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Saturday, May 17, 2008
Champagne Terrace/Bordeaux (Novotel London West)
11:30 AM
Background: The needs and clinical manifestations of autism shift substantially over the course of childhood, adolescence, and young adulthood. In caring for their child with autism, mothers often play key and diverse caregiving roles.
Objectives: In addressing the experiences of mothers in providing this care and in understanding the provision and impact of family care over time, this preliminary qualitative review examined the experiences of mothers of children with autism, as well as family-based impacts of care over time.
Methods: As part of a larger study, focus groups were conducted with (1) parents of children with autism and (2) autism service providers. In total, 2 focus groups with parents were conducted, and 1 focus group with service providers in autism care. Focus groups identified issues and challenges faced by families in which a child has autism.
Results: The three focus groups comprised a total of 13 participants: 9 mothers of a child with autism and four service providers. One family had 2 children with autism. Findings included a range of experiences and challenges, over time, that face families in which a child has autism. Emergent themes demonstrated: (1) extraordinary maternal involvement in care, (2) negative impacts of autism on family functioning; (3) emotional strain experienced by family members, (4) impediments to obtaining resources, and (5) continual shifts in autism-based experiences and needs over time.
Conclusions: Given the shifting nature of autism in the life of the developing child as well as mothers’ key role in caregiving, greater knowledge about maternal and family experiences and shifts are integral in potentially improving developmentally-based needs assessment, treatment planning, support strategies, and resource allocation. The study has important implications for understanding and ultimately enhancing maternal and family experience, which has a direct link to the care and outcomes of children with autism.
Objectives: In addressing the experiences of mothers in providing this care and in understanding the provision and impact of family care over time, this preliminary qualitative review examined the experiences of mothers of children with autism, as well as family-based impacts of care over time.
Methods: As part of a larger study, focus groups were conducted with (1) parents of children with autism and (2) autism service providers. In total, 2 focus groups with parents were conducted, and 1 focus group with service providers in autism care. Focus groups identified issues and challenges faced by families in which a child has autism.
Results: The three focus groups comprised a total of 13 participants: 9 mothers of a child with autism and four service providers. One family had 2 children with autism. Findings included a range of experiences and challenges, over time, that face families in which a child has autism. Emergent themes demonstrated: (1) extraordinary maternal involvement in care, (2) negative impacts of autism on family functioning; (3) emotional strain experienced by family members, (4) impediments to obtaining resources, and (5) continual shifts in autism-based experiences and needs over time.
Conclusions: Given the shifting nature of autism in the life of the developing child as well as mothers’ key role in caregiving, greater knowledge about maternal and family experiences and shifts are integral in potentially improving developmentally-based needs assessment, treatment planning, support strategies, and resource allocation. The study has important implications for understanding and ultimately enhancing maternal and family experience, which has a direct link to the care and outcomes of children with autism.