Families Caring for a Child with Disability
摘要
Caring for a child with a neurodisability (ND) profoundly shapes family life, influencing identity, health, employment, and social connectedness. Drawing upon international research, this entry presents the experiences of families caring for a child with ND, recognizing the multifaceted ways in which ND can shape children’s and families’ lives within diverse social and policy contexts. Using The Nest framework from the Australian Research Alliance for Children and Youth (ARACY), this entry explores six interconnected domains of family life: identity and culture (i.e., positive identity through cultural and social inclusion); healthy (i.e., family health and well-being); learning (i.e., accessing information and support); material basics (i.e., managing work and the cost of care); valued, loved, and safe (i.e., family connection and supportive communities); and participating (i.e., agency, advocacy, and decision-making). Many families experience stigma, financial strain, and difficulties accessing healthcare, education, and disability services, which exacerbates stress and health inequities. Parents navigate complex and opaque medical and disability support systems and advocate for their child while managing caregiving responsibilities, significantly impacting employment and economic stability, particularly for mothers. Yet, families report positive transformations: personal growth, stronger social bonds, and advocacy skills. Peer support networks, inclusive education, and well-designed social policies mitigate challenges of caring for a child with ND, improving health and well-being outcomes. To overcome persistent inequities, this entry highlights the urgent need for integrated, family-centered policies that recognize and support the caregiving role while promoting equitable access to healthcare, education, and social services. Amplifying the voices of individuals with disability and their caregivers is essential for working toward more inclusive systems that promote family well-being and social participation. This entry presents both the struggles and strengths of families raising children with ND, contributing to a broader understanding of their lived experiences.