Experiences of participation in everyday occupations among persons aging with a tetraplegia

Abstract

Aging with a SCI is a complex daily struggle in order to be able to continue acting and participating in everyday occupations, and thereby this gives implications for a lifelong support. This study provides knowledge that can guide clinicians in their work within this complex area of rehabilitation. Knowledge from this study can guide the work with policy recommendations for healthcare and social service systems.

Housing accessibility and its associations with participation among older adults living with long-standing spinal cord injury

“…29 As described in a recent study, older adults with SCI experience frustration when activities of daily living take precedence over more rewarding activities. 37 This suggests that activities such as those included in the IPA domains "autonomy indoors" and "family role" are important and need to run smoothly in an accessible environment to allow time and energy to be spent on more meaningful activities. Thus, an accessible environment is important in several different ways to enable activity.…”

“…Lundström et al have studied the experience of participating in everyday activities among people aging with tetraplegia. 37 They found that after a number of years living with their SCI, the participants changed their priorities and chose to drop activities which were too demanding in favor of less demanding ones, thus adapting to their situation and capacity. 37 Similarly, in a previous study, using a sub-sample of the SASCIS, focusing on autonomy and objective accessibility among the powered mobility users (N = 48), Pettersson et al found that the longer the participants had lived with their injury, the less restrictions they perceived as having regarding autonomy indoors.…”

“…37 They found that after a number of years living with their SCI, the participants changed their priorities and chose to drop activities which were too demanding in favor of less demanding ones, thus adapting to their situation and capacity. 37 Similarly, in a previous study, using a sub-sample of the SASCIS, focusing on autonomy and objective accessibility among the powered mobility users (N = 48), Pettersson et al found that the longer the participants had lived with their injury, the less restrictions they perceived as having regarding autonomy indoors. 21 Since everyone in our study sample had lived with their injury for at least ten years, adaptation over time could be a reason as to why many of the participants were quite content with their participation and reported few or no participation problems.…”

“To Work Just Like Anyone Else”—A Narrative from a Man Aging with Spinal Cord Injury

“…To deepen our understanding of and address this knowledge gap, through several studies [ 22 , 23 , 24 , 25 ] we have generated knowledge that can be valuable for improving rehabilitation interventions and that can guide work through policy recommendations for social service systems, in order to enable participation in occupations for people aging with SCI. Occupations which can be seen as all the things that people do and engage in, alone or together with others in their everyday lives [ 4 ].…”

“…The previous studies have focused on how participation in occupations changes over time, as a result of secondary health complications and the increased need to save strength and energy [ 22 , 23 , 24 ]. In addition, it has become clear that support systems (including rehabilitation, personal assistance, and assistive devices) do not always support participation in occupations [ 23 , 24 , 25 ]. All of these factors together, caused anxiety, uncertainty, and frustration, as everyday life has turned out to be a complex daily struggle.…”