Families navigating health and social care systems in the context of childhood dementia: the role of allied health.
Leigh Donovan1, Gail Hilton11Childhood Dementia Initiative, Sydney, New South Wales, Australia
Abstract
Background
Children diagnosed with a form of dementia require increasing levels of care and support as their condition regresses over time. Most children die before reaching the age of 18.
Aim
Childhood Dementia Initiative (CDI) partnered with Nous Group to conduct research to articulate and represent the ‘lived experience’ of families in their interactions with care and support services.
Methods
A convenience sample of parents subscribed to the CDI Family Advocate database. Semi-structured interviews were recorded and transcribed with the consent of participants. Key themes were identified using thematic analysis.
Results
Eight parents consented to participate. Six themes emerged: 1. Conditions that cause childhood dementia are rare and difficult to diagnose which results in delayed diagnosis, 2. There is no defined care pathway and parents find it difficult to navigate care and support to meet their child’s needs, 3. Parents become administrators and project managers for their child’s care, 4. Paediatric palliative care can fill a navigation and coordination gap but is not consistently accessed, 5. NDIS packages are essential support for families, but are challenging to access and manage, 6. Following the death of their child families find comfort in informal and formal supports, yet these can be difficult to access and sustain.
Conclusions
Given the rarity of childhood dementia, experience in working alongside families may see allied health practitioners feel unprepared in this role. This report provides guidance directly from the lived experience as to how allied health professionals can work most effectively in collaboration with children and family’s living with dementia.
Biography
Dr Leigh Donovan has over 20 years experience working in clinical, program management and research positions in the tertiary health, not-for-profit and higher education sectors. Leigh specialises in paediatric palliative and bereavement care and currently holds the role of Manager: Stakeholder Engagement with Childhood Dementia Initiative. In 2016 Leigh completed her PhD: Exploring the experience and needs of parents whose child has died from cancer and in 2017 was awarded a Churchill Fellowship to inform guidelines for bereavement care in tertiary children’s hospitals in Australia.