Interactions Among Adolescents with a Parent in Hospice and the Hospice Care Team

NIH RePORTER · NIH · R21 · $227,421 · view on reporter.nih.gov ↗

Abstract

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.

Key facts

NIH application ID
10153893
Project number
5R21NR018552-02
Recipient
KENT STATE UNIVERSITY
Principal Investigator
Denice Colette Sheehan
Activity code
R21
Funding institute
NIH
Fiscal year
2021
Award amount
$227,421
Award type
5
Project period
2020-05-01 → 2024-04-30