Abstract
Background: There is a gap in understanding the experiences of families living with complex parental illness such as younger onset dementia (YOD). We aimed to develop a socially informed theoretical framework, focusing on the actions to foster enablement of the whole family to function well, whilst facing many social challenges.
Methods: Thirty-five data capture events were gained through semi structured interviews with children and young people (17), people living with YOD (5), spouse/caregivers (6) and health and social care providers (7). A thematic analysis was conducted using an innovative theoretical lens drawn from the combined perspectives of the social model of disability and family systems-illness model.
Results: Two major themes emerged from the data. The first theme: Understanding the social demands on the family - described lifecycle challenges and pressures on families living with YOD, within a social context. The second theme: Interactions of health and social care providers with families living with younger onset dementia - depicted opportunities and barriers experienced in service provision including advocating for change in the health and social care system.
Conclusion: Enabling participation and engagement in the community, and appropriately investing in maintaining the emotional and physical well-being of the whole family to live and function well with a parental illness such as YOD, is crucial. The innovative model offers a socially focused theoretical paradigm for collaborative rethinking and fostering design and development of family-focused services and support. Further advancement and integration of this theoretically underpinned co-created, family-focused service model requires additional research but could be translated to families with other parental illness.
Methods: Thirty-five data capture events were gained through semi structured interviews with children and young people (17), people living with YOD (5), spouse/caregivers (6) and health and social care providers (7). A thematic analysis was conducted using an innovative theoretical lens drawn from the combined perspectives of the social model of disability and family systems-illness model.
Results: Two major themes emerged from the data. The first theme: Understanding the social demands on the family - described lifecycle challenges and pressures on families living with YOD, within a social context. The second theme: Interactions of health and social care providers with families living with younger onset dementia - depicted opportunities and barriers experienced in service provision including advocating for change in the health and social care system.
Conclusion: Enabling participation and engagement in the community, and appropriately investing in maintaining the emotional and physical well-being of the whole family to live and function well with a parental illness such as YOD, is crucial. The innovative model offers a socially focused theoretical paradigm for collaborative rethinking and fostering design and development of family-focused services and support. Further advancement and integration of this theoretically underpinned co-created, family-focused service model requires additional research but could be translated to families with other parental illness.
| Original language | English |
|---|---|
| Publication status | Published - 2 Dec 2019 |
| Event | Researching with Carers Workshop - University of Technology Sydney, Sydney, Australia Duration: 2 Dec 2019 → 2 Dec 2019 |
Workshop
| Workshop | Researching with Carers Workshop |
|---|---|
| Country/Territory | Australia |
| City | Sydney |
| Period | 2/12/19 → 2/12/19 |