Hainsworth, EG; Shahmanesh, M; Stevenson, F; (2020) HIV positive and treated for cancer: The convergence of pressures "invisible" in HIV and "visible" in cancer. European Journal of Cancer Care , 29 (3) , Article e13222. 10.1111/ecc.13222.

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Abstract

OBJECTIVE: An increasing number of people living with HIV are living longer and experiencing a dual diagnosis of HIV and cancer. Little is known of their experience and quality of care. This paper presents the findings of a study exploring experiences of cancer care, from the perspectives of both patients and healthcare professionals. METHODS: Thematic analysis of participant narratives provided in longitudinal, semi-structured interviews with 17 people, recruited from three London sites between 2015 and 2017. Focused ethnography comprising 27 hr of participant observation and seven semi-structured interviews with healthcare professionals. RESULTS: Both HIV and cancer have a powerful, combined impact; in cancer, the impact is visible; in HIV, it is generally hidden. Patients and staff experienced particular challenges in the cancer setting. Patients felt responsible for their HIV management and described being excluded from clinical trials. Both staff and patients encountered difficulties around the management of information relating to HIV. CONCLUSION: This dual diagnosis has a profound and negative effect on patients' experiences and potential outcomes. Improvement depends on interventions that acknowledge the shared social narrative and impact of HIV-related stigma so that this burden is not carried by the patient alone.

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