ObjectivesTo describe the association between sociodemographic and spinal cord injury characteristics, of people living with spinal cord injury, and participation and quality of life, and to study the association between participation and quality of life in this group of people.
DesignPersons registered in the Norwegian Spinal Cord Injury Registry after post-acute rehabilitation between 2011 and 2017 were invited to participate in a survey in 2019 when they were in a community setting.
SubjectsA total of 339 people living with spinal cord injury.
MethodsThe Frequency scale and Restrictions scale of the Utrecht Scale for Evaluation of Rehabilitation-Participation were used to measure participation. Quality of life was measured as life satisfaction with the World Health Organization Quality of life assessment (WHOQoL-5) and mental health was measured using the Mental Health subscale (MHI-5).
ResultsOverall, sociodemographic characteristics were more prominently associated with quality of life and participation than were spinal cord injury characteristics. Currently working as main activity and having a family income in the highest quartile were associated with higher scores on all 4 measures of participation and quality of life. There was a strong gradient between higher level of participation (frequency and restrictions) and better quality of life.
ConclusionParticipation was strongly associated with life satisfaction and mental health in people living with spinal cord injury. This indicates that participation issues should be given greater priority during post-acute rehabilitation, follow-up and subsequent care efforts provided in the community.LAY ABSTRACTHaving paid work, leisure-time activities and good relationships with other people is important for one’s quality of life. For people living with spinal cord injury, it may be more difficult to participate in such activities than it is for people without health problems. A survey on participation problems was carried out among Norwegians living with spinal cord injury. Sociodemographic factors, such as family income and education, were found to have a greater impact on quality of life and participation, than the severity of the injury itself. Participation was strongly associated with life satisfaction and mental health. This indicates that participation issues should be given greater priority.Key words:
spinal cord injuries, participation, quality of life, NorwayParticipation provides opportunities for the fulfilment of basic human needs and can be an important determinant of quality of life (QoL) (
1). Persons living with spinal cord injury (SCI) may, however, experience restrictions or barriers to participation in different domains, including employment or social-recreational activities (
2). Research on issues related to participation problems among persons with SCI is, however, limited. In a critical systematic review on social and community participation following SCI (
3), the authors emphasized that the samples in the reviewed studies were relatively small, that the instruments used were often developed before the introduction of the International Classification of Functioning, Disability and Health (ICF), and that the use of the term ”participation” varied. In addition, knowledge about the impact of injury characteristics on participation is underdeveloped (
2). Furthermore, limited attention has been given in the literature to how clinical practice can be adapted to improve participation in persons with SCI. To do so, more knowledge of factors influencing participation is needed.In the ICF, ”participation” refers to the involvement of an individual in a life situation and represents the social perspective on functioning (
4). To measure participation, it has been recommended to measure participation both as the so-called objective state and subjective experience (
5). Objective participation can be measured as self-reported frequencies of behaviour, while subjective participation concerns self-reported experienced restrictions in participation in society. It has been commented that the ICF definition of participation does not adequately capture this (
6).QoL is a broad concept, and has been defined by the World Health Organization (WHO) as the individuals’ perceptions of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. It can be operationalized to distinguish between the cognitive component that refers to life satisfaction and the emotional component that refers to a person’s affect or mental health (
8).People with SCI experience lower QoL, as shown by higher levels of distress, worse mental health and lower levels of life satisfaction compared with the general population (
9,
10). Studies have indicated that decreased mobility (
11,
12), having secondary impairments (
11,
12), pain (
11,
13) and unemployment (
14) are associated with lower QoL. Increased QoL has been associated with psychosocial characteristics, such as higher self-efficacy (
15), good social skills (
15), more social support (
9) and a feeling of acceptance (
16). The associations between QoL and age, sex, education, injury level and injury duration are inconsistent (
9,
12,
17). However, there is variation in study design, inclusion criteria, and measure instruments, and cohort studies with a representative sample and sufficient sample size have been requested (
9).Studies exploring the association between participation and QoL indicate that participation is related to higher life satisfaction (
1,
18). However, little is known about risk groups for poor participation and poor QoL and knowledge about risk profiles can help in intervention planning.The objectives of this study were therefore to assess participation and QoL with validated generic measurement instruments in a representative sample. Specific aims were: (
i) to describe the association between sociodemographic and SCI characteristics with participation and QoL; (
ii) to detect groups at risk for low participation/poor QoL; and (
iii) to study the association between participation and QoL.
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