‘Fighting every day’: exploring caregiver quality of life and perspectives on healthcare services for children with dementia – a cross-sectional, mixed-methods study

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dc.contributor.authorDjafar, J.
dc.contributor.authorNevin, S.
dc.contributor.authorSmith, N.
dc.contributor.authorArdern-Holmes, S.
dc.contributor.authorBhattacharya, K.
dc.contributor.authorDale, R.
dc.contributor.authorEllaway, C.
dc.contributor.authorGrattan, S.
dc.contributor.authorJohnson, A.
dc.contributor.authorKandula, T.
dc.contributor.authorKariyawasam, D.S.
dc.contributor.authorLewis, K.
dc.contributor.authorMeagher, C.E.
dc.contributor.authorMohammad, S.
dc.contributor.authorFarrar, M.A.
dc.date.issued2025
dc.description.abstractObjective To explore quality of life outcomes for caregivers of children with childhood dementia including the positive and negative impact of caregiving. The secondary aim was to explore caregivers’ perspectives on healthcare services for children with dementia. Design Cross-sectional, mixed-methods study with analyses of quantitative and qualitative data collected via online survey. Setting Australian tertiary referral children’s hospitals, clinics and community advocacy groups. Patients 40 caregivers of children with dementia. Interventions The survey was developed by a multidisciplinary team of clinicians including paediatric neurologists and behavioural scientists with experience in caring for families with childhood dementias and mixed-methods research. Main outcome measures Surveys assessed caregiver-reported health-related quality of life, psychological distress, the impacts of caregiving and perspectives on healthcare services and how they may be improved for children with dementia. Results Psychological distress was reported by 72.5%, caregiver stress by 67%, chronic pain or discomfort by 43% and for 87.5% their child’s condition had a moderate or severe impact on their ability to do regular daily activities. Caregivers voiced a desire for more integrated care, increased general awareness and education around childhood dementia and a greater need for more trained support services. Conclusions Caregivers of children with dementia experience high levels of psychological distress, physical and social consequences. This study highlights the need for integrated care and psychosocial support to efficiently connect children and families with appropriate healthcare services and resources.
dc.description.statementofresponsibilityJason Djafar, Suzanne Nevin, Nicholas Smith, Simone Ardern-Holmes, Kaustuv Bhattacharya, Russell Dale, Carolyn Ellaway, Sarah Grattan, Alexandra Johnson, Tejaswi Kandula, Didu S Kariyawasam, Katherine Lewis, Christian Elias Meagher, Shekeeb Mohammad, Michelle Anne Farrar
dc.identifier.citationArchives of Disease in Childhood, 2025; 110(7):566-572
dc.identifier.doi10.1136/archdischild-2024-328011
dc.identifier.issn0003-9888
dc.identifier.issn1468-2044
dc.identifier.orcidSmith, N. [0000-0003-2409-9239]
dc.identifier.urihttps://hdl.handle.net/2440/147761
dc.language.isoen
dc.publisherBMJ Publishing Group
dc.relation.granthttp://purl.org/au-research/grants/nhmrc/1194940
dc.rights© Author(s) (or their employer(s)) 2025. No commercial re- use. See rights and permissions. Published by BMJ Group.
dc.source.urihttps://doi.org/10.1136/archdischild-2024-328011
dc.subjectcaregivers; childhood dementia; quality of life; healthcare services
dc.subject.meshDementia
dc.subject.meshCross-Sectional Studies
dc.subject.meshStress, Psychological
dc.subject.meshQuality of Life
dc.subject.meshCaregivers
dc.title‘Fighting every day’: exploring caregiver quality of life and perspectives on healthcare services for children with dementia – a cross-sectional, mixed-methods study
dc.typeJournal article
pubs.publication-statusPublished online

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