Paper under discussion:
Crooks J, Simpson-Greene C, Hughes L, et al Exploring barriers to and experiences of palliative and end-of-life care for people living with HIV: a cross-sectional survey
BMJOpen 2026;16:e107980. doi: 10.1136/bmjopen-2025-107980

Background
WHO recognizes Palliative care as an essential part of the HIV disease trajectory.
HIV has been listed as a condition where access to palliative care has been historically marred by inequities. The ageing HIV population represents a subset where disparities in healthcare are brought to the fore and limited access to healthcare services remains a reality. Experiences of the LGBTQ population continue to be adversely impacted by fear and stigma.

What this Paper says : As per the findings of this online cross sectional survey among PLHIV in the UK, misconception continues to exist about palliative care being synonymous with only end of life care.

HIV positive status continues to impact care provision across settings – general practice, dental and hospital, “sometimes”.

Top three priorities for end of life care included
a. being in a calm atmosphere
b. being free of pain
c. support with psychological well-being

Not being judged also remains a priority.

The authors advocate for partnerships with HIV services and charities, tailored messaging and training for staff in generalist services.

Interestingly, 90 out of 143 respondents (63 percent) identified themselves as LGBTQ+.

Editor’s take –
To what extent is an online response subject to bias?
Does this wide-ranging query demand a multistep research methodology?
Do themes of stigma, abandonment and dissatisfaction with care remain embedded to their PLHIV status or are these issues closely intertwined with the fabric of their sexuality?
Do we need to begin again at the start?

The findings highlight the challenges facing the provision of specialist palliative care in a specific vulnerable population with a disease, that is now considered potentially controllable and not necessarily life-limiting.

The respondent’s emphasis on psychological wellbeing and calm also points towards the possible negation of this aspect of care and demands an urgent re-look at whether existing systems have been insensitive to the holistic nature of care provision.

Having myself worked in countries where homosexuality is labelled as a criminal offence making the LGBTQ community liable to prosecution for making a choice reflecting the reality of who they are, this comes as no surprise. What is most surprising is the fact that these findings represent the reality of practice in a nation considered by many to be the birthplace of the modern hospice movement and politically correct, almost to a fault.

Issues unique to this population include
Concealment among the LGBTQ community where subjects feel compelled to hide important aspects of their life is a known phenomenon at the end of life.
The concept of a chosen family might be different from the actual family also poses a specific challenge.
Disclosure of sexual identity might in itself be associated with a significant amount of psychological distress.
The absence of societal acceptance also perpetuates exclusion and marginalization following bereavement, a phenomenon referred to as “disenfranchised grief”.

Providing LGBTQ+ individuals with the choice to decide the family members that they would like to involve in advanced care planning and end-of-life decisions, rather than assuming choice based upon institutionalized constructs of cisheteronormativity might represent the way forward.

That there might be a need to include these legitimate concerns in documentation and tackle systemic inequity and discrimination more pro-actively might become more evident with a cursory reading of the references. Furthermore, though it might be difficult to discern whether belonging to the LGBTQ+ community (among PLHIV) makes them more likely to face systemic discrimination, it cannot be denied that both populations (PLHIV and LGBTQ+) represent vulnerable minorities most in need of care.

As the discussants at Project Clinical ECHO (Hospice UK) would have rather poetically remarked, “the work needs to go on”.

Conceptual crumbs – Advocacy community over-representation, digital access inequity.

Linked reading – Jerwood, J. and Allen, G. (2025) “Just ask me” – Understanding the views and experiences of LGBTQ+ people from diverse ethnic backgrounds on palliative and end of life care. Stourbridge: The Mary Stevens Hospice.

References

Rosa, W. E., Roberts, K. E., Braybrook, D., Harding, R., Godwin, K., Mahoney, C., Mathew, S., Atkinson, T. M., Banerjee, S. C., Haviland, K., Hughes, T. L., Walters, C. B., & Parker, P. A. (2023). Palliative and end-of-life care needs, experiences, and preferences of LGBTQ+ individuals with serious illness: A systematic mixed-methods review. Palliative Medicine, 37(4), 460–474. https://doi.org/10.1177/02692163221124426

Haviland, K. S., Swette, S., Kelechi, T., & Mueller, M. (2021). Barriers to palliative care in sexual and gender minority cancer patients: A scoping review of the literature. American Journal of Hospice and Palliative Medicine, 38(1), 6–16. https://doi.org/10.1177/1049909120947763

Almeida-Godinho, M., Bristowe, K., de Clercq, E., Harding, R., et al. (2025). Inclusive palliative care for LGBTQIA+ individuals: A socioecological perspective on barriers and enablers. Palliative & Supportive Care. Advance online publication. https://doi.org/10.1017/S1478951525100898

Cite as
Arora, R. D. (2026). Research Radar (RR3): Barriers to care provision – Non-Cancer Palliative Care – Human Immunodeficiency Virus/AIDS. Zenodo. https://doi.org/10.5281/zenodo.20769052

Disclaimer
Palliative medicine is a relatively young subspecialty whose intellectual and clinical boundaries continue to evolve. In the absence of definitive texts to address contemporary questions, artificial intelligence tools mainly Anthropic (Claude) have been employed to support deeper conceptual exploration, challenge assumptions, and improve clarity of expression. They do not replace critical scholarship, clinical experience, or editorial judgment. Final responsibility for all interpretations, factual accuracy, originality of synthesis, and the quality of the published material rests entirely with the Founder and Editor.