Project Summary/Abstract
Although much attention has been paid to family-centered hospice care, scant research has
examined how hospice care teams communicate with adolescent family members to address
the distinct needs of this age group. Adolescents with a parent in hospice comprise a vulnerable
population with emotional, practical, informational and social support needs and may suffer from
lingering and unresolved feelings of depression, anxiety, social isolation, loneliness and
uncertainty if these needs are not met while their ill parent is in hospice care. Compounding
these emotions is the caregiving role undertaken by some adolescents and the desire to
maintain a sense of normalcy with school and friendships.
Directed at the needs of the ill parent, the hospice care team often overlooks the needs of
adolescents who are at a developmental crossroads and may feel overwhelmed with many
unanswered questions. Members of the hospice care team may not initiate conversations will ill
parents about providing needed support to their children and may have minimal or no
interactions with adolescent family members. However, it is essential that the hospice care
team, including hospice volunteers, engages in clear and honest communication with
adolescents to provide vital support for effective coping strategies and to improve their long-
term outcomes.
Using a new evidence-based screening tool developed from our previous research, the Coping
and Communications Questionnaire (CCQ), this study will focus on how hospice volunteers, as
members of the hospice care team, may assist adolescents with more effective communication
to address the informational, emotional, and support needs of teens with a parent in hospice. By
identifying areas of adolescent discomfort related to communication about the ill parent,
caregiving responsibilities, and need for social support, hospice volunteers can encourage open
communication and provide a supportive environment in which teens may receive information
and ask questions, serving to minimize distress and improve coping skills.
The goal of this study is to improve adolescents’ communication with the hospice care team and
to develop a conceptual framework that encourages meaningful conversations between hospice
volunteers and adolescents during home visits. Using a mixed methods prospective approach,
researchers will triangulate data from three groups of stakeholders—adolescents, hospice
volunteers, and the hospice care team—to gain a deeper understanding of how to best help
adolescents during the ill parent’s final months of life. Research findings will have clinical
implications for enhancing effective communication between adolescents and the hospice care
team to achieve the support adolescents need during this difficult time.