Stroke, social support and the partner

Abstract

Stroke is one of the most common conditions with about 45,000 people suffering a first stroke in the Netherlands each year. Although survival after stroke has increased in recent decades, a substantial part of the survivors of stroke remain physically or cognitively impaired and in need of support in their everyday life. This has a tremendous impact on the patient’s environment as well, in particular on the partner of the stroke patient. Often the partner is the main support provider. Caring takes time and physical and emotional efforts, and may come with feelings of burden and decreased quality of life. Most studies have focused on the negative impact of caregiving, although positive caregiving experiences, such as enhanced self-esteem and satisfaction, have also been reported. The general aim of this Thesis, was to explore the interrelationships between the stroke patient and the partner. We examined the patient’s social support (Part I) and the partner’s experienced burden and quality of life (Part II) using data of two cohort studies (FuPro-stroke study and Restore4Stroke Cohort study). Part I presents a systematic review of the literature. Positive, but not consistent, relations between social support and higher patients’ health-related quality of life were described. Emotional support was the most often investigated subtype of social support and showed stronger relationships with higher health-related quality of life, compared to other subtypes such as informational or instrumental support. Subsequently, we analysed data from the FuPro-Stroke study to elucidate the relationship between the amount of received social support reported by stroke patients and their level of depressive symptoms. More than one-third of the participants showed depressive symptoms. The amount of perceived social support declined significantly from inpatient rehabilitation until three years post-stroke. We found divergent relationships between subtypes of social support and depressive symptoms. Everyday support and esteem support were associated with less depressive symptoms, whereas support in problem situations was a predictor of more depressive symptoms. In Part II, we found positive and negative caregiver experiences to co-exist and be related to partners’ life satisfaction three years post-stroke. Positive caregiving experiences mediated the impact of negative caregiving experiences on life satisfaction, which underlines the importance of positive caregiving experiences. Many partners in the Restore4Stroke Cohort study suffered from high levels of burden, anxiety and depressive symptoms. Only anxiety decreased between two months and one year post-stroke. High levels of partner burden, anxiety and depressive symptoms at two months were the strongest predictors of high levels of partner outcomes at one year post-stroke. Besides these partner variables, patient variables were important: patients’ anxiety symptoms at two month post-stroke was a significant predictor in the prediction of partners’ burden and anxiety symptoms at one year post-stroke. Based on the results of our studies, we recommend a dyadic perspective in stroke care, as patient and partners are interdependent in their relationship. Stroke patients and their partners should be followed up to the chronic phase regarding quality of life and partner burden to provide them with appropriate support and counselling. Also social support and both negative and positive caregiving experiences should be taken into consideration.