Journal of Rehabilitation Medicine 51-7 | Page 23

J Rehabil Med 2019; 51: 492–498 ORIGINAL REPORT CLOSENESS AND LIFE SATISFACTION AFTER SIX YEARS FOR PERSONS WITH STROKE AND SPOUSES Kerstin S. FUGL-MEYER, PhD 1,2,3 , Marie I. NILSSON, PhD 1,2 , Lena VON KOCH, PhD 1,2 and Charlotte YTTERBERG, PhD 1,2 From the 1 Department of Neurobiology, Care Science and Society, Karolinska Institutet, Huddinge, 2 Function Allied Health Professionals, Karolinska University Hospital, and 3 Stockholm Sjukhem Foundation, Stockholm, Sweden Objective: To explore long-term experiences of satis- faction with life in persons with stroke and spouses. Design: This prospective cohort-study collected data on life satisfaction 1 and 6 years after stroke using the Life Satisfaction Checklist; focusing on “Life as a whole” and the domain “Closeness” (“Family life”, “Partner relationship”, “Sexual life”). Open-ended questions were added to illustrate changes in daily life. Subjects: A total of 72 stroke participants (24 sing- les, 48 married) and 24 spouses. Most of the stroke participants were men with a mild stroke. Median age for persons with stroke and spouses was 65 years. Results: All groups (singles/married stroke partici- pants, spouses) experienced changes in satisfaction regarding “Closeness”, and most often these chan- ges were perceived as negative. The item “Sexual life” had the lowest proportion of satisfied parti- cipants. After 6 years, 58% of singles and 78% of married stroke participants were satisfied with “Life as a whole”. The proportion of satisfied spouses was 41%. Conclusion: For the vast majority of people who have had a stroke and their spouses, long-term satisfac- tion with aspects of “Closeness” decline. The results suggest a need to develop, evaluate and implement programmes that support satisfaction with the dif- ferent aspects of “Closeness”. Key words: stroke; stroke rehabilitation; satisfaction; perso- nal satisfaction; sexuality. Accepted May 13, 2019; Epub ahead of print May 24, 2019 J Rehabil Med 2019; 51: 492–498 Correspondence address: Kerstin Fugl-Meyer, Department of Neuro- biology, Care Science and Society, Karolinska Institutet, Alfred Nobels allé 23, D2, 141 83 Huddinge, Sweden. E-mail: Kerstin.sjogren.fugl- [email protected] T o suffer a stroke is demanding for individuals and their close family, even when the stroke is clas- sified as mild (1–3). Impairments will often lead to unwanted activity limitations and/or maladaptation, or difficulties in interaction with others. Important tasks for stroke rehabilitation include intervention strategies that support the patient and spouse/family to re-orientate themselves towards their new life situation. That is, a life in which one can experience oneself as a person in health with capacity, within the environment, LAY ABSTRACT The aim of this study was to explore long-term expe- riences of satisfaction with life in persons with stroke and spouses. Data were collected 1 and 6 years after stroke; focusing on “Life as a whole” and the domain “Closeness” (“Family life”, “Partner relationship”, “Sex- ual life”). A total of 72 persons with stroke (24 singles, 48 married) and 24 spouses participated. Most of the stroke participants were men. All groups (singles/mar- ried stroke participants, spouses) experienced changes in satisfaction regarding “Closeness” and most of these perceived as negative. “Sexual life” had the lowest pro- portion of satisfied participants. After 6 years, 58% of singles, 78% of married stroke participants and 41% of spouses were satisfied with “Life as a whole”. In con- clusion, for the majority of people with stroke and their spouses, long-term satisfaction with aspects of “Clo- seness” declines. The results suggest a need to deve- lop, evaluate and implement programmes that support satisfaction with the different aspects of “Closeness”. to act and respond in ways that support ones’ goals and aspirations (4, 5); thus, being able to achieve satisfac- tion with life as a whole. Focusing on life satisfaction, a concept characterized by the contentment a person derives from a certain domain of life or from life as a whole, can be one strategy in rehabilitation (5). Most studies on satisfaction with life after stroke are performed within 1 year, and longer follow-ups and longitudinal studies are quite uncommon. Findings show that, after a year, people affected by stroke report their overall life satisfaction to be between 40% (6) and 50% (1, 7). With time, life satisfaction may improve, as reported in a 3-year follow-up investigation of persons with stroke by Boosman et al. (8). However, studies with longer follow-ups are scarce, but are needed to better understand life satisfaction after stroke. Experienced satisfaction with aspects of intimacy, i.e. family life, partner relationship and sexual life, a domain labelled “Closeness” (9), has been found to be closely associated with overall life satisfaction. Several studies have found that the impact of stroke on these 3 domains of life is problematic and distressing (2, 3). The majority of both affected patients and spouses regard family life and sexual life as unsatisfactory (2). There are, however, large variations; for example, ne- gative impact regarding family life has been reported to vary between 5% and 54%. This is an open access article under the CC BY-NC license. www.medicaljournals.se/jrm doi: 10.2340/16501977-2566 Journal Compilation © 2019 Foundation of Rehabilitation Information. ISSN 1650-1977