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

• Published in: Disability and health journal 2019-04, Vol.12 (2), p.257-262
• Main Authors: Bourke, John A, Nunnerley, Joanne L, Sullivan, Martin, Derrett, Sarah
• Format: Article
• Language: English
• Subjects: Adolescent; Adult; Allied Health Personnel; Caregivers; Communication; Disabled Persons - rehabilitation; Family; Female; Home Care Services; Home Health Aides; Humans; Interpersonal Relations; Longitudinal Studies; Male; Middle Aged; New Zealand; Patient Discharge; Qualitative Research; Residence Characteristics; Social Support; Spinal Cord Injuries - rehabilitation; Young Adult
• ISSN: 1936-6574; 1876-7583
• DOI: 10.1016/j.dhjo.2018.09.001

Spinal Cord Injury (SCI) can have substantial consequences for the injured person, and also their family/whānau (Māori 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. This study considers how SCI can impact relationships during the transition from spinal rehabilitation units to home. 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. Three themes captured participants' relationship experiences during the time of transition: Role Disruption, examines how participants' pre-SCI family/whānau 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 whānau. 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/whānau 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. 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.