Challenges in multiple perspectives research

There are particular ethical challenges in relation to confidentiality and avoidance of harm that need to be considered in research with multiple connected participants (discussed in section 4.8), as well as challenges in recruitment and fieldwork (Lewis, 2009; Walmsley, 1996). Individual family members can act as ‘gatekeepers’: influencing access to others and the

13 Bigby (2012) is a notable exception.

14 This was deliberately not defined at the outset to reflect the complexity and fluidity of families (see section 2.3).

mediation of information (Lewis, 2009); selecting family members who will present them in a positive way (Song, 1998); or excluding those who may tell contradictory stories (Ribbens McCarthy et al, 2003).

Additional challenges in relation to gatekeepers include communication and negotiations around consent. Lewis (2009: 406) observed that parents can believe that ‘they are the responsible decision-makers’ for their children;

creating tension for researchers who view children as agentic individuals, and is in conflict with ethical practices which require each party to provide consent (ethical issues and informed consent are discussed in section 4.8). This is further complicated in this study because it does not involve children per se¹⁵, but it does involve parents and their adult sons and daughters who have learning disabilities, where parents are often involved in ‘lifelong parenting’ (Seltzer et al, 2011), and the nature of impairment likely means their sons and daughters require support to make decisions. The challenge for researchers is to ensure that all participants receive relevant information, and to be satisfied that each and all potential participants not only understand and agree to participation, but are also not being pressurised or coerced by others (Lewis, 2009).

The importance of pre-interview communication and negotiations in achieving informed consent is discussed in section 4.8. Communication with multiple participants brings additional challenges and potential for misunderstanding (Lewis, 2009), so it is important that participant information is appropriate and relevant to the needs and understandings of all potential participants. In this study, I tried to address some of the communication needs which people with learning disabilities may experience by providing easy read information and consent sheets (see Appendices B and D), though I recognise that this only addresses some of the difficulties for some people, and so I took an individual

15 I note here that we all remain our parents’ ‘children’, regardless of age!

approach to communication, which often involved family members or support workers.

Sociological research often involves individual interviews, but there are benefits to interviewing family members together (Harden et al, 2010). For example, family members can provide prompts and reminders, or question and contradict each other (ibid.). Additionally, research interviews are like a public

performance; participants present themselves in ways that make them look

‘good’ or credible to the interviewer (Song, 1998; Harden et al, 2010). This may be particularly the case for group interviews, as participants are required to perform to fellow participants, as well as the interviewer.

There are further challenges at the analysis stage in multiple perspective research with families. Ribbens McCarthy (2003: 20) notes that vast amounts of data may be produced, therefore analytic strategies can be complex. The volume of data means more information, revealing gaps and silences which may raise further questions, and the possibility of greater understanding (Ribbens McCarthy, 2003). Research which involves multiple participants from families is inevitably ‘messy’, but this allows the researcher to get closer to ‘reality’

(Jamieson, 2011).

Multiple perspective data analysis is messy and complex, particularly if there are different types of data, and this can be ‘overwhelming’ (Harden et al, 2010:

450). For example, individual and group interviews produce different data because of the interaction between participants in group interviews and the possibility of these interviews taking different directions (Harden et al, 2010). In research with children and parents, Harden et al note that researchers should take care to give participants’ accounts equal emphasis and suggests that there may be a temptation to attend more to parents’ data because it may be denser and more detailed than children’s accounts. In this study, both group interviews

and individual interviews were carried out, so the analysis was complicated because of different types of data. Additionally, participants with learning disabilities generally provided much shorter responses than family carers and I was keen to make sure these voices were not drowned out by carers’ lengthier or more articulate narratives in the analysis.

4.8. Ethics

In any research project, there are important ethical considerations in order to maintain professional standards and avoid harm to both researcher and research participants (Bryman, 2008). In this project, there were very particular ethical challenges inherent in the research questions which were related to three main features of the study: it involved multiple related participants; it explored potentially sensitive issues; and it involved a group perceived as ‘vulnerable’. I will briefly explain here why there were particular ethical challenges in relation to these three features, and I will return to them throughout the subsequent discussion in this section on ethics.

First, in seeking to understand the experiences of people with learning

disabilities and their families, the study involved multiple related participants.

This raises particular challenges in relation to informed consent, confidentiality and avoidance of harm. As noted in section 4.7, some family members can act as

‘gatekeepers’ in multiple perspectives research, affecting communication and negotiations around participation and consent. Furthermore, related participants may disclose information which is either not known by other family members, or which they may not wish to disclose or discuss.

Second, understanding how policy change played out within family lives required exploring private, potentially sensitive and emotive issues that may be

distressing for participants to discuss or hear, necessitating the need for extremely sensitive handling.

Third, the study involved people with learning disabilities who may be perceived as a ‘vulnerable’ group. I share Aldridge’s view that ‘vulnerability’ is a highly contestable concept, but philosophical or conceptual debates are not the main concern of the researcher (Aldridge, 2014); rather ‘what is important is that research participants themselves are not put at further risk of harm or their vulnerability is not exacerbated by research processes’ (Aldridge, 2014: 114).

Nonetheless, the potential ethical challenges in relation to carrying out research involving people with learning disabilities required very careful attention in order to satisfy the requirements of the University ethics process.