Twenty-eight interviews with Muslim family carers were carried out at intervals over a period of sixteen months between May 2006 and September 2007. A further fifteen interviews were also carried out during this period with professionals, whose specific occupational role pertained to supporting Muslim family carers. This is discussed in section 3.10. Prior to entering the field, an interview guide was constructed to shape the interviews and align the questions with the research questions. The guide consisted of a set of open-ended questions (see Rugg and Petre (2007) for a useful discussion of constructing open-ended questions) that were kept either on my lap or on the table in front of me. Mason (2002: 67) argues that just because a researcher is planning a loosely structured or semi-structured interview, which is designed to feel like a ‘conversation with purpose’, does not mean that the interview structure does not require detailed and rigorous
123 planning. With recognition of this need, I made a detailed interview guide.14
The semi-structured nature of the interviews allowed the key areas of the research to be covered with each respondent (Britten, 1995; Bryman, 2001). At times these subjects were covered by the general flow of the conversation, so questions on the interview guide did not need to be specifically asked in all instances. Other participants were less vocal and the presence of the interview guide was able to support and encourage the talk. As discussed in section 3.3, the flexible nature of semi-structured interviews also allowed for the respondents to deviate and discuss topics that may not have been covered in the interview guide (Britten, 1995). A key aspect of the design of the interview guide was being aware of the language I used. Primarily, I avoided using abstract concepts, that the respondents might
misunderstand, which could produce misleading data (Mason, 2002). Additionally, I avoided using certain words that I considered could cause unease or may not be understood due to language barriers. For example, it was revealed to me during an interview with Kaleemah, a development worker from Organisation B, that there was no word for ‘relax’ in Urdu.
A large proportion of carers interviewed for this research were primarily Urdu speaking. I subsequently adapted the planned interview question
14
See Appendix 07 for a copy of the interview guide for carers and Appendix 08 for the interview guide for professionals.
124 ‘what do you do to relax?’ to ‘what do you do for fun?’ Additionally, I avoided using words such as ‘interview’, and replaced them with
‘conversation’ or ‘chat’ to assist in creating a non-judgemental, informal and safe space to speak. Gillham (2000) also alerts the interviewer to be aware of her or his behaviour when interviewing. He argues that an awareness of one’s body language is key to a successful interview. These include, listening rather than talking, being confident that interviews are sometimes slow to start, and not appearing anxious to ‘get a response’ (p.35).
The first part of the interview was designed as an ‘ice breaker’. This involved a set of questions that were easy to engage with and intended to establish an informal and friendly dynamic. I would ask about the person/people the respondent cares for and their name/names. Referring to the cared for relative(s) by their name assisted the interview in two ways: Firstly, it enabled an easier and more informal flow of conversation. This was especially pertinent for respondents caring for more than one person, whereby they did not need to keep reminding me of who was who. For example, Iqraam cares for three adult sons with learning disabilities. At the beginning of the interview we established the names and some general information about each son. It transpired that he had very different caring experiences with each son. Consequently, knowing the names and basic information about his sons enabled me to clearly follow the flow of his conversation. Secondly, it assisted in constructing a supportive and informal environment for the
125 carer to speak about their experiences. The aim of the interviews was to elicit the meaningful beliefs, experiences and perceptions from my respondents. This potentially required participants to speak in some depth about their personal lives. Referring to the carer and their families by their names at the outset of the interview contributed to creating a relaxed atmosphere.
Each respondent was also asked to describe a typical day from the time they get up to the time they go to bed. This question often produced some very interesting data about the participants experiences and perceptions of caring. Much of the overall data collected stemmed from responses to this question that were subsequently followed up by further questions. Rugg and Petre (2007) suggest that maintaining eye contact and not interrupting respondents are also useful methods for putting an interviewee at ease, which I attempted to follow throughout the duration of the interviews.
The interview then moved on to questions about accessing health and social services. Although these questions related to the second
research question, I was reticent to start the main body of the interview with potentially sensitive and personal questions about religious belief. Respondents were asked about health and social services accessed; how regularly they visited a doctor or other health practitioner and if their cared for relative attended a day centre or other types of formal social activities. This would naturally lead to conversations about if
126 these services were accessed, perceived and experienced.
Respondents were then asked about how they felt being Muslim affected these experiences.
The third section of the interview guide led quite naturally from the previous section about religious adherence and accessing services to more general questions about their religious beliefs. This began by asking participants the very open question: ‘What does being Muslim mean to you?’ This was a particularly interesting aspect of the interview. Although it does not refer to care, respondents would often provide long accounts of their religious beliefs about caring, illness and disability, which highlighted how important faith was for many of the carers in the study in shaping their perceptions of their caring role. Respondents were also asked to explain what they consider to be the Muslim teachings of care, illness and disability. Being non-Muslim was
particularly advantageous for this section of the interview because the respondent was always the ‘religious expert’, which meant that I was able to elicit clear, concise and detailed accounts of the respondents’ religious beliefs. Elam and Fenton (2003) address the advantages of being an outsider to the research group. They argue that respondents are often more likely to provide detailed accounts to ‘outsiders’, as it is often assumed that they have no prior knowledge of the subject.
The final section of the interview was designed to elicit data about the types of support networks available to the carer being interviewed. It
127 explored the role of the family in providing help and support for their caring role. Other possible support networks were also explored, such as the local Imam, Mosque, community group members and carers groups. Exploring the role of the carers’ organisation was particularly pertinent for many of the carers in the study as the majority of carers interviewed were accessed through their affiliation to a carer group. The interview closed with inviting respondents to add or speak about any issues not already covered.
At the start of each interview I gave each participant an information sheet to keep, which I also read aloud. It confirmed the details already explained to the respondent and reassured them that they would remain anonymous within the thesis and any other form of dissemination in the future. The information sheet also documented my name, telephone number and email address so that I could be contacted if a carer subsequently wished to discuss their inclusion in the research, or were worried about a their contribution (for a further discussion about the information sheet see 3.4.3, also see Appendix 06 for a copy of the information sheet). Interviews were recorded on small minidisk player with attached microphone. Stockdale (2002) provides an informative discussion on the types of recording equipment suitable for recording qualitative interviews, and advocates the use of a minidisk player for its transportability and high sound quality. Interviews lasted between 40 minutes and three hours. The interviews that lasted the longest were
128 usually due to the respondent providing in-depth accounts that they seemed to enjoy sharing.
Interviews either took place in the respondent’s home (sixteen interviews) or in the office space of a carers’ organisation (twelve interviews). Both situations had their own sets of challenges that will be addressed below. It was often not possible to interview a carer alone if they were interviewed at home. Many carers needed to attend to caring duties whilst responding to my questions. For example, Dunia cares for her son with severe learning and physical disabilities. Her husband works during the day leaving her to care for her son who needs consistent attention. The interview took place in her home while she went about her daily routines. The tape regularly had to be turned off and on so that she could carry out various caring duties. Katbamna et al. (1998) described similar experiences when interviewing Asian carers
in their homes. They argued that their respondents were still able to speak openly, even if family members were present. This was also observed in my research. Even though I at times found it distracting attempting to speak over the wails of a disabled child, the participants in the study remained focused and seemingly unperturbed throughout.
Interviews carried out in the offices of a carers’ organisation presented two main challenges. Firstly, interview times were much more restricted as carers often needed to return home to their caring duties. This meant that responses were sometimes less detailed than the interviews
129 carried out in a carer’s own home. Secondly, of the twelve interviews carried out in an office space, ten were carried out with the use of an interpreter. Some researchers question the viability of using interpreters for collecting data. Temple (1997: 614) argues that the use of
translators and interpreters: ‘is not merely a technical matter that has little bearing on the outcome. It is of epistemological consequence as it influences what is “found”’ (cited in Birbili, 2000). Careful consideration was given to my decision to include non-English speaking carers in the research, especially considering the possible threat to the reliability of the data collected. My final decision was based on my aim to
understand how services were accessed and experienced by the respondents in the study. Much existing literature suggests that
language barriers are a considerable contributor to the experiences of non-English speaking carers especially when attempting to access services and support (e.g. Ahmed and Rees Jones, 2008; Hasnain, 2008; Katbamna et al., 2004; Manthorpe et al., 2009; Owens and
Randhawa, 2004; Worth et al., 2009). I concluded that the responses of
both English and non-English speaking carers would provide a fuller understanding of the caring experiences of Muslim family carers
considering the financial and time restrictions imposed on the research.