Coping strategies and health-related quality of life in persons with traumatic spinal cord lesion

Abstract: Aims: The overall aims of the thesis were to investigate coping strategies employed by persons with traumatic spinal cord lesion (SCL) to cope with the lesion and its consequences, and to study the relations between coping strategies and health-related quality of life (HRQL). Further, specific contributions to SCL-related scale development were given.Methods: Participants were recruited among community-residing persons with SCL from a typical rural/urban Swedish area. Characteristics of the participants were comparable to the general Swedish SCL population. In a cross-sectional design, items in a pool derived from in-depth interviews, literature reviews and the transactional theory of stress and coping were tested. Standardised instruments were used to assess general coping strategies, social support, and HRQL. A rigorous psychometric procedure was used. First, 274 persons participated in the development of SCL-related coping strategies and emotional well-being measures. Second, a subsample of 256 persons participated in studies of relations between SCL-related coping strategies and a wide range of HRQL domains. Third, a further subsample of 181 persons participated in a comparison of SCL-related and general coping strategies. Three reference groups were used: 167 persons with SCL from the same catchment area, 110 age- and sex-matched persons from the Swedish norm group (SF-36), and a general population sample of 264 persons.Results: The SCL-related Coping Strategies Questionnaire (SCL CSQ) and SCL-related Emotional Well-being Questionnaire (SCL EWQ) both met basic psychometric standards for reliability and validity. The SCL CSQ comprises three factors: Acceptance (i.e. revaluation of life values); Fighting spirit (i.e. efforts to minimise the effects of the lesion); Social reliance (i.e. a tendency towards dependent behaviour). The SCL EWQ included three factors: Helplessness (i.e. feeling perplexed, out of control and low self-esteem); Intrusion (i.e. bitterness and brooding); Personal growth (i.e. positive outcomes of life crisis). There were clear limitations in participants' generic HRQL compared to age- and sex-matched references. Two SCL-related coping factors were clearly associated with all HRQL domains when social support and a wide range of sociodemographic and disability-related variables were controlled for. Persons scoring high on Acceptance reported better HRQL whereas high scores on Social reliance were related to decreased HRQL. SCL-related coping strategies were psychometrically more stable and stronger related to overall quality of life than general coping strategies.Conclusion: SCL-related coping strategies are distinct correlates of HRQL. Revaluation of life values is associated with better HRQL whereas unconditional reliance on other people is linked to unsatisfying HRQL. The results suggest the importance of coping strategies in further research studying factors that may mediate the effect of stress on HRQL among persons with SCL. Continued and emphasised focus on individuals coping strategies and evaluation of HRQL outcome in rehabilitation and follow-up is proposed.