Purpose: This scoping review was conducted to synthesize existing literature into a map of the common needs of families caring for patients with traumatic brain injury (TBI) at home.
Materials and methods: A systematic search of studies published between January 2012 and December 2022 was conducted across databases. The selected studies reported the needs or unmet needs of patients with TBI and/or their family caregivers (FCs).
Results: A total of 12 publications were identified. The results suggest that the common needs of families caring for patients with TBI at home include: information about TBI as a disease; information about the continuum of TBI healthcare services; information about adaptive technologies; education and skilling of FCs; psychological support and counseling; physical and occupational therapy services; follow-up care and transitional care management; respite care; peer support; financial assistance, advocacy, and legal services; emotional support from the family and community; and assistance with physical patient care and instrumental activities of daily living.
Conclusion: The mapped needs provide insight into supportive interventions required to enhance the health outcomes of patients with TBI and their families during and after rehabilitation. The needs also highlight directions for research and healthcare services for patients with TBI.
Keywords: Family; caregiving burden; family caregivers; needs; traumatic brain injury; unmet needs.
The families caring for patients with traumatic brain injury at home end up living in situations characterized by multiple unmet needs, and these can be a source of poor health outcomes for the family and patients with traumatic brain injury.The identified needs of families caring for patients with traumatic brain injury reveal gaps in the discharge planning and care coordination after acute and rehabilitation care.Addressing these needs requires a multidisciplinary approach and planning.Interventions using a holistic approach to address the identified needs may significantly improve the health outcomes of patients with traumatic brain injury and their families.