Karen Hutchinson1, Chris Roberts2, Michele Daly2, Caroline Bulsara3, Susan Kurrle1. 1. NHMRC Cognitive Decline Partnership Centre,Old Leighton Lodge (Building 8),Hornsby Ku-ring-gai Hospital,Hornsby NSW 2077,Australia. 2. Northern Clinical School-Hornsby,Building 3,Hornsby Ku-ring-gai Hospital,Hornsby NSW 2077,Australia. 3. The University of Notre Dame Australia,19 Mouat Street (PO Box 1225),Fremantle,Western Australia 6959,Australia.
Abstract
BACKGROUND: Socially constructed disablement has marginalized young people in families where a parent has younger onset dementia (YOD). This has contributed to inadequate societal support for their complex situation. Impacts on such young people include significant involvement with mental health services for themselves. In this paper, we explored the young people's lived experiences in these families and the influencing factors to enable these young people to be included and supported within their community. METHODS: In this qualitative research study, the social model of disability was used as the theoretical framework in conducting a thematic analysis of interviews with 12 participants. RESULTS: Three themes emerged; invisibility highlighting the issues of marginalization; connectivity foregrounding the engagement of young people with family, friends and their social networks, and being empowered through claiming their basic human right to receive the age appropriate support they needed. CONCLUSION: The current plight of young people living with a parent with YOD demands a fundamental shift by society in developing inclusive cross-sectorial cooperation linking service providers across youth and dementia sectors. This requires working in partnership with the service users responding to the identified needs of individual family members.
BACKGROUND: Socially constructed disablement has marginalized young people in families where a parent has younger onset dementia (YOD). This has contributed to inadequate societal support for their complex situation. Impacts on such young people include significant involvement with mental health services for themselves. In this paper, we explored the young people's lived experiences in these families and the influencing factors to enable these young people to be included and supported within their community. METHODS: In this qualitative research study, the social model of disability was used as the theoretical framework in conducting a thematic analysis of interviews with 12 participants. RESULTS: Three themes emerged; invisibility highlighting the issues of marginalization; connectivity foregrounding the engagement of young people with family, friends and their social networks, and being empowered through claiming their basic human right to receive the age appropriate support they needed. CONCLUSION: The current plight of young people living with a parent with YOD demands a fundamental shift by society in developing inclusive cross-sectorial cooperation linking service providers across youth and dementia sectors. This requires working in partnership with the service users responding to the identified needs of individual family members.
Entities:
Keywords:
collaboration; lived experiences; marginalization; parents with younger onset dementia; social model of disability; young people
Authors: Dianne Goeman; Tracy Comans; Joanne C Enticott; Emma Renehan; Elizabeth Beattie; Susan Kurrle; Susan Koch Journal: Front Public Health Date: 2016-10-31