Adding Evidence to the Ethics Debate: Investigating Parents' Experiences of Their Participation in Research

• Published in: The British journal of social work 2016-09, Vol.46 (6), p.1537-1552
• Main Authors: Westlake, David, Forrester, Donald
• Format: Article
• Language: English
• Subjects: Caregivers; Child welfare; Children; Ethics; Ethics committees; Medical ethics; Parents & parenting; Participation; Regret; Research ethics; Scrutiny; Talking
• ISSN: 0045-3102; 1468-263X
• DOI: 10.1093/bjsw/bcv101

All research requires ethical scrutiny of the harm it may cause participants, yet we know relatively little about the actual experiences of service users who participate. This paper explores the views of parents and carers (n = 97) involved in an English study into outcomes for children known to Children's Services. Nearly all participants (96 per cent) who took part in two research interviews reported being glad they took part, and none expressed regret. Some participants (31 per cent) felt the interviews were difficult or upsetting to some degree, but most of these (90 per cent) also felt that talking to the researcher helped them with their problems. Indeed, parents who reported finding interviews upsetting were more likely to also find them helpful. We suggest that research needs to be considered as a form of intervention, rather than imagined as observing without influencing, and that as such it is necessary to balance both potential advantages and possible risks. Consequently, ethics committees need to focus on study design and the quality of interaction. This requires a focus on supporting researchers to not only 'do no harm', but to help people where possible. It also requires evaluation of the impact of research to be built into ethical study design.