Life situation after stroke the spouses' perspective

Abstract: In Sweden approximately 30,000 people suffer from stroke every year, of which some 20,000 for the first time. The disease is one of the most disabling chronic diseases in the adult population, with severe consequences for both patients and their families. Living with a person, affected by a chronic illness, is often characterized by a reduced sense of individual freedom and increased sense of responsibility. The aim of this thesis was to determine the impact of a nurse led support and education programme for improving the spouses' perceived general QoL, life situation, general well-being, and health state (Paper I). It was also to explore gender differences among spouses in perceived psychological well-being, and general life situation, during the first year after the patients' stroke event (Paper II). Another aim was to identify the factors that predict the general quality of life among spouses of stroke patients, and to determine if these predicting factors change during the first year after the patient's stroke event (Paper III). It was also to test the psychometric properties of a questionnaire measuring the life situation among spouses of stroke survivors (Paper IV). The participants were randomly assigned to an intervention group or a control group, 50 in each group (Paper I). In Paper II, the groups consisted of 80 female and 20 male spouses respectively, and in Papers III and IV, the whole sample of 100 spouses was used. There were no significant differences between intervention and control groups over time (Paper I). The intervention group, attending 5-6 times had decreased their negative well-being significantly after six and 12 months. Their PQoL increased significantly after 12 months. In the group attending 1-4 times, positive well-being decreased significantly the first six months. There were differences in general well-being and positive well-being between male and female spouses over time (Paper II). Male spouses had a better-perceived general and positive well-being, and lower negative well-being and AVAT than the female spouses. No other significant differences were found between the genders. Life situation and Present economic situation were the only predictors of QoL that emerged in all three of the regression analyses (Paper M). The emerging predictors of QoL that changed over time were: General Well-being, Own illness, SOC, AVSI, Bl, education, and AVAT. The included predictors explained 49%, 54%, and 56% respectively of the variance in QoL in the model. The LISS-questionnaire showed high psychometric properties in the reliability and validity analyses (Paper IV). The findings in this thesis demonstrate that spousal informal caregivers of stroke patients have a complex life situation due to the stroke event, and that this has many negative effects on their perceived QoL and psychosocial well-being. The Life Situation Questionnaire can be used by nurses to identify spouses of stroke survivors who are in need of supportive interventions after the stroke event. The results also indicate a need for a continuing development of nurse led support programmes for spouses of stroke patients which also might include individualised support, an empowerment approach, and implementation of coping strategies, in order to facilitate the spouse's roll as an informal caregiver to the stroke patient.