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ANALISIS JURNAL

Sebagai Prasyarat Tugas Mata Kuliah Metodologi Penelitian Kualitatif

Dosen : Dr. Asti Melani Astari, S.Kp.,M.Kep., Sp. Mat

Oleh:

Ucik Ernawati (196070300111004)

2020
PROGRAM STUDI MAGISTER KEPERAWATAN
JURUSAN KEPERAWATAN FAKULTAS KEDOKTERAN
UNIVERSITAS BRAWIJAYA
MALANG

2020
KATA PENGANTAR

Assalamualaikum.wr.wb. Segala puji bagi Allah SWT atas rahmat


dan kesehatan yang dilimpahkan hingga saat ini, dengan pertolongan-Nya
makalah

sebagai penugasan Mata Kuliah Metodologi Kualitatif dapat diselesaikan.


Makalah ini bertujuan untuk memperluas ilmu metodologi
kualitatif khusunya dalam lingkup penelitian pada kasus Keperawatan
Medikal Bedah khususnya gangguan diabetes melitus , dibuat berdasarkan dari
berbagai sumber termasuk sumber penelitian atau jurnal. Memuat
kepatuhan pasien dalam

penanganan diabetes melitus.


Penyusun mengucapkan terimakasih kepada dosen mata kuliah
Metodologi Penelitian dan juga teman - teman sehingga makalah ini dapat
terselesaikan. Semoga makalah ini dapat bermanfaat bagi pembaca
sebagai literatur

pembelajaran.

Penyusun
BAB I
PENDAHULUAN

1.1 Latar Belakang


Diabetes Mellitus (DM) merupakan penyakit kronik yang
dimanifestasikan dengan kadar glukosa tinggi (hiperglikemia) diakibatkan
karena gangguan metabolisme dimana pasien tidak bisa memproduksi insulin
dalam jumlah yang cukup (Smeltzer & Bare, 2008). Prevalensi DM selalu
mengalami peningkatan, kasus yang tidak diatasi dengan baik akan berisiko
tinggi mengalami komplikasi serius yang dapat mengakibatkan kematian.
DM menjadi perhatian karena merupakan penyakit metabolik dengan
kelainan sekresi insulin, kerja insulin atau keduanya, yang terjadi karena
salahsatunya karena ketidakpatuhan diet

(Z., S., & E.Z., 2018).


Kepatuhan diet pasien DM tipe 2 dapat mengurangi risiko
terjadinya serangan krisis hiperglimik (PERKENI, 2015). Perilaku patuh
dibagi dalam 2 golongan yaitu perilaku patuh tertutup dan perilaku patuh
terbuka. Perilaku patuh tertutup merupakan suatu reaksi terhadap stimulus
yang belum tampak jelas, masih terbatas pada bentuk pengetahuan, sikap,
persepsi, dan perasaan. Sebaliknya dengan perilaku patuh terbuka yaitu
reaksi terhadap stimulus dengan melakukan praktik yang terlihan secara
jelas (Notoatmodjo, 2014). Faktor yang dapat mempengaruhi
ketidakpatuhan diet adalah faktor sosial budaya diantaranya budaya
disetiap komunitas itu sendiri, dukungan sosial,

serta rasa kekeluargaan dalam masyarakat (Osei-Kwasi et al, 2016)

1.2 Tujuan
Tujuan dari penyusunan makalah terkait mata kuliah
metodologi penelitian kualitatif ini adalah mengkritisi menelaah jurnal
dengan tema ketidakpatuhan diet pada penderita diabetes melitus dari
beberapa sumber dan

kasus.
1.3 Manfaat
Penugasan ini diharapkan dapat mengembangkan pengetahuan
terkait metodologi penelitian kualitatif, dan dapat menerapkannya dalam
penelitian di

lingkup keperawatan medikal bedah khususnya pada kasus diabetes melitus.


BAB II
ISI JURNAL

2.1 Artikel 1
a. Identitas Jurnal
1) Judul :
Barriers of medication adherence in patients with type 2 diabetes : a

pilot qualitative study


2) Penulis :
Mehdi Rezaei, Sina Valiee, Mohammad Tahan, Fariba Ebtekar, and

Reza Ghanei Gheshlagh


3) Identitas Publikasi :
Diabetes, metabolic syndrome and obesity: taergets and therapy, Ed.

12, hal 589-599


b. Isi Jurnal
Kepatuhan yang rendah terhadap rezim terapeutik pada pasien
diabetes tipe-2 dapat mengakibatkan berbagai komplikasi dengan kontrol
metabolisme yang tidak diinginkan. Komplikasi dapat meliputi gangguan semua
sistem tubuh. Studi ini dilakukan dengan tujuan untuk mengeksplorasi
penghambat kepatuhan

pengobatan pada pasien dengan diabetes tipe-2.


Studi ini merupakan penelitian kualitatif menggunakan metode
analisis konten konvensional. Partisipan adalah 12 pasien dengan diabetes
tipe-2 yang dirujuk ke unit diabetes di Saghez, Provinsi Kurdistan pada tahun
2015. Metode purposive sampling digunakan dengan variasi maksimum
dalam pengambilan

sampel, dan pengumpulan data dilanjutkan sampai saturasi data


tercapai. Wawancara semi-terstruktur digunakan untuk pengumpulan
data. Wawancara direkam dan segera ditranskrip secara verbatim.
Analisis data mengarah pada pengembangan empat kategori utama
termasuk ketidakpercayaan dalam pengetahuan penjelas / preskriptif
medis, pengalaman hidup dari penyakit, tantangan kehidupan sehari-
hari, dan

tantangan interaktif / ekonomi. Inhibitor utama adalah pemahaman pasien


tentang status fisiknya sendiri dan strategi yang digunakan untuk menjaga
keseimbangan internal. Penyedia layanan kesehatan perlu
mempertimbangkan persepsi pasien ketika mereka meresepkan diet obat.
Penghambat lainnya adalah insiden kehidupan sehari-hari, termasuk
tantangan ekonomi dan sosial, dan interaksi untuk menerima pendidikan dan
keterampilan untuk hidup dengan

penyakit tersebut.
Kurangnya kepercayaan pada tim medis dan pengalaman unik
masing- masing pasien dan tantangan dalam kehidupan sehari-hari, adalah
hambatan untuk kepatuhan terhadap pengobatan pada pasien dengan
diabetes tipe 2. Oleh karena itu, selain mencoba untuk mendapatkan
kepercayaan pasien, tim medis harus fokus pada merancang program
perawatan khusus untuk setiap pasien berdasarkan pengalaman hidup
mereka dan peran serta tantangan unik

dalam kehidupan untuk meningkatkan kepatuhan mereka terhadap pengobatan.

2.2 Artikel 2
a. Identitas Jurnal
1) Judul :
A qualitative study to explore the perception and behavior of patients

towards diabetes management with physical disability


2) Penulis :
Syed Wasif Gillani, Syed Azhar Syed Sulaiman, Mohi Iqbal Mohammad

Abdul, and Sherif Y. Saad


3) Identitas Publikasi :
Diabetology Metabolic Syndrome 9, 58 (https://doi.org/10.1186/s13098-

017-0257-6).
b. Isi Jurnal
Pasien dengan pengobatan kasus ketidakpatuhan berpengaruh pada
kegagalan dalam pencapaian hasil terapi yang optimal. Penting bagi
pasien diabetes mellitus tipe-2 untuk memperhatikan kepatuhan dalam
proses medikasi. Sehingga penelitiaan ini memiliki maksud untuk
mengksplorasi praktik pemantauan diri, kesadaran akan modifikasi diet dan
hambatan kepatuhan

pengobatan pada diabetes mellitus tipe-2 yang cacat fisik.


Sesi wawancara dilakukan di Klinik Diabetes Rumah Sakit
Umum Penang. Peserta yang diundang mewakili tiga kelompok etnis utama
Malaysia (Melayu, Cina, dan India). Pendekatan terbuka digunakan untuk
memperoleh jawaban dari peserta. Pertanyaan wawancara terkait dengan
persepsi peserta terhadap praktik pemantauan glukosa darah pemantauan diri
sendiri, kesadaran terhadap manajemen diet, perilaku terhadap pengobatan
diabetes dan isyarat

tindakan.
Sebanyak dua puluh satu pasien diabetes antara usia 35-67
tahun dengan cacat fisik (P1-P21) diwawancarai. Kelompok peserta
didominasi oleh laki-laki (n = 12) dan juga pola distribusi menunjukkan
mayoritas peserta adalah Melayu (n = 10), diikuti oleh Cina (n = 7) dan sisanya
orang India (n = 4). Ketika para peserta ditanya dalam pendapat mereka apa
metode yang disukai untuk merekam tes glukosa darah, beberapa peserta
dari status sosial ekonomi rendah dan baik yang bercerai atau janda
ditolak untuk beradaptasi telemonitoring alih-alih lebih suka merekam
secara manual. Ada tanggapan beragam tentang hambatan untuk
mengontrol diet / kalori. Bahkan pasien dengan status ekonomi tinggi, usia
pertengahan 35-50 dan riwayat diabetes 5-

10 tahun dipengaruhi pengobatan alternatif.


Studi ini telah mengidentifikasi kurangnya pengetahuan terkait
diabetes di antara pasien cacat fisik. Pemantauan glukosa darah
swadaya bagaimanapun terbatas, tetapi penggunaan apoteker atau
perangkat seluler dapat meningkatkan praktik tersebut. Juga studi
menyimpulkan bahwa pasien dengan cacat fisik membutuhkan perawatan
yang luas dan strategi yang efektif untuk mengontrol metabolisme glukosa.
Pasien dengan cacat fisik harus dipertimbangkan sebagai populasi khusus
dan profesional perawatan kesehatan lebih fokus pada peningkatan
pengetahuan dan perilaku pasien daripada

rencana perawatan.
Implikasi praktik pada studi ini adalah 1) untuk mengeksplorasi
perilaku dan praktik pasien terhadap manajemen penyakit di antara pasien
diabetes mellitus tipe-2 yang cacat fisik. 2) Cacat fisik dan gangguan
kognitif adalah hambatan utama untuk mencapai kontrol glikemik yang optimal
dan kepatuhan minum obat. 3) Peneliti mengabaikan untuk mengeksplorasi
perilaku pasien

untuk praktik perawatan diri dan kepatuhan pengobatan dengan cacat fisik.
BAB III
PEMBAHASAN

3.1 Analisis Jurnal 1


a. Judul :
A qualitative study to explore the perception and behavior of patients towards

diabetes management with physical disability


b. Penulis :
Syed Wasif Gillani, Syed Azhar Syed Sulaiman, Mohi Iqbal Mohammad

Abdul, and Sherif Y. Saad


c. Identitas Publikasi :
Diabetology Metabolic Syndrome 9, 58 (https://doi.org/10.1186/s13098-017-

0257-6).

No Kriteria Analisa
1 P Dalam jurnal ini problem atau masalah yang
(Problem & ditemukan adalah hambatan kepatuhan
pengobatan dengan populasinya adalah pasien
Patient)
diabetes tipe-2 yang dirujuk ke unit diabetes di
Saghes, Khurdistan sebanyak 12 partisipan (7 wanita
dan 5 laki-laki), berusia antara 30 -

78 tahun.
2 I - Pengambilan sample dengan metode
(Intervention) purposive sampling digunakan dengan variasi
maksimum dalam pengambilan sampel dan
pengumpulan data dilanjutkan sampai saturasi
data tercapai. Pengumpulan data menggunakan
wawancara semi terstruktur. Wawancara direkam
dan ditranskrip secara verbatim.

- Dari 12 partisipan terdapat 4 pasien


yang menggunakan insulin dan sisanya
menggunakan pil penurun glukosa.
- Merupakan penelitian kualitatif
menggunakan metode analisis konten konvensional.
3 C Pada jurnal tidak ditemukan suatu
(Comparasion) perbandingan intervensi, hanya ditemukan
perbedaan terkait penggunaan medikasi yaitu 4
pasien menggunakan insulin dan sisanya
menggunakan pil penurun glukosa. Perbedaan
tersebut tidak digolongkan dan dibedakan

untuk diobservasi.
4 O Kurangnya kepercayaan pada tim medis
(Outcome) dan pengalaman unik masing-masing pasien dan
tantangan dalam kehidupan sehari-hari, adalah
hambatan untuk kepatuhan terhadap pengobatan
pada pasien dengan diabetes tipe 2. Oleh karena itu,
selain mencoba untuk mendapatkan kepercayaan
pasien, tim medis harus fokus pada merancang
program perawatan khusus untuk setiap pasien
berdasarkan pengalaman hidup mereka dan peran
serta tantangan unik dalam kehidupan untuk
meningkatkan kepatuhan mereka

terhadap pengobatan

Pada jurnal telah dijabarkan aspek penting dalam penelitian, hanya saja
ada bagian yang menjadi perancu pada penelitian tersebut yaitu adanya
perbedaan penggunaan medikasi. Hal ini tidak dijelaskan apakah perbedaan
tersebut dapat

mempengaruhi hasil penelitian atau tidak.

3.2 Analisis Jurnal 2


a. Judul :

0257-6).
A qualitative study to explore the perception and behavior of patients towards

diabetes management with physical disability


b. Penulis :
Syed Wasif Gillani, Syed Azhar Syed Sulaiman, Mohi Iqbal Mohammad

Abdul, and Sherif Y. Saad


c. Identitas Publikasi :
Diabetology Metabolic Syndrome 9, 58 (https://doi.org/10.1186/s13098-017-

0257-6).
No Kriteria Analisa
1 P Dalam jurnal ini problem atau masalah yang
(Problem & ditemukan adalah hambatan kepatuhan pengobatan
ditinjau dari pemahaman tentang perilaku partisipan.
Patient)
Populasinya adalah pasien diabetes tipe-2 dengan cacat
fisik (lengan yang diamputasi dan/atau kaki) yang
berusia 18 tahun keatas dengan rata-rata usia
antara 35-67 tahun, sebanyak 21 partisipan.
Populasi mewakili 3 kelompok

etnis utama Malaysia (melayu, cina, dan india).


2 I - Pengambilan sample secara acak
(Intervention) sistematik, rekrutmen berdasarkan saran dokter.
Partisipan adalah pasien yang datang ke klinik
diabetes. Kriteria eksklusinya adalah pasien
dengan kanker, kehamilan, gangguan radang atau
gangguan kognitif.

- Pengumpulan data menggunakan wawancara dan


ditranskrip secara verbatim. Karena sejumlah
besar peserta yang berasal dari kelompok etnis
Melayu wawancara dilakukan dalam bahasa
Malaysia lokal (n = 18). Wawancara dilakukan dalam
bahasa Inggris di mana hambatan bahasa tidak
menjadi perhatian (n = 3). Metode back
translate digunakan untuk melaporkan kutipan
wawancara bahasa Malaysia setempat untuk
memastikan konsep diterjemahkan dengan benar.
Tiga asisten peneliti, satu dari masing-masing
etnis (Melayu, Cina, India) dilatih untuk
melakukan wawancara.

- Dari 12 partisipan terdapat 4 pasien


yang menggunakan insulin dan sisanya
menggunakan pil penurun glukosa.

- Merupakan penelitian kualitatif


menggunakan metode analisis konten konvensional.
3 C Pada jurnal tidak ditemukan suatu
(Comparasion) perbandingan hanya ditemukan
intervensi,
penggunaan perbedaan terkait bahasa saat
melakukan wawancara sesuai
bahasa yang
dipahami partisipan.
4 O Studi ini telah mengidentifikasi kurangnya pengetahuan
(Outcome) terkait diabetes di antara pasien cacat fisik.
Pemantauan glukosa darah yang sangat terbatas,
penggunaan apoteker atau perangkat seluler dapat
meningkatkan praktik tersebut. Peneliti menyimpulkan
bahwa pasien dengan cacat fisik membutuhkan
perawatan yang luas dan strategi yang efektif untuk
mengontrol metabolisme glukosa. Pasien dengan cacat
fisik harus lebih berfokus pada peningkatan
pengetahuan dan perilaku pasien

daripada rencana perawatan.

Pada jurnal tersebut aspek penting dalam penelitian sudah dijabarkan


dengan baik. Ada beberapa hal yang kurang dispesifisikkan yaitu
terkait jenis wawancara yang digunakan. Pada naskah hanya dijelaskan
terkait metode dan

lama wawancara.
BAB IV
KESIMPULAN

Pada bahasan jurnal yang berjudul “A qualitative study to explore


the perception and behavior of patients towards diabetes management with
physical disability” memberikan hasil bahwa kurangnya kepercayaan pada
tim medis, keyakinan salah pasien, dan pengalaman unik pasien serta
tantangan sehari-hari mencegah kepatuhan total terhadap pengobatan. Terlepas
dari rekomendasi yang diberikan oleh tim medis, para peserta tidak memiliki
kepercayaan yang cukup pada mereka, dan dalam kebanyakan kasus, mereka
melakukan apa yang mereka

anggap tepat.
Horvat et al (2018) menemukan bahwa usia, jenis pengobatan, dan
pembayaran adalah prediktor paling penting dari ketidakpatuhan pengobatan.
Studi Sweileh (2014) menggambarkan kondisi ini sebagai kurangnya
kesadaran dan pengetahuan tentang diabetes sebagai faktor yang
berkontribusi terhadap kepatuhan terhadap pengobatan. Dalam penelitian
ini, masalah kurangnya

kesadaran tampaknya dikupas dan diobservasi.


Studi Gillani et al (2017) pada jurnal ke 2 dijelaskan bahwa
ketidakpatuhan diakibatkan karena kurangnya pengetahuan dan perilaku pasien.
Perilaku pasien dapat didukung dengan manajemen diri yang baik. Moodley &
Rambiritch (2007) menjabarkan bahwa manajemen diri dianggap sebagai
bagian penting dari perawatan diabetes. Juga, pengetahuan, kesadaran adalah
senjata terbesar dalam memerangi diabetes mellitus yang mungkin membantu
penderita diabetes untuk memahami risiko penyakit, memotivasi mereka untuk
mencari perawatan dan perawatan yang tepat, dan mengatur mereka untuk
menjaga penyakit tetap

terkendali.
Ulasan dari beberapa artikel tersebut secara tidak
langsung ketidakpatuhan dipengaruhi oleh beberapa faktor. Ketidakpatuhan
terhadap pengobatan pasien DM tipe-2 dapat diakibatkan karena kurang percaya
nya pasien dengan tenaga medis, kesadaran pasien yang kurang baik dan perilaku
pasien yang kurang baik. Perawat harus lebih dapat mengidentifikasi setiap
faktor untuk

memberikan intervensi keperawatan yang tepat.


DAFTAR PUSTAKA

Gillani, S.W., Sulaiman, S.A.S., Abdul, M.M. et al. (2017). A qualitative study
to explore the perception and behavior of patients towards
diabetes management with physical disability. Diabetol Metab
Syndr 9, 58.

https://doi.org/10.1186/s13098-017-0257-6
Horvat O, Popržen J, Tomas A, Kusturica MP, Tomić Z, Sabo A. (2018).
Factors associated with non-adherence among type 2 diabetic patients in
primary care setting in eastern Bosnia and Herzegovina. Primary Care
Diabetes.

2018;12(2):147– 154
Moodley L, Rambiritch V. (2007). An assessment of the level of
knowledge about diabetes mellitus among diabetic patients in a
primary healthcare

setting. South Afr Fam Pract. 2007;49(10):16.


Osei-Kwasi, H. A. (2016). Systematic mapping review of the factors
influencing dietary behavior in ethnic minority groups living in Europe:
A DEDIPAC study. International Journal of Behaviotal Nutrition and
Physical Activity,

13 (1). Doi: 10.1186/s12966-106-04412-8


Rezaei, M., Valiee, S., Tahan, M., Ebtekar, F., & Ghanei Gheshlagh, R.
(2019). Barriers of medication adherence in patients with type-2
diabetes: a pilot qualitative study. Diabetes, metabolic syndrome and
obesity : targets and

therapy, 12, 589–599. https://doi.org/10.2147/DMSO.S197159


Smeltzer S. C. & Bare, B.G. (2008). Brunner & Suddarth’s Textbook of Medical

Surgical Nursing. Philadelphia, Lippincott- Raven Publishers


Sweileh WM, Sa’ed HZ, Nab’a RJA, et al. (2014). Influence of patients’
disease knowledge and beliefs about medicines on medication
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Diabetes, Metabolic Syndrome and Obesity: Targets and Therapy Dovepress
ope n ac ce ss t o sc i e nt i fic and me dic a l re se a rc h

Open Access Full Text Article ORIGINAL RE SEARCH

Barriers of medication adherence in patients


with type-2 diabetes: a pilot qualitative study
This article was published in the following Dove Press journal:

Diabetes, Metabolic Syndrome and Obesity: Targets and Therapy

Mehdi Rezaei 1

Sina Valiee2
Mohammad Tahan3

Fariba Ebtekar4
Reza Ghanei Gheshlagh2
1
Department of Social Sciences,
Payame Noor University (PNU),
Tehran, Iran;
2
Clinical Care Research Center,

Kurdistan University of Medical


Sciences, Sanandaj, Iran; 3Young
Researchers and Elite Club, Birjand
Branch, Islamic Azad University,
Birjand, Iran; 4Department of Midwifery,
School of Nursing and Correspondence: Reza Ghanei Gheshlagh Clinical Care Research Center, Kurdistan University of
Medical Sciences,
Midwifery, Kurdistan University of
Pasdaran Ave, Sanandaj 6618634683, Iran Tel +98 914 405 0284
Medical Sciences, Sanandaj, Iran Email Ghanei@muk.ac.ir
lived experiences of the disease, challenges of everyday life, and interactive/economic
Background: Patients with type-2 challenges. The main inhibitors were the patient’s understanding of his/her own physical
diabetes have poor adherence to the status and strategies used for maintaining the internal balance. Healthcare providers need to
therapeutic regime. It can result in take patients ’ perceptions into account when they are prescribing medicinal diets. Another
various complications in body systems inhibitor was the incidents of everyday life, including economic and social challenges, and
associated with undesirable metabolic interactions to receive education and skills for living with the disease.
control.
Conclusion: Beliefs of the medical team and patients should be brought closer to each
Purpose: The present study aimed other, and patients ’ trust in the medical team should be increased. Nurses should consider
to explore the inhibitors of the unique experience of every patient when giving healthcare recommendations, and try to
medication adherence in patients with limit the existing challenges as much as possible.
type-2 diabetes.
Keywords: medication adherence, diabetes mellitus, content analysis
Patients and methods: This was a
qualitative study using a conventional
content analysis method. Participants
were 12 patients with type-2 diabetes
referred to the diabetes unit in Introduction
Saghez, Kurdistan Province in 2015.
The purposive sampling method was Diabetes is a silent epidemy that affects 3.8% of the world’s population.1 More
used with a maximum variation in than 4 million people in Iran suffer from diabetes, and it is expected to reach 6
sampling, and data collection was million due to population aging, increasing prevalence of obesity, and lifestyle
continued until data saturation was
and dietary changes.2,3
achieved. Semi-structured interviews
were used for data collection. Diabetes mellitus affects all aspects of the person’s life.4 Management of
Interviews were recorded and diabetes requires a complex treatment regimen and lifestyle changes to improve
immediately transcribed verbatim.
adhere to treatment.5,6 Behavioral changes are the basis of treatment for chronic
Results: Data analysis led to the diseases, and failure to adhere to treatment is a common problem in patients with
development of four main categories type-2 diabetes.7 Similar to patients other with chronic conditions, patients with
including disbelief in medical diabetes have poor adherence to treatment. For instance, out of 17 chronic
explanatory/prescriptive knowledge, diseases, diabetes is in the

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second rank in terms of low adherence to people.18 The present study was conducted using a
treatment. Therefore, diabetes is the second leading cause qualitative approach to explain adherence to treatment in
of hospita- lization due to non-adherence to treatment.8,9 patients with diabetes in Saghez, Kurdistan province,
Iran. Like all other societies,
Adherence behaviors in patients with type-2
diabetes include five categories: adherence to
medication, dietary recommendations, increased physical
activity, self-control of blood glucose, and proper care
of legs.8 Failure to adhere to the therapeutic regimen
accelerates the compli- cations of diabetes.10 In a
study by Osborn et al, the prevalence of adherence to
oral glucose-lowering drugs was 36–87%, and
prevalence rates ranging from 54% to 81% were
reported for adherence to insulin alone or insu- lin and
glucose-lowering drugs.11 In a study by Delamater et al,
adherence to physical activity and diet was found to be
19% and 65%, respectively, and only 5% of the patients
taking glucose-lowering oral pills monitored their
blood sugar in a daily manner.12 A review study by
Mashrouteh et al showed that the prevalence of treatment
adherence in Iranian patients with diabetes varied from
37.2% to 87%.13 In addition, Ho and Boye found
prevalence rates of 21.3% and 36.9% for treatment
adherence, respectively.14,15

In a qualitative study among patients with diabetes


in Qatar, Jaam et al found three categories of factors,
includ- ing patient-related factors, patient-provider
factors, and societal and environmental factors as
barriers to treatment adherence.16 In another study, poor
medical team perfor- mance, social dilemma, and
personal distress were identi- fied as factors preventing
treatment adherence among diabetic patients. 17

Given that in quantitative studies only pre-


determined dimensions of a phenomenon are specified,
qualitative stu- dies can be useful in assessing
concepts like treatment adherence that may be influenced
by many unknown, con- text-dependent factors. In
qualitative studies, a relatively more comprehensive
discovery of the phenomenon of inter- est is performed.
Qualitative studies are also useful for the completion and
restoration of knowledge gained using quantitative
approaches, through exploration of experiences and
perspectives of individual participants. In other words, the
phenomenon of interest is studied from the perspectives
and experiences of the people involved.

The individuals’ interpretations take priority, and


efforts are made to link them to the social context. It means
that the disease is analyzed through the person’s way of
life, experi- ence of the world, and interaction with other
Rezaei et al Dovepress

Methodology
the community under the study has its own culture, includ-
ing a particular nutritional style (high consumption of bread, This was a qualitative study with the purpose of
sugar, fat, and rice), lack of appropriate exercise for main- explaining low adherence to treatment in patients with
taining or improving health, gender norms putting women type-2 dia- betes. Participants were selected from patients
in a lower status than men, presence of economic issues, with type-2 diabetes with medical records in the
and a high unemployment rate. diabetes center of Saghez, Kurdistan province, Iran.
Participants were selected using a purposeful sampling
Considering the important role of nurses in providing
method until reach- ing data saturation. The research
care for these patients and the relationship they have with
environment was the diabetes center of Saghez as the
them, identification of barriers to treatment adherence can
second most populous city in Kurdistan province,
be useful in prevention and control of the complications of
inhabited by Kurds practicing Sunni Islam. Twelve
diabetes, and can ultimately reduce hospital admissions,
participants (7 women and 5 men) aged between 30
treatment costs, and mortality rates among patients. The
and 78 years were recruited. Four patients used
researcher who had worked in clinical settings and
insulin to control their disease and the rest used glucose
observed non-adherence to treatment among patients,
lowering pills. After coordinating with the participants,
sought to investigate the causes of it from the perspectives
interviews were conducted at the diabetes center in a
of the patients themselves. She also sought to understand
quiet room. The demographic description of the
the rationale for nonadherence to treatment and the related
participants is shown in Table 1.
individual and social conditions influencing adherence/
non-adherence to treatment. So, she had the following After obtaining permissions from the health and
questions in mind: treat- ment center authorities, the study objectives and
processes were described to the participants. Their
1. Why patients with type-2 diabetes do not adhere to consent for parti- cipation in the study and their
their therapeutic regimen? permission to tape-record the interviews were obtained.
2. How do they interpret this non-adherence? In this study, the main method of data collection
was in-depth and semi-

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Table 1 Demographic description of the participants

Code Age Gender Duration of the disease Education Type of Medicine

P1 78 Female 24 Illiterate Insulin

P2 48 Male 8 Illiterate Oral medicine

P3 55 Female 14 Illiterate Insulin

P4 50 Female 10 Illiterate Oral medicine

P5 52 Female 12 Primary Oral medicine

P6 55 Male 7 Illiterate Oral medicine

P7 48 Female 11 Primary Oral medicine

P8 58 Male 20 Intermediate Insulin

P9 60 Male 18 Academic Insulin

P10 45 Female 9 Illiterate Oral medicine

P11 43 Female 8 Intermediate Oral medicine

P12 35 Male 3 Intermediate Oral medicine

structured interviews, because it is related to a understand participants ’ everyday lives as they are.20
19
higher flexibility and more depth of data collection. A conventional content analysis method was used to
The inter- views were conducted by the corresponding analyze the data. This method is used to interpret the
author who had received adequate training on content of textual data.21 Data analysis was
conducting qualitative interviews and studies during performed alongside the interviews, based on the
his PhD studies. Before beginning the interviews, method suggested by Lundman and Graneheim:
several pilot interviews were conducted, and the 1) transcription of the entire interviews as
interview guideline was reviewed and modified by the
research team. This study was conducted in accordance
with the Declaration of Helsinki and written informed
consent was provided by the participants. The
interviews began with a general and open question,
“How did you find out that you had diabetes?” The
participants were asked about the medical centers
they had been referred to for controlling their illness,
the recommenda- tions they had received, the problems
they had encoun- tered in following the
recommendations, and the factors making them unable
to follow treatment recommenda- tions. The interviews
lasted between 20 and 40 mins, with an average of
30 mins (Supplementary material). The interviews were
performed individually in the coun- seling room of the
diabetes center. All the interviews were recorded and
immediately transcribed verbatim. The pre- sent study
had a qualitative design. Qualitative studies explain
people’s experiences in everyday life. In a quali- tative
study, the researcher does not influence the study
environment, and only tries to recognize and
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The Lincoln and Guba’s criteria (credibility,


quickly as possible; 2) reading the entire interview tran- dependabil- ity, conformability and transferability) were
script to get an overall understanding of the content; 3) used for rigour. Credibility was achieved through
determination of manifest units and primary codes; 4) maximum variation in participants, age, disease
classification of similar codes to more comprehensive
duration, financial status, and social status. To eliminate
categories; and 5) determining the latent content.22 For any ambiguity during the coding process, the interview
immersion in the data, the researcher listened to the inter- transcripts and the related coding were presented to
views several times, and reviewed the transcriptions and the participants to find similarities between the
the related recordings. Interview transcriptions were read participants ’ and researchers ’ perspectives, and
line by line, words and phrases related to the study objec- improve convergence between the study findings and the
tive were identified, and original codes were extracted. All lived experiences of the participants. Dependability was
the codes were discussed with the other members of the achieved through collecting data regularly, recording
research team, and if they were confirmed, the next stage and writing the steps and trends of the study, and
of coding would be conducted. Subsequently, similar checking the stability of findings by colleagues who were
codes were conceptually conceptualized and classified
familiar with qualitative studies.
into categories. Next, the corresponding categories led to
the development of latent contents and concepts. Ethical considerations included obtaining permission
from authorities to enter the healthcare network,
obtaining

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the informed consent of the participants, use of


nicknames instead of actual names to ensure anonymity, Lack of trust in medical
keeping the confidentiality of the data, and possibility of explanatory/ prescriptive knowledge
withdrawal at any time without being penalized.
It was found that the patients with diabetes did not have a
deep understanding of the medical knowledge on diabetes
in many aspects, and had little faith in doctors ’
Results prescrip- tions and recommendations. They took
The participants included 12 people with type-2 diabetes medications based on their judgment of their physical
(7 women and 5 men). The mean age of the participants condition. According to their comments, they did not
and the mean duration of diabetes was 52 years and believe in the doctors ’ advice and medical science. They
12 years, respectively. The codes extracted from the considered doctor’s recommen- dations nothing than
interviews were divided into 8 subcategories and 4 main “words”, which rooted in a “lack of knowledge” of
categories. According to the results, the barriers to treat- scientific facts about diabetes. They were unaware of the
ment adherence among diabetic patients were as follows: true causes of diabetes and instead believed in superstition
Lack of trust in medical explanatory/prescriptive knowl- or had misconceptions about their illness. They accepted
edge, lived experiences of the disease, challenges of recommendations or interpretations from their family
everyday life, and interactive/economic challenges members or other patients with diabetes rather than
(Table 2). physicians. For example, one of the participants said:
“Some people say: ‘Don ’t inject insulin as you ’ll get
used

Table 2 Categories and subcategories developed during the data analysis

Main category Subcategory Primary category

Lack of trust in medical Folk beliefs ● Misconceptions about diabetes


explanatory/pre- scriptive knowledge
Non-adherence to therapeutic ● False beliefs

regimen ● Ignorance

● Self-medication

● Voluntary disorganization of drug use


consumption based on self-perception

● Mouth bitterness
Knowledge, lived experiences of the disease
Medication side effects; ● Blurred vision

Physical challenges ● Tremor


● Itching

● Knee pain

● Arthritis

● Dyspnea

● Obesity
● Sadness

● Discomfort
Challenges of everyday life
Mental/psychological stress; ● Disappointment
Preoccupations of the everyday life ● Fear of the future
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● Nervousness
● Heavy homework

● Housekeeping affairs

● Daily activities

● Being ignored by family members


● Lack of support from family

● Marital conlicts
Interactive/economic challenges Lack of empathy/behavioral ● Lack of skills
afiliation; Weakness/inancial
dependence ● Financial strain

● Impoverishment

● Financial dependence

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to it ’. I didn ’t follow their recommendation to and may lead to irrever- sible physical impairments. On
receive insulin ” (Participant 1). the other hand, medications
Patients with diabetes also did not adhere to their
medica- tions, because of the above-mentioned beliefs,
having mis- understandings or misperceptions
about medical prescriptions, or lack of knowledge
about how to use their medication. Taking medication was
dependent on their con- dition rather than doctor’s order.
One participant, a 50 year- old woman, said: “Every time
my blood glucose goes up, I sweat a lot, then I know
that my blood sugar is high, and I take two or three
pills. ” (Participant 4). Therefore, while neglecting the
medical instructions, the patient deliberately uses this
neglect to fulfill their own desires. It means that after
overusing sugary foods (due to excessive appetite or
inability to refrain from delicious foods), they prescribe
a certain dose of medicine for themselves to prevent the
harm- ful effects. A 60 year-old male diagnosed with
type-2 dia- betes more than 7 years ago, said:

“I inject insulin to eat sweets and candy as much as


I want. I know that I’ll have troubles after eating
sugary foods. That why I raise my medication
doses. I know myself well. ” (Participant 6).

Lived experiences of the disease


It means that the patient with diabetes experiences physical
or mental problems, which are the results of the treatment
of diabetes. On the other hand, these experiences may
result from specific physical conditions that are separate
from diabetes and result for other chronic conditions,
such as arthritis, hyperlipidemia, shortness of breath,
hypertension, and so on. An individual with diabetes has
to take several pills and inject insulin to control their
blood glucose levels. Patients with diabetes have to cope
with unpleasant physical conditions that may not have
been present before. This inconvenience is not
permanent, however it is unbearable for some patients,
and interferes with their normal life. Therefore, the
patient violates the prescribing process. These
experiences greatly affectthe quality oflife of patients, and
increase the likelihood of medication discontinuation.
From the perspective of patients, the medication side
effects are more problematic than the treatment itself. A
participant said: “Sometimes I take a pill, it nauseous, I
get sad, my bodygets itching so bad thatI want topill if
of, ” (Participant 12). Therefore, the patient experiences
a behavioral and functional conflict. Non-adherence to
prescription causes changes in the blood glucose levels,
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An important issue is self-management, which is


may have side effects interfering with the patient’s daily life. also important from the patients ’ perspectives.
In this regard, the person with diabetes must choose between
taking and not taking medications. Occasionally, by chan- “Sometimes I try to avoid blood sugar spikes by
ging the type or dosage of medications, diabetic patients try avoiding eating. That why I use less pills. ”
to manage the side effects. (Participant 7).

“I change the dose of medications to reduce the severity of


discomfort. For example, if I need to take two pills a day, I
reduce it to one to experience less discomfort. Nausea Challenges of everyday life
makes my life bitter ” . (Participant 5).
Similar to other people in the community, those with
Given that the majority of patients with diabetes are older type- 2 diabetes are involved in the everyday life.
adults, they also experience other chronic conditions. The Occupation, interaction with children, marital duties,
experience of these conditions undoubtedly increases the caring for a dis- abled spouse, neuropsychological
burden of the disease on the patient, and inevitably leads and emotional
to more pain and suffering, exacerbates the effects of
diabetes, and prevents the effectiveness of the treatment.

“I have hypertension and diabetes, my shoulders ache,


and I have asthma. Due to these problems, I shouldn ’t
walk very much, but I can go everywhere. The doctor
said that I shouldn ’t walk, because it could make my
arthritis worse. She said “walking was prohibited for
me ” (Participant 2).

Hypertension, diabetes, and dyspnea have concurrent


effects that interfere with the treatment of each condition.
Therefore, the patient with diabetes experiences a very
specific condition that actually challenges health manage-
ment. It is sometimes necessary to give up the manage-
ment of one condition in favor of treating other conditions.

“I can ’t walk a lot, because of the shortness of breath.


That is why I’m always worried about my hypertension.
Diabetes is worse than ever. I say to myself that it okay
and the pills can control my blood pressure, it not that
bad, sometimes I don ’t take my blood glucose pills … It
better than experiencing shortness of breath in the street.
Honestly, I don ’t know which condition I should take care
of ” . (Participant 2)

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disturbances caused by life events, work environment Diabetic patients may be faced with interactive
etc. all can affect the lives of diabetic patients. If chal- lenges before anything else. For example, the doctor
patients experience stressful conditions, their treatment is advises
undoubt- edly influenced.

“Sometimes I’m so worried about providing for my


family that Iforget to check my blood sugar and take my
medica- tions. Sometimes experiencing a psychical
problem has reminded me that I should take my drugs.
” (Participant 7)

One of the participants diagnosed with diabetes from


a young age said:

“ When I got married, because of my lifestyle,


including overeating and insulin injections and due to
my deterior- ating health, my wife could not live with
me and left me. Now I’m over 50 years old and
single. I live with my brother. My bad situation is due
to this deadly disease. It has destroyed my life … I
often put aside all of my medications, but I inevitably
go to them, due to my bad health condition ”
(Participant8).

There is no doubt that severe diabetes can deprive


patients from some social and financial opportunities,
therefore causing them too much stress.

“My students are so annoying that I sometimes lose


my temper … when I’m teaching, my glucose falls
sharply and I can ’t have the the opportunity in the
classroom to take medications or inject insulin. That
is why I’m going to leave teaching ” (Participant 9).

“Sometimes life problems influence all aspects of your


life. When I’m upset, Iforget myself, it doesn ’t matter if
my heart- beat goes up orI become obese or thin. ”
(Participant 11).

Interactive/economic challenges
The medication habits of a patients with diabetes must
be observed in the context of his/her social life. Like
any other person in the community, diabetic patients
are involved in their family lives and interact with their
part- ner and children. In many cases, this interaction
may be disturbed by diabetes, behavioral changes,
diabetes treat- ment, and diabetes diet. A patient with
diabetes needs, among other things, a special diet,
emotional relationships that are free of tension, financial
support to afford medica- tions, and behavioral support
to take medications. The family of the patient may not
comply with these require- ments, as they are more
likely to face restrictions.
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undesirable condition and was worried about her


“You have to walk to control your diabetes. ” However, the husband and children, said
patient argues that “ Well, I don ’t have time to walk,
because I have to prepare breakfast for my husband and “I don ’t want to pursue my treatment; I don ’t want to
child every morning ” (Participant 3). In such a condition, take my medications regularly. My husband is unhappy
daily social interactions are barriers to the non-medical care with my condition, and always teases me. I get upset.
of a patient with diabetes. In terms of nutrition, the patient My life is broken. He says because I’mill they will also
may realize that “I’m not alone in the family. My kids and get ill, as he thinks that diabetes is contiguous ”
(Participant 10).
my husband may not be able to eat my food. I can ’t
make food only for myself, and the rest of the family
In addition to emotional needs, a patient with diabetes
should also eat; I shouldn ’t eat anything unless the whole
may get dependent on others, such as their partner or
family can eat it ” (Participant 5). As a consequence of
children. An old person with diabetes may no longer have
these interactive and behavioral pressures, patients with the ability or skill to inject insulin or even recognize
diabetes often fail to follow medical instructions, and try to medications. Dependence on others for injection of insulin
compensate for their non-adherence to treatment through may particu- larly affect medication use in the patients. For
changing their medication, its dosage, or its time of use. example, when a patient is not able to inject insulin
Perhaps the most important interaction in the family independently after having diabetes for eleven years, it
that a patient with diabetes has is with their partner. The may indicate that they do not have the required skills: “I
interaction between a diabetic patient and their partner is don ’tknowhow to inject my insulin, Iwait for my
definitely an important part of adherence to treatment. daughter to inject it. ” (Participant 1).
Looking at a patient with diabetes as a disturbing agent Patient with diabetes also face the challenge of
or burden on the family instead of considering them as paying for treatment costs. For instance, a patient who
someone who needs physical and psychological support cannot pay for high quality medications due to financial
has negative influences on the quality of life, daily perfor- strain, becomes dependent on others to pay for
mance, and most importantly psychological health of the medications. According to a participant: “It’s in the
patient. A diabetic patient who perceived her family in an hands of others” to provide my

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medications. Poverty, financial strain, or having enough information on diabetes, and that part of the
inadequate insurance coverage make it more difficult information provided to them was unclear or not
for diabetic patients to adhere to treatment. For easy to remember, or that they were not
example, buying a glucometer and other medications or
having routine medical tests require at least an average
financial status. Drug pre- paration is “hard” for those
with diabetes, especially for low-income patients:

“Sometimes it hard forme to get a drug. My son who is


a laborer and is currently the breadwinner in the
family, is under financial pressure. My medications
are too many and expensive. Honestly, sometimes I
can ’t afford them. That why I sometimes don ’t
take my medications. ” (Participant 7).

In such a condition, it becomes harder for the patient


to bear financial and economic burdens. Patients with
dia- betes may also become dependent on others for the
provi- sion of treatment, while they may also experience
financial problems.

Discussion
The purpose of this study was to investigate the barriers
of adherence to treatment among patients with type-2
diabetes.

The study results showed that lack of trust in


the medical team, patients ’ false beliefs, and patients ’
unique experiences and daily challenges prevented
complete adherence to treatment.

Despite the recommendations provided by the medical


team, the participants did not have sufficient trust in them,
and in most cases, they did what they themselves consid-
ered appropriate. Meanwhile, the opinions and beliefs
of others and their experiences with medication use were
the main factors influencing the therapeutic regimen
among participants. The participants said that they took
medica- tion according to their physical requirements.
In such a situation, based on folk and personal beliefs,
the patient challenges the medical nature of the illness
and the pre- scriptions made by a doctor. This patient
thinks that doc- tors “only talk” and “don’t understand
their condition” .

Horvat et al found that age, type of treatment,


and copayment were the most important predictors of
treat- ment non-adherence.23 The Sweileh’s study
described this condition as lack of awareness and
knowledge about dia- betes as a factor contributing to
adherence to treatment.24 Also, Vermeire et al found that
patients with diabetes felt that they had not received
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One of the other reasons for non-adherence to


provided with information at an appropriate time.25 In this treat- ment was having other chronic conditions in
study, the problem of lack of awareness appears not to be addition to diabetes. In addition, the problem of
the same as the concept explained by previous studies. In accepting the “dis- ease”, which may lead to resistance
other words, although adequate information on the serious against treatment and difficult physical and
consequences of diabetes was provided for the partici- psychological experiences with the disease, in many
pants, in most cases, other people’s beliefs about the cases prevent diabetic patients from tak- ing their
nature of the disease, how to use medication, and medica- medications properly. The side effects of certain diabetes
tion side-effects, determined the level of treatment adher-
medications result in disgust toward medications, increase
ence in the diabetic patients.
the likelihood of medication discontinuation, and change
In some cases, patients with diabetes act as they want the pattern of medication intake. These findings are in line
and based on what they find useful. In line with the with those of the study by Sweileh, in which the
findings of other studies, this was particularly observed experience of medication side effects and the
among patients taking insulin. In the Hertz’s study (2005), simultaneous use of several medications led to non-
the onset of insulin therapy was associated with a lack of adherence to treatment.28,29 The present study
adherence to the therapeutic regimen.26 In a study by demonstrated the chal- lenges faced by patients with
Adisa et al (2013), insulin-dependent patients were less diabetes in experiencing a range of other chronic
likely to follow the diets recommended by their doctors conditions. Being stuck in a vicious cycle of coping with
compared to those receiving oral tablets.27 Diabetes nurses different conditions, while the treat- ment of each
and medical teams should pay more attention to patients ’ condition affects the course of other condi- tions, can
beliefs, and try to correct their false beliefs and increase disturb the treatment of diabetes. The common age-
their treatment adherence by respecting their cultural related conditions, such as knee arthritis, hyperten-
values. In addition, holding sessions aimed at establishing sion, hyperlipidemia, and spinal cord problems often
a close relationship between patients and the medical team wor- sen the complications of diabetes medications and
and talking about patients ’ beliefs can be helpful in over- cause the patient to change the prescribed medications.
coming this serious barrier to treatment adherence. Diabetes

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can have different physical and pharmacological compli-


cations in different people. Any person can experience family requests. In a study by Morovati Sharifabad
diabetes in a specific way, and this unique experience (2007), blame from family members can make diabetic
influences people’s treatment adherence. Therefore, the patients hopeless and reduce their ability to engage in
medical team should analyze the unique experience self-care behaviors. 3 4 In a study by Mayberry and Osborn
of each patient, and provide customized health care (2012), a group of family members of diabetic patients
recom- mendations in addition to general ones. did not support their patients despite having knowledge
Everyday life challenges are among serious barriers to of diabetes (a tedious strategy), and another group unin-
treatment adher- ence in diabetic patients. The stress tentionally intervened in their diet (the strategy of
resulting from these challenges can reduce treatment helplessness). 3 5 Because diabetes affects the families in
adherence in the patients. Every patient has some roles addition to the patients, families of the patients should
and commitments that can also affect their ability to also be supported, and empathy among family members
adhere to treatment. should be reinforced. However, the most important pro-
blem can be financial challenges in obtaining diabetes
Type-2 diabetes not only leads to physical and hormo-
medications. In a qualitative study in Bangladesh by
nal problems in the patients, but may also become a social
Islam et al, fi nical limitation was an important cause of
issue, because the patient has interactions with other peo-
non-adherence to treatment. This pressure is definitely
ple and is engaged in daily life activities. Therefore, the
higher for the families who suffer from severe economic
conditions and challenges of everyday life, influence dia-
poverty. In addition, financial dependency makes the
betic patients ’ interactions with their illness and the
situation more difficult for the patient, especially when
treat- ment process. The findings of our study are in
the diabetic patient is a woman who is dependent on her
line with those of other studies on mental problems and
husband or children. Low financial status may force dia-
psycholo- gical health.30,31 In addition, stressful life
betic patients to stop taking medications, reduce their use,
events and depression11,32 and their implications affect or take medications with a lower quality. According to
adherence to treatment in patients with type-2 diabetes. the findings, financial strain in the family can prevent the
Other studies have suggested that the more stressful provision of required medications for controlling dia-
events experienced by the patient, the higher the chance betes. This is undoubtedly more challenging for those
of non-adherence to treatment, and that depression and patients who have other underlying conditions. These
stress can lead to reduced adherence to treatment.32,33 findings were consistent with those of Edessa et al
When caring for these patients, their roles in everyday about the role of financial weakness in adherence to diet
life should be ade- quately examined, and any
therapy.36 Balkrishnan et al (2003) found that 10%
interference in the treatment adherence should be
increase in adherence to diet therapy was associated
resolved through careful planning to find a balance
with a one-fourth reduction in treatment costs. 3 7
between these two. Family participation and the support
Diabetes and its treatment can affect patients and their
they can provide for the patients, especially when they
families financially. These financial challenges may pre-
experience psychological problems is also of high
vent adherence to treatment. Providing support for those
importance.
patients with financial problems and introducing them to
In the present study, the category of everyday life charitable organization can solve their problems to some
problems was separated from interactional and financial extent. In terms of non-adherence to treatment, Bezie
challenges, but they are not separate from one another in (2006) suggested that physicians should talk to the
the real life. Part of the challenges faced by patients with patients on how to follow treatment recommendations
type-2 diabetes in everyday life, especially by women, is rather than prescribing a second drug or changing the
related to other family members, including husbands. current medications.38 If doctors spend more time with
Failure to play her role inside the family, and lack diabetic patients, they will have the opportunity to dis-
of behavioral and emotional support from a wife with cuss their health problems more conveniently. However,
dia- betes can certainly increase her concerns in the it should also be pointed out that physicians and nurses
life, therefore she may prefer to maintain the current should pay more attention to the patients ’ knowledge
situation. A woman with diabetes has to change the of their own bodies. Diabetic patients understand
diet recom- mended for her condition based on what their
her husband or children desire, and make food
according to what the
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bodily internal forces better than any other person, and


they themselves can fi nd a balance between taking med- Conclusion
ications and managing their everyday life. “Balancing the Lack of trust in the medical team and each patient’s
body” is what patients themselves understand better. unique experiences and challenges in everyday life, are
Finding a balance on the basis of the requirements of barriers to adherence to treatment in patients with
every life, financial concerns, and physical needs, may diabetes type 2. Therefore, in addition to trying to gain
not be easily accepted by a physician or a nurse, but is the patient’s trust, the medical team should focus on
understandable by the patients themselves according to designing a particular care program for each patient
their perspectives. based on their lived experi- ences and unique roles and
According to the findings of this study, these barriers challenges in life to increase their adherence to
are inseparable from one another and sometimes are treatment.
strongly intertwined. A patient’s lack of knowledge on
diabetes management can be improved through receiving
support from competent and knowledgeable family mem- Acknowledgments
bers. A calm atmosphere in the family and the presence
The authors wish to sincerely thank all patients with
of social capital within the family (including trust and
dia- betes who participated in the research, the chairman
support) can reduce stress and ultimately improve adher-
of the health and treatment center of Saghez, and the
ence to treatment in diabetic patients. Family support,
personnel of the diabetes center in this city. The study was
interactively and economically, can certainly contribute conducted without any external funding.
to reducing the pressure on the patients, especially in
older adults with diabetes. It can also reduce the burden
of comorbid conditions on the patient. The strength of
this study was that it was the first study to examine Disclosure
barriers to adherence to treatment among Iranian patients The authors declare no conflicts of interest in this work.
with diabetes. Given the effects of culture on treatment
adherence, the study results can help in deigning appro-
priate intervention programs to increase it among
patients with diabetes. This study was conducted on a
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Please explain how you found out that you had
to treatment? Please explain.
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What resources have you used to control or treatyour illness?
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Gillani et al. Diabetol Metab Syndr (2017) 9:58

DOI 10.1186/s13098-017-0257-6 Diabetology


& Metabolic
Syndrome

RESEARCH Open Access

A qualitative study to explore


the perception and behavior of patients
towards diabetes management with physical
disability
Syed Wasif Gillani1,2*, Syed Azhar Syed Sulaiman3, Mohi Iqbal Mohammad Abdul1,4 and SherifY. Saad5

Abstract

Background: This study aimed to determine self-monitoring practices, awareness to dietary modifcations and
barri- ers to medication adherence among physically disabled type 2 diabetes mellitus patients.

Methods: Interview sessions were conducted at diabetes clinic—Penang general hospital. The invited participants
represented three major ethnic groups of Malaysia (Malay, Chinese and Indians). An open-ended approach was
used to elicit answers from participants. Interview questions were related to participant’s perception towards self-
moni-

toring blood glucose practices, Awareness towards diet management, behaviour to diabetes medication and cues
of action.

Results: A total of twenty-one diabetes patients between the ages 35–67 years with physical disability (P1–P21)
were interviewed. The cohort of participants was dominated by males (n = 12) and also distribution pattern showed
major- ity of participants were Malay (n = 10), followed by Chinese (n = 7) and rest Indians (n = 4). When the
participants

were asked in their opinion what was the preferred method of recording blood glucose tests, several participants

from low socioeconomic status and either divorced or widowed denied to adapt telemonitoring instead preferred
to record manually. There were mixed responses about the barriers to control diet/calories. Even patients with high
eco- nomic status, middle age 35–50 and diabetes history of 5–10 years were infuenced towards alternative
treatments. Conclusions: Study concluded that patients with physical disability required extensive care
andefective strategies to control glucose metabolism.

Practice implication: This study explores the patients’ perspectives regarding treatment management with
physical disability.
Keywords: Patient education, Counseling, Disease understanding, Diabetes mellitus, Qualitative study

Background Te most recent report by International Diabetes


Fed- eration Diabetes Atlas estimates that there
are cur- rently 387 million people living with diabetes
globally in 2014, a 105% increase from its last report in
2011 with most people living in the western pacifc systematic analysis study on global burden disease ana-
[1]. Recent lysed data from health examination surveys and epi-
demiological studies included data from 2.7 million
participants and 370 country-years reports that a total
of 347 million adults are living with diabetes worldwide
*Correspondence: syedw.gillani@gmail.com
[2]. It is estimated that by 2030 a total of 439 million peo-
ple will sufer from diabetes mellitus, which represents
1
Clinical and Hospital Pharmacy Department, College of approximately 7.7% of the global adult population aged
Pharmacy, Taibah University, Medina, Kingdom of Saudi Arabia
20–79 years [3].
Full list of author information is available at the end of the article
Patients with medication non adherence may
failed to achieve optimal therapeutic outcomes

© The Author(s) 2017. This article is distributed under the terms of the Creative Commons Attribution 4.0 International
License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any
medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative
Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver
(http://creativecommons.org/ publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise
stated.
Gillani et al. Diabetol Metab Syndr (2017) 9:58
Page 2 of
10

[4–6]. Physiologically hemoglobin A1c inversely related nity ignored to explore the patients behavior to self-
to diabetes medication adherence [6]. Several studies care
have determined the link between medication non adher-
ence with higher diabetes related complications, inpa-
tientand emergency department utilizations [3, 7]. Tere
are several factors efecting the glycemic control and
patient adherence to the treatment plan [8, 9]. To achieve
target glycemic control, patients needed to follow multi-
ple care models including self-monitoring blood glucose
(SMBG), Dietary modifcations, exercise, improve diabe-
tes medication knowledge and medication adherence [5,
7].

Disability is a key indicator implicating both overall


morbidity and success of public health eforts to com-
press the period of morbidity among geriatrics for the
overall population. Disabilities are more prevalent among
diabetics than among those without diabetes. Physical
inactivity, obesity, peripheral arterial disease, neuropa-
thy, coronary heart disease and depression contribute
strongly to higher disability risk among diabetic per-
sons. Better management of glycaemia and reduction of
risk factors for cardiovascular disease provide long-term
prevention of disability. Preventing disability will likely
depend on a combination of secondary and tertiary pre-
vention along with diabetes prevention [8]. Common
disabling conditions among people with diabetes in the
United States include arthritis that limits physical activ-
ity, depression, hearing loss, peripheral neuropathy and
visual impairment that limits ability to read regular print
[9]. Improving behaviors of patient and clinician regard-
ing close monitoring of disease control parameters and
timely treatment adjustments might improve quality of
life among patients with multiple comorbidities and com-
plex health care needs [10]. Diabetes-induced disability
rate is increasing due to the fact that the vast majority of
diabetics are living longer. Due to poor medication adher-
ence among diabetic subjects contribute to exaggerated
health cost. Diabetes associated disabilities contribute
to great extend poor adherence to prescribed medica-
tions, since a huge number among diabetics at the time
of diagnosis, have experienced disabilities [11]. Mortal-
ity among diabetics has now been postponed to older age
in most cases; however disability and health loss due to
diabetes is increasing, particularly in the older popula-
tion [12]. Te complexity of self-care often increases as
diabetic subject is growing older. Since eyesight, hearing,
fne motor skills and memory processes are altering with
time resulting in a great impact on the individual’s ability
to comply with self-care practices [13].

Physical disability and cognitive impairments are the


major barriers to achieve optimal glycemic control and
medication adherence. Somehow the research commu-
practices and medication adherence with physical dis-
ability. Tus this study aimed to determine self-moni-
toring practices, awareness to dietary modifcations and
barriers to medication adherence among physically disa-
bled type 2 diabetes mellitus patients.

Methods
Research design

Qualitative method explores the understanding of par-


ticipants’ behavior “how and why people respond to dis-
ease management practices” In addition, such methods
also provide comprehensive answers to diverse questions
from patient oriented barriers to drug related problems.
Te qualitative interview has the fexible nature of explo-
ration that is advantageous to the researcher investigat-
ing knowledge, perception and barriers to respond.

Setting and participants

Interview sessions were conducted at diabetes clinic—


Penang general hospital (2016–2017). Te invited partici-
pants represented three major ethnic groups of Malaysia
(Malay, Chinese and Indians).

Eligibility criteria: patient with physical disability


(amputee arm and/or leg), diabetes type II mellitus and
aged 18 years or above. Recruitment was performed in
suggestion with physicians attending patients at diabetic
clinic (6-months, systemic random sampling). Patients
with cancer, pregnancy, infammatory disorder or cogni-
tive impairment (dementia etc.) were excluded.

Participants did not face any challenges when answer-


ing interview questions during the interview session as
the questions used were simple and straightforward with-
out the use of medical jargons.

Assessment tool

A semi-structured interview guide was used to conduct


the study (Table 1). An open-ended approach was used
to elicit answers from participants. Interview questions
were related to participant’s perception towards self-
monitoring blood glucose practices, Awareness towards
diet management, behaviour to diabetes medication and
cues of action. General probing was used during the
interview sessions to facilitate questions (Can you explain
further? What about your opinion on this? Can you fur-
ther clarify etc.).

Tool development and validation

Te interview probe guide was frst developed after


extensive literature search [10–13] and then discussed
with the experts from both academic and practice ori-
ented personnel. Te purpose to conduct this process
was to merge healthcare providers’ prospective coher-
ently with interview specifc probes. Tis will interest
Gillani et al. Diabetol Metab Syndr (2017) 9:58
Page 3 of 10

Table 1 Interview guide

Discussion topic Examples of specifc probes

Perception towards self-monitoring blood glucose practices In your opinion what is the preferred method of recording blood glucose
reading? Do you think self-monitoring of blood glucose useful for diabetes
management? What stops people for self-care practices?

Awareness towards diet management In your opinion what are the strategies to control diet?

Before you diagnosed (diabetes), have you heard of calorie counting?

Behavior to diabetes medication What type of experiences with diabetes medication usually reduces the people
adher- ence?

Do you aware of other beliefs (lay beliefs) in people that infuence the diabetes
man- agement?

Have you heard of alternative medicines for diabetes?

Cues to action What would you like to suggest improving diabetes management behavior
among other diabetes patients?

public health experts and endocrinologist to follow-up 10-776-6941). Informed consent was obtained from
with research fndings and improve future practices. A all the participants in either English or Malay
pilot study was conducted to pre-test the interview guide languages. Verbal consent was considered from those
but the data is neither presented in this manuscript nor unable to read or write.
added to fnal analysis (sample size of pilot study—n =
8). Data analysis/evaluation

Interview process All the interviews were audiotaped for verbatim


tran- scriptions. All the interviews were
Due to the large amount of participants who are from transcribed by
the Malay ethnic group interviews were conducted in
local Malaysian language (n = 18). Interviews were
conducted in English where language barrier was not a
concern (n = 3). Te back translate method is used to
report the quotes of the local Malaysian language inter-
views to make sure the concepts translated properly.
Tree research assistants, one from each ethnic (Malay,
Chinese, Indian) were trained to conduct the interviews.
On average interview sessions were approximately forty
minutes in length (30–60 min). Te principle investigator
facilitated all the interview sessions with research assis-
tants and also documented feld notes. Prior to interview
patients’ demographic and disease data was collected by
a structured questionnaire attached with patient infor-
mation sheet and consent form.

Ethical considerations

Research ethics approval was acquired prior to the


commencement of the study, from Clinical Research
Committee (CRC), Ministry of Health Malaysia (NMRR-
principle investigator to avoid bias. Te transcripts were
then verifed for accuracy by relevant participants and
proceed for analysis after approval. Te principle inves-
tigator recorded the raw data thematically and then the
themes were discussed with other expert independent
researchers to ensure the reliability and trustworthiness
[14]. Each transcript was repeatedly read by three inde-
pendent experts to identify the common theme. Emer-
gent theme was then discussed among all the authors to
refne the analysis. Te investigators continued (and not
concluded) interviews until theoretical saturation was
achieved, when subsequent interview not produce any
new information (saturation + 3 formula applied) [15].

Results and fndings

A total of twenty-one diabetes patients between the


ages 35–67 years with physical disability (P1–P21) were
interviewed. Te cohort of participants was dominated
by males (n = 12) and also distribution pattern showed
majority of participants were Malay (n = 10), followed
by Chinese ( n = 7 ) and rest Indians ( n = 4 ) . Majority of
them were married (n = 9) and also moderate socioeco-
nomic status (n = 10). A total of eight participants had
diabetes history of 11–15 years and about half of the par-
ticipants (n = 10) reported oral treatment for diabetes.
Te demographic and clinical characteristics of partici-
pants are summarized in Table 2. All the patients were
asked about regular monitoring/follow-up to physician
before the interview and majority of the participants
(n = 18) reported either missed appointments or forget
follow-up monitoring.

Perception towards self-monitoring blood glucose


practices

When the participants were asked in their opinion what


was the preferred method of recording blood glucose
Gillani et al. Diabetol Metab Syndr (2017) 9:58
Page 4 of 10

Table 2 Demographic and clinical characteristics of par- Single 2 9.5


ticipants (n = 21)
Married 9 42.9

Divorced 6 28.5
Characteristics N %
Widowed 4 19.1
Age (mean ± SD) = 45.89 ± 7.51 years
Treatment mode
Range
Oral anti-hyperglycemic drugs 10 47.6
18–30 2 9.5
Insulin 6 28.5
31–40 5 23.8
Oral and insulin combination 5 23.9
41–50 7 33.4
Physical disability
51–60 4 19.0
Amputate arm/hand 12 57.1
≥61 3 14.3
Amputate leg/foot 9 42.9
Gender
a
Ringgit Malaysia
Male 12 57.1

Female 9 42.9

Ethnicity tests, several participants from low socioeconomic


status and either divorced or widowed denied to
Malay 10 47.6 adapt telem- onitoring instead preferred to record
Chinese 7 33.4 manually.

Indians 4 19.0

Educational status

Primary 7 33.4

Secondary 6 28.5

College 5 23.8

Tertiary 3 14.3

Socioeconomic status

Low (<RMa 1000/month) 4 19.0

Moderate (RM 1000–3000/month) 10 47.6

High (RM 3100>/month) 7 33.4

Duration of diabetes (years)

Less than 5 3 14.3

5–10 7 33.4

11–15 8 38.1

16–20 2 9.5

More than 20 1 4.7

Marital status
“I (prefer to) manually record. I do not understand
how to use a telephone especially opening (applica-
tions and other function on the telephone). To me
manual (recording) is easier (P10)

However, participants from moderate or high eco-


nomic status and either single or married showed posi-
tive perception/willingness to adapt technology based
monitoring.

“I am an old person I like it to be (hand) written.


Anyway as long as someone shows me how to do it I
can do it (electronic monitoring). Of course it’s easier
because you bring your hand phone everywhere you
go. (P18)

At the same time, participants also claimed that use of


technology would be portable to carry along and helped
them to record easily, also provide detailed log ofall the
tests to attending physicians and reduces dependency to
others.

“(Iprefer the) digitals way (telemedicine). Everyday


you can see it in your digital way in the software
(digital diary) so (there is) no need to record like
manually. Sometime(s) even (if) you record manu-
ally the paper (is placed) wherever (and will go)
missing. (With telemedicine) you have a backup.
Due to (limited mobility) I am dependent on family
membersfor (regular check-up), so this electronic log
(will help my physician) to track down my perfor-
mance.. (P21)

“I think, It’s useful to me as an indication (of my


sugar control). I prefer that I can use it to check my
blood sugar (levels and so I can study how this medi-
cation efect(s) my glucose (levels). Also this (reduces
my dependency) to family members (P6)

Barrier to self-care practices; majority of participants


with age >40 years and diabetes history >11 years showed
concern about fnancial conficts, however patients
age >60 years either dependent to other caregiver for
blood glucose monitoring or usually reluctant to self-
monitoring and limited with the experience of diabetes
related symptoms.

“Self-monitoring is okay but sometimes-fnancial


confict (unable to buy sticks for glucometer) let me
forget about checking my sugar for months… then
suddenly I few symptoms (hyperglycaemic or hypo-
glycaemic) pops-up and I remember to continue my
sugar monitoring ( P 1 )
Gillani et al. Diabetol Metab Syndr (2017) 9:58
Page 5 of 10

“ Well what (I can say), I am (afraid) of blood, so More than 80% participants (n = 18) were non-
I cant monitor (my self) sugar… sometimes my adherent to diabetes medications. Lack of disease
son (when free) check the sugar… Usually (twice or knowledge was identifed from participants’ behavior.
three) times per month.. but sometimes I feel
(dizzy) so I asked him to check (blood sugar) (P7)

Awareness towards diet management

When the participants were asked before you diagnosed


(diabetes), have you heard of calorie counting, majority
of the participants regardless of age, marital status and
years of diabetes history were denied.

“ We do not know (about calories) we just eat


what- ever we fancy regardless how how much
calorie is in the food. (P15)

Tere were mixed responses about the barriers to control


diet/calories.

“It is not hard to control (our diet but) sometimes we


(do not want to) waste (food) so we will fnish (up
any left overs). Sometimes your wife might be stressed
at work and (when you) come back and say ‘What is
this (kind offood)!” then it will become a big issue. (Do
you) under- stand? (P8)

“If we cook separately) it can afect our relationship


(with or families). When I do it like that (insisting on
eating healthyfood) your (there will be) a rift in
yourfamily(ies) relationship so sometimes we do not
follow (our diet) that strictly because dinner time is
the only time (for a) family gathering so sometimes we
will eat out (P3)

Participants have mentioned several strategies to con-


troldiet but it seems inefective. Reduction in food intake
especially carbohydrates as well as reducing food intake
was reported. Even so, some participants remain hesitant
to completely changing their diets in order to maintain a
healthy relationship among their family members. Hence
compromises are made. Eventually participant’s diets are
not controlled.

“I have my wife (who does the cooking). I’m living in


a standard family (of) more than six adult people
and more than three children (we) have to cook a
lot and then I will have to cook separately. (P2)

“ I change everything ( diet) because rice is very bad.


(I will eat) rice maybe two (to) three time(s) a day
(week) only so (instead) I (will take) mee hoon (ver-
micelli). (P14)

Behavior to diabetes medication


“(I will) change (my insulin medication) myself.
(Although) the doctor has said not to and (if I am)
afraid of hypo (glycaemia) I should check (my blood
sugar) frst, record (my blood sugar levels) and if I
continue to be hypo (glycaemic) I should call (the
clinic) to reduce (my insulin medication) (P19)

“It is not good (anti-diabetic medication) because it


does not cure but instead worsens (diabetes). Te
medication keeps increase from half (a dose) to one
(dose) to two (doses). Meaning it does not cure but
worsens (my condition). (P12)

At the same time, several lay beliefs found to influ-


ence the diabetes management. Participants’ lack of
awareness towards diabetes treatment showed the
possible (Tables 3, 4) cause of non-adherence in the
cohort.

“In the beginning I was worried (when I) took


(insulin). He (my friend) told me that (insulin) is
made out of swine. When I knew of it I did not
want (to take insulin that is made from swine).
What happens when (a byproduct of) swine enters
(my) body? How am I going tobathe?”… (P1)

Even patients with high economic status, middle age


35–50 and diabetes history of 5–10 years were infuenced
towards alternative treatments.
“Pomegranate juice. (When I) ate that I checked that
my blood (pressure) reduced a lot”. (P17)

“Tis (balsam apple) if you take it daily (your blood)


sugar (levels) will go down (P9)

“Usually you soak ladies fnger in the water (overnight)


and you drink the water tomorrow morning it will also
make the (blood) sugar (levels) go down (P5)

“Tat “bile of earth” (Andgrographis paniculata) if


you take that I can assure (you that) hundred per-
cent your BP (blood pressure) will go down you sugar
(will) also go down. In fact I have discussed with my
doctor and he agrees. He is a very elderly man (but)
he agree(s). But you can only take once week not
more than three times (or else) you can not urinate
and experience erectile dysfunction” …. (P16)

Cues of action

Mobile reminder

Although it is advised that self-monitoring is important


for diabetics to control their blood glucose levels but
participants have reported limited practice to glucom-
eter and family support remains an important factor to
ensure compliance:
Gillani et al. Diabetol Metab Syndr
9:58

Table 3 Themes and sub themes of participants

Themes Probe Demographics Responses

Perception towards self-monitoring blood glucose practices

In your opinion what is the preferred 59/F Indian I (prefer to) manually record. I do not understand how to use a telephone especially
method of recording blood opening (applications and other function on the telephone).To me manual
glucose reading? Amputate leg (record- ing) is easier

47/M Malay I am an old person I like it to be (hand) written. Anyway as long as someone shows me
how to do it I can do it (electronic monitoring). Of course it’s easier because you
Amputate arm bring your hand phone everywhere you go

(I prefer the) digitals way (telemedicine). Everyday you can see it in your digital way in
35/F Chinese
the software (digital diary) so (there is) no need to record like manually. Sometime(s)
Amputate leg even (if) you record manually the paper (is placed) wherever (and will go) missing.

(With telemedicine) you have a backup. Due to (limited mobility) I am dependent on


family members for (regular check-up), so this electronic log (will help my physician)
to trackdown my performance

Do you think self-monitoring of blood 44/M Malay I think, It’s useful to me as an indication (of my sugar control). I prefer that I can use
glucose useful for diabetes it to check my blood sugar (levels and so I can study how this medication efect(s)
manage- ment? Amputate leg my glucose (levels). Also this (reduces my dependency) to family members

59/F Chinese Well this is the age of information technology, you can monitor (your health
condition) by the Internet everywhere you go. I just (loginto) the Internet (and I can
Amputate arm track) my dose, what food (or) meal and what nutrition is suitable to my body.
You will narrow (down the self-care methods) that suit your body and not other
peoples

What stops people for self-care 46/M Indian Self-monitoring is okay but sometimes-fnancial confict (unable to buy sticks for glu- Page 6 of
prac- tices? cometer) let me forget about checking my sugar for months … then suddenly I few
Amputate arm symptoms (hyperglycaemic or hypoglycaemic) pops-up and I remember to

10
continue my sugar monitoring

I think (it) depend(s) on the situation where you live in a village (which is) very
55/F Chinese difcult now also because certain villages you don’t have traditional gathering so
traditional food with rich sugar (often) serve you already (know) that (day) your
Amputate arm sugar is not in control… so no point of monitoring. I usually double the drug
dose

Well what (I can say), I am (afraid) of blood, so I cant monitor (my self) sugar …
some- times my son (when free) check the sugar…… Usually (twice or three)
63/M Malay
times per month.. but sometimes I feel (dizzy) so I asked him to check (blood
Amputate leg sugar)

10
Gillani et al. Diabetol Metab Syndr (2017) 9:58
Page 7 of 10

“Long-term basis we can do ourselves but (it is) bet- non-insulin dependent). Majority of studies target
ter that someone (to) assist or remind us (to control the population between age 45–78 years [4, 7, 10–15]
out blood sugar levels) because I take everything when weight concerns are atleast level. However about
easy so my wife will be my reminder she will remind 66% of this study participants were age <50 years.
me to do all this la (controlling diabetes). Even Also aware- ness of calorie counting as diet control
for technology (mobile-based) or whatever my wife strategy have never discussed before, thus this study
will be the caretaker and remind (me) what to do have explore the
and what to eat or not to eat ( P1 1 )

Diabetes education

Many participants acknowledge that diabetes education


is important. Participants were interested to gain new
knowledge while some showed initiative to attend dia-
betes education seminars organized by the local clinics.
Some participants provided suggestions on how to bet-
ter encourage other diabetics to attend diabetes educa-
tion seminars. Participants suggest that as every diabetic
should take the initiative to ensure adequate knowledge
is obtained in order to better manage their disease:

“Because this one (diabetic education) is not com-


pulsory. Hospitals should make (it) compulsory
for all patient(s) to attend the classes. Patients
should be forced to come (and) attend classes also
support groups would be better (and) should be free
that will help others to understand about diabetes.
(P20)

Discussion

Self-care practices including self-monitoring of blood


glu- cose has an important role in diabetes management.
Sev- eral studies have documented the relationship
between knowledge and self-care practices including;
physical activity and adherence to diet. All of them
focused on either general population or type 2 diabetes
patients but none of them have ever discussed the
practices among physically disabled patient [16–19]. Tis
study explores the patients’ practices and barriers to self-
care practices.

Self-management is considered as an important part of


diabetes care. Also, knowledge, awareness is the greatest
weapon in the fght against diabetes mellitus that might
help diabetics to understand disease risks, motivate them
to seek proper treatment and care, and set up them to
keep the disease under control [20–24].

Several variables infuence the glucose metabolism


among diabetic population, including weight status, gen-
der, age and type of diabetes (insulin dependent versus
patients’ awareness to understand the concept of calorie
counting in diet modifcation plan. Usually this behavior
overestimated with patients’ response only. Studies have
suggested that pharmacist-led intervention model sig-
nifcantly improved patients’ knowledge and practices to
dietary modifcation and physical activities [10–15].

Self-monitoring of blood glucose (SMBG) has been


recommended by the American Diabetes Association as a
test for monitoring the glycemic status [25].

Educational interventions involving patient participation


and collaboration seemed to be more efective than didactic
interventions in improving glycemic control. Te process of
self-management includes the tendency to structure situ-
ations and activate resources (self-perception), to accept
options for action (self-refection) and to believe in self-ef-
cacy (self-regulation). Structured programs which mostly
combine information, strategies for behavioral changes,
and self-management strategies are still needed [26].

Aspects of the process of self-management (structur-


ing the situation and activating resources [self-perception],
accepting options for action [self-refection] and believing in
self-efcacy [self-regulation]) which lead to a change in the
metabolic profle of patients using blood glucose self-mon-
itoring. SMBG coupled with structured brief counseling
provided patients with a tool for taking on more self-control
and resulted in an improved outlook on life [27].

Te study has found several lay beliefs that infuence


the treatment outcomes. Patients have also claimed the
self-prescribing behavior and also lack of diabetes-dis-
ease based knowledge. Scientifc literature debated on
the use of herbal and natural remedies from last several
decades, but patient’s behavior is refective to functional-
knowledge about the disease. Terefore, care-plan must
include the elements of disease-knowledge, potential
determents that infuence the treatment course and
patients-participation in treatment planning [10, 13, 15].

Limitations

Te study is limited to patients with help-seeking behav-


ior, clearly there are patients not willing to visit health-
care facilities and live in a hostile environment. Te
limitation of funding restricted the study to conduct a
nationwide survey therefore results of this exploratory
study are not truly representative of the entire popula-
tion. Tis study has not performed any anthropometric
(waist circumference, body mass index etc.) correlation
with the patients’ responses thus future directions should
focus on behavioral relationship with clinical variables.

Conclusions

Tis study had identifed lack of diabetes related knowl-


edge among physical disabled patients. Self-care blood
glucose monitoring is somehow limited but the use of
Gillani et al. Diabetol Metab Syndr (2017) 9:58
Table 4 Interview key fndings on opinion on diet and diabetes management among participants (n = 21) of

Themes Probe Demographics Responses

Awareness towards diet management

In your opinion what are the strategies 34/M Malay I have my wife (who does the cooking). I’m living in a standard family (of) more than six adult people
to control diet? and more than three children (we) have to cook a lot and then I will have to cook separately
Amputate leg
I change everything (diet) because rice is very bad. (Iwill eat) rice maybe two (to) three time(s) a day
67/M Chinese (week) only so (instead) I (will take) mee hoon (vermicilli)
Amputate arm

Barriers to controlling diet? 45/M Indian It is not hard to control (our diet but) sometimes we (do not want to) waste (food) so we will fnish (up
any left overs). Sometimes your wife might be stressed at work and (when you) come back and
Amputate leg say‘What is this (kind of food)!” then it will become a big issue. (Do you) understand?

35/F Malay If we cook separately) it can afect our relationship (with or families). When I do it like that (insisting on eat-
ing healthy food) your (there will be) a rift in your famil(ies) relationship so sometimes we do not follow
Amputate arm (our diet) that strictly because dinner time is the only time (for a) family gathering so sometimes we will
eat out

Before you diagnosed (diabetes), 35/F Malay I know (about) the calorie count(ing) such as the nutrition (content), cholesterol (and) calories (are all on
have you heard of calorie counting? the food packet) but because we have been used to taking any (food) we like (it is difcult) when I’ve
Amputate arm found out that I have this sickness (diabetes) and I have to start controlling this and that but even so I
still feel

(like I) want to eat the same food. That’s our attitude

47/M Chinese We do not know (about calories) we just eat whatever we fancy regardless how how much calorie is in
the food
Amputate arm

Behavior to diabetes medication


56/M Malay (I will) change(my insulin medication) myself. (Although) the doctor has said not to and (if I am) afraid of
What type of experiences with diabetes hypo(glycaemia) I should check (my blood sugar) frst, record (my blood sugar levels) and if I continue
medication usually reduces the Amputate arm to be hypo(glycaemic) I should call (the clinic) to reduce (my insulin medication)
people adherence?
59/F Chinese It is not good (anti-diabetic medication) because it does not cure but instead worsens (diabetes). The

Amputate arm medication keeps increase from half (a dose) to one (dose) to two (doses). Meaning it does not cure
but worsens (my condition)

Do you aware of other beliefs (lay 46/M Indian In the beginning I was worried (when I) took (insulin). He (my friend) told me that (insulin) is made out
beliefs) in people that infuence the of swine. When I knew of it I did not want (to take insulin that is made from swine). What happens
diabetes management? Amputate arm when (a by product of) swine enters (my) body? How am I going to bathe?

10
45/F Malay Correct there is a lack of (diabetes knowledge among the public). People assume that when he has
a chronic disease means that he is waiting to die. We have to change our mentality
Amputate leg
Have you heard of alternative Pomegranate juice. (when I) ate that I checked that my blood (pressure) reduced a lot
medicines for diabetes? 49/M Malay

Amputate leg
This (balsam apple) if you take it daily (your blood) sugar (levels) will go down

53/M Indian Usually you soak ladies fnger in the water (overnight) and you drink the water tomorrow morning it
will also make the (blood) sugar (levels) go down
Amputate leg
That“ bile of earth”(Andgrographis paniculata) if you take that I can assure (you that) hundred percent
39/F Malay
your BP (blood pressure) will go down you sugar (will) also go down. In fact I have discussed with my
Amputate arm doctor and he agrees. He is a very elderly man (but) he agree(s). But you can only take once week not
more than three times (or else) you can not urinate and experience erectile dysfunction
43/F Chinese
Amputate arm

10
Gillani et al. Diabetol Metab Syndr (2017) 9:58
Page 9 of
10

pharmacist or mobile devices might improve the prac-


tices. Also study concluded that patients with physical
disability required extensive care and efective strate- Funding
gies to control glucose metabolism. Patients with physi- This study is self-sponsored.
cal disability should be considered as special population
and healthcare professionals focus more on improving Publisher’s Note
patients’ knowledge and behavior than treatment plan.
Springer Nature remains neutral with regard to jurisdictional claims in
pub- lished maps and institutional afliations.
Practice implication
Received: 27 March 2017 Accepted: 19 July 2017
1. Tis study is the frst to explore the patients’
behavior and practices to disease management
among physi- cally disabled type 2 diabetes mellitus
patients.

2. Physical disability and cognitive impairments are the


major barriers to achieve optimal glycemic control
and medication adherence.

3. Somehow the research community ignored to


explore the patients’ behavior to self-care practices
and medication adherence with physical disability.
Authors’ contributions

SWG: Principle investigator and drafted the manuscript. SASS: Participated


in data collection and design the study. MIMA: Involved in qualitative
analysis.

SYS: Participated in study content analysis and helped to draft the


manuscript. All authors read and approved the fnal manuscript.

Author details
1
Clinical and Hospital Pharmacy Department, College of Pharmacy, Taibah

University, Medina, Kingdom of Saudi Arabia. 2 Pharmacotherapy Research

Group, Puncak Alam, Malaysia. 3 School of Pharmaceutical Sciences,


Universiti Sains Malaysia (USM), Pinang, Malaysia. 4 College of Pharmacy,
University

of Philippines, Quezon City, Philippines. 5 Cancer Biology Department,


National Cancer Institute, Cairo University, Kasr Al-Aini Street, Cairo, Egypt.

Acknowledgements

We would like to acknowledge the support of nursing staf and physicians


for providing efective feedback on validation of probes and thematic
analysis.

Competing interests

The authors declare that they have no competing interests.

Availability of data and materials

Open-access with corresponding author: A/P Dr. Syed Wasif Gillani.

Ethics approval and consent to participate

Approval from IRB, Ministry of health Malaysia and Clinical research


committee (CRC).

Written consent forms were obtained from all the participants.


9. doi:10.17532/jhsci.2012.2012.47.
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