs. 29% staying
for 3 days or more) (Table 7). There were also some dif-
ferences in early infant feeding: physically disabled were
women significantly less likely to put the baby to the breast
at least once (80% vs. 84%) and to go on to breastfeed in
the first few days (74% vs. 79%). Once home, there were no
differences in midwife contacts, receiving a postnatal check
or advice about contraception.
In terms of perceptions of postnatal care, about 70%
in both groups felt the length of their hospital stay was
about right. Smaller, but similar proportions of both
groups reported always being treated with kindness
and understanding (Table 7). Following adjustment, more
physically disabled women reported not having been given
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Table 4 Characteristics of women with different types of disability and their babies compared with non-disabled
women and their babies
Disability No disability
Physical condition Sensory Mental health Learning More than one
or illness disability disability disability
Characteristics n = 730 n (%) n = 197 n (%) n = 336 n (%) n = 120 n (%) n = 99 n (%) (n = 22,673) n (%)
Age group (years) ** **
<20 12 (1.6) 9 (4.6) 9 (2.7) 8 (6.8) 4 (4.04) 470 (2.1)
20–34 394 (54.0) 123 (62.4) 220 (65.5) 93 (77.5) 64 (64.7) 16990 (74.9)
35+ 324 (44.4) 65 (33.0) 107 (31.9) 19 (15.8) 31 (31.3) 5213 (23.0)
Ethnic group ** *
White 610 (83.6) 172 (87.8) 313 (93.4) 106 (88.3) 82 (83.7) 19375 (85.7)
Mixed 15 (2.1) 5 (2.6) 6 (1.8) 3 (2.5) 2 (2) 367 (1.6)
Asian or Asian British 41 (5.6) 12 (6.1) 9 (2.7) 3 (2.5) 8 (8.2) 1670 (7.4)
Black or Black British 52 (7.1) 5 (2.6) 6 (1.8) 4 (3.3) 3 (3.1) 880 (3.9)
Chinese or Other 12 (1.6) 2 (1.0) 1 (0.3) 4 (3.3) 3 (3.1) 328 (1.5)
Parity
Primiparous 351 (48.3) 101 (51.5) 145 (43.2) 67 (57.8) 45 (45.5) 11215 (49.6)
Multiparous 375 (51.7) 95 (48.5) 191 (56.8) 49 (42.2) 54 (54.5) 11380 (50.4)
Partner * * ** ** **
Yes 607 (83.2) 157 (79.7) 253 (75.3) 82 (68.3) 65 (65.7) 19628 (86.6)
No 123 (16.8) 40 (20.3) 83 (24.7) 38 (31.7) 34 (34.3) 3045 (13.4)
Language at home **
English 647 (90.9) 158 (83.2) 323 (96.7) 104 (90.4) 90 (90.9) 19789 (88.4)
Other 65 (9.1) 32 (16.8) 11 (3.3) 11 (9.6) 9 (9.1) 2588 (11.6)
Gestation at birth ** * * **
> = 37 weeks 630 (87.3) 172 (87.8) 298 (89.2) 107 (92.2) 79 (81.4) 20943 (92.9)
< 37 weeks 92 (12.7) 24 (12.2) 36 (10.8) 9 (7.8) 18 (18.6) 1593 (7.1)
Birth weight ** * **
> = 2500 g 664 (92.1) 177 (93.2) 303 (91.3) 108 (93.1) 84 (85.7) 21347 (95.2)
<2500 g 57 (7.9) 13 (6.8) 29 (8.7) 8 (6.9) 14 (14.3) 1088 (4.8)
*p < 0.01, **p < 0.001 Sensory disability: visually impaired, deaf and hearing impaired.

the information needed at this time (OR = 0.85, 95% CI
0.72-0.99).
Once home, over 70% of women in both groups re-
ported being given the help needed although, a signifi-
cant number of women with a physical disability or long
term condition would have liked to have seen a midwife
more often (26% vs. 21%). There were no differences
in relation to information about recovery and emotional
changes following childbirth or advice about infant feed-
ing. However, adjusted analysis showed significantly more
women with physical disability did not always receive ac-
tive support and encouragement with feeding compared
with non-disabled women (OR = 0.8, 95% CI 0.65-0.98).
Overall, postnatal care was significantly less likely to be
rated as good or better among women with a physical
disability (85% vs. 89%).
Women with sensory impairment
The experiences of 197 women with a sensory disability
(visual or hearing impairment) were compared with those
of non-disabled women. Maternal characteristics such as
age, ethnicity, language spoken at home and parity did not
differ significantly (Table 4). However, women in this group
were significantly less likely to have a partner (80% vs.
87%) and more likely to deliver preterm (12% vs. 7%).
For this group of women there were no differences in
the antenatal care received or in the perceptions of that
care, including aspects of communication and decision-
making, with 94% of women with sensory impairment
rating antenatal care as good (Table 5). Similarly for labour
and birth there were practically no differences between the
group with sensory impairment and the non-disabled
women in the care received and perceptions of care, with
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Table 5 Antenatal care received and perceptions of care for women with different types of disability
Physical condition Sensory Mental health Learning More than one No disability
& illness disability disability disability
Antenatal care received (n = 730) n (%) (n = 197) n (%) (n = 336) n (%) (n = 120) n (%) (n = 99) n (%) (n = 22,673) n (%)
First saw health professional by 682 (96.3) 175 (93.1) 311 (94.8) 94 (84.7) ** 88 (90.7) 21115 (95.3)
12 weeks
aOR (95% CI) 0.75 (0.50-1.14) 1.51 (0.83- 2.74) 0.85 (0.49-1.47) 3.29 (1.88-5.77) 1.38 (0.64-2.97) 1
Booking appointment by 12 weeks 495 (76.7) 129 (73.7) 226 (73.9) 64 (67.4) 63 (72.4) 15633 (75.7)
aOR (95% CI) 0.93 (0.77-1.13) 1.1 (0.77-1.57) 1.08 (0.83-1.41) 1.51 (0.96-2.38) 1.19 (0.73-1.94) 1
10 or more antenatal checks 274 (40.7)** 44 (25.1) 85 (28.7)* 20 (20.2) 32 (36.8)** 4376 (21.1)
aOR (95% CI) 2.51 (2.13-2.96) 1.26 (0.88-1.81) 1.48 (1.14-1.93) 0.8 (0.46-1.39) 1.98 (1.24-3.17) 1
4 or more scans during pregnancy 419 (58.5) ** 68 (36.4) 156 (46.6) ** 38 (32.5) 48 (49.5) ** 7223 (32.2)
aOR (95% CI) 2.83 (2.42-3.30) 1.18 (0.86-1.60) 1.83 (1.46-2.29) 0.96 (0.64-1.46) 1.89 (1.25-2.85) 1
Dating scan at 8–14 weeks of 690 (96.2) 180 (93.8) 315 (95.2) 102(90.3) 91(97.8) 21253 (95.2)
pregnancy
aOR (95% CI) 0.69 (0.46-1.06) 1.63 (0.90-2.96) 0.93 (0.55-1.60) 1.56 (0.78-3.11) 0.47 (0.11-2.04) 1
Testing for Down’s syndrome 534 (96.9) 133 (95.7) 226 (96.2) 73 (93.6) 66 (97.1) 16119 (96.8)
aOR (95% CI) 1.06 (0.61-1.82) 1.19 (0.48-2.98) 0.97 (0.48-1.95) 1.42 (0.54-3.78) 0.75 (0.18-3.14) 1
Mid-trimester (anomaly/20 weeks) 717 (99.4) 185 (98.9) 329 (98.8) 114 (100) 94 (97.9) 22143 (99)
scan
aOR (95% CI) 0.52 (0.19-1.41) 1.33 (0.33-5.35) 1.43 (0.51-4.04) NA 1.22 (0.27-5.54) 1
Attended NHS antenatal classes 230 (52.6) ** 68 (61.3) 103 (52.3) * 39 (56.5) 23 (39) ** 8193 (62.4)
aOR (95% CI) 1.54 (1.16-2.0) 0.77 (0.43- 1.41) 1.16(0.78-1.72) 1.77 (0.94- 3.31) 3.2 (1.68-6.17) 1
Maternal perceptions of antenatal
care
Always spoken to in a way you could 604 (83.4) 149 (78.8) 258 (77.2)* 78 (65.5)** 67 (69.1)** 18807 (83.8)
understand
aOR (95% CI) 0.97 (0.78-1.19) 0.72 (0.50-1.05) 0.67 (0.51-0.87) 0.42 (0.28-0.64) 0.51 (0.32-0.83) 1
Always involved enough in decisions 506 (70.3) 136 (73.1) 227 (68.6) 73 (62.4)** 51 (53.1)** 16469 (74.4)
about care
aOR (95% CI) 0.83 (0.70-0.98) 0.88 (0.63-1.23) 0.74 (0.58-0.94) 0.67 (0.45-1.01) 0.42 (0.27-0.64) 1
If contacted midwife, always given 392 (70.0) 99 (70.2) 189 (65.6) * 55 (57.9)* 49 (61.3) 11775 (72.8)
help when needed
aOR (95% CI) 0.85 (0.71-1.03) 0.93 (0.63-1.35) 0.69 (0.53-0.88) 0.63 (0.40-0.99) 0.66 (0.40-1.09) 1
Antenatal care overall rating ‘Good ‘ 669 (92.7) 182 (93.8) 294 (88.6) * 111 (93.3) 88 (90.7) 20830 (92.6)
aOR (95% CI) 1.0 (0.74-1.35) 1.06 (0.57-2.00) 0.65 (0.45-0.93) 1.55 (0.70-3.40) 1.01 (0.49-2.07) 1
*p < 0.01, **p < 0.001 Sensory disability: visually impaired, deaf and hearing impaired Significant OR in bold.

the exception that women with a sensory impairment were
significantly more likely to have previously met the staff
caring for them (33% vs. 23%) (Table 6). Like the non-
disabled women, almost all of those with sensory disabi-
lities rated labour and birth care positively. Postnatally, this
group of women were significantly more likely to have re-
ceived advice about infant feeding (47% vs. 36%) but were
less likely to breast-feed (69% vs. 79%). They were also sig-
nificantly more likely to have seen the midwife at least five
times (33% vs. 24%), but would like to have seen them
more (26% vs. 21%, p < 0.01). Just over 90% of this group
rated postnatal care as good or better. Similar findings
were observed after adjustment.
Women with mental health disability
For this group of 336 women self-identifying with men-
tal health problems there was a significant difference in
ethnicity in comparison with the non-disabled women,
with fewer women in this group coming from Asian or
Asian British and Black or Black British groups and
more speaking English at home (Table 4). They were sig-
nificantly less likely to have a partner (75% vs. 87%) and
were at significantly higher risk of delivering a preterm
(11% vs. 7%) or LBW baby (9% vs. 5%).
Antenatally almost all the women in both groups had
seen a health professional about their pregnancy care by
12 weeks (Table 5) and approximately three quarters (74%)
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Table 6 Labour and birth care received and perceptions of care for women with different types of disability
Disability
Physical condition Sensory Mental health Learning More than one No disability
& illness disability disability disability
Labour and birth care received (n = 730) n (%) (n = 197) n (%) (n = 336) n (%) (n = 120) n (%) (n = 99) n (%) (n = 22,673) n (%)
Had met staff before labour 213 (30.0) ** 61 (33.3) * 76 (23.3) 39 (33.6) * 41 (42.3) ** 5191 (23.3)
aOR (95% CI) 0.74 (0.62-0.88) 0.58 (0.42-0.80) 0.95 (0.73-1.25) 0.6 (0.39-0.90) 0.48 (0.31-0.75) 1
Had choice of place of birth 406 (58.5) ** 136 (74.7) 220 (69.6) ** 84 (73.0) 53 (58.9) ** 17329 (80.1)
aOR (95% CI) 1.48 (1.19- 1.84) 1.14 (0.75- 1.72) 1.53 (1.14- 2.05) 1.26 (0.76-2.07) 1.76 (1.00- 3.08) 1
Able to choose a comfortable 229 (42.7)** 93 (55.7) 161 (54.8) 59 (52.2) 37 (45.1) 11308 (57.2)
position in labour
aOR (95% CI) 1.82 (1.52-2.81) 0.96 (0.69-1.33) 1.12 (0.88-1.43) 1.12 (0.75-1.67) 1.55 (0.97-2.47) 1
Given epidural for pain relief in 193 (35.5) * 41 (24.6) 93 (31.1) 30 (26.5) 22 (26.8) 5746 (28.9)
labour
aOR (95% CI) 0.71 (0.59-0.86) 1.25 (0.84-1.86) 0.81 (0.62-1.05) 1.03 (0.65-1.63) 1.15 (0.67-1.97) 1
Given pethidine for pain relief in 159 (29.2) 55 (32.9) 104 (34.8) 30 (26.5) 23 (28.0) 5948 (29.9)
labour
aOR (95% CI) 1.01 (0.83-1.24) 0.89 (0.63-1.25) 0.76 (0.59-0.97) 1.4 (0.88-2.25) 1.15 (0.67-1.96) 1
Caesarean section birth 271 (37.6) ** 47 (24.4) 77 (23) 21 (18.1) 29 (30.2) 5437 (24.2)
aOR (95% CI) 1.84 (1.52-2.24) 0.74 (0.49-1.13) 1.07 (0.81-1.44) 0.90 (0.56-1.46) 1.38 (0.82-2.33) 1
Maternal perceptions of labour
and birth care
Partner/companion definitely 577 (81.4) 159 (84.6) 257 (79.3) 92 (78.6) 72 (77.4) 18677 (84.4)
welcomed
aOR (95% CI) 1.06 (0.62-1.80) 2.19 (1.07-4.46) 1.6 (0.87-2.95) 1.4 (0.50-3.95) 1.8 (0.69-4.70) 1
Definitely had confidence and 526 (72.8) 134 (70.2) 225 (68.4) 72 (61.5)* 59 (60.2)* 16617 (74.0)
trust in staff
aOR (95% CI) 1.36 (0.95-1.94) 1.37 (0.73-2.57) 1.88 (1.18-3.00) 1.75 (0.86-3.57) 3.05 (1.56-5.95) 1
Always spoken to in a way you 592 (82.5) 157 (81.3) 268 (80.5) 82 (68.9)** 69 (71.1)** 18914 (84.3)
could understand
aOR (95% CI) 1.06 (0.69-1.63) 0.96 (0.68-1.36) 0.59 (0.37-0.95) 0.66 (0.39-1.13) 1.23 (1.00-1.50) 1
Always involved enough in 458 (64.7)** 134 (71.7) 217 (67.0) 72 (61.0)* 55 (56.7)* 15917 (72.1)
decisions about care
aOR (95% CI) 0.78 (0.57-1.06) 0.97 (0.54-1.73) 0.57 (0.39-0.85) 1.05 (0.52-2.13) 0.37 (0.21-0.66) 1
Definitely received the pain relief 287 (55.8) 94 (60.3) 163 (56.2) 59 (56.7) 38 (50.7) 11356 (60.5)
you wanted
aOR (95% CI) 1.27 (1.00-1.60) 0.85 (0.54-1.34) 1.62 (1.21-2.15) 0.68 (0.37-1.25) 2.09 (1.24-3.53) 1
Not left alone and worried during 599 (83.4) 150 (78.1) 258 (79.1) 87 (75.0)* 71 (74.7) 18824 (84.4)
labour
aOR (95% CI) 1.1 (0.90-1.36) 1.51 (1.06-2.17) 1.47 (1.11-1.94) 1.62 (1.04-2.53) 1.59 (0.94-2.67) 1
Labour and birth care overall 662 (92.1) 182 (93.8) 296 (90.8) 108 (90.8) 79 (79.8)** 20971 (93.6)
rating ‘Good’
aOR (95% CI) 0.79 (0.59-1.05) 1.25 (0.68-2.30) 0.66 (0.44-0.98) 0.89 (0.46-1.73) 0.35 (0.20-0.61) 1
*p < 0.01, **p < 0.001 Sensory disability: visually impaired, deaf and hearing impaired Significant OR in bold.

had attended their booking appointment by 12 weeks. Sig-
nificantly greater numbers of women with mental health
conditions had 10 or more antenatal checks (29% vs. 21%)
and had 4 or more ultrasound scans (47% vs. 32%) al-
though significantly fewer attended antenatal classes (52%
vs. 62%). This group was significantly less likely to feel
talked to in a way they could understand (77% vs. 84%),
that the midwifery help needed was less likely to be pro-
vided (66% vs. 73%) and the proportion rating antenatal
care as good was lower than that of the non-disabled
women (89% vs. 93%).
Significantly fewer women with mental health prob-
lems reported having a choice about the location of birth
(70% vs. 80%), but otherwise there were no differences
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Table 7 Postnatal care received and perceptions of care for women with different types of disability
Disability
No
Physical condition Sensory Mental Learning More than one disability
& Illness disability disability disability
Postnatal care received (n = 730) (n = 197) (n = 336) (n = 120) (n = 99) (n = 22,673)
n (%) n (%) n (%) n (%) n (%) n (%)
Length of postnatal hospital stay < 3 days 316 (44.7) ** 59 (31.2) 110 (34.2) 34 (30.6) 45 (46.9) ** 6230 (28.6)
aOR (95% CI) 1.92 (1.64-2.25) 1.13 (0.81 -1.58) 1.43 (1.12-1.82) 1.14 (0.75-1.74) 2.18 (1.42-3.35) 1
Baby put to breast at least once 576 (79.8)* 153 (78.9) 245 (73.6)** 86 (74.1)* 71 (72.5)* 18987 (84.4)
aOR (95% CI) 1.47 (1.18-1.83) 1.28 (0.87 -1.86) 1.48 (1.13-1.95) 1.29 (0.81 -2.03) 1.51 (0.86 -2.65) 1
Full or partial breast milk feeds in first 529 (73.5 )** 133 (69.2)* 223 (67.3)** 75 (65.2)** 58 (60.4)** 22001 (79.4)
few days
aOR (95% CI) 0.94(0.64-1.39) 0.98 (0.72-135) 0.98 (0.63-1.53) 0.71 (0.43-1.15) 1.48 (1.22-1.79) 1
Total number of postnatal midwife 166 (24.0) 61 (33.0) * 98 (31.0)* 35 (31.3) 23 (25.8) 5260 (24.0)
contacts > = 5
aOR (95% CI) 1 (0.83-1.20) 1.48 (1.08-2.05) 1.49 (1.16-1.91) 1.6 (1.03-2.47) 1.16 (0.70-1.94) 1
Received postnatal check 638 (88.5) 173 (89.2) 283 (85.5) 99 (83.9) 86 (87.8) 19927 (89.0)
aOR (95% CI) 1.07 (0.84-1.36) 0.89 (0.55-1.44) 1.32 (0.96-1.80) 1.27 (0.74-2.16) 0.94 (0.49-1.80) 1
Given advice about contraception 640 (89.6) 176 (92.2) 296 (89.4) 110 (95.7) 84 (88.4) 20569 (92.2)
aOR (95% CI) 1.35 (0.73-2.50) 1.0 (0.64-1.55) 3.01 (1.16-7.81) 0.8 (0.39-1.64) 1.39 (1.07-1.79) 1
Perceptions of postnatal care
Always treated with kindness and 422 (60.0) 116 (62.4) 192 (59.3) 64 (57.7) 51 (53.7) 13869 (63.6)
understanding in hospital
aOR (95% CI) 0.85 (0.72-1.00) 1 (0.73-1.38) 0.79 (0.63-1.00) 0.89 (0.59-1.34) 0.7 (0.46-1.08) 1
Always given information/explanations 345 (49.0) 105 (56.1) 159 (48.6) 54 (48.2) 43 (45.7) 11555 (52.9)
needed in hospital
aOR (95% CI) 0.85 (0.72-0.99) 1.18 (0.87-1.60) 0.78 (0.62-0.98) 0.95 (0.63-1.42) 0.85 (0.55-1.31) 1
Felt length of stay about right 494 (71.3) 128 (69.6) 219 (68.4) 63 (57.8)* 58 (63.0) 15497 (72.6)
aOR (95% CI) 0.93 (0.78-1.10) 0.85 (0.61-1.19) 0.82 (0.64-1.05) 0.51 (0.34-0.77) 0.68 (0.43-1.06) 1
At home if contacted midwife/health 356 (71.3) 98 (71.5) 167 (70.5) 61 (69.3) 48 (63.2) 11466 (75.6)
visitor, help always given
aOR (95% CI) 0.88 (0.56-1.38) 0.55 (0.26-1.14) 0.93 (0.48-1.80) 3.74(0.51-27.2) 0.41 (0.19-0.88) 1
Would have liked to see a midwife more 180 (25.7)* 49 (26.1)* 66 (20.2) 33 (28.7)* 28 (31.1)* 4624 (20.9)
aOR (95% CI) 0.78 (0.65-0.94) 0.67 (0.48-0.93) 0.96 (0.72-1.28) 0.72 (0.47-1.11) 0.63 (0.39-1.04) 1
Definitely given enough information 292 (41.1) 92 (49.5) 118 (36.9) 51 (44.3) 40 (41.2) 9154 (41.9)
about recovery after birth
aOR (95% CI) 0.83 (0.69-1.02) 1.21 (0.80-1.85) 0.6 (0.46-0.77) 1.04 (0.63-1.70) 0.54 (0.33-0.88) 1
Definitely given enough information 280 (41.1) 92 (49.7) 132 (41.4) 49 (44.1) 38 (42.2) 8876 (42.2)
about emotional changes
aOR (95% CI) 0.85 (0.70-1.02) 0.96 (0.66-1.38) 0.95 (0.72-1.25) 0.86 (0.53-1.37) 0.52 (0.32-0.83) 1
Always had active support and 301 (42.6) 98 (52.7) 133 (42.0) 46 (40.7) 42 (44.2) 9529 (43.8)
encouragement with feeding
aOR (95% CI) 0.80 (0.65-0.98) 1.58 (0.92-2.71) 0.81 (0.60-1.10) 1.08 (0.63-1.85) 0.63 (0.37-1.06) 1
Always had consistent advice about 246 (35.4) 86 (46.7)* 105 (33.0) 41 (36.9) 33 (35.1) 7777 (36.1)
infant feeding
aOR (95% CI) 0.78 (0.61-0.98) 0.59 (0.39-0.88) 0.69 (0.50-0.93) 0.82 (0.47-1.42) 0.56 (0.32-0.98) 1
Postnatal care overall rating ‘Good’ 611 (85.0)* 177 (91.2) 284 (85.8) 106 (88.3) 76 (77.6)* 19858 (88.5)
aOR (95% CI) 0.75 (0.60-0.93) 1.27 (0.74-2.15) 0.78 (0.57-1.07) 1.18 (0.64-2.16) 0.54 (0.33-0.90) 1
*p < 0.01, **p < 0.001 Sensory disability: visually impaired, deaf and hearing impaired Significant OR in bold.
Redshaw et al. BMC Pregnancy and Childbirth 2013, 13:174
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in the care provided during labour and birth including
type of delivery and pain relief given or in the women’s
perceptions of care at this time compared with non-
disabled women (Table 6). However, following adjusted
analysis a significant difference was found with more
women in this group rating their labour and birth care
as poor (OR = 0.44, 95% CI 0.44-0.98).
Few significant differences with regard to postnatal
care were found, however, mothers with mental health
problems were more likely to have 5 or more midwife
contacts (31% vs. 24%) and were significantly less likely
to put the baby to the breast at all (74% vs. 84%) or to
breastfeed in the first few days (67% vs. 79%) (Table 7).
Additionally, following adjusted analysis women with
mental disability were significantly less likely to report
that they always had been given information and expla-
nation needed in hospital (OR = 0.78, 95% CI 0.62-0.98).
Women with learning disability
For this group of 120 women with learning disability the
proportion with partners at the time of the survey was
significantly less than for the non-disabled women (68%
vs. 87%). Like the non-disabled women, most were aged
between 20 and 34 years, however this group was slightly
more likely to be represented among the youngest women
aged less than 20 years of age (7% vs. 2%) (Table 4). No
difference was found by parity or in the proportion giving
birth to preterm or LBW babies.
Women with learning disability were significantly less
likely to see a health professional by 12 weeks gestation
(85% vs. 95%) and were no more likely to have higher
numbers of antenatal checks, scans or screening than
non-disabled women (Table 5). However, perceptions of
care were less positive, with markedly fewer learning dis-
abled women feeling that they were always spoken to in
a way they could understand (66% vs. 84%), involved in de-
cisions about their care (63% vs. 74%) and always given
help after contacting a midwife (58% vs. 73%) compared
with non-disabled women. Although this group were less
likely to have positive views of specific aspects of their
pregnancy care, almost all rated their overall antenatal care
as good or better (93%).
For labour and birth, significantly more learning disabled
women had met the staff caring for them previously (34%
vs. 23%) although proportions were quite low for most
groups (Table 6). No significant differences were found in
the use of pain relief or in mode of delivery. Learning dis-
abled women were more likely to be critical about specific
aspects of their care: significantly fewer definitely had con-
fidence and trust in staff (62% vs. 74%) and fewer were al-
ways spoken to in a way they could understand (68% vs.
84%). However, significantly fewer were not left alone and
worried during labour (75% vs. 84%) and there was no
difference in the overall rating of care.
Page 11 of 14
With regard to postnatal care, this group was no more
likely to have stayed 3 days or more than the non-
disabled group and significantly fewer agreed that their
length of stay was about right (58% vs. 73%). Initiation and
continued breastfeeding in the first few days were signifi-
cantly less common among the learning disabled women, a
significantly greater proportion of whom would liked to
have seen a midwife more (29% vs. 21%). Communication
and information during this phase of care, as well as the
overall rating, were no different between the two groups.
Following adjustment similar findings on all the data items
listed were observed.
Women with more than one type of disability
A small number of women identified themselves as ha-
ving more than one type of disability (n = 99), with nine
having three or more disabilities. Most of this multiply-
disabled group had a mental health problem as well as
another disability (70%) and of those with a mental health
problem, most had a physical condition or illness (75%)
(data not shown).
Women in this group were significantly less likely to
have a partner (66% vs. 87%) and more likely to deliver a
preterm (19% vs. 7%) or LBW baby (14% vs. 5%) (Table 4).
They were also significantly more likely to have 10 or more
antenatal checks (37% vs. 21%) and 4 or more pregnancy
scans (50% vs. 32%) (Table 5). They were also more likely
to be critical about communication with staff during their
pregnancy.
For labour and birth care, the women in this group
were significantly more likely to have met the staff be-
fore (42% vs. 23%) and less likely to have a choice of
place of birth (59% vs. 80%) (Table 6). Perceptions at this
time were less likely to be positive, with significantly
fewer women feeling they always had confidence and
trust in the staff and that communication about their
care was always effective. This was reflected in the sig-
nificantly lower proportion rating labour and birth care
as good or better (80% vs. 94%). This group of disabled
women were significantly more likely to stay in hospital
for at least 3 days (47% vs. 29%) (Table 7) and as with
several of the other disabled groups, were significantly
less likely to breastfeed and wished they had seen a mid-
wife more. There were no significant differences in percep-
tions of communication or information giving postnatally,
although they were significantly less likely to rate postnatal
care overall as good or better (78% vs. 89%) in com-
parison with non-disabled women. Adjustment did not
alter these findings.
Discussion
The study findings across a range of disabilities present
up to date information about disabled women’s use of
maternity services and their views of the care provided.
Redshaw et al. BMC Pregnancy and Childbirth 2013, 13:174
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Overall, women with disabilities were as likely to access
healthcare early on in their pregnancy as other women, but
were likely to have more antenatal checks and ultrasound
scans, to be delivered by caesarean section, to have longer
stays in hospital and were less likely to breastfeed. Al-
though the absolute differences were quite small, in general
women with disabilities were more likely to be critical
about some aspects of their care, particularly those relating
to communication and support. While mothers with dis-
ability were more likely to be among those with higher
numbers of postnatal midwife visits, a greater proportion
would have liked more contact still in comparison with the
non-disabled women. However, the women identifying as
having longstanding conditions and illnesses were not a
homogenous group and the comparisons of the characte-
ristics and experience of each of the different groups
with the non-disabled women illustrate this point.
Women with a physical disability, a mental health dis-
ability and those who had more than one disability all
accessed antenatal services more; those who were phy-
sically disabled had less choice about place of birth and
were less involved in decisions about their labour and
birth care; women in all the different groups, except
those with mental health problems, were more likely to
have previously met the staff caring for them during
labour and birth and women with learning disabilities
were more critical about support and communication
with staff both antenatally and intrapartum.
The findings presented reflect the different experiences
of the diverse groups of women with disabilities and the
way in which maternity care has to some extent begun to
match needs, although there is evidence of some gaps, par-
ticularly in the relationships which women need to develop
with the staff caring for them at this important time in
their lives. This point is relevant in the context of both
short and longer term continuity of care. Several groups
stand out: women with mental health problems, those with
learning disabilities and women who had more than one
type of disability. Women with more than one identified
disability or mental health problems were least likely to re-
port a positive experience of pregnancy and birth. The dif-
ferences were quite pronounced for some aspects of care
such as communication, involvement in decisions, particu-
larly in relation to the antenatal and labour and birth
phases of care. Women with mental health problems are a
heterogeneous group and training of healthcare profes-
sionals on how to communicate effectively and provide
good quality care for this group is critical in terms of
addressing their specific needs. However, such workers
may be anxious about providing adequate care for this
group of women who may in regular contact with other
NHS services [22,23].
In interpreting the findings it must be held in mind
that the women with learning or multiple disabilities were
Page 12 of 14
the smaller groups in the study. Learning disabled women
may experience simultaneous discrimination and disadvan-
tage while having additional support needs in terms of
their sexuality and motherhood [24]. However, there is a
growing interest in the health and welfare of women with
learning disabilities, as evidenced in the literature [25]. In
the present study it was clear that the needs of, for ex-
ample, those women with physical disabilities were in
many respects being better addressed, with greater use of
services and less critical views expressed about care, par-
ticularly during pregnancy and labour and birth.
Findings from a study in Norway, involving 21 women
with physical disabilities, addressed the social barriers
that faced such women, suggesting that negative attitudes
and limited knowledge and experience among health care
professionals prevent women from receiving the perinatal
care to which they are entitled [26]. Women with disabil-
ities were slightly older and less likely to have partners.
Similar findings have also been described in a review [15].
Increased risks of instrumental delivery and adverse preg-
nancy outcomes have been reported in women with phys-
ical disabilities and longstanding conditions [15,27,28], a
finding consistent with the data in the present study relat-
ing to a higher incidence of LBW and preterm birth.
Limitations of this descriptive study which relied on
self-report, include the survey response of 52% and that
no data were collected on socioeconomic status or educa-
tional attainment. However, the response rate was similar
to other surveys [19] and while fewer younger women
participated, the sample was largely representative of the
population of women giving birth in England in 2010.
While women with disabilities may have been less likely to
take part, nevertheless a substantial number self-identified
with a disability or disabling condition. This enabled a
comparison between the experience of women with dis-
abilities and non-disabled mothers, but also some explor-
ation of differences in care and perceptions of women with
different types of disability. The numbers were not suffi-
cient to detect more subtle differences between different
types of disability, but were large enough to present the dif-
ferences explored with fairly broad categories. The findings
of this study were robust and the findings were largely
maintained after adjustment for confounding factors.
The large scale nature of this national study and the
many women responding has allowed us to describe
some of the issues that smaller scale studies cannot address.
While some research on disability may be better carried
out by interviewing women and hearing their views directly
[29], it has also been argued that in anonymous surveys
women may be more frank in describing their experience
of care [30].
Services providing maternity care may not be equipped
to deal with the needs of women with disabilities, both
practically and in organisational terms [31]. Transport,
Redshaw et al. BMC Pregnancy and Childbirth 2013, 13:174
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access, the design of buildings and facilities, appropriate
equipment and the attitudes of staff towards disability
are real issues for disabled women that were not directly
addressed in this study [15], but which are likely to have
been reflected in the views reported. Care may be pro-
vided by a range of different providers and not co-
located so that women may experience care that is
fragmented and difficult to access. Many women with
disabilities have pre-existing medical conditions and are
also likely to experience complications and health prob-
lems arising from the pregnancy which have a potential
impact on their health and wellbeing at this time [15].
All of these aspects of maternity care for disabled women
are worthy of further research. The findings from this
study may enable maternity service providers to more sat-
isfactorily pinpoint the required actions in caring for preg-
nant women with disability. Further research should target
the experience, use of services and needs of women with
different and multiple disabilities from diverse groups,
using qualitative as well as quantitative methodologies. It
could also include research on the role of partners and
level of engagement. Audit and review of maternity ser-
vices by healthcare providers should include a focus on the
needs of women with disabilities represented by the diffe-
rent groups in this study.
Conclusion
Women with disability have been to some extent an in-
visible population within the broader maternity population.
It is anticipated that this study will provide evidence to
support care improvements. The findings will contribute
to maternity services more satisfactorily pinpointing the
required actions in caring for pregnant women with dif-
ferent types of disability and in training staff to support
women with a wide range of conditions.
We believe this study is the first to compare the use of
maternity services among disabled women in the UK.
We have described disabled women’s experiences of care
during pregnancy, childbirth and following birth. Evi-
dence from the survey largely indicates that in compari-
son with non- disabled women, those with disabilities
are in general cared for similarly during pregnancy, birth
and postnatally, but like all women, would prefer to have
individualised care [32-34]. However, some differences
were evident, with disabled women using the services
more intensively and some gaps in provision were high-
lighted where needs could be better addressed. The
implications for practice include taking the opportu-
nities for training staff and improving aspects of mater-
nity care for disabled women, namely in support and
communication and infant feeding. This could contribute
to improved outcomes for both women and babies and
which could facilitate greater empowerment of the
women receiving care.
Page 13 of 14
Competing interests
The authors declare they have no competing interests.
Authors’ contributions
The authors listed have all contributed to this paper: MR designed the
analysis plan; MR and RM drafted the main manuscript; HG carried out the
statistical analyses; MR, RM, HG and RG contributed to the interpretation of
findings and drafting the manuscript. All authors have read and approved
the final manuscript.
Acknowledgments
This paper reports on an independent study which was funded by the Policy
Research Programme in the Department of Health. The views expressed are
not necessarily those of the Department of Health. The Care Quality
Commission was responsible for the original survey and granted access to
the data. We are grateful to members of disability advisory group and to
Jane Henderson for their comments on the manuscript. We are most
indebted to all the women who responded to the survey.
Received: 13 May 2013 Accepted: 10 September 2013
Published: 13 September 2013
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doi:10.1186/1471-2393-13-174
Cite this article as: Redshaw et al.: Women with disability: the experience
of maternity care during pregnancy, labour and birth and the postnatal
period. BMC Pregnancy and Childbirth 2013 13:174.

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