‘So isolation comes in, discrimination and you find many people dying quietly without any family support’: Accessing palliative care for key populations

THIS MONTH’S EDITOR’S CHOICE FROM PALLIATIVE MEDICINE …

Jenny HuntKatherine Bristowe, Sybille Chidyamatare and Richard Harding explain the background to their longer article published in the June issue of ‘Palliative Medicine’.

Clockwise from the bottom row: Jenny Hunt, Katherine Bristowe, Sybille Chidyamatare and Richard Harding.

We were delighted with the selection of our publication as ‘Editor’s Choice’ and the opportunity to disseminate our research more widely in a world where key populations continue to be discriminated against in many ways. The Open Society Foundations, who funded this research into the health and palliative care needs of key populations (sex workers, men who have sex with men (MSM) and lesbian, gay, bisexual, transgender and intersex people (LGBTI)), had initially considered undertaking this research in several African countries. However, it soon became clear that obtaining permission for the research in multiple countries where there is criminalisation, widespread hostility and discrimination towards key populations would be a lengthy and difficult process. Our research therefore was undertaken in Zimbabwe only, the home country of the lead author.

Although discrimination against key populations is common in Zimbabwe, the Medical Research Council adheres to strict criteria to promote good quality local research, and approved the ethics application (reference MRCZ/A/1881). Relationships were developed with key population support organisations through email, telephone calls and direct meetings in order to provide reassurance of the motives and processes of the project. As we were requesting these organisations to identify and recruit participants, it was vital in this environment to emphasise their safety and confidentiality. This cooperation resulted in a sample of 60 individuals from key populations across four sites, and 12 private healthcare providers, representatives of palliative care and key population support organisations. In this socio-politically punitive environment we considered this a positive achievement and are aware how significantly worse the care may be for those living in countries where access to key populations is even more limited. The interviews and focus groups identified that the care and support for key populations provided by healthcare providers, family and community members, was negatively affected by discriminatory beliefs and practices. Health professionals were poorly informed about palliative care and had limited experience with key populations. Stigmatising and prejudicial attitudes discouraged early presentation, diagnosis and treatment, potentially increasing the risk of transmission of infectious diseases, morbidity and mortality.

We hope that the findings of this study will influence the recognition and integration of key populations in the National Palliative Care Strategy for Zimbabwe as it is developed. It is also timely evidence for the Ministry of Health and Child Care palliative care integration initiative currently being undertaken in the country. If we share a vision of palliative care for all, ‘leaving no one behind’, we need to work harder to identify and provide care for all. Attending to the palliative care needs of those most excluded and marginalised will go some way to alleviate their unnecessary suffering caused by untreated conditions, exclusion from services, and minimal family and social support. By focusing on the double stigma of death and key populations this study contributes significantly to the global health agenda. We hope that this prompts further research into their health beyond sexual and mental health.

DOWNLOAD THE FULL ARTICLE IN PALLIATIVE MEDICINE
This post relates to the longer article, So isolation comes in, discrimination and you find many people dying quietly without any family support’: Accessing palliative care for key populations – an in-depth qualitative study by Jenny Hunt, Katherine Bristowe, Sybille Chidyamatare and Richard Harding, doi: 10.1177/0269216319835398 This open access article is published in Palliative Medicine 2019 Volume: 33 issue: 6, page(s): 685-692. Article first published online:12 March 2019. Issue published: 1 June 2019.

  • Read earlier Palliative Medicine Editor’s Choice posts on the EAPC Blog.
  • Follow Palliative Medicineon Twitter @palliativemedj

Links

Jenny Hunt  and Sybille Chidyamatare  are independent consultants in Harare, Zimbabwe.

Katherine Bristowe (Research Associate) and Richard Harding (Herbert Dunhill Professor of Palliative Care & Rehabilitation) can be contacted at Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King’s College London, London, UK.

EAPC MEMBERS CAN DOWNLOAD THIS, AND ALL OTHER ‘EDITOR’S CHOICE’ ARTICLES FREE OF CHARGE
If you are currently an Individual or Associate EAPC Member you have full access to the EAPC website, and the chance to download a free PDF of all ‘Editor’s choice’ articles and many other papers too. Just  click here enter your email address and membership password,   and choose from the list of journal articles.

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Note: You can apply to be an Associate Member FREE of charge provided that you are a member of your country’s national palliative care association, and that the association is an EAPC National Association member.

 

 

This entry was posted in EAPC-LINKED JOURNALS, Minority Communities, Palliative Medicine: Editor's Choice, RESEARCH and tagged , . Bookmark the permalink.

1 Response to ‘So isolation comes in, discrimination and you find many people dying quietly without any family support’: Accessing palliative care for key populations

  1. Rebecca Mwontune says:

    liked the page

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