Needs, priorities, and desired rehabilitation outcomes of family members of young adults who have had a stroke: findings from a phenomenological study.
This study explored the experience of stroke from the perspective of family members of young adults who have had a stroke. Gaining understanding of the short, medium and long-term needs and desired rehabilitation outcomes of family members assisted identification of appropriate family-centred multidisciplinary rehabilitation interventions. A qualitative approach based on Merleau-Ponty's existential phenomenology enabled exploration of family members' experience of stroke. Eleven family members, including parents, spouses, children and siblings, participated in 24 interviews over 2 years. A subsequent iterative process of critical reflection was used to identify family-centred needs, priorities and associated rehabilitation outcomes. Within a thematic framework, family members' experience was conceptualised as Disruption of Temporal Being. Against this overarching theme or (back)ground, figural themes were identified: Uncertainty, Disrupted and Altered Relationships, and Situatedness. In addition, sixteen short, medium and long-term effects of stroke were identified along with associated family-centred needs and rehabilitation outcomes. An empathetic understanding of the experience of stroke from the perspective of family members, combined with research evidence and professional expertise enables the multidisciplinary rehabilitation team to deliver tailored interventions based on identified needs and priorities, and negotiation of mutually agreed goals. • Following stroke in a young adult, families' needs, priorities and associated rehabilitation outcomes change over time; rehabilitation services should reflect this dynamic process. • To deliver family-centred care, rehabilitation professionals need to develop a deeper understanding of the experience of families affected by stroke, gained from qualitative research findings and from their own reflective practice. • Gaining understanding of the experience of family members of young adults who have had a stroke will enable health professionals to consider how they may improve practice and enhance service provision to ensure delivery of effective, family-centred interventions. • The table of family-centred needs and outcomes can be used by members of the multidisciplinary stroke rehabilitation team in conjunction with their own knowledge, experience and resources to inform family-centred practice.