Understanding the Changing Health Care Needs of Individuals Aging With Spinal Cord Injury

PURPOSE: The purpose of this qualitative study was twofold: to explore changing health care needs of individuals aging with spinal cord injury (SCI) and their caregivers and to identify the environmental supports and barriers to achieving those long-term outcomes.

RATIONALE: Individuals who sustain a traumatic SCI after age 60 experience higher mortality rates. Within this age group, those with incomplete SCI and/or lower injury levels achieve higher levels of independence and overall good health. In addition, nonmedical, environmental, and lifestyle factors influence SCI-related health conditions and affect participation, aging, and longevity.

For individuals with SCI and their caregivers, facilitators and barriers to self-management also affect participation in daily life activities and can arise during the aging process even several years after acute rehabilitation. Maintaining health, maximizing function, and improving level of activity and participation constitute three major rehabilitation outcomes for people with SCI.

DESIGN: This phenomenological study utilized semistructured interviews with individuals who have sustained traumatic SCI and their caregivers.

PARTICIPANTS: After institutional review board approval, a convenience sample of individuals with traumatic, chronic SCI who were ≥60 yr old and caregivers were recruited through the regional SCI center’s registry and advertisement in a newsletter. Full consent was obtained from individuals who were ≥60 yr old and ≥5 yr postinjury. Informed consent was obtained on a smaller group of individuals who sustained SCI <5 yr.

METHOD: Based on a literature review and clinical expertise, two sets of interview questions were created (one for people aging with SCI; one for caregivers). Preliminary interviews were conducted to analyze the clarity and intent of the questions. After questions were finalized, semistructured interviews began and continued until saturation was achieved.

ANALYSIS: Thirty-three interviews have been conducted, audio taped, transcribed, checked, and analyzed. A standard iterative data analysis was performed in which investigators (both individually and as a group for trustworthiness) identified, defined, and coded themes. Additional rigor was achieved by conducting individual checks, multiple rounds of data analysis, and debriefing sessions.

RESULTS: Ongoing analysis reveals seven emergent themes in two categories, which are changes related to the internal or personal factors and external or nonpersonal factors. Internal or personal factors include health literacy, changes in health status, levels of participation, and future orientation. External factors include health services and the physical and social environments.

DISCUSSION: This study contributes to the knowledge of the experience of living and aging with SCI. Health care teams need to first identify the individual’s, and caregiver's, level of health literacy and their utilization of resources. This will facilitate empowerment to overcome barriers to participation through problem solving during the course of rehabilitation post-SCI and throughout the aging process.

IMPACT STATEMENT: As members of interprofessional rehabilitation teams, individuals’ and caregivers’ health literacy and knowledge of and access to resources need to be assessed at each encounter. Every phase of rehabilitation should include opportunities for patients and caregivers to express their concerns and empower them to use resources and solve everyday problems of participation in necessary and meaningful activities to improve their long-term health.