U.S. Department of Health and Human Services: End-of-Life and Palliative Needs of Adolescents and Young Adults with Serious Illnesses
The End-of-Life and Palliative Needs of Adolescents and Young Adults (AYA) with Serious Illnesses solicitation aims to foster research on the unique perspectives, needs, wishes, and decision-making processes of adolescents and young adults (AYA; defined as youth between 12–24 years of age) with serious, advanced illnesses; and research focused on specific end-of-life/palliative care (EOLPC) models that support the physical, psychological, spiritual, and social needs of AYA with serious illness, their families and caregivers.
Research projects should include studies that incorporate variables such as: age, developmental stage, emotional maturity, diagnosis, prognosis, uncertain disease trajectory, sex/gender, culture/ethnicity, socioeconomic status, geographic location, language, and family structures, among other parameters. Studies may also consider differences across time points and disease progression, as well as ways in which EOLPC and planning can adapt to meet changing needs. Research projects of interest include, but are not limited to, those that:
- Examine the unique perspectives, preferences/needs/wishes and decision-making processes of AYA living with advanced, serious illness
- Characterize AYA-specific processes in comprehending advanced, serious illness to better understand how AYA can contribute to decisions around their care and end-of-life preferences
- Determine AYA-specific psychosocial effects of an advanced, serious illness diagnosis (e.g., body image, self-esteem or reintegration into ‘normal’ life) and the impact on their families and caregivers
- Distinguish significant transition points for AYA across the spectrum of the disease trajectory
- Develop AYA-appropriate models of care to improve care continuity, ease care transitions and care coordination, and referral to EOL care with the goal of improving quality of life for AYA and their families and caregivers
Identify knowledge gaps in AYA-specific developmental, cultural, social, educational, and language differences that impact the use of EOLPC services and resources
- Design, test, evaluate, and compare AYA-specific EOLPC interventions or models of care that support the physical, sociocultural, psychological, spiritual, and/or social needs of AYA, their families and caregivers, with the aim of improving quality of life and family satisfaction with care
- Investigate and determine appropriate language, terminology, and timing for EOLPC communication between clinicians and AYA, families/caregivers and AYA, families/caregivers and clinicians
- Design and test communication strategies/interventions to improve communication between clinicians and AYA, families/caregivers and AYA, families/caregivers and clinicians, with the aim of decreasing discordance, improving quality of life, and increasing satisfaction with care for AYA and families/caregivers
- Develop reliable and valid AYA-appropriate screening/measurement methods, instruments or tools such as those for early detection of physical, emotional, and/or psychosocial symptoms, non-adherence to treatment, need for referral to palliative care or hospice, health-related quality of life, or measurement of family well-being, among other considerations, in AYA living with advanced illness and/or approaching death
- Consider ethical concerns surrounding AYA involvement in family-centered advance care planning, and/or create tools/strategies/guidelines for managing discordance between AYA, families and/or health care providers
- Develop and test AYA-appropriate innovative technologies for use in palliative and/or hospice care models
- Develop AYA-appropriate metrics to determine the optimal timing of referral to palliative and/or hospice teams
Interdisciplinary collaborations that include nurse scientists in the project team are strongly encouraged.
Amount: Total funding amount is not specified. Application budgets are not limited but need to reflect the actual needs of the proposed project. The maximum project period is 5 years.
Eligibility: Higher education institutions; nonprofit organizations; for-profit organizations; governments; and others including independent school districts, public housing authorities/Indian housing authorities, Native American tribal organizations, faith-based or community-based organizations, regional organizations, and foreign institutions.
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