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Craig Caregiver Assessment of Rewards and Effort (C2ARE) - Validation of a new tool to assess caregi

Funder: Craig H Neilsen Foundation

Funding period
USD 400 K
Funding amount
Abstract
The most commonly studied themes of caregiving focus on stress, depression, and burden. However, as interest and awareness of caregiver needs increase, investigators are looking at other factors related to caregiver distress and life satisfaction. This is particularly important due to the fact that a growing number of people provide intensive, long-term care for their family members. Providing care and support to a family member with spinal cord injury (SCI) encompasses more than assisting with personal care and daily living activities. In addition, the health and well-being of the caregiver is an essential component that helps enable the person with SCI to function as independently as possible and participate in society. Most instruments used to measure the specific areas of “burden” have been designed for use with caregivers of individuals with cognitive impairments, focusing largely on behavioral issues. Many of these instruments are designed to assess a single dimension of caregiving, such as burden or satisfaction, while others are multidimensional. However, no single instrument exists to capture the overwhelmingly physical aspects of providing assistance to someone with SCI, in addition to the very personal nature of care such as bowel and bladder management, the long-term nature of SCI caregiving and the related family stressors that may exist. Studies to create an instrument that can be used to evaluate SCI family caregiver distress and benefit in both the civilian and veteran populations recently were completed, which involved focus groups of family caregivers to both civilians and veterans sites across the U.S. Focus group participants were asked to identify issues related to the positive and negative aspects of caregiving. Qualitative analysis of the focus group transcripts, development of relevant questions, and subsequent analyses led to the creation of a new tool - the Craig Caregiver Assessment of Rewards and Effort (C2ARE). The C2ARE tool was developed using Rasch analyses in a sample of 151 caregivers of civilians with SCI with further analyses and validation in a sample of 80 caregivers to veterans with SCI. In the current study information regarding the C2ARE will be mailed to family caregivers across the US and Canada who have family members who have been treated at Craig Hospital, the Cleveland VA or the Toronto Rehabilitation Institute in the past. Test-retest reliability will be assessed with a subset of the primary sample. Rasch analysis will be used to assess psychometric properties of the C2ARE, in combination with more traditional psychometric measures such as interclass correlation to evaluate retest reliability. We will explore the following in the validation sample 1) dimensionality of the measure, 2) item fit within subscales, 3) item hierarchy within subscales, and 4) within-item categorical monotonicity. Results of this analysis will not only investigate the psychometric properties of the instrument as applied to the validation sample, but, when compared to results of the original studies, will indicate the degree to which the instrument is consistent. (CHN: PSR chn:wdg)

 
39
Projects
USD 9.2 M
Aggregated funding amount
USD 236 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
2019 - 2022
Project list item
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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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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Caregiver Adaptation to Caring for a Child with SCI Undergoing Activity-based Therapy

Craig H Neilsen Foundation to Andrea L Behrman, Deborah Davis, Kyle Brothers

USD 400,000
2019 - 2022
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Collaborative Education and Caregiving Program

Craig H Neilsen Foundation to Erin Brinks

USD 40,794
2018 - 2019
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Wellness support for persons with SCI and their caregivers

Craig H Neilsen Foundation to Cathy O Flanagan

USD 57,400
2018 - 2019
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Creating a Training Program for Enhancing Relations Between Informal Caregivers and Adults with SCI

Craig H Neilsen Foundation to Meredith A Rocchi, Heather L Gainforth

USD 127,600
2018 - 2020
Project list item
Development and Initial Validation of the PedsQL (TM) - SCI Module

Craig H Neilsen Foundation to Lawrence Cabell Vogel, Mary Jane Mulcahey, Kathy Zebracki, James W Varni

USD 399,086
2018 - 2021
Project list item
Illuminating and expanding relational autonomy for adults with SCI towards enhanced quality of life

Craig H Neilsen Foundation to Bonnie Lashewicz

USD 199,973
2018 - 2020
Project list item
Aging trajectories of chronic disease, psychological morbidity, and mortality in spinal cord injury.

Craig H Neilsen Foundation to Mark Peterson, Tony Chiodo, Denise G. Tate, Neil Kamdar, Mark Peterson

USD 200,000
2018 - 2020
Project list item
Identifying Patient-Centered Outcomes to Guide Use of Robotic Exoskeletons After Spinal Cord Injury

Craig H Neilsen Foundation to Manon Maitland Schladen, Suzanne Groah, Rochelle Tractenberg, Alexander Libin, Pete Lum

USD 149,671
2018 - 2020
Project list item
The Occupational Performance Coaching Model for Caregivers of Youth with SCI: A Feasibility Study

Craig H Neilsen Foundation to Mary Jane Mulcahey, MaryJane Mulcahey

USD 200,000
2018 - 2020
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Using Community Partnerships to Promote Strength, Wellness & Foster Independence in Indiv. w/ SCI

Craig H Neilsen Foundation to Lauren Vagelakos

USD 53,119
2017 - 2018
Project list item
Professional Service Program

Craig H Neilsen Foundation to Karena L. Rogers

USD 25,000
2017 - 2018
Project list item
Validation of the SCI Pressure Sore Onset Risk Screening (SCI-PreSORS) Instrument

Craig H Neilsen Foundation to Anthony Burns, Jude Delparte

USD 298,296
2017 - 2019
Project list item
Integrating Patient-Centered Outcomes in Rehabilitation and Community Spinal Cord Injury Care

Craig H Neilsen Foundation to Sara Ahmed, Dalton L. Wolfe, Susan Bartlett, Ben Mortenson, Robert Kent, Richard J. Riopelle, Vanessa Noonan, David Tulsky, Sara Ahmed, Diana Zidarov

USD 380,882
2017 - 2020
Project list item
Development of a Psychosocial Symptom Monitoring and Self Management System for Individuals with SCI

Craig H Neilsen Foundation to David Tulsky, David Victorson, Pamela A Kisala, Jerry Slotkin

USD 399,610
2017 - 2020
Project list item
Optimization of Medication Management for Community-Dwelling Persons with Spinal Cord Injury

Craig H Neilsen Foundation to Sara Jane Taylor Guilcher, Sander Lorne Hitzig, Tanya Packer, Tejal Patel, Aisha Lofters

USD 197,788
2017 - 2020
Project list item
Developing a Patient-Centered Measure of Caregiver Relationships

Craig H Neilsen Foundation to Martin Forchheimer, Denise Tate, Noelle Carlozzi, Stephen G Schilling

USD 400,000
2017 - 2020
Project list item
Validation of the International SCI Quality of Life Basic Data Set (SCI-QOLBDS)

Craig H Neilsen Foundation to Denise Tate, Martin Forchheimer, Stephen Schilling, Susan Charlifue, Julia Maria D'Andrea Greve, Marcel Post, Peter New, Denise Tate

USD 400,000
2017 - 2020
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