TY - JOUR
AU - J. Djafar
AU - S. Nevin
AU - N. Smith
AU - S. Ardern-Holmes
AU - K. Bhattacharya
AU - R. Dale
AU - C. Ellaway
AU - S. Grattan
AU - A. Johnson
AU - T. Kandula
AU - D. S. Kariyawasam
AU - K. Lewis
AU - C. E. Meagher
AU - S. Mohammad
AU - M. A. Farrar
A1 - 
AB - OBJECTIVE: 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.
AD - Discipline of Paediatric and Child Health, School of Clinical Medicine, UNSW Medicine and Health, University of New South Wales, Sydney, New South Wales, Australia.; Department of Neurology, Sydney Children's Hospital Network, Sydney, New South Wales, Australia.; Department of Neurology and Clinical Neurophysiology, Women's and Children's Health Network, North Adelaide, South Australia, Australia.; Discipline of Paediatrics, School of Medicine, The University of Adelaide, Adelaide, South Australia, Australia.; Department of Neurology, Children's Hospital at Westmead, Westmead, New South Wales, Australia.; Genetic Metabolic Disorders Service, The Sydney Children's Hospitals Network, Westmead and Randwick, New South Wales, Australia.; Clinical School, The Children's Hospital at Westmead, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia.; Discipline of Paediatric and Child Health, School of Clinical Medicine, UNSW Medicine and Health, University of New South Wales, Sydney, New South Wales, Australia m.farrar@unsw.edu.au.
AN - 39832815
BT - Arch Dis Child
C5 - Healthcare Disparities
CP - 7
DA - Jun 19
DO - 10.1136/archdischild-2024-328011
DP - NLM
ET - 20250619
IS - 7
JF - Arch Dis Child
LA - eng
N2 - OBJECTIVE: 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.
PY - 2025
SN - 0003-9888
SP - 566
EP - 572+
ST - 'Fighting every day': exploring caregiver quality of life and perspectives on healthcare services for children with dementia - a cross-sectional, mixed-methods study
T1 - 'Fighting every day': exploring caregiver quality of life and perspectives on healthcare services for children with dementia - a cross-sectional, mixed-methods study
T2 - Arch Dis Child
TI - 'Fighting every day': exploring caregiver quality of life and perspectives on healthcare services for children with dementia - a cross-sectional, mixed-methods study
U1 - Healthcare Disparities
U3 - 10.1136/archdischild-2024-328011
VL - 110
VO - 0003-9888
Y1 - 2025
ER -