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Development of the International Spinal Cord Injury Basic Data Set for informal caregivers

Spinal Cord, 2022 · DOI: https://doi.org/10.1038/s41393-022-00810-0 · Published: May 17, 2022

Spinal Cord InjurySocial SupportResearch Methodology & Design

Simple Explanation

Caregivers of individuals with spinal cord injury or disorder (SCI/D) aid with many aspects of medical care, functional activities, and psychosocial wellbeing, especially in areas where individuals with SCI/D have not reached total independence. This study aimed to develop a standardized data set for informal caregivers of individuals with SCI/D, which can be used to harmonize international research on caregiving and as a clinical tool to screen for caregiver needs. The developed data set includes 7 items intended for self-administration among informal caregivers of individuals with SCI/D across the lifespan to standardize data collection.

Study Duration
Not specified
Participants
39 caregivers of children with SCI/D
Evidence Level
Mixed-methods study, multi-center repeated measures design

Key Findings

  • 1
    The beta test form included 27 items, covering 3 domains: (1) demographic information for persons providing care; (2) caregiver’s allocation of time and satisfaction; and (3) perceived burden of caregiving.
  • 2
    There was moderate to excellent reliability for the majority of variables in the beta test form.
  • 3
    The final version of the data form contains 7 items and is intended for self-administration among informal caregivers of individuals with SCI/D across the lifespan.

Research Summary

This study describes the development of an International Spinal Cord Injury Basic Data Set for caregivers of individuals with SCI/D, intended for research and clinical settings. The data set was developed through expert consensus and field testing, resulting in a 7-item self-administered form for informal caregivers. The data set aims to standardize data collection and reporting about informal caregivers, advancing the understanding of this population and screening for their needs in clinical settings.

Practical Implications

Standardized Data Collection

The International SCI Basic Data Set for Informal Caregivers can be used to standardize data collection and reporting about informal caregivers for individuals with SCI/D.

Improved Understanding

The data set can advance the understanding of the informal caregiver population.

Clinical Screening

The data form has additional utility to screen for caregiver needs in clinical settings.

Study Limitations

  • 1
    Field testing only involved caregivers of youth with SCI/D, all of whom identified as parents.
  • 2
    Reliability testing of the revised data set is required with a more heterogenous group of caregivers, including individuals who assist adults with SCI/D.
  • 3
    The basic data set captures caregivers and their experiences at a discrete moment in time.

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