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Project

Implementation Considerations for a SCI Caregiver Support Program

Funder: Craig H Neilsen Foundation

Funding period
USD 97 K
Funding amount
Abstract
The purpose of the study is to describe informal networks, such as family caregivers of individuals with SCI, and the critical gaps in the supportive care system in order to identify needs of family caregivers in providing care for persons with spinal cord injuries (SCI). Our preliminary assessment highlighted significant unmet service needs for informal networks, such as skills training needs, as well as gaps in the literature. Given the numerous roles that family caregivers play in the care processes and overall quality of life of individuals with SCI, there is an increase in caregiver burden which could threaten the sustainability of critical supports if the skill needs are not addressed accordingly. The study’s overall goal is relevant in addressing the gaps in the previous literature as it seeks to identify various skills needed in order to alleviate role overload. Specifically, the objectives of the proposed study are to identify various family (spouse, parent, child, sibling) caregiver roles, the perceived skills needed in providing appropriate support to individuals with SCI, and the perceived facilitators and barriers in providing care and obtaining the skills needed. The findings will be used to inform specific components/modules of a caregiver skills training intervention consistent with the needs of family caregivers. The current study will take a descriptive qualitative approach whereby the lived caregiver experiences will be explored. Given the potentially important synergistic effects of caregiving whereby caregivers and care recipients mutually affect each other, this study will address its objectives in a dyadic manner. The Knowledge-to-Action (KTA) framework will be used to guide the overarching conceptualization of the current program of research. In addition, the Theoretical Domains Framework (TDF) will be embedded within the KTA framework so as to guide the effective development of a complex evidence-based intervention. Purposive sampling by time since injury and caregiver relationship will be used to recruit participants from the Rick Hansen Institute SCI Community Survey. Semi-structured interviews will be administered to both the individual with SCI and his/her caregiver separately. Qualitative thematic analysis will be performed to code and analyze the data. We anticipate that the participants will portray a greater need for practical skills as well as skills in symptom assessment and management, which is aligned with our parent study reporting a greater role and burden in these areas of caregiving. A major strength of this study is that it will improve quality of life as it seeks to address key gaps in the previous SCI literature. Understanding the ways in which the individual with SCI and the caregiver converge or diverge in their perspectives of situations/experiences and each other’s needs has significant implications in planning (hospital and community-based interventions) to improve health outcomes. (CHN: PSR chn:wdg)
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System

Categories
  • FOR (ANZSRC)

    1117 Public Health and Health Services

  • FOR (ANZSRC)

    1701 Psychology

  • RCDC

    Injury (total) Accidents/Adverse Effects

  • RCDC

    Injury - Trauma - (Head and Spine)

  • RCDC

    Spinal Cord Injury

  • RCDC

    Clinical Research

  • RCDC

    Neurodegenerative

  • Health Research Areas

    Population & Society

  • Broad Research Areas

    Public Health