Quality of life in and after spinal cord injury rehabilitation: a longitudinal multicenter study.

PURPOSE: To investigate the changes in quality of life (QOL) in persons with spinal cord injury (SCI) and their close persons during the first 2 years post injury. METHOD: Longitudinal multiple sample multiple wave panel design. Data included 292 patients recruited from Austrian British German Irish and Swiss specialist SCI rehabilitation centers and 55 of their close persons. Questionnaire booklets were administered at 6 weeks 12 weeks 1 year and 2 years after injury to both samples. RESULTS: Study 1 investigated the WHOQOL-BREF domains in individuals with SCI and found differences mostly in the physical domain indicating that QOL increases for persons with SCI from onset. An effect of the culture was observed in the psychological and environmental domains with higher QOL scores in the German-speaking sample. Study 2 compared individuals with SCI to their close persons and found differences in the physical environmental and social domains over time. The scores on the psychological dimension did not significantly differ between the persons with SCI and their close persons over time. CONCLUSION: QOL measured by the WHOQOL-BREF shows that QOL changes during rehabilitation and after discharge. Apart from the physical dimension the persons with SCI and their close persons seem to experience a similar change in QOL. Further longitudinal research is suggested to clarify the mutual adjustment process of people with SCI and their close persons and to explore cultural differences in QOL between English-and German-speaking countries.

Perceptions of gain following spinal cord injury: a qualitative analysis.

BACKGROUND: Significant research has focused on psychological difficulties following spinal cord injury (SCI), and there is a small prevalence of individuals who experience distress after injury. However, the converse is that many adjust well to injury and rate their quality of life highly. Despite this, there has been a comparative dearth of research investigating positive psychological outcomes after SCI, perceived by individuals living with this disability. OBJECTIVE: To explore individuals' perceptions of gain following the experience of SCI. METHODS: Participants, who had sustained an SCI between the ages 16 and 83, responded to an open-ended written question: "What do you think you have gained from the experience of spinal cord injury?" This was administered at 4 time points post injury: 6 weeks, 12 weeks, 1 year, and 2 years. RESULTS: Participants' responses were analyzed qualitatively using the framework of thematic analysis. Thirteen themes were identified: relationships, appreciation of relationships, perspective and appreciation of life, new goals or priorities, understanding of SCI or disability, appreciation of health or health care, changed personality, opportunity or challenge, knowledge of SCI or body, newly acquired skills, spirituality, acceptance, and nothing. Descriptive statistics were incorporated in the presentation of the data. CONCLUSIONS: This study provides evidence that a broad range of positive as well as negative psychological outcomes are possible following SCI. More research is needed to better understand the process through which these outcomes arise and to inform how such outcomes may be communicated to persons experiencing this type of injury.

Appraisals, coping and adjustment pre and post SCI rehabilitation: a 2-year follow-up study.

STUDY DESIGN: Longitudinal, multi-wave panel design. OBJECTIVES: To explore the changes in and the relationships between appraisals and coping with mood, functioning and quality-of-life (QOL) pre- and post-rehabilitation for acute spinal cord injury (SCI). SETTING: The data collected was part of an ongoing study from specialist units in selected British, Swiss, German and Irish SCI centres. METHODS: Questionnaires (Functional Independence, QOL, Mood, Appraisals, Coping and Support) were administered to 232 patients at 12 weeks post injury and sent to participants at 1 and 2 years post injury by post. RESULTS: Significant changes were observed in various outcome measures between 12 weeks and 1 year post injury, with little significant change occurring during the following year. Appraisals and coping at 12 weeks post injury were significantly related to outcome scores and also contributed significantly to the variance in QOL, mood and stress-related growth at 2 years post injury. CONCLUSION: The study provides further evidence for the link between appraisals, coping and subsequent adjustment to injury. Suggestion is made for the potential benefit of early assessment and intervention for patients at risk of poor adjustment to SCI.

Self-efficacy and self-esteem as predictors of participation in spinal cord injury--an ICF-based study.

STUDY DESIGN: A multi-centre cross-sectional study. OBJECTIVE: To examine the relationship of self-efficacy and self-esteem with participation of persons with spinal cord injury (SCI) from a comprehensive bio-psycho-social perspective, based on the conceptual framework of the International Classification of Functioning, Disability and Health (ICF). SETTING: Community-dwelling participants, <5 years post discharge, recruited through three SCI rehabilitation centers in Switzerland. METHODS: Data were collected by means of standardized self-report questionnaires sent to the eligible participants by postal mail. The questionnaires covered the different components of the ICF's bio-psycho-social model, namely health conditions, body functions, participation, environmental and personal factors. Bivariate correlations and multivariate linear regression analyses with participation as the dependent variable have been conducted. RESULTS: In all, 102 persons with SCI answered the survey, response rate 25.9%. Self-esteem (r=0.61) and self-efficacy (r=0.54) correlated highly with participation and were the strongest correlates of participation. They were stronger correlates of participation than symptoms of anxiety, depressive symptoms, pain, health conditions, social support, coping styles or sense of coherence. Participation seemed to be independent of gender, age, level or completeness of injury. Self-efficacy and self-esteem explained together with time since discharge and years of education 48% of the variance in participation adjusting for health condition, depressive symptoms, pain interference and social support. CONCLUSION: Considering self-efficacy and self-esteem within the comprehensive framework of the ICF can contribute to a better understanding of functioning, disability and health in SCI, which in turn may facilitate the development of interventions to support the persons' adjustment and reintegration.

Sense of coherence and psychological outcomes in people with spinal cord injury: appraisals and behavioural responses.

STUDY DESIGN: Longitudinal, multi-wave design. OBJECTIVES: To investigate the contribution of sense of coherence (SOC), appraisals, and behavioural responses when predicting psychological outcomes to spinal cord injury (SCI). METHOD: Patients (N=237) sustaining a SCI aged 17 or above were recruited from specialist spinal injuries centres across six European countries. Measures of SOC, appraisals, coping strategies, and psychological well-being were administered at 6 and 12 weeks post-injury and at a 1 year follow-up. RESULTS: People scoring high on SOC at 6 weeks post-injury showed significantly better psychological outcomes at 1 year post-injury and SOC showed significant relationships with appraisals at 12 weeks post-injury and coping strategies 1 year post-injury. Significant relationships were found between appraisals at 12 weeks post-injury and psychological outcomes, adaptive coping strategies were significantly related to psychological well-being at 1 year post-injury. Regression analyses found SOC, appraisals, and coping behaviours to explain 61.8% of the variance in psychological quality of life, 66.5% of the variance in depression, and 37.7% of the variance in anxiety at 1 year post-injury. CONCLUSION: This study provides further evidence in support of previous findings which suggest SOC to have a primary role in long-term psychological well-being. The relationship described here - from SOC to the appraisal of injury and subsequent behavioural responses - suggests SOC to be an influential factor in the long-term adjustment of people with SCI.

Cognitive appraisals, coping and quality of life outcomes: a multi-centre study of spinal cord injury rehabilitation.

STUDY DESIGN: Longitudinal, multiple wave panel design. OBJECTIVES: To investigate the degree to which current thinking in terms of early appraisals and coping predicts adjustment and quality of life outcomes after spinal cord injury, and to what degree social and demographic variables are involved. SETTING: Data were analysed from 266 patients recruited as part of an ongoing study from specialist units in selected British, Swiss, German and Irish spinal centres. METHOD: Questionnaire booklets were administered as soon as possible after injury onset and after 12 weeks to patients with newly acquired spinal cord injuries. Individuals included had sustained their injury between the ages of 16 and 83. RESULTS: Significant improvements in outcome measures were found across the data set within the first 12 weeks after spinal cord injury and changes observed in the appraisals and coping strategies employed. Significant differences were found between participating centres on both outcome measures and in the coping and appraisal processes used. Coping and appraisal processes at 6 weeks after injury were found to contribute significantly to the variation in psychological well-being at 12 weeks after injury. CONCLUSION: This study shows the process of adjustment to spinal cord injury to begin in the early stages of rehabilitation, and initial appraisals are important to how an individual will cope with their injury and to their psychological well-being. Support is also given to the importance of psychological factors to functional outcomes.

Condition-related coping strategies in persons with spinal cord lesion: a cross-national validation of the Spinal Cord Lesion-related Coping Strategies Questionnaire in four community samples.

STUDY DESIGN: Cross-sectional, questionnaire. OBJECTIVES: Coping strategies employed to manage the consequences of a spinal cord lesion (SCL) have been found to be distinctly related to emotional well-being. However, research and clinical implications have been hampered by the lack of cross-validated measures that are directly related to the lesion and its consequences. This study investigates the psychometric performance of the SCL-related Coping Strategies Questionnaire in four different countries. SETTING: Austria, Germany, Switzerland and UK. METHODS: The study sample comprised 355 community residing persons with SCL. Multi-trait/multi-item analysis methods and non-parametric and parametric tests were used. RESULTS: The Acceptance coping scale showed satisfactory psychometric qualities, whereas there were some problems in the Fighting spirit scale and greater problems in the Social reliance scale. Compared with the Swedish developmental sample, Acceptance was used more in the four study countries. Consistent with the original sample, Acceptance and Fighting spirit coping correlated with fewer signs of emotional distress, persons lesioned > or = 5 years tended to report more Acceptance than the newly lesioned and coping strategies were mainly unrelated to neurological status. CONCLUSION: The English and German language versions of the Acceptance coping scale were valid and reliable, whereas some translated items in the Fighting spirit scale need to be revised. Translations of the Social reliance scale need to be thoroughly revised and retested. The results add further evidence to the literature on the stability of the link between adapting life priorities (ie Acceptance) and emotional well-being.

Quality of life, social participation, appraisals and coping post spinal cord injury: a review of four community samples.

STUDY DESIGN: Cross-sectional or psychotherapy, questionnaire. OBJECTIVES: To examine the community needs of people with spinal cord injury (SCI) across four European countries and to identify areas of unmet needs. It is intended that this information will be of use to rehabilitation professionals in fostering greater social participation among SCI individuals. SETTING: United Kingdom, Germany, Austria and Switzerland. METHODS: Self-report questionnaires were sent to 1000 people with SCI resident in the community in the UK, Germany, Austria and Switzerland. Questionnaires measured current needs, community integration, mood, appraisals, coping strategies, functional independence and perceived manageability. RESULTS: Occupation, sexual activity and pain relief were areas indicative of highest community needs in all four countries. Most participants were psychologically well adjusted and socially integrated into the community. Well-addressed needs were skin management, wheelchair needs and accommodation. Some differences that occurred in certain areas across the four countries were found. CONCLUSION: This study has highlighted that the main areas of unmet needs for a European community sample of people with SCI includes levels of occupation, sexual activity and pain relief. The findings will be of interest to those involved in rehabilitation of newly as well as long-term injured people and demonstrate the need to consistently re-address such issues as part of a person's long-term rehabilitation in order to achieve and maximise effective social participation.

Post traumatic distress symptoms following spinal cord injury: a comparative review of European samples.

OBJECTIVE: To highlight any cross-cultural differences in the prevalence of post traumatic distress (PTD), and the type of coping strategies implemented following spinal cord injury (SCI). DESIGN: Cross-sectional questionnaire. SETTING: A spinal cord rehabilitation unit in the UK, and six Swiss and German (CH/DE) spinal injury centres. METHOD: A total of 85 SCI individuals in the UK, and 71 in CH/DE were evaluated on levels of PTD using the Impact of Event Scale (IES), and depressive symptomatology using the Beck Depression Inventory or the Berne Questionnaire of Well-Being at up to 6 months postinjury. In addition, the coping strategies utilised by the two samples were assessed using the COPE measure. RESULTS: No significant difference between the two samples was noted with regard to levels of PTD determined by the total score on the IES, although there was a tendency for a higher rate in the UK. Approximately 20 and 10% of both samples scored above the clinical cutoff on the IES subscales of intrusion and avoidance, respectively. No significant difference was found to exist between the rate of PTD in the SCI CH/DE sample and the able-bodied sample in Switzerland. A lower prevalence of depression was noted in the CH/DE sample. The CH/DE sample scored higher on the use of positive reinterpretation and growth, suppression of competing activities, active and restraint coping, whereas the UK sample scored higher on the use of humour as a coping strategy. Overall, denial, focusing on and venting of emotions, mental disengagement and suppression of competing activities were associated with PTD. CONCLUSION: No cross-cultural differences in the level of PTD seem apparent between the UK and CH/DE populations. Future research should focus on determining what protects individuals from developing PTD following SCI.