Beyond grief: Quantifying bereavement needs of rural family caregivers

Family caregivers (FCGs) may experience numerous psychosocial and practical challenges with interpersonal relationships, mental health, and finances both before and after their care recipient (CR) dies. The specific challenges affecting rural FCGs who often have limited access to palliative care services, transitional care, and other community resources are not well understood. The purpose of this paper is to quantify the challenges rural FCGs experienced immediately before the death of a CR and continuing into the bereavement period.

A secondary analysis of data from a randomized controlled trial was conducted. The 8-week intervention included video visits between a palliative care research nurse and FCGs caring for someone with a life-limiting illness. Data were from structured interviews during nurse visits with FCGs in the intervention arm whose CR died during the intervention period.

Ninety (41.8%) of the 215 FCGs experienced the death of their CR. The majority of FCGs were female (58.9%), White (97.5%), spouses or partners (55.6%) and lived with the CR (66.7%). Most FCGs (84%) continued with intervention visits by the study nurse after the CR's death. Visits resumed on average 7.2 days post-death. The majority of FCGs experienced challenges with grief/coping skills (56%) and interpersonal relationships/support systems (52%) both pre- and post-death of the CR. FCGs also experienced practical challenges with income/finance, housing, and communication with community resources both pre-and post-death.

Bereavement support should extend beyond a focus on grief to include practical challenges experienced by FCGs. Because challenges experienced in the bereavement period often begin before a CR's death, there is benefit in continuity of FCG support provided by a known clinician from pre- to post-death. When given an option, many rural FCGs are open to bereavement support as early as a week after the death of a CR.