Title: PHENOMENOLOGY of PARENTAL PRIORITIES for SEVERE CHILDHOOD DISABILITY: CONCERNS

Phenomenology of Parental Priorities for Severe Childhood Disability: Concerns, Needs and Expectations of Parents of Children with Severe Non-Ambulant CP

Unni G. Narayanan1,2,,3 MBBS, MSc, FRCS(C); Laurie d’Oliveira1,3 BA, MSW, RSW; David Nicholas1,3 RSW, PhD; Shannon Weir BSc, MSc 1, Beverley Antle1,3 PhD.

1 Child Health Evaluative Sciences Program, Hospital for Sick Children, Toronto

2 Research Institute, Bloorview Kids Rehab, Toronto

3 Department of Social Work, Hospital for Sick Children, Toronto

Introduction:Little is known about the priorities of parents caring for a child with severe disabilities. This study explores parents’ everyday experiences caring for children with severe disabilities to better understand their concerns, needs, desires and expectations with respect to quality of life for their child and family.

Potential Application:Insight into the priorities of parents caring for children with severe disabilities can influence the choice of interventions (programs, policy, medical/therapy treatments, technology and services) that best address these priorities, and also the development of outcome measures that reflect these priorities, to evaluate the effectiveness of these interventions.

Methodology & Results:Qualitative study using phenomenological approach to explore the meaning of living with a child with severe CP from a purposeful sample of 10 families of children (5 to 18 years) with severe CP (GMFCS levels IV & V). Sample drawn from spectrum of socioeconomic status, type & location (rural/suburban/urban) of dwelling, marital status and age/gender of child.Initial direct observation occurred within the home exploring all aspects of the caregiving experience, including caregivers' perceptions of space, time commitments, daily routines, coping strategies, and their concerns, desires and expectations related to their child’s and family’s quality of life. This was followed by semi-structured interviews with caregivers reflecting on their lived experiences. Participants were subsequently provided a camera and invited to take and share photographs that illustrate aspects of the life of the child and family. The photographs were reviewed at a second visit and interview in the home. Findings from transcripts, photographs, field notes, and reflective journals were analyzed by a multidisciplinary team to present emerging themes and guidelines for future research.Caring for a child with severe CP has a profound effect on the lives of parents and the family. The major emerging themes encompassing life with a child with severe disabilities included the child’s health; parental health; parenting and family life; parental attitudes; adaptive/coping strategies; supports and services (people, places, institutions, and government); the environment; and life events. Parents adopt a multitude of strategies to integrate CP in the context of everyday lives. The overall experience can be defined by factors that promote (facilitators) or hinder (barriers) quality of life for the child, the caregiver and family. Parental &/or family priorities can converge (overlap) with or diverge from (compete with) the priorities of their child with severe disability.

Conclusions: Understanding the priorities of parents caring for a child with severe disability, can better inform the development of policies, programs, services and interventions to address these priorities for the child and the family as a whole, as well as underpin the development of outcome measures to evaluate the effectiveness of these interventions.