Caregiver burden in Danish family members of patients with severe brain injury: The chronic phase

OBJECTIVE: To investigate caregiver burden and factors associated with caregiver burden among family members of patients with severe brain injury in the chronic phase. Additionally, the study aimed at investigating differences in burden between parents and spouses.

METHODS: Forty-four Danish caregivers of patients with severe brain injury were contacted 3-6 years post-injury and asked to complete a measure of caregiver burden.

RESULTS: Medium, high and low levels of burden were observed in 45%, 16% and 39% of family members, respectively. Higher burden was seen in caregivers of patients with more severe injuries, who spent more time on caregiving and reported more unmet needs. Overall, spouses spent significantly more time taking care of their family member than parents and reported higher levels of burden.

CONCLUSIONS: The findings emphasized the continuing consequences of brain injury on not only the individual with the brain injury, but also on the surrounding family. Spouses, caregivers of patients with more severe injuries, who spent more time on caregiving and reported more unmet needs experienced higher levels of burden in the chronic phase. Future intervention programmes should target such specific caregivers, who might need more support and long-lasting help.