scholarly journals Supporting Adolescents and Young Adults with Cancer: Oncology Provider Perceptions of Adolescent and Young Adult Unmet Needs

2017 ◽  
Vol 6 (4) ◽  
pp. 519-523 ◽  
Author(s):  
Anne C. Kirchhoff ◽  
Brynn Fowler ◽  
Echo L. Warner ◽  
Samantha T. Pannier ◽  
Douglas Fair ◽  
...  
2021 ◽  
Vol 3 ◽  
Author(s):  
Jabari Miles Evans ◽  
Alexis R. Lauricella ◽  
Drew P. Cingel ◽  
Davide Cino ◽  
Ellen Ann Wartella

With increasing media choice, particularly through the rise of streaming services, it has become more important for empirical research to examine how youth decide which programs to view, particularly when the content focuses on difficult health topics such as suicide. The present study investigated why adolescents and young adults chose to view or not view season 1 of 13 Reasons Why and how individual-level variables related to adolescents’ and young adults’ viewing. Using survey data gathered from a sample of 1,100 adolescents and young adult viewers and non-viewers of the series in the United States, we examined how participants’ resilience, loneliness, and social anxiety related to whether participants viewed the first season or not. Our descriptive results indicate that adolescents who watched the show reported that it accurately depicted the social realities of their age group, they watched it because friends recommended it, and they found the subject matter to be interesting. Non-viewers reported that they chose not to view the show because the nature of the content was upsetting to them. In addition, results demonstrated that participants’ social anxiety and resilience related to participants’ viewing decisions, such that those with higher social anxiety and higher resilience were more likely to report watching season 1. Together, these data suggest that youth make intentional decisions about mental health-related media use in an attempt to choose content that is a good fit for based on individual characteristics.


2019 ◽  
Vol 8 (5) ◽  
pp. 540-546 ◽  
Author(s):  
Bethann M. Pflugeisen ◽  
Pandora Patterson ◽  
Catherine F. Macpherson ◽  
Bernadette C. Ray ◽  
Rebecca L. Jacobsen ◽  
...  

PLoS ONE ◽  
2021 ◽  
Vol 16 (3) ◽  
pp. e0248990
Author(s):  
Cheng Wang

Smoking prevalence has decreased significantly among US adolescents and young adults in the past 20 years. It is possible that adolescent and young adult smokers were moving from core to peripheral positions in social networks and thus less influential as suggested in previous research on adult smokers. We construct five sample datasets to test these hypotheses but none of them receives much support. When the proportion of smokers is relatively higher in two sample datasets, smokers tended to be at more marginal network positions than nonsmokers, both smokers and nonsmoker could exert peer influence, and the magnitude of peer influence from smokers was even greater than that from nonsmokers. When smoking was less frequent in the other three sample datasets, smokers and nonsmokers were at random network positions and no peer influence on smoking behavior was detected. Therefore, core/periphery network positions are still the key linking smoking prevalence and peer influence among US adolescents and young adults but operating through a different mechanism from their adult counterparts. When scientists design and conduct prevention programs against adolescent and young adult smoking behavior, core/periphery network positions, smoking prevalence, and peer influence should all be taken into consideration.


2021 ◽  
Vol 8 ◽  
Author(s):  
Lindsay S. Petracek ◽  
Stacy J. Suskauer ◽  
Rebecca F. Vickers ◽  
Neel R. Patel ◽  
Richard L. Violand ◽  
...  

Introduction: Fatigue is a common acute symptom following SARS-CoV-2 infection (COVID-19). The presence of persistent fatigue and impaired daily physical and cognitive function has led to speculation that like SARS-CoV-1 infection, COVID-19 will be followed by myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).Methods and Results: We describe three adolescent and young adult patients who had confirmed or probable COVID-19 infections early on during the pandemic and were referred for evaluation to the Chronic Fatigue Clinic at the Johns Hopkins Children's Center. All patients reported orthostatic intolerance symptoms within the first 2 weeks of illness, and 10-min passive standing tests were consistent with postural tachycardia syndrome. After 6 months of illness, all three patients met criteria for ME/CFS. Clinical features of interest included strong histories of allergies in all three patients, two of whom had elevations in plasma histamine. Each demonstrated limitations in symptom-free range of motion of the limbs and spine and two presented with pathological Hoffman reflexes. These comorbid features have been reported in adolescents and young adults with ME/CFS.Conclusion: ME/CFS can be triggered by COVID-19 in adolescents and young adults. Further work is needed to determine the pathogenesis of ME/CFS after COVID-19 and optimal methods of treating these patients. Our preliminary study calls attention to several comorbid features that deserve further attention as potential targets for intervention. These include neuromuscular limitations that could be treated with manual forms of therapy, orthostatic intolerance and POTS for which there are multiple medications and non-pharmacologic therapies, treatable allergic and mast cell phenomena, and neurologic abnormalities that may require specific treatment. Larger studies will need to ascertain the prevalence of these abnormalities.


2016 ◽  
Vol 23 (3) ◽  
pp. 204 ◽  
Author(s):  
R. Ramphal ◽  
S. Aubin ◽  
P. Czaykowski ◽  
S. De Pauw ◽  
A. Johnson ◽  
...  

Adolescents and young adults (ayas) with cancer in active treatment face a number of barriers to optimal care. In the present article, we focus on the 3 critical domains of care for ayas—medical, psychosocial, and research—and how changes to the system could overcome barriers. We summarize the current literature, outline recommended principles of care, raise awareness of barriers to optimal care, and suggest specific changes to the system to overcome those barriers in the Canadian context. Many of the recommendations can nevertheless be applied universally. These recommendations are endorsed by the Canadian Task Force on Adolescents and Young Adults with Cancer and build on outcomes from two international workshops held by that group.


2018 ◽  
Vol 36 (1) ◽  
pp. 35-43 ◽  
Author(s):  
Hyeran An ◽  
Sunhee Lee

Objective: The purpose of this study is to investigate the life experiences and processes that occur as adolescent and young adult leukemia survivors return to social life using grounded theory. Method: This study comprised 14 adolescents and young adults who visited a hospital for follow-up care after treatment of leukemia. We used in-depth interviews to examine the participants’ experiences in returning to social life. The semistructured questionnaire examined “good and bad experiences in returning to social life,” “sources of happiness and stress,” and “strategies for managing stressful events.” Results: We extracted 6 categories and 21 concepts from the interviews. We grouped the 6 categories into a core category and three phases: “catching up with others,” “discovering myself,” and “planning my future.” A core category shown through all phases was “fear of recurrence.” The “catching up with others” phase included themes of “feeling different from others” and “wanting to be like others.” The “discovering myself” phase included “completing one thing at a time” and “recognizing myself as special.” The “planning my future” phase included “looking for things I can do.” Conclusions: Self-esteem was an important issue for adolescent leukemia survivors; negative illness perception affected self-esteem in both adolescents and young adults. It is important for health care providers to develop programs to help adolescent and young adult leukemia survivors to perceive their disease experiences more positively and to take part in social life, including school life.


Author(s):  
Morgan LR ◽  
Weiner RS ◽  
Ware ML ◽  
Bhandari M ◽  
Mahmood T ◽  
...  

In 2020 about 89,000 adolescents and young adults (AYA) (ages 15 to 39) were estimated to be diagnosed with cancer in the United States, 23,890 had CNS and spinal nervous system(SNS) involvement—accounting for one twentieth or five percent of the number cancer diagnoses in the United States. The estimated deaths for this group was18,020 deaths in 2020 (1).


2021 ◽  
Author(s):  
Allison Joy Mazzella ◽  
Mary Curry ◽  
Lisa Belter ◽  
Rosangel Cruz ◽  
Jill Jarecki

Abstract Background: With the approval of three treatments for spinal muscular atrophy (SMA) and several promising therapies on the horizon, the SMA adolescent and young adult populations are expected to evolve in the coming years. It is imperative to understand this cohort as it exists today to provide optimal care and resources, as well as to assess possible treatment effects over time. In 2018, Cure SMA launched two initiatives geared towards understanding adolescents and young adults with SMA, ages 12-25. First, Cure SMA launched a Quality of Life (QoL) survey to capture quantitative and qualitative information on this specific age demographic. Concurrently, Cure SMA invited SMA-affected individuals, ages 12-25, to create a three-minute video on their everyday experiences living with SMA. An inductive thematic analysis of the free-text survey questions along with the video contest findings are reported here. Results: Eighty-five individuals — 6 type Is, 58 type IIs, and 21 type IIIs — completed the Quality of Life free-response, while six individuals participated in the SMA awareness video contest. In both settings, individuals detailed a variety of challenges, including but not limited to forming or maintaining close relationships, experiencing feelings of isolation, challenges with accessibility, independence, and dealing with the stigma of being perceived as mentally disabled. Individuals also discussed their successes, including but not limited to higher education enrollment and attendance, development of quality friendships, and perseverance through obstacles. Additionally, notably in the survey, 39% of respondents requested the creation of an SMA peer support group in efforts to connect with each other as well as collectively navigate the aforementioned challenges they face. Conclusion: Together, these findings provide a rare glimpse into the unique mindsets, challenges and motivations of SMA adolescents and young adults, via patient-reported measures instead of caregiver proxy. The adolescent and young adult age demographics assessed represent a critical transition period in life and in SMA care. No one understands the needs of an adolescent or young adult with SMA better than the individuals themselves, and it is critical to encapsulate their insights to affect change.


2020 ◽  
Author(s):  
Allison Joy Mazzella ◽  
Mary Curry ◽  
Lisa Belter ◽  
Rosangel Cruz ◽  
Jill Jarecki

Abstract Background: With the approval of three treatments for spinal muscular atrophy (SMA) and several promising therapies on the horizon, the SMA adolescent and young adult populations are expected to evolve in the coming years. It is imperative to understand this cohort as it exists today to provide optimal care and resources, as well as to assess possible treatment effects over time. In 2018, Cure SMA launched two initiatives geared towards understanding adolescents and young adults with SMA, ages 12-25. First, Cure SMA launched a Quality of Life (QoL) survey to capture quantitative and qualitative information on this specific age demographic. Concurrently, Cure SMA invited SMA-affected individuals, ages 12-25, to create a three-minute video on their everyday experiences living with SMA. An inductive thematic analysis of the free-text survey questions along with the video contest findings are reported here. Results: Eighty-five individuals — 6 type Is, 58 type IIs, and 21 type IIIs — completed the Quality of Life free-response, while six individuals participated in the SMA awareness video contest. In both settings, individuals detailed a wide variety of challenges, including but not limited to forming or maintaining close relationships, feelings of isolation, challenges with accessibility, independence, and dealing with the stigma of being perceived as mentally disabled. Individuals also discussed their successes, including but not limited to higher education enrollment and attendance, development of quality friendships, and perseverance through obstacles. Additionally, in the survey, a substantial number of respondents (39%) requested the creation of an SMA peer support group in efforts to connect with each other as well as collectively navigate the aforementioned challenges they face. Conclusion: Together, these findings provide a rare glimpse into the unique mindsets, challenges and motivations of SMA adolescents and young adults, via patient-reported measures instead of caregiver proxy. The adolescent and young adult age demographics assessed represent a critical transition period in life and in SMA care. No one understands the needs of an adolescent or young adult with SMA better than the individuals themselves, and it is critical to encapsulate their insights to affect change.


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