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Multilevel model of stigma and barriers to cancer palliative care in India: a qualitative study
  1. Richard Harding1,2,
  2. Shoba Nair2,
  3. Maria Ekstrand3,4
  1. 1 Florence Nightingale Faculty of Nursing Midwifery and Palliative Care, Department of Palliative Care, Policy and Rehabilitation, King’s College London, London, UK
  2. 2 Department of Pain and Palliative Medicine, St John’s Medical College Hospital, Bangalore, Karnataka, India
  3. 3 Division of Prevention Science- Department of Medicine, University of California San Francisco, San Franscisco, California, USA
  4. 4 St John’s Research Institute, Bangalore, Karnataka, India
  1. Correspondence to Richard Harding; richard.harding{at}kcl.ac.uk

Abstract

Introduction Palliative care coverage and opioid consumption in India are relatively low compared with global data. The literature suggests commonplace concealment and collusion in withholding information, but these hypotheses lack evidence.

Objectives This study aimed to develop an explanatory evidence-based model of stigma, communication and access to cancer palliative care in India that can be used to develop, test and implement future interventions.

Design This cross-sectional qualitative study sampled advanced cancer patients (n=10), their family caregivers (n=10) and oncologists (n=10). Grounded theory procedures were utilised to analyse transcripts, and a theoretical model generated.

Setting A tertiary teaching hospital in South India.

Results The model explains how stigma associated with communicating a diagnosis of advanced cancer is enacted by treating oncologists, family members and community. This leads to patient expectations of cure and futile treatment uptake. Patients commonly only present needs with respect to pain, not within psychological, social or spiritual domains, likely due to the lack of patients’ insight into their diagnosis and prognosis. As a result of oncologists’ and families’ unwillingness to disclose the prognosis, and patient focus on pain due to their lack of insight, palliative care clinicians view their services as under-utilised, and patients perceive palliative care as a pain management service that is not ‘different’ from other clinical services. Advanced care needs and purchase of futile treatments lead to lost employment among families, increased family debt and high care costs, which are rarely disclosed due to their unwillingness to discuss their needs.

Conclusion Our novel theoretical model is an essential first step to ensure that complex interventions are plausible, with mechanisms of action that address the needs of relevant stakeholders. A family-centred approach with an oncology workforce skilled in communication and an enabled patient population could increase access to palliative care, and improved outcomes may be attainable.

  • India
  • cancer
  • stigma
  • palliative care

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

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Footnotes

  • Contributors The study was conceived by ME, SN and RH, SN was local PI and analysis was led by RH with ME and SN reviewing and agreeing the data coding frame. The interpretation of findings was jointly by RH, SN and ME, and all authors contributed to and approved the final manuscript. RH led the drafting of the manuscript with contribution by all authors and final approval by all authors.

  • Funding This study was supported by grant R01MH095659.

  • Competing interests None declared.

  • Ethics approval All procedures were approved by the Institutional Review Boards at St John’s Medical College Hospital (ref: 222/2016), the University of California, San Francisco (ref: 174866), and Kings College London (ref: HR- 16/17 – 3820).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement The raw data (transcripts) are available from the corresponding author upon reasonable request by email.

  • Patient consent for publication Not required.

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