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Family members' experience with in-hospice health care after severe traumatic brain injury

Traumatic brain injury (TBI) is a leading cause of death and disability worldwide. Individuals who experience a severe TBI commonly experience physical, cognitive, and behavioral deficits, all of which can require in-hospice care in addition to continued support from family members and loved ones. Because these support systems play a critical role in the TBI rehabilitation process, health care providers are motivated to ensure that family members have informative and satisfying experiences with in-hospital health care services.

Currently, little research has investigated family members’ experiences with in-hospice health care for their loved ones who have experienced severe TBI, nor how these experiences relate to rehabilitation outcomes. A group of Norwegian researchers recently addressed this gap by conducting a study of 122 family members of patients with severe TBI. To assess family members’ experiences with health care service for TBI, the researchers administered the Family Experiences of Care Questionnaire after Traumatic Brain Injury (FECQ-TBI). They also collected data about the rehabilitation pathways for the TBI patients themselves. After analyzing the data, the research team found that:

  • Most family members (85%) were generally satisfied with the treatment their loved ones received in hospice care.
  • Family members were more satisfied with health care services during the acute phase of TBI treatment, which typically includes life-saving and -sustaining interventions, than they were with services related to the rehabilitation phase.
  • When patients were transferred to rehabilitation programs that weren’t specialized for TBI treatment, family members reported significantly lower satisfaction with health care services.

In general, family members are happy with the in-hospice care their loved ones receive after sustaining a severe TBI. However, families have indicated dissatisfaction with the rehabilitation phase of TBI treatment, particularly when the intervention program isn’t specialized for TBI-related care. Health care providers may be able to increase family members’ satisfaction with services by providing them with care information upon discharge and by ensuring that TBI patients receive interventions that are specific to their injuries.

Manskow US, Arntzen C, Damsgård E, et al. Family members’ experience with in-hospital health care after severe traumatic brain injury: a national multicenter study. BMC Health Services Research. (December 2018).


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