Family caregiving research: Reflecting on the past to inform the future

OBJECTIVE: Family caregiving research has evolved since its inception in the late 1970s. The objective of this brief report was to summarize the research areas and findings to date with the goal of highlighting directions for future research. DESIGN: Narrative review. SETTING: Not applicable PARTICIPANTS: Published scientific articles in neurological populations including spinal cord injury, traumatic brain injury, and stroke. INTERVENTIONS: Not applicable OUTCOME MEASURES: Not applicable RESULTS: Caregiving research began with a description of the impact of providing care on caregiver health and wellbeing. Intervention research followed to support caregivers in their role and improve caregiving outcomes. Recent reviews conclude a “one size fits all” intervention will not be sufficient to support caregivers. New research suggests caregivers have different patterns of adjustment to the caregiving role highlighting heterogeneity in the caregiving population. Research is also advancing to support patients and families as they transition across care environments by enhancing the timing of intervention delivery. Health care systems do not routinely adopt evidence-based caregiver interventions. As a result, recent research has begun to identify factors that influence the adoption of evidence-based caregiver interventions by health care systems. Ultimately, family centered care that addresses the needs of not only the patient but also the caregiver may be the best way to meet the needs of a heterogeneous group of caregivers across the care continuum. CONCLUSIONS: Family caregivers make an important contribution to the health and wellbeing of individuals with spinal and other neurological conditions. Ultimately, system changes, like family centered care, may be best suited to meet the complex needs of this heterogeneous group of caregivers.