REVIEW JURNAL KUALITATIF

dibuat untuk pemenuhan Ujian Tengah Semester (UTS) mata kuliah Metode Penelitian Kualitatif

Dosen Pengampu :
Prof. Drs. Subandi, M.A., Ph.D
Dr. Budi Andayani, M.A., Psikolog

Disusun oleh
Oleh Aqyas Dini Nisa
21/486383/PPS/4123

MAGISTER PSIKOLOGI PROFESI PEMINATAN KLINIS

FAKULTAS PSIKOLOGI
UNIVERSITAS GADJAH MADA
YOGYAKARTA
2021
 JURNAL I

Judul Artikel ‘‘I take up more responsibilities for my family’s wellbeing’’ A

qualitative approach to the cultural aspects of resilience seen among
young adults in Bengaluru, India
Penulis Sudharshan Hebbani, Krishnamachari Srinivasan
Tahun Publikasi 2016
Nama Jurnal Asian Journal of Psychiatry
Edisi 22

1. Isi Artikel
a. Latar Belakang
Faktor sosial budaya dan etnisitas mempengaruhi cara orang memproses
pengalaman menyulitkan (Arrington & Wilson, 2000). Sumber daya yang terlibat dalam
resiliensi seseorang tertanam dalam konteks sosial budaya di tempat ia tinggal. Berbeda
dengan orang Barat yang menyamakan resiliensi dengan penguasaan lingkungan, budaya
Timur cenderung lebih menekankan pada penerimaan pengalaman (Zaustra et al., 2010).
Keluarga dipengaruhi oleh budaya melalui transfer norma budaya kepada anggota
individu dan dengan demikian mempengaruhi perilaku mereka (Johnson, 1995)

b. Teori
• Family Ecology Framework Model
• Penyakit orang tua dapat mempengaruhi keturunan mereka melalui mediator tingkat
individu (misalnya stres dan stigma) dan keluarga (misalnya distribusi peran)
(Pedersen & Revenson, 2005).

c. Metode
Penelitian ini didesain menggunakan pendekatan etnografi. Para subjek berasal dari
mata air (berusia antara 16 dan 24 tahun) dari orang tua yang dirawat karena kondisi
kejiwaan utama, keganasan dan kondisi medis kronis dengan cacat fisik terkait.
Mayoritas subjek berasal dari kelas menengah ke bawah.
 Para subjek direkrut dari St. John's Medical College Hospital (SJMCH), sebuah
rumah sakit perawatan tersier yang berlokasi di Bengaluru dan sebagian besar melayani
pelanggan perkotaan.
Subjek memiliki kriteria sebagai berikut:
• Berusia antara 16 dan 24 tahun.
• Setidaknya salah satu orang tua subjek harus didiagnosis dengan kondisi medis
atau kejiwaan kronis.
• Harus mendapat skor 50 atau lebih pada Connor Davidson’s Resilience Scale
(CD-RISC).
• Untuk memfasilitasi diskusi kelompok terfokus dan wawancara mendalam,
subjek harus berbicara dalam bahasa yang diketahui peneliti (yaitu Inggris,
Kannada dan/atau Tamil)

Metode pengambilan data yang digunakan dalam penelitian ini adalah focus group
discussion dan wawancara mendalam. Diskusi kelompok direkam menggunakan
perekam suara digital dan sebagai tambahan peneliti membuat catatan selama diskusi.
Pertanyaan yang digunakan dapat dilihat pada Tabel 1.

Tabel 1. Panduan Pertanyaan

Kategori Pertanyaan Kalimat Pertanyaan
Pertanyaan pembuka • Apa pemahaman Anda tentang situasi yang menantang?
• Faktor apa yang mempengaruhi individu untuk
mengalami tekanan karena situasi yang menantang?
Pertanyaan awalan Apa yang membantu seorang individu untuk
mempertahankan sikap positif meskipun menghadapi situasi
yang menantang?
Pertanyaan transisi Apa faktor/sumber daya yang membantu seseorang dalam
mengatasi kesulitan?
Pertanyaan kunci Bagaimana menurut Anda lingkungan sosial budaya kita
mempengaruhi kemampuan untuk menjalani kehidupan
yang positif bahkan jika kita menghadapi stres?
 Data penelitian dianalisis menggunakan pendekatan grounded theory. Grounded
theory adalah metode analitis yang memungkinkan teori muncul dari data dan berusaha
membangun daripada menguji teori. Perangkat lunak yang digunakan yaitu NVivo.
Berdasarkan pedoman wawancara, buku kode dibuat menggunakan perangkat lunak.

d. Hasil
Penelitian ini menghasilkan dua tema utama, yaitu sebagai berikut.
a) Tema 1: Keluarga, peran/tanggung jawab dan ketahanan yang didefinisikan secara
sosial
• Pentingnya mereka melekatkan diri pada keluarga sebagai sebuah institusi dan
untuk melindungi statusnya dalam masyarakat
• Distribusi peran dan tanggung jawab yang tidak merata menganggapnya sebagai
tugas mereka untuk berkontribusi pada kesejahteraan keluarga asal mereka
• Keluarga sebagai suatu sistem memberikan rasa kontinuitas dan merupakan
sumber dukungan sosial
• Peran dan tanggung jawab wajib yang ditetapkan dan dikenakan pada individu oleh
institusi sosial tradisional seperti keluarga, masyarakat, agama, dll
• Seberapa erat orang-orang dan seberapa siap mereka dalam memberikan bantuan
kepada orang lain yang membutuhkan

b) Tema 2: Ritual dan spiritualitas

• Melakukan ritual seperti berdoa, mengunjungi tempat ibadah dll
• Subjek percaya bahwa Tuhan bukan hanya kekuatan supranatural tetapi juga teman
yang dapat mereka percaya dan menikmati hubungan pribadi yang dekat. Jadi
Tuhan adalah teman, penasihat, dan sumber dukungan
• Persepsi kesulitan dalam hidup dan makna yang mereka lihat di dalamnya
• ‘Hidup adalah ujian’, ‘Masalah yang dihadapi dalam hidup adalah tantangan untuk
menguji tekad seseorang’, ‘Kegagalan mengajarkan seseorang untuk berkembang’
adalah beberapa tema umum yang diungkapkan oleh para subjek

e. Pembahasan
Berdasarkan hasil analisis data, tema utama yang ditemukan pada subjek yaitu
menggarisbawahi pentingnya peran keluarga, kekerabatan yang lebih luas, komunitas
 dan praktik keagamaan dalam meningkatan resiliensi pada pemuda dengan kondisi
berisiko. Selain itu, jawaban subjek juga menunjukkan adanya hubungan timbal balik
antara keluarga dan individu di dalam masyarakat.
Hal lain yang juga muncul dari penelitian ini adalah pentingnya menjaga
kekompakan dan kebersamaan keluarga dan, pada gilirannya, memberikan kekuatan dan
penghiburan bagi individu di saat-saat sulit. Hubungan erat keluarga ini juga didukung
dengan adanya kepatuhan terhadap tradisi yang didorong oleh budaya seperti partisipasi
dalam upacara dan ritual keagamaan, pameran dan festival komunitas yang membantu
membangun jaringan dukungan sosial yang kuat baik di dalam maupun di luar keluarga.
Dengan demikian, pentingnya agama dan partisipasi dalam festival dan ritual keagamaan
memainkan peran memfasilitasi dalam mempertahankan penguasaan dan kompetensi
seorang individu di masa krisis.

f. Kesimpulan
Faktor-faktor yang terkait dengan sistem keluarga tradisional di India yang
memberikan pengasuhan dan keterhubungan emosional dan memiliki ikatan agama yang
kuat dapat dimasukkan ke dalam model intervensi komunitas untuk mempromosikan
ketahanan di antara anak-anak berisiko tinggi.

2. Review Artikel
a. Kelebihan artikel
• Penggunaan teori sebagai kerangka
• Ada keterwakilan dari segi parental illness, latar belakang pendidikan dan domisili
• Penelitian telah di-review oleh komite etik St. John's Medical College Hospital

b. Kekurangan artikel
• Tidak menyebutkan kritik terhadap studi
• Diskusi dan pembahasan sangat singkat sehingga kurang mendalam
• Tidak ada penjelasan detail tentang proses analisis data
3. Refleksi
a. Pembelajaran Metode penelitian kualitatif
Penelitian ini memberikan wawasan bagi saya terkait pendekatan grounded theory
di dalam penelitian kualitatif. Selain itu, pengetahuan saya seputar penelitian kualitatif
bertambah karena disebutkan tentang penggunaan software NVivo dalam pengolahan
data.

b. Pembelajaran Profesional
Melalui penelitian ini, saya menjadi lebih memahami bagaimana aspek religiusitas
dan spiritualitas, dukungan keluarga dan dukungan masyarakat/komunitas dapat
membantu seseorang melalui fase hidup yang penuh tekanan. Selain itu, hasil penelitian
ini juga menggarisbawahi pentingnya pemaknaan seseorang terhadap suatu situasi yang
sulit dapat mempengaruhi tingkat resiliensi yang dimilikinya. Ini dapat menjadi aspek
yang perlu diidentifikasi dan diintervensi di dalam proses konseling kepada klien dengan
kondisi yang serupa.
 JURNAL II

Judul Artikel Reflecting on Parental Terminal Illness and Death During

Adolescence: An Interpretative Phenomenological Analysis
Penulis Jennifer Cafferkya, Samantha Banbury, Catherine Athanasiadou-
Lewisa
Tahun Publikasi 2018
Nama Jurnal Interpersona: An International Journal on Personal Relationships
Edisi 12

1. Isi Artikel
a. Latar Belakang
Sekitar 41.000 anak muda, di bawah usia 18 tahun, kehilangan orang tua setiap
tahun di Inggris (Childhood Bereavement Network, 2014; Winston's Wish, 2016), dan
sejumlah besar kematian ini akan didahului oleh periode penyakit serius. Ketika penyakit
menjadi tidak dapat disembuhkan/berakhir, hal itu dapat menimbulkan stresor yang
signifikan bagi anggota keluarga; khususnya kaum muda (Thastum, Johansen, Gubba,
Olesen, & Roma, 2008). Remaja, khususnya, dianggap paling rentan terhadap hasil
psikososial negatif ketika orang tuanya tidak dalam kondisi sehat (Grabiak, Bender, &
Puskar, 2007) dan telah ditemukan bahwa penyakit terminal orang tua (parents with
terminal illness—selanjutnya disebut PTI) dapat menghambat proses perkembangan
normatif dan menyebabkan konsekuensi psikologis jangka panjang untuk kelompok ini
(Ohannessian, 2007; Visser, Huizinga, van der Graaf, Hoekstra, & Hoekstra-Weebers,
2004). Penelitian lain juga menyebutkan bahwa hanya sebagian kecil remaja dengan
masalah kesehatan mental yang mengakses pengobatan atau layanan pendampingan
(Reardon et al., 2017). Dengan demikian, remaja yang berduka dan remaja dengan orang
tua yang sakit parah (terminal illness) mungkin merupakan kelompok yang rentan,
ditambah kemungkinan mereka sulit untuk dilibatkan dan kemudian didukung (Bremner,
2000).

b. Metode
Penelitian ini bertujuan untuk menyelidiki bagaimana individu yang mengalami
PTI dan berkabung selama masa remaja mencerminkan dan memahami pengalaman
mereka; dengan pertimbangan tambahan yang diberikan pada persepsi dan pengalaman
dukungan mereka selama periode ini. Peneliti secara khusus menggunakan Interpretative
Phenomenological Analysis (IPA). IPA berasal dari tradisi hermeneutik, untuk
menciptakan pendekatan idiografis dan induktif, yang bertujuan untuk mengeksplorasi
pengalaman hidup pribadi individu; dengan fokus pada persepsi individu atau proses
pembuatan akal (Finlay, 2009). Landasan hermeneutik dalam IPA tercermin dalam
keterlibatan peneliti dalam memahami dan menafsirkan pengalaman subjek (Smith et al.,
2009). Sejalan dengan pendekatan yang dipilih, wawancara semi-terstruktur dilakukan
dengan enam subjek dan wawancara direkam, ditranskripsi, dan kemudian dianalisis
(Smith et al., 2009).
Subjek diharuskan memiliki orang tua yang menerima diagnosis formal TI saat
berusia 16-18. Mengingat desain retrospektif dan sifat reflektif dari data yang dicari,
hanya orang dewasa (yaitu di atas 18 tahun) yang dimasukkan dalam penelitian. Subjek
terdiri dari enam orang, lima perempuan dan satu laki-laki, semuanya adalah orang
Inggris Kaukasia dan fasih berbahasa Inggris sebagai bahasa utama mereka.
Wawancara semi-terstruktur dilakukan melalui telepon selama 40 sampai 60 menit
dan peralatan perekam digital genggam diperkenalkan kepada subjek sebelum
dinyalakan.
Analisis data dilakukan dengan tahapan sebagai berikut;
a) Awalnya transkrip dibaca untuk makna; yang melibatkan membaca transkrip
tunggal beberapa kali terlepas dari yang lain untuk meningkatkan keterlibatan
dengan teks dan sejauh mungkin melangkah ke sepatu subjek (Smith &
Eatough, 2006).
b) Hasil tahap awal kemudian diringkas ke dalam kategori yang lebih interpretatif,
di mana deduksi dibuat mengenai apa arti subjek membuat pengalaman mereka;
tetap dekat dengan teks untuk memastikan interpretasi tetap didasarkan pada
kata-kata subjek (Smith & Eatough, 2006).
c) Kategori interpretatif ini kemudian diubah menjadi “tema yang muncul”, yang
berfungsi untuk menarik pola makna dari transkrip; dengan fokus pada apa yang
dirasakan tentang apa yang dikatakan partisipan.
d) Tahap akhir analisis melibatkan perbandingan dan integrasi tema untuk semua
subjek.
e) Tema superordinat kemudian diperiksa terhadap transkrip untuk memastikan
bahwa kekayaan setiap akun tidak hilang melalui integrasi tema.
c. Hasil
Terdapat empat tema superordinat yang muncul pada penelitian ini dengan masing-
masing sub-temanya, yakni sebagai berikut.
a) Perubahan dinamika keluarga
Subjek menceritakan bagaimana struktur keluarga dan kehidupan mereka
berubah secara signifikan sebagai akibat dari penyakit orang tua mereka. Hubungan
mereka dengan kedua orang tua mengalami perubahan yang transformasional serta
terdapat renegosiasi peran dan tanggung jawab. Perubahan pola komunikasi juga
tampak dalam mengelola informasi yang menyulitkan atau menjengkelkan. Mereka
memiliki kesadaran dan keterpaparan yang lebih besar terhadap penyakit orang tua
mereka dibandingkan adik-adiknya, yang juga menjadi semakin bergantung pada
mereka. Dengan demikian, mereka perlu menyesuaikan diri dengan penambahan
tanggung jawab di usia yang relatif muda.
b) Bergulat dengan masa remaja dan penyesuaian terhadap kehilangan
Semua subjek menyampaikan tentang kompleksitas yang terkait dengan
menjadi remaja di samping menjadi anak dari orang tua dengan penyakit terminal.
Oleh karena itu tampak seolah-olah menjadi remaja berdampak pada bagaimana
mereka mengalami PTI (misalnya pemahaman mereka tentang penyakit yang diderita
orang tuanya dan cara coping yang dilakukan), dan PTI berdampak pada bagaimana
mereka melalui masa remaja. Subjek menyebutkan bahwa fase ini adalah fase yang
rumit yang menambah tantangan mereka dalam menjalani masa remaja.
c) Hambatan dalam merasa mendapatkan dukungan
Subjek bercerita bahwa meskipun mereka memiliki figur pendukung tertentu,
seperti orang tua mereka yang masih hidup atau teman dekat, ada perasaan tidak
didukung dalam arti yang lebih luas oleh teman, teman sebaya, dan profesional.
Hambatan khusus untuk merasa didukung yang muncul di antaranya adalah
menemukan remaja lain yang dapat memahami dan berhubungan dengan pengalaman
mereka, persepsi stereotip sosial dan stigma dan keterbatasan layanan dukungan.
d) Hidup dengan konsekuensi
Semua subjek berbicara tentang dampak pengalaman PTI yang mereka miliki
dan terus ada dalam kehidupan mereka dan mereka menggambarkan berbagai
perjuangan atau konsekuensi dari pengalaman mereka yang mungkin tidak harus
mereka hadapi seandainya orang tua mereka tidak menjadi TI. Tema superordinat ini
menyoroti perjuangan masa lalu, sekarang dan masa depan. Ada perasaan bersalah
 dan menyesal yang muncul, kesadaran baru tentang mortalitas kehidupan yang tidak
bisa dihindari, serta proses kehilangan dan berduka yang terus berlangsung.

d. Pembahasan
Hasil dari penelitian ini menunjukkan bahwa remaja mungkin rentan untuk
mendapatkan informasi yang tidak memadai tentang PTI, terutama dalam hal persiapan
untuk tahap selanjutnya dari penyakit dan kematian itu sendiri. Namun, Miller (2008)
menunjukkan bahwa semakin banyak informasi yang diterima remaja mengenai penyakit
orang tua mereka, semakin sedikit gejala psikologis yang mungkin mereka alami. Coping
adaptif (misalnya aktif atau mencari bantuan) mungkin dapat menjadi faktor protektif
bagi remaja. Sebaliknya, merasa kewalahan setelah diagnosis TI atau pasca-berkabung
mungkin terkait dengan lebih banyak coping tidak adaptif (misalnya penggunaan obat-
obatan dan alkohol). Sifat hubungan orang tua mungkin juga berguna dieksplorasi karena
subjek yang menggambarkan perasaan kewalahan dan tidak mampu mengatasi situasi
kehilangan menggambarkan hubungan yang jauh atau konfliktual dengan orang tua
mereka yang masih hidup.

e. Kesimpulan
Remaja dengan orang tua yang memiliki penyakit terminal menjadi salah satu
kelompok berisiko yang perlu diperhatikan. Mereka merasakan perubahan dinamika
keluarga yang signifikan, bergulat dengan masa remaja dan penyesuaian terhadap
kehilangan, hambatan dalam mendapatkan dukungan, dan hidup dengan konsekuensi
dari kondisi tersebut.

2. Review Artikel
a. Kelebihan artikel
• Pengawasan/supervisi dan peer review digunakan untuk meningkatkan kredibilitas
penelitian
• Izin etika dijamin oleh panel peninjau etika universitas dan Kode Etik Penelitian
Manusia British Psychological Society (2014) ditinjau dan dipertimbangkan selama
desain dan pelaksanaan penelitian ini
 b. Kekurangan artikel
• Tidak disebutkan berapa kali proses wawancara dilakukan
• Tidak disebutkan pertanyaan penelitian yang menjadi panduan dalam pengambilan
data
• Pengambilan data secara daring sehingga pengamatan terhadap aspek non-verbal
subjek menjadi terbatas

3. Refleksi
a. Pembelajaran Metode penelitian kualitatif
Saya dapat mengenal lebih dalam tentang IPA karena artikel mencantumkan
pengertian dan tahapannya dengan cukup detail.

b. Pembelajaran Profesional
Saya menjadi lebih memahami dinamika psikologis yang dialami oleh seorang
remaja dengan kondisi orang tua yang memiliki penyakit terminal. Pemahaman ini akan
berguna ketika saya nanti bertemu dengan klien yang mengalami situasi ini. Selain itu,
penelitian dapat menjadi rekomendasi diperlukannya layanan khusus untuk
mendampingi anak-anak maupun remaja dengan PTI maupun yang orang tuanya
meninggal karena penyakit terminal.
 JURNAL III

Judul Artikel Beyond a traumatic loss: The experiences of mourning alone after
parental death during COVID-19 pandemic
Penulis Zahra Asgari , Azam Naghavi , and Mohammad Reza Abedi
Tahun Publikasi 2021
Nama Jurnal Death Studies
Edisi -

1. Isi Artikel
a. Latar Belakang
Tingginya dan meningkatnya jumlah kematian akibat COVID-19 membuat
Jackson dkk. (2020) menyebutnya sebagai “tsunami kematian” (hlm. 2). Banyak orang
di seluruh dunia kehilangan kesempatan untuk mengucapkan selamat tinggal terakhir
kepada orang yang mereka cintai karena protokol kesehatan membatasi kunjungan ke
rumah sakit. Mereka juga kehilangan kesempatan untuk menerima dukungan sosial
seperti aturan social distancing yang melarang pemakaman/pemakaman besar atau
praktik beberapa ritual (Stroebe & Schut, 2020). Pembatasan dan larangan ini dapat
memengaruhi kesejahteraan emosional orang yang berduka (Aguiar et al., 2020; Falk et
al., 2020) dari lebih dari 3 juta orang yang kehilangan nyawa akibat COVID-19 hingga
Mei 2021 (World Health Organization, 2021), termasuk kelompok remaja. Remaja
mungkin lebih rentan selama pandemi COVID-19 (de Figueiredo et al., 2021; Liu et al.,
2020) dan jika mereka kehilangan orang yang dicintai, terutama orang tua, mereka
mungkin menghadapi kesedihan yang rumit atau berkepanjangan (Falk et al. ., 2020;
Weinstock dkk., 2021).

b. Metode
Pendekatan fenomenologis deskriptif digunakan untuk memahami pengalaman
berkabung dan berkabung di antara remaja Iran yang kehilangan orang tua mereka karena
COVID-19. Kriteria subjek adalah remaja (13 hingga 18 tahun) dan terpapar kematian
orang tua yang tidak terduga karena COVID-19.
 Penelitian dilakukan di Isfahan, salah satu kota terbesar di pusat Iran. Subjek dipilih
secara purposive dan snowball sampling dari sekolah dan organisasi yang mendukung
siswa yatim piatu di Isfahan.
Wawancara semi terstruktur online dilakukan melalui video call menggunakan
program WhatsApp atau Skype dengan 8 anak perempuan dan 7 anak laki-laki (14–18
tahun) yang salah satu atau kedua orang tuanya meninggal karena COVID-19. Semua
wawancara dilakukan dalam bahasa Persia dan hanya kutipan terkait dengan makalah ini
yang diterjemahkan.
Wawancara berlangsung sekitar 60 menit dan direkam dengan persetujuan dari
para subjek. Topik yang dibahas dalam wawancara meliputi pertemuan pertama dengan
berita, emosi yang dialami, ritual pemakaman atau cara alternatif berkabung, dan rencana
masa depan. Beberapa pertanyaannya adalah “Bagaimana ini bisa terjadi?”, “Apakah
Anda bersama orang tua yang telah meninggal ketika dia meninggal?”, “Bisakah Anda
menjelaskan pikiran dan perasaan Anda ketika mendengar kabar buruk itu?”, dan
“Apakah pemakaman ritual yang dilakukan untuk orang tuamu yang sudah meninggal?”.
Wawancara dilanjutkan dengan penyelidikan dan pertanyaan eksplorasi.
Analisis terjadi bersamaan dengan pengumpulan data. Peneliti menggunakan
metode Colaizzi (1978) untuk menganalisis data dan menggunakan perangkat lunak
MAXQDA untuk mengatur analisis.
Setelah ditranskrip kata per kata dan dikodifikasi, peneliti mengkategorikan kode-
kode tersebut ke dalam subtema dan tema. Kemudian, tema ditinjau, ditentukan, dan
diberi nama. Peneliti menggunakan kriteria Lincoln dan Guba (2013) untuk memastikan
keandalan (trustworthiness) analisis. Dengan demikian, untuk memastikan kesesuaian,
penulis kedua melakukan pemeriksaan eksternal tentang kualitas kode dan tema yang
diekstraksi.
Untuk memastikan kredibilitas penelitian, peneliti menghasilkan jejak audit dan
ringkasan kode dan tema untuk semua subjek. Mereka ditanya apakah hasilnya
mencerminkan pengalaman mereka. Subjek percaya bahwa peneliti telah menangkap
esensi pemikiran mereka dan tidak memberikan saran untuk perubahan.
Persetujuan etik penelitian diberikan oleh Komite Etik Universitas Isfahan.
Pewawancara menyelesaikan setiap wawancara dengan memastikan keadaan emosi
subjek dapat diterima dan menindaklanjutinya melalui obrolan teks. Semua subjek
ditawarkan sesi konseling gratis atau dirujuk ke psikiater jika diperlukan.
c. Hasil
Terdapat dua tema utama yang ditemukan dari analisis data hasil wawancara, yaitu
“kesulitan dalam kehidupan yang hancur” dengan dua sub-tema dan “krisis dalam krisis”
dengan tiga sub-tema.

a) Kesusahan dalam kehidupan yang hancur

• Semua subjek percaya bahwa kehilangan orang tua menghancurkan hidup mereka
dan menciptakan penderitaan yang berkelanjutan.
• Bagi beberapa subjek, kehilangan orang tua adalah pertemuan pertama mereka
dengan kematian, dan ini membuat intensitas kehilangan traumatis semakin
besar. Perasaan tertekan utama mereka setelah kehilangan dan berkabung
termasuk perasaan kaget dan penyangkalan yang berkepanjangan karena
kematian yang tidak terduga, rasa bersalah yang berlebihan, kesepian, dan isolasi.
• Beberapa partisipan menyatakan bahwa mereka merasa hidup menjadi tidak
berarti setelah kehilangan orang tua. Mereka mengungkapkan kebingungan dan
berbagi pemikiran bahwa tidak ada yang penting lagi bagi mereka di dunia yang
tidak aman dan tidak stabil seperti itu.

b) Krisis dalam krisis

• Kematian orang tua yang tidak terduga menciptakan krisis dan kondisi berkabung
COVID-19 menambah lebih banyak krisis. Sebagian besar subjek menyoroti
bahwa kurangnya/rendahnya tingkat dukungan dan empati dari jejaring sosial
mereka telah mengurangi ketahanan mereka dan membuat mereka
melakukan/memikirkan perilaku berisiko seperti upaya bunuh diri atau
penyalahgunaan zat/alkohol.
• Hampir semua subjek melaporkan tingkat dukungan sosial yang rendah dari
jaringan sosial mereka karena tidak adanya upacara pemakaman, dan isolasi
sosial ini membuat peristiwa traumatis menjadi lebih sulit.
• Beberapa subjek melaporkan bahwa terlibat dalam perilaku seperti penggunaan
zat dan alkohol dan memiliki ide bunuh diri setelah kehilangan traumatis dapat
mengurangi rasa sakit mereka, meskipun perilaku ini dapat membuat mereka
menghadapi lebih banyak bahaya.
 • Sebagian besar subjek menyatakan bahwa perubahan substansial akibat pandemi
adalah transisi ke pendidikan online. Mereka menggambarkan perubahan tersebut
memiliki efek mendalam pada kinerja akademik mereka, yang diperburuk oleh
pengalaman kehilangan salah satu atau kedua orang tua secara tiba-tiba. Mereka
menceritakan efek yang tidak menguntungkan seperti kegagalan akademik,
ketidakhadiran kelas online, kurangnya komunikasi dengan teman sekelas, dan
berkurangnya keterlibatan dalam kegiatan kelas, dan kurangnya motivasi untuk
berhasil.

d. Pembahasan
Temuan menunjukkan bahwa kematian orang tua terkait COVID-19 dianggap
sebagai pengalaman traumatis bagi remaja yang berduka. Mereka harus menanggung
kehilangan yang tiba-tiba dengan tingkat stres, kesepian, dan perasaan yang mengerikan
(LeRoy et al., 2020). Seperti penelitian sebelumnya tentang kehilangan traumatis
(Johannesson et al., 2009; McGee et al., 2018), subjek merasakan tekanan yang
berkelanjutan, dan aliran emosi negatif yang kompleks seperti campuran perasaan kaget,
putus asa, marah, menyesal, dan bersalah. Perasaan tidak berarti setelah kehilangan
traumatis konsisten dengan penelitian sebelumnya yang menemukan bahwa kehilangan
traumatis dapat menunda atau mempersulit pembuatan makna dan pembentukan identitas
selama masa remaja (Hamid & Jahangir, 2020). Literatur menyoroti bahwa kesedihan
yang rumit dapat muncul ketika orang menghadapi kehilangan traumatis, berduka dalam
isolasi, dan tidak dapat mengucapkan selamat tinggal kepada almarhum (Burrell &
Selman, 2020), dan mengalami emosi negatif yang berlebihan (Li et al., 2019).

e. Kesimpulan
Pada saat krisis, anak-anak dan remaja beralih ke orang tua untuk belajar
bagaimana mengatasi situasi dan bagaimana membuat makna krisis, dan ketika kematian
terlibat, kehadiran mereka dalam ritual ritual sekitar kematian dianjurkan. Remaja yang
kehilangan orang tua selama pandemi COVID-19, menghadapi banyak kerugian:
kehilangan orang yang dicintai, kehilangan panutan untuk mengatasi dan memberi
makna atas kehilangan, kehilangan kesempatan untuk mengucapkan selamat tinggal,
hilangnya praktik ritual yang sudah dikenal, dan hilangnya dukungan sosial.
2. Review Artikel
a. Kelebihan artikel
• Terdapat metode untuk mengecek kredibilitas penelitian
• Penggunaan kriteria untuk memastikan trustworthiness penelitian
• Terdapat pengecekan oleh penulis kedua sehingga confirmability lebih terjamin
• Etika penelitian dijelaskan lebih detail

b. Kekurangan artikel
• Terdapat tantangan dalam menganalisis ekspresi wajah dan mendapatkan lebih
banyak data dengan mengamati bahasa tubuh selama wawancara yang tidak
didapatkan karena pengambilan data secara daring
• Penelitian dilakukan tidak lama setelah kematian orang tua sehingga tidak dapat
melihat dampak jangka panjang dari peristiwa berduka

3. Refleksi
a. Pembelajaran Metode penelitian kualitatif
Dengan membaca dan menelaah jurnal ini, saya mendapatkan referensi tentang
proses pencarian subjek untuk penelitian pada artikel ini karena penulisannya cukup
rinci. Selain itu, pendekatan yang digunakan dalam proses wawancara maupun analisis
data pada penelitian ini juga ditulis dengan lengkap sehingga saya mendapatkan
gambaran lebih detail tentang pelaksanaannya. Peneliti juga menjelaskan tentang cara
menjaga kredibilitas, confirmability dan trustworthiness pada penelitian yang
memperluas wawasan saya tentang pelaksanaan penelitian kualitatif.

b. Pembelajaran Profesional
Dengan membaca artikel ini, saya menjadi lebih memahami dinamika psikologis
remaja yang baru saja kehilangan orang tua karena COVID-19. Angka kematian yang
tinggi dapat menjadi indikasi bahwa layanan psikologi untuk remaja yang berduka
semakin dibutuhkan, terutama di Indonesia. Selain itu, diperlukan adanya pemutakhiran
data terkait jumlah anak-anak dan remaja yang kehilangan orang tua di masa pandemi.
Hal ini penting agar dapat situasinya lebih jelas sehingga dapat menjadi perhatian
pembuat kebijakan dalam menyusun layanan berupa pendampingan psikologis maupun
dukungan sosial yang dibutuhkan oleh para remaja tersebut.
 DAFTAR PUSTAKA

Asgari, Z., Naghavi, A., & Abedi, M. R. (2021). Beyond a traumatic loss: The experiences of
mourning alone after parental death during COVID-19 pandemic. Death Studies, 1–6.
https://doi.org/10.1080/07481187.2021.1931984
Cafferky, J., Banbury, S., & Athanasiadou-Lewis, C. (2018). Reflecting on Parental Terminal
Illness and Death During Adolescence: An Interpretative Phenomenological Analysis.
Interpersona: An International Journal on Personal Relationships, 12(2), 180–196.
https://doi.org/10.5964/ijpr.v12i2.306
Hebbani, S., & Srinivasan, K. (2016). “I take up more responsibilities for my family’s
wellbeing” − A qualitative approach to the cultural aspects of resilience seen among
young adults in Bengaluru, India. Asian Journal of Psychiatry, 22, 28–33.
https://doi.org/10.1016/j.ajp.2016.04.003
 Asian Journal of Psychiatry 22 (2016) 28–33

Contents lists available at ScienceDirect

Asian Journal of Psychiatry

journal homepage: www.elsevier.com/locate/ajp

‘‘I take up more responsibilities for my family’s wellbeing’’ A

qualitative approach to the cultural aspects of resilience seen among
young adults in Bengaluru, India
Sudharshan Hebbani *, Krishnamachari Srinivasan
Division of Mental Health, St. John’s Research Institute, Koramangala 100 ft Road, Bangalore 560034, India

A R T I C L E I N F O A B S T R A C T

Article history: Resilience refers to the pursuit of positive in the face of adversity. The present study using qualitative
Received 29 July 2015 methods aimed to identify culture-specific factors linked to resilience. Participants, (N = 31, aged 16 24
Received in revised form 7 March 2016 years) whose parents were being treated for chronic medical conditions or psychiatric disorders at St John’s
Accepted 16 April 2016
Medical College Hospital, Bengaluru, were studied using Focused group discussion and In-depth interviews.
Using the ‘Grounded theory’ approach, two major themes were identified as important factors influencing
Keywords: resilience: (1) Family and socially defined roles/responsibilities and in particular adherence to traditionally
Resilience
defined social responsibilities. (2) Participation in rituals and experiencing spirituality. Application and
Cultural aspects
Young adults
relevance of these themes in promoting resilience among young vulnerable adults are discussed.
Qualitative approach ß 2016 Elsevier B.V. All rights reserved.
India

1. Introduction important differences in the way different cultures view resilience

The concept of resilience has gained considerable research
interest with several reviews highlighting the critical role that
resilience plays in the life of individuals who continue to function
normally in the face of adversity such as deprivation, discrimina-
tion, oppression, poverty, life stressors, trauma and violence
(Agaibi & Wilson, 2005; Haskett et al., 2006; Herrman et al., 2011;
Shankaran et al., 2006).
Socio-cultural factors and ethnicity influence the way people
experience adversity (Arrington & Wilson, 2000). A constructionist
approach views resilience as ‘‘the outcome from negotiations
between individuals and their environments for the resources to
define themselves as healthy amidst conditions collectively viewed
as adverse’’ (Ungar, 2004). This approach is seen to better account for
differences in the expression of resilience by individuals, families,
and communities (Hutcheon & Wolbring, 2013). Resources involved
in resilience are embedded in the socio-cultural context. Some of
these factors such as having secure attachments and adopting non-
delinquent forms of adaptation to stress cuts across cultures while
the role of family and family structures, belief systems and customs
in promoting resilience are influenced largely by the local cultural
milieu. (Ungar, 2008). Earlier studies have highlighted some
* Corresponding author. Tel.: +91 9916628323.
E-mail address: sudharshan.hl@gmail.com (S. Hebbani).
(Ungar, 2010). In contrast to Westerners who equate resilience with
mastery over environment, Eastern cultures tend to place greater
emphasis on the acceptance of experience (Zaustra et al., 2010).
Similar parallels exist in other ethnic groups such as Indian
Americans who accept adversity as part of life and an experience
that has to be lived through (LaFromboise et al., 2006). Enculturation,
the process of learning and practicing one’s culture (Zimmerman
et al., 1998) and conformity to community norms are key processes
linked to development of resilience (Phinney et al., 1997).
Families are influenced by culture through transfer of cultural
norms to its individual members and thereby influencing their
behavior (Johnson, 1995). In this perspective, Indian families differ
from their western counterparts. Families in the west have a more
‘‘individualistic’’ orientation whereas Indian families have a more
‘‘collectivistic’’ orientation (Avasthi, 2011; Chao & Tseng, 2002;
Desai, 2007). Several studies across cultures including studies from
India have identified attachment within the family including
extended family and availability of caring and emotionally
nurturing family members as important in helping at risk members
to maintain positivity (Hall, 2007a; Hawley, 2000; Singh, 2004).
Availability of family members and the support children/adoles-
cents receive from their extended family and community act as
protective factors and help them maintain competence in the face
of adversity (Garmezy, 1991; Hall, 2007b; Kakar, 1981; Kayser
et al., 2008). Studies from India have specifically identified the
important role played by traditional social structures that have

http://dx.doi.org/10.1016/j.ajp.2016.04.003
1876-2018/ß 2016 Elsevier B.V. All rights reserved.
 S. Hebbani, K. Srinivasan / Asian Journal of Psychiatry 22 (2016) 28–33
survived over time in promoting resilience and adaptability (Singh,
1995). In addition, both religious beliefs and practices, which are
an integral component of Indian culture, are important coping
mechanisms that help individuals maintain positivity in the face of
adversity (Annalakshmi & Abeer, 2011).
The current study focuses on understanding the culture-specific
factors linked to resilience among off springs of parents with physical
and psychiatric conditions. We chose to study this population as off
springs of parents with physical and psychiatric conditions are at an
increased risk of experiencing psychological distress (McLaughlin
et al., 2012; Pakenham & Cox, 2012). The ‘‘Family Ecology
Framework’’ model explains that parental illness can affect their
off springs through individual (e.g. stress and stigma) and family (e.g.
role distribution) level mediators (Pedersen & Revenson, 2005).
Studies on children with parental illness have identified specific
impacts which include elevated distress, interpersonal difficulties,
somatisation and deficit in life satisfaction and reduced positive
affect (Pakenham & Bursnall, 2006; Yahav et al., 2005).
To identify culture-specific factors linked to resilience, qualita-
tive-based research approach is found to be efficient (Ungar &
Liebnberg, 2011). In the present study, we conducted focused
group discussion and in-depth interviews based on ethnographic
approach among the off springs of parents with physical and
psychiatric conditions, to have an understanding of their percep-
tion of resilience. This report is part of a larger study of resilience
among adolescent children of parents with problem drinking.
2. Methods
2.1. Study setting and participants
The participants were recruited from St. John’s Medical College
Hospital (SJMCH), a tertiary care hospital located in Bengaluru and
predominantly catering to an urban clientele. The participants
were off springs (aged between 16 and 24 years) of parents who
were treated for major psychiatric conditions, malignancies and
chronic medical conditions with associated physical disability.
Majority of the participants hail from lower-middle class (mean
monthly income is Rs 18741.93). The institutional ethics review
board of SJMCH approved the study.
The treating team members of the departments of psychiatry,
oncology and physical medicine and rehabilitation were consulted to
know about the details of the patients admitted. Participants were
included into the study based on the following criteria. They are: a)
participant should be aged between 16 and 24 years. b) At least one of
the parents of the participant must be diagnosed with any chronic
medical or psychiatric conditions. c) Participant must score 50 or
more on Connor Davidson’s Resilience Scale (CD-RISC). d) To
facilitate the focused group discussion and in-depth interviews,
participants must speak the languages that were known to the
researcher (i.e. English, Kannada and/or Tamil). After examining the
inclusion criteria, off springs of the patients were administered CD-
RISC to measure resilience. Out of 74 off springs whose parents had
either medical conditions or psychiatric condition, 31 participants
were eligible to take part in the study by having high score on CD-
RISC. CD-RISC score ranges from 0 to 100 and higher score indicate
higher level of resilience. Participants who obtained score of 50 or
more on CD-RISC [mean = 61.76, SD = 7.69] were invited to
participate in the study. A brochure was prepared to explain the
purpose of the study to the participants and assent was obtained
from the parents and a written informed consent from the
participants.
The interviews and focused group discussion were arranged on
the afternoons of every Saturday in the respective department’s
academic hall at SJMCH. This study was conducted from June 2013
to January 2014.
29
2.2. Study design
The focus group discussion was conducted in two vernacular
languages (i.e. Kannada and Tamil) and English, which were the
languages of choice of the participants. Each of the focus group
discussion had six to eight members of both genders and lasted for
45 min to an hour. Few participants were individually interviewed
as they could not make time for the group discussion.
2.3. Data collection
Socio-demographic details were captured using a semi-
structured questionnaire. Theme question of the focused group
discussion was introduced to the group through a series of
topics and the interviewer facilitated the discussion and the
responses. The questions were put to the group in the following
order:
2.3.1. Opening question
 ‘‘What is your understanding of a challenging situation?’’
 ‘‘What factors affect an individual to experience pressure due to a
challenging situation?’’
2.3.2. Introductory question
‘‘What helps an individual to maintain positivity despite facing
challenging situations?’’
2.3.3. Transition question
‘‘What are the factors/resources that help him/her to overcome
adversity?’’
2.3.4. Key question
Researcher’s Question — ‘‘How do you think our socio- cultural
milieu influence the ability to lead a positive life even if we are
facing stress?’’
The group discussions were recorded using a digital voice
recorder and in addition the researcher kept notes during the
discussion.
2.4. Data analysis
The audio files which were obtained from the discussion through
the digital recorders were then translated (from language of
interview to English) and transcribed (from a conversation format
to written format). The Grounded Theory approach was used in
assigning interpretive codes to each portion of the transcript in an
iterative fashion based on principles of phenomenology. Grounded
Theory is an analytical method that allows theory to emerge from
the data and seeks to build rather than test a theory.
The transcribed files were uploaded to NVivo software. This
software is used for analysing qualitative data. Based on the
interview guideline, the code book was generated through the use
of the software. Code book is a catalogue of codes which are
extracted from the data obtained. Code is a word or short phrase
that suggests how the associated data segments inform the
research objectives. Though the parent codes were the themes on
which the interview was conducted, the sub-themes were the
prominent opinions expressed by the participants.
3. Results
Number of FGD: four groups (six to eight participants in each).
Totally 16 participants
Number of individual interviews: 15 (Table 1)
30 S. Hebbani, K. Srinivasan / Asian Journal of Psychiatry 22 (2016) 28–33
Table 1
Demographic detail of the participants (n = 31).
Gender Male
Female
Age Mean
SD
Education 10thStd
12thStd
Degree
Graduate
Family Type Nuclear Family
Joint family
Domicile Urban
Rural
Monthly income Mean
3.1. Table: Duration of parental illness
 5years:
 5 10years:
 10 15years:
 15 years:
During the interpretation and analysis of the qualitative data
obtained through interviews and group discussions, following
themes emerged:
 Family, socially defined roles/responsibilities and resilience
Family exerts a significant influence on a person’s expression of
resilience by defining the roles and responsibilities prescribed by
traditional institutions like society, family, and gender.
 Rituals and spirituality – practicing religious rituals and the
belief that supernatural force resides in every one helps a person
to seek strength when confronted with a problem situation.
3.2. Family, socially defined roles/responsibilities and resilience
The one collective them e that emerged out of group discussions
and in-depth interviews was the significance given to the role of
the family (Mane). Most of the participants (n = 27) voiced the
importance that they attach to family as an institution and to
protect its status in the community. One participant said ‘‘this is
my home (family). I must take care of the family. I will be happy
when the entire family is happy. Only then I become a complete
person’’. The participant being the sole breadwinner, at the age of
16; opined that he will continue to battle with adverse life
situation. He identifies with the family to an extent that his
wellness resides in the wellness of the family. This is one of the
major motivating factors for him to maintain a healthy self despite
significant stress. As recounted by another participant
‘‘I cannot see my sister going to other’s house and ask for food.
My father hardly earns (father was being treated for BPAD with
co-morbid alcohol dependence). Mother is a vegetable vendor.
It is very difficult to maintain the family with what my mother
earns. So I decided to quit my studies. Though I feel bad for not
studying like others, I am happy that I am supporting the family.
I will support my sister for her studies. After all I am her sister’’
(23 years, female)
Almost every participant reported a structural imbalance in the
family wherein one of the family members as a consequence of his/
her medical condition was not in a position to fulfil his/her share of
responsibilities resulting in unequal distribution of roles and
responsibilities. This factor by itself could have been a potential
stressor but the participants perceived it as their duty to contribute
to the wellness of their family of origin through taking on
additional responsibilities and or setting aside personal comforts.
18
13 ‘‘When my father lost his leg in the accident, he was so afraid
19.3 about our (offspring) future. Then my mother told me not to
3 worry. She (mother) had lost her parents when she was very
10
11
young. After that she had to rebuild her life all by herself. So she
7 told me and my elder sister to be strong and help the family to
3 run. My elder sister had just completed her degree so she got a
25 job in a call centre. I was doing my class 12. Mother and sister
6
told me to continue my studies. So I did but I also realised that I
21
10 will not be able to get all the facilities that I was getting. I had to
Rs18741.93 compromise on my dress, food and many other things. To be
frank I don’t regret because I am happy that I am also helping
the home (family)’’ (17 years, female)
Participants also spoke at length about the family’s role in
15 providing strength to the individual in times of adversity. Family as a
system provides a sense of continuity and is a source of social support.
7
4 ‘‘Home/family is my strength. My mother brought me up all by
herself because I lost my father when I was in my 5th class. But
5
now she is suffering from breast cancer. Before she was ill, she
was going out for work and she was also looking after the
family. My paternal grandmother and my maternal aunt (not
married) stay with us (both were dependent on the mother).
But now she is unable to do anything. So I must take up the
responsibility. I am an artist. So I decided to quit BE
(undergraduate course in engineering) and take up painting
to earn money to support the family. Unfortunately I earn very
less. But financially we are managing. I am telling you this to
explain how I am surviving. My aunt is like my friend. I share all
my feelings with her. My grandmother is very old still she
encourages my art. They are my support’’ (23 years, male)
In India it is quite usual to see extended families like the one
mentioned above. The warmth and affection from the family
members is a great source of support and contributes to a sense of
wellness while facing adversity.
Another commonly reported theme by the participants relates
to obligated roles and responsibilities defined and imposed on an
individual by traditional social institutions like family, society,
religion etc.
‘‘I am a son. I can’t sit in my father’s shelter. I know I am too
young to take all the responsibilities of the family but I have to.
In our community we are not supposed to ask women to go and
earn. So I don’t want my mother to go out and earn. I can look
after her and my father. He was a driver and struggled so much
to look after the family. Now that he lost his legs in an accident,
we can’t ignore him. Now it’s my turn. I will earn’’. (The
participant is an 18 year old male who quit his studies at the age
of 14 and works in a garage to earn his livelihood)
The gender roles and responsibilities have a defining say in a
person’s decision. Here, the participant is justifying his necessity to
earn by pointing out to the roles and responsibilities prescribed by
the community. He believes that it’s a man’s responsibility to lead
the family. He sounds very willing to take up this role of leading the
family in the absence of his father despite his young age and the
need to give up his education.
In another instance of gender role expectations, a women
participant narrated. . .
‘‘I got married very recently. Till then I was going for a job. I lost
my father when I was very young. So my mother used to go out
and earn. When I completed my 2nd PUC, I started earning. But
my mother got cancer. So I had to do household chores. My
mother would always tell me that I am burdened with outside
 S. Hebbani, K. Srinivasan / Asian Journal of Psychiatry 22 (2016) 28–33
work and house work. But I never felt so. How can a girl feel
burdened to do household work? Going out (for work) is a
necessity and doing things at home is my duty’’ (23years, female)
In a patriarchal society like India, a woman is seen primarily as a
home maker. Her role is to take care of the family. A woman will go
out for a job but she is expected to attend to household chores too.
She doesn’t perceive taking the responsibility of household chores
while going out for a job to be stressful as she is fulfilling a
traditional role prescribed by the family and the society.
‘‘My home is in a small village near Tumkur (a district near
Bangalore). We have agricultural fields and we work in it. In our
village, many people help us in the field. We also go to their
fields when they need people. So we all know each other. When
my mother is beaten up by my father, when he is drunk, others
come and take him away. Village heads have come and advised
him not to behave like that. So I have never felt the need to get
involved in resolving the problem between them. My mother
also has some friends. She goes to them when she has any
personal problems. During festival times, we go to one of my
mother’s friend’s house. My father will sit at home and drink. So
we won’t celebrate here. When my mother goes to fields for
work, the cattle are reared by our neighbours. Everything
happens on its own’’ (21 years, female)
‘‘Everything happens on its own’’ – this statement sums up the
narration of the participant. She was explaining to the group how
closely knit people are and how prepared they are in extending
help to others in need. Adverse situation is mitigated or
specifically, the effect of father’s alcohol problem on other family
members was reduced through the intervention of the villagers. In
addition, many participants referred to the regular community
activity that takes place in the village like annual religious rituals at
local places of worships and carnivals that contributes to a sense of
togetherness. They talked about the time they spend together and
how every villager would participate in these activities, which
helps in further strengthening social network and relationship.
3.3. Rituals and spirituality
Most of the participants initiated this discussion by sharing
about practicing rituals like praying, visiting places of worship etc.
The discussion focused more on a religious practice seen in Indian
society, which is colloquially called ‘‘harake/nema’’ where a person
makes a request to his deity to fulfil his wishes through an offering
to the deity. Usually, it is some fruits or sweets or occasionally even
money. Sometimes they would also observe austerities by fasting
or regulating their food intake by giving up non-vegetarian food on
particular days to invoke the deity’s attention. Some participants
also mentioned that they would go on a pilgrimage to places of
worship to offer their prayers. These rituals are observed when
they feel things are going beyond their control. Almost every
participant agreed that this gave them strength and positive
energy to lead a normal life.
‘‘When my mother gets severe pain, I go running to the God and
offer him a coconut and will perform some puja to the god. I
don’t know if that reduces her pain, but I feel a little better when
I go to temple and pray’’ (22years, female)
‘‘Every Thursday I fast in the name of Rayaru (Rayaru is
Raghavendraswamy a 16th century saint. Many believe that he
has spiritual powers). I will just have some fruits and milk on
that day. I have been practicing this since 2years. When we
were on streets (bankrupt) no one came to our help except
Rayaru. So I observe this to seek his blessings and I feel good
after doing this’’ (24year, male)
31
‘‘We friends go on religious trips (pilgrims) to velankani church.
Mari amma will bless us when we stand in front of her and pray.
I feel energised when I go there. So at least once in six months
we all go there’’ (17year female who lost both of her parents in
an accident)
Participants believe that God is not just a supernatural force but
a friend that they can trust and enjoy a close personal relationship.
So God is a friend, counsellor and a source of support.
‘‘Krishna is my favourite God. I have a big picture of him in my
room. I always stand there and talk to him. I shout at him, I cry, I
laugh and I share everything to him. If I feel too suffocated with
my life, he helps me to relax. Once I was fed up with my parents’
fight. They were quarrelling on street. My father was drunk. I
felt embarrassed and went on the terrace. There I was talking to
Him and I was very upset. I was angry, I was feeling sad and I
was feeling too embarrassed. I was so upset that I sat on the
floor. Then a gentle breeze came as though Krishna was trying
to console me’’ (22 years, female)
‘‘I forget all my pain when I stand in front of Jesus. He listens to
my problems. I feel very good when I talk to him’’ (17year, male)
Participants also spoke at length about their perception of
adversities in life and the meaning they see in it. ‘Life is an
examination’ ‘The problems faced in life are the challenges posed
to examine an individual’s resolve’ ‘Failure teaches a person to
evolve’ were some of the common themes expressed by the
participants. Some of the participants felt that every individual has
the potential to overcome a crisis. This is possible because God (as
energy) resides in everyone.
‘‘We are manifestations of a small part of God’s power. So God
resides in us. We end up in problem because of the mistakes
that we have done. But we also have solution within us. We
must work to realize this and get liberated’’ (20years, male)
4. Discussion
This qualitative study highlights the role of family, extended
kinship, community and religious practices in fostering resilience in
vulnerable youth (off springs of parents who were treated for
chronic medical/psychiatric conditions). Among these, the role of
family and its relationship with individual members, maintaining
family cohesion in times of adversity, societal obligations and
responsibilities and connectedness with the larger community
especially in rural India and religious beliefs and rituals were
identified by participants as major contributing factors to resilience.
A recurrent theme that emerged from focus group discussions
and in-depth interviews was the mutual relationship between
family and individual. Interdependence of family members for
biological, psychological, social and/or economical needs is the
hallmark of ‘‘collectivism’’. Studies have shown that in collectivis-
tic cultures focus is on maintaining family cohesion, cooperation
and solidarity (Desai, 2007; Skillman, 2000). In the present study,
participants repeatedly referred to giving up comforts or taking on
additional responsibilities to compensate for another family
member’s inability to fulfill his/her obligations to the family. A
23 year old female participant said that she had to quit her studies
to look after the family as they lost their parents in an accident.
While dropping out from formal education is considered as a
negative outcome across several communities, in another setting it
may have positive connotation (Dei et al., 1997). A 17 year old
student said that he had to compromise on his basic requirements
like dress, food and so on to keep the family running by reducing
his consumption and thereby saving resources. These narratives,
32 S. Hebbani, K. Srinivasan / Asian Journal of Psychiatry 22 (2016) 28–33
embedded in the collectivist orientation of Indian family, stresses
the importance of maintaining family cohesiveness and together-
ness and, in turn, provide strength and solace to individuals in
times of adversity. In addition, it has been argued that the Indian
families stay strong, resilient and enduring due to adherence to
culturally driven traditions such as participation in religious
ceremonies and rituals, community fairs and festivals that help
build strong social support networks both within and outside the
family (Chekki, 1996; Shangle, 1995). This applies particularly to
rural India where kinship and connectedness extends beyond the
boundaries of the family to neighbourhood and community and
several of our participants referred to the close knit social structure
in a village community where help and support is provided
without even asking [‘Everything happens on its own’]. This close
knit social structure through its shared duties and responsibilities
helps individuals cope with adversities and maintain psychological
well being (Pillai et al., 2008; Timimi, 2005).
Several participants highlighted the importance of religion and
participation in religious festivals and rituals playing a facilitating
role in maintaining mastery and competence in times of crisis.
Different facets of strong affiliation to religious practices have
been identified as influencing psychological well-being. Identifi-
cation with and pride in participation in traditional ceremonies
and religious practices associated with one’s ethnic groups has
been linked to increased competence, academic achievement, and
self-esteem (Beauvais, 2000; Martinez & Dukes, 1997; Phinney
et al., 2001). In the present study, participants spoke of their
participation in cultural practices and religious customs which
includes praying, fasting, observing austerities and going on a
pilgrimage that helped them to maintain competence in the face
of adversity. In addition, participating in rituals can influence
psychological wellbeing (Idler, 2008). Recent research suggests
that rituals tend to promote self- control and goal-oriented
behavior thereby facilitating problem-solving strategies (McCul-
lough & Willoughby, 2009). It has also been suggested that
believers have a personal, proximate and profound attachment
with God (Kirkpatrick, 2005; Lee et al., 2012). Such attachment is
said to be enduring, reliable and helps provide psychological
support at time of crisis (Granqvist, 2010). Thus God is perceived
as a friend and a counsellor (‘‘I forget all my pain when I stand in
front of Jesus. He listens to my problems. I feel very good when I
talk to him’’).
5. Conclusion
The present qualitative study based on focus group discus-
sions and in-depth interviews among young adult children of
parents with chronic physical and psychiatric conditions
identified several factors that the participants felt were
important for promoting resilience. The two major themes that
emerged included: 1. Family, socially defined roles/responsibil-
ities and resilience Family exerts a significant influence on a
person’s expression of resilience by defining the roles and
responsibilities prescribed by traditional institutions like socie-
ty, family, and gender. Support system within the family and
community enhances resilience. 2. Rituals and spirituality –
practicing and participating in rituals and the belief that the
supernatural force resides in every one helps a person to seek
strength while facing challenging situations.
Several studies have indicated that long-term prognosis for
children growing up in adverse circumstances brought on by
parental medical/psychiatric illness is uncertain. However, factors
linked to the traditional family system in India that provide
emotional nurturance and connectedness and having strong
religious ties can be incorporated into community models of
intervention to promote resilience among high risk children.
Conflict of interest
There is no conflict of interest.
References
Agaibi, C.E., Wilson, J.P., 2005. Trauma, PTSD, and resilience: a review of the
literature. Trauma Violence Abuse 6 (3), 195–216.
Annalakshmi, N., Abeer, M., 2011. Islamic worldview, religious personality and
resilience among Muslim adolescent students in India. Europe’s J. Psychol. 7 (4),
716–738.
Arrington, E.G., Wilson, M.N., 2000. A re-examination of risk and resilience during
adolescence: incorporating culture and diversity. J. Child Fam. Stud. 9 (2), 221–230.
Avasthi, A., 2011. Indianizing psychiatry: is there a case enough? Indian J Psychiat.
53, 111–120.
Beauvais, F., 2000. Indian adolescence: opportunity and challenge. In: Montmeyer,
R., Adams, G., Gullotta, T. (Eds.), Adolescent diversity in ethnic, economic, and
cultural contexts. Sage, Thousand Oaks, CA, pp. 110–140.
Chao, R., Tseng, V., 2002. Parenting of Asians: Handbook of Parenting. In: Bornstein,
M., H. (eds.), Social Conditions and Applied Parenting. pp. 64 Retrieved from
http://books.google.co.in/books?hl=enandlr=andid=nfP9dKYn73cCandoi=fn-
dandpg=PA59anddq=traditional+roles+and+responsibilities+in+indiaandots=
lQqIukjzMkandsig=liMLQK0wMUKJ70EyCEdRiUd8Kpw#v=onepageandq=tra-
ditional%20roles%20and%20responsibilities%20in%20indiaandf=false.
Chekki, D.A., 1996. Family values and family change. J. Comp. Fam. Stud. 27 (2),
409–411.
Dei, G.J.S., Mazzuca, J., McIssac, E., Zine, J., 1997. Reconstructing drop out: a critical
ethnography of black students’ disengagement from school. University of
Toronto press, Toronto, Canada.
Desai, J., 2007. Intergenerational conflict within Asian American families: the role of
acculturation, ethnic identity, individualism, and collectivism. Diss. Abstr. Int.
67, 7369.
Garmezy, N., 1991. Resilience and vulnerability to adverse developmental out-
comes associated with poverty. Am. Behav. Sci. 34, 416–430.
Granqvist, P., 2010. Religion as attachment: the Godin award lecture. Arch. Psychol.
Relig. 32, 5–24.
Hall, J.C., 2007a. An exploratory study of differences in self-esteem, kinship social
support and coping responses among black ACOAs and non-ACOAs. J. Am. Coll.
Health 56, 49–54.
Hall, J.C., 2007b. Kinship ties: attachment relationships that promote resilience in
African American adult children of alcoholics. Adv. Soc. Work 8, 130–140.
Haskett, M.E., Nears, K., Ward, C.S., McPherson, A.V., 2006. Diversity in adjustment
of maltreated children: factors associated with resilient functioning. Clin.
Psychol. Rev. 26 (6), 796–812.
Hawley, D.R., 2000. Clinical implications for family resilience. Am. J. Fam. Therapy
28, 101–116.
Herrman, H., Stewart, D.E., Diaz-Granados, N., Berger, E.L., Jackson, B., Yean, T., 2011.
What is resilience? Can. J. Psych. 56 (5), 258.
Hutcheon, E., Wolbring, G., 2013. Deconstructing the resilience concept using an
ableism lens: implications for people with diverse abilities. Dialnet 11, 235–252.
Idler, E., 2008. The psychological and physical benefits of spiritual/religious prac-
tices, spirituality in higher education. Newsletter 4, 2.
Johnson, A.C., 1995. Resiliency mechanisms in culturally diverse families. Fam. J. 3,
316–324.
Kakar, S., 1981. The inner world: psychoanalytic study of childhood and society in
India. Oxford University Press, Bombay.
Kayser, K., Wind, L., Shankar, R.A., 2008. Disaster relief within a collectivistic
context: Supporting resilience after the tsunami in South India. J. Soc. Serv.
Res. 34 (3), 87–98.
Kirkpatrick, L.A., 2005. Attachment, evolution, and the psychology of religion.
Guilford, New York.
LaFromboise, T.D., Hoyt, D.R., Olivet, L., Whitbeck, L.B., 2006. Family, community,
and school influences on resilience among American Indian adolescents in the
upper midwest. J. Commun. Psychol. 34 (2), 193–209.
Lee, T.Y., Cheung, C.K., Kwong, W.M., 2012. Resilience as a positive youth develop-
ment construct: a conceptual review. Sci. World J., Retrieved from http://
www.tswj.com/2012/390450/
Martinez, R.O., Dukes, R.L., 1997. The effects of ethnic identity, ethnicity, and gender
on adolescent well-being. J. Youth Adolescence 26, 503–516.
McCullough, M.E., Willoughby, B.L.B., 2009. Religion, self-regulation, and self-
control: associations, explanations, and implications. Psychol. Bull. 135 (1),
69–93.
McLaughlin, K.A., Gadermann, A.M., Hwang, I., Sampson, N.A., Al-Hamzawi, A.,
Andrade, L.H., Angermeyer, M.C., Benjet, C., Bromet, E.J., Bruffaerts, R., Cal-
das-de-Almeida, j.M., Girolamo, G., Graaf, R., Florescu, S., Gureje, O., Haro, J.M.,
Hinkov, H.R., Horiguchi, I., Hu, C., Karam, A.N., Kovess-Masfety, V., Lee, S.,
Murphy, S.D., Nizamie, S.H., Posada-Villa, J., Williams, D.R., Kessler, R.C.,
2012. Parent psychopathology and offspring mental disorders: results. BJP
200, 290–299.
Pakenham, K.I., Bursnall, S., 2006. Relations between social support, appraisal and
coping and both positive and negative outcomes for children of a parent with
multiple sclerosis and comparisons with children of healthy parents. Clin.
Rehabil. 20, 709–723.
 S. Hebbani, K. Srinivasan / Asian Journal of Psychiatry 22 (2016) 28–33
Pakenham, K.I., Cox, S., 2012. Test of a model of the effects of parental illness on
youth and family functioning. Health Psychology [7_TD$IF]31 (5), 580–590.
Pedersen, S., Revenson, T.A., 2005. Parental illness, family functioning, and adoles-
cent wellbeing: A family ecology framework to guide research. J. Fam. Psychol.
19 (3), 404–409.
Phinney, J.S., Cantu, C.L., Kurtz, D.A., 1997. Ethnic and American identity as pre-
dictors of self-esteem among African American, Latino, and White adolescents.
J. Youth Adolescence 26, 165–185.
Phinney, J.S., Horenzyck, G., Libekind, K., Vedder, P., 2001. Ethnic identity,
immigration and wellbeing: an interactional perspective. J. Soc. Issues 57
(3), 493–510.
Pillai, A., Patel, V., Cardozo, P., Goodman, P., Weiss, H.A., Andrew, G., 2008. Non-
traditional lifestyles and prevalence of mental disorders in adolescents in Goa,
India. BJP 192, 45–51.
Sankaran, L., Muralidhar, D., Benagal, V., 2006. Strengthening resilience within
families in addiction treatment. http://www.strengthbasedstrategies.com/
PAPERS/17%20Lakshmi%20Sankaran.pdf.
Shangle, S., 1995. A view into the family and social life in India. Fam. Perspect. 29,
423–446.
Singh, Y., 1995. The significance of culture in the understanding of social change in
contemporary India. Soc. Bull. 44 (1), 1–9, Retrieved from http://www.jstor.org/
stable/23619612.
Singh, J.P., 2004. The contemporary Indian family. In: Adams, B.N., Trost, J. (Eds.),
Handbook of world families. California, Sage Publications Inc[3_TD$IF]..
33
Skillman, G., 2000. Intergenerational conflict within the family context: a compar-
ative analysis of collectivism and individualism within Vietnamese, filipino, and
caucasian families. Diss. Abstr. Int. 60, 4910.
Timimi, S., 2005. Effect of globalization on children’s mental health. Brit. Med. J.
331, 37.
Ungar, M., 2004. A constructionist discourse on resilience: multiple contexts,
multiple realities among at-risk children and youth. Youth Soc. 35 (3), 341–365.
Ungar, M., 2008. Resilience across cultures. Brit. J. Soc. Work 38 (2), 218–235.
Ungar, M., 2010. Cultural dimensions of resilience among adults. In: Reich, A.J.,
Zautra, J.S., Hall, J.S. (Eds.), Handbook of adult resilience. Guilford Press, New
York, pp. 404–423.
Ungar, M., Liebnberg, L., 2011. Assessing resilience across cultures using mixed
methods: Construction of the child and youth resilience measure. J. Mixed
Methods Res. 5, 126–149.
Yahav, R., Vosburgh, J., Miller, A., 2005. Emotional responses of children and
adolescents to parents with multiple sclerosis. Mult. Scler. 11, 464–468.
Zaustra, A.J., Hall, J.S., Murray, K.E., 2010. Resilience: a new definition of health for
people and communities. In: Reich, J.W., Zautra, A.J., Hall, J.S. (Eds.), Handbook
of adult resilience. Guilford Press, New York, pp. 3–29.
Zimmerman, M.A., Ramirez, J., Washienko, K.M., Walter, B., Dyer, S., 1998. Encul-
turation hypothesis: exploring direct and protective effects among Native
American youth. In: McCubin, H.I., Thompson, E.A., Thompson, A.I., Fromer,
J.E. (Eds.), Resiliency in native American and immigrant families. Sage, Thou-
sand Oaks, CA, pp. 199–220.
 Interpersona | An International Journal on Personal Relationships
interpersona.psychopen.eu | 1981-6472

Articles

Reflecting on Parental Terminal Illness and Death During Adolescence:

An Interpretative Phenomenological Analysis

Jennifer Cafferky a, Samantha Banbury* a, Catherine Athanasiadou-Lewis a

[a] School of Psychology, London Metropolitan University, London, UK.

Abstract
There has been little consideration of how adolescents experience parental terminal illness (PTI) and death and any continuing impact it
may have on their lives. In particular, limited attention has been given to this group’s perceptions and experiences of support during this
period. This study explores the retrospective experiences of six individuals who had a parent diagnosed with a terminal illness (TI) during
late adolescence. Their experiences are qualitatively explored in terms of their understanding, processing and adjustment to their parent’s
TI and death; both as an individual, and in the context of their wider family and social setting. Interpretative Phenomenological Analysis was
employed to analyse participant data. Participants were individuals who had a parent diagnosed with a terminal illness aged 16-18. Four
superordinate themes emerged from the data. These were: changing family dynamics, grappling with adolescence and adjustment to loss,
barriers to feeling/being supported and living with the consequences. Participants relate the profound impact that PTI during adolescence
has had and continues to have on their lives. Study findings provide clinically useful information for healthcare professionals working with
bereaved young people and those presently experiencing PTI. Implications are discussed in terms of service provision and design,
including therapeutic recommendations for counselling psychologists and other professionals working with this group.

Keywords: parental terminal illness, bereavement, adolescence, counselling psychology, interpretative phenomenological analysis

Interpersona, 2018, Vol. 12(2), 180–196, doi:10.5964/ijpr.v12i2.306

Received: 2018-04-17. Accepted: 2018-10-25. Published (VoR): 2018-12-21.
*Corresponding author at: School of Psychology, 166-220 Holloway Road, London N7 8DB, UK. E-mail: s.banbury1@londonmet.ac.uk
This is an open access article distributed under the terms of the Creative Commons Attribution License (https://
creativecommons.org/licenses/by/3.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the
original work is properly cited.

Approximately 41,000 young people, under the age of 18, are bereaved of a parent each year within the U.K.
(Childhood Bereavement Network, 2014; Winston’s Wish, 2016), and a significant number of these deaths will
have been preceded by a period of serious illness. When illness becomes incurable/terminal, it can present sig-
nificant stressors for family members; particularly young people (Thastum, Johansen, Gubba, Olesen, &
Romer, 2008). However young people’s experiences of parental terminal illness (PTI) have received limited at-
tention in the literature and research (Christ & Christ, 2006; Phillips, 2014).

Adolescents, in particular, are considered to be the most susceptible to negative psychosocial outcomes when
a parent is unwell (Grabiak, Bender, & Puskar, 2007) and it has been suggested that PTI may hinder normative
developmental processes and lead to long-term psychological consequences for this group (Ohannessian,
2007; Visser, Huizinga, van der Graaf, Hoekstra, & Hoekstra-Weebers, 2004). Yet, adolescents, as a distinct
group, have historically been neglected in bereavement literature and research, and there may be fewer resour-
ces available to them (Dunning, 2006). It has also been reported that only a minority of adolescents with mental
Cafferky, Banbury, & Athanasiadou-Lewis 181

health problems access treatment (Reardon et al., 2017), however the reasons for this are not well understood.
Thus, whilst bereaved adolescents, and those with terminally ill (TI) parents may present a vulnerable group,
they may also be difficult to engage and subsequently support (Bremner, 2000).

Developmentally, adolescence is a time of significant personal and social transitions and when a parent be-
comes unwell, these processes of change and growth may be side-lined; posing a threat to normal develop-
ment (Ohannessian, 2007). In addition, adolescents may have more advanced cognitive and empathetic ca-
pacities than younger children; making them more aware of present and future losses as well as being more
attuned to their loved one’s physical and emotional pain (Kristjanson, Chalmers, & Woodgate, 2004).

It has also been frequently reported that adolescents may assume additional responsibilities within their family
following a parent’s terminal diagnosis (e.g. Christ, Siegel, & Sperber, 1994; Jantzer et al., 2013) and in
Melcher, Sandell, and Henriksson’s (2015) qualitative study, adolescents were depicted as being a “primary re-
source” for parents during this period (Melcher et al., 2015, p. 4). Ten teenagers (aged 14 to 19) were inter-
viewed as part of the study, exploring how teenagers adapt to responsibility when a parent is dying, and partici-
pants described feeling responsible for their parents, siblings and everyday family life (Melcher et al., 2015).

Whilst the participants in Melcher et al.’s (2015) study spoke about their role in providing support, they also ex-
pressed a need for it, and parents were identified as a primary source of such support. However, friends, peers,
teachers and professionals may also offer support for adolescents during this period, and seeking support has
been associated with higher self-esteem, less behavioural problems and fewer symptoms associated with de-
pression (Lawrence, 1996). Yet, there may be particular barriers to adolescents gaining sufficient support. For
example, Christ et al. (1994) suggest that adolescents would prefer to speak to someone who has a shared
experience, however this may prove more difficult amongst adolescents, who typically have less experience
with illness and bereavement than adults. Moreover, according to Thompson and Payne (2000) young people
may feel different to their peers and experience an increased level of teasing at school and McCarthy (2006)
similarly suggests that parental bereavement may create a perceived point of difference between adolescents
and their peers; fostering a sense of isolation and stigma (McCarthy, 2006).

Despite such findings, there appears to be a dearth of research exploring how these young people perceive
supportive services and how they may go about asking for and accessing additional support. Such research
may hold significant value as Malone (2016) contends that adolescents may be a group particularly reluctant to
ask for help. Moreover, Rolls and Payne (2007) assert that children and young people are not a homogenous
group and thus understanding how they can be best supported through bereavement is a challenging undertak-
ing. It is subsequently important that Psychologists and practitioners from health, education and social care,
who have a significant role in providing support for young people and their families, seek to fully understand the
complex and continuing challenges they may face as well as what types of support may be of benefit.

In light of the literature and research reviewed, this study aims to investigate how individuals, who experienced
PTI and bereavement during adolescence reflect and make sense of their experiences; with additional consid-
eration given to their perceptions and experiences of support during this period. As such, this retrospective
study, aims to provide relevant information that may inform policy, service provision and clinical practice.

Interpersona
2018, Vol. 12(2), 180–196
doi:10.5964/ijpr.v12i2.306
Reflecting on Parental Terminal Illness and Death During Adolescence 182

Method

Design
A qualitative approach was adopted, as it aligned with the aims and objectives of the study. Qualitative re-
search tends to focus on meaning, particularly how people understand and make sense of the world and give
meaning to their experiences (Willig, 2008). As such, qualitative researchers aim to bring understanding to what
it may be like to live through particular events or situations. This was particularly relevant to the aims and objec-
tives of the current study; whereby a further understanding of what it may be like to live through PTI and be-
reavement during adolescence was sought.

The researcher specifically employed Interpretative Phenomenological Analysis (IPA) as outlined by Smith,
Flowers, and Larkin (2009). IPA stems from the hermeneutic tradition, to create an idiographic and inductive
approach, which aims to explore individual’s personal lived experiences; with due focus on the individual’s per-
ceptions or sense-making process (Finlay, 2009). The hermeneutic underpinning in IPA is reflected in the re-
searcher’s engagement in the understanding and interpreting of the participant’s experiences (Smith et al.,
2009). As the researcher cannot directly access the participants’ experiences, they must try to make sense of
the participants’ experiences, whilst the participant is trying to make sense of their own experiences, creating a
double hermeneutic (Smith & Osborn, 2008).

In line with the chosen approach, semi-structured interviews were conducted with six participants and inter-
views were audio-recorded, transcribed and subsequently analysed (Smith et al., 2009).

Participants
Participants were required to have had a parent who received a formal diagnosis of a TI whilst aged 16-18
years. Given the retrospective design and the reflective nature of the data sought, only adults (i.e. over 18
years of age) were included in the study. Participants were six individuals, five female and one male, all of
whom were Caucasian British and spoke fluent English as their primary language (see Table 1).

Procedure
Ethics clearance was secured by a university’s ethics review panel and The British Psychological Society’s
(2014) Code of Human Research Ethics was reviewed and considered during the design and execution of this
study. Participants’ were recruited by posting a recruitment advertisement on internet groups and forums and
social networking sites. Contact was made with potential participants via telephone and permission was subse-
quently granted to send the study information pack via post; which included a copy of the recruitment poster, a
detailed information sheet, consent and de-brief forms and a stamped return envelope.

The semi-structured interviews were conducted via telephone over 40 to 60 minutes and the hand-held digital
recording equipment was introduced to the participant before being switched on. Participants were reminded
that they had the right to withdraw from the study at any time prior to or during the interview, without providing a
reason, and at the end of the interview, participants were provided verbally with debriefing information.

Interpersona
2018, Vol. 12(2), 180–196
doi:10.5964/ijpr.v12i2.306
Cafferky, Banbury, & Athanasiadou-Lewis 183

Table 1
Demographic Information for the Six Participants

Characteristic N

Nationality
British 6
Gender
Male 1
Female 5
Parent diagnosed
Father 3
Mother 3
Current age
24-25 3
26-27 1
28-29 2
Age at TD
16 2
17 1
18 3
Geographical location
North East 2
North West 3
South West 1
Note. Age at TD = Participant’s age at the time of pa-
rent’s Terminal Diagnosis; N = Number of participants.

Data Analysis
Initially the transcripts were read for meaning; which involved reading a singular transcript several times inde-
pendent of the others to enhance engagement with the text and to insofar as possible step into the participants
shoes (Smith & Eatough, 2006). Initial noting encompassed outlining preliminary ideas, thoughts, and anything
that appeared interesting or significant (Smith et al., 2009). These were then condensed into more interpreta-
tive categories, where deductions were made regarding what sense the participant was making of their experi-
ence; staying close to the text so as to ensure interpretations remained grounded in the participants words
(Smith & Eatough, 2006). These interpretative categories were then transformed into “emergent themes”, which
served to draw out patterns of meaning from the transcript; with a focus on what was felt about what the partici-
pant was saying. As IPA is acutely “idiographic” each transcript was examined independently, allowing each
case to be analysed in its own terms (Smith et al., 2009). The final stage of analysis involved the comparison
and integration of themes for all participants. The superordinate themes were then checked against the tran-
scripts to ensure that the richness of each account had not been lost through the integration of themes.

Supervision and peer review were used to promote the credibility of the research (Smith & Osborn, 2008) and
lent to further developing and substantiating ideas and themes. Additionally, from a social constructionist per-
spective, as realities are perceived as being co-constructed, the integration of multiple perspectives may be
seen to lead to a deeper and richer understanding of a phenomenon (Smith et al., 2009).

Interpersona
2018, Vol. 12(2), 180–196
doi:10.5964/ijpr.v12i2.306
Reflecting on Parental Terminal Illness and Death During Adolescence 184

Results

Super-Ordinate Theme: Changing Family Dynamics

Participants related how, as a consequence of their parent’s illness, their family structure and life significantly
changed. Relationships with both parents were depicted as being transformed and a renegotiation of roles and
responsibilities was also presented. A change in family communication patterns was also outlined; particularly
in navigating difficult and upsetting information. As adolescents, these elements proved distinctly challenging.
The participants had greater awareness of and exposure to their parent’s illness than younger siblings and
were also increasingly depended on. Thus, a struggle is presented in attempting to adjust to premature levels
of responsibility, and more broadly in attempting to adjust to their family being irrevocably altered.

Changed Beyond Recognition

Witnessing a parent’s worsening condition created confusion, anxiety and distress for the participants who de-
pict their parents as being changed beyond recognition. Participant 1 expressed the emotional and psychologi-
cal impact of these changes.

Participant 1: “He wasn’t really himself at the end. He’d, he’d completely wasted away to a skeleton […]
erm because of his liver problems he was yellow, he didn’t have any control over his bodily functions,
he couldn’t speak, he couldn’t really see properly […] but […] it was all very […] traumatic to be there
and to see him like that” (1.10.153-154)

The participant’s statement that “he wasn’t really himself” reflects a sense of her father being lost. The descrip-
tion of his condition demonstrates how distressing it was to witness, and it may be that presenting her father as
not being “himself” helps her to cope.

The physical and dispositional changes caused by illness alter the participants’ relationship with their parent.
The illness appears to have stopped the parent being a source of comfort and security. Rather, participants ap-
peared to attempt to separate their parent from their illness as a way of making sense of upsetting physical and
dispositional changes. There is a sense of the parent being lost and grieved for prior to bereavement.

Strengthened Relationships With Surviving Parent

Most participants spoke about how their relationship evolved with their surviving parent; particularly over the
months and years following bereavement. They referred to finding new ways of relating to each other and es-
tablishing a deeper connection. Participant 4 reflects on her relationship with her father.

Participant 4: “um […] me and dad, um, we […] we get on with each other, um, a lot more now. We
actually have conversations with, with each other. He’s trying to make amends big style.”
(4.21.334-335)

For participant 4, being able to communicate more effectively with her father is prized. Her expression of “we
actually have conversations” alludes to an uncommunicative and unconnected prior relationship which has and
continues to evolve.

Interpersona
2018, Vol. 12(2), 180–196
doi:10.5964/ijpr.v12i2.306
Cafferky, Banbury, & Athanasiadou-Lewis 185

New Roles and Responsibilities

Participants shared similar experiences of adopting new roles and responsibilities within their family following
their parent’s diagnosis.

Participant 2: “I just tried to be a little bit more […] mature about things and I just tried to help out more
with the baby […] I don’t know, I just tried […] I think our relationship changed in the way we worked
together. We became more like on a level than you know, mother-daughter […]” (2.25.421-422)

Participant 2 takes on a greater level of responsibility within her family and helping her parents to look after her
younger siblings creates a levelling of roles.

Participant 1 reflects on the difficulty associated with taking on more responsibility.

Participant 1: “I was very much trapped between being an adult in a situation and being a child”
(1.25.427-428)

She describes not just being in between childhood and adulthood but feeling “trapped”; which may also reflect
the nature of the TI.

The participants describe their new and acute sense of responsibility as being necessary and appropriate, and
a strong sense of resilience is apparent. However, there is also a clear struggle to adjust and to adopt to re-
sponsibilities prematurely.

Protecting Each Other

The word “protect” or the insinuation of protecting each other was present within most participant narratives. It
was frequently used within the context of communication within the family; particularly how distressing informa-
tion was shared. The concept of protecting each other was not just described in terms of parents protecting
their children but was also explored in terms of siblings holding back emotive information from each other and
children attempting to protect their parents.

Participant 1: “I think there were a lot of things when you’re a teenager and you go through something,
whether it’s illness or you know, anything that’s going on in your parent’s lives, they don’t always tell
you the full truth because they’re trying to protect you” (1.12.189-190)

For participant 1, looking back on her experiences as an adult seemingly provides an additional layer of insight.
The use of “full truth” alludes to an “incomplete truth” that she may have been told. Yet, she does not use lan-
guage with negative connotations such as lie or conceal, and there is therefore a sense of understanding that
her parents were trying to protect her.

Super-Ordinate Theme: Grappling With Adolescence and Adjustment to Loss

All participants spoke about the complexities associated with being an adolescent alongside being the child of a
TI parent. It therefore appeared as though being an adolescent, impacted how they experienced PTI (e.g. un-
derstanding and coping), and PTI impacted how they experienced adolescence. Subsequently, there seemed
to be a complex interplay between how they simultaneously negotiated these challenges.

Interpersona
2018, Vol. 12(2), 180–196
doi:10.5964/ijpr.v12i2.306
Reflecting on Parental Terminal Illness and Death During Adolescence 186

Struggling/Not Wanting to Understand

Participants reflected on difficulties in understanding and fully comprehending their parent’s terminal illness; re-
flecting on how their understanding at the time, as adolescents, was in some ways limited.

Participant 4: “Um […] a, again at this point, I didn’t, I didn’t know what a hospice was, I didn’t know
that it, was for terminally ill, uh, people.” (4.5.56-57)

Participant 5: “[…] um, and I didn’t really know what the word meant, I didn’t know what the implications
were […]” (5.5.60-61)

There is an emphasis on not knowing and for the majority of participants, their age and lack of prior experience
seemingly hindered a complete understanding PTI and its consequences. It was also apparent that information
provided was sometimes inaccessible.

Finding a Means of Coping

Participants spoke about coping or trying to cope during their parent’s TI. Most of the participants appeared to
derive some comfort from the stability and familiarity of the everyday routine, as they attempted to “carry on”.
Yet, for two participants, the gravity of their parent’s illness and their new circumstances meant it was almost
inconceivable for life to continue as normal.

Participant 1: “I always thought the best thing to do was to, you know, be strong and to try and carry on
as normal […]” (1.10.159-160)

Participant 6: “In the […] that moment then it was like well this is a necessity. It needs to be done. Just
do it”.

Continuing life as normal may provide a degree of certainty and controllability which has been taken away by
TI. However, there is also an association between strength and carrying on, and there may subsequently be a
perception of difficulty and distress as denoting weakness.

Participant 4 offers a contrast.

Participant 4: “I sort of went off the rails and started taking a lot of drugs.” (4.23.371-372)

The participants who turned towards drugs and alcohol, appeared to want to escape from their inescapable sit-
uation; turning away from normality and perhaps attempting to enter a different reality. These participants also
reported distant or conflictual relationships with their surviving parent, and it may be that they felt a heightened
or more overwhelming sense of loss in losing their primary caregiver.

“It Was Kind of an Awkward Difficult Phase”

Participants referenced challenges associated with adolescence during their interviews, presenting their age
and experiences as being intrinsically entwined within this “awkward difficult phase”.

Participant 1: “You know I’d just turned seventeen […] so I had quite a lot going on […] I was learning
to drive, you know, I was doing my A Levels or my AS Levels […] you know all those things that are
going on when you’re that age […]” (1.8.115-118)

Interpersona
2018, Vol. 12(2), 180–196
doi:10.5964/ijpr.v12i2.306
Cafferky, Banbury, & Athanasiadou-Lewis 187

Presenting some of the milestones of adolescence serves to highlight the complexity of this period and creates
a sense of being overwhelmed. PTI is not presented as a separate challenge but rather being added to the
perplexity of the adolescent experience. Participants also expressed finding it difficult to understand or articu-
late what or how they were feeling during this complicated period.

Super-Ordinate Theme: Barriers to Feeling Supported

Whilst participants reported having particular supportive figures, such as their surviving parent or a close friend,
there was a sense of not feeling supported in a wider sense by friends, peers and professionals. Particular bar-
riers to feeling supported were presented, which included: Finding other adolescents who could understand and
relate to their experiences, perceptions of social stereotypes and stigma and limitations of support services.

“No-One my Age Really Knows What to Do”

Participants reported that other adolescents struggled to understand and relate to their experiences, and sub-
sequently to them.

Participant 1: “I think it became very divisive amongst myself and my friends […] I felt that there were
[…] my real friends and then my friends who […] couldn’t quite get their head around what had hap-
pened or […] couldn’t face talking about it.” (1.18.302-303)

For participant 1, some friends were supportive, whilst others were not and there is a sense of others being
insensitive or unknowing in how to approach the topic of her father’s illness.

In the main, adolescents appeared to find it difficult to know what to say, or how to act around the participants.
The participants appeared to want to be understood by others, and this perhaps reflects a desire for their expe-
riences and feelings to be normalized.

Stereotypes and Stigma

Participants reflected on their perceptions of stereotypes and stigma associated with their parent’s illness and
death. Whilst the death of a parent became common knowledge, the illness that preceded it was frequently
kept within the family. Thus, there is a sense that illness and death are both private and personal however they
are also presented as socially awkward and uncomfortable topics.

Participant 1: “[…] I didn’t want to be […] you know […] ah this is the one who has the dead parent sort
of thing […]” (1.20.326-327)

Participant 1 expresses concern around how she felt that she might be being perceived by her peers. She fur-
ther noted, how as an adolescent, you perhaps may not want to be seen as being different; and that points of
difference are primarily viewed as negatives. Participant 1 also describes a perceived sense of social stigma
attached to accessing counselling.

Participant 1: “[…] obviously when you’re that age […] counselling […] is […] a funny word I suppose. I
think there’s a lot of stigma attached to it. Erm […] I think […] probably not so much now that countries
like the US […] it’s quite common but I think in this country it’s almost like a sign of […] of […] weak-
ness.” (1.6.84-85)

Interpersona
2018, Vol. 12(2), 180–196
doi:10.5964/ijpr.v12i2.306
Reflecting on Parental Terminal Illness and Death During Adolescence 188

Counselling is subsequently depicted as almost something to be embarrassed by; a symbol of weakness. The
emphasis on “that age” also alludes to the specific social context of adolescence, whereby certain things are
acceptable or unacceptable.

Participant 5 similarly alludes to acceptability.

Participant 5: “I chose to decline it, partly because […] uh, partially the social environment where it says
it’s not right for a man to cry or be upset” (5.29.498-499)

Participant 5 references perceptions of social norms or constructs around gender, which may potentially have
pathologised his emotional response to significant loss. Other participants similarly discussed potential barriers
to support posed by their social and wider cultural environment.

[Counselling] “It’s a Good Concept”

Participants reported an overarching sense of support services being a “good concept” however in practice not
living up to expectations in some way. Participant 4 describes a practical limitation of the support she received.

Participant 4: “it took absolutely ages for me to get the appointment, um, but I had, I had to do it. I, I
couldn’t […]. But it was, it was really, really lengthy the time I had to wait” (4.30.472-478)

Participant 5 describes a different experience; expressing perceived constraints of time-limited therapy.

Participant 5: “the first psychologist I saw was a, a, provided by the NHS and it just felt like it was a
scenario whereby you are allocated six sessions and they wanted to have basically cured you of what-
ever ailed you […] during those six sessions […]” (5.31.532-533)

His expression alludes to the fact that it did not seemingly matter what his difficulties were. The idea of six ses-
sions is presented as constraining and perhaps he feels as though the magnitude of his experiences cannot be
constrained in this way.

Participants described seeking support from a psychologist or counsellor at some point following their parent’s
death. None of the participants received or were made aware of support available to them prior to their parent’s
death and support or information provided in or via school/college was not mentioned.

Super-Ordinate Theme: Living With the Consequences

All participants spoke about the impact that their experiences of PTI have had and continue to have on their
lives and they described a variety of struggles or consequences of their experiences that they may not have
had to contend with had their parent not become TI. This superordinate theme highlights these past, present
and future struggles.

Guilt and Regret

Most participants spoke about how they looked back on their experiences with some sense of regret; express-
ing how they could have done something or responded to something differently.

Participant 3: “I’m really embarrassed with how I dealt with the whole thing I think it was, just […] appal-
ling, I just really really ashamed of how I dealt with it […]” (3.24.409)

Interpersona
2018, Vol. 12(2), 180–196
doi:10.5964/ijpr.v12i2.306
Cafferky, Banbury, & Athanasiadou-Lewis 189

Participant 3 appears almost to be reprimanding her younger self. She states that her guilt is the most difficult
thing to deal with, and this appears similar for participant 5.

Participant 5: “Incredibly shameful, embarrassing, guilty thing, [inhales] um, but you, how do you ex-
plain to your big sister and your loved ones who are around you, helping her survive and helping you to
cope best you can, […] that you wanted her to die so that you wouldn’t have to feel pain anymore?”
(5.21.348-350)

Participant 5 doesn’t seek to understand or empathise with his younger self, and there is a sense that his
thoughts are unjustifiable or unforgiveable. In describing others as “helping her survive”, they are presented as
good and he as bad.

Feelings of guilt and regret appeared to be pervasive for the participants and they did not seem to attempt to
make sense of their thoughts or actions as those of their younger adolescent selves. It may be that their inabili-
ty to relinquish their guilt reflects an inability to forgive themselves.

New Sense of Mortality

Participants spoke about how their experiences denoted a fragility of life and a greater perceived awareness or
preoccupation with death was apparent.

Participant 2 describes ongoing concerns about people becoming ill or dying.

Participant 2: “I think in terms of the way I am with my family […] I don’t think I would be as I am now
because […] I think definitely it’s changed me in that way […] because I feel very […] I’m really, I’m like
a nervous wreck you know [laughs] especially with my little brother, I feel like though I’m I’m so over-
protective and […] I worry about everything.” (2.37.623-625)

The significance of family has perhaps been heightened by her experience of loss; amplifying how she values
and cherishes her family. Equally, a significant fear around losing other people that she loves has also been
induced.

A preoccupation with illness and death is seemingly apparent amongst other participants and it appears that
death has evolved from being perceived as an abstract concept to something that is not only possible but prob-
able.

The Ongoing Process of Loss

Participants spoke about what their parent’s illness and death meant for them at the time, and the meaning it
continues to hold for them as adults; presenting loss and grief as processes beginning around the time of diag-
nosis and continuing into their present and future lives. Most participants spent some time during the interview
reflecting on the absence of their parent in their lives.

Participant 1: “[…] and I always think […] it’s a shame he’s not around now, because there are people
in my life who […] have made me the person that I am now, or you know, like my boyfriend […] I would
have loved […] I would have loved him to meet my boyfriend and I have best friends who will never,
have never met him […]” (1.21.340-341)

Interpersona
2018, Vol. 12(2), 180–196
doi:10.5964/ijpr.v12i2.306
Reflecting on Parental Terminal Illness and Death During Adolescence 190

Participant 1 reflects on how her father will not meet her boyfriend or her new friends. Her choice of language
(“always”, “never” “ever”) seems to intensify her remarks, and her tenses fluctuate between past, present and
future which seemingly reflects the trajectory of her grief.

Participant 4: “later on, we, we started to get close again but obviously then she passed away, so […]”
(4.16.246-247)

For participant 4 there is a sense of what might have been and on what now will never be. It may be that the
participants still struggle to accept the finality of their parent’s death.

Discussion
This study aimed to explore how individuals, who had a parent diagnosed with a TI during adolescence, reflec-
ted on and made sense of their experiences and the subsequent impacts on their lives; with consideration also
given to their perceptions and experiences of support. Using an IPA approach, analysis yielded insights into
these experiences from the perspective of six individuals.

Biank and Werner-Lin (2011) assert that adolescents may be able to understand and conceptualise experien-
ces of loss in more sophisticated ways than younger children. However, findings from Melcher et al. (2015)
suggest that adolescents may struggle to understand and recognise factors specifically associated with paren-
tal illness. For example, adolescents may not anticipate various aspects of illness, such as symptoms, treat-
ment and diminishing parental capacity (Melcher et al., 2015). Aligning with these findings, results from the
present study intimate that whilst adolescents might be informed about their parent’s diagnosis, they may strug-
gle to comprehend its significance and repercussions.

Adolescents may struggle to understand aspects of PTI due to the language and terminology used. Graham &
Brookey (2008) argue that medicalised language, can be complex and inaccessible for patients, and this may
be even more the case for adolescents (Blake, Weber, & Fletcher, 2004); who have less prior knowledge and
life experience. Participants in the current study described incidents of failing to comprehend medical terminolo-
gy (e.g. Stage 4 Cancer) and contextual information (e.g. a parent moving from hospital to hospice care), and it
appeared as though the information given was not always accessible or age-appropriate.

However, it may be difficult for parents to inform and communicate with their children about PTI, particularly in
deciding which information to convey, when to present it and what language to use (Houldin & Lewis, 2006;
Turner et al., 2007). Difficulties in communicating effectively with adolescent children may further be confoun-
ded by adolescents projecting an image of independence and understanding (Malone, 2016); which may lead
to incorrect presumptions about adolescent understanding. Participants in the present study reported being
sensitive to feeling patronised by adults and appeared unlikely to ask for clarification, even when needed.

Results from the present study also suggest that adolescents may attempt to cope with PTI in a variety of differ-
ent ways, with some appearing to derive comfort from maintaining normality (e.g. focusing on daily life and rou-
tine). Helseth and Ulfsaet (2003) pose that engaging in activities reflective of life prior to diagnosis may provide
a useful distraction for young people; preventing them dwelling on their parent’s illness and its implications. In
this respect, maintaining normality may be viewed as a form of active (Herman-Stahl & Petersen, 1996). How-

Interpersona
2018, Vol. 12(2), 180–196
doi:10.5964/ijpr.v12i2.306
Cafferky, Banbury, & Athanasiadou-Lewis 191

ever, results from the present study suggest that maintaining normality may be demonstrative of active or avoi-
dant coping, as there may be an element of reluctance to accept that normality has changed.

Adaptive coping styles such as active (e.g. Ebata & Moos, 1991) or support-seeking (Herman-Stahl &
Petersen, 1996) have been linked to positive adjustment and a lesser likelihood of experiencing depressive
symptoms (Lawrence, 1996). The opposite can be said for less adaptive coping styles, and within the current
study two participants notably demonstrated more avoidant coping (Herman-Stahl & Petersen, 1996); through
use of drugs and alcohol. These participants appeared to feel particularly overwhelmed, and it may be that this
relates to losing their primary caregiver; as both participants depicted a distant or conflictual relationship with
their surviving parent.

Melcher et al. (2015) depict adolescence as a stressful period where teenagers strive to create an identity inde-
pendent of their families. They further suggest that a parent’s diagnosis of a TI, potentially shifts the adoles-
cent’s focus back towards their family. Participants in the present study highlight how the complexity of adoles-
cence was further compounded by their parent’s terminal diagnosis; creating a struggle in balancing priorities
and responsibilities. Participants subsequently described the various tasks and challenges associated with both
adolescence and PTI, and the difficulties they experienced in terms of understanding, processing and articulat-
ing what and how they were feeling during this complex and challenging period.

The centrality of the family system is highlighted in much of the literature and research in this area. Indeed,
Bugge et al. (2009) suggests that “the anticipated death of a parent from a terminal illness is a family crisis from
any perspective” (p.3487). An area of significant change for the participants in this study, appeared to be rela-
ted to the deterioration of their parent’s physical and mental health, which seemed to alter interfamilial relation-
ships and structure, and also increase adolescent distress. The parent’s worsening health necessitated the re-
negotiation of household roles and responsibilities, and the participants seemingly rose to meet their family’s
needs. However, whilst they demonstrated a strong sense of resilience in being able to adapt to their new posi-
tion, as was also reported by Melcher et al. (2015), a sense of struggle in managing significant responsibility
prematurely was also apparent.

Wong et al. (2010) contend that communication within families may be of increasing importance where a parent
has been diagnosed with a serious illness and open communication within families regarding illness has been
linked to children’s resilience and overall sense of wellbeing (Thastum et al., 2008; Wong et al., 2010). Yet, par-
ticipants in the current study suggest that following their parent’s diagnosis, information-sharing and communi-
cation reduced as family members attempted to protect each-other from additional distress. However, findings
from previous research intimates that reduced information-sharing and communication may be linked to de-
creased family cohesion; even when motivated by limiting distress (e.g. Tercyak, Streisand, Peshkin, & Lerman,
2000).

Adolescents may in general, have less experience of serious illness and death than adults, and may be less
equipped to respond to those who have. In terms of social support, participants stressed how other adolescents
struggled to respond helpfully to their circumstances, and there was a sense of being different and in some ca-
ses isolated. A further sense of stigma or stereotyping was discussed in relation to accessing supportive serv-
ices; whereby seeking support appeared to be associated with weakness.

Interpersona
2018, Vol. 12(2), 180–196
doi:10.5964/ijpr.v12i2.306
Reflecting on Parental Terminal Illness and Death During Adolescence 192

Moreover, whilst all participants expressed how the idea of seeing a counsellor or psychologist for therapy ap-
pealed to them, lengthy waiting times and limited session numbers were presented as considerable drawbacks.
It is well known that Mental Health Trusts in the NHS have long waiting lists for psychological therapy, and in
previous years, waiting times could be more than two years (James, 2011). However, beyond a practical level,
lengthy waiting times and a small number of sessions offered, may have communicated to the participants that
their need was not great or perhaps that they were not a priority.

Results from this study suggest that the impact and/or consequences of PTI and bereavement during adoles-
cence may be long-standing and far-reaching. Stroebe et al. (2014) name guilt and regret as commonly cited
reactions to the loss of a loved one. However, for the participants, it appears their feelings of guilt and regret
have not abated over time. Rather, now as adults, they seemed to be more aware and critical of their younger
selves and perceived failings. Results from this study also intimate how the participant’s experiences led TI and
bereavement to become more than abstract concepts but rather certain life occurrences, leading to greater fear
or anxiety around personal health and the health of loved ones. Phillips and Lewis (2015) similarly reported
how adolescents (aged 11-15) of advanced cancer patients expressed fears around being diagnosed with can-
cer themselves.

The present study has several limitations. As it only included 6 Caucasian British participants, it cannot be un-
derstood as representative of all individuals who had a parent diagnosed with a TI during adolescence and it
should also be considered that the current study did not make distinctions between types of TI diagnosis. Also,
no distinctions or differentiation has been made between pre/post bereavement experiences and as such, par-
ticipant accounts reflect a broader exploration of experiences.

Moreover, significant consideration was not given to cultural or religious factors. Cultural and religious back-
ground of adolescents may be of significance when considering their response to PTI and death (Robin &
Omar, 2014) and the characteristics of “normative” grieving responses may vary significantly according to cul-
tural and religious background (Batten & Oltjenbruns, 1999).

Retrospective accounts were used in the present study and this has facilitated a reflective exploration of PTI
and bereavement during adolescence, as well as the subsequent and ongoing impacts of experiences; from the
perspective of individuals now in adulthood. As such, results may offer a different perspective to those of ado-
lescents themselves, currently living through PTI and bereavement. Also, whilst retrospective accounts are fre-
quently used in both qualitative and quantitative research, it has also been asserted that individual memories
are altered and shaped by a variety of factors (Schuman, Rieger, & Gaidys, 1994); intimating that memories
and perceptions may alter over time.

Finally, the interviews conducted as part of this research were conducted via telephone. This was based upon
research findings suggesting that participants may feel more relaxed and able to disclose sensitive information
when the interviewer is not present (Opdenakker, 2006). Telephone interviews have been considered particular-
ly useful where traumatic and sensitive topics are being discussed (Trier-Bieniek, 2012). However, several limi-
tations of telephone interviews have been referenced, most particularly the absence of visual cues (Garbett &
McCormack, 2001).

Interpersona
2018, Vol. 12(2), 180–196
doi:10.5964/ijpr.v12i2.306
Cafferky, Banbury, & Athanasiadou-Lewis 193

Conclusions and Future Directions

Results from this study suggest that adolescents may be susceptible to becoming inadequately informed about
PTI, particularly in terms of being prepared for later stages of illness and bereavement itself. However, Miller
(2008) suggests that the more information adolescents receive regarding their parent’s illness, the fewer psy-
chological symptoms they are likely to experience. Yet, it may be difficult to establish the level of an adoles-
cent’s understanding; given their outward demeanour and reluctance to seek clarification. It may therefore be
important for parents and those working with this group to take time in providing adolescents with clear and
age-appropriate information regarding PTI; particularly in terms of redefining medicalised terminology.

Practitioners may also benefit from assessing adolescent coping skills and mechanisms, as findings suggest
that adaptive coping (e.g. active or help-seeking) may be protective for adolescents. Conversely feeling over-
whelmed following a TI diagnosis or post-bereavement may be related to more escapist coping (e.g. the use of
drugs and alcohol). The nature of parental relationships might also be usefully explored, as participants who
described feeling overwhelmed and unable to cope depicted a distant or conflictual relationship with their sur-
viving parent. Future research might further consider the relationship with the surviving parent as a potential
risk/protective factor for adolescents.

U.K. bereavement services are diverse in terms of their location, service offerings, organization, waiting times,
funding and the interventions offered (Rolls & Payne, 2007). These differences make it hard to present a clear
picture of bereavement services and for researchers to compare and evaluate. Future research might therefore
consider ways to improve and increase evaluation of childhood bereavement services and further consideration
should be given to pre-bereavement care for adolescents.

Rolls & Payne (2007) stress the importance of the experiences of service users in understanding, improving
and designing effective services and interventions for bereaved young people, however findings from the cur-
rent study also suggest that the perceptions of non-service-users may also be useful in understanding why ado-
lescents may be reluctant to access services and how accessibility and engagement may be improved. In addi-
tion, results from this study suggest that social acceptability and stigma may inhibit adolescent support-seeking
and these factors may also be usefully explored through further research.

Competing Interests
The authors have declared that no competing interests exist.

Funding
The authors have no funding to report.

Acknowledgments
The authors have no support to report.

Ethics Approval
In accordance to the BPS Human Research Ethics (BPS, 2010), all ethical guidelines, following university ethics clearance,
were adhered to.

Interpersona
2018, Vol. 12(2), 180–196
doi:10.5964/ijpr.v12i2.306
Reflecting on Parental Terminal Illness and Death During Adolescence 194

References

Batten, M., & Oltjenbruns, K. A. (1999). Adolescent sibling bereavement as a catalyst for spiritual development: A model for
understanding. Death Studies, 23(6), 529-546. doi:10.1080/074811899200876

Biank, N. M., & Werner-Lin, A. (2011). Growing up with grief: Revisiting the death of a parent over the life course. Omega,
63(3), 271-290. doi:10.2190/OM.63.3.e

Blake, D. R., Weber, B. M., & Fletcher, K. E. (2004). Adolescent and young adult women’s misunderstanding of the term
pap smear. Pediatric adolescent medicine, 158(10), 966-970. doi:10.1001/archpedi.158.10.966

Bremner, I. (2000). Working with adolescents. Bereavement Care, 19(1), 6-8. doi:10.1080/02682620008657480

British Psychological Society. (2014). Code of human research ethics. Retrieved from
https://www.bps.org.uk/news-and-policy/bps-code-human-research-ethics-2nd-edition-2014

Bugge, K. E., Helseth, S., & Darbyshire, P. (2009). Parents’ experiences of a family support program when a parent has
incurable cancer. Journal of Clinical Nursing, 18(24), 3480-3488. doi:10.1111/j.1365-2702.2009.02871.x

Childhood Bereavement Network. (2014). National statistics. Retrieved from

http://www.childhoodbereavementnetwork.org.uk/research/key-statistics.aspx

Christ, G. H., & Christ, A. E. (2006). Current approaches to helping children cope with a parent’s terminal illness. A Cancer
Journal for Clinicians, 56(4), 197-212. doi:10.3322/canjclin.56.4.197

Christ, G. H., Siegel, K., & Sperber, D. (1994). Impact of parental terminal cancer on adolescents. The American Journal of
Orthopsychiatry, 64(4), 604-613. doi:10.1037/h0079569

Dunning, S. (2006). As a young child’s parent dies: Conceptualizing and constructing preventive interventions. Clinical
Social Work Journal, 34(4), 499-514. doi:10.1007/s10615-006-0045-5

Ebata, A. T., & Moos, R. H. (1991). Coping and adjustment in distressed and healthy adolescents. Journal of Applied
Developmental Psychology, 12(1), 33-54. doi:10.1016/0193-3973(91)90029-4

Finlay, L. (2009). Debating phenomenological research methods. Phenomenology & Practice, 3(1), 6-25.

Garbett, R., & McCormack, B. (2001). The experience of practice development: An exploratory telephone interview study.
Journal of Clinical Nursing, 10, 94-102. doi:10.1046/j.1365-2702.2001.00455.x

Grabiak, B. R., Bender, C. M., & Puskar, K. R. (2007). The impact of parental cancer on the adolescent: An analysis of the
literature. Psycho-Oncology, 16(2), 127-137. doi:10.1002/pon.1083

Graham, S., & Brookey, J. (2008). Do patients understand? The Permanente Journal, 12(3), 67-69.
doi:10.7812/TPP/07-144

Helseth, S., & Ulfsaet, N. (2003). Having a parent with cancer: Coping and quality of life of children during serious illness in
the family. Cancer Nursing, 26(5), 355-362. doi:10.1097/00002820-200310000-00003

Herman-Stahl, M., & Petersen, A. C. (1996). The protective role of coping and social resources for depressive symptoms
among young adolescents. Journal of Youth and Adolescence, 25(6), 733-753. doi:10.1007/BF01537451

Interpersona
2018, Vol. 12(2), 180–196
doi:10.5964/ijpr.v12i2.306
Cafferky, Banbury, & Athanasiadou-Lewis 195

Houldin, A. D., & Lewis, F. M. (2006). Salvaging their normal lives: A qualitative study of patients with recently diagnosed
advanced colorectal cancer. Oncology Nursing Forum, 33(4), 719-725. doi:10.1188/06.ONF.719-725

James, I. A. (2011). Understanding behaviour that challenges: A guide to asessment and treatment. London, United
Kingdom: Jessica Kingsley Publishers.

Jantzer, V., Groß, J., Stute, F., Parzer, P., Brunner, R., Willig, K., . . . Resch, F. (2013). Risk behaviors and externalizing
behaviors in adolescents dealing with parental cancer - A controlled longitudinal study. Psycho-Oncology, 22(11),
2611-2616. doi:10.1002/pon.3327

Kristjanson, L. J., Chalmers, K. I., & Woodgate, R. (2004). Information and support needs of adolescent children of women
with breast cancer. Oncology Nursing Forum, 31(1), 111-119. doi:10.1188/04.ONF.111-119

Lawrence, G. B. (1996). The impact of coping and perceived control on adjustment in children who have lost a parent
(Unpublished doctoral dissertation).

Malone, P. A. (2016). Counselling adolescents through loss, grief and trauma. New York, NY, USA: Routledge.

McCarthy, J. (2006). Young people's experiences of loss and bereavement: Towards an interdisciplinary approach.
Maidenhead, United Kingdom: Open University Press.

Melcher, U., Sandell, R., & Henriksson, A. (2015). Maintaining everyday life in a family with a dying parent: Teenagers’
experiences of adapting to responsibility. Palliative & Supportive Care, 13(6), 1595-1601.
doi:10.1017/S1478951515000085

Miller, J. M. (2008). Parental cancer: The parent-child bond at risk (Doctoral dissertation). The Graduate School at The
University of North Carolina at Greensboro, Greensboro, NC, USA. Retrieved from
https://libres.uncg.edu/ir/uncg/f/umi-uncg-1476.pdf

Ohannessian, C. (2007). Parental cancer and its effects on adolescents and their families. Annals of Oncology: Official
Journal of the European Society for Medical Oncology, 18(12), 1921-1922. doi:10.1093/annonc/mdm482

Opdenakker, R. (2006). Advantages and disadvantages of four interview techniques in qualitative research. Forum
Qualitative Social Research, 7(4), Article 11. Retrieved from
http://www.qualitative-research.net/fqs-texte/4-06/06-4-11-e.htm.

Phillips, F. (2014). Adolescents living with a parent with advanced cancer: A review of the literature. Psycho-Oncology, 23,
1323-1339. doi:10.1002/pon.3570

Phillips, F., & Lewis, F. M. (2015). The adolescent’s experience when a parent has advanced cancer: A qualitative enquiry.
Palliative Medicine, 29(9), 851-858. doi:10.1177/0269216315578989

Reardon, T., Harvey, K., Baranowska, M., O’Brien, D., Smith, L., & Creswell, C. (2017). What do parents perceive are the
barriers and facilitators to accessing psychological treatment for mental health problems in children and adolescents? A
systematic review of qualitative and quantitative studies. European Child & Adolescent Psychiatry, 26(6), 623-647.
doi:10.1007/s00787-016-0930-6

Robin, L., & Omar, H. A. (2014). Adolescent bereavement. Pediatrics faculty publications. In J. Merrick, A. Tenenbaum, & H.
A. Omar (Eds.). School, Adolescence, and Health Issues (pp. 97-108). New York, NY, USA: Nova Science Publishers.

Interpersona
2018, Vol. 12(2), 180–196
doi:10.5964/ijpr.v12i2.306
Reflecting on Parental Terminal Illness and Death During Adolescence 196

Rolls, L., & Payne, S. A. (2007). Children and young people’s experience of UK childhood bereavement services. Mortality,
12(3), 281-303. doi:10.1080/13576270701430585

Schuman, H., Rieger, C., & Gaidys, V. (1994). Collective memories in the United States and Lithuania. In N. Schwarz & S.
Sudman (Eds.), Autobiographical Memory and the Validity of Retrospective Reports. New York, NY, USA: Springer-
Verlag.

Smith, J. A., & Eatough, V. (2006). Interpretative phenomenological analysis. In G. Breakwell, C. Fife-Schaw, S. Hammond,
& J. A. Smith (Eds.), Research methods in Psychology (3rd ed). London, United Kingdom: Sage.

Smith, J. A., & Osborn, M. (2008) Interpretative phenomenological analysis. In J. A. Smith (Ed.), Qualitative psychology: A
practical guide to research methods. London, United Kingdom: Sage.

Smith, J. A., Flowers, P., & Larkin, M. (2009). Interpretative phenomenological analysis: Theory, method and research.
London, United Kingdom: Sage.

Stroebe, M., Stroebe, W., van de Schoot, R., Schut, H., Abakoumkin, G., & Li, J. (2014). Guilt in bereavement: The role of
self-blame and regret in coping with loss. PLoS One, 9(5), Article e96606. doi:10.1371/journal.pone.0096606

Tercyak, K. P., Streisand, R., Peshkin, B. N., & Lerman, C. (2000). Psychosocial impact of predictive testing for illness on
children and families: Challenges for a new millennium. Journal of Clinical Psychology in Medical Settings, 7(1), 55-68.
doi:10.1023/A:1009597303743

Thastum, M., Johansen, M. B., Gubba, L., Olesen, L. B., & Romer, G. (2008). Coping, social relations, and communication:
A qualitative exploratory study of children of parents with cancer. Clinical Child Psychology and Psychiatry, 13(1),
123-138. doi:10.1177/1359104507086345

Thompson, F., & Payne, S. (2000). Bereaved children’s questions to a doctor. Mortality, 5(1), 74-96. doi:10.1080/713685997

Trier-Bieniek, A. (2012). Framing the telephone interview as a participant-centred tool for qualitative research: A
methodological discussion. Qualitative Research, 12(6), 630-644. doi:10.1177/1468794112439005

Turner, J., Clavarino, A., Yates, P., Hargraves, M., Connors, V., & Hausmann, S. (2007). Oncology nurses’ perceptions of
their supportive care for parents with advanced cancer: Challenges and educational needs. Psycho-Oncology, 16(2),
149-157. doi:10.1002/pon.1106

Visser, A., Huizinga, G. A., van der Graaf, W. T. A., Hoekstra, H. J., & Hoekstra-Weebers, J. E. H. M. (2004). The impact of
parental cancer on children and the family: A review of the literature. Cancer Treatment Reviews, 30(8), 683-694.
doi:10.1016/j.ctrv.2004.06.001

Willig, C. (2008). Introducing qualitative research in psychology. Maidenhead, United Kingdom: Open University Press.

Winston’s Wish. (2016). Winston’s Wish impact report 2015/16. Retrieved from
https://www.winstonswish.org/winstons-wish-impact-report-201516/

Wong, M., Ratner, J., Gladstone, K. A., Davtyan, A., & Koopman, C. (2010). Children’s perceived social support after a
parent is diagnosed with cancer. Journal of Clinical Psychology in Medical Settings, 17(2), 77-86.
doi:10.1007/s10880-010-9187-2

Interpersona PsychOpen GOLD is a publishing service by

2018, Vol. 12(2), 180–196 Leibniz Institute for Psychology Information (ZPID),
doi:10.5964/ijpr.v12i2.306 Trier, Germany. www.leibniz-psychology.org
 Death Studies

ISSN: (Print) (Online) Journal homepage: https://www.tandfonline.com/loi/udst20

Beyond a traumatic loss: The experiences of

mourning alone after parental death during
COVID-19 pandemic

Zahra Asgari, Azam Naghavi & Mohammad Reza Abedi

To cite this article: Zahra Asgari, Azam Naghavi & Mohammad Reza Abedi (2021): Beyond
a traumatic loss: The experiences of mourning alone after parental death during COVID-19
pandemic, Death Studies, DOI: 10.1080/07481187.2021.1931984

To link to this article: https://doi.org/10.1080/07481187.2021.1931984

Published online: 31 May 2021.

Submit your article to this journal

Article views: 85

View related articles

View Crossmark data

Full Terms & Conditions of access and use can be found at

https://www.tandfonline.com/action/journalInformation?journalCode=udst20
DEATH STUDIES
https://doi.org/10.1080/07481187.2021.1931984

BRIEF REPORT

Beyond a traumatic loss: The experiences of mourning alone after parental

death during COVID-19 pandemic
Zahra Asgari , Azam Naghavi , and Mohammad Reza Abedi
Department of Counseling, Faculty of Education and Psychology, University of Isfahan, Isfahan, Iran

ABSTRACT
Millions of adolescents around the world lost their loved ones due to the COVID-19 pan-
demic; at the same time, health protocols in many countries do not allow mourners to prac-
tice their familiar rituals around death and dying. This study explored the experience of 15
Iranian adolescents who had lost their parent(s) during the pandemic through a phenom-
enological approach. Two main themes including distress in a shattered life and crisis in crisis
were extracted from the interviews. Findings highlight the importance of immediate and
alternative ways of support for adolescents who lost their parents during the pandemic.

Introduction Mortazavi et al., 2020). Weinstock et al. (2021)

The high and increasing number of deaths by
COVID-19 has led Jackson et al. (2020) to call it a
“tsunami of death” (p. 2). Death, dying and rituals
around them have been profoundly affected by the
COVID-19 pandemic. Many people around the world
lost their chance of saying the last goodbye to their
loved ones as health protocols restricted hospital vis-
its. They also lost the opportunity of receiving usual
social support as the rule of social distancing prohib-
ited having large funeral/burial services or the practice
of some rituals (Stroebe & Schut, 2020). These restric-
tions and prohibitions could affect the emotional well-
being of grieving persons (Aguiar et al., 2020; Falk et
al., 2020) of over 3 million people who had lost their
lives from COVID-19 until May 2021 (World Health
Organization, 2021). Several researchers claimed that
death by COVID-19 can be categorized as a traumatic
loss as it is unexpected and unanticipated for many
people (Masiero et al., 2020; Walsh, 2020).
Adolescents may be more vulnerable during the
COVID-19 pandemic (de Figueiredo et al., 2021; Liu
et al., 2020) and if they lose a loved one, especially a
parent, they may face complicated or prolonged grief
(Falk et al., 2020; Weinstock et al., 2021). Many chil-
dren and adolescents will adapt to loss (Mosher, 2018;
Porter & Claridge 2021); however, several would bene-
fit from professional grief supports (Joaquim et al.,
2021). COVID-19 death’s circumstances may lead to
complicated or prolonged grief (Breen et al., 2021;
claimed that the world may face a “grief pandemic”
(p. 1), and it seems that this may so for adolescents.
Parental loss is considered as one of the most stressful
events in the human life (Ludik & Greeff, 2020) and it
can be a traumatic event for children regardless of the
nature of the death (Bergman et al., 2017; Cohen et
al., 2016). Adolescence is itself a critical period, as
teenagers face several biological and developmental
transitions such as puberty, identity formation, less
capacity for emotion regulation (Weinstock et al.,
2021), and increased emotional bonds with their peers
(Galla et al., 2020; Patel et al., 2021). Also, in contrast
to young children, adolescents have acquired abstract
thinking and know that death is irreversible (Santos et
al., 2021). The unique nature of pandemic deaths,
such as isolation of the patients and the different
methods of funeral/burial rituals, can seriously affect
the survivors’ mental health including children and
adolescents (Aguiar et al., 2020).
Although adolescents may experience some chal-
lenges in coping with parental death (Schoenfelder &
Haine-Schlagel, 2011), they are generally overlooked
in the literature (Mosher, 2018) and in the COVID-19
pandemic (Rapa et al., 2020). We therefore aimed to
explore the unique experience of losing parent(s)
during the COVID-19 pandemic among Iranian
adolescents.

CONTACT Azam Naghavi Az.naghavi@edu.ui.ac.ir Department of Counseling, Faculty of Education and Psychology, University of Isfahan, Azadi sq,
Isfahan, Iran.
ß 2021 Taylor & Francis Group, LLC
2 Z. ASGARI ET AL.

Table 1. Participant demographic characteristics (N ¼ 15).

Months after the loss
Participant No. Gender Age Grade Loss of … Place of death At time of the interview
P1 Female 15 9th Father Hospital 3
P2 Female 18 12th Mother Hospital 4
P3 Female 14 8th Father Home 3
P4 Female 14 8th Father Hospital 4
P5 Female 15 9th Parents Hospital 5
P6 Female 16 10th Parents Hospital 2
P7 Female 17 11th Mother Hospital 5
P8 Female 14 8th Parents Hospital 1
P9 Male 16 10th Mother Home 5
P10 Male 15 9th Father Hospital 4
P11 Male 18 12th Father Hospital 3
P12 Male 17 11th Father Home 4
P13 Male 18 10th Parents Hospital 1
P14 Male 16 10th Mother Hospital 2
P15 Male 17 11th Parents Hospital 4

Materials and methods
A descriptive phenomenological approach was
employed to understand the experience of mourning
and bereavement among Iranian adolescents who lost
their parent(s) due to COVID-19. This method
focuses on the non-judgmental and rich description of
people’s lived experiences (Willig & Rogers, 2017).
Criteria for eligibility to participation were being ado-
lescents (13 to 18 years old) and exposed to the unex-
pected death of parent(s) due to COVID-19.
Setting
The study was conducted in Isfahan, one of the largest
cities in the center of Iran. By May 2021, over 74,000
of deaths by the COVID-19 were reported in this
country (World Health Organization, 2021). Islam is
the religion of most Iranians and like other religions,
it has its own death rites. There is praying with the
body, ritual washing, and the burial. After the burial,
the family and friends get together for seven days of
mourning, and the deceased family offer meals to the
visitors. The first, third, seventh, and the fortieth days
are the most important days after the funeral, and
people try to comfort mourners during this time.
Following the health protocols, Iran also banned hav-
ing such gatherings during the pandemic.
Participants and procedures
Participants were selected thorough purposive and
snowball sampling from schools and the organizations
that support orphan students in Isfahan. The first
author contacted schools and organizations to identify
possible participants then contacted the participants
who agreed to be interviewed. The schools and organ-
izations only provided the information of participants
after their informed consent; however, three partici-
pants refused to participate after their initial verbal
informed consent because of their mental health
issues. They were referred to psychiatrists. Semi-
structured interviews were conducted with 8 girls and
7 boys (14–18 years) who had one or both parents die
from COVID-19. Interviews were conducted by the
first author who is a licensed school counselor and
trained qualitative researcher. All interviews were con-
ducted in Persian language and only the related
quotes to this paper were translated by the third
author who is a bilingual psychologist and qualitative
researcher. The demographic characteristics of partici-
pants are provided in Table 1.
Due to the health protocols and lockdown restric-
tions, data were collected through semi-structured
online video call using WhatsApp or Skype program.
The interviews lasted approximately 60 min and were
recorded with the informed consent of the partici-
pants. The topics covered in the interviews included:
the first encounter with the news, the emotions expe-
rienced, the funeral rituals or alternative ways of
mourning, and plans for the future. Some of the ques-
tions were “How did this happen?”, “Were you with
the deceased parent when s/he passed away?”, “Could
you explain your thoughts and feelings when you
heard the bad news?”, and “Were funeral rituals con-
ducted for your deceased parent?”. The interviews
continued with probes and exploratory questions.
Data analysis
Analysis occurred concurrently with data collection.
We used Colaizzi’s (1978) method to analyze the data
and used MAXQDA software to organize the analysis.
Interviews were transcribed verbatim by the first
author. The first and the third authors read and re-
read the texts line by line and made the initial coding

separately. Then they shared the codes and discussed
about them until agreement. In the next step, we cate-
gorized the codes into sub-themes and themes. Then,
the themes were reviewed, defined, and named. We
used Lincoln and Guba (2013) criteria to ensure trust-
worthiness of the analysis. Therefore, to ensure con-
formability, the second author made an external check
about the quality of the extracted codes and themes.
To ensure the credibility of the study, we produced an
audit trail and a summary of the codes and themes to
all participants. They were asked if the results
reflected their experiences. Participants believed that
we had captured the essence of their thoughts and did
not make suggestions for change.
Ethics
Ethics approval was granted by the University of
Isfahan Ethics Committee (IR.UI.REC.1397.082).
Participants could withdraw from the interview at any
time. None withdrew and some expressed appreciation
about having an opportunity to talk about their
thoughts and feelings. We used pseudonyms to pro-
tect the identities of the participants. The interviewer
finished each interview by making sure the partici-
pant’s emotionally state was acceptable and followed
up with them through text chat. All participants were
offered free counseling sessions or referred to a psych-
iatrist if they needed.
Results
Two main themes were extracted from the interviews:
Distress in a shattered life with two sub-themes and
Crisis in crisis with three sub-themes.
Distress in a shattered life
All participants believed that the loss of parent(s)
shattered their life and created ongoing distress.
Drowned in the ocean of emotions
For some participants, the loss of their parent(s) was
their first encounter with death, and this made the
intensity of the traumatic loss even more. Their main
distressing feelings after the loss and mourning included
prolonged feelings of shock and denial due to unpre-
dictable death, excessive guilt, loneliness, and isolation.
For example, “I still can’t believe that my father passed
away because of a virus, while I could not even hug
him for the last time and say goodbye … No one came
to bury him and we buried my father alone” (P1), “I
DEATH STUDIES 3
feel guilty, I left my father alone in the hospital. It was
very painful for me that no family member was with
my father when he passed away” (P4), and “I saw tears
in her eyes when my mom took her last breaths, and I
could not do anything. It was so painful. I cannot forget
that moment” (P9).
Meaningless life
Some participants stated that they felt life to be mean-
ingless after the parental loss. They expressed confusion
and shared thoughts that nothing mattered to them
anymore in such insecure and unstable world. P8 ques-
tioned, “Why do they have to die suddenly, and why
do I have to mourn alone in this heart-wrenching situ-
ation? Why am I alive now? What do I want from my
life?” and P12 explained, “Life has meaning with the
family members. My dad was the pillar of our life;
without him, everything is collapsed.” P5 stated:
I am the only child. My parents were physicians
caring for Corona patients, and they both died. My
parents were all my hopes in my life. Now, I have
only one aunt who takes care of me. I no longer have
any motivation to be in this extremely scary world.
Crisis in crisis
The unexpected death of parents created a crisis and
the COVID-19 mourning condition added more crisis.
Most of the participants highlighted that lack/low level
of support and empathy from their social networks
had reduced their resilience and led them to do/think
about risky behaviors such as a suicide attempt or
substance/alcohol abuse.
Lack of social support
Almost all participants reported a low level of social
support from their social network in the absence of a
funeral ceremony, and this social isolation made the
traumatic event even more difficult:
Only a few relatives, about four or five persons, came
to our house after the day my father died. My peers
and friends were afraid that they might get infected if
they came in contact with me, so they said their
condolences via online chat. (P3)
I wanted to kiss my mother’s beautiful face for the
last time at the funeral, but I could not do that. I had
not seen her for more than a week because she was
hospitalized in the Corona center. My father, brother
and I were silent during the funeral. Where were our
relatives and friends? They just heard about our pain
but did not have any empathy and consolation with
us at that moment. Seeing my father crouched in
those situations seemed more difficult than becoming
motherless. (P2)
4 Z. ASGARI ET AL.
Some participants expressed anger because they felt
stigmatized when people labeled and kept a distance
with them. A feeling of being stigmatized made the
complexity of the loss worse. P7 recalled: “I heard a
man talking to his wife when he saw my mom’s death
notice on the wall; ‘Hey, this house is a source of
Corona,’ he said” (P7). Another commented:
I do not complain to anyone for not coming to my
parents’ funeral, I fully understand the sensitive situation
of these days. But the heavy look of the neighbors and
their unusual behaviors of keeping physical distance and
the excessive distance of my relatives in these difficult
days make me very sad and angry. (P15)
Risky behaviors
Several participants reported that engaging in behav-
iors such as substance and alcohol use and having sui-
cide ideation after the traumatic loss could alleviate
their pain, although these behaviors could expose
them to more dangers. “These days I think of not
being in the world. I think, how can I free myself
from all these sufferings?” (P15) and “In these dumb
and difficult days, only alcohol and cigarettes can
calm me down. I did not like them at all before, but
now I cannot quit them. They calm me down” (P10).
Academic maladaptation
Most of the participants stated that a substantial
change due to the pandemic was the transition to
online education. They described the change as having
a profound effect on their academic performance,
which was exacerbated by the experience of a sudden
loss of one or both parents. They recounted unfavor-
able effects such as academic failure, online class
absences, lack of communication with classmates, and
reduced engagement in the class activities, and lack of
motivation to succeed. For example, “It was too diffi-
cult to adjust to the new changes at the online school.
I missed most of my classes because I could not toler-
ate the stress of my loss and those classes” (P9), “Now
that I feel the need for more communication, I do not
have a friend to talk to about my feelings.” (P12), and
“With what happened, I have no desire to try and set
a goal to enter the university. I am so depressed with
the suppressed mourning” (P11).
Discussion
The findings indicate that the parental death related to
COVID-19 was considered as a traumatic experience
for the bereaved teenagers. They had to endure the
sudden loss with a high level of stress, loneliness, and
gruesome feelings (LeRoy et al., 2020). Like previous
studies about traumatic loss (Johannesson et al., 2009;
McGee et al., 2018), our participants felt ongoing dis-
tress, and a rush of complex negative emotions such a
mixture of feelings of shock, despair, anger, regret, and
guilt. Moreover, the prohibition of hospital visit led to
unanswered questions about the last words that the
parent(s) would say, the last thought that the parent(s)
would have in their lonely deathbed, and a deep sad-
ness of not being able to say goodbye.
Feelings of meaningless after the traumatic loss is
consistent with the previous studies that found trau-
matic loss may delay or complicate the meaning mak-
ing and identity creation during adolescence (Hamid
& Jahangir, 2020). The low level of self-awareness in
such situations and the suddenness of the trauma may
disrupt the adolescents’ assumptions about themselves
and the world, so they may lose their sense of mean-
ing of life (Malone, 2016; Mortazavi et al., 2020;
Walsh, 2020). Although social support may have a
profound influence on creating meaning for the loss
(Smid, 2020), the necessary health protocols during
the pandemic negatively affected the teenage mourn-
ers. We used the term, “crisis in crisis” to refer to
mourning alone after a traumatic loss, which differen-
tiates the bereavement and mourning during the pan-
demic from other traumatic loss situations.
According to Burrell and Selman (2020), mourners
need to receive physical comfort during the funeral
such as touching, hugging, handshaking, or talking to
each other for consolation. Such behaviors are also
common in the Iranian culture but are prohibited by
health protocols during COVID-19, which could lead
to emotional pain (Johns et al., 2020). The literature
highlights that complicated grief may appear when
people face traumatic loss, mourn in isolation, and are
unable to say goodbye to the deceased (Burrell &
Selman, 2020), and experience excessive negative emo-
tions (Li et al., 2019). Mourning alone was more com-
plicated for adolescents who felt socially stigmatized
by their friends and relatives who were scared that the
deceased family might be the virus carrier, and who
were unable to receive face-to-face peer support due
to online learning. Their maladaptive and risky behav-
iors are consistent with those reported previously
(Ammerman et al., 2021; Liang et al., 2020). Davis et
al. (2012) emphasized the importance of the role of
the family in meaning-making after a traumatic loss
and stated that the meaning making is associated with
a lower level of depression. For our participants, the
whole family was in crisis. Thus, the term “traumatic
loss” might not fully explain the intensity of suffering
of the participants. Instead, we posit their experiences
are “beyond traumatic loss.”

At times of crisis, children and adolescents turned
to parents to learn how to cope with the situation and
how to make a meaning for the crisis, and when death
is involved, their presence in the ritual rites around
death is recommended. Adolescents who lose a parent
during the COVID-19 pandemic, face multiple losses:
the loss of loved ones, the loss of role-model for cop-
ing and meaning-making for the loss, the loss of
opportunities of saying goodbye, the loss of practicing
familiar rituals, and the loss of social support. As the
world was not prepared to answer all aspects of the
pandemic, it seems that the psychological needs of
children and adolescents are overlooked. This study
suggests a need for action to identify and support
bereaved adolescents whose parent(s) died during the
pandemic. Online platforms can be employed to
deliver tele-mental health interventions when social
distancing is applicable (Dores et al., 2020).
We used online interviews with participants, hence
we faced some challenges in analyzing facial expressions,
and achieving more data through observing body lan-
guages during the interviews. However, it is worth men-
tioning that online interviews had positive aspects, as we
could interview adolescents from a larger geographical
area. Furthermore, the study was conducted shortly after
the death of parents; hence, we were not able to deter-
mine longer-term outcomes. Designing longitudinal
studies to determine long-term effects of parental
bereavement during the pandemic seems necessary and
timely. There is also a need to study alternative ways of
supporting bereaved adolescents. Online interventions
may help adolescents to express their feelings and con-
nect with their friends when there are restrictions on
social gatherings. These new methods seem crucial as
many young people spends long hours on social media
(Dong et al., 2020).
Acknowledgments
Authors would like to thank the anonymous participants
for sharing their personal traumatic experiences.
Disclosure statement
No potential conflict of interests was reported by author.
ORCID
Zahra Asgari http://orcid.org/0000-0001-7239-2048
Azam Naghavi http://orcid.org/0000-0003-0559-6192
Mohammad Reza Abedi http://orcid.org/0000-0003-
3162-7044
DEATH STUDIES 5
References
Ammerman, B. A., Burke, T. A., Jacobucci, R., & McClure,
K. (2021). Preliminary investigation of the association
between COVID-19 and suicidal thoughts and behaviors
in the US. Journal of Psychiatric Research, 134, 32–38.
https://doi.org/10.1016/j.jpsychires.2020.12.037
Aguiar, A., Pinto, M., & Duarte, R. (2020). Grief and
mourning during the COVID-19 Pandemic in Portugal.
Acta Medica Portuguesa, 33(9), 543–545. https://doi.org/
10.20344/amp.14345
Bergman, A. S., Axberg, U., & Hanson, E. (2017). When a
parent dies–a systematic review of the effects of support
programs for parentally bereaved children and their care-
givers. BMC Palliative Care, 16(1), 1–15. https://doi.org/
10.1186/s12904-017-0223-y
Breen, L. J., Lee, S. A., & Neimeyer, R. A. (2021).
Psychological risk factors of functional impairment after
COVID-19 deaths. Journal of Pain and Symptom
Management, 61(4), e1–e4. https://doi.org/10.1016/j.jpain-
symman.2021.01.006
Burrell, A., & Selman, L. E. (2020). How do funeral practi-
ces impact bereaved relatives’ mental health, grief and
bereavement? A mixed methods review with implications
for COVID-19. OMEGA- Journal of Death and Dying.
https://doi.org/10.1177/0030222820941296
Cohen, J. A., Mannarino, A. P., & Deblinger, E. (2016).
Treating trauma and traumatic grief in children and ado-
lescents. The Guilford Press.
Colaizzi, P. (1978). Psychological research as a phenomen-
ologist views it. In R. S. Valle & M. King (Eds),
Existential phenomenological alternatives for psychology.
Open University Press.
de Figueiredo, C. S., Sandre, P. C., Portugal, L. C. L.,
Mazala-de-Oliveira, T., da Silva Chagas, L., Raony, I.,
Ferreira, E. S., Giestal-de-Araujo, E., Dos Santos, A. A., &
Bomfim, P. O.-S. (2021). COVID-19 pandemic impact on
children and adolescents’ mental health: Biological, envir-
onmental, and social factors. Progress in Neuro-
Psychopharmacology and Biological Psychiatry, 106,
110171. https://doi.org/10.1016/j.pnpbp.2020.110171
Dong, H., Yang, F., Lu, X., & Hao, W. (2020). Internet addic-
tion and related psychological factors among children and
adolescents in China during the coronavirus disease 2019
(COVID-19) epidemic. Frontiers in Psychiatry, 11, 751.
https://doi.org/10.3389/fpsyt.2020.00751
Dores, A. R., Geraldo, A., Carvalho, I. P., & Barbosa, F.
(2020). The use of new digital information and commu-
nication technologies in psychological counseling during
the COVID-19 pandemic. International Journal of
Environmental Research and Public Health, 17(20), 7663.
https://doi.org/10.3390/ijerph17207663
Galla, B. M., Tsukayama, E., Park, D., Yu, A., &
Duckworth, A. L. (2020). The mindful adolescent:
Developmental changes in nonreactivity to inner experi-
ences and its association with emotional well-being.
Developmental Psychology, 56(2), 350–363. https://doi.org/
10.1037/dev0000877
Davis, C. G., Harasymchuk, C., & Wohl, M. J. (2012).
Finding meaning in a traumatic loss: A families
approach. Journal of Traumatic Stress, 25(2), 142–149.
https://doi.org/10.1002/jts.21675
6 Z. ASGARI ET AL.
Falk, M. W., Alvariza, A., Kreicbergs, U., & Sveen, J. (2020).
End-of-life-related factors associated with posttraumatic
stress and prolonged grief in parentally bereaved adoles-
cents. OMEGA-Journal of Death and Dying. https://doi.
org/10.1177/0030222820963768
Hamid, W., & Jahangir, M. S. (2020). Dying, death and
mourning amid COVID-19 pandemic in Kashmir: A
qualitative study. OMEGA-Journal of Death and Dying.
https://doi.org/10.1177/0030222820911544
Jackson, D., Bradbury-Jones, C., Baptiste, D., Gelling, L.,
Morin, K., Neville, S., & Smith, G. D. (2020). Life in the
pandemic: Some reflections on nursing in the context of
COVID-19. Journal of Clinical Nursing, 29(13–14),
2041–2043. https://doi.org/10.1111/jocn.15257
Joaquim, R. M., Pinto, A. L. C. B., Guatimosim, R. F., de
Paula, J. J., Souza Costa, D., Diaz, A. P., da Silva, A. G.,
Pinheiro, M. I. C., Serpa, A. L. O., Miranda, D. M., &
Malloy-Diniz, L. F. (2021). Bereavement and psycho-
logical distress during COVID-19 pandemics: The impact
of death experience on mental health. Current Research
in Behavioral Sciences, 2, 100019. https://doi.org/10.1016/
j.crbeha.2021.100019
Johannesson, K. B., Lundin, T., Hultman, C. M., Lindam,
A., Dyster-Aas, J., Arnberg, F., & Michel, P. O. (2009).
The effect of traumatic bereavement on tsunami-exposed
survivors. Journal of Traumatic Stress, 22(6), 497–504.
https://doi.org/10.1002/jts.20467
Johns, L., Blackburn, P., & McAuliffe, D. (2020). COVID-
19, prolonged grief disorder and the role of social work.
International Social Work, 63(5), 660–664. https://doi.org/
10.1177/0020872820941032
LeRoy, A. S., Robles, B., Kilpela, L. S., & Garcini, L. M.
(2020). Dying in the face of the COVID-19 pandemic:
Contextual considerations and clinical recommendations.
Psychological Trauma: Theory, Research, Practice, and
Policy, 12(S1), S98–S99. https://doi.org/10.1037/tra0000818
Li, J., Tendeiro, J. N., & Stroebe, M. (2019). Guilt in
bereavement: Its relationship with complicated grief and
depression. International Journal of Psychology: Journal
International de Psychologie, 54(4), 454–461. https://doi.
org/10.1002/ijop.12483
Liu, J. J., Bao, Y., Huang, X., Shi, J., & Lu, L. (2020). Mental
health considerations for children quarantined because of
COVID-19. The Lancet. Child & Adolescent Health, 4(5),
347–349. https://doi.org/10.1016/S2352-4642(20)30096-1
Liang, L., Gao, T., Ren, H., Cao, R., Qin, Z., Hu, Y., Li, C., &
Mei, S. (2020). Post-traumatic stress disorder and psycho-
logical distress in Chinese youths following the COVID-19
emergency. Journal of Health Psychology, 25(9), 1164–1175.
https://doi.org/10.1177/1359105320937057
Lincoln, Y. S., & Guba, E. G. (2013). The constructivist
credo. Left Coast Press.
Ludik, D., & Greeff, A. P. (2020). Exploring factors that
helped adolescents adjust and continue with life after the
death of a parent. OMEGA-Journal of Death and Dying.
https://doi.org/10.1177/0030222820923905
Malone, P. A. (2016). Counseling adolescents through loss,
grief, and trauma. Routledge.
Masiero, M., Mazzocco, K., Harnois, C., Cropley, M., &
Pravettoni, G. (2020). From individual to social trauma:
Sources of everyday trauma in Italy, the US And UK
during the COVID-19 pandemic. Journal of Trauma &
Dissociation, 21(5), 513–517. https://doi.org/10.1080/
15299732.2020.1787296
McGee, K., PettyJohn, M., & Gallus, K. L. (2018).
Ambiguous loss: A phenomenological exploration of
women seeking support following miscarriage. Journal of
Loss and Trauma, 23(6), 516–530. https://doi.org/10.
1080/15325024.2018.1484625
Mortazavi, S. S., Assari, S., Alimohamadi, A., Rafiee, M., &
Shati, M. (2020). Fear, loss, social isolation, and incom-
plete grief due to COVID-19: A recipe for a psychiatric
pandemic. Basic and Clinical Neuroscience, 11(2),
225–232. https://doi.org/10.32598/bcn.11.covid19.2549.1
Mosher, P. J. (2018). Everywhere and nowhere: Grief in
child and adolescent psychiatry and pediatric clinical
populations. Child and Adolescent Psychiatric Clinics of
North America, 27(1), 109–124. https://doi.org/10.1016/j.
chc.2017.08.009
Patel, P. K., Leathem, L. D., Currin, D. L., & Karlsgodt,
K. H. (2021). Adolescent neurodevelopment and vulner-
ability to psychosis. Biological Psychiatry, 89(2), 184–193.
https://doi.org/10.1016/j.biopsych.2020.06.028
Porter, N., & Claridge, A. M. (2021). Unique grief experien-
ces: The needs of emerging adults facing the death of a
parent. Death Studies, 45(3), 191–201. https://doi.org/10.
1080/07481187.2019.1626939
Rapa, E., Dalton, L., & Stein, A. (2020). Talking to children
about illness and death of a loved one during the
COVID-19 pandemic. The Lancet Child & Adolescent
Health, 4(8), 560–562. https://doi.org/10.1016/S2352-
4642(20)30174-7
Santos, S., Sa, T., Aguiar, I., Cardoso, I., Correia, Z., &
Correia, T. (2021). Case report: Parental loss and child-
hood grief during COVID-19 pandemic. Frontiers in
Psychiatry, 12, 626940. https://doi.org/10.3389/fpsyt.2021.
626940
Schoenfelder, E., & Haine-Schlagel, R. (2011). Parental
bereavement. In R. R. Levesque (Ed.), Encyclopedia of
adolescence (pp. 1976–1986). Springer.
Smid, G. E. (2020). A framework of meaning attribution
following loss. European Journal of Psychotraumatology,
11(1), 1776563. https://doi.org/10.1080/20008198.2020.
1776563
Stroebe, M., & Schut, H. (2020). Bereavement in times of
COVID-19: A review and theoretical framework.
OMEGA-Journal of Death and Dying, 82(3), 500–522.
https://doi.org/10.1177/0030222820966928
Walsh, F. (2020). Loss and resilience in the time of
COVID-19: Meaning making, hope, and transcendence.
Family Process, 59, 898–911. https://doi.org/10.1111/famp.
12588
Weinstock, L., Dunda, D., Harrington, H., & Nelson, H.
(2021). It’s complicated—adolescent grief in the time of
COVID-19. Frontiers in Psychiatry, 12, 166. https://doi.
org/10.3389/fpsyt.2021.638940
Willig, C., & Rogers, W. S. (2017). The SAGE handbook of
qualitative research in psychology. SAGE.
World Health Organization. (2021). WHO coronavirus dis-
ease (COVID-19) dashboard. Retrieved January 28, 2021,
from https://covid19.who.int/