La pareja como forma de organización social

 ways to recruit participants;

 attitudes toward the use of actigraphy;

 the format of sleep diaries (e.g. written or audio);

 how to disseminate findings in an accessible way.

The information gathered from the lay advisors directly informed the interview topic guides and the research design and methods. For instance, e-mail contact with one of the young people with CP was continued as she had asked to carry on being involved as an advisor. The first versions of information sheets and consent forms were sent to this young person for her comments and amendments were made accordingly.

Issues concerning children being interviewed on their own were raised by two of the lay advisors which will be discussed in the next section. In terms of the impact on the design of the research these comments emphasised the need to ensure that the purpose of the research was understood fully by all involved.

This meant ensuring that the information given was clear, appropriate and that there were opportunities for questions to be asked. Although at the start of my project I really wanted children to be interviewed alone I needed to accept that this might not be a comfortable situation for some children and, therefore, the choice was given to children about whether they wanted someone else present during the interview and, if so, who this should be. These issues will now be discussed in more detail.

4.7 Interviewing children on their own and confidentiality issues

I approached my research design with the view that I would maintain confidentiality for all my participants throughout the research process.

However, in line with British Sociological Association (2002) guidelines, my own organisation’s child concern protocol and writings on ethics and research with children (Alderson and Morrow, 2004); I recognised that confidentiality for both

87 children and adults may have to be breached in extreme circumstances. For example, if participants disclosed something which indicated that they or others were at risk of significant harm. This was stated clearly in the information sheets (Appendices 2.1-2.6) given to all participants and explained during the initial meeting. This issue is linked inherently with discussions around power imbalances in research with children and is one potential issue that marks research with children from that with adults. It was necessary to think carefully about how to approach this. Like Thomas and O’Kane (1998) I strongly felt that children have their own views and priorities and ‘their own strategies for dealing with difficulties based on their own knowledge and experience’ (p340).

However, unlike Thomas and O’Kane (1998) I was bound by, and committed to, my organisation’s child protection procedures for safeguarding children and therefore, I was unwilling to guarantee complete confidentiality to my participants. Therefore, if such disclosures were made, guidance would have been sought from supervisors and, if appropriate, referrals made to the Child Concern Pathway linked to my organisation’s Good Practice Guidelines.

It is clear that mine is a view based on and influenced by my past work-based experiences and training, perhaps coming from what Hood et al. (1996) term ‘a social work agenda of child protection’. I accept that this standpoint can be seen to contradict my attempts to redress the possible power imbalance between adults and children within the research process. It may have been that in some circumstances I would have needed to ‘exert my power’ as a responsible adult by reporting and taking forward any such disclosures. But I also argue that the strong moral obligation I feel would be the same if a scenario arose whereby a disclosure was made by a vulnerable adult (Morrow and Richards, 1996). I was and I am, therefore, comfortable with my standpoint and accept that this position may have reduced my credibility in the eyes of the participants (Thomas and O’Kane, 1998) and could have affected the research relationship built between researcher and participant. However, I also question, in line with Morrow and Richards (1996), that this is unavoidable as children expect adults to behave in certain ways and, therefore, by not intervening in certain situations, adult researchers may, just as easily, lose credibility. My viewpoint influenced the type of researcher role that I felt able to adopt. I felt

88 unable to assume a ‘least adult’ role as advocated by Mandell (1988) whereby the researcher distances themselves from the position of adult in all ways other than that of physical size. As Mandell (1988:438) explains whilst taking the

‘least-adult’ role in her own research:

While my size dictated that I could never physically pass for a child, I endeavored [sic] to put aside ordinary forms of adult status and interaction - authority, verbal competency, cognitive, and social mastery – in order to follow their ways closely.

My stance, in terms of confidentiality and possible disclosures, further emphasised that I was unable to adopt this role so instead I attempted to adopt Christensen’s (2004) position of ‘a different sort of adult’. Therefore, I tried to retain a balance between acting as a responsible adult whilst maintaining a positive and respectful relationship with the children.

‘Public confidentiality’ (Hill, 2005) refers to ensuring anonymity to research participants whereby they are not identified in the dissemination of the project findings, for example, in research reports, presentations, journal articles and so forth. In my research, public confidentiality was upheld by changing participant’s names, the names of family members and of any friends, teachers or relatives that were mentioned and the names of any school, town or city.

Each child participant was given the option of choosing their own pseudonym to be used, rather than their real names, in analysis and subsequent publication of findings. Although confidentiality is high up the ethical agenda for most researchers it may be perceived in a different way by children. Morris (1998) comments on how some of the young people in her research were disappointed when they learnt that their names would not be used in publication. This also occurred in my own research. Two of the older girls, Grace Baker (13 years old, mild CP) and Ellen King (12 years old, younger sibling), were both noticeably disappointed that their own names would not be used with Ellen stating that she wanted her own name used because ‘I want to be famous’. In the end, after discussion with my supervisors, it was decided that Ellen could use her own first name as I was allocating a pseudonym for all the family surnames, hence

89 upholding public confidentiality but potentially denying Ellen her ‘chance of fame’.

Social network confidentiality refers to not passing on information to family members, friends or others known to the child (Hill, 2005). Network confidentiality is an important consideration in research with children and parents, as members of a family may wish to know what the others have said when they have been interviewed separately (Harden et al., 2010). It was a specific concern for me when I designed the research that I did not communicate information obtained through the data collection between members of the same family, as I anticipated that individuals would be curious as to what others in their family said. Specifically, parents may have wanted to know what their children had said.

When designing the research I consulted a number of lay advisors (see Section 4.6). During discussion with the lay advisor who was mother of a child with CP, I explained that, if possible, children would be interviewed on their own. When asked what she thought about this she commented that it depended on the age of the child and that younger children should be

‘chaperoned’. She also went on to say that:

…as a parent I think I would feel happier if I was in… to listen to what’s been said [laughs]… not that I’ve got anything to hide but just to make sure it’s all…

Hood et al. (1996) interviewed children and parents separately for their study exploring the ways in which risks to children are understood and managed by children and parents. They found that in their efforts to give children an equal voice with their parents, by talking to children separately, parent-child power relations were threatened. During their fieldwork a mother directly asked for feedback about what her child had said. As Hood et al. (1996) comment this may have been exacerbated by the research area of interest (i.e. risk) and a fear that the researcher was somehow checking up on the parents and their ability to protect their children. Interestingly, children themselves may also feel threatened and unsure of the researcher’s purpose. When asked her views on

90 interviewing children separately from parents my sibling lay advisor (11 years old) said:

I think I would feel more comfortable with my mum or dad [present]. It would probably be a bit easier as some things are a bit difficult to explain… it might… and I think mum would probably feel better if… I think everybody would feel better if they had someone with them, so that they can share.

This view intimates that young people may lack confidence or be unsure of their ability to participate meaningfully. Potential power imbalances and preconceived social constructions of the roles within the research process (i.e.

researcher, participant, adult, child) may lead to the researcher being placed within an ‘expert’ role. Children may, therefore, feel that they are not the experts and are unable to give the ‘correct’ answers or that the responses they do give are not good enough or will not be taken seriously. This links to Alderson and Goodey’s (1996) informal barriers to research which need to be negotiated throughout the research process. As well as children’s caution, mistrust and fear of giving the wrong answers Alderson and Goodey (1996) discuss the need to find the appropriate words for each respondent and to explore the meanings in the words children use. Therefore, it is of utmost importance that children are told that there are no right or wrong answers and to ensure that plenty of time and space is given for children to explore issues in ways that suit them. Multiple methods for data collection may be useful to tap into children’s own experiences and realities because this provides more opportunities for children to relay their experiences in various ways that can complement children’s differing competencies.

It is possible that parents and children in my study felt concerned about the purpose of the research, the subject area of sleep and the researcher’s

‘true’ motives. As Hood et al. (1996) comment conducting research in the home environment is difficult, entrenched with ideologies and emotions. In my mind this was further exacerbated by exploring sleep and the night-time as this is a fundamentally private and potentially sensitive time for families. Hood et al.

(1996) discuss how researchers can be perceived as invading the traditional

91 boundaries between the public and the private when entering the home to ask questions. In order to try and overcome some of these issues participants in my research (children and parents) were given the choice of whether they wanted to be interviewed alone and, if not, who they wanted to be present.

Prior to the individual interviews, I explained to children that there were no right or wrong answers to the questions, that they did not have to answer questions if they did not want to and that they were able to stop the interview at any time. In line with advice from Morris (1998) and Marchant et al. (1999), a way for children to indicate that they wanted a break or to stop the interview was rehearsed and this action was role played at the beginning of the children’s interviews.

Despite my preference to interview children on their own this was not dictated by me as this would be, as Alderson and Goodey (1996) explain, counter-productive and inhibiting. Marchant et al. (1999) suggest there are practical strategies that can be used and negotiated with parents when they were present at their child’s interviews. For instance, I ensured that all questions were asked directly to the young person, if parents attempted to answer I redirected this back to the young person (e.g. “your mum says that...”).

Marchant et al. (1999) also suggest asking parents to physically distance themselves during the child’s interview so, for instance, to sit further back if possible. However, I did not feel confident or comfortable in doing this.

Interestingly, a number of parents did automatically distance themselves physically during their child’s interview. For example, when I visited and interviewed Charlotte Appleby (child with severe CP) for the first time, her mother Sue stayed in the same room and sat next to Charlotte. When I visited to interview for the second and third (final) time, Sue ‘busied herself’ tidying up and popping in and out of the sitting room where the interview was held.

However, it was clear that Sue was still listening to the interview as there were occasions when she would interject with her own answers or prompt Charlotte to respond. Other parents did not attempt to distance themselves during their child’s interviews. For example, Aileen Edwards (mother) sat in on all three of her children’s interviews (child with CP and two siblings). This was decided on

92 through discussion with each of the children, however, I felt some uncertainty about the amount of real choice the three children felt they had. This was further reflected in my own research diary entries that noted that Aileen was quite dominant during the children’s interviews and that I had difficulty retaining the focus on the children’s own answers and responses. This is the reality of research with children and their families and despite planning and designing research that, it is hoped, facilitates the participation of children and upholds ethical standards it can turn out to be quite different in practic e.

4.8 Conclusion

This chapter has examined child-focussed research, as advocated by the ‘new’

sociology of childhood, as an approach to conducting research with children.

The way in which the researcher views children and childhood has been discussed as influential in terms of the research methods chosen and the ways that power and ethical issues are addressed. Despite a move towards adopting specific ‘child-friendly’ methods within the ‘new’ sociology of childhood some questions remain regarding their use. Instead methods should be chosen and used on the basis of them being ‘participant-friendly’ and also ‘fit for purpose’, in terms of the topic or subject area being researched (Punch, 2002).

Ethical issues should not be considered as pertinent only in research with children but in all social research and should be at the forefront of the researcher’s mind throughout the entire research process. However, as discussed there are factors relating to research with children that require specific ethical considerations because of the ways in which children and childhood are perceived at societal and cultural level. These issues are further highlighted and exacerbated when research includes disabled children. The ethical issues of power, the presence of adult gate-keepers and gaining access to children, informed consent, interviewing children alone and confidentiality were explored in this chapter with examples taken from this research project.

The value of consultation with lay advisors about what information to give to potential participants, ways to recruit, study methods and ethical issues such as confidentiality was also discussed.

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Chapter 5 - Research Methods 5.1 Research background

As discussed in Chapter 2, sleep as a sociological topic is now recognised as worthy of exploration (Williams, 2002, 2005; Hislop and Arber, 2003; Meadows, 2005; Meadows et al. 2008; Venn et al. 2008; Williams et al. 2010; Arber and Venn, 2011; Arber et al. 2012; Coveney, 2014; Venn et al. 2013; Zahrin, 2015).

This exploration of sleep has begun to infiltrate the sociology of childhood (for example, Moran-Ellis and Venn, 2007; Williams et al. 2007; Power et al., 2017).

These studies seek to analyse the experience of sleep from the child or young person’s point of view. However, this work has not extended to the experiences of sleep for children with disabilities.

The dominance of medical writing is striking within existing research on sleep and children with disabilities as discussed in Chapter 2. Such research reports that children with disabilities have a higher incidence of sleep problems compared with children without disabilities (Jan et al. 1994; Jan and Freeman, 2004). The majority of this research has relied on parental responses to sleep questionnaires and sleep diaries. Children with CP make up the largest group of children with a physical disability in the UK (Rosenbaum, 2003), yet there is very little research focusing on their sleep or the possible impacts of their sleep on other family members. Furthermore, no in-depth research has been conducted to examine the experiences of sleep from the viewpoint of children and young people with CP themselves. Additionally, there has been no research exploring the conceptualisation of sleep from multiple family members’

perspectives from within the same family, including both parents and children.

This is despite the assertion that sleep is embedded within family life and that potentially an exploration of sleep could provide novel information pertaining to family life (Williams et al., 2007).