The experience of being a middle-aged close relative of a person who has suffered a stroke, 1 year after discharge from a rehabilitation clinic: A qualitative study

Background: Living in close emotional and physical proximity to a person who has suffered a stroke may alter almost every aspect of daily living and will inevitably impact family life. Age seems to be a factor in the experiences of stroke sufferers' close relatives after the stroke. Objectives: This study aimed to illuminate the experience of being a middle-aged close relative of a person who has suffered a stroke; 1 year after the stroke sufferer's discharge from a rehabilitation clinic. Participants: Nine middle-aged close relatives of persons with a confirmed diagnosis of a first-time stroke were consecutively included in the study and interviewed. Methods: The narrative interviews were audio-taped, transcribed verbatim and analyzed using a thematic content analysis. The study was part of a longitudinal study. Results: Four themes emerged from the data, intertwined and in conflict with one another. A turning point was reached, and the inevitability of an altered future became self-evident, so much so that the middle-aged close relatives felt forced to accept and become reconciled to a changed way of living, even if feelings of grief from loss were still present. The middle-aged close relatives' process of coming to awareness and recognition of their own needs was part of a complex interplay of emotions, in which they learned to leave feelings of shame and guilt behind. They experienced movement from self-denial to self-recognition in their search for their own well-being and the recovery of their strength for a functioning family life. Even if they experienced a greater sense of freedom, they still face living life within limits. A significant challenge appears to be the effects of the personality changes among the person with a stroke, and the resulting sense of being an outsider. Relatives struggled with health care providers for visibility and confirmation. Their experiences were ones of standing alone, outside a closing door to the rehabilitation. Their ability to work, the benefits of functioning home care, and support from their family helped them through these challenges. Conclusion: This study highlights the middle-aged relatives' realization that they will live an inevitability altered future. Individually, the stroke sufferer's relatives need support in their relationships within the family for emotional confirmation and to help them recognize and verbalize their needs without feeling guilt; gaining these supportive factors may help the relatives to recover their sense of well-being and give strength for a future, properly functioning family life. (C) 2009 Elsevier Ltd. All rights reserved.