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.

Public Health Relevance

Adolescents with a parent in hospice comprise a vulnerable population with information and support needs which, if unmet, may result in lingering and unresolved feelings of grief and distress. Using a novel assessment strategy, this research will enable hospice volunteers to bridge communication barriers with adolescents to better meet their informational, emotional, and support needs. By generating clinical evidence of adolescent needs and hospice care team responses across the hospice care trajectory, findings from this study will lead to development of best-practice guidelines, interventions, and educational tools to improve hospice care for the entire family, including adolescents.

National Institute of Health (NIH)
National Institute of Nursing Research (NINR)
Exploratory/Developmental Grants (R21)
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Nursing and Related Clinical Sciences Study Section (NRCS)
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Kehl, Karen
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Kent State University
Schools of Nursing
United States
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