A reflection on ethical and methodological challenges of using separate interviews with adolescent-older carer dyads in rural South Africa.

BACKGROUND: This article discusses our reflections on ethical and methodological challenges when conducting separate interviews with individuals in dyads in the uMkhanyakude district, South Africa. Our work is embedded in an ethnographic study exploring care relationships between adolescents and their older carers in the context of a large-donor funded HIV programme. We use these reflections to discuss some of the challenges and present possible management strategies that may be adopted in conducting dyadic health research in resource-poor settings. METHODS: Drawing from the relational agency, three rounds of separate interviews and participant observation were undertaken with dyads of adolescents aged between 13 and 19 and their older carers aged 50+ from October 2017 to September 2018. A reflexive journal was kept to record the interviewer's experiences of the whole research process. We identified methodological and ethical challenges from these data during the thematic analysis. RESULTS: A total of 36 separate interviews were conducted with six pairs of adolescent-older carer dyads (n = 12 participants). Five themes emerged: recruitment of dyads, consenting dyads, confidentiality, conducting separate interviews with adolescents and older carers, and interviewer-dyad interaction. We also illustrated how we dealt with these challenges. CONCLUSIONS: Results from this study can guide the recruitment, consenting and collecting data for health studies that employ a similar form of enquiry in LMICs. However, ethical and methodological challenges should be recognised as features of the relationships between cross-generation dyads rather than weaknesses of the method

Participant understanding of informed consent in a multidisease community-based health screening and biobank platform in rural South Africa.

BACKGROUND: In low- and middle-income settings, obtaining informed consent for biobanking may be complicated by socio-economic vulnerability and context-specific power dynamics. We explored participants experiences and perceptions of the research objectives in a community-based multidisease screening and biospecimen collection platform in rural KwaZulu-Natal, South Africa. METHODS: We undertook semi-structured in-depth interviews to assess participant understanding of the informed consent, research objectives and motivation for participation. RESULTS: Thirty-nine people participated (individuals who participated in screening/biospecimen collection and those who did not and members of the research team). Some participants said they understood the information shared with them. Some said they participated due to the perceived benefits of the reimbursement and convenience of free healthcare. Most who did not participate said it was due to logistical rather than ethical concerns. None of the participants recalled aspects of biobanking and genetics from the consent process. CONCLUSIONS: Although most people understood the study objectives, we observed challenges to identifying language appropriate to explain biobanking and genetic testing to our target population. Engagement with communities to adopt contextually relevant terminologies that participants can understand is crucial. Researchers need to be mindful of the impact of communities' socio-economic status and how compensation can be potentially coercive

Participant recall and understandings of information on biobanking and future genomic research: experiences from a multi-disease community-based health screening and biobank platform in rural South Africa.

BACKGROUND: Limited research has been conducted on explanations and understandings of biobanking for future genomic research in African contexts with low literacy and limited healthcare access. We report on the findings of a sub-study on participant understanding embedded in a multi-disease community health screening and biobank platform study known as 'Vukuzazi' in rural KwaZulu-Natal, South Africa. METHODS: Semi-structured interviews were conducted with research participants who had been invited to take part in the Vukuzazi study, including both participants and non-participants, and research staff that worked on the study. The interviews were transcribed, and themes were identified from the interview transcripts, manually coded, and thematically analysed. RESULTS: Thirty-nine individuals were interviewed. We found that the research team explained biobanking and future genomic research by describing how hereditary characteristics create similarities among individuals. However, recollection and understanding of this explanation seven months after participation was variable. The large volume of information about the Vukuzazi study objectives and procedures presented a challenge to participant recall. By the time of interviews, some participants recalled rudimentary facts about the genetic aspects of the study, but many expressed little to no interest in genetics and biobanking. CONCLUSION: Participant's understanding of information related to genetics and biobanking provided during the consent process is affected by the volume of information as well as participant's interest (or lack thereof) in the subject matter being discussed. We recommend that future studies undertaking biobanking and genomic research treat explanations of this kind of research to participants as an on-going process of communication between researchers, participants and the community and that explanatory imagery and video graphic storytelling should be incorporated into theses explanations as these have previously been found to facilitate understanding among those with low literacy levels. Studies should also avoid having broader research objectives as this can divert participant's interest and therefore understanding of why their samples are being collected

Effects of a computerized feedback intervention on safety performance by junior doctors:results from a randomized mixed method study

BACKGROUND: The behaviour of doctors and their responses to warnings can inform the effective design of Clinical Decision Support Systems. We used data from a University hospital electronic prescribing and laboratory reporting system with hierarchical warnings and alerts to explore junior doctors’ behaviour. The objective of this trial was to establish whether a Junior Doctor Dashboard providing feedback on prescription warning information and laboratory alerting acceptance rates was effective in changing junior doctors’ behaviour. METHODS: A mixed methods approach was employed which included a parallel group randomised controlled trial, and individual and focus group interviews. Junior doctors below the specialty trainee level 3 grade were recruited and randomised to two groups. Every doctor (N = 42) in the intervention group was e-mailed a link to a personal dashboard every week for 4 months. Nineteen participated in interviews. The 44 control doctors did not receive any automated feedback. The outcome measures were the difference in responses to prescribing warnings (of two severities) and laboratory alerting (of two severities) between the months before and the months during the intervention, analysed as the difference in performance between the intervention and the control groups. RESULTS: No significant differences were observed in the rates of generating prescription warnings, or in the acceptance of laboratory alarms. However, responses to laboratory alerts differed between the pre-intervention and intervention periods. For the doctors of Foundation Year 1 grade, this improvement was significantly (p = 0.002) greater in the group with access to the dashboard (53.6% ignored pre-intervention compared to 29.2% post intervention) than in the control group (47.9% ignored pre-intervention compared to 47.0% post intervention). Qualitative interview data indicated that while junior doctors were positive about the electronic prescribing functions, they were discriminating in the way they responded to other alerts and warnings given that from their perspective these were not always immediately clinically relevant or within the scope of their responsibility. CONCLUSIONS: We have only been able to provide weak evidence that a clinical dashboard providing individualized feedback data has the potential to improve safety behaviour and only in one of several domains. The construction of metrics used in clinical dashboards must take account of actual work processes. TRIAL REGISTRATION: ISRCTN: ISRCTN7225305