This aim led to the research question: What are the experiences of those who provide care for a relative diagnosed with bipolar disorder?
The findings elicited from this research question contributed to the Stage Two development of the intervention.
46 3.9 Stage One Ethical Considerations
Ethical approval was sought from the relevant research ethics committee of the School Ethics Research Panel for the Nursing Department at Robert Gordon University prior to starting the study, including negotiation of access to relevant care support groups and organisations. Information sheets and consent forms (Appendices 1 and 2) were provided to each participant along with a face-to-face detailed explanation of the study, including voluntary participation, withdrawal and confidentiality.
Participant contact with carer services allowed for prior knowledge and understanding of these resources in the event that anyone taking part would wish to utilise these services.
Participants were given a debrief sheet (Appendix 3) which included contact details of the researcher and information of local carer services that were made aware of the study prior to operations to ensure that any needs that may arise from participation in the study could be met and dealt with efficiently from appropriate pre-informed services. All data collected was analysed, anonymised, reported and held securely in accordance with the Data Protection Act (1998) and Robert Gordon University Research Ethics Governance (2014).
With regards to the potential sensitive nature of the research the
participants were not re-approached to verify the hermeneutic analysis in a follow up once the analysis was complete, as is suggested in
Gadamerian approach (Gadamer 1998; Austgard 2012). This was to avoid subjecting participants to possible discomfort as the nature of what they discussed could at times be difficult and affirming the conceptualisations of their experiences have the potential to be a negative experience (Lee 1993). Engaging in an interview of any kind where the nature of the focus is sensitive, those being interviewed may find the experience cathartic but secondary and subsequent encounters with the same topic or researcher can disrupt this process (Liamputtong 2007).
Re-experiencing the disclosure of sensitive issues can coerce participants to relive negative thoughts or feelings that may have culminated following
47 interviews (Lee-Treweek and Linkogle 2000). If a person has not had the opportunity to talk openly and honestly prior to being interviewed, they may require time to reflect and re-adjust in the time following this
experience and should be regarded as more vulnerable whilst this process occurs (Lee 1993; Liamputtong 2007).
For the researcher, the University counselling services were made aware of the study should they wish to contact them and continual debriefs with the supervisory team were made available.
3.10 Stage One Procedure 3.10.1 Gaining Access
Six informal caregivers of relatives with BD living in the Grampian region of Scotland were recruited to participate in the study; three through contact with local carer services and three through opportunistic word of mouth. Those recruited from carer centres were contacted via a stated liaison for each organisation who was informed of the study and made those who fit the participant criteria aware of the opportunity to
participate and presented them with an information sheet and contact information of the researcher.
Initiating contact via patients with BD was not selected as a recruitment method as the caregivers may have felt obliged to take part if their care recipient approached them with the opportunity and could be construed as coercion (Eldridge and Kerry 2012). Recruitment within the hospitals were limited to designated carer support areas and not outwith as caregivers visiting hospitals may be there under strenuous or stressful situations such as care recipient diagnosis or re-admission. Such events exert a high degree of burden for caregivers and attempted recruitment at such a time would violate non-maleficence (O’Mathúna 2012).
Those recruited through opportunistic word of mouth were those who had heard of the study through indirect means such as friends of colleagues of the researcher. They too were provided with an information sheet and contact information through their personal connection. All participants
48 who wished to take part initiated contact with the researcher and were then provided with the opportunity to ask any questions. A mutually agreed upon date, time and location for their interview was then established.
3.10.2 Sample Population
All participants were purposively sampled as informants for studies investigating lived experience are concerned with a particular phenomenon (Newing, Eagle and Puri 2011), in this instance the
phenomenon of interest was the experience of providing care for a relative with BD. Therefore, those with such experience were targeted as the intercept population.
Six informants who met the inclusion criteria were interviewed for the purpose of the study. Four participants were female and two male with a mean age of sixty four. Four participants were spousal caregivers and two provided care for adult children. The diagnosis for the care recipients varied between ten months and thirty years. All participants recognised themselves to be white English speakers and provided informed written consent prior to engaging in the study.
3.10.3 Data Collection and Engagement
The semi-structured interviewing method was selected as it enables participants to articulate their experiences from their own perspective, allowing the researcher to examine the phenomenon in context, and to generate a deeper understanding from the participant's own accounts of meanings attributed to their experience, as well as understanding their own framework of reference. Structured interviews would not allow for an in-depth response as they are overly restrictive in structure, and an unstructured interview could fail to guide the participant enough when responding to questions leading to digression (Ayala and Elder 2011).
The semi-structured intercept interviews were constructed to subjectively evaluate the views, experiences and difficulties experienced by informal carers to ensure that data collected could contribute to a more
person-49 centred solution focused intervention which is reported to yield a greater effectiveness compared to an objective approach (Chambers, Ryan and Connor 2001).
Participants took part in individual semi-structured in depth interviews that lasted between forty-seven and eighty minutes with a mean length of fifty-eight minutes in a private room at the Robert Gordon University except for one participant who requested a private location close to their home as their own health limited the ability to travel. All participants were offered the choice of being interviewed at the university, in their own home or another location of their choice where they felt they had privacy to talk. No hand held notes were taken during the interview to ensure that participants felt respected and attended to (Mearns and Thorne 2007;
Gerrish and Lacey 2010) however the researcher filled out notes in a reflexive journal following each interview to ensure that thoughts and feelings were captured imminently. The following is an excerpt from the researcher’s journal written after an interview to illustrate the early stage of data engagement:
‘Julia (Pseudonym) was so open and honest about her
experiences that it’s really humbling to speak with her about them. When she spoke about no longer recognising her husband and how she sees him fading away, it was almost like talking to a widow. She did speak of more positive things too though and it’s quite incredible how she’s adapted to the role and it sounds like her life is one big military operation.
I’m really glad that I’ve had experience in talking to people who have experienced hardship as I think otherwise I would have been prone to trying to comfort her while she spoke, tell her everything was okay. My heart really goes out to this woman. I suppose that such a moving story can provide a lot of good data. I hope the end product of this study does
justice for people like her. Dickson-Swift (2007) mentions the feelings of privilege following listening to such an experience and this rings true for how I feel right now.’
In this instance, the study of previous literature contributed to the
development of the interview schedule used (e.g. Dore and Romans 2001;
Deekan et al. 2003; Brouwer et al. 1999; Goossens et al. 2008; van der Voort, Goossens, and van der Bijl 2009) (See Appendix 4) to ensure that
50 appropriate questions were asked (Gadamer 1998). The schedule was also piloted with two people who had been informal caregivers to a person with BD. This led to a rewording of two questions in regards to lexical
complexity and omission of one question that appeared to be too open-ended due to individual interpretations of what the question was asking.
This refinement following the internal piloting of the schedule is consistent with Gadamer’s assertion of asking the right questions (Koch 1996). In alignment with the importance of language used to form the spoken word of the person being understood, the researcher must ensure that the words they use are congruent and consistent with their own intentions to reduce ambiguity between those in the dialogue (Gadamer 1976).
Prior to audio recording the interview, the researcher introduced himself, the purpose of the study and ensured the participants were informed and consented to continuing. Each participant was asked the questions from the interview schedule throughout their interviews but beyond this structure participants were encouraged to talk in depth about their own experiences and perceptions of their role. Open ended questions and reflection were used to facilitate the participants and consequently gain a richer verbalisation of their perspectives (Platt and Gaspar 2001).
Open ended questions can encourage someone being listened to and to elaborate beyond affirmation and refutation of closed questions (Curwen, Palmer and Ruddell 2000). Reflection is also a very beneficial method whilst undertaking interviews as rewording of what a participant has said and saying it back to them in your own words allows them to accept or decline this personal interpretation. This validates the fusion of horizons or allows for the researcher to be corrected and realigned with the
participant’s own horizon (Mearns and Thorne 2007). The process of
reflection also allows a person being listened to, to recognise that they are being understood which can facilitate the process of self-actualisation and lead them to report greater content and quality of lived experiences (Platt and Gaspar 2001).
51 The interviews were digitally recorded and transcribed (See Appendix 5) then dwelled with repeatedly by the researcher to facilitate a deep
understanding of the experiences of the participants (Koch 1996). At this point, the first stage of analysis was operated through NVivo 9 to manage the volume of generated data and make sense of it. Dwelling with data is an integral component of hermeneutics as the data is so rich that
experience and familiarity with the texts are a required first step to ensuring that the horizon of the researcher can be open and receptive to change, allowing the accrual of understandings through fusing their horizon with that of those listened to (Dowling 2007; Finlay 2011; Kafle 2011).
Key themes were identified and quotes from the scripts were placed accordingly within a categorising structure. These quotes were then read in their themes and the transcripts were re-read to ensure that the data still made sense and were congruent with individual interpretations for each participant (See Appendix 6). By collating quotes that share meanings and grouping them, the researcher is able to conceptualise a facet of lived experience. This method facilitates the re-structuring of the experiences heard by the researcher from their core components to create a meaningful and holistic understanding (Applebaum 2012).
From transcription to engaging with the individual interpretations and whole transcripts, the process in its entirety is to engage within the hermeneutic circle (Annells 1996; Fleming, Gaidys and Robb 2003;
Debesay, Nåden and Slettebø 2008). The lived experiences of the
participants can only truly be understood in this way as a fusion of horizon can only occur when the researcher opens themselves to the new
experiences and understands them in their own way, through which their own horizon is re-shaped to a new way of understanding (Van Manen 1997; Finlay 2011). Engagement in the hermeneutic circle resulted in the combination of two minor themes and the omission of three other minor themes due to levels of overlap and low concurrence between responses between participants regarding these themes.
52 Following the amendments made to ensure the reciprocity of the
hermeneutic circle, the remaining themes were conceptualised with representative quotes from the participant transcripts and these themes were then organised in to a conceptual model to reflect the lived
experiences of those caring for a relative with BD. The participant
transcripts, individual interpretations and quotations organised in to the major themes were then re-dwelled with to ensure that they remained congruent with the conceptual model and the hermeneutic circle was uninterrupted (Gadamer 1998; Binding and Tapp 2008). It is important to check fit with the hermeneutic circle and all stages of data accrual,
processing and reconceptualisations to enhance the methodological legitimation of the study and producing valid and meaningful results (Annells 1996; Koch 1996; Prasad 2002).
The verification of accuracy of findings was fulfilled through keeping a reflective journal during the exegetic process to delineate the interaction with the hermeneutic circle for transparency of engagement with the data (Cohen, Kahn and Steeves 2000). The following excerpts from the
researcher’s reflexive journal exemplify reflections at various stages in the hermeneutic process.
‘There is so much data, every day I find more and more aspects of the role. The first to categorise was that of the support that the carers provided. There are so many emotions running through the texts that it’s easy to remember exactly how the participants sounded. It’s a strange experience but the more I read and reread these transcripts the more the process is starting to make sense.’ – Initial dwelling with transcripts.
‘I’ve had to take out the minor theme of physical pain from the categories as not enough evidence supports this. Also, for the positive aspects I feel that I may have more than three. I have two regarding the care and strength of the CR [care receiver]
but personal growth seems to be outgrowing itself. I feel that finding meaning and recognising change in oneself are distinct.
53 The former is seeing what is good and appreciating it and
personal change is the adaption to the role, almost like a learning experience. This seems to fit with the transcripts too when I re-read them, especially the areas in which the carers talk about the positives, even if they were reluctant to recognise any when first asked.’ – Development of categories, in
particular the perceived positive aspects of the role.
The process was followed and affirmed by a secondary researcher
experienced in the use of Gadamerian phenomenology and hermeneutics (Gadamer 1998) who had access to the participant transcripts, the
conceptual model created of the entire process and the individual
interpretations. Such secondary confirmation of findings is necessary to add legitimacy to the use of hermeneutics to ensure that the researcher has not misinterpreted data or imposed their own opinions or thoughts in to the findings, consciously or otherwise (Finlay 2011).
A Summary of the Qualitative Analysis Process in Stage One is provided below:
1) Semi-structured interviews with participants recorded.
2) Reflexive journal written on and after interviews to capture thoughts and feelings regarding informal carers experiences listened to.
3) Listening to recordings and transcribing interviews.
4) Dwelling with the data to initiate fusion of horizons.
5) Collating of major themes using NVivo 9.
6) Re-reading transcripts to ensure fit of major themes.
7) Grouping quotes from transcripts in to major themes to form minor themes.
8) Using reflexive journal to document these decisions and processes.
9) Ensuring major themes and transcripts are congruent (hermeneutic circle).
10) External validation of process with secondary affirmation.
3.11 Stage Three Design of Research Study
Stage Three involved the quantitative assessment of the intervention pilot based upon the difference in the health and wellbeing outcomes between the intervention and control group.
54 3.12.1 Stage Three Aim
The aim of Stage Three was to pilot the developed intervention gauging feasibility, acceptableness, meaningfulness, and effectiveness to enhance the understanding of how best to assist those caring for relatives with BD through self-care. This aim led to the research question below.
3.12.2 Stage Three Research Question
Which methods of self-care are evaluated and reported to enhance the health and wellbeing of caregivers of a person with bipolar disorder?
Exploration of the four components separately rather than as a whole allows understanding of the effects of each component rather than a uniform score which could resort in both false positive or false negative effects (Gillan, Dodd and Williamson 2002).
3.13 Stage Three Ethical Considerations
Ethical approval was sought from the relevant research ethics committee of the School Ethics Research Panel for the Nursing Department at Robert Gordon University prior to starting the study, including negotiation of access to relevant care support groups and organisations. Participants provided informed consent prior to taking part in the study. All those involved were informed that their participation was voluntary, that they could withdraw at any time without reason, that all information would be kept confidential and that the intervention was not in place of existing or future assistance from healthcare professionals.
Participants were provided with the contact information: postage address, telephone number, and e-mail address, of the study primary researcher and prompted to contact at any time with any questions or queries. All data collected was analysed, anonymised, reported and held securely in accordance with the Data Protection Act (1998) and Robert Gordon University Research Ethics Governance.
55 3.14 Stage Three Procedure
3.14.1 Gaining Access/ Recruitment
Initially, forty nine carer centres were contacted across the UK: sixteen in Scotland, twenty seven in England, four in Wales and two in Northern Ireland. Carer centres were listed by the Prince’s Carers Trust and of those groups who had contact information, an e-mail was sent outlining the study and asking that anyone they knew fitting the criteria of caring for a relative with BD could be made aware of the opportunity to
participate. Furthermore, the study was advertised on the Robert Gordon University home page with information about the study and contact details of how to enquire about taking part. This release was later advertised on caregiver websites and in several newspapers in the Aberdeenshire area with varying levels of detail regarding the study depending on article length and how to take part.
Participants were not recruited through the NHS as this would have relied heavily upon relatives as a mediating factor on whether they wished for their relative to know about the study or not. Inclusion of such a subset should be considered for larger scale attempts (Leon, Davis and Kramer 2011), but for the purposes of the pilot study reported in this thesis, caregivers were themselves given the choice when the study was freely advertised. However, it should be considered that gatekeepers at carer centres may have influenced who was aware of the study selectively, even though they were advised not to do so in communications with them.
Participants contacted the primary investigator through their preferred means and were given an information sheet and consent form that outlined the study and what would be expected of them (Appendices 9
Participants contacted the primary investigator through their preferred means and were given an information sheet and consent form that outlined the study and what would be expected of them (Appendices 9