Relationships and the transition from spinal units to community for people with a first spinal cord injury: A New Zealand qualitative study

Background: Spinal Cord Injury (SCI) can have substantial consequences for the injured person, and also their family/whanau (Maori word for extended family and social networks). Family members can adopt either formal or informal care roles when the person returns home, and people with high-level care requirements may also need non-family support workers. Objective: This study considers how SCI can impact relationships during the transition from spinal rehabilitation units to home. Method: Nineteen SCI participants from the New Zealand longitudinal study were interviewed six months post-discharge from either of New Zealand's two spinal units. Data were analysed using the framework method. Results: Three themes captured participants' relationship experiences during the time of transition: Role Disruption, examines how participants' pre-SCI family/whanau relationships underwent change as previously understood parameters of engagement were disrupted. A Balancing Act, explores the challenge of renegotiating previously-understood parameters between participants and whanau. The Stranger in My/ Our Room focuses on how the relationship between participants and support workers was (necessarily) new to the participant and their family/whanau who now had an 'outsider' episodically or continuously in their home. The specifics of 'their' relationship was also new to the support worker; and negotiating the parameters of this relationship could only occur on transition home. Conclusion: SCI necessitates a renegotiation of relationships and, for some, also involves the negotiation of a new type of relationship with support workers. Understanding the ways a SCI may affect relationships can enable rehabilitation services to best support people with SCI and their family to prepare for their transition home. (C) 2018 Elsevier Inc. All rights reserved.