Journal of Rehabilitation Medicine 51-7 | Page 24

Life satisfaction 6 years after stroke In general, spouses are found to report lower levels of satisfaction with life irrespective of years since stroke (10, 11). The lived experiences of spouses of persons with stroke have been highlighted and have often been found to be stressful, demanding and even a burden (12, 13), while studies on life after stroke for single persons are rare. However, in a prospective study, Wise et al. (14) found marital status to be the strongest predictor of social integration following mild stroke, thus leaving the single person more vulnerable. Furthermore, in a review study McGrath et al. (15) have stressed the importance of including singles in future studies. Thus, in the short term women and men affected by stroke, and their spouses, seem to be at risk of a dissatisfying life with a depleting “Closeness” domain (i.e. aspects of intimacy: family life, partner relation- ship, sexual life). However, less is known about the long-term experiences. Therefore, this study explores 6 years’ experiences of overall life satisfaction and as- pects of “Closeness” in single and married people who have had a stroke and, when applicable, their spouses. 493 followed up at 6 years (Fig. 1). When included, the patients were asked to identify a significant other, e.g. a partner, child, or friend, who would consider participating in the study. Data from persons with stroke and their significant others were collected by research assistants (with experiences in stroke rehabilitation) during home visits; using structured interviews, tests and questionnaires. The interviews started with open- ended questions, thus the research assistants were not aware of the test results. At the 6-year follow-up 166 were deceased, 44 declined to participate, and 18 could not be found. This study was a subgroup analysis of LAS-1 and included all persons with stroke and their spouses (if available) who had taken part in the 1-year and 6-year follow-ups and who had answered a questionnaire on life satisfaction on both occasions. All partici- pants had the same marital status and spouse on both occasions. Marital status was defined as those who had a steady partner relationship, “married stroke participant”, and those without a partner, “single stroke participant”. Ethics All participants received oral and written information about the study and informed consent was obtained. The Regional Ethical Review Board in Stockholm approved the study (no. 2012/428-32). Data collection METHODS Participants and procedures Data were collected from the 1-year and 6-year follow-up of a prospective cohort study of the rehabilitation process after stroke, Life After Stroke phase 1 (LAS-1). Detailed descrip- tion of LAS-1 has been reported elsewhere (16). In short, all patients with a stroke diagnosis who were admitted to Karolin- ska University Hospital in Stockholm, Sweden, between 2006 and 2007 were eligible for inclusion in LAS-1. At baseline, 349 patients were consecutively included, of whom 121 were Inclusion Life After Stroke phase 1 n=349 Deceased, n=55 Declined or lost to follow - up, n= 66 One - year follow - up n =228 Deceased, n=111 Declined or lost to follow - up, n=13 Rejoined, n=17 ( Included in the study but did not participate in the one - year follow- up) Six - year follow - up n=121 Did not answer LiSat at the one-year and/or six-year follow-up, n=49 Included in the study n=72 Fig. 1. Flow-chart of included stroke participants and spouses. Data on experienced life satisfaction were collected using the Life Satisfaction Checklist (LiSat-11) (9). The questionnaire is commonly used to assess life satisfaction after stroke and has been found to be reliable (17). It is a self-report generic questionnaire that assesses life satisfaction with the global item “Life as a whole” and 10 domain-specific items. Answering alternatives range from 1 (very dissatisfied) to 6 (very satisfied). In the present study, the overall item “Life as a whole” and the domain “Closeness”, reflecting aspects of intimacy, (“Family life”, “Partner relationship” and “Sexual life”) were included and analysed as recommended (9) by dichotomizing the answers into not satisfied (alternatives 1–4) and satisfied (alternatives 5 and 6). Notably, these items are not exclusively for those having a family life and/or partner relation. Thus, single people were also asked to judge their satisfaction within these areas of life. Data on gender, age (all participants) and work status (per- sons with stroke) were collected during interviews. The Barthel Index (BI) (18) was used to categorize stroke severity at stroke onset. The BI includes 10 personal care and mobility activities with a score range of 0–100, where a higher score reflects a greater degree of independence. A score ≤ 14 was classified as a severe stroke, 15–49 as moderate, and ≥ 50 as mild (19). The BI has shown good agreement with other measures of stroke severity (19). Open-ended questions were used to collect data from persons who had had stroke. These questions addressed how they ma- naged their daily activities after the stroke and what strategies they used to handle problems as the result of the stroke. The questions were framed as follows: “(1a) How do you think your daily activities work for you today? (1b) Is there anything that has changed (mention 3 examples of activities that have become harder to perform)? (2) Do you have any thoughts about how this (activities that have changed) might work better, such as how you could solve the problem?” A similar open-ended question was used to collect data from spouses. The question addressed how their partner’s stroke changed their daily life. J Rehabil Med 51, 2019