Objective:

Assess the most pressing care needs of surrogates of anoxic brain injury survivors

Background:

Cardiac arrest survivors face immense challenges and must reimagine life after hospital discharge. While research exists on survivors with good neurologic outcome, very little is known about severe anoxic brain injury survivors with poor recovery or their carepartners. These survivors face long-term disability, complex care transitions, high mortality rate, and chronic life-sustaining therapy.

Design/Methods:

Carepartners of severe, anoxic brain injury survivors (discharge modified rankin scale >3, anoxic injury on imaging, or presence of life-sustaining therapy) were enrolled. Carepartners completed validated surveys and semi-structured interviews about psychological sequelae associated with carepartnership. Surveys on symptom burden, quality of life, grief, depression, anxiety, post-traumatic stress, and advance care planning were scored quantitatively and compared to reference populations. Interviews focusing on unmet care needs were audio-recorded, professionally transcribed, double-coded, and analyzed using a conventional content analysis approach. Four coders developed a codebook iteratively with 6 grouping codes and 11 content codes.

Results:

26 carepartners representing 20 survivors completed 54 surveys and 55 interviews including inpatient and nursing home settings. Average age was 57 (range 19-81), 38% black, and 69% female.  At 6 months, surrogates report prolonged grief (39%), post-traumatic stress (56%), caregiver burden, and disagreement with staff (59%) about survivor care goals. We found four themes in interviews: Conflicting values: Surrogates perceive a staff agenda and bias; Relational needs: Surrogates want relationship with staff; Healthcare distrust: Many surrogates experience lasting distrust in healthcare; and Complex Grief: Surrogates experience complex grief towards the survivor.

Conclusions:

Carepartners of severe anoxic brain injury survivors can face enduring, unmet care needs 6 months after injury including prolonged grief, post-traumatic stress, caregiver fatigue, and conflict with staff regarding anoxic brain injury survivorship. Clinical interventions are needed to support carepartnership in severe anoxic brain injury.