Patients’ perspectives on the development of HIV services to accommodate ageing with HIV: a qualitative study

Abstract

Objectives: To identify aspects of healthcare that are most valued by people with HIV; and to describe their concerns and preferences for the future delivery of services for non-HIV related illness amongst people living with HIV (PLWHIV).Methods: Twelve focus groups of people receiving HIV care were conducted in community settings in South-East England. Groups were quota sampled based on age, sex, sexual orientation, and ethnicity. Data were analysed using Framework Analysis.Results: Among the 74 respondents (61% male) a preference for maintaining all care within specialist HIV clinics was commonplace, but was highest among participants with more extensive histories of HIV and comorbidities. Participants valued care-coordination, inter-service communication, and timely updates to medical notes. There were high levels of concern around HIV skills in general practices and the capacity of general practitioners (GP) to manage patient confidentiality or deal appropriately with the emotional and social changes of living with HIV.Implications: Participants valued, and had an overall preference for, the specialist knowledge and skills of HIV services, suggesting that non-HIV-specialist services will need to build their appeal if they are to have a greater future role in the care of people with HIV. Particular concerns that should be addressed include: patient confidence in the HIV knowledge and skills of non-specialist service providers; clear processes for prescribing and referrals; improved levels of care-coordination and communication between services; increased patient confidence in the capacity of primary care to maintain confidentiality and to appreciate the stigma associated with HIV.

Which aspects of health care are most valued by people living with HIV in high-income countries? A systematic review

“…Thirteen of the studies used interviews and/or focus groups to gather qualitative data about aspects of care that are particularly valued [15–17, 20–29]. Thirteen quantitative descriptive studies used questionnaires to collect data [13, 15, 18, 19, 22, 23, 30–36].…”

“…Seventeen (74%) of studies lacked detail on one or more aspects of the methodology used. For qualitative studies there was little information on the interaction between the researcher and participants [15–17, 20–25, 27–29] and how findings related to the context in which the data were collected [15, 22–24, 27, 28]. …”

“…The importance of the healthcare provider being able to prevent illness and provide up to date HIV treatment was also evident [15, 22, 23, 32, 33]. Qualitative studies identified patients’ concerns about changes to the way their health services were provided and the increasing need to be seen by non-HIV specialists [27, 29]. Primary care physicians were perceived as having too little knowledge about HIV and lacking sufficient expertise or experience to treat HIV positive patients [22, 27, 29].…”

“…Participants in one study reported that changes to health policy had resulted in their care being fragmented between GPs, the HIV clinic and other hospital departments, with poor communication between the various services [29]. Participants in another study described the fragmentation of the healthcare system as a barrier to engagement with care [17].…”

“…Eight studies (including 4 (50%) good quality studies) found that patients were concerned about their HIV status being kept confidential [15, 16, 23, 24, 28, 29, 31, 33]. In one study, patients were consulted on the future design of their sexual health and HIV clinic [31].…”