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Perceived Barriers and Facilitators to Community Reintegration after Spinal Cord Injury: A Critical Review of the Literature
Abstract
A spinal cord injury (SCI) significantly affects an individual's return to and participation in community living. The goal of SCI rehabilitation is to enable an individual to reintegrate into community life; however, limited knowledge exists regarding the variables that facilitate or impede community reintegration. Among existing studies, few have been critically appraised to evaluate the quality of evidence. The review objectives are 3-fold: (1) to critically appraise the recently published literature regarding community integration for people with spinal cord injury; (2) to summarize the best evidence with a goal of translating knowledge into clinical practice; and (3) to provide recommendations for how the field can best be advanced in the most scientifically rigorous manner. Of the articles reviewed, 31 met specific inclusion criteria; 8 were of high methodological quality and 23 were of moderate to low methodological quality. Most of the reviewed articles were classified as level III (moderate evidence). Barriers to community reintegration included pain, inaccessible environments, financial constraints, and poor health. Facilitators included social support, internal locus of control, employment, and accessible transportation and housing. This article highlights the need for further well-designed studies to contribute to the understanding of community reintegration and facilitate the translation of knowledge to inform best practice guidelines in SCI rehabilitation.
... These findings align with Durojaiye et al. [16] in individuals with SCI, increasing the level of knowledge and awareness in order to empower family members is considered an important care strategy [36] who highlighted the physical environment as a major barrier to mobility and daily living activities for individuals with disabilities. Gargaro's study [37] further supports the significant impact of environmental factors on rehabilitation outcomes for individuals with spinal cord injuries. The World Health Organization's global disability action plan emphasizes the importance of removing environmental barriers to improve health outcomes for people with disabilities [38]. ...
Objectives
Rehabilitation services are crucial for improving the quality of life and overall health of individuals with spinal cord injuries (SCIs). However, access to adequate rehabilitation remains limited in many regions, including Iran. This study aims to explore the barriers faced by individuals with SCIs in accessing appropriate rehabilitation services within Golestan province, northern of Iran.
Methods
This study employed a qualitative approach to explore the barriers experienced by individuals with SCIs in accessing rehabilitation services. Fourteen participants were purposefully selected from the Golestan province (north of Iran) until data saturation was reached. Semi-structured interviews were conducted during the summer and fall of 2023, recorded, transcribed, and subjected to rigorous thematic analysis.
Results
The study identified three primary categories of barriers: 1) Personal limiting factors, such as insufficient health literacy and inadequate home adaptations; 2) provider-related, including insufficient expertise, non-professional service delivery, inappropriate facility adaptations, limited service accessibility, and inadequate service provision; and 3) socio-supportive, encompassing companionship needs, financial constraints, insurance limitations, and bureaucratic hurdles.
Conclusion
The findings of this study highlight a complex interplay of patient, provider, and societal factors that impede access to rehabilitation services for individuals with spinal cord injuries in Golestan province. While provider-related challenges are prevalent, the significance of individual and socio-supportive factors cannot be overstated. To optimize rehabilitation outcomes, a holistic approach is essential, addressing not only physical impairments but also psychosocial and environmental barriers.
The findings of this study underscore the complex interplay of patient, provider, and societal factors that influence access to rehabilitation services for individuals with spinal cord injuries. While provider-related challenges, such as insufficient expertise and limited service accessibility, are significant, the study emphasizes the crucial role of individual and socio-supportive factors in facilitating successful rehabilitation. Addressing these multifaceted barriers requires a holistic approach that considers not only physical impairments but also psychosocial and environmental needs.
... Their differing roles shape distinct perspectives on the meaning and measurement of successful CR. Individuals with TSCI emphasise accessible environments, transportation and technology for rehabilitation and CR (Gargaro, Warren & Boschen 2013). Family and caregivers provide emotional support, assist with tasks and advocate needs and rights of persons with TSCI (Hammell 2004). ...
Background: Traumatic spinal cord injury (TSCI) profoundly impacts individuals, hindering their return to previous roles. Community reintegration (CR) is crucial and requires holistic engagement. Stakeholders’ perspectives shape outcomes and are vital in regions like South Africa with limited rehabilitation infrastructure. Understanding their viewpoints is crucial.Aim: To explore multiple stakeholders’ perspectives on factors influencing CR after TSCI in South Africa.Setting: The research was conducted in the Cape Metropolitan Area, within South Africa’s Western Cape province, home to around 3.7 million residents.Methods: A qualitative exploratory descriptive design was used. Semi-structured face-to-face interviews were conducted and audio-recorded. The recordings were transcribed verbatim, accuracy-checked, and uploaded to Atlas.ti.® 23 software for data coding and analysis. Thematic analysis was utilised.Results: Six main themes and fifteen categories were identified within the international classification of functioning disability and health (ICF) framework’s contextual factors domain, highlighting the impact of environmental and personal factors on CR. Stakeholders emphasised the need for accessible environments, technology, support networks, attitudinal changes, improved services and personal resilience to facilitate CR.Conclusion: Our findings emphasise the need for investments in accessibility, inclusivity, assistive technologies, awareness campaigns and policy reforms to support successful reintegration and foster resilient communities for individuals with TSCI.Contribution: This study illuminates key factors influencing CR and underscores the importance of comprehensive interventions, contributing to the understanding of the multifaceted challenges of CR after TSCI in South Africa.
... Each selected study's methodological quality was critically appraised using the McMaster University occupational therapy evidence-based-practice research group critical review form and guidelines for quantitative and qualitative studies by the first and second authors. The total score for a quantitative study is 15, and 24 for a qualitative study, which is applied under the subheading study purpose, literature, study design, sampling, data collection, data analysis, trustworthiness, conclusion, and implications (27,28). The higher the score indicates the better quality of the paper. ...
Introduction: This systematic review aimed to investigate the level of participation, obstacles, and facilitator factors that influence activities of daily living among persons with spinal cord injury (SCI). Methods: A comprehensive search was conducted in four online databases, namely Google Scholar, PubMed, OT Seeker, and Cochrane Library covering the ten-years period from January 2012 to December 2022. Inclusion criteria encompassed original published studies in English focusing on daily activities, work, participation, obstacles, and facilitators in persons with SCI. Non-peer review sources (e.g., abstracts, grey literature, preprints), and studies unrelated to occupational therapy were excluded. The selected studies were assessed for quality using McMaster University Occupational Therapy Evidence-Based Practice critical review form. Results: Out of the 678 articles identified, ten studies were included after the screening, exploring participation in daily living activities, employment, return to work, leisure activities, family tasks, and community mobility among persons with SCI. Obstacles and facilitators influencing participation in activities of daily living were classified using the International Classification of Functioning, Disability, and Health (ICF) framework. This review highlighted that long-term participation is challenging for persons with SCI, affected by obstacles such as body functions, pain, low self-esteem, and environmental and social factors. Conclusion: The findings underscore the importance of adopting a multidisciplinary rehabilitation approach to enhance participation in daily activities for persons with SCI. Occupational therapy plays a significant role in improving participation levels among persons with SCI.
... Conceptualizing and measuring participation are important steps toward defining clinical outcomes for people with spinal cord injury (SCI), however developing an understanding of what influences participation is likely to contribute directly to enabling them to attain these outcomes. Recognizing the influences on participation in life after SCI can also inform rehabilitation theory and practice (10). ...
Background
Greater understanding of the influences on participation in life after spinal cord injury (SCI) can inform rehabilitation theory and practice. Careful qualitative inquiry can reveal subjective meanings associated with the relevant experiences, strategies, and perceptions of those with lived experience of SCI. A search of literature, followed by a thematic synthesis of qualitative studies, was undertaken to bring together these insights in a meaningful way.Methods
The research question guiding the literature review and synthesis was, What do people with SCI perceive to be the influences on their participation in life? Three critical databases were searched for qualitative studies examining influences on participation in life after SCI. Peer-reviewed studies published after 2006, involving adults with SCI living in countries with advanced economies, were included. Data were extracted from 24 articles and subjected to three-level thematic synthesis—the coding of primary data from the studies, the development of descriptive themes based on an organization of those codes, and the generation of analytical themes.ResultsThe synthesis yielded five analytical themes, supported by 17 descriptive themes. The analytical themes were (1) external contextual influences, (2) personal physical context, (3) personal psychological context, (4) potential moderators of participation outcomes, and (5) temporal dimensions of participating in life after SCI.InterpretationThese themes highlight the complex interactions that shape participation from the perspective of people with SCI. Closer examination of the potential moderators may provide insights into effective rehabilitation interventions.Conclusions
Synthesis of qualitative inquiry provides valuable insights into the perceptions of influences on participation in life from the point of view of people with SCI. The findings of this synthesis are instructive for rehabilitation theory and practice. It can complement what we learn from using the ICF to understand participation.
... These findings suggest that health care and rehabilitation organizations that serve individuals with SCI/D, including both outpatients and long-term care residents, may play a critical role in increasing opportunities for participation and cultivating peer-level social support, which has been established as a facilitator for participation in the SCI/D population. 8,34,35 Consistent with prior photovoice studies, participants in this study were enabled to drive the data collection process, photographing aspects of participation that were most meaningful to them and leading the subsequent interview discussion by interpreting their own photographs and explaining their significance to participation. [15][16][17] These unique insights can be directly translated into intervention efforts to enhance participation after SCI/D in a way that reflects individual needs. ...
Participation is a significant rehabilitation outcome for individuals with spinal cord injury and/or disorder (SCI/D), yet few qualitative studies have described the social aspect of disability and community participation. We used the photovoice methodology to explore perceptions and experiences related to participation among Veterans with SCI/D. We recruited a convenience sample of individuals with SCI/D at the Hines Veterans Affairs (VA) SCI/D Unit. Participants were asked to take photographs exemplifying their experiences and activities regarding participation. Within four weeks, participants returned their photographs and completed semi-structured interviews to discuss their photographs. Interview transcripts were analyzed using an inductive coding approach to identify emerging themes. Of the 18 Veterans with SCI/D who completed the initial orientation session, 9 (50%) completed the photography phase and follow-up interviews. A majority of participants were White (67%) and the mean age was 64 years. The mean duration of injury was 21.8 years, and 75% of participants were paraplegic. Most participants (78%) were community-dwelling. All participants discussed participation as a highly relevant issue in their lives. A majority of participants (67%) described sports as an example of participation. Over half (56%) emphasized the positive effects of participation (i.e., feelings of enjoyment/accomplishment) in sports as well as engaging in faith-based activities, being outdoors, and managing business- or household-related responsibilities. Barriers to participation were mobility impairments, lack of transportation and cost. Findings from this study can be used to address environmental changes or other accommodations that influence participation, both inside and outside the health care setting.
... The wellness center in this study offered unique services designed specifically for individuals with SCI, which allowed participants to continue to improve their overall health and well-being. Barriers, such as pain, inaccessible environments, financial constraints, and poor health, exist to community reintegration after SCI (Gargaro, Warren, & Boschen, 2013). Occupational therapists are in a position to promote occupational justice by advocating for an equitable distribution of resources so all the members of the community may engage in occupations that promote health, wellness, and civic engagement. ...
Little is known about how participating in a wellness program influences the well-being of individuals with spinal cord injury (SCI). The purpose of this study is to explore how men with SCI describe their experiences and meaning of participating in a wellness center program, how they perceived these experiences as influencing their well-being, and how these experiences relate to co-occupations and occupational spin-off concepts. Investigators employed a descriptive qualitative design. Four adult males with an SCI participated in the study. Data collection methods included individual semi-structured interviews and observations. Participation in a wellness program positively influenced the physical, mental, and social well-being of participants. Findings expand our understanding of the value of social environment, social participation, co-occupations, and occupational spin-off. It is essential that occupational therapists promote occupational justice by advocating for clients so they can participate in wellness occupations in the community.
... 19 Notably, these studies have operationalised participation in various ways, highlighting the multidimensionality of this concept. 20 In summary, the ICF can be used as a reference to define the psychosocial issues encountered by individuals who report pain following an acquired SCI. This paper will quantitatively review the available data to map the onset and maintenance of psychosocial difficulties in SCI pain, as predicted by the ICF. ...
Study design: Meta-analysis.
Objectives: Although the association between modifiable psychosocial factors and spinal cord injury (SCI) pain has been identified, the full range of psychological and social difficulties for those who experience acute and/or persistent pain remains unclear. This meta-analysis consolidates the available evidence, using the International Classification of Functioning, Disability and Health (ICF) as a reference framework.
Methods: Nineteen studies that examined persistent neuropathic, nociceptive or mixed pain subtypes in adults with a SCI (newly acquired and chronic; Nparticipants=2934) were identified from electronic database searches. Standardised mean differences between SCI pain and no-pain groups on self-reported psychosocial outcomes were calculated, along with 95% confidence intervals, fail-safe Ns and heterogeneity statistics.
Results: Twenty individual outcomes were grouped into nine ICF-related categories. Emotional functions were the most frequent (100%) psychosocial outcomes assessed, with pain contributing to heightened stress (d=− 0.85), depression (d=− 2.49) anxiety (d range=− 0.85 to − 1.45), poor self-efficacy (d=− 0.77), lowered wellbeing (d range=− 0.67 to − 1.02) and decreased use of
adaptive coping, such as illness acceptance (d=− 0.85). Activity limitations and participation restriction were examined by seven studies (43%), although these findings were largely characterised by single studies.
Conclusions: Multicomponent treatments that target mood disturbance and foster community connections are important in SCI pain management. However, to improve the comparability of future studies, SCI pain research must adopt definitions of pain consistent with the International Spinal Cord Injury Pain Classification along with validated outcomes that map onto the ICF framework.
Full-text read only version available here: http://rdcu.be/pMjF
Introduction: Sport’s ability to challenge social paradigm and boost self-esteem has made it an important tool to empower people in disability world. An elite athlete is defined who has reached the highest level of performance in a particular sport.
Material and Methods: 19 elite athletes, eleven males, eight females, were recruited. A semi structured interview guide was employed with the goal of gaining specific information and making better comparison.
Results: Through the evaluation of the questionnaires four themes emerged: challenge, rebirth, empowerment and icon.
Conclusion: According to literature this paper indicates that sports can have significant physical and psychosocial health benefits for people with disability. Sports provide a great social environment and can be a tool to overcome social barriers.
Background: The bio-psychosocial model for comprehensive understanding of community reintegration among individuals with spinal cord injury (SCI) varies across communities. Yet, information about community reintegration in Nigeria is not available. Objective: To investigate the association between community reintegration and clinical and psychosocial attributes among Nigerians with SCI. Methods: Fifty individuals (31 females; 19 males) with SCI aged 38.6 ± 11.1 years participated in this longitudinal survey. Pain, functional ability, and severity of injury were assessed at discharge and at 1, 2, and 3 months post-discharge from inpatient care using the Visual Analogue Scale (VAS), FIM®, and American Spinal Injury Association Impairment Scale (AIS), respectively. Self-esteem (SE), social support (SS), and depression were also assessed using the Self-Esteem Questionnaire, Social Support Questionnaire, and Beck Depression Inventory, respectively. CR was assessed at 1, 2, and 3 months post-discharge using the Reintegration to Normal Living Index (RNLI). Data were analyzed using Spearman's rho correlation and Friedman test. Results: The psychosocial and clinical attributes were significantly different from baseline and across the 3 months post-discharge (p < .0001), except for SS. CR significantly correlated with level of injury, function ability, SE, and depression across the 3 months post-discharge (p < .01). CR was significantly correlated with SS only at 1 month post-discharge (p = .027). Conclusion: Individuals with SCI had significant improvement in clinical and psychosocial attributes from discharge to 3 months post-discharge. Improvements in these variables were associated with better reintegration into the community.
People with spinal cord injury (SCI) have greater health challenges than the general population. Health implications can arise from direct spinal nerve damage, secondary conditions, and the increased likelihood of a sedentary lifestyle. Health education is an important aspect of SCI rehabilitation. Peer education is used in both general health education campaigns and those aimed at people with defined illnesses and disabilities. Peers have a unique understanding of the target population, and are a valued contributor to SCI rehabilitation. This scoping review explored the existing evidence about the various types and content of health education programs involving peers, aimed at adults with SCI. The eight studies identified are described using three themes; timing and focus; role of peer educators; and outcomes. Half of these studies included peer education as one component of a broader program, but despite differing approaches all reported positive participant outcomes. Peer education appears to be a promising approach to assist people with SCI to learn about and manage their health, and positively influence their self-efficacy. Further research that isolates the role of the peer educators in programs would be beneficial to determine the unique benefits of this form of health education.
Aims
Despite the fact that community reintegration is rapidly becoming a significant area of clinical, policy and research concern, research into reintegration after spinal cord injury (SCI) within the UK is sparse. This small-scale pilot study aimed to explore the experiences of reintegration for people living with SCI in the UK, and how rehabilitation was perceived to have helped or hindered this reintegration.
Methods
Seven participants between 5–12 years, post-SCI, and who lived in the community were recruited from local sport and activity groups. All participants took part in a single semi-structured interview. Interviews were transcribed verbatim and sent to each respondent for validation. Transcripts were then analysed.
Findings
Themes that emerged regarding the individuals' experiences of reintegration and rehabilitation were: restoring independence, regaining life roles, understanding and redefining, individuals' and family and friends' attitudes, professionals' attitude and approach, dissatisfaction and unmet needs, transition to home, and lack of community rehabilitation and follow-up services.
Conclusions
Although only a small-scale study, the findings suggest potential areas for improving SCI rehabilitation. They also support further research that will establish whether current rehabilitation services are successful in meeting the needs of those with SCI.
The health care environment of the past quarter century went through numerous evolutionary processes that affected how occupational therapy services were provided. The last iterations of these processes included requests for the evidence that supported what we were doing. This year's Eleanor Clarke Slagle Lecture (a) examines the strength of the evidence associated with occupational therapy interventions-what we do and how we do it-(b) raises dilemmas we face with our ethical principles when some of our practices are based an limited evidence, and (c) proposes a framework of continued competency to advance the evidence base of occupational therapy practice in the new millennium.
While recent studies have demonstrated the significance of leisure in the initial phases of spinal cord injury (SCI) rehabilitation, the impact of leisure experience on adjustment and the dynamics of that influence have yet to be adequately clarified. Development of skills to effectively manage leisure becomes critical in the community reintegration process, especially for those who are at risk for poor social and psychological adjustment after injury. Although leisure activities may contribute to well-being among individuals with SCI, the lack of understanding of the dynamics of that influence offers little direction for selection of activity alternatives and design of leisure interventions. This study attempted to answer the following research questions: (1) Does leisure engagement influence the adjustment of individuals with SCI? (2) If leisure engagement does influence adjustment, what influence do variations in leisure activity have on the adjustment of individuals with SCI? (3) Does social support mediate the influence of leisure on adjustment of individuals with SCI? The leisure and SCI adjustment model was constructed to provide one possible explanation of the influence of leisure on the adjustment of individuals with SCI. The model proposed that: (a) leisure engagement has a direct influence on the adjustment of individuals with SCI and (b) leisure engagement has an indirect influence on adjustment to SCI through the promotion of social support. Results from structural equation modeling confirmed that the leisure and SCI adjustment model was an "acceptable" fit to data but left a sufficiently large amount of unexplained variance to suggest the need for further examination of alternative models of SCI adjustment. The use of multiple regression and bivariate correlations suggested that diversity, frequency, and intensity of leisure engagement were associated with the adjustment of individuals with SCI.
This large cross-sectional survey study compared the community integration and quality of life of support providers (n = 100) with those of individuals with a spinal cord injury (n = 100) as well as those of a non-SCI, non-support-provider sample from the general population (n = 102). Variables quantitatively examined were locus of control, environmental facilitators and barriers, productivity status, community integration, and quality of life. ANOVA and regression analysis confirmed the research hypotheses that support providers would have higher scores on the study variables than persons with SCI but would have lower scores than the comparative sample, demonstrating the impact of this role on the individual.
This commentary explores community participation in New Zealand (NZ), as described by qualitative data from NZ's contribution to the Development of ICF Core Sets for SCI multicenter study. Three entirely local influences are also discussed: the Independent Living philosophy as championed by the late Professor Alan Clarke; NZ's legislated policy of biculturalism; and the Accident Compensation Corporation (ACC), NZ's publicly funded, no-fault accident-related health scheme.
Social-recreational activities of 62 individuals with spinal cord injury (SCI) living in the community and 219 people with no disability were compared. The relatively small between-group differences that were found in the extent of such activity became statistically insignificant when the groups were "matched" through the use of an analysis of covariance. Age, ethnicity, and one environmental barrier - transportation - comprise the significant predictors of social-recreational activity for the SCI group, with 49% of the variance in activity accounted for.
There is a need to better understand the influence of environment in the lives of persons with spinal cord injury (SCI) so that interventions can be proposed to enhance life satisfaction. The purpose of the study was to identify the major perceived environmental facilitators and obstacles to social participation. Data collected with the Measure of Quality of Environment suggest that most primary environmental facilitators are social, whereas the main obstacles are physical. Moreover, the perceived influence of the environment varies among individuals according to their personal characteristics (age, gender, level of injury), which illustrates the dynamics of the interactive process between personal (intrinsic) and environmental (extrinsic) factors.
The purpose of this study was to explore the relationship of gender to environmental barriers and societal participation/community integration. The Craig Handicap Assessment and Reporting Technique (CHART) was used to assess community integration, and the Craig Hospital Inventory of Environmental Factors was used to assess barriers. A sample of 2,048 patients participating in the Model Spinal Cord Injury Care System was studied. Gender was found to be associated with environmental barriers; women experienced more across all domains. Gender differences were found for the Occupation scale of the CHART but not for its other scales.
In this study of 78 people living in the community 1 to 7 years after spinal cord injury, community integration and reported coping strategies were investigated for their association with life satisfaction. Community integration was measured in terms of objective and subjective handicap in social roles. Objective handicap, defined by the Craig Handicap Assessment and Reporting Technique (CHART), and subjective handicap, defined by the Perceived Handicap Questionnaire (PHQ), were hypothesized to show an inverse relationship with life satisfaction, as measured by the Life Satisfaction Index-Z (LSI-Z). It was hypothesized that each measure of handicap would provide unique explanation of variability in life satisfaction. Furthermore, it was hypothesized that differences in participants' use of coping strategies, measured via an abbreviated version of the Ways of Coping Questionnaire (abbrWOC), would be associated with differences in their reported handicap and life satisfaction. Participants' use of coping strategies was hyothesized to provide a unique explanation of their life satisfaction, even when considered together with the two measures of handicap. The study's hypotheses were partially supported. Objective and subjective measures of handicap were correlated with each and with life satisfaction. However, only perceived handicap provided a unique explanation of life satisfaction in a multivariate context. Two of the eight assessed coping strategies were associated with life satisfaction, but only one, escape-avoidance coping, remained significant when assessed in conjunction with handicap. These results are discussed in relation to a contemporary theory regarding the effects of individual characteristics and handicap on quality of life and directions for future study are discussed.
This study investigated how individuals in the community 1 to 5 years after spinal cord injury characterized their occupational and social participation, life satisfaction, and aspects of their occupational therapy that influenced their participation. Semi-structured, open-ended interviews were conducted with 11 individuals referred by occupational therapists who specialize in spinal cord injury rehabilitation and/or are regarded as practicing from an occupation-based perspective. Narrative analysis of data revealed that the participants went through an adaptive process, using many strategies to adjust their attitudes about disability, manage identity, participate in the community, and belong socially. Several approaches were used by therapists to promote the individuals' participation in occupations and social life.
Traumatic brain injury is a leading cause of death and disability in both Canada and the United States. Disorders of sleep and wakefulness are among the most commonly reported sequelae postinjury, across all levels of severity. Despite this, sleep and wakefulness are neither routinely, nor systematically, assessed and are only recently beginning to receive more clinical and scientific attention. Objectives: This review aims to systematically appraise the literature regarding sleep and wake disorders associated with traumatic brain injury according to the following domains: epidemiology, pathophysiology, neuropsychological implications, and intervention; to summarize the best evidence with a goal of knowledge translation to clinical practice; and to provide recommendations as to how the field can best be advanced in the most scientifically rigorous manner. Methods: Systematic review and rating of the quality of evidence. Results: Forty-three articles were reviewed for levels and quality of evidence. Fifty-six percent of the literature was classified as Level III, and 24 percent were Level IVA. Overall, 89 percent of the studies were rated as moderate quality. A separate summary was provided for the pediatric literature. Conclusions: A comprehensive review of the emerging literature revealed wide ranges in estimates for incidence and prevalence of sleep disorders following TBI depending on characteristics of patients, measures used, and length of follow-up. Few treatments have been found to be effective, and as such more research is recommended. Our overview of the pediatric literature shows that this is an important issue for survivors of all ages. Overall, further work is needed to fully understand this complex disorder and to identify appropriate and timely interventions.
To examine the association of health, community integration, and economic status with subsequent mortality and life expectancy among persons with spinal cord injury.
Cohort study.
Model Spinal Cord Injury Systems (MSCIS) hospitals.
A total of 5947 persons injured since 1973 who were enrolled in the National Spinal Cord Injury Database and who were still alive and received an annual evaluation from November 1995 through March 2002.
Not applicable.
Mortality was determined by routine follow-up supplemented by information from the Social Security Death Index. A logistic regression model based on the full set of predictor variables was developed to estimate the chance of dying in any given year.
After adjusting for demographic characteristics and injury severity, health status indicators, measures of community integration, and economic status indicators all had relatively small but statistically significant effects (20%-70% increases) on the likelihood of dying during the next year. Inclusion of these factors may result in higher life expectancy estimates under highly favorable conditions.
Whereas previous reports of the MSCIS data have identified the life expectancies associated with a particular set of demographic (eg, age, gender) and injury-related characteristics (level and completeness of injury; ventilator dependence), the current analysis suggests that consideration of health, economic, and psychosocial factors may make computations of life expectancy more accurate.
The ultimate goal of spinal cord injury (SCI) rehabilitation is often described as reintegration into the community, which includes a person's full inclusion and participation in the physical and social environment. The International Classification of Functioning and Disability (ICF) is the international framework that explains the nature and role of "participation." Case studies have been used to illustrate the utility of the ICF to identify and evaluate problems and needs in participation during inpatient rehabilitation programs. It could be shown that the ICF allows for systematic data collection and, in particular, allows clinicians to more fully describe the extent to which a spinal cord-injured person's levels of activity and participation may be affected. In particular, differences between levels of capacity and performance could be shown to be affected by the impact of environmental factors.
Examined life satisfaction among 91 adults with spinal cord injury (SCI) through structured personal interviews that used the Center for Epidemiological Studies Depression Scale, Rosenberg's Self-Esteem Scale, the Life 3 Measure, and a number of items related to satisfaction with various life domains. Results suggest leisure satisfaction was the most significant predictor of life satisfaction, explaining 43% of the variance in the life satisfaction scores; an additional 16% of the variance was explained by self-esteem and health satisfaction. Findings highlight the role of leisure satisfaction in enhancing life satisfaction among individuals with SCI, given the high unemployment rate in this population. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Objective: To apply the World Health Organization model of functioning to a study of perceived choice over life activities and barriers to engaging in life activities among persons with spinal cord injury. Participants and Setting: This large community-dwelling sample included 255 participants from 2 urban sites and 1 rural site. Measure: Items from the Participation of People With Mobility Limitations Survey were used. Results: Approximately half of the participants reported little or no perceived choice with employment, and the majority reported low levels of satisfaction with choice with employment. Access to employment was limited by physical barriers (48%) and transportation (46%). Physical impairment, pain, and fatigue were also barriers. Conclusions: Improvements of workplace and transportation accessibility, increased vocational supports, and interventions to decrease pain and fatigue are needed to ensure participation for persons with spinal cord injury. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
The importance of activities and community participation for persons with spinal cord injury (SCI) has been recognized for decades and yet theoretical and empirical advances have been limited. This report summarizes the recommendations for researchers on the topic of measuring activity and participation among persons with SCI formulated by the Spinal Cord Injury workgroup at the State-of-the-Art Conference on Outcome Measures in Rehabilitation held in January 2010. Activity and participation were defined as independent constructs ideally measured in reference to personal values and environmental influences. Measures of activity, participation, and factors influencing activity and participation are reviewed and critiqued. Gaps in available measures are described, measures in development are discussed, and suggestions for future research are made.
Observational cohort study.
To evaluate ongoing health and community reintegration of patients with spinal cord injury (SCI) after discharge from inpatient rehabilitation in Nepal.
Nepal.
This study follows a cohort of 37 patients with SCI in Nepal, 1-2 years after discharge from inpatient rehabilitation in 2007. Participants were visited at home and data were obtained through semi-structured interviews that evaluated health, independence in daily living (Modified Barthel Index), community participation (Participation Scale) and barriers due to socioeconomic issues, housing, accessibility, and availability and use of mobility aids.
One-quarter of the cohort had died (35% of wheelchair users). Secondary health concerns, such as pressure ulcers and urinary tract infections, were common in the 24 patients interviewed, and eight had been rehospitalized to treat them. Inappropriate wheelchairs, inadequate housing and rugged terrain restricted accessibility. 80% of wheelchair users could not enter their homes independently and 74% of those who were using mobility aids could not access the community independently because of the physical terrain. Of all those who were interviewed, half had no accessible toilet, access to a water source or road access to their home. Community participation was a challenge for most using mobility devices, and less than half earned any income.
This study identifies important areas of focus for rehabilitation centres in less-resourced contexts like Nepal to help with reintegration after discharge: vocational training during or after rehabilitation; accessible housing; wheelchairs appropriate to the terrain and the need for strong community-based rehabilitation.
Health-related quality of life (HRQL) was evaluated in three subgroups of spinal cord injury (SCI) patients: (1) persons who had sustained a pediatric SCI (mean time from injury 20 years, age at injury 11.3 years, n = 36), (2) newly injured patients at the beginning of acute rehabilitation (mean age 35.3 years, n = 31), and (3) patients with a chronic SCI (mean time from injury 4.8 years, mean age at injury 35.2 years, n = 34). All the patients were clinically examined and structurally interviewed with a list of questions dealing with details of anamnestic information about injury, its treatment, possible complications and persons past and present psycho-social condition. HRQL was assessed by a generic fifteen-dimensional self-administered instrument (15D). The relative importance of the 15D dimensions and an overall judgement of health status were measured by a 0-100 visual analogue scale. Average importance weights of the dimensions of moving and working differed significantly in the three subgroups. Patients with pediatric SCI assigned the lowest importance for moving. The newly injured patients highly valued working capability. The HRQL scores of the patients who had sustained their injury in childhood were significantly higher than those of the newly injured patients or chronic patients. The tetraplegic patients estimated their HRQL significantly lower than patients with incomplete paraplegia. Of the three subgroups studied, those with pediatric SCI were well adjusted on the basis of anamnestic information and scored high on HRQL when compared with the other two subgroups. Patients injured in adulthood rated their overall HRQL lower and were often unable to return to work. Patients injured in childhood expressed better performance in physical functions than patients who had sustained their injury in adulthood. The subgroups did not differ in psychological functions.
Objective: It is suggested that participation should be achieved at the end of the rehabilitation process. However, there is a lack of consensus on the definition, the conceptualisation and the measurement of participation. This study aims to add to the existing body of knowledge of participation by exploring the ‘person perceived participation’ in individuals with Spinal Cord Injury.
Design: Based on the ‘grounded theory’ approach; in-depth, semi structured interviews were conducted with 11 SCI patients from a rehabilitation cohort in their transition period from hospital to home, in order to gain an insider perspective on the concept of participation.
Results: Results identified three different categories of participation; social participation, occupational participation and socio-occupational participation. The participants conceptualize participation as a set of values, including experiencing free choice to perform activities, performing according to the person’s identity, experiencing personal growth, belonging by experiencing trust and security, feeling validated, having a sense of control, experiencing a sense of importance and finding equal identities.
Conclusion: From a client perspective; participation is as a complex, multidimensional construct and can be considered as a dyad between the individual’s social interactions and his specific activities performed. Participation was not experienced by the SCI patients as an objective way of performing activities within a societal context or as frequencies of activities performed, but rather as an internal process of negotiation that appeared to be based on balancing personal and societal values.
To explore community reintegration in rehabilitated South Indian persons with spinal cord injury (SCI) and to compare the level of community reintegration based on demographic variables.
Survey.
Rehabilitation center of a tertiary care university teaching hospital.
Community-dwelling persons with SCI (N=104).
Not applicable.
Craig Handicap Assessment and Reporting Technique (CHART).
The mean scores for each CHART domain were physical independence 98+/-5, social Integration 96+/-11, cognitive independence 92+/-17, occupation 70+/-34, mobility 65+/-18, and economic self sufficiency 53+/-40. Demographic variables showed no statistically significant difference with any of the CHART domains except for age and mobility, level of education, and social integration.
Persons with SCI in rural South India who have completed comprehensive, mostly self-financed, rehabilitation with an emphasis on achieving functional ambulation, family support, and self-employment and who attend a regular annual follow-up show a high level of community reintegration in physical independence, social integration, and cognitive independence. CHART scores in the domains of occupation, mobility, and economic self-sufficiency showed lower levels of community reintegration.
Growing evidence suggests that acquired brain injury (ABI) rehabilitation and research should be guided by a philosophy that focuses on: restoration, compensation, function and participation in all aspects of daily life. Such a broad, more pluralistic approach influences ABI rehabilitation research at a number of levels, including both the generation of evidence, and in searching for, critiquing and applying the evidence to practice. The objective of evidence based medicine/practice (EBM/EBP) is to apply and integrate clinical expertise with evidence gained through systematic research and scientific inquiry to medical/clinical practice. While there is abundant literature debating the practical and sociological implications of EBP, there has been limited examination of EBP within the inherently complex nature of ABI rehabilitation and rehabilitation research. This paper provides a framework for clinical decision making regarding evidence based practice in the context of ABI rehab including: 1. A discussion of the purpose of evidence based practice, 2. Levels of evidence relevant to ABI rehabilitation research, and 3. A rationale for incorporating a broader, more pluralistic concept of evidence or "person-centred EBP". We conclude with a series of key questions for the evaluation and application of systematic reviews of the evidence in the context of ABI rehabilitation.
Cross sectional follow-sup survey.
To ascertain the factors influencing community reintegration, of individuals with spinal cord injury living in rural environment, and to suggest measures to enhance community participation.
Bangalore, Karnataka, India.
Thirty-five individuals who were admitted under Physical Medicine and Rehabilitation Department of St Johns Medical College Hospital and rehabilitated to their functional level based on their level of injury; individuals living in rural environment were included in the study. The study was conducted by means of a standardized questionnaire and environmental and home assessments carried out during follow-up home visits after 12 months of discharge from the hospital. The main outcome measures were Craig Handicap Assessment and Reporting Technique (CHART) and Craig Hospital Inventory of Environmental Factors (CHIEF). The home visits and assessments were carried out by a rehabilitation team, which consisted of community-based rehabilitation worker, medico-social worker, physiotherapist and occupational therapist, and headed by a physiatrist.
The findings of the study indicate a general decline in community re integration in terms of physical independence, mobility, occupation and social integration. Mobility issues were the greatest perceived barrier and economic issues also significantly influenced the community participation.
Our study showed significant decline in community reintegration in subjects living in rural south India. Architectural and environmental barriers, poor socio-economic status and comorbidities significantly affected the level of community participation.
Multi-centre, single cohort.
To assess the relationship between cognitive appraisals in a spinal cord-injured population living in the community, and examine how these factors affect social participation, life satisfaction and functional outcomes.
The National Spinal Injuries Centre, Stoke Mandeville, UK; Princess Royal Spinal Injuries Centre, Sheffield UK; Midlands Centre for Spinal Injuries, Oswestry, UK.
Participants (n=81) sustaining injury aged 18 or above were recruited from one of three spinal cord injuries units 3-18 months after discharge. Postal packs containing questionnaires, consent forms and information were distributed and a 2-week reminder sent.
Participation was found to be strongly related to life satisfaction, negative appraisals of disability were found to explain 12.9% of the variance in total participation scores. The variance in scores on Life Satisfaction Questionnaires was explained by appraisals, participation and secondary complications to a total of 69.6%. Functional Independence Scores were explained by negative perceptions of disability, growth and resilience and total secondary complication scores, explaining 49.4% of the variance in this measure.
Participation, functional independence and life satisfaction were significantly related to appraisal styles in this population. Negative perceptions of disability, fearful despondency and overwhelming disbelief were themes that impacted on the likelihood of participation and independence and involved in expressed levels of life satisfaction. Our results suggest the need to tackle cognitive styles of SCI patients before discharge to improve the rehabilitation process.
The 2003 Statistics Canada Health Services Access Survey found that 12% of Canadians polled did not have a family doctor, and 18% reported access problems such as long waiting times and difficulty contacting the doctor. Research has repeatedly shown that where a problem with access exists in the general population, it is considerably more severe in subsets of the population that are most disadvantaged. Statistics at both the national and local levels confirm that although people with disabilities have greater need for health services, including both institutional and community services, they also experience significant disadvantages in attempting to access service. The question explored in this study is how physicians' perceptions of disabled patients and behaviour towards them might affect access to primary care for adults with disabilities. The study used a qualitative interpretive approach to uncover physicians' perspectives on working with people with disabilities. Semi-structured interviews were conducted with a sample of 34 physicians in Eastern Ontario. Physicians were asked: How are disabled patients similar to/different from non-disabled patients? How are you as a physician different with disabled patients? Physicians' perceptions, as revealed by their responses to these questions, were interpreted in terms of four types of barriers to access to primary care for disabled adults: physical, attitudinal, expertise-related and systemic. These barriers were examined for their impact on finding a doctor, getting an appointment, getting into the office and receiving a reasonable standard of care.
Vast community provisions in Sweden are intended to offer spinal cord injury (SCI) subjects equal opportunities and the same living standards as the able-bodied. This study on all 56 subjects representing 3 distinct functional subgroups, out of a consecutive series treated at a Spinal Unit, explored the skills used in a wide range of community living activities and the details of these subjects' quality of life (QL). C6-tetraplegics with complete lesions (n = 15), wheelchair-bound paraplegics (n = 23) and ambulant paraplegics (n = 18) varied in physical independence in proportion to their disabilities but disturbances of mood states and QL perception did not differ between groups or from a control population sample. Eighty per cent of the subjects were engaged in gainful employment or education. Work/education, home management and mobility in the neighbourhood were clearly restricted by more severe disability but social and recreational activities were not. Degree of social activity and ability to drive a car were closely associated with levels of mental well-being and of perceived QL. Access to transport and home-help services, appropriate housing and technical aids included few unmet subjective needs, possibly explaining why these environmental factors did not inhibit the activity levels of the study population. Extensive society support and stimulation can satisfy important needs and expectations of well-functioning SCI subjects.
Quality of life (QOL) is often considered the primary endpoint in research, clinical medicine, and health promotion when impairments are incurable or insufficiently understood. For spinal cord injured (SCI) persons extended life spans and the need for life-long follow-up make it important to expand the outcome parameters of medical care and health services to include QOL measures. Study design: Review. Objectives: The aim of this study was to evaluate QOL research in SCI persons from the perspective of current criteria for instrument psychometric quality developed by Medical Outcomes Trust (MOT).
Relevant articles were extracted from the Medline, Cinahl, and PsycLit databases for approximately a recent 30-year period (1966 - 1999). The keyword 'spinal cord injuries' was cross-indexed with 'quality of life', 'personal satisfaction' and 'life satisfaction'. A total of 105 articles were identified and 46 met our inclusion criteria: (a) report of original research; (b) evaluation of QOL by self-report questionnaires or scales; and (c) publication in English.
The quality of the research designs varied widely. Most of studies were cross-sectional with limited study populations. The number of instruments or different combinations of instruments nearly equalled the number of studies conducted. Most questionnaires were condition-specific and only used by the developers. The variety of instruments and the diversity of their core content made results difficult to compare, and evaluations and conclusions unpredictable and sometimes contradictory. The low psychometric standard of many instruments used further aggravates the interpretation of results.
To improve future research in special populations such as the SCI, the MOT criteria for review of QOL instruments should be further disseminated and applied to reach desirable consensus of a limited number of standardised generic and condition-specific QOL measures.
To determine how chronic pain after spinal cord injury (SCI) interfered with sleep, exercise, work, household chores, and other daily activities and to define which clinical aspects of pain and psychosocial factors best predicted the extent of interference.
Postal survey; follow-up to a previous survey conducted 6 months earlier.
General community.
Individuals (n = 217) with traumatic SCI and chronic pain.
Subjects answered questions regarding frequency of interference caused by pain on 5 activities: sleep, work, exercise, household chores, and other daily activities. Asked to self-report sadness, fatigue, or anxiety; and to describe location, quality, and intensity of pain.
Demographic data (gender, age, level of injury); sociodemographic data (education, employment); self-reported psychosocial outlook; clinical characteristics of pain: location (drawing), quality (descriptors), and intensity (2 numeric rating scales). Regression analysis.
The questionnaire was returned by 65.8% of the sample (217/330). A large number of the participants (77.3%) reported frequent interference caused by pain, ie, "often" to "always" in 1 or more of the 5 activities. The combination of high pain intensity and the use of multiple pain descriptors was significantly associated with frequent interference with falling asleep. Frequent sleep interruption was significantly associated with high pain intensity, male gender, anxiety, and higher age at time of injury. In working individuals, frequent interference due to pain was significantly associated with multiple pain descriptors, anxiety, low level of education, and being older at time of injury.
Reported extent of pain interference in various areas of activity is related to clinical symptoms of pain as well as to psychologic and psychosocial factors rather than level of injury. The relationship between frequent interference, pain intensity, and multiple descriptors indicate that individuals experiencing several types of pain of high intensity are more likely than others to experience frequent interference with a variety of daily activities including sleep.
Comparative analysis of survey data produced in two countries.
To assess the degree to which environmental barriers impact social participation, and to identify the aspects of participation most affected.
Community-dwelling individuals with spinal cord injury in the USA and Turkey.
Subjects completed the Functional Independence Measure (FIM) motor score, the Craig Hospital Inventory of Environmental Factors (CHIEF), and the Craig Handicap Assessment and Reporting Technique (CHART). Analysis of co-variance was used to analyze CHIEF and CHART differences within and between country.
US subjects reported higher participation scores (CHART) and lower barriers (CHIEF), however, when controls for age, gender, time since injury and motor ability (FIM) were applied, country differences in reports of barriers were limited. Motor ability was the major predictor of participation, which was minimally affected by barriers.
Conceptualization and measurement issues may have been the reason for the minimal support for the hypothesis that environment affects participation. Suggestions for future research are made.
National Institute on Disability and Rehabilitation Research, Centers for Disease Control and Prevention.
Two studies were designed to examine important predictors of pain following spinal cord injury (SCI), and the impact of pain on self-reported quality of life (QOL). Pain was defined as "interference in day-to-day activities secondary to pain". In order to determine risk factors associated with the development of pain interference, Study 1 examined the predictive validity of multiple demographic, medical, and QOL variables at year 1 post-SCI to self-reported pain interference 2 years post-injury. Results showed that middle age (30-59-year-olds), lower self-reported mental health, and pain interference at 1 year post-SCI were the most important unique predictors of pain interference 2 years post-SCI. In Study 2, participants were separated into four groups; (1) those pain-free at years 1 and 2, (2) those pain-free at year 1 and in pain at year 2, (3) those in pain at year 1 and pain-free at year 2, and (4) those in pain at years 1 and 2. Results showed that only those experiencing a change in pain interference status reported a change in QOL. More specifically, those developing pain interference (group 2) from year 1 to year 2 reported decreased life satisfaction, physical health, and mental health, whereas, those with resolving pain interference from year 1 to year 2 reported an increase in these same domains. Unexpectedly, change in pain interference status was unrelated to change in self-reported handicap. Implications and future directions are discussed.
Multicentered follow-up with centralized data collection based on retrospective study.
To assess the outcome in a population of patients with spinal cord injury (SCI). The assessed outcomes are mortality, state of health, occupation, mobility, autonomy, social and partner relationships, quality of life (QoL), with the identification of any relation between results and demographic-clinical data.
Two rehabilitation centers (Udine and Trevi) and a Spinal Injuries Unit (Torino).
A total of 251 patients with SCI discharged after first hospitalization from rehabilitation facilities between 1989 and 1994 were enrolled. A questionnaire was administered by telephone.
During the time between discharge and follow-up, 25 out of the 251 patients had died, yielding a mortality rate of 9.96%. A total of 80 patients did not give their consent. The 146 patients' mean interval from discharge from the rehabilitation facility was 6 years. At least 25% has been hospitalized again. The descriptive analysis also shows that 29.5% of patients were working, 48.6% were able to drive, 63.7% would leave their home alone, 61% would leave home every day, 63% reported of a change in their relationships, 48.6% were happy with their love lives. Significant correlations have emerged between certain items and age: those who had a job, who could drive, were more autonomous and had a higher QoL are generally younger. Level of injury appear to be only associated with the degree of autonomy, which seems to be inferior for tetraplegic subjects. The injury's completeness and etiology do not exhibit any correlation. QoL is associated with a number of items: a higher QoL is linked to the possibility to work, especially if it is a paid job, to the ability to drive, to a good degree of autonomy, to a lack of change in the social and partner relationships, and to a satisfactory love life.
At 6 years after discharge from rehabilitations, the effects of trauma on work and social and partner relationships, domains correlated with autonomy and QoL, are evident. Further investigation by means of a prospective study over the years are therefore necessary.
To identify gender and racial and ethnic differences in subjective well-being (SWB), participation, and general health ratings in participants with spinal cord injury (SCI).
A multisite, cross-sectional study that used stratified sampling to identify and maximize participation among groups of people traditionally underrepresented in SCI research.
Four Model Spinal Cord Injury Systems participated in the data collection. The primary site was a large southeastern specialty hospital; the other 3 were in the western and mountain regions of the United States.
A total of 512 participants, 475 of whom were included in the analysis. This group included relatively equal portions of whites, African Americans, American Indians, and Hispanics. Approximately 40% of the sample was women.
Not applicable.
The primary outcome measures included 2 measures of SWB (Life Situation Questionnaire-Revised, Older Adult Health and Mood Questionnaire), 1 measure of participation (Craig Handicap Assessment and Reporting Technique), and several items from the Behavioral Risk Factor Surveillance System.
The majority of racial and ethnic differences in SWB related to specific life areas (eg, economics, employment), rather than more global outcomes (eg, engagement, health), with whites generally reporting the best outcomes, followed by African Americans. American Indians, and whites generally reported the highest participation scores, whereas limited differences were noted between the racial and ethnic groups on health indicators. Women reported lower satisfaction with health, more poor mental health days, and lower SWB related to home life, but higher SWB related to interpersonal relations.
There are racial and ethnic differences in outcomes after SCI focused primarily on subjective outcomes in areas in which racial and ethnic minorities have traditionally been disadvantaged. The results of this study direct rehabilitation professionals to the outcomes that need to be targeted for intervention to eliminate inequities in outcomes for all persons with SCI.
This study assessed the efficacy of a community-based program designed to provide Independent Living services (ILS) to people with new, traumatic spinal cord injuries (SCI). The program was implemented in six communities throughout the US served by Model SCI Care Systems where services are provided by Centers for Independent Living. Participants consisted of eighty-one people with new, traumatic SCI (38% intervention participants and 62% comparison group members). Each group was assessed with regard to ILS received, unmet needs for services, satisfaction with services and three outcomes: perceived control, quality of life and societal participation. Results show that program participants and comparison group subjects differed little in terms of either measures of ILS or the outcome measures. There were numerous associations between ILS and outcomes; those who felt that they did not need ILS tended to have superior outcomes to both those who received these services and those who said that they had unmet needs. Advocacy services had the strongest association with study outcomes. The study highlights the importance of minimizing the need for ILS. It also indicates that there is a need for improved communication among rehabilitation professionals working in large medical institutions and those working in community organizations.
Aims
The main aim of this study was to identify the changes over time on the functional status of people with spinal cord injury in a sample of the South Indian population, integrated in the community, following rehabilitation. It also aimed at evaluating the adaptations that occurred in that time period, in order to facilitate planning of services based on patient requirements
Methods
Data was gathered from medical records and through structured interviews from 85 individuals with traumatic paraplegia who were rehabilitated from the Christian Medical College, Vellore. The Functional Independence Measure was used to assess activities of daily living. Thirteen variables were analysed using Chi-square and Pearson's Correlation Coefficient tests.
Findings
The mean age of the patients at the time of study was 38.95±10.19. Out of the 85 patients, 89.4% were male, 43.5% were between 19 to 50 years of age and 61.2% were married. The most common site of spinal lesion (84.7%) was between T10 and T12. The majority, 64.7%, of the patients were ambulant with orthoses and appliances such as walker, crutches and canes. Most of the patients were independent in activies of daily living with some assistive devices (90.6%). The majority of the patients (76.5%) were over 5 years post injury.
Conclusions
Adjustments and adaptations occurred in a time period within 5 years post injury, after which the gains were stabilized. Rehabilitation and intervention measures should focus on the initial time frame after SCI.The results may provide better understanding to plan and co-ordinate rehabilitation measures for people with SCI.
Individuals with hightetraplegia, C1-C4, are living longer due to improvements in medical and rehabilitation care, as well as technology. It is unclear whether this increased longevity is associated with good subjective quality of life and full participation in family and community living. This study describes the outcomes of a group of 63 individuals with high tetraplegia who were interviewed at three phases: 5.3 ± 2.4 years, 13.1 ± 2.5 years, and 18.9 ± 2.6 years postinjury. The measures included demographics, characteristics of assistance with care, psychosocial variables, and time utilization. The results indicate that this group of individuals with high tetraplegia appeared to be functioning well in most areas of their lives. For those indicators that showed change over time, the SCI itself, not necessarily a high tetraplegic injury, and/or the aging process could account for the change. This study suggests that increases in longevity have provided individuals with high tetraplegia the opportunity to live rich and fulfilled lives.
This article describes a qualitative focus group research study designed to evaluate the role of an advocacy organization in assisting individuals with spinal cord injury to meet their goals in the community. The importance of basing health services and policy decisions on rigorous research that involves the intended service recipients will be discussed. The findings reinforce the importance of environmental factors, support from family and peers, adequate financial support and access to resources, living life with purpose, and social involvement in contributing to community participation and reintegration. Recommendations are made for ongoing program and service planning.
To validate a single item self-report of satisfaction with participation in two groups with differing patterns of symptoms and disease progress, multiple sclerosis (MS) and spinal cord injury (SCI).
Community-dwelling adults with MS (N = 1,271) or SCI (N = 620) completed a battery of self-report questionnaires covering demographic information, disease specific measures, symptoms, psychological distress, social-environmental issues, and overall well-being. They were also asked to rate satisfaction with participation: How satisfied are you with your ability to take part in activities that are important to you: not satisfied, somewhat satisfied, satisfied, or very satisfied. Kendall's tau rank correlation coefficient and χ(2) tests were used to examine the strength and direction of associations between demographic and symptom variables and responses to the participation item.
Although the demographics of the MS and SCI differed in predictable ways, younger participants and those employed report more satisfaction with participation. Ratings of satisfaction with participation were also consistently associated with a number of variables including less fatigue, pain, depression, stress, anxiety, as well as higher overall measures of well-being across the two populations.
More research is needed to better understand the multiple dimensions that comprise participation and to develop robust and sensitive measurement tools. A global rating of satisfaction with participation using one item has a number of potentially useful applications including description of case mix in clinical trials.
Individual semi-structured interviews were conducted with 17 individuals who had experienced a traumatic spinal cord injury (SCI), focusing on the participants' lived experience of SCI. The interviews were transcribed verbatim and were analysed for recurrent themes using interpretative phenomenological analysis (IPA). Here, we present three inter-related recurrent themes all concerning difficulties in adjusting to home life following hospital discharge: "loss of camaraderie", "lack of post-discharge care" and "other people's reactions to spinal cord injury". Participants reported that the camaraderie they formed with fellow patients during their rehabilitative stay in hospital generated feelings of security and community. This was discussed in stark contrast to the isolation and loneliness that they subsequently experienced post-hospital discharge. A perceived lack of physical, practical and psychological support coupled with negative and stigmatising reactions of the wider community served to make adjustment to home life post-SCI particularly difficult for the participants. The findings are discussed in relation to extant SCI literature, and recommendations for future health care of individuals with SCI are made.
To describe participation among a community-based sample of adults with spinal cord injury (SCI) and to explore the relationship between participation and life satisfaction.
Survey.
Community.
A sample of 357 people (response rate, 44%) with SCI recruited through the British Columbia Paraplegic Association. The mean age +/- standard deviation was 46.0+/-14.7 years, mean time since SCI was 13.0+/-11.0 years, and 68% of the respondents were men.
Not applicable.
Descriptive survey data on community participation specifically related to social involvement, physical activity and relationship with others, transportation, and community access. Life satisfaction and happiness assessed using the Satisfaction With Life Scale and Happiness Scale.
No limitations to participation were experienced by 18.5% of the respondents. Satisfaction with transportation was associated with owning one's own vehicle (P<.001). There was overall satisfaction with access to community buildings (mean score range, 6.9-8.5; where 10 is most satisfied). Being physically active was important to a majority and 75% were currently engaged in physical activity. Those living alone were less satisfied (mean, 7.3+/-2.7; where 10 is most satisfied) with the support they received than those living with others (8.5+/-1.7). Respondents were generally happy (5.0+/-1.4) and satisfied with life (18.6+/-7.6).
This study provides a rich description of the multifaceted nature of participation and its association with life satisfaction as identified by people with SCI living in the community.
Purpose. To highlight research priorities of people with spinal cord injury (SCI), outline the current state of rehabilitation research and suggest potentially fruitful avenues for future inquiry. Method. Commentary. Results. People with SCI identify pain, depression, fatigue, pressure sores, spasticity and the management of bladder and bowel as research priorities. Research reveals multiple interconnections between these secondary problems, all of which negatively impact quality of life (QOL). However, despite a substantial volume of existing research, significant gaps in knowledge remain, duplications of research effort are apparent and few interventions have an adequate evidence base. Issues concerning community participation - another research priority - have only recently attracted researchers' attention. Conclusions. This commentary contends that research should: focus on issues and outcomes of relevance and importance to people living with SCI; address the complexities of secondary conditions and their inter-relationships; appraise environmental barriers to participation in meaningful living; be designed to identify and inform effective and relevant interventions. Innovative approaches to research partnerships, mixed methods and exploring variables usually omitted from quantitative studies might enhance the likelihood that the complexity of issues facing people living with SCI will be identified and addressed. Moreover, a governing focus on achieving lives experienced as hopeful, purposeful, satisfying and meaningful could contribute to enhancing QOL outcomes following SCI.
To analyze the correlates of life satisfaction for individuals with spinal cord injury (SCI).
Survey; follow-up of subjects studied prospectively since onset of injury.
A total of 2,183 persons with SCI, from 1 to 20 years postinjury, self-selected for annual research (and clinical) follow-up by one of 18 model systems of SCI care.
Life satisfaction, as measured with the Satisfaction With Life Scale (SWLS), is associated with several demographic, social, functional, and clinical characteristics. Stepwise linear regression analysis resulted in a predictor model that included the following: sex (beta weight: .07; p < .001); number of rehospitalizations in the last year (-.05; p < .05); years since injury (.13; p < .0001); sociocognitive disability as measured with the Functional Independence Measure (.06; p < .01); and three handicap components, as measured with the modified Craig Handicap Assessment and Reporting Technique: mobility (.26; p < .0001); occupation (.10; p < .001); and social integration (.11; p < .0001). Impairment (level of injury) contributed indirectly, through its impact on motor disability. Racial/ethnic group membership, motor disability, and education contributed indirectly, through their effects on handicap.
Life satisfaction after SCI can be reliably measured by means of the SWLS. Correlates of subjective well-being parallel those suggested by earlier studies and those for the population at large. The effects of life satisfaction on social participation, health, and other aspects of life need further study.
To determine the influence of demographic and injury characteristics on the community reintegration of people with spinal cord injury (SCI).
Prospective cross-sectional and longitudinal examination of individuals with SCI.
Follow-up of individuals at 1, 2, 5, 10, 15, and 20 years after SCI who received their initial rehabilitation in a Regional Model Spinal Cord Injury System.
A total of 3,835 individuals who met the inclusion criteria for the National SCI Database were studied cross-sectionally, and a subset of 347 individuals who were also enrolled in a longitudinal study of aging with SCI.
Subscales of the Craig Handicap Assessment and Reporting Technique (CHART).
Neurologic classification, age, years postinjury, gender, ethnicity, and education explain 29% of the variance in physical independence, 29% of the variance in mobility, 28% of the variance in occupation. 9% of the variance in social integration, and 18% of the variance in economic self-sufficiency.
Although these factors are inadequate to explain most of the variation in community reintegration (handicap) after SCI, they might appropriately be used to adjust for case-mix differences when comparing rehabilitation facilities and techniques.
To investigate the relationship between objective and subjective indicators of handicap or community participation among people with spinal cord injury (SCI) 1 year postinjury.
Longitudinal correlational study of quality of life indicators linked to Northern New Jersey SCI System database.
A total of 126 (80% male) participants was assessed at 1 year post-SCI. Age ranged from 14-83 years (median age = 34 years); 47% had tetraplegia, and 53% had paraplegia.
Objective (or normative) handicap was measured using the Craig Handicap Assessment and Reporting Technique and the Community Integration Questionnaire. Subjective feelings about each area of handicap or community participation were assessed using the Andrews Delighted-Terrible scale.
Significant correlations were found between objective and subjective indicators of handicap in work life, social life, mobility, and economic status. Subjective handicap also correlated modestly with severity of impairment and length of hospitalization. These correlations were, however, weak or inconsistent across individuals. Subjective quality of life was not related to preinjury economic or social handicap. Some participants spontaneously reported dissatisfaction with items outside of the standard outcomes scales used (eg, sexuality and personal relationships).
The weakness and inconsistency of relationships between objective and subjective appraisals of areas of community participation is a challenge to outcomes measurement and has implications for the targeting of interventions. More research is needed to understand relationships between objective indicators of community participation and subjective appraisals of these areas.
Unlabelled:
This learner-directed module on spinal cord injury (SCI) presents a variety of perspectives of the process of personal and environmental adaptation for reintegration. Adaptation is unique to each person and does not predictably follow stages. Models used for understanding the process include biopsychosocial, ICIDH-2 (International Classification of Functioning, Disability and Health), and sector divisions of the environment. Home modification requires home (intermediate environment) evaluation and sociospatial behavioral mapping for planning and appropriation of remodeling in proportion to functional need and use. Options for access to the natural environment include specialized wheelchairs, climbing rigging, kayaks, and sail boats. Sports participation with adaptations is expanding and includes a larger variety of organizations and leagues. Economic needs are effectively anticipated with development of a life care plan. Procreative options to overcome infertility after SCI include vibratory stimulation for ejaculation, intravaginal insemination, intrauterine insemination, in vitro fertilization, and intracytoplasmic sperm injection. Approaches to requests for withdrawal of life-sustaining care include depression screening, pain evaluation, and assistance in accomplishment of person centered goals. Overall, community reintegration after SCI is continually improving because of better acceptance, accessibility, and technology for building adaptations.
Overall article objectives:
(a) To review models and theories of medical intervention and disablement and (b) to demonstrate their application in rehabilitation practice by designing unique treatment plans that meet patient person-centered goals.
This study compares independent living outcomes in persons with traumatic brain injury (TBI) and spinal cord injury (SCI). Both injuries represent life-altering events that are known to have a negative impact on independent living and are predominantly experienced by members of the same demographic group. However, the types of resultant impairments and disabilities experienced by the two populations differ substantially. The TBI participants were recruited consecutively from Canada's largest tertiary care trauma centre and followed prospectively for four years. The SCI participants were recruited via a mailed survey to members of a provincial branch of the Canadian Paraplegic Association. Independent living outcomes were measured using DeJong and Hughes' (1982) classification system of productivity status, the Reintegration to Normal Living Index, and questions on assistance from environmental supports in the form of wheelchair use and paid/unpaid personal assistance. The TBI group was found to be significantly more productive, have higher levels of satisfaction with their current experience of community integration, and use fewer environmental supports than their SCI counterparts (P<or=0.0001). Methodological and demographic differences between the samples are discussed in relation to the results. The results suggest that various aspects of independent living in these two defined groups (TBI and SCI) although highly related require specific attention and that clinicians and researchers working with TBI and SCI might benefit from further collaborative efforts.
Introduction:
Spinal cord injury (SCI) often causes severe disabilities. The degree of functional impairment strongly depends on the level and completeness of lesion (tetraplegic, paraplegic). But evaluation of outcomes also needs to consider the broader concept of health-related quality of the life (HRQL) for SCI patients. A multinational group of clinicians and researchers assessed this concept and reviewed the available instruments for measurement of quality of life in this group of patients.
Time points:
Phase I is in the acute clinic; phase II during rehabilitation; phase III after discharge home. Annual follow-up investigations should be maintained. The phase of initial care (phase 0) is important for prognosis and should, therefore, be part of the documentation.
Instruments:
Criteria used to evaluate current QoL measures: reliability, validity, responsiveness, availability of translations, application in SCI patients, existing population norms. Several specific instruments or subscales exist for the following domains: physical and psychological functioning, pain, and handicap. Well-known generic measures of HRQL also have been applied to SCI patients, and a disease-specific instrument has been developed (SCIQL-23). A variety of subjective quality of life measures were evaluated as well.
Group consensus/guideline:
Prior to discharge from rehabilitation, the group suggested the use of the Functional Independence Measure, the Hospital Anxiety and Depression Scale and a Visual Analogue Scale for pain. Following discharge from the acute clinic, the SF-36, the Craig Handicap Assessment and Reporting Technique, the Quality of Well-being Scale, or the Life Satisfaction questionnaire were proposed. However, the evidence supporting the use of these instruments is sparse.
The purpose of this study was to determine factors associated with community integration of adults who sustained spinal cord injuries as children or adolescents. Outcome measures included the Craig Handicap Assessment and Reporting Technique and measures of independent living. Independent variables include demographic factors, level of injury, functional independence as measured by the Functional Independence Measure, and perceived health as measured by Short Form-12 physical and mental component scores. Data were analyzed by multiple regression analyses for each of the outcome measures. Two-hundred and sixteen adults (150 males and 66 females) were interviewed. Mean age at interview was 29 years (range 24 to 27 years) and mean age at injury was 14 years (range 0 to 18 years). Results showed that the five factors most strongly associated with community integration were education level, employment, income, functional independence, and health status. Factors that were not associated with community integration included sex, age at injury, duration, and level of injury.
This paper presents the results of a 2-year mixed methodology (quantitative and qualitative) study examining the reintegration and quality of life of community-residing adults with spinal cord injury (SCI). A convenience sample of 100 individuals with SCI completed three questionnaires for the quantitative study phase. A self-selected subsample of 34 of the participants then attended qualitative focus groups to further explore adjustment to living in the community after SCI. The results revealed that locus of control is crucial to subjective quality of life, productivity status, satisfaction with performance of daily activities and satisfaction with community integration. Respondents confirmed that substantial adjustments are required after SCI, and that these can be aided through education, involvement in productive activity and participation in social and leisure activities. A dominant finding was that social support and peer mentoring were invaluable. Stable health and appropriate pain management were crucial to subjective satisfaction with community integration, yet for many of the respondents these were elusive. Although the participants valued the rehabilitation process, they felt that "the system" was not client-centred and that the timing of services and information was not always relevant to individual needs. The clinical and practical implications of these results are discussed.
to examine longitudinal changes in community reintegration among people aging with spinal cord injury, and to determine if these changes are related to demographic variables and scores on psychosocial measures of stress, life satisfaction, depression, psychological well-being, and perceived quality of life.
178 members of a British population-based study of outcomes after spinal cord injury were evaluated at three-year intervals from 1990 to 1999. Participants responded to a questionnaire that included measures of community integration and perceived psychosocial status. Scores and results were analyzed to identify changes over time in community reintegration.
The findings indicate a general decline in community reintegration over time in terms of physical independence, mobility, occupation and social integration. However, economic self-sufficiency appears to steadily improve as time passes. Life satisfaction also declined over time and was related to community reintegration. Measures of emotional distress were not important predictors of community reintegration.
Community reintegration declined over time in this sample of British individuals aging with SCI. Although there were concurrent relationships between demographic variables of age and neurologic group, neither these factors nor duration of injury appeared to impact change in community reintegration. More significant was the relationship between perceived life satisfaction and community integration.
To examine gender and minority differences in the prevalence and severity of pain in people with traumatic-onset spinal cord injury (SCI) during follow-up, and to determine the relation of those differences to demographic characteristics, etiology of injury, and level and extent of the lesion.
Survey and analysis of cross-sectional data using case-control methodology and multiple regression methods.
Model Spinal Cord Injury Systems (MSCIS).
A total of 7379 individuals with traumatic-onset SCI from 16 MSCIS entered in the National Spinal Cord Injury Statistical Center database between 1998 and 2002.
Not applicable.
Prevalence and severity of pain as reported in follow-up surveys.
Pain prevalence remained fairly stable over time, ranging from 81% at 1 year postinjury to 82.7% at 25 years. Pain was no more common in women than in men, nor did pain severity scores differ significantly. However, pain prevalence was significantly lower among nonwhites, although they tended to report a higher average pain severity score when pain was present. Also, people with SCI who were employed when injured, who had more than a high school education, and who were not tetraplegic reported a higher prevalence of pain. Pain interfered with work more often for women and nonwhites during some, but not all, follow-up years, and for those who were not employed at the time of interview, for those whose SCI was caused by violence, for those with paraplegia, and for those with incomplete SCI.
Pain is a common and significant problem for the majority of people with SCI. It may interfere less frequently with work over time, which suggests that an adaptive process may be occurring. Gender differences in the pain experience did not emerge, but nonwhites tended to have a lower prevalence of pain. If pain was present, nonwhites tended to report more severe pain than did whites. Further research is needed to delineate the possible psychosocial and biomedical causes of these findings.