The parent interview This was in two parts: 1 Part 1: Unstructured interview

‘Unstructured’ is perhaps a misnomer inasmuch as all interviews are structured in some way - “the interviewer (mostly) asks questions and the interviewee (mostly) responds to them” (Braun & Clarke, 2013, p. 78). Unstructured interviews have been referred to as controlled conversations (Jamshed,2014) with the aim of gathering in-depth information. The use of this approach in the current study enabled maximum sensitivity to concerns and opportunity for the participants to talk about aspects of participation that mattered most to them. This approach is useful when there is little known about a topic (Barker, Pistrang & Elliott 2002) as there is no pre-arranged schedule of researcher-decided questions. It can provide rich and detailed information, and allow for exploration of any unanticipated and unexpected findings (Smith et al., 2009).

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3.4.2.2. Part 2: Structured questionnaire

The second part of the interview continued with the use of an adapted structured questionnaire. This was chosen to complement information gained from the unstructured interviews. The rationale was one of seeking ‘completeness’ (Bryman, 2006) – bringing together a more comprehensive account of parental experiences of participation. The researcher anticipated that parents may have significant information and views about a wide range of issues associated with their child’s participation which might not necessarily be immediately recalled or voiced during the unstructured part of the interview. The questionnaire, The Child and Family Follow-up Survey, (Bedell, 2004) is described below. The researcher wished to adapt its use to fit with the study’s social constructionist epistemology but was concerned about using it in an unorthodox way. No exemplars for guidance were available but encouragement was provided by Frith and Gleeson (2012):

“No method should be fixed and inflexible, and most can be adapted, modified and altered to fit the particular needs of any research situation. Indeed, the most successful methodologies are those that allow for development and creativity. It is this adaptability that enables the researcher to ‘fit’ the method to their epistemology, to their research question, to their own skills, experience and ways of being in the world, to their participants and to the kinds of knowledge that they aim to produce. It is this adaptability that allows us to generate innovative, insightful and useful knowledge.” (p.55)

3.4.2.2.1. The Child and Family Follow-up Survey (CFFS) (Bedell, 2004)

The CFFS(Bedell, 2004) was developed in North America specifically to monitor and assess long term outcomes in activities and participation for children and young people with ABI following return home after residential rehabilitation. It was designed as a survey to be given to parents for self-completion, to provide information about a child’s current activities, needs and services and the wider family’s needs and services. It is based on the 9 domains in the ICF relating to participation and activity in everyday life, as described in the previous chapter (Bedell, 2009). It consists mainly of fixed-choice items relating to the child’s health and functioning, home and community participation, problems experienced in everyday life, and current services.

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The CFFS (Appendix 3) is one of a very few measures of participation that has been found to have good coverage of all nine domains of the Participation and Activity component of the ICF/CY (McConachie et al., 2006; Adolfsson et al., 2011; WHO 2013). It was for this reason that it was selected for use in the current study, to serve as a ‘platform’ on which to gather more qualitative data. Data from the fixed response items were used descriptively in their word form and integrated during the discussion stage, but the prime interest relating to use of the questionnaire was the follow-up open-ended probing (see below) which was integrated during the analysis stage.

3.4.2.2.2. Development of the CFFS: follow-up probes

It is common to include an ‘any other comments?’ question at the end of questionnaires (O’Cathain & Thomas, 2004), as is part of the CFFS (Bedell, 2004). This is often a cursory exercise, and part of a debriefing process (Braun & Clarke, 2013). Waiting until the end of a detailed and wide-ranging survey may not make it easy for parents to express themselves in their own way if they so wish, to any of the items, nor provide detail so richly as might be possible in response to the immediacy of the issue being raised in the survey. It was considered that providing opportunity for the current study’s parent participants to comment throughout the process of completing the questionnaire, as well as ‘any other comments?’ at the end could enable elaboration of issues to provide enhanced “breadth and representativeness of coverage of the phenomenon” (Singer & Couper, 2017, p.116).

Open ended probing is common in qualitative interviewing although not so common in fixed- response questionnaires (Singer & Couper, 2017), but it is not new. As long ago as the 1940’s Lazarsfeld, described as “the founder of modern empirical sociology” (Jerábek, 2001, p. 229), advocated including ‘open interview’ probes in what he called ‘straight poll’ interviews, to elicit qualitative information. “Research progress consists of the art of doing things which at first seem incompatible. Good research consists of weaving back and forth between open interviews and more cut-and-dried procedures.” (Lazarsfeld, 1944, p. 50). Schuman (1966) developed Lazarfeld’s idea of follow-up probes for eliciting qualitative information, prompted by fixed response survey questions. The probe doesn’t replace the closed question but follows immediately after the respondent has made a choice from the options available. Non- directive phrases are used by the interviewer for the respondent to indicate what they had in

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mind when making their choice. Schuman (1966) emphasises that the exact wording of the probe is not as important as the way in which it is posed - it is particularly important that the respondent's choice to the fixed-response question is not perceived as being challenged. In the current study, tone of voice, nodding and facial response were used to affirm all respondents choices.

3.4.2.2.3. Piloting of the CFFS with follow-up probes

Two parents (mothers) with children with ABI who had received residential rehabilitation a few years previously were approached and asked if they would be willing to pilot the questionnaire and follow-up probes which they agreed to. During the pilot interviews, they were invited to comment on any of the items. The feedback at the end was generally positive. Their information endorsed the proposal to include open-ended probing; they had both wanted to provide more information on a number of the items, to help explain the reasons for their choice to pre-defined response options. One parent commented on the difficulty of making fixed choices to some of the questions “as if it was black and white – it’s rarely like that”.

A couple of the questions in the survey’s environment-related section are personal and sensitive, referring to family finances and level of family stress. The parents who piloted the survey did not indicate discomfort answering them, despite the researcher’s concern about including them. However, to avoid possible embarrassment or discomfort on the part of parent participants, it was decided to include a verbal reminder, at the beginning of the section, in addition to the start of the survey, about choosing to ‘pass’ on any questions that parents did not wish to comment on.