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

• By David Westlake and Donald Forrester
• British Journal of Social Work, (2015)
  
  

All research requires ethics and governance consideration of any harm it might cause participants, yet we know relatively little about the experiences of service users who participate. This paper explores the views of parents and carers involved in an English study into outcomes for children known to children's services.

Experience of distress is a feature of participating in research into sensitive topics, but this does not mean participation is necessarily harmful. Since routine follow-up to research is rare, any harm experienced by participants is likely to remain hidden. Equally, lack of evidence on the benefits of participation may encourage ethical committees to take a risk-averse approach. These potential benefits include:

• The role of the researcher as independent and non-judgmental
  
  
• The potential therapeutic value in the research encounter
  
  
• The relationship between researcher and participant - research offers a rare opportunity to be treated as an expert and share experiences
  
  
• An affirming, strengths-based, element for participants who have overcome difficulties.
  
  

This research used a follow-up questionnaire that gathered data on participants' experiences of taking part in research interviews as part of a larger study in one local authority (Forrester et al, in preparation). Interviews focused on engagement and views on the social work service, the reasons for referral, reflections on family life, parent and child wellbeing and goals. Of 106 families who took part in the interviews, 97 participants completed a questionnaire.

Cost-benefit decisions

Participants were overwhelmingly positive about their involvement and none reported being harmed by the process. Nearly all participants (96 per cent) who took part in the two research interviews reported being glad they took part.

There is evidence that participants weigh up the costs and benefits of taking part. Even though some participants (31 per cent) felt the interviews were difficult or upsetting to some degree, most of these (90 per cent) also felt that talking to the researcher helped them with their problems (see graphic). Indeed, parents who reported finding interviews upsetting were more likely to say they also found them helpful.

 

Arguably, the feelings of temporary distress that surface in some research interviews should not be mistaken as risks of lasting harm (Newman and Kaloupek, 2009). Reframing them as costs helps us move beyond narrow ideas of risk and harm prescribed by governance documentation. This also challenges the prevailing tendency for those labelled as ‘vulnerable' to not have the opportunity to be heard. Our research found that respondents welcomed the opportunity to comment on the services they were receiving, and enjoyed and reported benefit from participating in the study.

Research as a form of intervention

The finding that 90 per cent of participants felt that being involved helped them with their problems raises the question of whether research interviews may have therapeutic value. There are of course issues here around the fact that social work researchers are not usually qualified practitioners but when the content and process of a research interview are compared to a counselling intervention, there are similarities. Both should include:

• An interested, non-judgmental listener focusing on a problem and attempting to elicit service users' views on the issue
  
  
• Warmth, genuineness and empathy, all core attributes of effective helping relationships.
  
  

If research interviews have similarities to social work and counselling interviews, the impact on both parties may also be similar, which raises the issue of how researchers deal with their own emotional response to the interviews. In addition, researchers have a duty to make clear the boundaries of research and practice so as not to foster expectations of being able to offer continuing help or support; though arguably they should be able to signpost participants to services.

Implications for practice

In taking an overly risk-averse approach, ethics committees actively discriminate against people whose voices are rarely heard, denying them a voice but also the potential benefits of participating in research. This has profound implications for the way in which we consider ethics in social work research:

• Research needs to be considered as a form of intervention. As such it is necessary to balance both potential advantages and possible risks for both parties.
  
  
• Ethics committees need to focus on study design and the quality of the interaction, requiring a focus on supporting researchers to do research in a way that helps people where possible rather than simply avoiding harm.
  
  
• Evaluation of the impact of research to be built into ethical study design.

The research section for this special report is based on a selection of academic studies which have been explored and summarised by Research in Practice part of the Dartington Hall Trust.


Further reading

Related resources:

• SCIE resources on co-production in social care: What is it and how to do it
• Children's participation in decision-making: a children's views report by the Office of the Children's Commissioner
• Participation work by the Office of the Children's Commissioner with young children and their families aimed at reducing the impact of low income
• Children and young people giving feedback on services for children in need: ideas from a participation programme by the Office for the Children's Commissioner
• Achieving emotional wellbeing for looked after children: a whole system approach by the NSPCC
• Learning from the Relationships Matter project, challenging and promoting continued relationships between practitioners and care leavers
• The Department for Education has recently published the user journey mapping research report and website.
• An evaluation of the impact of children's participation on The Children's Society and its stakeholders
• Emerging learning from the Council for Disabled Children Learning and innovation programme including promising practice around co-production
  
  

Related resources by Research in Practice:

• Voice of the child: Evidence review
• Attachment: Frontline briefing
• Adolescent mental health: Frontline briefing
• That Difficult Age: Developing a more effective response to risks in adolescence: Evidence scope
• Communicating effectively with children under 5: Frontline briefing
• Communicating effectively with Children Under 5: Webinar recording
• Communicating effectively with children: In-house workshop
• June 2016 Communicating with children and young people with developmental delay, communication difficulties and disabilities: Frontline briefing
• June 2016 Young person-centred approaches in Child Sexual Exploitation (CSE): Building self-efficacy and promoting participation: Frontline briefing
• July 2016 Young person-centred approaches in Child Sexual Exploitation (CSE): Building self-efficacy and promoting participation: Webinar
• System redesign with young people's voices centre stage: Blog by Louise Bazalgette from NSPCC and Jake Garber from DfE's Innovation Unit
• Evaluation tools and guides including:
• Embedding the Voice of Children and Young People in Service Evaluation: Evaluation Tool
• Ethics for research with children, young people and vulnerable adults