Amsterdam 2015
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| Abstract #2392 - Community engagement | ||||
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Session: 49.1: Community engagement (Parallel) on Friday @ 09.00-10.30 in 202 Chaired by Javier Toledo, Avrom Sherr Authors: Presenting Author: Dr Keira Lowther - Dartington Social Research Unit, United Kingdom |
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| Additional Authors: | ||||
| Aim: Experimental studies to test interventions among people living with HIV in marginalised communities are essential to ensure appropriate and effective clinical care. The methodological implications of the design and conduct of studies in such populations are discussed theoretically, but rarely reported. In addition to analysis of impact, process and outcome data of the Treatment Outcomes in Palliative care (TOPCare) trial were analysed to explore the experience of participating in a trial, and the resulting methodological, clinical and ethical implications. | ||||
| Method / Issue: The TOPCare study evaluated the impact of a nurse-led palliative care intervention for HIV positive adults on antiretroviral therapy (ART) on self-reported outcomes. The intervention nurses were experienced ART clinicians who received two weeks didactic training and ongoing mentoring and clinical supervision. Intervention participants received a minimum of seven clinical appointments. Participants in both arms received 5 monthly quantitative data collection appointments. Post-trial exit, 10 control and 20 intervention patients participated in a semi-structured qualitative interview. Qualitative data reported here was analysed using directed thematic analysis in Nvivo10 using inductive and deductive themes from the study objectives. | ||||
| Results / Comments: We found unanticipated therapeutic benefit in both arms, attributed to research team compassion, social support, and communication on mental health and well-being. Participants described how being treated with compassion and receiving social support enabled them to build trusting relationships with the research team, which supported rebuilding self-image and self-esteem, increasing positive mental health and well-being. Open and non-judgmental communication appears to have exerted an effect similar to unconditional positive regard, where the participants felt accepted and free. This was particularly powerful because of stigmatisation and isolation in this population. Both study arms reported benefit from receiving material support (through reasonable participant transport expenses payment). This relieved financial hardship, which was a common life experience within this sample. This relief enabled participants to fulfil their social responsibilities increasing feelings of self-worth. Participants described how repeated completion of the patient reported outcome measures (PROM) during data collection was a prompt for reflection, through which participants began to help themselves and to self-care. It also served as a reminder of the importance of health promotion guidelines (i.e. condom use) and increasing their supportive social networks. | ||||
| Discussion: Clinically, these findings emphasise the importance of compassion, support and effective communication in the clinical encounter, particularly in stigmatised and isolated populations. In terms of research, we would advocate that researchers be mindful and cautious of the potential effect of receiving financial reimbursement. In terms of research ethics, participation in research has unexpected positive benefits for participants, which should be taken into account when designing research in this population. One possibility could be to start data collection before initiating the intervention, to allow any adjustment to the increased social contact and support, mitigating the effect of this phenomenon on outcomes. Finally, simple, multidimensional PROMs, (i.e. African Palliative Care Association Palliative Outcomes Scale), should be used during pre-assessment before the clinical encounter, encouraging reflection, with the possibility of data being made available for clinical planning and research purposes. | ||||
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