The recruitment process began following ethics approval from the RPAH Ethics Review Committee (Protocol No X08-0051/HREC Ref.08/RPAH/89) and The University of Sydney Human Research Ethics Committee. Minor emendations were made over the course of the study (see Appendix A for copies of ethics approval letters). Recruitment adopted an arm‟s length approach whereby a Stroke Case Manager in the RPAH Department of Neurology (not directly associated with the study) identified appropriate stroke survivors who had been discharged from the hospital within the last 3 years due to the convenient accessibility of these records.
Identified caregivers and stroke survivors were either mailed (if post-discharge), or handed (by the Stroke Case Manager) upon discharge, a cover letter signed by the Head of Neurology inviting them to consider participation in the study, an information sheet, and a consent form (see Appendix B for copies of cover letters, participant information sheets and consent forms). Caregivers and stroke survivors consenting to participate were instructed to return the consent form in the reply-paid envelope provided, to the hospital. Contact details of consenting stroke survivors were then provided to the researcher. Individuals also had the option of contacting the researcher directly.
Following this, the researcher then telephoned individuals to answer any questions, ensure they met inclusion criteria for the study, and to organise an interview time and venue. Following several ethics amendments and liaison with various staff and sites, other recruitment sites were approached half way through data collection to ensure an adequate sample size was available. These sites included Balmain Rehabilitation Hospital and the RPAH Speech Pathology Department. Only 2 caregivers, however, were recruited from these sites. In the later stages of
data collection reminder letters about the study were mailed to patients from 2008-2009 RPAH patient lists (see Appendix B for a copy of the reminder letter).
The RPAH Cardiovascular, Physiotherapy and Dietician Departments, Concord Hospital and The George Institute Cardiovascular Clinic were approached but did not take part in the study. A flowchart of the recruitment stages is illustrated in Figure 2, section 3.1.
2.3.2 Development of the interview guide
All semi-structured interviews were conducted with the assistance of two interview guides, one for caregivers and one for stroke survivors. Prior to conducting interviews, a practice session was piloted with another qualitative researcher not involved in the study, using a draft interview guide to obtain practice and feedback on the process and content of the interview. The original versions included topics that strongly tied in with the research questions outlined earlier, which is essential in qualitative research (Leedy & Ormrod, 2005), and both covered the same topics to ensure consistency of themes. The main topics for both guides included:
The various psychosocial changes that may have occurred in various areas such as emotional and social functioning, and over different time points including the acute hospital and rehabilitation stay, the first weeks following discharge and the months following the stroke.
Access and evaluation of formal support services over the course of stroke recovery and caregiving.
This pilot interview lasted 60 minutes with the independent researcher playing the role of the caregiver while the chief researcher of this project was the interviewer. Following the insights and feedback that emerged from this pilot session modifications to the interview guide included:
Making questions more specific and open ended than solely topic headings in order to facilitate flow and transition during interviews. For example in the case of the topic heading “relationship/closeness”, the original sentence was “How has life changed for you (if at all) since the stroke? Specifically changes in your relationship with the stroke survivor?” This latter question was adapted to a more detailed question: “What about changes in closeness or getting along (appreciation, liking)?”
Reducing the number of questions/areas within the interview guide to 10 to ensure all the important areas were covered and that the duration of interviews was within 30-60 minutes.
Importantly though, the interview questions were used flexibly throughout this study, and at times the caregivers‟ and stroke survivors‟ own language styles were adopted, and their own comments re-stated and incorporated into further questioning, e.g. “And you also mentioned you don‟t see your friends as much, have your friendships changed?” In addition to the main interview questions used which initiated and guided conversation, were probe and follow up questions (e.g. “Tell me more about that” or “You mentioned earlier some emotional difficulties, can you tell me more about that?”) which clarified responses and encouraged elaboration (Bowling, 2002). Key topics that were not mentioned spontaneously by caregivers and stroke survivors but central to the research aims were probed for by the interviewer, for example, asking open-ended questions about any changes in social activities or emotional functioning that had
occurred since stroke-related caregiving had begun (see Appendix C for copies of the final interview guides used in this study).
2.3.3 The interview process
Once caregivers were approached and informed consent obtained, individual interviews took place and were audio recorded. The duration of interviews ranged from 30 minutes to 2 hours in length, with an average time of 60 minutes per interview. Each caregiver was interviewed once, and caregivers were free to stop the interview at any time. Interviews for caregivers occurred in appropriate meeting rooms either within RPAH, The George Institute for International Health, The University of Sydney or at the caregivers‟ home following stringent safety procedures outlined within the RPAH and University of Sydney ethics protocols (see Appendix C for a copy of this home interview protocol). Interviews were completed separately, with caregiver interviews conducted prior to interviews with the stroke survivor.
Interviews with stroke survivors followed the same procedure as caregivers with the exception that the interviews lasted for a shorter period, on average for 30 minutes, and on two occasions were conducted within a nursing home.
All interviews were guided by the interview schedule but for the most part, were directed by the participant, who was allowed to concentrate on issues that they found most important. At the very end of each interview, standardised demographic information was gathered such as age, gender, marital status, relationship to stroke survivor/caregiver, ethnic background and type of caregiving duties (see Appendix C for a copy of the demographic forms used for caregivers and stroke survivors, respectively). Audio recording continued during this phase of the interview session to capture any further information that may have been revealed. Each caregiver and stroke
survivor who participated was reimbursed with a $20 shopping/petrol voucher at the end of the interview. Immediately following each interview, some fieldnotes were taken by the interviewer (Leedy & Ormrod, 2005). These fieldnotes described any notable features of the surrounding environment such as noise or interruptions, rapport between the researcher and participant, any key themes or interpretations that emerged such as „emotional functioning‟, and important nonverbal and behavioural responses made by the participant, such as if they were tearful or had a depressed affect.