Community participation for people living with spinal cord injury in the Tshwane Metropolitan area

Abstract

Background and Purpose: People living with SCI (PLWSCI) have to cope with various challenges when they return home after institutionalized rehabilitation, especially with integrating back into and participating in their communities. To date no study has been conducted in South Africa to empirically measure community integration or to evaluate factors affecting the community integration of PLWSCI. The purpose of the study was to investigate factors influencing the community participation of PLWSCI after rehabilitation. Methodology: A cross-sectional, analytical research design employing both qualitative and quantitative approaches was used. Data collection: Phase one: Participants were identified from the databases of two rehabilitation centers, and the snow balling technique. Data were collected by implementing: the socio-demographic and injury profile (SDIP), the Return to Normal Living Index (RNLI), the Spinal Cord Injury Measure – version II (SCIM II) and the Craig Hospital Inventory of Environmental Factors – short form (CHIEF-SF). Phase two: In-depth face to face interviews were conducted with a purposely selected sample group from participants of phase one of the study to determine how participants perceive their community participation. Data Analysis: Phase one: Data were analyzed using version 17 of the Statistical Package for the Social Sciences (SPSS 17). Descriptive statistics, T- tests, Pearson productmoment correlation coefficients and one way analysis of variance (ANOVA), with Bonferroni adjustments for multiple comparisons, was done to examine demographic characteristics and participants’ community participation. Data from Phase 2 was subjected to data-reducing procedures using qualitative techniques. Results – Phase One One hundred and sixty PLWSCI (134 males and 26 females) from the Tshwane metropolitan area participated in this phase of the study. The participants were predominantly young, male, unemployed and single and their major cause of SCI was road traffic accidents, which accounted for 71% of the injuries. The participants’ satisfaction with their community participation was generally low, only 20% expressed satisfaction with their community participation. Satisfaction with community participation was significantly associated with the participants’ race, level of education, employment, educational qualifications, years of living with SCI, level of SCI, health complications, perceived health status, functional ability and perceived environmental factors such as physical (structural and geographic) barriers and lack of transport. Results – Phase 2 Fifteen PLWSCI participated in interviews. Two themes influencing participation were identified from the interview transcripts: Personal factors (coping skills, rehabilitation experience, future aspirations, personal needs, psycho-emotional issues and meaningful use of time) and Environmental factors (attitudes of others, social support and accessibility issues). Conclusion The results of the two phases revealed that community participation of PLWSCI was mainly related to three major categories of factors: personal factors, disability-related factors and environmental factors. Satisfaction with community participation was greater in participants who had been living with SCI for longer periods, had more years of basic education, were not black Africans, lived in suburbs, and were employed. A positive outlook on life and engagement in creative activities during free time enhanced community participation. Disability-related factors included level of SCI, functional ability and perceived general health influenced satisfaction with community participation. Community participation was greater in participants who experienced fewer environmental barriers. “Attitudes of members of society”, “accessibility of the environment” and “social support” influenced the participants’ satisfaction with community participation. A framework for facilitating community participation of PLWSCI was developed. Strategies to be implemented by various multi-sectoral stakeholders to enhance community participation are proposed.p>