“Support for the supporters”: a qualitative study of the use of WhatsApp by and for mentor mothers with HIV in the UK

Third-sector organizations, an important support for people living with HIV, increasingly use digital technology to improve service efficiency and reach. However, there is limited empirical evidence on this use by women living with HIV. The 4M Network (4MNet) is a peer-run UK-wide network of trained Mentor Mothers (MMs) living with HIV; it uses the WhatsApp platform as its primary digital communication tool. We report on a qualitative study about 4MNet MMs’ experiences of using WhatsApp, to inform the design of future digital support services. Seven telephone interviews were conducted with five MMs and two project management team (PMT) members in February 2019. Interviews were analyzed using Interpretive Phenomenological Analysis (IPA). WhatsApp was found to have several key features that provided both positive and negative use considerations. WhatsApp eased communication among MMs and supported participation in group activities despite differing schedules and geographic locations. Challenges encountered with WhatsApp included: financial restrictions to data storage and continual access; self-confidence using technology; and security and privacy concerns. Peer-led digital communication is found to be acceptable and effective for women living with HIV. Understanding barriers and valued features of existing digital platforms increasingly used among potentially marginalized groups is vital for informing inclusive innovation

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

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

What are the current factors that impact on health-related quality of life for women living with HIV?

Since the start of the HIV epidemic, care has often had a strong focus on quality of life. In the early days, this was in part due to the limited treatment options available for people living with HIV, alongside the strong humanistic desire of those working in the specialty to provide optimum care. Advances in HIV treatments have led to care having more of a medical focus, with national and international targets concentrating on the prevention of new infections. Despite medical progress, the impact of being diagnosed and living with HIV has a significant impact on many people, across all aspects of their life. Factors that impact on health-related quality of life for women living with HIV are often poorly understood and under-explored in healthcare settings

A systematic review of contemporary models of shared HIV care and HIV in primary care in high-income settings

HIV shared care is uncommon in the UK although shared care could be a beneficial model of care. We review the literature on HIV shared care to determine current practice and clinical, economic and patient satisfaction outcomes. We searched MEDLINE, EMBASE, NICE Evidence, Cochrane collaboration, Google and websites of the British HIV Association, Aidsmap, Public Health England, World Health Organization and Terrence Higgins Trust using relevant search terms in August 2014. Studies published after 2000, from healthcare settings comparable to the UK that described links between primary care and specialised HIV services were included and compared using principles of the Critical Appraisal Skills Programme and Authority, Accuracy, Coverage, Objectivity, Date, Significance frameworks. Three of the nine included models reported clinical or patient satisfaction outcomes but data collection and analyses were inadequate. None reported economic outcomes although some provided financial costings. Facilitators of shared care included robust clinical protocols, training and timely communication. Few published examples of HIV shared care exist and quality of evidence is poor. There is no consistent association with improved clinical outcomes, cost effectiveness or acceptability. Models are context specific, driven by local need, although some generalisable features could inform novel service delivery. Further evaluative research is needed to determine optimal components of shared HIV care