'Whole person' caregiver assessment: Insights from heart failure and stroke caregivers

Caregivers of persons with heart failure and stroke describe increased responsibilities after hospitalization. To better characterize the needs of caregivers who self-selected into the intervention, we conducted a convergent parallel mixed methods secondary analysis from our pilot study of The Heart Failure and Stroke Resilience Intervention for Caregivers (HEROIC) program. Using transcriptions of Visit 1, coders analyzed pre-defined domains of caregiving for features of perceived strength, neutrality, or challenge. The domains included a) Values (not rated); b) Caregiving Intensity; c) Dyadic Relationship; d) Social Support; e) Financial Resources; f) Home/Built Environment; g) Other Responsibilities of Caregiver; and h) Health/Health Care. Two coders identified salient quotes and rated the seven domains for each transcript. Discrepancies were resolved by group consensus. Data were then integrated with common demographic features and level of patient care need. Of the 20 caregivers, seven (35%) described low needs, 11 (55%) reported moderate needs, and two (10%) described high needs. The moderate/high needs group had worse self-reported health and caregiving-related outcomes when compared to the low needs group. Although a limited sample, this analysis highlights the spectrum of caregiving needs. While the HEROIC intervention was intended to capture caregivers with moderate/high needs, the self-selected inclusion of caregivers reporting low needs suggests that caregiving interventions broaden inclusion criteria. Quantitative measures of caregiving-related outcomes may miss caregivers who feel that they would benefit from targeted intervention. Overall, caregiving interventions that incorporate a whole-person approach have the potential to decrease caregiver burden and improve quality of life.