To be or not to be? A caregiver's question: the lived experience of a stroke family during the first 18 months poststroke

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The effects of stroke are variable, and recovery depends on stroke severity. Between 50% and 70% of stroke survivors will regain functional independence 1. For those experiencing permanent disability, informal caregivers are pivotal in enabling survivors to return home. Possibly due to caregiving demands, in conjunction with limited caregiver ability, poor survivor function or a deterioration in the stroke survivor's condition 2, 20% of stroke survivors will require institutional care 3 months poststroke 1.
Worldwide, one in six people will experience a stroke 4. In New Zealand, sixty‐thousand stroke survivors depend on family or friends for assistance 5. The social and economic importance of these caregivers is recognised by government policies that provide support, resources and funding for caregivers 6. However, theoretical and actual community services are not always congruent 7. In order for health, support and funding agencies to deliver appropriate services, who stroke caregivers are, what they experience and need, must be understood.
Becoming and living as a stroke family occurs without deliberation. Stroke is experienced within the context of each family member's daily life, impacting individual experiences, roles and contributions. Most stroke family research focuses on spousal caregivers, commonly the stroke survivor's wife 8. Where nonspousal family members and friends are included in studies, there is a tendency to homogenise participants' experiences obscuring the influence of relationship, personal and contextual factors 10. Glimpses of peripheral family and friends, who form part of caregiving networks, can be seen at the fringes of the literature 12. The experiences of these individuals need to be brought into focus. Stroke family studies providing multiple family members' perspectives have begun to emerge 13. Despite the stroke family journey being a dynamic one 14, just one longitudinal study was identified that examined the multi‐perspective experiences of stroke family members, however, this was limited to the first 6 months poststroke 15. Our study aimed to extend these findings by elucidating the lived experiences of three members of a nonbiological stroke family during the first 18 months poststroke.

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