Talleres de oficio

My position in this study consists of more than the philosophical stance and methodological strategies: it also consists of my own life experiences values as both an „insider‟ parent of a child who has survived cancer and an „outsider‟ social researcher. This duality has informed my approach and shaped both the quality of data collected and the mode of analysis (Ryan and Golden 2006: 1192). My reflexive position means being honest and aware of myself as having an explicit role in this research (Kondrat 1999: 452; Willis 2006: 260). Both the participants and I are active agents who interpret, interact and respond to our everyday lives. As an insider I have shared with participants the experience of having our respective child‟s life threatened by cancer and the ongoing processes of being a carer of a child in remission.

My insider/outsider status means that the relationship between self and participants is one of shared childhood cancer experiences, which reduces the distance of difference and enhances the understandings between researcher and researched (Kondrat 1999: 456-457). In this study, I believe the distance between

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researcher and researched is reduced by our shared childhood cancer experiences. I am therefore a „connected knower‟ in using my personal experience „as a

strategy for understanding‟ participants‟ experiences and knowledge (Gilgun 2008: 184). While the distance between me and the participants may be reduced, we each interpret our own situation as a unique, distinctive experience and the „knowing‟ part of this connection is not absolute. Our shared experience establishes a degree of sameness but there remains a fundamental hermeneutic space between primary carers‟ self-interpretations and my attempts to interpret their sense-making processes from my own insider/outsider paradigm and cultural context (Rice and Ezzy 1999: 26). Furthermore, I experienced my son‟s cancer diagnosis more than 20 years ago. The metaphor „time heals‟ has a certain truth as my current self is partially informed but certainly not determined by his cancer. My „insider‟ status is only a fractional part of my identity, yet my childhood cancer experience is a motivating factor in conducting this research.

I consider my insider/outsider position to have contributed positively in this research. Having some knowledge of the phenomenon being investigated forms an important part of qualitative research (Rice and Ezzy 1999). The participants and I have similar experiences of having a child with cancer: the shock of diagnosis, a heightened awareness of the fragility of life, forcing our child to endure painful medical procedures, dealing with ongoing cancer uncertainties and dealing with ongoing child morbidities. My insider position aligns with the insights of Charmaz (2000: 525):

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To seek respondents‟ meanings, we must go further than surface

meanings. We must look for views and values as well as acts and facts. We need to look for beliefs and ideologies as well as situations and structures. By studying tacit meanings, we clarify, rather than challenge respondents‟ views about reality.

I sought to maintain the sound qualitative research practices which Charmaz (2000) promotes. My cancer related experiences advantaged my capacity to probe sensitive themes and tacit meanings with a degree of familiarity and confidence such as the shock of diagnosis, entering the unfamiliar world of paediatric oncology, the relief of remission and the shared grief of others whose child died or cancer. I retain a degree of technical familiarity with different cancer typologies, chemotherapy drugs, medical procedures involving catheters and infusaports (for administering chemotherapy), spinal taps, hospital routines and pathology results. So when participants discussed their experiences,

meanings and technical knowledge acquired through cancer I had an established understanding by drawing on my own somewhat distant but familiar experiences. For example, when a participant discussed how her child‟s „catheter that broke while playing‟ I understood the implied urgency in getting immediate medical attention to avoid the child bleeding to death. When carers spoke of chicken-pox or measles in a matter-of-fact manner when a child is immune-suppressed, I knew the gravity of their situation as potentially life-threatening and their sense of responsibility in imposing a home and school quarantine to circumvent a potential viral infection. I was also familiar with the acute anxieties involved in a child‟s diagnosis, the angst of forcing the child to submit to painful treatments and the everyday uncertainties in the aftermath of cancer.

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More relevant perhaps, I have interacted with many other primary carers for several years preceding this research and have acquired an intimate understanding of this population‟s nuanced and tacit meanings and types of expressions. With this „insider‟ knowledge I gained valuable data that may have otherwise been missed or discounted as unimportant. I gained an intimate rapport with the participants, often with little effort on my part, as we discussed our experiences through and beyond our children‟s cancer in an open dialogue (Charmaz 1990). The participants were aware of my own family cancer experience through information sent to them before the interview. They often asked about my experiences through cancer and remission, and my son‟s health. As such, the interviewer and interviewee positions were at times reversed. At other times I used my experiences to strategically draw out participants‟ responses to particular enquiries. For example, I discussed how my son‟s short-term memory impacted on his school life as a leading enquiry into how participants give meaning of their child‟s learning difficulties and their strategies in dealing with their child‟s health and education. Interview interactions developed as a flowing dialogue and provided immensely rich and detailed data.

An important issue arose during the interviews when at least half the participants stated they had limited prior opportunity to discuss their own experiences through and beyond their child‟s cancer. The interviews provided a forum for carers to speak of their lived experiences with a similar other. On several occasions they

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discussed the personal value for them „just to be able to talk about it‟, so an „interview-as-therapy‟ theme emerged through my data collection and reflexive memos to illustrate participants‟ need to give meaning to their experiences through interaction (Rice and Ezzy 1999; Becker 1997; Stacey 1997). By listening intently I was privileged to hear their accounts of constructing meaning in their everyday lives. In writing this thesis I remain convinced that being an insider/outsider researcher enhanced interview interactions by providing a productive forum for participants to articulate their lived experiences.

As an „outsider‟ researcher in this sensitive study I share an empathy with the participants. I also refute the idea of being a detached researcher, due to the affinity and rapport that mutually developed through the interviews. I am incapable of bracketing my bona fide self from present or past experience (Charmaz 1990). Instead, I incorporated rather than segregated my insider and outsider selves in a research position between these dichotomous positions. I was also able to keep a certain degree of distance by engaging analytically and

systematically through the research process. This distance was not difficult to maintain as the emotional rawness of experiencing my child‟s illness is much diminished. However, conducting this research has forced me to revisit and reflect my own experiences of cancer. In keeping a degree of critical distance I strategically kept my own experiences at a personal level (which I shared with participants), but predominantly focused on analysing their accounts. In this way I established an informal and fluid boundary: of sharing and comparing my

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insider insights with the participants, but also comparing each of their

experiences and childhood cancer literature. Combining rather than segregating my positions allowed me a space „between‟ to compare and analyse participants accounts as I was neither „inside‟ nor „outside‟ the data collection/analysis process. From this reflexive position I focused centrally on primary carers‟ realities of everyday life both through and after the abatement of their child‟s cancer to capture their biographical context of experiences.

While I consider my insider/outsider position an advantage I concede being in a position of power as a professional social science researcher endorsed by the University of Tasmania, the Human Research Ethics Committee Tasmania Network and Camp Quality, a national cancer support agency. In this context I was concerned with being perceived by participants as an „expert‟ researcher with some insider understandings. This issue did not explicitly emerge through the interview interactions but I was sensitive to the need to conduct the interviews by maintaining a „socially acceptable incompetent‟ approach by keeping an open dialogue but giving precedence to the participants as lay experts of their own lived-experiences (Atkinson and Pugsley 2005: 230; Hillier and DiLuzio 2004). My position of power also means I carried a moral responsibility towards the participants, as they entrusted me with very intimate details of their lives.

The research process to some extent impacted on my own well-being, as I found some of the interviews confronting. Participants described in great detail their

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insidious memories: their child‟s distorted body, the painful and invasive treatment procedures, their sense of helplessness, the ongoing effects of cancer treatment, the death of other children and the grief shared with other families. I protected my own well-being through the emotionally draining aspects of the research process by debriefing with my academic supervisors and colleagues. I also drew particular strength from participants whose responses illustrated their resilience and adaptability through and beyond their child‟s cancer.