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Saturday, May 9, 2009
Northwest Hall (Chicago Hilton)
12:00 PM
Background: Autism is a developmental disorder that affects children’s personal, familial, scholastic, and community experiences and relationships. Intensive ongoing home-based treatment is needed by many children with autism. Research identifies mothers as these children’s primary caregiver, and as central in accessing, navigating and, in many cases, providing needed resources and treatments. Despite mothers’ integral role, there is a dearth of research addressing these roles, and the experiences and needs of mothers and their families over the extended course of this caregiving journey. Understanding this shifting nature of care, including maternal and family needs, is crucial in ascertaining challenges, gaps and areas for intervention.
Objectives: The purpose of this study is to evaluate this shifting nature of maternal and family care of children with autism over the course of child and adolescent development. The study will ultimately serve to identify needs for home- and community-based care.
Methods: This study draws upon a mixed-method qualitative design. Data collection comprises three phases: (1) semi-structured interviews with caregiving mothers at varying points in their child’s development (diagnosis, pre-school, elementary school, junior high, high school, transition to adulthood), (2) participant observation in the homes of families at diverse developmental ages/stages (including follow-up family interviews), and (3) a Delphi consultation identifying guiding statements and recommendations for practice and policy advancement.
Results: Findings from Phase 1 qualitative interviews will be presented. Findings will address the roles, experiences, strengths and challenges of mothers and families who are caring for a child with autism. Greater knowledge about these important realities will ultimately lead to increased awareness of maternal needs, with the potential for increased targeting of services to meet needs. By identifying the needs of caregiving mothers over time, the quality of life and sustainability of these mothers and their families, have the potential to be supported. Given the demanding and shifting challenges of autism-based maternal care, upholding and supporting mothers, as key caregivers, is of paramount importance.
Conclusions: Current gaps in understanding maternal experiences over time, will be redressed by illuminating the temporal shifts of maternal care for children with autism. Based on emergent findings, future priorities for further family-based autism research, including potential intervention studies, are expected.
Objectives: The purpose of this study is to evaluate this shifting nature of maternal and family care of children with autism over the course of child and adolescent development. The study will ultimately serve to identify needs for home- and community-based care.
Methods: This study draws upon a mixed-method qualitative design. Data collection comprises three phases: (1) semi-structured interviews with caregiving mothers at varying points in their child’s development (diagnosis, pre-school, elementary school, junior high, high school, transition to adulthood), (2) participant observation in the homes of families at diverse developmental ages/stages (including follow-up family interviews), and (3) a Delphi consultation identifying guiding statements and recommendations for practice and policy advancement.
Results: Findings from Phase 1 qualitative interviews will be presented. Findings will address the roles, experiences, strengths and challenges of mothers and families who are caring for a child with autism. Greater knowledge about these important realities will ultimately lead to increased awareness of maternal needs, with the potential for increased targeting of services to meet needs. By identifying the needs of caregiving mothers over time, the quality of life and sustainability of these mothers and their families, have the potential to be supported. Given the demanding and shifting challenges of autism-based maternal care, upholding and supporting mothers, as key caregivers, is of paramount importance.
Conclusions: Current gaps in understanding maternal experiences over time, will be redressed by illuminating the temporal shifts of maternal care for children with autism. Based on emergent findings, future priorities for further family-based autism research, including potential intervention studies, are expected.