Exploring Quality of Life of Adults with Spinal Cord Injuries

Abstract

Measurements of quality of life have been an important research focus in rehabilitation and medicine. Analyses indicated that for 12 persons with spinal cord injury significant quality of life domains identified through a ranking procedure were different from domains identified through small group discussions. If replicated with larger groups, we would advocate direct responses obtained through small group or individual discussions.

Quality of life after spinal cord injury: a meta-synthesis of qualitative findings

“…91 Engagement in meaningful occupations was connected to a sense of selfworth: 'I set my own goalsywhen I achieve them it makes me feel good about myself'; 73 'I'm doing something good with my lifeyand I have more self-esteem which is important to me'. 12 Echoing and overlapping the previous theme, engagement in occupations following injury had evidently Able to make a difference 91 New opportunities 12,53,73 Basic needs must be met 53 See I'm the same 73 Inherent need to contribute 12 New 'I ams' 73 Cold/snow 101 Treat me the same 73 Need to give back 12 12,73,91 Work is important 53,69,91,101 Bureaucracy/red tape 12,69,91 More empathy now 53 Need to be productive 69,101 Discrimination 73,101 QOL is caring people 91 Not being bored 69,101 Disabling policies 12,69,91,101 Not taken for granted 73,101 Creativity 53 Medical insurance 69 Interacting with others 69,73 Doing what you want to do 12,53 Urban infrastructure 101 Learning from peers 73,91,101,110 Doing things benefits health 101 Access to equipment 69 Need to do things …”

“…69 'Without having a quality attendant caregiver, my ability to do much of anything is severely restricted'. 53 In Canadian studies 12,101 finances were identified as constraints to the purchase of adapted vans or the pursuit of expensive leisure activities but not to attaining health-care or a meaningful every-day life: 'There's funds available [and] the technology's available to keep you mobile and healthy y[when] I did work I participated in support of the system and now that I need it, it's working for me'. 12 In both the US and Canada it was noted that the social environment could exert a negative impact on those with SCI, taking the form of bureaucratic 'red tape' 91 or 'power trips' 12 -'Freedom is still extremely limited.…”

“…For example, while some people identified feelings of helplessness, uselessness, valuelessness and worthlessness following SCI 12,91 that persisted among some people 110 many identified ways in which a positive sense of self-worth -of being capable, valuable and useful -had been re-established through renewed participation in meaningful occupations 12,73,101 ('I don't feel disabled any moreyI have a job like everyone else' 73 ), contributing to others, 53 attaining financial security 'and not just living off the government', 69 'getting involved', becoming competent and capable, 73 achieving goals, feeling productive and taking pride in accomplishments. 53,73,101 For example: 'It takes a long time to see value and self-worth are continuing and not tied to physical status'; 12 'It's ok to resign yourself to the fact that you're going to be like this probably for the rest of your lifeyIf something better comes along that's good, but don't depend on it. Work towards your own self-employment or your own self-worth'.…”

“…They think you are worth it and you see that you are valued and start to value yourself'. 12 The ability and opportunity to contribute to others 12,53 was an important dimension of meaningful relationships.…”

Measuring quality of life of persons with spinal cord injury: external and structural validity

“…Individuals with SCI have identi®ed that a positive`attitude toward life' to facilitate coping and acceptance, signi®cantly in¯u-ences QOL. 43 Many items within this factor were part of the psychological and spiritual domain of the original QLI. Sex life was originally an item within the health and functioning domain of the QLI, and appears conceptually out of place.…”