Activismo

Inextricably linked to the discussion of adult gatekeepers in child-focussed research is the ethical issue of informed consent. Harden et al. (2000: para 2.24) comment that:

...‘informed consent’ [in research with children] is problematic not primarily because of children’s lack of understanding of research, but because their participation in any research project is dependent on adult gatekeepers.

Historically, research ‘about’ children has relied on gaining the consent of parents or other adult gatekeepers and has not attempted to obtain informed consent from children themselves. This was often based on socially constructed preconceptions that children (disabled and non-disabled) are unable or incompetent to make informed decisions, in line with a ‘developing child’ view as outlined by James (1995, cited in Morrow, 2008, see Section 4.2).

Davis et al. (2000) describe when, at the beginning of their observations of disabled children in school, they attempted to discuss issues of informed consent, confidentiality and so forth with staff and children. The school staff felt and argued that the children would not understand so there was no point trying to explain the research to them and, therefore, no way to obtain informed consent from them. Davis et al. (2000) felt strongly that staff were trying to

‘resocialise’ the researchers into believing that the children were incapable of thinking for themselves and they felt a pressure to conform to staff views or risk limiting the access they had gained to observe the children.

Much of the discussion around obtaining informed consent from children centres on the concept of competency. In the UK, the competency of children to consent to medical research and medical treatment is assessed with reference

83 to the Gillick 1985 ruling whereby competence is not assessed purely in terms of the child’s chronological age. Instead children are deemed as competent if they have ‘a sufficient understanding and intelligence to understand what is proposed’ and if they have ‘sufficient discretion to enable [him or her] to make a wise choice in his or her own interests’ (Alderson and Morrow, 2004: 99).

Morrow and Richards (1996) question how far it is possible to draw a comparison between consent to medical treatment with consent to participating in social research, but they highlight that the premise that competency is not based simply on chronological age is an important one. Other factors are important to consider when assessing a child’s competency to consent to participate in research such as context, what exactly the child is consenting to doing, the level of risk and harm and the potential benefits of taking part.

Competency to consent also depends on the researcher’s ability to relay information about the study in ways that can facilitate and enable understanding of what taking part entails. With specific reference to disabled children giving consent to participate in research, Morris (1998) comments that it depends on the information about the research being received and understood as well as on potential participants being able to respond. The values of respect, trust, clear information and good communication are considered key in obtaining informed consent from all potential participants. As Alderson and Morrow (2004) make clear, respect for consent or refusal helps to prevent harm and abuse.

For my research, I felt strongly that informed consent should and could be obtained from children as opposed to assent. Obtaining assent from children is often considered good enough with consent being obtained solely from parents or other adult gatekeepers. Alderson and Morrow (2004) argue that assent refers to agreement by children who understand some, but not all of the main issues required for consent. Like Alderson and Morrow (2004), I question whether this is good enough and whether ‘a partly informed decision can count as a decision at all…’ (p97). As mentioned above competency to consent depends, in part, on the quality and standard of the information given. For my research, I felt it was essential that the information that was given was truly accessible for all the children. Because of my uncertainties linked to the opt-in recruitment methods (discussed in Section 4.4) it was important for me to know

84 that informed consent came truly from the children. I, therefore, wanted to ensure that children acted as their own final gatekeepers in deciding whether they took part in the research or not. To do this I developed information sheets in a variety of formats. For children with CP this included a written version, a symbol version and an audio recorded version on CD (Appendices 2.1, 2.2, 2.3). For sibling (child) participants separate written versions were provided for older children and for younger children (Appendices 2.4 and 2.5) and a written version for parents (Appendix 2.6).

Unlike some research (e.g. Thomas and O’Kane, 1998) I did not need to contemplate a situation whereby children consent to participating but their parents (or other ‘gatekeeper’) do not. To take part in my research the index child with CP and at least one parent per family unit had to participate, as the purpose of the research was to gain multiple family members’ perspectives with regard to sleep. My approach, therefore, centred on gaining the consent of the child with CP first, consent from the parent second (with regard to their own participation), and then further consent from the parent in terms of their disabled child’s participation. Therefore, if a child made an informed decision not to participate I would not have approached the parent for either of their consents. I ensured that there were opportunities for the information regarding the study to be discussed and for participants to ask questions throughout the research process. Time was given for participants to consider their participation and consent and they were encouraged to discuss the research with friends or family members before making a decision.

Further to this it was regularly explained to participants that they may withdraw from the study at any time without giving a reason and without prejudice, and that if they did so, any information they had given would not be used without their permission. The giving of consent was considered a continual process, therefore, each time I met with participants I checked that they were happy to continue in the research.

The use of lay advisors has been advocated, when planning and designing research involving children, both disabled and non-disabled, as an useful way to think through ethical issues and research methods from the point

85 of view of children themselves. Four lay advisors were consulted prior to my research starting; their role is discussed in the next section.