Caregivers to patients with severe traumatic brain injury. A national prospective study on caregiver burden, life satisfaction and health care experiences.

Abstract

Background: Severe traumatic brain injury (TBI) is a major public health challenge as it often has huge consequences for the patient and the family for a long time after the injury. Objective: Assess caregiver burden and predictors of burden 1year post injury, investigate change and stability of caregiver burden and life satisfaction over time. Develop a validated tool to assess family member’s in-hospital health care experiences. Methods: A Norwegian prospective cohort multicenter study including 122 caregivers to patients with severe TBI. A structured questionnaire were used to assess caregiver burden, change in burden and life satisfaction over time and predictors of burden 1 and 2 years post injury. The Family Experiences of in-hospital Care Questionnaire for family members of patients with severe Traumatic Brain Injury (FECQ-TBI) were developed. Results: Paper I and II reported a moderate to high caregiver burden up to 2 years post injury. A poor social network, feeling lonely and taking care of a patient with more functional problems were significant predictors of a high burden. A significantly higher caregiver burden and lower life satisfaction at 2 years compared to 1 year post-injury were found. Paper III describes the development of the FECQ-TBI. Principal component analysis extracted six subscales: acute organization and information, rehabilitation organization, rehabilitation information, discharge, hospital facilities-patient and hospital facilities-family. All subscales had Cronbach´s alpha coefficients > 0.80, confirming the internal consistency. Hypothesis testing supported construct validity. Conclusion: Caregivers of patients with severe TBI experiences a considerable caregiver burden long time post injury.The FECQ-TBI showed good psychometric properties and construct validity, supporting the use of the FEQC-TBI to assess quality of in-hospital care from a family perspective. The results may have clinical implications as improved family-centered acute and rehabilitative care and a long-term follow-up can prevent the perceived caregiver burden over time.