Document Type : Original Article
Authors
1 Department of Health and Family Welfare, Government of West Bengal, West Bengal, India
2 Dr. B.C. Roy Multi‑Speciality Medical Research Centre, IIT Kharagpur, West Bengal, India
3 HRIDAY, New Delhi, India
4 Department of Preventive and Social Medicine, All India Institute of Hygiene and Public Health, Kolkata, West Bengal, India
Abstract
BACKGROUND: People living with noncommunicable diseases (PLWNCDs) are often
disproportionately affected due to adverse interaction with socioecological and biological factors.
Hence, it is imperative to learn from their lived experience to gain a greater understanding of
interactions as well as explore their priorities and needs in accessing care and identify areas of
priority action through multistakeholder engagement.
MATERIALS AND METHODS: The qualitative study with grounded theory approach was
conducted between October and December 2020. An online key‑informant interview with the health
policymaker, virtual group discussion with eight PLWNCDs, and in‑depth telephonic interviews
with five PLWNCDs were conducted, after obtaining informed consent using interview guide,
developed, and validated by the experts. Data collection continued till data saturation was achieved.
Transcripts generated from the interview recordings were coded using hand‑code technique and
analyzed thematically.
RESULTS: Challenges faced by PLWNCDs in accessing care were lack of empathy and support
from health‑care professionals, stigma, financial hardship, and hospital overcrowding. Caregivers
emphasized on the felt need to involve civil society organizations (CSOs) in raising awareness toward
noncommunicable diseases (NCDs) at family, community, and policymaking levels. The need for
home‑based NCD care and rehabilitation centers was voiced by the PLWNCDs. Impediments toward
effective implementation of NCD policies were adoption of a “top‑down” approach, poor awareness
about government health insurance schemes, skewed distribution of empanelled hospitals in and
around cities, nonavailability of qualified health‑care professionals in underserved areas, aggravated
allocation‑utilization disparity during COVID‑19 pandemic, and lack of robust information technology
infrastructure to support access to telemedicine services.
CONCLUSION: The collective role of governments, CSOs, and health‑care providers, along with
meaningful involvement of PLWNCDs, would help to create an enabling environment for overcoming
the challenges of access to care and thus achieve universal health coverage.
Keywords
2021. Available from: https://www.who.int/news‑room/factsheets/detail/noncommunicable‑diseases. [Last accessed on
2021 Jun 26].
2. Non‑Communicable Diseases. National Health Portal of India.
Available from: https://www.nhp.gov.in/healthlyliving/
ncd2019. [Last accessed on 2021 Jun 26].
3. National Health Mission. National Programme for Prevention
& Control of Cancer, Diabetes, Cardiovascular Diseases &
Stroke (NPCDCS): National Health Mission. Available from:
http://www.nhm.gov.in/index1.php. [Last accessed on
2021 Jun 26].
4. NCD Alliance. Universal Health Coverage & NCDs.
NCD Alliance; 2014. Available from: https://ncdalliance.
org/universal‑health‑coverage‑ncds. [Last accessed on
2021 Jun 26].
5. World Health Organization. Beating NCDs Can Help Deliver
Universal Health Coverage; 2017. Available from: https://
www.who.int/news‑room/commentaries/detail/beating‑ncds
‑can‑help‑deliver‑universal‑health‑coverage. [Last accessed on
2021 Jun 26].
6. National Multisectoral Action Plan for Prevention and Control
of common NCDs (2017‑2022). Ministry of Health and Family
Welfare. Government of India. Available from: https://www.
dghs.gov.in/WriteReadData/userfiles/file/Publication. [Last
accessed on 2021 Jun 26].
7. NCD Alliance. India Advocacy Agenda of People Living with
NCDs. NCD Alliance; 2020. Available from: https://ncdalliance.
org/resources/india‑advocacy‑agenda‑of‑people‑living‑with‑nc
ds. [Last accessed on 2021 Jun 26].
8. Healthy India Alliance. Healthy India Alliance|Fighting NCDs for
a Healthy Future. Available from: https://healthyindiaalliance.
org. [Last accessed on 2021 Jun 26].
9. Charmaz K. Grounded theory. In: Lewis‑Beck MS, Bryman A,
Liao TF, editors. The SAGE Encyclopedia of Social Science
Research Methods. Thousand Oaks, California: Sage Publications,
Inc; 2011. p. 441‑4.
10. Charmaz K. Constructing Grounded Theory: A Practical Guide
through Qualitative Research. London: Sage Publications Ltd;
2006.
11. Mills J, Bonner A, Francis K. The development of constructivist
grounded theory. Int J Qual Methods 2006;5:25‑35.
12. Chun Tie Y, Birks M, Francis K. Grounded theory research:
A design framework for novice researchers. SAGE Open Med
2019;7: 2050312118822927.
13. Healthy India Alliance. The India Advocacy Agenda of People
Living with NCDs; 2020. Available from: https://ncdalliance.
org/resources/india‑advocacy‑agenda‑of‑people‑living‑with‑n
cds. [Last accessed on 2021 May 21].
14. Nowell LS, Norris JM, White DE, et al. Thematic analysis:
Striving to meet the trustworthiness criteria. Int J Qual Methods
2017;16:1609406917733847.
15. World Health Organization. Nothing for Us, Without Us:
Opportunities for Meaningful Engagement of People Living
with NCDs; 2021. Available from: https://www.who.int/
publications/i/item/nothing‑for‑us‑without‑us‑opportunities
‑for‑meaningful‑engagement‑of‑people‑living‑with‑ncds. [Last
accessed on 2021 Jun 26].
16. Devi R, Kanitkar K, Narendhar R, Sehmi K, Subramaniam K.
A narrative review of the patient journey through the lens of
non‑communicable diseases in low‑ and middle‑income countries.
Adv Ther 2020;37:4808‑30.
17. Bokhour BG, Fix GM, Mueller NM, Barker AM, Lavela SL,
Hill JN, et al. How can healthcare organizations implement
patient‑centered care? Examining a large‑scale cultural
transformation. BMC Health Serv Res 2018;18:168.
18. Pati MK, Swaroop N, Kar A, Aggarwal P, Jayanna K,
Van Damme W. A narrative review of gaps in the provision of
integrated care for noncommunicable diseases in India. Public
Health Rev 2020;41:8.
19. Mohebbi B, Sabouri M, Tol A. Application of health education
and promotion theory‑based interventions on patients with
cardiovascular disease: A systematic review. J Educ Health
Promot 2021;10:236.
20. Mohebbi B, Tafaghodi B, Sadeghi R, Tol A, Yekanenejad MS.
Factors predicting nutritional knowledge, illness perceptions,and dietary adherence among hypertensive middle‑aged women:
Application of transtheoretical model. J Educ Health Promot
2021;10:212.
21. RawalLB, KharelC, YadavUN, KandaK, BiswasT, VandelanotteC,
et al. Community health workers for non‑communicable disease
prevention and control in Nepal: A qualitative study. BMJ Open
2020;10:e040350.
22. Beran D, Pedersen HB, Robertson J. Noncommunicable diseases,
access to essential medicines and universal health coverage. Glob
Health Action 2019;12:1670014.
23. Bharatan T, Devi R, Huang PH, Javed A, Jeffers B, Lansberg P,
et al. A methodology for mapping the patient journey for
noncommunicable diseases in low‑ and middle‑income countries.
J Healthc Leadersh 2021;13:35‑46.
24. Sahoo KC, Kanungo S, Mahapatra P, Pati S. Non‑communicable
diseases care during COVID‑19 pandemic: A mixed‑method
study in Khurda district of Odisha, India. Indian J Med Res
2021;153:649‑57.
)