Social participation and personal autonomy of individuals with spinal cord injury

Andrade, Valéria Sousa de; Faleiros, Fabiana; Balestrero, Lais Magro; Romeiro, Viviane; Santos, Claudia Benedita dos

doi:10.1590/0034-7167-2018-0020

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Revista Brasileira de Enfermagem

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REVIEW • Rev. Bras. Enferm. 72 (1) • Jan-Feb 2019 • https://doi.org/10.1590/0034-7167-2018-0020 copy

Social participation and personal autonomy of individuals with spinal cord injury

Participación social y autonomía personal de individuos con lesión medular

Authorship SCIMAGO INSTITUTIONS RANKINGS

ABSTRACT

Objective:

To investigate, based on scientific literature, evidence on social participation and personal autonomy of individuals with spinal cord injury.

Method:

Integrative review of the literature including studies published between January 2006 and September 2016, obtained in the databases PubMed, CINAHL and LILACS. The guiding question was: "What evidence is available in the scientific literature about the social participation and/or personal autonomy of individuals with spinal cord injury?" The data were processed by IRaMuTeQ and analyzed by the Hierarchical Descending Classification, according to the expertise of the researchers.

Results:

Six selected studies discussed social participation, one discussed personal autonomy and two discussed both. 107 text segments were retained and gave rise to five classes.

Conclusion:

There is little specificity regarding the characteristics of social participation and personal autonomy of individuals with spinal cord injury. The existence of barriers forces them to adopt strategies to participate autonomously.

Descriptors:
Community Participation; Social Participation; Personal Autonomy; Spinal Cord Injuries; Rehabilitation

Objectives	Location	Population	Study design	Main findings
Describe how individuals with SCI control their life and find positive meaning and continuity despite their injury, managing social participation and social relationships⁽²⁴24 Ide-Okoche A, Yamazaki Y, Tadaka E, Fujimura K, Kusunaga T. Illness experience of adults with cervical spinal cord injury in Japan: a qualitative investigation. BMC Public Health [Internet]. 2013 [cited 2018 Apr 10];13(69):2-10. Available from: https://doi.org/10.1186/1471-2458-13-69 https://doi.org/10.1186/1471-2458-13-69... ⁾	Japan	29 individuals with SCI (C1 to C6) Mean age: 48.1 years Males and females	Descriptive study	Through self-help groups, participants gave priority to activities aimed at setting new social goals after the injury. Social participation was sought by individuals with SCI to transcend the limitations of disability.
Investigate how individuals with SCI describe their local community⁽²⁵25 Kuipers P, Kendall MB, Amster D, Pershouse K, Schuurs S. Descriptions of community by people with spinal cord injuries: concepts to inform community integration and community rehabilitation. Int J Rehabil Res [Internet]. 2011 [cited 2018 Apr 10];34(2):167-74. Available from: http://dx.doi.org/10.1097/MRR.0b013e3283460e39 http://dx.doi.org/10.1097/MRR.0b013e3283... ⁾	Australia	269 individuals with SCI (C1 to S5) 15-55 years Men and women	Descriptive study	The community was described as a 'place'. The participants highlighted positive points (social and relationship aspects) and negative points (related to physical space and accessibility).
Explore "person perceived participation" in individuals with SCI⁽²⁶26 Van de Velde D, Bracke P, Hove G, Josephsson S, Vanderstraeten G. Perceived participation, experiences from persons with spinal cord injury in their transition period from hospital to home. Int J Rehabil Res [Internet]. 2010 [cited 2018 Apr 10];33(4):346-55. Available from: http://dx.doi.org/10.1097/MRR.0b013e32833cdf2a http://dx.doi.org/10.1097/MRR.0b013e3283... ⁾	Belgian	11 individuals with SCI (T6 to T12) 25-56 anos Men	Descriptive study	Participation was conceptualized as a set of values, including freedom to carry out activities, to act according to the person's identity, to experience personal growth, to experience trust and security, to feel validated, to have a sense of control, to experience a sense of importance and to find equal identities.
To examine the change in life satisfaction over time and potential contributing factors among adults with pediatric-onset spinal SCI⁽²⁷27 Chen Y, Anderson CJ, Vogel LC, Chlan KM, Betz RR, Craig MM. Change in life satisfaction of adults with pediatric-onset spinal cord injury. Arch Phys Med Rehabil [Internet]. 2008 [cited 2018 Apr 10];89(12):2285-92. Available from: https://doi.org/10.1016/j.apmr.2008.06.008 https://doi.org/10.1016/j.apmr.2008.06.0... ⁾	United States	605 individuals with SCI (C1 to T5) 24-37 years Men and womena	Prospective longitudinal study.	After adjusting for potential confounding factors related to SCI, life satisfaction was higher for women and those who were married/living with a partner; were employed/students; did not use illicit drugs; were more independent; had better mental health and better social integration.
To gain an understanding of how women with SCI experienced human encounters in occupations and how these influenced their participation⁽²⁸28 Isaksson G, Josephsson S, Lexell J, Skär L. To regain participation in occupations through human encounters - narratives from women with spinal cord injury. Disabil Rehabil [Internet]. 2007 [cited 2018 Apr 10];29(22):1679-88. Available from: http://dx.doi.org/10.1080/09638280601056061 http://dx.doi.org/10.1080/09638280601056... ⁾	Sweden	13 individuals with SCI 25-61 years Females	Descriptive study	Women struggled with conflicts, supported other persons that were insecure and revaluated their apprehension about persons in their social network. Their experiences with human encounters changed over time and enabled them to regain participation in occupations.
To examine unmet needs related to quality of life and social participation after spinal cord injury across four European countries⁽²⁹29 Kennedy P, Lude P, Taylor N. Quality of life, social participation, appraisals and coping post spinal cord injury: a review of four community samples. Spinal Cord. 2006;44(2):95-105. Available from: doi:10.1038/sj.sc.3101787 https://doi.org/10.1038/sj.sc.3101787... ⁾	United Kingdon	1000 individuals with SCI (C1 to S5) 48-49 years Men and women	Cross-sectional study	Quality of life and social participation are long-term processes in which occupation, sexual activity and pain relief are the least met needs among patients with SCI.
To discuss the concept of autonomy as a precursor for participation in individuals with SCI⁽³⁰30 Van de Velde D, Bracke P, Hove G, Josephsson S, Devisch I, Vanderstraeten G. The illusion and the paradox of being autonomous, experiences from persons with spinal cord injury in their transition period from hospital to home. Disability & Rehabilitation [Internet]. 2011 [cited 2018 Apr 10];34(6):491-502. Available from: http://dx.doi.org/10.3109/09638288.2011.608149 http://dx.doi.org/10.3109/09638288.2011.... ⁾	Belgium	11 individuals with SCI (T6 to T12) 25-56 years Men	Descriptive study	Autonomy and independence can be considered prerequisites for participation.
To determine factors that contribute and predict social participation following discharge of the patient with SCI ⁽³¹31 Craig A, Nicholson PK, Guest R, Tran Y, Middleton J. Adjustment following chronic spinal cord injury: Determining factors that contribute to social participation. Br J Health Psychol [Internet]. 2015 [cited 2018 Apr 10];20(4):807-23. Available from: https://doi.org/10.1111/bjhp.12143 https://doi.org/10.1111/bjhp.12143... ⁾	Australia	71 individuals with SCI (C1 to S5) Mean: 42.6 years Men and women	Prospective longitudinal study	Factors that predicted social participation and autonomy: younger age, having a higher cognitive capacity. Factors that did not predict participation: low perceived self-efficacy, pain and alcohol use.
To understand how adults with SCI participate in their daily life and within their communities, to promote opportunity for participation⁽³²32 Ripat JD, Woodgate RL. Self-perceived participation among adults with spinal cord injury: a grounded theory study. Spinal Cord. 2012;50(12):908-14. doi:10.1038/sc.2012.77 https://doi.org/10.1038/sc.2012.77... ⁾	Canada	19 individuals with SCI (C1 to C8) Age: ≥ 20 years Men	Descriptive study	The participants live in a changed world, one that is perceived differently after SCI, and use various strategies to interact within their environment and to participate

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[1] Corresponding Author:Valéria Sousa de Andrade E-mail: valeria-to@hotmail.com