Adolescents and young adults

Author(s):  
Chana Korenblum ◽  
Finella Craig

Adolescents and young adults (AYAs) receiving palliative care form a distinct group with physical, emotional, psychological, and social needs that are significantly different from those of either children or mature adults. In this chapter, we focus on the unique needs of AYAs and the transition to adulthood in the context of living with a life-limiting condition (LLC) or life-threatening illness (LTI). For all our patients, the experiences and principles on which their adult identity is formed will be very different from those of their peers. The task for professionals is to deliver palliative care while supporting and respecting a transition to adulthood that may never be completed.

2015 ◽  
Vol 22 (4) ◽  
pp. 475-479 ◽  
Author(s):  
Kristine A. Donovan ◽  
Dianne Knight ◽  
Gwendolyn P. Quinn

2022 ◽  
pp. 275275302110687
Author(s):  
Kimberly A. Pyke-Grimm ◽  
Linda S. Franck ◽  
Bonnie Halpern-Felsher ◽  
Robert E. Goldsby ◽  
Roberta S. Rehm

Background: Adolescents and young adults (AYAs) with cancer must negotiate the transition between childhood and adulthood while dealing with a life-threatening illness. AYA involvement in decision making varies depending on the type of decision and when decisions occur during treatment, and evidence suggests that AYAs want to be involved in decision making. Objective: To explore involvement of AYAs with cancer in day-to-day decisions affected by their cancer and treatment. Methods: This qualitative study used interpretive focused ethnography within the sociologic tradition, informed by symbolic interactionism. Semi-structured interviews and informal participant observation took place at two quaternary pediatric oncology programs. Results: Thirty-one interviews were conducted with 16 AYAs ages 15 to 20 years. Major day to day decision-making categories identified included: (1) mental mindset, (2) self-care practices, (3) self-advocacy, and (4) negotiating relationships. Participants described how they came to grips with their illness early on and decided to fight their cancer. They described decisions they made to protect their health, how they advocated for themselves and decisions they made about relationships with family and friends. Conclusions: Through day-to-day decisions, participants managed the impact of cancer and its treatment on their daily lives. Research should focus on developing and implementing interventions to empower AYAs to participate in day-to-day decisions that will affect how they manage their cancer, its treatment and ultimately their outcomes. Implications for Practice: Healthcare providers can facilitate AYA's participation in day-to-day decision making through encouraging autonomy and self-efficacy by providing support and through effective communication.


2009 ◽  
Vol 7 (1) ◽  
pp. 27-35 ◽  
Author(s):  
Sebastien Montel ◽  
Valerie Laurence ◽  
Laure Copel ◽  
Helene Pacquement ◽  
Cecile Flahault

ABSTRACTObjective:To improve the palliative care and more effectively meet the needs of young patients and their families at the end of life, the authors investigated the place of death of adolescents and young adults treated in their institution and identified some of the factors influencing the choice of place of death.Methods:The parents and/or partners of adolescents and young adults (15 to 25 years old) who died at Institut Curie (cancer center) between 2000 and 2003 were contacted. Twenty-one families agreed to participate in the interview between October 2005 and April 2006. Analysis of the interviews comprised a descriptive part and a thematic part.Results:Nineteen out of 21 (90%) families declared that they did not really choose their child's place of death due to lack of time. However, all families said that they preferred the hospital. No family attended a bereavement group after their child's death and only 3 families (14%) consulted a mental health care professional. Thematic analysis showed that representations and beliefs concerning life and death at least partly determined the family's capacity to discuss the place of death with their child.Significance of results:Although progress has been made over recent years in France, there is still considerable room for improvement of palliative care to more effectively meet the needs of young patients and their families at the end of life.


2019 ◽  
Vol 6 (Supplement_2) ◽  
pp. S875-S876
Author(s):  
Anne M Neilan ◽  
Frances Lu ◽  
Kelly Gebo ◽  
Rebeca Diaz-Reyez ◽  
Mingshu Huang ◽  
...  

Abstract Background Adolescents and young adults (AYA) with HIV experience worse health outcomes than adults with HIV in the United States. Little is known about AYA patterns of utilization of costly healthcare resources. Methods We estimated utilization of outpatient, emergency department (ED), and inpatient care among 13–30 year-olds from 2006–2015. We stratified outpatient visits, ED visits and inpatient days per person-year (PY) by transmission mode (perinatal (PHIVY), non-perinatal (NPHIVY), age (13–17, 18–23, 24–30 years), CD4 strata (< 200, 200–499, ≥ 500 cells/µL) and presence or absence of viral load (VL) suppression (<, ≥ 400 copies/mL[c/mL]) combined with antiretroviral (ARV) use. We also quantified outpatient, ED, and inpatient care associated with specific AIDS-defining conditions. Results Among 4,450 AYA (PHIVY: 15%; NPHIVY: 85%), mean (SD) follow-up was 2.8 years (2.5) [PHIVY: 4.2 years (3.1); NPHIVY: 2.5 years (2.3)]. Mean age was 21.4 years (PHIVY: 16.9 years; NPHIVY: 22.3 years) and female sex was 28% (PHIVY: 52%; NPHIVY: 23%). Among PHIVY, most person-time (PT) was spent between ages 13–23 years (13–17 years: 43%; 18–23 years: 45%), CD4 ≥ 500/µL (61%), and VL < 400 c/mL (69%). Among NPHIVY, most PT was spent between ages 24 and 30 years (56%), CD4 ≥ 500/µL (54%), and VL < 400 c/mL (66%). PT spent while prescribed ARVs and VL ≥ 400 c/mL was 30% (PHIVY) and 24% (NPHIVY). For both PHIVY and NPHIVY, outpatient visit rates were higher at younger ages (13–17 years and 18–23 years), lower CD4 (< 200, 200–499/µL), and among those prescribed ARVs (Figure 1). Rates of ED visits and inpatient days were higher during PT spent at older ages (18–23 years, 24–30 years), lower CD4 (< 200, 200–499/µL), and VL ≥ 400 c/mL (Figures 2 and 3). Overall, utilization was higher among PHIVY than NPHIVY (outpatient: 12.1 vs. 6.0/PY; ED: 0.4 vs. 0.3/PY; inpatient: 1.5 vs. 0.8/PY). The overall rate of AIDS-defining conditions was 4.5/100 PY (Figure 4). Conclusion Among AYA with HIV, more ED visits and inpatient days were observed during time spent at older ages, lower CD4 counts, and VL ≥ 400 c/mL. While AIDS-defining conditions were rare, associated resource utilization was substantial. Interventions to improve retention in care, virologic suppression, and immune response may improve outcomes, and thus decrease costly resource utilization, for AYA with HIV as they transition to adulthood. Disclosures All authors: No reported disclosures.


2020 ◽  
Vol 68 (1) ◽  
Author(s):  
Naadira C. Upshaw ◽  
Anna Roche ◽  
Katrina Gleditsch ◽  
Erin Connelly ◽  
Karen Wasilewski‐Masker ◽  
...  

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