The experiences of social and community participation of people with non-traumatic spinal cord injury

Linda Barclay, Primrose Lentin, Helen Bourke-Taylor, Rachael McDonald

Research output: Contribution to journalArticleResearchpeer-review

Abstract

Background/aim: Incidence of non-traumatic spinal cord injury in Australia is increasing, which will result in more occupational therapists being involved in the rehabilitation of this group in the future. The profile of people with non-traumatic spinal cord injury differs from people with traumatically acquired spinal cord injuries, and their long-term health and well-being outcomes are not known. The aim of this study was to explore the experience of returning to social and community participation following non-traumatic spinal cord injury. Methods: Qualitative methods were used for this study. Semi-structured interviews were conducted with seventeen people with non-traumatic spinal cord injury who had returned home. Data were analysed inductively utilising the thematic analysis method. Results: The process of returning to social and community participation following non-traumatic spinal cord injury was identified as occurring in three main stages: withdrawal; re-emergence into society; and stability. Each stage consisted of adjustment and adaptation in a number of areas, including: the loss of independence; the experience of being out in public; social networks; participation in productivity roles; and expectations regarding satisfactory social and community participation. Many of the participants had developed or were developing strategies to adapt to the changes experienced in these stages. Conclusion: By using a qualitative approach, this study adds to the understanding of the adjustment process experienced by people following non-traumatic spinal cord injury when they return to living in the community. Although findings parallel those of studies conducted with people with TSCI, there are some differences that may warrant alternative approaches from occupational therapists working with people with NTSCI. Such approaches include assisting people with NTSCI to modify their expectations regarding how they will participate in the community, assisting them to find new meaningful roles, and facilitating the development of new social networks to replace lost ones.

Original languageEnglish
Number of pages7
JournalAustralian Occupational Therapy Journal
DOIs
Publication statusAccepted/In press - 29 Aug 2018

Keywords

  • community access and participation
  • qualitative research
  • social participation
  • spinal cord injury

Cite this

@article{7c5f387e537b495e9ffd572707806e75,
title = "The experiences of social and community participation of people with non-traumatic spinal cord injury",
abstract = "Background/aim: Incidence of non-traumatic spinal cord injury in Australia is increasing, which will result in more occupational therapists being involved in the rehabilitation of this group in the future. The profile of people with non-traumatic spinal cord injury differs from people with traumatically acquired spinal cord injuries, and their long-term health and well-being outcomes are not known. The aim of this study was to explore the experience of returning to social and community participation following non-traumatic spinal cord injury. Methods: Qualitative methods were used for this study. Semi-structured interviews were conducted with seventeen people with non-traumatic spinal cord injury who had returned home. Data were analysed inductively utilising the thematic analysis method. Results: The process of returning to social and community participation following non-traumatic spinal cord injury was identified as occurring in three main stages: withdrawal; re-emergence into society; and stability. Each stage consisted of adjustment and adaptation in a number of areas, including: the loss of independence; the experience of being out in public; social networks; participation in productivity roles; and expectations regarding satisfactory social and community participation. Many of the participants had developed or were developing strategies to adapt to the changes experienced in these stages. Conclusion: By using a qualitative approach, this study adds to the understanding of the adjustment process experienced by people following non-traumatic spinal cord injury when they return to living in the community. Although findings parallel those of studies conducted with people with TSCI, there are some differences that may warrant alternative approaches from occupational therapists working with people with NTSCI. Such approaches include assisting people with NTSCI to modify their expectations regarding how they will participate in the community, assisting them to find new meaningful roles, and facilitating the development of new social networks to replace lost ones.",
keywords = "community access and participation, qualitative research, social participation, spinal cord injury",
author = "Linda Barclay and Primrose Lentin and Helen Bourke-Taylor and Rachael McDonald",
year = "2018",
month = "8",
day = "29",
doi = "10.1111/1440-1630.12522",
language = "English",
journal = "Australian Occupational Therapy Journal",
issn = "0045-0766",
publisher = "Wiley-Blackwell",

}

The experiences of social and community participation of people with non-traumatic spinal cord injury. / Barclay, Linda; Lentin, Primrose; Bourke-Taylor, Helen; McDonald, Rachael.

In: Australian Occupational Therapy Journal, 29.08.2018.

Research output: Contribution to journalArticleResearchpeer-review

TY - JOUR

T1 - The experiences of social and community participation of people with non-traumatic spinal cord injury

AU - Barclay, Linda

AU - Lentin, Primrose

AU - Bourke-Taylor, Helen

AU - McDonald, Rachael

PY - 2018/8/29

Y1 - 2018/8/29

N2 - Background/aim: Incidence of non-traumatic spinal cord injury in Australia is increasing, which will result in more occupational therapists being involved in the rehabilitation of this group in the future. The profile of people with non-traumatic spinal cord injury differs from people with traumatically acquired spinal cord injuries, and their long-term health and well-being outcomes are not known. The aim of this study was to explore the experience of returning to social and community participation following non-traumatic spinal cord injury. Methods: Qualitative methods were used for this study. Semi-structured interviews were conducted with seventeen people with non-traumatic spinal cord injury who had returned home. Data were analysed inductively utilising the thematic analysis method. Results: The process of returning to social and community participation following non-traumatic spinal cord injury was identified as occurring in three main stages: withdrawal; re-emergence into society; and stability. Each stage consisted of adjustment and adaptation in a number of areas, including: the loss of independence; the experience of being out in public; social networks; participation in productivity roles; and expectations regarding satisfactory social and community participation. Many of the participants had developed or were developing strategies to adapt to the changes experienced in these stages. Conclusion: By using a qualitative approach, this study adds to the understanding of the adjustment process experienced by people following non-traumatic spinal cord injury when they return to living in the community. Although findings parallel those of studies conducted with people with TSCI, there are some differences that may warrant alternative approaches from occupational therapists working with people with NTSCI. Such approaches include assisting people with NTSCI to modify their expectations regarding how they will participate in the community, assisting them to find new meaningful roles, and facilitating the development of new social networks to replace lost ones.

AB - Background/aim: Incidence of non-traumatic spinal cord injury in Australia is increasing, which will result in more occupational therapists being involved in the rehabilitation of this group in the future. The profile of people with non-traumatic spinal cord injury differs from people with traumatically acquired spinal cord injuries, and their long-term health and well-being outcomes are not known. The aim of this study was to explore the experience of returning to social and community participation following non-traumatic spinal cord injury. Methods: Qualitative methods were used for this study. Semi-structured interviews were conducted with seventeen people with non-traumatic spinal cord injury who had returned home. Data were analysed inductively utilising the thematic analysis method. Results: The process of returning to social and community participation following non-traumatic spinal cord injury was identified as occurring in three main stages: withdrawal; re-emergence into society; and stability. Each stage consisted of adjustment and adaptation in a number of areas, including: the loss of independence; the experience of being out in public; social networks; participation in productivity roles; and expectations regarding satisfactory social and community participation. Many of the participants had developed or were developing strategies to adapt to the changes experienced in these stages. Conclusion: By using a qualitative approach, this study adds to the understanding of the adjustment process experienced by people following non-traumatic spinal cord injury when they return to living in the community. Although findings parallel those of studies conducted with people with TSCI, there are some differences that may warrant alternative approaches from occupational therapists working with people with NTSCI. Such approaches include assisting people with NTSCI to modify their expectations regarding how they will participate in the community, assisting them to find new meaningful roles, and facilitating the development of new social networks to replace lost ones.

KW - community access and participation

KW - qualitative research

KW - social participation

KW - spinal cord injury

UR - http://www.scopus.com/inward/record.url?scp=85052784294&partnerID=8YFLogxK

U2 - 10.1111/1440-1630.12522

DO - 10.1111/1440-1630.12522

M3 - Article

JO - Australian Occupational Therapy Journal

JF - Australian Occupational Therapy Journal

SN - 0045-0766

ER -