Effect of participation in a randomised controlled trial of an integrated palliative care intervention on HIV-associated stigma

Abstract

We conducted in Kenya a mixed-methods randomised controlled trial (RCT) of a nurse-led palliative care intervention integrated with anti-retroviral therapy (ART) provision for the management of HIV. Here we report qualitative findings showing increased resistance to HIV-associated stigma among trial participants. A mixed method design was chosen to enable identification of the active ingredients of the intervention and exploration of participants' experiences of receiving the intervention. The RCT was conducted from July 2011 to November 2012 in a community hospital in the city of Mombasa, Kenya, with a sample of 120 adults with HIV on ART. Thirty participants were purposively selected to take part in a qualitative exit interview, based on study arm and mental health outcome. Inductive thematic analysis revealed increased resistance to HIV-associated stigma in both the intervention and control groups. Specifically, patients in both groups described benefit from the social support, compassionate care, and open and respectful communication they received through study participation. Participants described improved self-image, increased access to social agency, and increased resistance to HIV-associated stigma. Our findings suggest that there is potential to increase resistance to stigma through simple mechanisms of support, compassion, and improved communication in routine care. The self-reported impact of trial participation on stigma also has implications for future trials in populations in resource-constrained settings where stigma is common.

Is symptom prevalence and burden associated with HIV treatment status and disease stage among adult HIV outpatients in Kenya? A cross-sectional self-report study

“…good quality of life for people living with HIV (Lazarus et al, 2016), then careful assessment of pain and symptoms must be a priority. This requires the replication of simple interventions to deliver person-centred HIV outpatient care (Logie and Harding, 2005b, Lowther et al, 2018a, Lowther et al, 2018b, Lowther et al, 2016, Lowther et al, 2015a), strategies to ensure pain relieving drugs are available in pharmacies and are prescribed (Logie and Harding, 2005a), and that low cost, effective interventions such as pain self-management for people living with HIV are delivered (Nkhoma et al, 2018, Nkhoma et al, 2015. Importantly, our data highlight the important of self-reported outcomes from diagnosis until the end of life.…”

Stigma reduction interventions in people living with HIV to improve health-related quality of life

“…69 One study that examined a patient-centred holistic care intervention among adults living with HIV in Kenya found that simple mechanisms for support, compassion and improved communication in routine care increased self-esteem, stigma resilience and increased confidence to disclose HIV status. 58…”

“…The majority of the included papers described interventions that targeted specific groups living with HIV such as women, 47,53,64,67 children/families, 49,56,60,70,71 ethnic subgroups 51,53,67 or key populations such as adolescents 49,56 and MSM, 46,68 while only two included people living with HIV with other comorbidities, i.e. chronic pain 58 or mental health issues. 54 Some interventions were multi-level, including community members, social networks, family members/caregivers and healthcare workers.…”

Integrated Care as a Model for Interprofessional Disease Management and the Benefits for People Living with HIV/AIDS

“…Integrated care counters this through therapeutic impartiality, empathy through compassionate care, social support, and appreciative and non-judgmental communication [ 105 ]. Moreover, integrated care aims to promote health literacy with PLWH’s ability to use health services on their own and build resilience and self-efficacy to cope with the complex situation [ 29 , 106 ].…”