End-of-Life and Palliative Needs of Adolescents and Young Adults (AYA) with Serious Illnesses (R01 Clinical Trial Optional) | PAR 19 136

Opportunity Information: Apply for PAR 19 136

The National Institutes of Health (NIH) funding opportunity titled "End-of-Life and Palliative Needs of Adolescents and Young Adults (AYA) with Serious Illnesses (R01 Clinical Trial Optional)" (Funding Opportunity Number PAR-19-136) supports research aimed at improving end-of-life and palliative care for adolescents and young adults living with serious, advanced illness. In this program, AYA refers to youth and young adults ages 12 through 24, consistent with definitions used by the World Health Organization and the Centers for Disease Control and Prevention. The overall goal is to generate stronger evidence about what this age group values and needs when facing life-limiting conditions, and to test or refine care approaches that better match their developmental stage, preferences, and real-world circumstances.

A major emphasis of the announcement is understanding the AYA perspective in a way that is specific and actionable. NIH is looking for studies that examine how adolescents and young adults think about and communicate their wishes, how they make decisions in partnership with family members and clinicians, and how factors like autonomy, identity formation, peer relationships, school or work life, and evolving family roles shape end-of-life choices. This includes research on decision-making processes, preferences for communication, and how AYA patients weigh tradeoffs involving symptom control, treatment burden, quality of life, and personal goals. Projects may also explore barriers that prevent AYA from receiving care aligned with their wishes, such as fragmented services between pediatric and adult systems, limited access to age-appropriate palliative specialists, or challenges in timely advance care planning that fits AYA developmental needs.

The FOA also prioritizes research on specific end-of-life and palliative care (EOLPC) models designed to support the full range of AYA needs. Rather than focusing only on medical symptoms, the opportunity highlights whole-person care that addresses physical comfort as well as psychological, social, and spiritual concerns. That can include models that better integrate symptom management, mental health support, family and caregiver services, and culturally responsive spiritual care. It also explicitly recognizes that family members and caregivers are part of the care unit, and encourages work that evaluates how EOLPC models affect not only patient outcomes but also caregiver strain, family communication, bereavement experiences, and overall support systems surrounding the AYA patient.

Mechanistically, this is an R01 grant, meaning it is intended for well-developed research projects that can produce meaningful, generalizable findings. The "Clinical Trial Optional" designation indicates that applicants may propose studies that include a clinical trial, but they are not required to do so; strong observational, qualitative, mixed-methods, or implementation-focused research can also fit if it directly addresses the FOA goals. The funding instrument is a discretionary grant under NIH, and the activity areas are education and health. The CFDA numbers associated with the opportunity are 93.361 and 93.399.

Eligibility is broad, which is important for a topic that often requires partnerships across healthcare systems, universities, community organizations, and culturally specific providers. Eligible applicants include state, county, and city or township governments; special district governments; independent school districts; public and state-controlled institutions of higher education; private institutions of higher education; federally recognized Native American tribal governments; Native American tribal organizations other than federally recognized tribal governments; public housing authorities and Indian housing authorities; nonprofits with or without 501(c)(3) status (as long as they are not institutions of higher education in those categories); for-profit organizations other than small businesses; and small businesses. The FOA also calls out additional eligible applicants such as Alaska Native and Native Hawaiian Serving Institutions, Asian American Native American Pacific Islander Serving Institutions (AANAPISISs), Hispanic-serving Institutions, Historically Black Colleges and Universities (HBCUs), Tribally Controlled Colleges and Universities (TCCUs), faith-based or community-based organizations, regional organizations, U.S. territories or possessions, eligible federal agencies, tribal governments that are not federally recognized, and even non-U.S. entities (foreign organizations). This wide eligibility signals NIH interest in reaching diverse populations and settings, including communities that are often underrepresented in serious illness and palliative care research.

Key administrative details from the source data include the original posting timeframe (created December 21, 2018) and an original closing date listed as January 7, 2022. The award ceiling and expected number of awards are not specified in the provided data, which typically means applicants need to rely on NIH budget guidance for R01s and any institute-specific notes when planning project scope and costs. Overall, the opportunity is focused on building evidence that leads to better, developmentally appropriate, and more equitable palliative and end-of-life care for adolescents and young adults with serious illness, with attention to the patient voice, family context, and practical care models that can be implemented in real clinical and community settings.

• The National Institutes of Health in the education, health sector is offering a public funding opportunity titled "End-of-Life and Palliative Needs of Adolescents and Young Adults (AYA) with Serious Illnesses (R01 Clinical Trial Optional)" and is now available to receive applicants.
• Interested and eligible applicants and submit their applications by referencing the CFDA number(s): 93.361, 93.399.
• This funding opportunity was created on 2018-12-21.
• Applicants must submit their applications by 2022-01-07. (Agency may still review applications by suitable applicants for the remaining/unused allocated funding in 2026.)
• Eligible applicants include: State governments, County governments, City or township governments, Special district governments, Independent school districts, Public and State controlled institutions of higher education, Native American tribal governments (Federally recognized), Public housing authorities/Indian housing authorities, Native American tribal organizations (other than Federally recognized tribal governments), Nonprofits having a 501 (c) (3) status with the IRS, other than institutions of higher education, Nonprofits that do not have a 501 (c) (3) status with the IRS, other than institutions of higher education, Private institutions of higher education, For-profit organizations other than small businesses, Small businesses, Others.

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