Body, coping and self-identity. A qualitative 5-year follow-up study of stroke

Abstract

Stroke survivors suffered considerable ongoing and changing difficulties in relation to disability, self-perception and to coping with a new life. This continuous process of change could be seen to drain their energy. The study shows that many survivors live a more home-centred life with fewer social relations and less active participation in their community. This can entail the risk of depression and loneliness. The study also shows, however, that adopting an optimistic approach to life can lead to continued learning about abilities and limitations, to the development of new skills and to the fashioning of a new self-identity.

The experience of stroke survivors three months after being discharged home: A phenomenological investigation

“…Hilton's study 15 was conducted 12 years ago and enrolled only women who had survived from stroke one year before. In the other phenomenological study, 16 the themes were: body experiences, coping, and altered life. The results of this study are also somewhat similar to our findings in relation to the themes of a deeply changed life and slowed lives, since changes and slowness in our participants sometimes referred to changes of the body.…”

“…Prior to this time, they are more likely to be focused only on the meaning of physical disability, and only later can they also focus on the meaning of other aspects of daily life and family interactions 25 Other authors have also investigated the lived experiences of stroke survivors with qualitative methods but we found only two published studies in the last 12 years that used a phenomenological perspective to uncover the meaning of the 'whole' experience of stroke. 15,16 The first study 15 was conducted with five female survivors one year after the stroke and the investigators found the overarching theme of transformations which was interwoven with six other themes, which were dawning awareness of self as disabled, life and suffering through inexorable losses, quest for self, adaptation to change, existential reestablishment of self, reconciliation and re-engagement. These themes are similar to the experiences our stroke survivors described in the themes of a deeply changed life and slowed lives.…”

“…[8][9][10] Although many studies have been conducted on stroke survivors' experiences, few studies have focused on the lived experience of patients when they return home. [11][12][13][14][15][16] In addition, although many advances have been made in stroke rehabilitation which may have an impact on how stroke is perceived by survivors, [17][18][19] few studies have been conducted in the last decade on these perceptions. [11][12][13] Existing research has been conducted with several qualitative methodologies and sometimes focused on the specific experience of patients, for example, transition from hospital to home and the consequences of stroke, 11 the experiences related to basic care needs during in-hospital stay (e.g.…”

“…elimination, personal hygiene, eating), 20 the experience of eating difficulties, 21 apraxia, 22 depression, 23 returning to work, 24 and sometimes these studies were gender specific, enrolling only female people. 15 In addition, investigators 12,14,16 have included patients who differed in terms of time from their discharge home, which may limit the understanding of stroke survivors' experience. In fact, stroke survivors physical and psychological status changes over time 16 and this might influence the meaning which patients attribute to their condition.…”

“…15 In addition, investigators 12,14,16 have included patients who differed in terms of time from their discharge home, which may limit the understanding of stroke survivors' experience. In fact, stroke survivors physical and psychological status changes over time 16 and this might influence the meaning which patients attribute to their condition. Rachpukdee et al 25 recently found that predictors of quality of life after stroke change between one month and three months from when patients are discharged home.…”