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NIDDR-Funded SCI Caregiver Study

Developing a Relevant Instrument to Assess Caregiver Distress and Benefit in Spinal Cord Injury

PI: Susan Charlifue, PhD
Funded by: National Institute on Disability and Rehabilitation Research
Grant Number: H133G090013
Dates: 2009 - 2013
Contact: Susan Charlifue ( or 303-789-8306)

Following a spinal cord injury (SCI), a person may have significant functional limitations that prevent a realization of full independence. In such cases, help from others is needed, and this is often provided by a family member. The responsibility of caregiving can carry with it several risks, potentially leading to physical injury and emotional distress not only for the caregiver but also the person with SCI. While caregiving has been studied extensively among those providing assistance to frail elderly, or cognitively impaired individuals, there has been relatively little focus on caregiving in SCI. In addition, although the literature is replete with more global assessment tools to measure “caregiver distress,” no such instrument is available for the specific issues facing SCI caregivers. To address this gap, the proposed project will employ a combined qualitative and quantitative methodology to develop a relevant instrument to assess caregiver distress and benefit in SCI. The project will use a focus group methodology identify areas of concern for family members providing assistance to a loved one with SCI. The lived experience of SCI caregiving, as expressed by the caregivers themselves, will help identify what factors are associated with positive or negative experiences for SCI family caregivers. From this rich contextual information, a new measure to assess distress and benefit in SCI caregiving will be developed.

Led by Craig Hospital in Englewood, Colorado, the proposed project is a collaborative research effort with three other prominent SCI rehabilitation facilities: University of Alabama at Birmingham, Santa Clara Valley Medical Center in San Jose, California, and the Kessler Medical Rehabilitation Research & Education Center/Kessler Foundation in West Orange, New Jersey. A minimum of 16 focus groups of family caregivers will be convened. The broad geographic catchment areas represented by the four collaborating centers will enable us to convene focus groups of individuals from ethnic minorities – specifically, African American, Hispanic and Asian, as well as Caucasian family caregivers. Evidence in the literature suggests the responses to family caregiving are largely influenced by cultural practices and beliefs. Detailed qualitative analysis of the focus group transcripts will identify themes and concepts that will be operationalized into questions for a new instrument to assess caregiver distress and benefit in SCI. The instrument will be pilot tested with 250 family SCI caregivers. Items for a final instrument will be selected following factor analysis and Rasch analysis

This study will add to the sparse literature on SCI caregiver distress and benefit by exploring issues that are specific to this group of individuals. It will also enable us to examine cultural differences voiced by family caregivers of people with SCI. The knowledge gained from this research will benefit clinicians as they work with families early during the SCI rehabilitation process and in the years beyond, enabling them to have a more relevant means of assessing SCI caregiving issues. We anticipate the study ultimately will benefit individuals with SCI themselves, as it has been noted that erosion in the health and well-being of the primary caregiver may lead to the development of expensive and preventable secondary complications in the person with SCI. Therefore, our improved abilities to identify specific areas of caregiver distress and/or benefit in SCI will enable clinicians, caregivers themselves, and their family members with SCI work on addressing and potentially eliminating the stressors and capitalizing on the positives of caregiving.