The final stages of a parent's illness are exceptionally stressful for adolescents. However, how they manage this stressful time is unknown. The purpose of this project is to develop a theoretical framework to describe strategies adolescents and their parents use to help the adolescent in the final months of the ill parents'life and to identify ways in which health care providers help the adolescent.
The specific aims are to: 1) describe the strategies adolescents use to help them manage their lives during the parent's final months of life, 2) describe the strategies used by the parents to help their adolescent children, 3) describe how the strategies change over time, 4) explore use of health care services to meet the needs of the adolescent, and 5) describe the common strategies used by adolescents and their parents to help the adolescent during the final months of the parent's life. A basic principle of grounded theory is that groups who share a culture often also share psychosocial problems and processes that can be identified and described. Grounded theory will be used in this study because we believe adolescents of parents in hospice share a common problem and the ways in which they manage their lives are best understood as a series of complex interactions that change over time and are influenced by socio-cultural context. Twenty families with a parent in hospice and an adolescent child (12-18 years old) will be recruited from a large urban hospice. Both parents and their adolescent children will be invited to participate since they are able to offer important perspectives on the strategies they use to help the adolescent during the final months of the parent's life. The research associate will conduct 60-90 minute in-depth interviews in the participant's home or in a private room at the hospice facility. The ill parent's interview will be modified according to their stamina. Constant comparison analysis will be used to analyze the data. Coding will be established by group discussion, negotiation, or consensus during weekly team meetings. Credibility will be enhanced through the use of peer debriefing. Confirmability ensures the findings are grounded in the data. The PI will maintain an extensive audit trail including all transcriptions, memos, and diagrams to track decisions related to the changing conditions within the research and noting all theoretical decisions. Once the theoretical framework is developed, a panel of hospice nurses selected from the Hospice and Palliative Nurses Association will examine and comment on the emerging theory's congruence with clinical practice. This study will be the first to examine the strategies both adolescents and their parents use to help the adolescent deal with the approaching death of the parent. Adolescents are uniquely positioned to describe what they need for themselves. Understanding adolescents'perspective is thus foundational to developing effective interventions.

Public Health Relevance

The impact of a parent's impending death on the adolescent (ages 12-18) is an emerging public health problem. This problem is related to a number of potential negative effects on the adolescent's health. This study is relevant to public health because it will be the first to examine the strategies both adolescents and parents use to help the adolescent deal with the approaching death of a parent in order to guide efforts to deliver more effective care.

Agency
National Institute of Health (NIH)
Institute
National Institute of Nursing Research (NINR)
Type
Exploratory/Developmental Grants (R21)
Project #
1R21NR012700-01
Application #
8074721
Study Section
Special Emphasis Panel (ZNR1-REV-T (01))
Program Officer
Aziz, Noreen M
Project Start
2010-09-27
Project End
2012-06-30
Budget Start
2010-09-27
Budget End
2011-06-30
Support Year
1
Fiscal Year
2010
Total Cost
$197,726
Indirect Cost
Name
Kent State University at Kent
Department
Type
Schools of Nursing
DUNS #
041071101
City
Kent
State
OH
Country
United States
Zip Code
44242
Hansen, Dana M; Sheehan, Denice K; Stephenson, Pamela S et al. (2016) Parental relationships beyond the grave: Adolescents' descriptions of continued bonds. Palliat Support Care 14:358-63
Mayo, M Murray (2016) An Examination of Interactions between Hospice Health Care Providers and Adolescents with a Parent in Hospice. J Hosp Palliat Nurs 18:302-309
Stephenson, Pam Shockey; Sheehan, Denice; Hansen, Dana et al. (2015) Uncertainties experienced by family members when one parent is dying. Int J Palliat Nurs 21:488-94
Kopchak Sheehan, Denice; Burke Draucker, Claire; Christ, Grace H et al. (2014) Telling adolescents a parent is dying. J Palliat Med 17:512-20