Conducting experimental research in marginalised populations
Clinical and methodological implications from a mixed-methods randomised controlled trial in Kenya
Bibliographic Data
| ID | 19438638 |
|---|---|
| Authors | Keira Lowther (King's College London), Richard Harding (0000-0002-3839-9366), Aabid Ahmed (Aga Khan Hospital, Mombasa), Nancy Gikaara (Kenya Psychiatry Association), Zippy Ali (Kenya Psychiatry Association), Hellen Kariuki (0000-0002-8284-7197, University of Nairobi), Lorraine Sherr (0000-0002-5902-8011, Department of Health and Social Care), Victoria Simms (0000-0001-5664-6810, London School of Hygiene & Tropical Medicine), Lucy Selman, Lucy E Selman (0000-0001-5747-2699, King's College London, corresponding author) |
| Year | 2016 |
| Volume | 28 |
| Issue | sup1 |
| Pages | 60-63 |
| Publication date | 2016-03-24 |
| Peer Reviewed | Yes |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | AIDS Care (JOURNAL) |
| Journal identifiers | ISSN: 0954-0121 • E-ISSN: 1360-0451 |
| Publisher | Informa UK Limited (PUBLISHER • GB) |
| DOI | 10.1080/09540121.2016.1146214 |
| PMID | 26916738 |
| OpenAlex | W2286449537 |
| Language | EN |
| Citations received | 3 |
| References cited | 17 |
Experimental studies to test interventions for people living with HIV in low- and middle-income countries are essential to ensure appropriate and effective clinical care. The implications of study participation on outcome data in such populations have been discussed theoretically, but rarely empirically examined. We aimed to explore the effects of participating in a randomised controlled trial conducted in an HIV clinic in Mombasa, Kenya. We report qualitative data from the Treatment Outcomes in Palliative Care trial, which evaluated the impact of a nurse-led palliative care intervention for HIV positive adults on antiretroviral therapy compared to standard care. Participants in both arms attended five monthly quantitative data collection appointments. Post-trial exit, 10 control and 20 intervention patients participated in semi-structured qualitative interviews, analysed using thematic analysis. We found benefit attributed to the compassion of the research team, social support, communication, completion of patient reported outcome measures (PROMs) and material support (transport reimbursement). Being treated with compassion and receiving social support enabled participants to build positive relationships with the research team, which improved mental health and well-being. Open and non-judgmental communication made participants feel accepted. Participants described how repeated completion of the PROMs was a prompt for reflection, through which they began to help themselves and self-care. Participant reimbursements relieved financial hardship and enabled them to fulfil their social responsibilities, enhancing self-worth. These findings emphasise the importance of compassion, support and effective communication in the clinical encounter, particularly in stigmatised and isolated populations, and the potential of the integration of simple PROMs to improve patient outcomes. Participation in research has unexpected positive benefits for participants, which should be taken into account when designing research in similar populations. Researchers should be aware of the effects of financial reimbursement and contact with researchers in isolated and impoverished communities
Clinical trial · Compassion · Family medicine · Health care · Psychological intervention · Qualitative property · Qualitative research · Randomized controlled trial · Social support · Thematic analysis · HIV/AIDS Research and Interventions · Medicine · Mental Health and Patient Involvement · Nursing · Palliative Care and End-of-Life Issues · Psychology · Social Psychology
Effect of participation in a randomised controlled trial of an integrated palliative care intervention on HIV-associated stigma
Non-specialist psychosocial support interventions for women living with HIV
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
Experience of persistent psychological symptoms and perceived stigma among people with HIV on antiretroviral therapy (ART)
Process evaluation in randomised controlled trials of complex interventions
Sample size in qualitative research
The necessary and sufficient conditions of therapeutic personality change.
Subjective wellbeing and ‘felt’ stigma when living with HIV
Process evaluation in complex public health intervention studies
| Unique citing works | 3 |
|---|---|
| Citations per year | 0.33 |
| Citation span | 2017 - 2019 (3) |
| Citation velocity | historical |
| Highly cited | No |
| Citation types | Neutral: 3 |