Rural Hospice Caregivers and the Social Workers Who Support Them: A Mixed Methods Study

Abstract

This study aimed to explore the experiences of rural caregivers for dying individuals and the hospice social workers who support them, with a focus on the Covid- 19 pandemic and its recovery phases. This study also investigated stress, secondary trauma, anticipatory grief, social support, and health disparities among home informal caregivers of dying persons, as well as stress and secondary trauma among hospice social workers. This study employed a mixed method approach to explore the factors affecting rural caregivers and hospice social workers. This allowed for a comprehensive understanding of their experiences. Initial analysis of means revealed moderate to high levels of anticipatory grief, secondary trauma, and caregiver stress among end-of-life caregivers. To explore the interactions between these variables, a multiple linear regression analysis was conducted using data from 107 caregivers. Each regression model (Caregiver Stress, Secondary Trauma, and Anticipatory Grief) was statistically significant. Results indicated that anticipatory grief, secondary traumatic stress, and caregiver stress co-vary and are influenced by perceived social support. Qualitative findings from caregiver interviews supported the quantitative results. Seven themes emerged: "no time to grieve but I am grieving," "feeling alone," "structure and routine help," "meaning making," "building a 'new normal'," "going into their world," and "impact ofCovid-19 pandemic." Interviews with 19 hospice social workers revealed moderate to high levels of anticipatory grief and secondary traumatic stress. Six themes emerged: "feeling disconnected and less effective," "grief regarding loss of no1malcy," "no longer 'heroes'," "false sense of security," "closer with peers and distanced from leaders," and "systemic barriers." Overall, this study sheds light on the specific stressors and emotional challenges faced by rural end-of-life caregivers and social workers. It highlights their resilience and adaptability in the face of adversity. The findings underscore the need for targeted support systems and interventions to address the mental health and well-being of these essential yet often overlooked members of the healthcare community. Additionally, the research contributes valuable insights to the broader discourse on the importance of social support in mitigating the effects of stress and trauma in caregiving professions.