Understanding Family Involvement in Adult Inpatient Traumatic Brain Injury Rehabilitation

• Main Author: Eady, Kaylee
• Other Authors: Egan, Mary
• Language: en
• Published: Université d'Ottawa / University of Ottawa 2017
• Subjects: Adult; Family; Inpatients; Qualitative Research; Rehabilitation; Traumatic Brain Injuries
• Online Access: http://hdl.handle.net/10393/35838; http://dx.doi.org/10.20381/ruor-20121

Traumatic brain injury is a substantial cause of disability worldwide; recovery is a long-term, intensive process. Patients with traumatic brain injury are admitted to inpatient rehabilitation with the goal of preventing disability and the need for long-term care as well as promoting patient independence. Acknowledging that traumatic brain injury also affects the family, much of the literature focuses on the well-being of families and their needs, bringing attention to family functioning, resilience, and psychosocial well-being. Recognizing the important role of families in health care, Canadian healthcare institutions espouse family-centred philosophy. Not to mention, the resulting impairments from traumatic brain injury and the complex nature of inpatient rehabilitation can also lead to the involvement of families in this process. However, we do not yet fully understand how families are involved in adult inpatient traumatic brain injury rehabilitation. Given the adoption of a family-centred philosophy as well as the potential benefits of family-centred care for patient and family outcomes, it is important to understand this involvement to guide the provision of family-centred health and rehabilitation services. This study is the first step in a program of research that is devoted to understanding family involvement in adult inpatient traumatic brain injury rehabilitation. I used an interpretive qualitative approach with a two-phased sequential design to elucidate how families were involved in the inpatient rehabilitation process. I conducted one-on-one semi-structured interviews with six patients with TBI, four family members, and 10 healthcare professionals followed by observations on the inpatient Acquired Brain Injury ward at a Canadian adult rehabilitation centre. In Phase 1 interviews, both the patients and family members described family involvement as family members being with and supporting the patients, informing other family members as well as the healthcare professionals and keeping themselves informed, helping the patients to make decisions, and participating in care and therapy. The healthcare professionals similarly described family members being with and supporting the patients; however, they conversely illustrated family members’ involvement as providing information to and receiving information from the healthcare professionals as well as making decisions when required or deemed necessary by them, and learning care and therapy. While the observation findings supported the patients’, family members’, and healthcare professionals’ perceptions that family members support the patients by being present and spending time with them, they highlighted the healthcare professional-led nature of the rehabilitation process in the inpatient setting in relation to information sharing, decision making, and care and therapy. They also illuminated the potential impact of the ward environment on family involvement. This study was the first to explore family involvement with this adult patient population in the inpatient rehabilitation setting from the perspectives of patients, family members, and healthcare professionals as well as through direct observation. It revealed that patients and family members had different understandings than healthcare professionals of the ways in which families were involved. Given the adoption of a family-centred philosophy, we need to understand how to operationalize it in this type of adult setting and close the gap between theory and practice.