Marginalisation exists in many locations in society and has many faces. Perhaps because of government policy in recent times emphasising the centrality of family, we might be forgiven for thinking that family members are not among society’s marginalised. This thesis challenges such assumptions through an exploration of individual experiences where a rare cancer has visited the family.
The central themes in this thesis have changed over time and have occasionally surprised and challenged my own assumptions about the centrality of family within the medical sphere. As the research has centred on a drive to understand better the possible experiences of rare cancers from social and emotional perspectives, participants have been at the very core of the process. Situated within a hermeneutical phenomenological methodological framework that seeks to articulate lived experience, searched for new knowledge, greater sensitivity and increased awareness of the issues facing family members at such times. This research stems from my own family experience with a rare cancer which has challenged my taken-for-granted assumptions about life, family and the medical system. Despite my own experiences, there were many surprises awaiting me in the participants’ eagerness to tell of their own experiences.
Theoretically and methodologically the work is located within a critical phenomenology, utilising an in-depth search for meaning of the phenomenon with adult family members. The research acknowledges and emphasises subjectivity and an essentially situated researcher as an active participant in the making of meaning within the research endeavour.
The findings suggest a range of contradictions and experiences where families are seen as both resource and co-carer for their loved one with the rare cancer, and yet are not seen as individuals in their own right.
Characteristics of rareness potentially contribute to unexpected feelings of marginalisation from the medical process on the part of family members. Importantly, assumptions about the embedded nature of family in the medical process seem irrelevant where issues associated with rareness complicate the process for family members. Assumptions about the presence of social work and allied health for families at such times can be set aside as family members’ positions within the medical system seem at best marginal and at worst exploited. Family members, while already facing the trauma of a rare and at times unknowable disease in a loved one, can be further affected by a perceived lack of legitimacy as thinking, feeling individuals who themselves may be traumatised. In many ways, family members face not just parallel, but multiple traumas, as they may be silenced and retreat into invisibility as people in need themselves.