Examining How the Perception of Health Can Impact Participation and Autonomy Among Adults with Spinal Cord Injury

Abstract

Background: Studies examining participation as defined by the International Classification of Functioning, Disability and Health (ICF) as well as autonomy among the spinal cord injury population (SCI) are only starting to emerge. Little research has looked at how this population perceives their health status and the role this plays in active participation within their lives. Objective: This exploratory study was developed to determine whether the perception of health has an impact on participation and autonomy among adults with SCI. Methods: A convenience sample of adults with SCI currently receiving outpatient services from a rehabilitation hospital completed the online questionnaire. Forty-two subjects responded and were categorized into 2 groups: Group 1, positive perceived health, and Group 2, negative perceived health. The sample completed the Impact on Autonomy and Participation (IPA) that has 5 subscales (autonomy indoors, family role, autonomy outdoors, social life, and work/education) and demographic questions. Results: Multivariate analysis of variance (MANOVA) revealed that perceived health had a significant impact on family roles, autonomy outdoors, social life, and work/education. Perceived health did not have a significant impact on autonomy indoors. Conclusion: The perception of health may have an impact on participation and autonomy within the areas of family role, outdoors, work/education, and social life. Implications for rehabilitation are included.

Social participation and personal autonomy of individuals with spinal cord injury

“…The primary studies included were in English, Spanish and Portuguese, regardless of the methodological design, published between January 2006 and December 2016. This cut-off period was used because there are few studies that analyze how people with SCI perceive the role of social participation and personal autonomy, as defined by the CIF, in their lives (16) . The search strategy was applied to the electronic databases on September 17, 2016 and updated on June 5, 2018.…”

Factors Influencing Participation in Daily Activities by Persons With Spinal Cord Injury: Lessons Learned From an International Scoping Review

“…-Substance abuse 38 -Anxiety, sleep disorders, and frustration interfere with employment 30,72 Coping -Bowel and bladder management skills 73 -Mobility skills/ability to make transfer [73][74][75] -Wheelchair propelling increase functional ability [74][75][76]49 -Physical functions 74,77 -Capacity to work and do sport activities, 78 associated with functional capacity, and indoor mobility 79 Secondary health complications, eg, increasing pain in the shoulders and muscles, 44 bowel-bladder problem, progressive muscle weakness, fatigue, apnea, 30 poor balance and coordination, spasticity, 37,68,78,45,80 presence of pressure sores 73,44 - -Devices/mobility devices such as adapted car, 18,27,45,51,82 power/electric wheelchair, light-weight wheelchair, 51,83 personal assistance 20…”

“…-Positive relationship and attitude with neighbors 47 partner, family members 56,68,81,87,90 -Intimate relationship, multiple relationships, and supports from family members, friends, and SCI peers 45,58,59 -Availability of social support 70 -Avoid interactions, negative assumption about disabilities, negative comments, discrimination 51 -Social stigma 49 -Poor social support networks 37,91 Maintaining relationship with neighbors, health professionals, and family members -Criticism, negative attitudes, and insulted by other people 31,57 -Exclusion from society (even family members' negative attitude acts as barrier) 40,57 -Struggle with social relation and acceptance 48 (Continued) -Occupational story making (therapist and client make a visionary story of meaningful future) 21 -Freedom to restructure occupational identity 22,59 -Availability of home-or community-based adaptation services 49 -Reciprocity in dealing with community, improving own community, sharing ones' life story, doing volunteer work, or educating each other 51 Lack of freedom of choice in community life 56 -Unemployment and lack of opportunities 10,31,57 -Limited resources in community-based rehabilitation 10…”

“…-Lack of equipment 27,54 -Poor wheelchair fitting 54,76 Assistive or mobility devices such as manual wheelchair 10,40 Limited devices and advance technologies such as electric devices, mobility aids, mobility/ sitting equipment appropriate to terrains 10,57 and routines 50.51 -Retraining occupations 45 -Modifying occupations, self-selecting occupations 51,85 -Executing life role occupations 51,50 inside or outside of home 20,50,51,55,56,68,71,72,86 -Performing previous valued occupations 51,55 -Be engaged in various life roles 21,49 or "occupying time" 22 -Be engaged in family-based activities 51 -Appropriate therapeutic goal and discharge planning 47,56,87 -Regular consultancy and follow-up 49,21 -Poor function after injury 45 -Killing time or wasting time or meaningless occupations 49,51 -Physical inactivity or activity limitation 47…”

Systolic and diastolic function in chronic spinal cord injury

“…This is not to undermine the large degree of cardiovascular dysfunction experienced by individuals with spinal cord injury: sympathetic impairment leads to blood pressure instability that drastically decreases quality of life by decreasing autonomy and independence and delaying application of therapeutic interventions [59][60][61]. However, it is possible the degree to which spinal cord injury leads to systolic and diastolic dysfunction may be overstated.…”