Lived Experiences of Caregiving to Patients Who Utilize Emergency Department Services Due to Mental Health and Substance Use Conditions

Abstract

Background: Patients with mental health and addiction (MHA) conditions who visit the emergency department (ED) often present severe symptoms, and require additional services and care. Up to 50-70% of patients with MHA conditions live with their family which provides patients essential assistance in acute MHA crisis, and routine tasks including ADL’s, medical appointments, symptom management, and financial support. Ongoing time and resource demands of caregiving have a deleterious effect on caregivers’ well-being including mental and physical health. However, there is limited research exploring the experiences of caregivers focusing on their mental and physical health. The purpose of this qualitative study was to investigate the lived experiences of caregiving to patients who visit the ED frequently due to MHA conditions.

Methods: Caregivers were recruited through a local MHA services’ caregiver peer support group. Informed consent was obtained from all study participants. In-depth individual semi-structured interviews were utilized to collect data on caregiving experiences. Data was analyzed by using a thematic analysis approach.

Results: Seven family caregivers participated in this study, and the narratives elucidated their lived experiences including the challenges they face (e.g., navigating healthcare systems, lack of support), the emotional toll they experience (e.g., psychological stress, and burden), and how they make sense of their experiences (e.g., understanding the meaning they created from their caregiving experiences).

Implications and lessons learned: Our study findings revealed that the caregiving role itself is a source of great stress and burden for caregivers, and often results in negative effects on physical and mental health. To improve wellbeing of caregivers, more support and resources are required to meet caregivers’ needs. Nurses can play a salient role in supporting caregivers by collaborating with other healthcare providers and communities to develop strategies and programs that address the challenges caregivers face when providing care to patients.