The Long-Term Experience of Family Life After Stroke

Abstract

Stroke is a life-threatening and disabling illness known to have a significant impact on families. The purpose of this study was to illuminate the long-term experience of family life after stroke of stroke survivors and their spouses and children, particularly regarding marital and parent-child relationships. Thirty-seven narrative interviews were conducted with stroke survivors and their spouses and adult children who were minors at onset of the illness. A qualitative approach inspired by Gadamer's hermeneutic and van Manen's phenomenological understanding of lived experience was used. The analysis revealed four themes: the family as a lifebuoy, absent presence, broken foundations, and finding a new marital path. Lack of communication and altered roles and relationships endangered marital equilibrium and parent-child relationships after stroke. This study highlighted the need for professional family support as families were unprepared for the life changes that occurred. Nurses and other healthcare workers should examine family relationships and communication patterns and view the family as a unit composed of unique persons with different needs. Further research on the experiences of stroke survivors' children seems urgent.

The everyday life of adult family members of working aged survivors of stroke during the first year after the stroke – an integrative review

“…Stroke patients and all family members were faced with enormous challenges when they moved forward through three phases: the crisis caused by stroke, expectations of rehabilitation of the patient and the crisis caused by discharge to home [31] . Family members were sure that their actions helped the sick person to rehabilitate, but they expressed that they also needed emotional and concrete support from others [25] . A turning point was reached when the patient was discharged, and the responsibility for care fell on the shoulders of the family member [23] .…”

“…The other family members were a support network. The changes in the stroke patient`s personality sometimes made the family member feel like an outsider in the situation [23][24][25][30][31][32][33][34] . Family members related that during the course of stroke it was very difficult to care for their loved one.…”

“…They got strength from moments they felt they were succeeding in the mission, and felt as if they were living a normal life. Taking part in the care helped family members to feel important and connected to the patient during the acute phase [25,27] . Already at the beginning of the situation family members were aware of the changing life situation and that they must be strong in this changed situation, but it took a long time before they understood the lifelong influences of stroke [23,29,30] .…”

“…New hobbies helped them to find acquaintances and friends, which broadened their living space. A history of a strong and long lasting marriage had an important impact on the success of the relationship after the stroke [25] .…”

“…Role changes with couples caused fear and insecurity to some of the spouses. Some of them gave up their work which influenced the economic situation of the family [25] . Young female family members who were caregivers of their spouses shared their experiences and gave support to each other through the Internet during the first year after the stroke of the loved one.…”