Barling, JA 2011, 'From go to woe: family member’s stories of adolescents and young people living with and dying from cancer', PhD thesis, Southern Cross University, Lismore, NSW.
Copyright JA Barling 2011
The purpose of this thesis is to uncover, through families telling their stories, the experience of family members following the diagnosis, treatment, dying and death of an adolescent or young adult (AYA) family member. The decision to undertake this research was related to the lack of treatment, support and research for AYAs with cancer (CanTeen, 2005; Ewing, 2005), life stage issues for adolescents and their families (Grinyer, 2002a, 2007a, 2007b, 2008, 2009), and the researcher’s own position as a mother whose adolescent son had died of cancer.
Given the sensitive nature of the research study and the researcher’s own position, the most appropriate methodology to understand this experience was considered to be narrative inquiry. Narrative inquiry uses open-ended questions and allows the person to tell their story in their own time. The methodology also accommodates the researcher’s own experience, due to a common understanding of the experience for both the researcher and the family members, providing the opportunity for rich descriptions of the experience.
Twenty-six people self selected through the media to tell their story, of a family member aged 12-21 who had lived and died of cancer over twelve months previously. The analysis and interpretation involved the development of core stories, which configured and emplotted the family members’ experience from the transcripts. Following this, themes were identified through Taylor’s (2006) computer-assisted thematic analysis that were further organised and coded using the NVivo8 computer software to identify commonalities and differences within the themes. These themes were coded within four stages of the cancer journey - Departure, Exploration, Anticipation and Destination (Armstrong-Coster, 2004).
The following themes were identified in the Departure stage: something not quite right; confirming what’s wrong; being confronted with the diagnosis; and; response to diagnoses. Being informed about treatment; the reality of hospitalisation; watching the inevitability of treatment; staying connected and supportive; recalling what helped; and; living the quest were themes within the Exploration stage. The Anticipation stage included only one theme; sensing a reprieve. Finally, the Destination stage uncovered the themes of; ending the reprieve; the pronouncement of impending death; changing the focus of care; going downhill; keeping a vigil; experiencing lack of care; feeling overwhelmed; witnessing heroism; maintaining hope; saying goodbye; recalling the moment and extending the living connection. An overarching theme for the stories in this study was isolation for the AYAs and their families. This study further identified issues specific to AYAs and their families and contributes to developing knowledge for this under-researched group of people.