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Project

Caregiver Adaptation to Caring for a Child with SCI Undergoing Activity-based Therapy

Funder: Craig H Neilsen Foundation

Funding period
USD 400 K
Funding amount
Abstract
Overall Objective: The primary objective of this study is to understand caregiver adaptation and family functioning in the context of having a child with spinal cord injury (SCI) undergoing intense, restorative therapies, specifically, activity-based therapy (ABT) Background and Relevance: As healthcare professionals, we focus on providing evidence-based care to improve the physical function of children who have suffered a SCI. However, it is well-known that optimal outcomes for typically developing children and those with special healthcare needs are reached within a positive caregiving environment, with parents providing the means to meet basic caregiving demands until the child can perform those tasks unaided. Identifying factors that help families adapt to a child with SCI, a changing child and changing caregiving demands is important for understanding the path to optimal family functioning and for the development of interventions to help parents. As is true with other chronic conditions, family adaptation is critical to the long-term improvement in child functioning. To develop interventions that support family adaptation and shared decision-making regarding the child with SCI, it is critical to identify the specific demands, stressors, and capabilities of the parents/caregivers and how families cope. Due to improved understanding of neuroplasticity, a paradigm shift in rehabilitation, and emerging restorative therapies, children have the potential for improved outcomes following SCI. The proposed project is novel in that ABT is a restorative-based therapy with expectations of change and there is a gap in the literature related to family adaptation to having a child with SCI and to caring for a child undergoing ABT. While meaningful physical change may occur, stressors likely exist with participation in intensive therapies, especially if away from home. Our findings will inform the development of interventions to support caregivers during this potentially stressful situation and may have implications for all parents with children with SCI as well as those undergoing ABT or other emerging restorative therapies.Specific Aims:Aim 1 is to describe caregiver perceptions of and evaluation of dynamic child capabilities.Aim 2 is to describe caregiver perceptions of parental caregiving and caregiver adaptation.Aim 3 is to synthesize the data from Aims 1 & 2 to understand optimal family functioning within the context of having a child with SCI undergoing ABT. We will conduct a prospective, mixed-methods study focused on caregivers’ experiences during ABT. We will describe child and caregiver characteristics. We will collect longitudinal qualitative data to identify themes that are consistent across families, as well as those that emerge in individual families or in the context of specific changes in children’s capability. Simultaneously, we will utilize standard quantitative methods to describe child, parent/caregiver (e.g. anxiety, coping, support), and family factors. We will synthesize outcomes to develop a protocol for family function screening and caregiver intervention for use in parallel with physical restoration, ABTs. (CHN: PSR chn:wdg)
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System

Categories
  • FOR (ANZSRC)

    1117 Public Health and Health Services

  • FOR (ANZSRC)

    1701 Psychology

  • RCDC

    Injury (total) Accidents/Adverse Effects

  • RCDC

    Injury - Trauma - (Head and Spine)

  • RCDC

    Neurosciences

  • RCDC

    Mind and Body

  • RCDC

    Spinal Cord Injury

  • RCDC

    Behavioral and Social Science

  • RCDC

    Clinical Research

  • RCDC

    Neurodegenerative

  • RCDC

    Pediatric

  • Health Research Areas

    Clinical

  • Broad Research Areas

    Public Health