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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)

 
177
Projects
USD 34.3 M
Aggregated funding amount
USD 194 K
Average funding amount
Project list item
Validation of the Spinal Cord Injury Functional Index (SCI-FI) Performance-By-Observation Measure

Craig H Neilsen Foundation to Mary Jane Mulcahey, Daniel Graves, Michael P Stillman

USD 600,000
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Spinal Cord Stimulation for Restoration of Bladder Function

Craig H Neilsen Foundation to Warren M Grill

USD 300,000
2019 - 2021
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Intermittent Hypoxia, Respiratory and Motor Plasticity, and Sleep Apnea

Craig H Neilsen Foundation to Shirin Shafazand, Mark Nash, Monica A Perez

USD 300,000
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Barriers and facilitators to effective bowel care in individuals with spinal cord injury

Craig H Neilsen Foundation to Victoria Elizabeth Claydon, Chris McBride, Rhonda Willms, Heather Gainforth, Maureen McGrath, Vera-Ellen Lucci

USD 95,000
2019 - 2021
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Promoting Sleep and Health Needs of Young Adults with Spinal Cord Injury

Craig H Neilsen Foundation to Alicia M January, Lawrence Cabell Vogel, Kathy Zebracki

USD 190,000
2019 - 2021
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Psychosocial, cognitive, and behavioral consequences of sleep-disordered breathing in SCI people

Craig H Neilsen Foundation to Julio Cesar Furlan, Mark I Boulos, Sander L Hitizg, B. Catharine Craven

USD 200,000
2019 - 2021
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Pain education for improving pain health literacy and quality of life after spinal cord injury

Craig H Neilsen Foundation to Eva Widerstrom-Noga, Lindsey Calle-Coule, Alberto Martinez-Arizala, Kimberly Anderson, Salome Perez

USD 400,000
2019 - 2022
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SCI Thrive: Efficacy of a Peer-led Online Self-Management Program

Craig H Neilsen Foundation to Jeanne M. Hoffman, Amy Starosta

USD 400,000
2019 - 2022
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Craig Caregiver Assessment of Rewards and Effort (C2ARE) - Validation of a new tool to assess caregi

Craig H Neilsen Foundation to Susie Charlifue, Kimberley R. Monden, Richard Goldstein, Susan Charlifue

USD 400,000
2019 - 2022
Project list item
Executive functioning and self-management of health and participation for individuals with SCI

Craig H Neilsen Foundation to Michelle A Meade, James Krause, Seth Warschausky, Stephen Schilling, Carrie Pilarksi

USD 200,000
2019 - 2021
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Internet-delivered cognitive behavioural therapy for persons with spinal cord injury: Randomized con

Craig H Neilsen Foundation to Heather Hadjistavropoulos, Gary Linassi, Eldon Loh, Denise Fyffe, Karen Anzai, Katherine Knox, Kelly Tennant, Marcie Nugent, Dalton L. Wolfe, Rebecca Charbonneau, Robert Teasell, Ryan Sturgeon, Steve Orenczuk, Swati Mehta

USD 386,000
2019 - 2022
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Treatment of Depression Post-SCI: Retrospective Analysis and Feasibility Trial

Craig H Neilsen Foundation to Catherine Jefferson VanDerwerker, Kit Simpson, Chris Gregory, James Krause

USD 150,000
2019 - 2021
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Pathways to learning: a unique recreational exercise certification program for individuals with SCI

Craig H Neilsen Foundation to Ray de Leon

USD 49,837
2018 - 2019
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Enhancing Healthcare for Women with Spinal Cord Injury through a Web-based Information Resource

Craig H Neilsen Foundation to Heather Taylor

USD 300,000
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Closing the Primary Care Gap: Building Healthcare Provider Capacity to Better Serve Women with SCI

Craig H Neilsen Foundation to Chloe Slocum

USD 276,345
2018 - 2021
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Breastfeeding and Spinal Cord Injury: Establishing guidelines for health professionals and consumers

Craig H Neilsen Foundation to Andrei Krassioukov

USD 300,000
2018 - 2021
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ValleyGO! Adaptive Sports Program

Craig H Neilsen Foundation to Teri Todd

USD 72,951
2018 - 2019
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Northwest Wheelchair Tennis Association Event Support and SCI Player Development.

Craig H Neilsen Foundation to John McClaran

USD 35,200
2018 - 2019
Project list item
ZeroG

Craig H Neilsen Foundation to Carol Bonino

USD 100,000
2018 - 2019
Project list item
Providing community-based adaptive sports to improve the quality of life of those living with SCI

Craig H Neilsen Foundation to Dave Simonson

USD 100,000
2018 - 2019
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