Patterns of change and stability in caregiver burden and life satisfaction from 1 to 2 years after severe traumatic brain injury: A Norwegian longitudinal study

Article type: Research Article

Authors: Manskow, Unn Sollid^{a; b; *} | Friborg, Oddgeir^c | Røe, Cecilie^{d; e} | Braine, Mary^f | Damsgard, Elin^b | Anke, Audny^{a; g}

Affiliations: [a] Department of Rehabilitation, University Hospital of North Norway, Tromso, Norway | [b] Faculty of Health Sciences, Department of Health and Care Sciences, UiT The Arctic University of Norway, Tromsø, Norway | [c] Faculty of Health Sciences, Department of Psychology, UiT The Arctic University of Norway, Tromsø, Norway | [d] Department of Physical Medicine and Rehabilitation, Oslo University Hospital, Oslo, Norway | [e] Institute of Health and Society, Research Centre for Habilitation and Rehabilitation Models and Services (CHARM), Faculty of Medicine, University of Oslo, Oslo, Norway | [f] School of Nursing and Midwifery, Faculty of Health and Social Care, University of Salford, Salford, UK | [g] Faculty of Health Sciences, Department of Clinical Medicine, The Arctic University of Norway, Tromsø, Norway

Correspondence: [*] Address for correspondence: Unn Sollid Manskow, Department of Rehabilitation, University Hospital of North Norway, Sykehusvegen 38, 9038 Tromsø, Norway. Tel.: +47 45423793; E-mail: [email protected].

Abstract: OBJECTIVE: To assess burden and life satisfaction in family members of patients with severe traumatic brain injury (sTBI) at 1 and 2 years post-injury, examine if change in burden can be predicted by family member and patient demographics, patient’s functional status, family members social network or level of burden at 1 year. METHODS: Prospective national multicenter study. Self-report from family members, patient data collected from a national cohort study on patients with sTBI. 80 family members participated. MAIN OUTCOME MEASURE: The Caregiver Burden Scale (CBS), life satisfaction. RESULTS: Total burden increased between years 1 and 2 post-injury (P = 0.04). Thirty percent of the family members reported an increased burden, 55% were stable, and 15% had a decrease in burden between the two follow-up times. Logistic regression analyses revealed that experiencing loneliness was an independent predictor of increased burden from 1 to 2 years post-injury (OR = 4.35, P < 0.05). Life Satisfaction was lower at the 2 year follow-up than at 1 year (p = 0.03). CONCLUSIONS: The results demonstrate a need for long-term follow-up of patients and family members that focuses on professional support to relieve burden and risk of loneliness or social isolation. This group may benefit from additional follow-up interventions tailored to their needs.

Keywords: Caregiver burden, life satisfaction, traumatic brain injury, social network

DOI: 10.3233/NRE-161406

Journal: NeuroRehabilitation, vol. 40, no. 2, pp. 211-222, 2017