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Project

Developing a Patient-Centered Measure of Caregiver Relationships

Funder: Craig H Neilsen Foundation

Funding period
USD 400 K
Funding amount
Abstract
Caregiving is helping people to complete essential tasks. The purpose of this study is to develop a comprehensive, reliable and valid patient-reported measure of the quality of caregiving experienced by people with spinal cord injuries (SCI). While a few measures currently exist, none cover the full scope of pertinent issues and their psychometric properties have not been evaluated. Work will begin by developing a pool of prospective items based on current measures of quality of caregiving. These will be supplemented with items obtained from measures assessing related topics, including measures of caregiver well-being and assessments of the patient-clinician relationship, which will be reworded to be appropriate. Focus groups will then be held, separately with people with SCI and caregivers, about the issues central to the quality of the caregiving relationship and its impact on the wellbeing of people with SCI. Study team members will analyze transcripts of the focus group discussions and develop additional items to include in the item pool based on these results. The study team will then determine whether quality of caregiving should be treated as a unidimensional construct or one with multiple domains (e.g., physical and psychosocial). After redundant items are removed, response choices and wording are made consistent, and they are tested to insure that they are at an appropriate reading level, the item bank will be piloted. Based on results from the pilot interviews, final revisions will be made and the final item bank will be completed by 300 people with SCI who receive caregiver services. The sample will be stratified in terms of both impairment severity and whether or not people primarily receive care from someone with whom they had a relationship prior to SCI. Respondents will also complete legacy measures of related constructs and 100 of them will complete the item bank again, one to two weeks later. Analyses will be conducted using both classical test assessment techniques and contemporary Item Response Theory (IRT) based analyses. Items-level analysis will determine which items are redundant, not adding to the banks explanatory power and these will be deleted. It will then be assessed whether the expected dimensionality of caregiving is observed. The reliability of the new measure will be assessed in terms of test-retest reliability, internal consistency and ceiling and floor effects. The new measure will be validated, using IRT-based methods and via correlations with legacy measures. It will be determined if the measure has similar properties across several factors (e.g., injury completeness, type of caregiver and socioeconomic status) using Differential Item Functioning analysis. Depending upon the length of the developed measure, a short-form version will be developed which explains most of the variance in the full measure. Raw scores will be transformed into standardized ones, with means of 50 and standard deviations of ten. (CHN: PSR chn:wdg)
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System

Categories
  • FOR (ANZSRC)

    1117 Public Health and Health Services

  • RCDC

    Injury (total) Accidents/Adverse Effects

  • RCDC

    Injury - Trauma - (Head and Spine)

  • RCDC

    Spinal Cord Injury

  • RCDC

    Behavioral and Social Science

  • RCDC

    Clinical Research

  • RCDC

    Neurodegenerative

  • Health Research Areas

    Health services & systems

  • Broad Research Areas

    Health Services Research