This was a very small-scale study that identified a range of supports and barriers for participation.
There was a low response rate to parental invitations to take part in the study. Reference has already been made to parental burden associated with caring for a child with severe ABI, suggesting response to anything other than essential daily transactions may be ignored. The restriction by the NHS ethics committee for no direct contact to be made with potential parent participants by the researcher may have contributed to the low response rate. Each of the parents were mothers which may bias the results to maternal experiences rather than parental experiences. Also, the parents were white and of Anglo-Saxon origin. Experiences and understanding of participation may be very different in families from different racial, ethnic or cultural backgrounds.
The current study only collected information at one point in time. This gives limited indication of needs over time.
The accuracy of participant recall of some events and feelings about what happened, sometimes many months after the event, could be perceived as a limitation. However, the researcher was more interested in the participants interpretations and constructions of meaning of their experiences and did not therefore consider this to be a limitation.
Limitations of the child participants cognitive-communication skills have been discussed in relation to exploring ways in which eliciting their views could be enhanced. Their difficulties placed limitations on reporting their participatory experiences but this initiated the researcher’s further interrogation of the literature to help understand those limitations. An additional highly relevant dimension to the current study could perhaps have been achieved through interviews with local authority educational psychologists. Although invited to do so by the rehabilitation service, no local EPs had been actively engaged with the study children’s return to school. Also no involvement of local EP services had been sought by schools for a number of reasons (Extensive involvement by the rehabilitation programme’s own EP service; training and information for school staff by the rehabilitation service which continued to be referred to and satisfied schools current perceived needs regarding EP
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support; awareness of limited number of hours available from local authority EP services so schools wanted to ‘save up’ EP time for more urgent occasions; unawareness of the potential capacity of EPs for supporting children with mental health difficulties.)
Another limitation inherent to qualitative research is the researcher subjectivity, and how that might have influenced results. The results chapter describes the apparent dis-interest by one of the teenage child participants and the researcher’s interpretation of his behaviour. However, his disgruntled attitude and perfunctory responses may have been a manifestation of a range of factors related to general attitude, well-being, fatigue, how his school day had gone, or ‘being a teenager’!
5.9. Future directions for research
Difficulties adapting to acquired disability in childhood appear to significantly interfere with successful participation. Research with adults indicates that those with congenital disabilities are better adapted than those with acquired disabilities. A literature search suggests a paucity of research or models to help explain the process of adapting to acquired disability in adulthood (Brands et al., 2012), but there appears to be a complete absence of processes or models in childhood. This is an important, complex aspect of childhood ABI in which research is much needed. Understanding differences relating to identity, self-efficacy, motivation and self-esteem between children with congenital disability and children with acquired disability could provide a key basis for enhancing the mental health and well-being of children with ABI. A child’s home, school and local community are important influences on participation. Further exploration of the dimensions of these contexts may help to identify additional factors impacting on participatory experiences. For example, there were considerable differences of the extent to which Ben’s and Jack’s school responded to participation needs. A larger study comparing participation at different key stages may contribute to enhanced understanding of associated factors.
The current study related to children with severe ABI who were known to external support agencies. By virtue of their residential stay on the specialist ABI rehabilitation programme, discharge planning meetings were held in the child’s locality with invitations extended to a range of local professionals. However, most children with severe ABI are discharged directly
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home from acute care without the benefit of any educational planning, multi-disciplinary discharge meeting, or supports in place (Tomlin, Clarke, Robinson & Roach, 2002). The study children are therefore part of an atypical population of children with severe ABI. Increased understanding of participation of children with severe ABI could therefore be enhanced by including the more typical population of children with severe ABI who do not receive any formal rehabilitation.
The parental perspectives on participation were reported by mothers. As indicated above, the perspectives of fathers may provide additional information, as may including the views of siblings and peers.
Future directions in research to elicit the voice of children with severe ABI
Including participants subjective experiences and views is essential for a wider understanding of their participation and would increase the validity of the construct of participation. As was borne out in the current study, it is extremely challenging for young people with severe ABI to provide views that require autobiographical memory i.e. recollection of personally experienced past events, and out-of-context recall. Also, communication following severe ABI is commonly indicative of literal thinking, and restriction to the ‘here and now’. Many other aspects of compromised cognitive functioning such as attention, and information processing and excessive fatigue contribute to the difficulties. The construct of participation includes situational understanding (the perception of environmental elements – knowing what is going on around the individual) which is an abstract concept. Difficulties with the child participants recall and communication were not unexpected given what is known about sequalae following severe injury, and hence the use of Digital Talking Mats to elicit their views. ‘Ecological Momentary Assessment’ (EMA), sometimes referred to as the ‘Experience Sampling Method’ (ESM) may be a more appropriate technique for gathering their views about participatory experiences. EMA is a set of methods derived from social psychology research (Stone & Shiffman, 1994), which helps researchers gather participants views in ‘real time’ (or close to it) in the environments in which their thoughts, feelings and activities naturally occur, so avoiding a reliance on retrospective and out-of-context recall (Shiffman, 2009). Use of this technique would also provide more comprehensive and pertinent information about the two dimensions of participation referred to in the literature review –
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doing an activity, and the subjective experience of involvement (Granlund et al., 2012 ). The method also provides for more richness when information is collected at a number of different points rather than just relying on one point of time.
A number of additional factors may enhance the elicitation of the voice of this population such as a longer ‘lead’ time for the child participants and the researcher to develop rapport, as well as the child’s greater familiarity with the tools used to support communication. Learning how to express an opinion involves a developmental progression (Shier, 2001), and increased familiarity with appropriate techniques for doing so would also be beneficial. Interviews held at a time of day when child participants are most alert may reduce the influence of excessive fatigue on cognitive functioning.
Some degree of analysis of adult data prior to interviewing child participants would have highlighted issues related to the participation of each child. Interviews with child participants could then have focused on a more meaningful and restricted number of (Talking Mat) items associated with those raised by the adults, rather than them being presented with a generic set. For example, it may have been useful to explore Ben’s views about the removal of P.E. from his school timetable (because of the length of time it took him to get changed) which his mother said had now been replaced by extra Maths support. Also his views, as a teenager, about current arrangements for travel to and from school with his mother, and other aspects of his daily transactions such as full-time TA support that may have implications for peer contact.