UCSF

This dissertation considers how families with a child with a life-limiting condition at end-of-life manage the transitions associated with the various locations of care: home, hospice, and hospital. Twenty-five participants were included in this grounded theory study: 9 mothers, 6 fathers, 4 grandmothers, 5 siblings, and one ill child. Families were recruited from either of two agencies: a pediatric hospice facility, or in-home hospice program.

Families had little to no support in transitions between locations of care; the transition process to the pediatric hospice facility was marked by a decision-making process that was dependent on the triad of messenger, delivery, and timing. Parents chose a hospice facility only if they had received accurate information from a trusted health care provider at a time when they were ready to consider such an option. The families' complex journey through end-of-life was inextricably tied to the care they received at each location of care.

The findings of the study underscore the importance of health care providers' role in parental decision-making, and provide insights into families' experiences from a family perspective. The findings indicate that families needed support in order to maintain family integrity and function; however, such support was rarely found, except through pediatric hospice. In-home hospice services were limited in the support during bereavement; however, the pediatric hospice facility continued to provide support as long as the family desired. The experience at the hospice facility was overwhelmingly positive.

The implications for practice include the need to provide guidance during the transitions between locations of care, including supporting families from diagnosis through bereavement, increasing access to information, and improving provider education in EOL care. The implications for research include the need to remove barriers that exclude families with children at EOL as there are few studies that include this population.