Everday life while aging with a traumatic spinal cord injury

Abstract: The overall aim of this thesis was to develop knowledge of participation in everyday life while aging with a traumatic spinal cord injury [SCI]. This thesis had an explorative approach, with a mixed method design: two with a quantitative method and two with a qualitative method. In study 1, via a two-part postal survey, 97 participants with a traumatic SCI explored and described their leisure repertoire and how it was related to their interests, performance, and well-being. The results showed that participants were mostly interested in, performed, and experienced well-being from, social and cultural activities. Gender, age, and time since injury were more closely related than the level of injury to interest, performance, well-being, and changed performance in the participants’ leisure repertoire. Study 2 was performed by narrative interviews with eight participants to gain an understanding of participation in occupations from persons aging with a traumatic SCI. The narrative analysis resulted in a description of how they acted to participate in occupations from soon after the injury until several decades later. The results showed that their ability to act and participate in occupations changed over time due to both personal and environmental factors, and that they were concerned about their future. Study 3 described and offered an explanation for how one man viewed meaning in his everyday life while aging with a traumatic SCI. A story emerged from the narrative analysis, which illustrated the importance for the man to be a worker and how experiences of his aging body and secondary health complications [SHC] shattered the story. Our findings show how aging with a SCI influences a person’s experiences of different dimensions of meaning in occupations. Study 4 explored and described participation in activities and the frequency of SHC when aging with a traumatic SCI. Register data were used for the 121 eligible participants, and 73 participants answered a phone survey. The distribution between men and women was 4:1, consistent with the overall prevalence for persons with SCI. The findings show that participation in activities e.g. exercise and active recreation changed in relation to time since injury. Women reported better general health than men; still SHC increased over time, and thereby negatively affected participation in activities. To conclude, this thesis contributes with knowledge of how aging with a traumatic SCI can be a complex daily struggle in order to know how to act and continue to participate in everyday life, especially when SHC increase over time. In addition, experiences of meaning in occupations changed and occupational risk factors such as imbalance, alienation and deprivation occurred as a result of, for example not receiving sufficient and appropriate support from the society. The findings have implications for lifelong rehabilitation and provide knowledge that can guide occupational therapists in their work in enabling possibilities to participate in occupations when aging with a SCI.