THE EXPERIENCES OF NURSES AS DOUBLE DUTY CAREGIVERS FOR A FAMILY MEMBER AT THE END OF LIFE: INTERPRETIVE DESCRIPTION
Date of Award
Doctor of Philosophy in Nursing
This study explored the experiences of nurses providing end-of-life care for family members while continuing to work as a nurse. As the delivery of healthcare changes in our country, we are seeing a transition to community-based client care. As a result, there are more people with complex, advanced illnesses being cared for in the home by family members and friends. Family caregivers are the primary source of support for older adults with chronic illness and disability. These family caregivers take on many responsibilities, and often experience physical, emotional, psychological, and social distress because of the demands placed on them. A unique subset of this population are nurses who find themselves providing care in both their family lives and in their work, a phenomenon known as “double-duty caregiving”.
There has been an extensive amount of empirical work done exploring informal caregiving and end-of-life care. However, little research has been done to look at informal caregiving at the end-of life when the family caregiver is a nurse. Therefore, this study was conducted to better understand the experience of double-duty caregivers and to contribute to nursing practice knowledge. A qualitative design, using interpretive description, was chosen. Semi-structured, in-depth interviews, using responsive interviewing were conducted with 10 nurses who had previously provided end-of-life care for a family member.
Four themes emerged from the data: It Takes a Village, Driving the Bus, Juggling Many Hats, and Moving Through and Looking Back. The village was intended to capture those components of a support system that were essential in allowing the double-duty caregiver to do this difficult and demanding work. This support system included both the necessary assistance to care for their family member and the emotional support needed to be able to provide that care as a double-duty caregiver. Driving the bus was related to expectations that were placed upon the double-duty caregivers to care for their family member, because they were the nurse in the family. The bus refers to the care provided, and the driver refers to the expectations placed on the double-duty caregiver which influenced the caregiving experience. These expectations came from themselves as the nurse in the family, family members, the care recipient, hospice nurses, and physicians. Juggling many hats refers to the double-duty caregivers relentless need to balance multiple roles, or juggle many hats, which caused substantial distress. It was not possible for them to only be the family member and spend time with their loved one. The need to provide and oversee care constantly weighed on the participants. The last theme, moving through and looking back, encompassed the participants’ description of the impact of double duty caregiving both during the experiences and over time after the family member’s death.
Implications for education, clinical practice, and research are identified. The importance of developing open lines of communication between the double duty caregiver and the healthcare team is essential. Clarity of role and mutual respect between the double duty caregiver and the health care team is vital in determining how the double duty caregiver wants to be involved in care. The identification of educational and support needs is essential. Recommendations include further qualitative studies with diverse populations including non-Caucasian and male double duty caregivers, providing end of life care in the United States. There is also a need to explore the impact of double duty caregiving on professional practice.
Basley, Sandra A., "THE EXPERIENCES OF NURSES AS DOUBLE DUTY CAREGIVERS FOR A FAMILY MEMBER AT THE END OF LIFE: INTERPRETIVE DESCRIPTION" (2022). Open Access Dissertations. Paper 1361.