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

Abstract

Objective: The purpose of this article is to identify, from a long-term perspective, stroke survivors’ self-identity, their views of any associated disabilities and how they manage their lives after stroke. Methods: The interviews and analyses were conducted using a phenomenological qualitative method. A total of 10 men and 5 women, aged 42–84, participated. All had suffered first-time stroke 5 years earlier. Results: After 5 years, participants had greater acceptance of their situation compared with immediately after participating in the rehabilitation programme. However, they described how they still had to deal with the consequences of stroke. They had suffered further illnesses and additions to side effects of the stroke. In dealing with their disabilities and changes to self-identity and life patterns, they seemed to be in a continuous process of change that never truly stabilised. They coped with this continuous process in at least two different ways, including resignation or personal growth. Conclusion: 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.

Implications for Rehabilitation

• This study suggests that stroke survivors should be offered individualised rehabilitation programmes that address not only physical activities but also psychological circumstances and existential issues. It is recommended that the interventions offered to the stroke survivor are unfolded through a pedagogical approach, so the individuals do not feel alienated or need to struggle in isolation. The programme should promote the individual’s motivation, the sense of being able to cope and an optimistic view of life.

• There is a need for further research focusing on identifying the factors that facilitate the individual’s positive approach to life and optimism. There is also the need to examine a variety of approaches to rehabilitation that emphasise empowerment and self-efficacy for stroke individuals in a variety of phases of rehabilitation and with various degrees of disability.

• Body
• coping
• experience
• identity
• stroke

Acknowledgements

Thanks to Hammel Neurorehabilitation and Research Centre for the support to complete this article. A special thank goes to the individuals who took the time and trouble to participate in this research.