Three research themes Keys to the ABI Cage
6.3 Alternate Ways to Conduct the Interview
‘Handy Thinking Tools’ were prepared to provide an alternative structure for the interviews for participants who did not appear to understand or enter into the spirit of ‘Keys to the ABI Cage’, and/or for participants who became ‘stuck’ on a particular problem or issue. Both ‘Handy Thinking Tools’ and ‘Keys to the ABI Cage’ are learning/discovery tools to assist the unpacking of the many facets of ABI: to provide a structured framework to build a discussion, to jog memory (before answering open-ended questions) to encourage reflection, self-discovery, thinking what coping strategies are used and could be used in the future, to provide a positive interesting experience, to lead the participant to learn new tools to use in their daily activities to understand issues and problems.
All participants responded well to ‘Keys to the ABI Cage’ except one participant who became stuck on the words on one ‘talk-about’ cards part way through the interview using ‘Keys to the ABI Cage’. Handy Thinking Tools was also used in discussions along with ‘Keys to the ABI Cage’ at a second meeting with ABI support groups. Professionals were introduced to Handy Thinking Tools and found them a valuable resource for discussions.
Method B: Handy Thinking about what it is like to have ABI
Handy Thinking Tools are tactile, tangible, mnemonic devices that utilise senses of touch, sight and hearing to reinforce analytical, practical, creative thinking about an issue or problem. Participants can learn to ‘count on their fingers’—digits of the hand can be used as symbols to prompt specific questions. Handy Thinking Tools can help in brainstorming and understanding of issues, and lead to the individual finding solutions and making informed decisions (Fig. 6.2).
Handy Thinking® Tools
THUMB: Pigeonhole it: Ask ‘What is it like to have ABI?’ (Sort, organise and group the problem or issue).
POINTER FINGER: Point out the facts: Ask ‘What are some facts that you know about ABI?’ ‘What facts would you like to know about having ABI?’ ‘What do you do/say to yourself to help you cope with your ABI?’
MIDDLE FINGER: Find the Feelings: Ask ‘What are some of the feelings you have about having ABI?’ ‘What do you do/say to yourself to help you cope with your feelings about ABI?’
RING FINGER: Judge the issue: Ask ‘What are the Good, Bad and Curious things about having ABI?’ ‘What are the bad things about having ABI?’ ‘Is there anything good that has come out of you having ABI?’
LITTLE FINGER: (this finger needs GROWTH—Great Original Wise Thinking) Ask ‘What have you discovered?’ ‘What has helped you cope with your ABI?’ ‘What could you do to help yourself in the future?’ ‘What advice would you give to someone with ABI?’
Method C: Advice to a friend with ABI
If the participants do not become engaged with either ‘Keys to the ABI Cage’ or ‘Handy Thinking Tools’ about what it is like to have ABI, they might be having difficulties with one of the following issues or problems, or another similar problem. Their problem could be written on a ‘talk-about’ cards and then they could talk about the issue. This method was prepared but not used in the Keys Study as Keys to the ABI Cage was readily adopted by the participants.
Once they had unpacked the issue, it was anticipated that participants might wish to engage with ‘Keys to ABI Cage’ or talk about ABI using ‘Handy Thinking Tools’.
The following issues have been identified in workshops with people with ABI over the past 15 years. If the participant did not want to talk about their own issues of ABI, they may be happy to give advice to one of the following ‘people’. ‘Talk-about’ cards could be looked through and a problem tackled to break the ice and get the participants talking.
Using ‘Handy Thinking Tools’, the participant could choose one of these problems or issues to unpack:
Sally: ‘I hate myself, I’m a waste of space’. Paul: ‘I don’t think I’ll ever feel better. Will I?’
Sean: ‘The OT kept telling me I wasn’t trying enough. It made me mad’.
Jim: ‘How can I deal with my temper?’
Sam: ‘I can’t stop crying. I’m so sad’.
Phillipa: ‘How can I deal with my sadness—I’ve lost myself and my life!’
Dean: ‘I can’t let go of awful thoughts’.
Brian: ‘My thinking—sometimes I think I’m crazy. I don’t understand’.
Heidi: ‘I keep jumping to conclusions. I was convinced my husband was having an affair—I saw it in a dream’.
Mark: ‘How can I learn to understand again?’
John: ‘I can’t understand what people say. I feel stupid’.
Christopher: ‘I can’t remember what day it is or even my own name. What can I do?’ Mary: ‘I’ve forgotten how to tell the time, what money is and how to work change out in a shop. What things could help me?’
6.4 The Sample
6.4.1 Sample Sizes
This study was primarily about the experiences of people with ABI at least two years post acquiring their brain injury. These people were engaged in their everyday lives once again. Confidence in the findings of the study was enhanced by triangulation of data—the employment of three different types of participants (sources) and two methods of data collection.
Participants were to include 30 people with ABI, five people who care for and support people with ABI (Note not referred to as carers—as the word carer implies unequal power) and five professionals. The latter two groups were included for the purposes of data triangulation (Denzin, 1970) and the different methods established methodological triangulation (Lincoln & Guba, 1985) to test the tool in different formats.
Data saturation was sought by the selection of the number of participants with ABI (Glaser & Strauss, 1967; Strauss & Corbin, 1998). This saturation ensures trustworthiness since no new concepts are obtained from additional interviews once saturation is reached. Various arguments have been made about what size sample achieves saturation (Mason, 2010; Morse, 1994; Creswell, 1998; Bertaux, 1981; Smith, 2004; Smith & Eatough, 2008). Given our wish to exemplify diverse experiences as well as collective experience, we established a sample size of 30 as noted above.
However as Durham still experiences difficulty with counting, in error, 36 people with brain injury were interviewed for the study, (in this case much to her supervisor, Ramcharan’s, satisfaction and mirth).
6.4.2 Type of Sample (Inclusion Criteria) of Participants with ABI
As the main aim of this study was to do no harm to participants, ethical considerations informed the inclusion criteria: participants with ABI and people who care for people with ABI needed to be willing to reflect on the ramifications of ABI without becoming too distressed; if a person with ABI was taking part in the study, the person who cares for and supports them could not take part in the study, or vice versa. Participants needed to be able to understand the Plain Language Statement about the study, and be able to participate meaningfully with words or actions; they needed to be between the ages of 19 and 60 years; they should not be in a fragile state, stressed or in the midst of a crisis, nor awaiting a court case related to any accident associated with their ABI in 2009 (the year the interviews were conducted). Participants needed to be willing to have the interview tape-recorded. In order to reassure participants that their privacy would not be invaded, they were specifically not asked their age, occupation and so forth and all data was deidentified and circumstances sufficiently disguised so as not to give away their identity. The participants with ABI were to be between 2 and 14 years post-injury. The majority of participants with ABI were in their 20s and 30s, their brain injury was caused by a motor vehicle accident (i.e. brain injury acquired from the year 2000 plus), and they acquired their brain injury between two and eight years previously.
Participants were recruited from information placed in a broad range of brain injury support group newsletters and websites in both city and rural areas. A major feature of this research is that it had no connection to ‘traditional’ sources of participants where the participant may have felt services/support could be compromised by their statements.
We have decided not to follow convention and detail demographic and disability characteristics of the sample. Disability (what impairments each person has), under a social model, is considered less important than the experiences they related around their struggles with everyday life. Given the analysis undertaken, we considered ex post facto what role demographics would have played in our analysis. The answer was that they would have played very little part—the focus was on the recurrence of themes in their experience which they guided in the choice of ‘talk-about’ cards which were selected from the ABI Cage. The small study sample would also have made it difficult to make sense of causation or even influence sufficient to satisfy a scientific critique. In some senses the gratuitous use of data not used later seemed to us an unusual approach for these reasons.
The sample was therefore a non-probability sample and was purposive, requiring participants with particular characteristics to participate in the study. The sample might also be categorised as a criterion sample in that only a specific group, a group that met the study criteria from among the ABI population, was recruited for the study.
The sample resultant from the above approach is summarised in Fig. 6.3 in which we identify the data collection strategies used across each participant group.
Methods of data collection
6.5 Interviews and Their Importance
It will be noted that the data collected from the PowerPoint Reflection Kit came in written form and this did not allow the same detail nor discussion that might have been used in a face-to-face interview. The approach therefore allowed some comparison of the two approaches. Ideally interviews would have been preferred and the opportunity to engage in narrative and life story discussions. As argued previously, learning often takes place in interaction and discussion with others through a process of reflection and then safe testing out of ideas and actions.
Life stories are important to everyone as they provide an opportunity for the person to express who they are, their sense of self and allow others to understand who we are and how we got that way (Linde, 1993; Widdershoven, 1993); therefore, Keys to the ABI Cage was developed to scaffold the person’s thinking to tell the story of their experience.
Such interviewing involves unpacking and exploration of the participant’s experiences and lifeworld and led to greater understanding. Creswell’s (1998) ‘qualities of caring’ was adopted: which the participant was viewed as a valued person, their comfort and security was paramount. The interviewer gave freely of themselves in conversation (Creswell, 1998). The researcher listened carefully, to ‘hear’ data, to have an ‘ear’ for what the participants were saying and focused on what they found to be important or unimportant in their search for meaning (Hermanowiscz, 2002). The interview was limited to one hour rather than a maximum of 90 min (Seidman, 2006), because people with ABI may be experiencing fatigue, emotional, cognitive and physical difficulties, and difficulty travelling to an interview. Pre- and post-interview phone calls allowed rapport to develop, and ‘Some Further Thoughts’ sheets gave the participants time to reflect on issues after the interview. Seidman’s tips to direct the interview (2006, pp. 81–93) were followed. These included: Respond to the interviewee, but do not lead the response to the question; Do not interrupt the participant while they are speaking; Ask them to tell a story about a particular part of the experience. Be patient; do not fill the silences—give them time to think and respond.
6.6 Keys to the ABI Cage—The Study Procedure
Brain injury support organisations were contacted by phone and asked to place an advertisement in their newsletter. People with ABI, family carers and professionals were all invited to ring and register their interest, and they were then contacted by phone. If they fitted the inclusion criteria, they were sent a letter that set out the inclusion/exclusion criteria and Plain Language Statement which detailed the research, and two Informed Consent Forms to be witnessed (one to keep and one to send to Durham). Once the signed consent sheet was received, Durham phoned and negotiated a time for the interview or discussed sending the Reflection Kit. In the case of interviews, a telephone call was made the day before the interview to make sure it was still suitable and to remind them of the time and place of the meeting.