Empowerment, quality of life and participation in neurological rehabilitation. Empirical study with stroke patients and their relatives

The active role (participation) that patients with chronic conditions are able to achieve has increasingly been recognised as a measure for the effectiveness of prevention and rehabilitation strategies. An empowerment scale is an especially effective instrument for measuring social participation and was applied to stroke patients in neurological rehabilitation for the first time. 26 stroke survivors and 26 informal carers who participated in self-help groups in Lower Austria were surveyed. The mean age was 63.9 (±10.4) (stroke survivors) and 61.9 (±9.6) years (informal carers). The mean duration of disease was 7.3 (±3.2) years and the mean length of self-help group participation approximately 4 years. Every other stroke survivor and every fifth informal carer had to give up their professional life because of the stroke. Financial burden, reduction of vacations and social activities was found for both groups. Informal carers more frequently reported an increased fear of a relapse and generally of the future. One third of the stroke survivors had insomnia, depression, and nervousness. Reduced mobility, memory impairment, and increased sensitivity to temperature-changes were seen as the largest burdens. In spite of the large overlap in many domains of empowerment and quality-of-life measures, empowerment measures also seem to reflect aspects of social participation. Therefore, measures of empowerment should be included in long-term outcome measurements following stroke.