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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
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)
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    1117 Public Health and Health Services

  • RCDC

    Injury (total) Accidents/Adverse Effects

  • RCDC

    Injury - Trauma - (Head and Spine)

  • RCDC

    Mental Health

  • RCDC

    Mind and Body

  • RCDC

    Spinal Cord Injury

  • RCDC

    Behavioral and Social Science

  • RCDC

    Clinical Research

  • RCDC


  • Health Research Areas


  • Broad Research Areas

    Health Services Research