To be or not to be? - a caregiver’s question : the lived-experience of a stroke family during the first eighteen months post-stroke

BACKGROUND: Disability following a stroke often requires family, commonly a spouse, to provide care enabling the stroke survivor to return home. Immediate or extended family and friends may help provide direct care, or support the primary caregiver. While family members share the common stroke experience, this is lived within the context of separate lives. Research examining the individual nuances, roles and contribution of family and/or friends forming part of collective stroke networks, has largely been overlooked. AIM: Ethical approval was granted for this New Zealand study which aimed to explore the lived-experience of three stroke family members during the eighteen months following a first-ever stroke. METHODS: Hermeneutic phenomenology guided the study. Informed consent was obtained prior to individual interviews conducted six weeks, twelve months and eighteen months post-stroke. FINDINGS: Three main themes emerged: (i) Being prepared, (ii) Where you stand changes the view and (iii) Relinquishing and reclaiming. Being prepared revealed how family members anticipated the stroke and drew on personal and professional experience in facing the phenomenon. The second theme showed the influence of expectation and positionality on family members’ experiences. Relinquishing and reclaiming identified loss, grief and a quest for equity in the synthesis of competing stroke survivor and caregiver desires. CONCLUSIONS: Familiarity with the caregiving role and experience of unreliable community services led stroke family members to question their ability to continue caregiving following a family member’s first-ever stroke. Caregivers were physically and emotionally spent and rest-home care for the survivor became the only self preserving option. A new caring arrangement was formulated seeking equity for both stroke survivor and caregiver