scholarly journals “It’s More Difficult…”: Clinicians’ Experience Providing Palliative Care to Adolescents and Young Adults Diagnosed With Advanced Cancer

2020 ◽  
Vol 16 (1) ◽  
pp. e100-e108 ◽  
Author(s):  
Jonathan Avery ◽  
Arielle Geist ◽  
Norma Mammone D’Agostino ◽  
Sarah K. Kawaguchi ◽  
Ramona Mahtani ◽  
...  

PURPOSE: Adolescents and young adults (AYAs; age 15-39 years) with advanced cancer are a population in whom quality of life is uniquely affected because of their stage of life. However, training focused on palliative care for AYAs is not routinely provided for health care providers (HCPs) in oncology. This study aims to explore the experiences of HCPs involved in introducing and providing palliative care caring for AYAs with advanced cancer and their families to understand the unique challenges HCPs experience. METHODS: Using a qualitative descriptive design, semistructured interviews were conducted with medical and radiation oncologists, palliative care physicians, psychiatrists, and advanced practice nurses involved in caring for AYAs diagnosed with advanced cancer (N = 19). Interviews were transcribed verbatim and analyzed using thematic analysis in combination with constant comparative analysis and theoretical sampling. RESULTS: There were 19 participants, 9 men and 10 women, with a median age of 45 years (range, 24-67 years). Six were palliative care physicians, 5 medical oncologists, 4 nurse practitioners, and 2 each radiation oncologists and psychiatrists. Overall, participants perceived the provision of palliative care for AYAs to be more difficult compared with older adults. Four themes emerged: (1) challenges helping AYAs/families to engage in and accept palliative care, (2) uncertainty regarding how to involve the family, (3) HCP sense of tragedy, and (4) HCP sense of emotional proximity. CONCLUSION: Findings from this study support the development of dedicated training for HCPs involved in palliative care for AYA.

Children ◽  
2021 ◽  
Vol 8 (2) ◽  
pp. 135
Author(s):  
Androniki Stavridou ◽  
Evangelia Kapsali ◽  
Eleni Panagouli ◽  
Athanasios Thirios ◽  
Konstantinos Polychronis ◽  
...  

Background: The COVID-19 pandemic has led to special circumstances and changes to everyday life due to the worldwide measures that were imposed such as lockdowns. This review aims to evaluate obesity in children, adolescents and young adults during the COVID-19 pandemic. Methods: A literature search was conducted to evaluate pertinent studies up to 10 November 2020. Results: A total of 15 articles were eligible; 9 identified 17,028,111 children, adolescents and young adults from 5–25 years old, 5 pertained to studies with an age admixture (n = 20,521) and one study included parents with children 5–18 years old (n = 584). During the COVID-19 era, children, adolescents and young adults gained weight. Changes in dietary behaviors, increased food intake and unhealthy food choices including potatoes, meat and sugary drinks were noted during the ongoing COVID-19 pandemic. Food insecurity associated with financial reasons represents another concern. Moreover, as the restrictions imposed reduced movements out of the house, physical activity was limited, representing another risk factor for weight gain. Conclusions: COVID-19 restrictions disrupted the everyday routine of children, adolescents and young adults and elicited changes in their eating behaviors and physical activity. To protect them, health care providers should highlight the risk of obesity and provide prevention strategies, ensuring also parental participation. Worldwide policies, guidelines and precautionary measures should ideally be established.


Author(s):  
Heba Shaaban ◽  
Mohsina Bano Shaikh

Abstract Electromagnetic radiation is the fastest growing environmental factor due to the vast development in technology in the last decades. Awareness about radiation has received more attention worldwide due to its health hazards. Adolescents are exposed to radiation from various sources on a daily basis. The number of studies conducted to assess the knowledge and perception of adolescents and young adults regarding radiation and its risks is limited, especially in the Middle East. The aim of this study was to assess the knowledge and perception about radiation and its associated hazards among adolescents and young adults. Additionally, our aim was to identify the best methods of education regarding radiation and its protective measures. A cross-sectional study was conducted among 506 participants in Saudi Arabia. It was found that the overall knowledge and awareness on radiation sources and its hazards among adolescents and young adults is inadequate. The majority of participants had misconceptions regarding radiation sources and its detriments to health. Socio-demographic variables were associated with the participants’ perception. Educating adolescents on radiation and its safety measures is much needed. It was found that the most preferred methods of education are social media and health care providers. The findings of this study will provide insight when designing future interventions to promote specific messages to enhance knowledge and improve awareness regarding radiation.


Author(s):  
Kayo Nakata ◽  
Eiso Hiyama ◽  
Kota Katanoda ◽  
Tomohiro Matsuda ◽  
Yuma Tada ◽  
...  

AbstractAccording to national cancer registry data in Japan, approximately 20,000 adolescents and young adults (AYAs, age 15–39 years) are newly diagnosed with cancer each year. Improvements in treatment and care for AYAs with cancer are included in the Phase Three Basic Plan to Promote Cancer Control Programs in Japan. This article reviews current cancer incidence and survival for AYAs with cancer in Japan using population-based cancer registry data. Mortality data through 2019 from the Vital Statistics of Japan are also described. Encouragingly, the 5-year survival probability for AYA cancers has continued to improve, in parallel with childhood cancers, and the mortality rate has decreased. There has been increasing attention to these vulnerable patients and improved partnerships and collaboration between adult and pediatric oncology; however, obstacles to the care of this population still exist at multiple levels. These obstacles relate to specific areas: research efforts and enrollment in clinical trials on AYA malignancies, AYA-specific psychosocial support such as education, financial support, and oncofertility care, and cancer care systems. It is important for Japanese oncologists, health care providers, and health policy makers to recognize that the AYA population remains vulnerable and still have unmet needs.


2019 ◽  
Author(s):  
Kyleigh Schraeder ◽  
Gina Dimitropoulos ◽  
Kerry McBrien ◽  
Jessica (Yijia) Li ◽  
Susan Samuel

Abstract Background: Transitioning from pediatric care to adult-oriented care at age 18 (the age of transfer in most countries and jurisdictions) is a complex process for adolescents and young adults affected by chronic physical health and/or mental health conditions. The role of primary health care providers for this population is poorly understood. Perspectives from these providers, such as family physicians and other members of the primary care team, have not been explored in depth. Methods: A total of 18 participants (e.g., family physicians, social workers, nurses) were recruited from 6 Primary Care Networks in Calgary, Alberta, Canada. Semi-structured individual interviews were conducted, and transcribed verbatim. A qualitative description approach was used to analyze the data, and included thematic analysis. Results: Five distinct, yet overlapping, roles of primary health care providers for adolescents and young adults transitioning to adult care resulted from our analysis: (1) being the “common thread” (continuous accessible care); (2) caring for the “whole patient” (comprehensive care); (3) “knowing families” (family-partnered care); (4) “empowering” adolescents and young adults to develop “personal responsibility”(developmentally-appropriate care); and (5) “quarterbacking” care (coordination of specialist and/or community-based care). Participants identified potential benefits of these roles for adolescents and young adults transitioning to adult care, and barriers in practice (e.g., lack of time, having minimal involvement in pediatric care). Conclusions: Input from family physicians, who follow their patients across the lifespan and provide the majority of primary care in Canada, are critical for informing and refining recommended transition practices. Our findings provide insights, from PHC providers themselves, to bolster the rationale for primary care involvement during transitions from pediatric specialty and community-based care for AYAs. Solutions to overcome barriers for integrating primary care and specialty care for adolescents and young adults need to be identified, and tested, with input from key stakeholders.


2018 ◽  
Vol 32 (8) ◽  
pp. 1410-1418 ◽  
Author(s):  
Ingebrigt Røen ◽  
Hans Stifoss-Hanssen ◽  
Gunn Grande ◽  
Anne-Tove Brenne ◽  
Stein Kaasa ◽  
...  

Background: Caring for advanced cancer patients affects carers’ psychological and physical health. Resilience has been defined as “the process of adapting well in the face of adversity, trauma, tragedy, threats or even significant sources of threat.” Aim: The aim of this study was to explore factors promoting carer resilience, based on carers’ experiences with and preferences for health care provider support. Design: Qualitative, semi-structured, individual interviews with family carers of advanced cancer patients were performed until data saturation. The interviews were recorded, transcribed, and analyzed using systematic text condensation. Setting/participants: Carers ( n = 14) of advanced cancer patients, not receiving curative treatment, admitted to an integrated curative and palliative care cancer outpatient clinic or to a university hospital cancer clinic, were included. Results: 14 carers of advanced cancer patients were included; 7 men, 7 women, and mean age of 59 years; 3 were bereaved; 12 were partners; 5 had young and teenage children. Four main resilience factors were identified: (1) being seen and known by health care providers—a personal relation; (2) availability of palliative care; (3) information and communication about illness, prognosis, and death; and (4) facilitating a good carer–patient relation. Conclusion: Health care providers may enhance carers’ resilience by a series of simple interventions. Education should address carers’ support needs and resilience. Systematic assessment of carers’ support needs is recommended. Further investigation is needed into how health care providers can help carers and patients communicate about death.


2015 ◽  
Vol 33 (29_suppl) ◽  
pp. 152-152
Author(s):  
Paul Joseph Daeninck ◽  
Simone Stenekes ◽  
Tara Carpenter-Kellett ◽  
Jill Talylor-Brown ◽  
Mark Kristjanson ◽  
...  

152 Background: The improvement in cancer screening, detection and treatment is changing the illness trajectory and experience for patients. Many cancer patients are living longer with advanced disease as treatment options have expanded. Thus, accurate prognostication is becoming challenging and referral to palliative care programs is often delayed until close to death. This has made the transition to a predominantly palliative approach to care complex to navigate for the health care team, patient and family. Methods: CancerCare Manitoba has undertaken an innovative project “Changing Focus: Living with Advanced Cancer” to enhance communication with primary health care providers (HCPs) and assist patients and caregivers in the transition to a palliative approach to care. The project includes development of an individualized patient treatment summary that provides details of the patient’s cancer treatment and symptoms, identifies the role of the HCPs involved with the patient and family, as well as the expectations for follow up care at the cancer centre and in the community. The transition appointment includes discussion around the treatment summary, standardized follow up care plan, and written information about palliative care, decision making, symptom management, unique issues for caregivers and details about local supports and resources is provided. Results: This presentation will focus on the development and implementation of this project within the cancer centre and throughout the province. Evaluation of this approach is ongoing. Family members and patients will provide feedback using a standardized questionnaire, and ongoing improvement will be built into the evolution of this program. HCPs will also be engaged in evaluation from their perspective. Conclusions: We expect this intervention will allow patients and families better quality of life and possibly improve the interval between the termination of chemotherapy and death.


2020 ◽  
Vol 59 (4-5) ◽  
pp. 388-395
Author(s):  
Samantha P. Bento ◽  
MaryJane S. Campbell ◽  
Olivia Soutullo ◽  
Fran R. Cogen ◽  
Maureen Monaghan

Pediatric health care providers are in a unique position to discuss the health implications of alcohol, tobacco, and drug use with adolescents and young adults (AYAs) with type 1 diabetes (T1D). This study evaluated the frequency of self-reported substance use and associated demographic and clinical characteristics in a sample of AYAs with T1D and patient-provider discussions of substance use in T1D care. Sixty-four AYAs completed questions about substance use from the Youth Risk Behavior Survey (YRBS). Corresponding diabetes clinic visits were audio-recorded, transcribed, and reviewed to examine substance use discussions. A total of 56.3% of AYAs reported ever engaging in substance use; 40.6% reported substance use within the past 30 days. Five AYAs had discussions about substance use during their most recent diabetes clinic visit. Substance use should be proactively addressed by pediatric health care providers and AYAs should be encouraged to raise questions related to substance use during clinic visits.


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