It’s a family experience – improving patient and family functioning after traumatic brain injury

Abstract

Background: Traumatic brain injury (TBI) constitutes a challenge for the entire family. An increased focus on family functioning and response after TBI has produced an international consensus that family should be an integral part of the rehabilitation process. However, evidence-based knowledge regarding the effectiveness of family-centered interventions in the TBI rehabilitation field is limited, and additional controlled studies within the context of family systems are needed. This thesis describes a research project of a TBI family intervention carried out at Dept. Physical Medicine and Rehabilitation at Oslo University Hospital (OUH) and conducted in collaboration with the Norwegian municipal health care service. Aims: This thesis aims to (1) assess the feasibility of a theory-based, manualized family intervention in a Norwegian context and study procedures in preparation of a randomized controlled trial (paper I), (2) to describe aspects of mental health and family functioning, and factors associated with mental health in adults with mild to severe TBI and their family members (paper II), and (3) to assess the effectiveness of the theory-based family intervention in improving individual and family functioning among adults with mild to severe TBI and their family members (paper III). Patients and methods: The feasibility study (paper I) included two individuals with TBI and their families, in total six participants, recruited from a community-based rehabilitation service. Feasibility was evaluated based on pre-defined success criteria, namely the families’ willingness and ability to attend the family intervention, the need for cultural adjustment to the Norwegian version of the family intervention, the mode of collaboration with the municipal health professionals, and the data collection methods. The cross-sectional study (paper II) and the randomized controlled trial (RCT) (paper III) included 61 patients (54% women) with mild to severe TBI and 63 family members (52% women) recruited from a TBI outpatient clinic at Oslo University Hospital (OUH). The families were randomly assigned to the intervention group (n = 30 families) and the control group (n = 31 families). Outcomes were assessed with patient-reported outcome measures (PROMs) at the start of treatment and at 2-month and 8-month follow-up appointments. Primary PROMs were mental health-related quality of life (HRQL) and caregiver burden. Secondary PROMs were family functioning, communication, and satisfaction, and TBI-specific HRQL. Several additional PROMs – selfefficacy, resilience, general health, and symptoms of depression and anxiety – were applied. RCT study arms: The patients in both the intervention group and the control group received follow-ups at the specialized TBI outpatient clinic at OUH. In addition, the families in the intervention group were supplied with a manualized, eight-session family intervention, delivered to each family separately. In the control group, the family members were invited to attend a single 2.5 h caregiver group session. Results: Paper I: The attendance rate for the intervention sessions (98%) and the home task compliance rate (100%) were high. Overall, the families described the intervention topics as relevant and recognizable. Both families and the collaborating municipal clinicians experienced some logistical challenges related to session scheduling. The leadership structure of the sessions and mode of collaboration with municipal health professionals functioned well, and the PROMs were answered within the given timeframe of 70 min with < 10% missing data variables. Paper II: The data collected at the first assessment point in the randomized controlled trial, a median 49 weeks post-injury, showed that 82% of patients had sustained a mild TBI. Most family members (92%) were patients’ partners or spouses. The patients reported significantly worse mental HRQL, general health, depression, resilience, and self-efficacy than the family members. Fifty-seven percent of the family members reported mild to moderate symptoms of depression. Both the patients and the family members reported healthy family functioning, high levels of family communication, and moderate family satisfaction. Gender, symptoms of depression and anxiety, and resilience were significantly associated with the mental HRQL in patients and family members, and explained 56% of the variance in mental HRQL. Paper III: No significant between-group differences in mental HRQL, TBI specific HRQL, caregiver burden, or family functioning, communication, and satisfaction were evident at any assessment point in the RCT. Significant within-group improvements in mental HRQL, caregiver burden, and family functioning, communication, and satisfaction were observed in the intervention group from start of treatment to the 2- months follow-up (i.e. intervention period), whereas the patients in the control group showed significant improvements in TBI-specific HRQL during the same period. Conclusion: Paper I: With minor adjustments and a pragmatic approach, the Norwegian version the eight-session family intervention and the study procedures of the planned RCT were feasible. Papers II and III: The patients bore the main disease burden at start of treatment in the RCT, but the family members reported some depressive symptoms. The overall family functioning was healthy. Being female, having symptoms of depression and anxiety, and having lower levels of resilience were significantly associated with reduced mental HRQL in patients and family members. There was no extra benefit in receiving an eight-session family intervention in addition to outpatient follow-ups for the patients, although it may have accelerated the recovery process during the intervention period.