Child: care, health and development · 2025
Family Life and the Integration of Care of a Child With Neurodevelopmental Disability: Parental Experiences and Predictive Factors of Family Functioning, Adjustment and Understanding Disability.
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Hickey L, Shepherd D A, Bornemisza A, Sutherland I, Lucia A, Yates M, Nguyen H T D, Baikie G
Аннотация
BACKGROUND: Research has explored family life with neurodevelopmental disabilities (NDDs); however, many studies have focused on specific diagnoses or conditions. This study sought to broaden our understanding of parents' experiences of caring for children with NDDs and explore factors that may predict successfully integrating the child's care into family life.
METHODS: Cross-sectional study design. Parents of children attending a neurodevelopment and disability clinic completed surveys focused on their family's functioning (Family Assessment Device-General Functioning; FAD-GF), understanding of their child's disability (Parent Experience of Childhood Illness/Condition; PECI) and family adjustment to caring for their child (Family Management Measure; FAMM). Family demographics and child characteristics were also collected. Survey responses were described and summarised across the whole sample and stratified by potential predictors.
RESULTS: Parents (n = 123) reported similar experiences across the sample on all three measures. This finding may be indicative of ongoing and persistent challenges for families as they integrate the care of their child into family life, regardless of the type of disability/condition, age at diagnosis and time elapsed since diagnosis. For families in this sample, many children had more than one comorbidity to their primary diagnosis/condition, and the complex nature of learning about their child's condition/s unfolds over time.
CONCLUSION: This study advances our understanding of family life with disability by examining key factors shaping the experience of caring for children with complex needs across various neurodevelopmental disorders. Our findings provide a broader perspective than previous condition-specific research, highlighting the multifaceted nature of family experiences in disability care. This comprehensive view can inform more effective support strategies for families throughout their child's developmental journey, emphasising the importance of considering family functioning, adjustment and management beyond individual diagnoses.
METHODS: Cross-sectional study design. Parents of children attending a neurodevelopment and disability clinic completed surveys focused on their family's functioning (Family Assessment Device-General Functioning; FAD-GF), understanding of their child's disability (Parent Experience of Childhood Illness/Condition; PECI) and family adjustment to caring for their child (Family Management Measure; FAMM). Family demographics and child characteristics were also collected. Survey responses were described and summarised across the whole sample and stratified by potential predictors.
RESULTS: Parents (n = 123) reported similar experiences across the sample on all three measures. This finding may be indicative of ongoing and persistent challenges for families as they integrate the care of their child into family life, regardless of the type of disability/condition, age at diagnosis and time elapsed since diagnosis. For families in this sample, many children had more than one comorbidity to their primary diagnosis/condition, and the complex nature of learning about their child's condition/s unfolds over time.
CONCLUSION: This study advances our understanding of family life with disability by examining key factors shaping the experience of caring for children with complex needs across various neurodevelopmental disorders. Our findings provide a broader perspective than previous condition-specific research, highlighting the multifaceted nature of family experiences in disability care. This comprehensive view can inform more effective support strategies for families throughout their child's developmental journey, emphasising the importance of considering family functioning, adjustment and management beyond individual diagnoses.