Mrs Diane Cass1
1Charles Sturt University, Wagga Wagga, Australia
Biography:
I started my working career in England as a lawyer. Migrating to Australia in 2002 I studied social work and mental health before teaching at multiple universities. In 2019 my loved ones and I were diagnosed with a degenerative and incurable illness. Finding that there was virtually no support for families in this situation, I started my doctorate in 2020. My overarching goal is to learn more about the experiences of these families so that appropriate resources can be provided at the point of diagnosis and beyond, in addition to training for allied health professionals to support individual family members.
Abstract:
The purpose of this study was to establish the experiences of individuals within families where there are two or more members with a chronic condition.
There are a multitude of resources and supports for individuals facing a chronic condition. However, there is a paucity of research exploring multiple individuals within families who have a chronic condition. A literature review found no studies specifically exploring the unique identity of individuals being both carer and patient.
This research has explored the experiences of individuals within families where there are two or more members with a chronic condition to establish their unique needs. This was undertaken using a qualitative hermeneutic phenomenological study. Data were collected using semi-structured interviews with 12 participants after consent was gained. Participant criteria was adults in a family where two or more members had a chronic condition.
Findings from the data highlighted the importance of participants having a self-care plan. In addition, participants identified their capacity to self-advocate. There were multiple instances of medical gaslighting, which participants were able to advocate for themselves despite these barriers. Routine was another finding that resulted in more positive outcomes for participants. Although, given that many individuals have good and bad days, flexibility of routine was also indicated as being highly important.
The implications of this research will enable a more precise approach for individual resources and supports provided to relevant families. Specific resources can be developed from a sound epistemological foundation, ensuring best practice and relevance for those individuals who are impacted.