Please enable JavaScript or talk to your local administrator to get JavaScript enabled.
Skip filters
Skip facets
Research Organization
  • 11

  • 7

  • 5

  • 4

  • 4

  • 4

  • 4

  • 4

  • 4

  • 3

Researcher
City
State
Country
Start Year
Active Year
Similar Projects for

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)

 
150
Projects
USD 28.6 M
Aggregated funding amount
USD 191 K
Average funding amount
Project list item
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
Project list item
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
Project list item
Pain education for improving pain health literacy and quality of life after spinal cord injury

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

USD 400,000
2019 - 2022
Project list item
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
Project list item
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
Project list item
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
Project list item
Breastfeeding and Spinal Cord Injury: Establishing guidelines for health professionals and consumers

Craig H Neilsen Foundation to Andrei Krassioukov

USD 300,000
2018 - 2021
Project list item
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
Healthy and Active Lifestyles for Individuals with SCI

Craig H Neilsen Foundation to Diana Helt

USD 30,000
2018 - 2019
Project list item
Patient Engagement Intervention in Inpatient Spinal Cord Injury Rehabilitation

Craig H Neilsen Foundation to Wing (Alex) Wong, Piper Hansen, Peggy Barco, Ana Baumann Walker, Eric Lenze, Wing (Alex) Wong

USD 199,941
2018 - 2020
Project list item
Enhancing peer mentoring to promote independence and community participation after rehabilitation

Craig H Neilsen Foundation to Katherine Froehlich-Grobe

USD 75,000
2018 - 2019
Project list item
Accessible Van for Therapeutic Recreation

Craig H Neilsen Foundation to Nicole Swaggerty

USD 50,000
2018 - 2019
Project list item
Innovation in Lodging Industry's Information on Accessibility: Part 2

Craig H Neilsen Foundation to Shu Cole

USD 100,000
2018 - 2019
Project list item
Improving functional capabilities of children and adolescents with spinal cord injuries in Oklahoma

Craig H Neilsen Foundation to Heather Walter

USD 35,634
2018 - 2019
Project list item
Wellness support for persons with SCI and their caregivers

Craig H Neilsen Foundation to Cathy O Flanagan

USD 57,400
2018 - 2019
Project list item
Collaborative Education and Caregiving Program

Craig H Neilsen Foundation to Erin Brinks

USD 40,794
2018 - 2019
Project list item
Acquisition of FES Bike for Therapy Services Gym in Ranken Jordan's new 26-Bed Wing

Craig H Neilsen Foundation to Jennifer Brown

USD 31,880
2018 - 2019
Project list item
SCI Recreation & Fitness Outreach Project

Craig H Neilsen Foundation to rick smith

USD 55,000
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
load more...