Artykuły w czasopismach: „Adolescent cancer experiences”

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Estefan, Andrew, Nancy J. Moules i Catherine M. Laing. "Composing Sexuality in the Midst of Adolescent Cancer". Journal of Pediatric Oncology Nursing 36, nr 3 (22.03.2019): 191–206. http://dx.doi.org/10.1177/1043454219836961.

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A cancer diagnosis heralds the onset of significant life changes. The various experiences of diagnosis, treatment, and recovery from cancer during adolescence and young adulthood are complex and disruptive. Emphasis on treatment and recovery often overshadows other social and developmental imperatives for adolescents and young adults. Acknowledging, exploring, and crafting one’s own sexual identity is a significant milestone achieved during this time, and it is one that is interrupted by the arrival and treatment of cancer. There is value in understanding how adolescents and young adults compose sexuality amid cancer experiences, and how this composition contributes to their ongoing stream of life experiences after recovery. As part of a larger study of sexuality and adolescent cancer, we undertook a narrative inquiry with Anna and Mark, two young adults who experienced cancer during adolescence. Over 14 months, we met with Anna and Mark, drawing on different narrative inquiry approaches to explore their past and ongoing experiences and to build negotiated stories of those experiences. We explored resonant threads between the stories, which help show the depth and complexity of sexuality as it is experienced in the midst of and after cancer. Two resonant threads are discussed: inward and outward looking, and sexuality and survival. The inquiry reveals the richness of self-composition amid competing stories of cancer treatment, disruptions to family and socialization, survivorship, what it means to be a young man or woman in the world, and the sense of a developing sexual self.

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Loades, Maria E., Venessa James, Laura Baker, Abbie Jordan i Aditi Sharma. "Parental Experiences of Adolescent Cancer-Related Fatigue: A Qualitative Study". Journal of Pediatric Psychology 45, nr 10 (22.10.2020): 1093–102. http://dx.doi.org/10.1093/jpepsy/jsaa080.

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Abstract Objective Cancer-related fatigue is common, disabling, and chronic, but professional help is not necessarily sought. Parents can support symptom management and facilitate help-seeking. This study explored parental experiences of their adolescent’s cancer-related fatigue and what they do to help. Methods Qualitative semi-structured interviews were conducted with 21 parents of 17 adolescents aged 12–18 who were previously diagnosed with cancer. Reflexive thematic analysis was used to analyze the data. Results Three high-order themes were generated. Firstly, “fatigue is inevitable and unpredictable.” This encompassed parental perceptions of fatigue as variable, distinct from normal tiredness, and linked to sleep and mood. Fatigue was seen as arising from cancer, which rendered parents helpless. Secondly, “fatigue is disruptive to normal life” beyond cancer treatment, which is contrary to expectations. Thirdly, parents managed fatigue by trying to balance the adolescent’s desires for normality and their own perception of what is realistic with encouraging activities, and by seeking support from others. Conclusions Parents see adolescent cancer-related fatigue as multi-faceted and experience it as unpredictable and attributed to cancer. They struggle to distinguish normal adolescent behavior from problematic fatigue, and to balance supporting and empowering the adolescent to live life to the fullest whilst also being realistic about the limitations imposed by fatigue and the benefits of activity. Parents try to manage fatigue practically but want more information about adolescent cancer-related fatigue to help establish their own and their adolescent’s expectations.

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Rodriguez, Leonor, Ann Marie Groarke, Pat Dolan i Padraig MacNeela. "Adolescent adjustment to maternal cancer: an interpretative phenomenological analysis (IPA)". Qualitative Research Journal 18, nr 4 (12.11.2018): 345–58. http://dx.doi.org/10.1108/qrj-d-17-00034.

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Purpose As an Interpretative Phenomenological Analysis (IPA), the purpose of this paper is to provide an in-depth understanding of adolescent experiences of maternal cancer to identify the individual and contextual factors that shape adolescent experiences and evaluates the potential applicability of the Family Ecology Model to the illness context. Design/methodology/approach This analysis is focussed on three female adolescents who completed semi-structured interviews, which were subjected to IPA. Maternal illness is a challenge for adolescents, which can be improved or undermined by their contexts. The analysis yielded three sub-themes: family structure, social supports, experiencing maternal cancer at a time of transition and the lasting impact of cancer. Findings This study found that adolescent experiences of maternal cancer depend on their contexts from an ecological perspective the type and quality of adolescent interactions determine coping and adjustment. Maternal cancer can be difficult as adolescents are already facing specific developmental challenges. Future research can benefit from adopting an ecological perspective to further understand adolescent experiences to support adolescent that may be more vulnerable and benefit from additional supports. This is not a generalisable piece of research but it provides a very deep and detailed understanding of the impact of maternal cancer on adolescents’ developmental course and determines how the complexity of their contexts can serve as a risk or a protective factor at this challenging time. Originality/value This paper contributes to the body of research by providing a comprehensive understanding of adolescents facing maternal cancer. The Ecological Model supports the findings of this research and proves to be a good model to understand the complex interplay between adolescents and their environments when facing a difficult challenge like maternal cancer is.

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Walker, Amy J., Frances M. Lewis i Abby R. Rosenberg. "Walking on Eggshells: Parents’ First Year After Their Adolescent Completes Their Cancer Treatment". Journal of Pediatric Oncology Nursing 37, nr 4 (6.03.2020): 233–43. http://dx.doi.org/10.1177/1043454220909788.

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Background: Despite an awareness that parents experience distress and heightened uncertainty at the end of their adolescent’s treatment for cancer, little is known about the specific challenges and concerns parents hold for their adolescent survivors or how they manage these challenges. This study described challenges parents experience in the first year after their adolescent’s cancer treatment and what parents did to manage those challenges. Method: Single occasion semistructured interviews were conducted with parents and were transcribed verbatim. Data were coded using inductive content analysis methods adapted from grounded theory. Results: Participants were 30 parents of adolescent survivors (13-18 years) who were in the first year following treatment completion. The core construct, “Walking on Eggshells,” explained the processes and experiences parents faced once treatment was complete. Two additional domains captured how parents managed posttreatment challenges (“Doing What We Can”) and the ways parents helped their adolescents adjust (“Balancing”). Conclusion: Study results suggest that services and materials are needed to help parents know common struggles that arise after treatment and ways to mitigate the severity of distress parents experience.

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Kazlauskaite, Vaida, i Stephen T. Fife. "Adolescent Experience With Parental Cancer and Involvement With Medical Professionals: A Heuristic Phenomenological Inquiry". Journal of Adolescent Research 36, nr 4 (9.01.2021): 371–97. http://dx.doi.org/10.1177/0743558420985446.

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Experiencing the death of a loved one can be a difficult occurrence. Adolescents, in particular, experience death in a unique way. Yet there is relatively little research on adolescents’ experience with parental death and their involvement in the medical setting during a parent’s terminal illness. This qualitative study utilized heuristic inquiry, a type of phenomenological research, to investigate adolescents’ involvement in the hospital setting during parental terminal illness. Qualitative analysis of participants’ experiences resulted in two primary categories associated with adolescents’ involvement with medical professionals during parental illness: factors influencing hospital involvement and experience with health care professionals. The findings have implications for medical and mental health professionals who work with adolescent family members of terminally ill patients.

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Schreiner, Katherine, Daniel H. Grossoehme, Justin N. Baker, Jennifer Needle, Sarah Friebert i Maureen E. Lyon. "“Being healthy and living life as if I never had cancer”: The meaning of “living well” from adolescents with cancer." Journal of Clinical Oncology 38, nr 15_suppl (20.05.2020): e22532-e22532. http://dx.doi.org/10.1200/jco.2020.38.15_suppl.e22532.

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e22532 Background: Extensive resources are devoted to discovering novel cancer treatments. Meanwhile, patient priorities and experiences must also be addressed. Specifically, among adolescents with cancer, patients’ definitions of “living well” may elucidate treatment preferences, guide care teams and families, and influence future behavioral interventions. The objective was to develop an empirical definition of “living well” for adolescents with cancer to enhance shared decision-making. Methods: Video recordings were analyzed from the Next Steps: Respecting Choices interviews with n = 30 adolescents ages 14-21 years with cancer and their families, a subsample of N = 126 adolescent/family dyads participating in a randomized clinical trial, FAmily CEntered (FACE) Advance Care Planning. Interviews were transcribed, verified and anonymized. A phenomenological analytic method was used to identify psychological meaning in participants’ statements. Results: Adolescents with cancer conceptualize living well as meaning maintaining physical, mental and emotional health, while engaging in purposeful, typical, adolescent-appropriate activities with people important to the adolescents. This has four components: living mindfully; living an identity as a healthy adolescent; spending time with friends and family; and living a purposeful life without depression. Living well means most often enjoying these activities while spending time with family and friends. An exemplary quotation is, “...being able to have a life where everything is going good, and being able to live healthy...gets rid of some of your worries not only for yourself but for your friends and family...less worries means a less stressful life...” Conclusions: By determining what “living well” means to adolescents with cancer, care teams and families can more easily understand patients’ priorities. A firm grasp on patients’ definitions of “living well” could relieve significant burden from families and increase families’ willingness to honor adolescent treatment preferences. Findings may guide future psychosocial interventions. Clinical trial information: NCT01670461.

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Menossi, Maria José, Juliana Cardeal da Costa Zorzo i Regina Aparecida Garcia de Lima. "The dialogic life-death in care delivery to adolescents with cancer". Revista Latino-Americana de Enfermagem 20, nr 1 (luty 2012): 126–34. http://dx.doi.org/10.1590/s0104-11692012000100017.

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This study aims to understand the experience of adolescents with cancer, family and the health team regarding death in the healthcare context, in the light of Edgar Morin's proposed theoretical framework of complexity. Participants were 12 adolescents, 14 relatives and 25 health professionals. The interview was used for data collection. The discussion of data was guided by the dialogic life-death in the context of care to adolescents with cancer. It was observed that the singularity in the way the adolescent experiences time and faces death and the possibility that the family will lose a loved one may not be in accordance with the care the health team offers, considering structural, organizational and affective aspects. It is not enough for the team just to rationally make choices on the use of diagnostic-therapeutic devices, in line with predefined moments in the disease. Instead, a contextualized and sensitive understanding of each situation is needed.

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Waters, Austin R., Karely Mann, Echo L. Warner, Perla L. Vaca Lopez, Heydon K. Kaddas, Nicole Ray, Tomoko Tsukamoto i in. "Adolescent and young adult cancer patients' health insurance experiences, expectations, and literacy." Journal of Clinical Oncology 38, nr 29_suppl (10.10.2020): 65. http://dx.doi.org/10.1200/jco.2020.38.29_suppl.65.

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65 Background: Adolescent and young adult (AYA) cancer patients (15-39 years of age) often report health insurance concerns and financial toxicity due to their life-saving treatment. AYAs often have limited experience with healthcare prior to their diagnosis, which may limit their understanding of health insurance concepts, coverage, and costs. To describe AYA health insurance experiences, expectations, and literacy, we conducted semi-structured interviews with AYA cancer patients and survivors. Methods: Eligible participants were 18-39 years, diagnosed with cancer, and insured. Participants were recruited through an AYA cancer navigation program in Utah from 10/2019-03/2020. Participants were purposively sampled to achieve equal age strata (18-25 vs. 26-39), as patients under 26 often remain on their parents policy. Individual interviews were recorded, transcribed, and analyzed. Inductive qualitative analysis was conducted to describe their experiences with and understanding of their insurance. We calculated descriptive statistics of demographics and the Health Insurance Literacy Measure (HILM), a continuous measure ranging from 0-84 (higher scores indicate higher comfortability and literacy). Associations of age (18-25 vs. 26-39) and policy holder (yes vs. no) with HILM score were evaluated with t-tests. Results: AYAs (N = 24) were nearly even by gender, female (58%), primarily heterosexual (92%), Non-Hispanic White (79%), and had at least some college (92%). Less than half of participants were policy holders (41.7%). Three themes emerged from analysis: 1) Lack of knowledge and experiential learning throughout treatment, 2) Unclear expectations of health insurance, and 3) Difficulties navigating coverage and the complex systems. Most AYAs were unaware of the specifics of their coverage and how their insurance plan impacted their costs. Most AYAs were surprised at the lack of coverage and high costs they encountered during treatment. Most AYAs experienced substantial difficulty navigating coverage issues, particularly the appeals process. The mean HILM score was 55.63 (SD = 10.06), no differences by age group or policy holder status. Conclusions: AYAs with cancer report substantial difficulty navigating the complex health insurance system and demonstrate low levels of health insurance literacy. Health insurance education focusing on insurance concepts (e.g., cost-sharing mechanisms) may help AYAs better manage costs and enable them to make informed health insurance decisions despite being at higher risk for financial toxicity.

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Tindle, Danielle, Carol Windsor i Patsy Yates. "Centralizing Temporality in Adolescent and Young Adult Cancer Survivorship". Qualitative Health Research 29, nr 2 (5.09.2018): 173–83. http://dx.doi.org/10.1177/1049732318797087.

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Drawing on Gadamer’s hermeneutic philosophy, this article presents a key outcome of broader research into the phenomenon of adolescent and young adult cancer survivorship. Data were generated through semi-structured interviews with 45 participants from Australia, England, and the United States. The participants received a cancer diagnosis between the ages of 15 and 29 years and were aged 18 to 40 years at the time of interview. The key analytical finding depicts the concept of time as central to the experiences in survivorship. Altered beliefs in temporal progression and biographical chronology affected the organization of time, the structuring and value of life events, and the use of time as a resource. The significance of temporality in young survivors’ experiences warrants its centrality in the design of survivorship care models that reflect a broader understanding of the life experiences of this population.

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Carlsson, Agneta Anderzén, Annica Kihlgren i Venke Sørlie. "Embodied suffering: experiences of fear in adolescent girls with cancer". Journal of Child Health Care 12, nr 2 (czerwiec 2008): 129–43. http://dx.doi.org/10.1177/1367493508088550.

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Stiffler, Deborah, Joan Haase, Barbara Hosei i Brooke Barada. "Parenting Experiences With Adolescent Daughters When Mothers Have Breast Cancer". Oncology Nursing Forum 35, nr 1 (1.01.2008): 113–20. http://dx.doi.org/10.1188/08.onf.113-120.

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Mack, Jennifer W., Karen M. Fasciano i Susan D. Block. "Adolescent and Young Adult Cancer Patients’ Experiences With Treatment Decision-making". Pediatrics 143, nr 5 (18.04.2019): e20182800. http://dx.doi.org/10.1542/peds.2018-2800.

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Stiffler, Deborah, Brooke Barada, Barbara Hosei i Joan Haase. "When Mom Has Breast Cancer: Adolescent Daughters' Experiences of Being Parented". Oncology Nursing Forum 35, nr 6 (1.11.2008): 933–40. http://dx.doi.org/10.1188/08.onf.933-940.

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Lalayiannis, Leonie, Nicky Asbury, Graham Dyson i Amanda Walshe. "How do women with secondary breast cancer experience telling their adolescent children about their diagnosis?" Journal of Health Psychology 23, nr 9 (5.06.2016): 1223–33. http://dx.doi.org/10.1177/1359105316648484.

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This study investigated how women with secondary breast cancer experience telling their adolescent children. Semi-structured interviews were conducted with women who had been diagnosed with secondary breast cancer at least 1 year prior to the interview. Seven women, who had at least one child between 12 and 19 years old living at home at the time of diagnosis, were interviewed. The interviews were analysed using interpretative phenomenological analysis for an in-depth understanding of women’s experiences. Women found that it was easier to tell their children of their secondary breast cancer diagnosis compared to their primary cancer. However, they talked about the impact the diagnosis had on their family.

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Jones, Jennifer M., Margaret Fitch, Jared Bongard, Manjula Maganti, Abha Gupta, Norma D’Agostino i Chana Korenblum. "The Needs and Experiences of Post-Treatment Adolescent and Young Adult Cancer Survivors". Journal of Clinical Medicine 9, nr 5 (13.05.2020): 1444. http://dx.doi.org/10.3390/jcm9051444.

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(1) Background: Adolescents and young adults (AYAs) who have been diagnosed with and treated for cancer have unique healthcare needs, but more research is needed to inform developmentally targeted cancer care for this population. The purpose of the current analyses was to describe the physical and psychosocial concerns and experiences of AYA cancer survivors during the post-treatment phase. (2) Methods: A national survey was conducted by the Canadian Partnership Against Cancer to evaluate the experiences and unmet needs of cancer survivors (≥18 years) within the first 5 years following cancer treatment. The current analyses were conducted on the AYA survivor population (18–34 years). (3) Results: A total of 575 surveys were completed by AYAs. Of these, 61% were female, 51% were married/partnered, and 52% were 1–3 years post treatment. Approximately three-quarters report their physical or emotional health as good/very good. Overall, 88% reported at least one physical concern [mean of 3.98+2.11 physical concerns (range 0–9)], 90% reported at least one emotional concern [mean of 3.77+1.75 emotional concern (range 0–6)], and 79% reported at least one practical challenge [mean of 2.39+1.28 practical concerns (range 0–5)]. The most common concerns were anxiety/worry about cancer returning (83%), fatigue/tiredness (78%), and depression/loss of interest in daily activities (66%). On average, 43% of those reporting a concern sought help. Common reasons for not seeking help included not wanting to ask, being told that it was normal to feel the way they did, or embarrassment. Of those who did seek help, 37% encountered difficulty obtaining assistance. (4) Conclusions: These results suggest that post-treatment AYA cancer survivors have a high rate and number of physical, psychosocial, and practical concerns and are often not seeking or receiving help to address these. Proactive approaches to characterizing and eliminating barriers to obtaining appropriate care are needed.

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Nakayama, Hideki, Yasushi Toh, Manami Fujishita i Hitoshi Nakagama. "Present status of support for adolescent and young adult cancer patients in member hospitals of Japanese Association of Clinical Cancer Centers". Japanese Journal of Clinical Oncology 50, nr 11 (6.08.2020): 1282–89. http://dx.doi.org/10.1093/jjco/hyaa141.

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Abstract Background the proportion of adolescent and young adult cancer patients is relatively small, but they require age-specific support. We conducted a survey on the present status of support for adolescent and young adult cancer patients in the Japanese Association of Clinical Cancer Centers. Methods in December 2018, the primary questionnaires were sent to 32 hospitals of Japanese Association of Clinical Cancer Centers regarding support for adolescent and young adult cancer patients. Secondary questionnaires were sent to doctors, nurses and medical social workers in 24 hospitals for the implementation rates of information provision and consultation on 17 unmet needs identified in the study by the Ministry of Health, Labour and Welfare, Japan. Results there were marked differences in support for adolescent and young adult cancer patients among hospitals. Only one hospital facilitated an adolescent and young adult department and ward. Thirteen hospitals cooperated with the paediatric cancer designated hospitals. A learning support for high school-aged patients was provided in 15 hospitals. Adolescent and young adult support teams were active in seven hospitals and staff training sessions were held in eight hospitals. Many hospitals had referrals for fertility preservation. The rates of information provision and consultation for more than 70% of adolescent and young adult patients showed statistically significant differences among the medical professions in most of the 17 items. Conclusions support systems and activities for adolescent and young adult cancer patients vary extremely across hospitals. Information provision and consultation for unmet needs are still insufficient. Therefore, sharing information and experiences is required to enhance the support for adolescent and young adult cancer patients.

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Valizadeh, Leila, Vahid Zamanzadeh, Akram Ghahramanian, Saeed Musavi, Masoomeh Akbarbegloo i Fang‐yu Chou. "Adolescent cancer survivors' experiences of supportive care needs: A qualitative content analysis". Nursing & Health Sciences 22, nr 2 (14.08.2019): 212–19. http://dx.doi.org/10.1111/nhs.12640.

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Robertson, Eden G., Ursula M. Sansom-Daly, Claire E. Wakefield, Sarah J. Ellis, Brittany C. McGill, Emma L. Doolan i Richard J. Cohn. "Sexual and Romantic Relationships: Experiences of Adolescent and Young Adult Cancer Survivors". Journal of Adolescent and Young Adult Oncology 5, nr 3 (wrzesień 2016): 286–91. http://dx.doi.org/10.1089/jayao.2015.0061.

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McElearney, Patrick E. "Cancer’s Uncertain Identity: A Narrative and Performative Model for Coping". Qualitative Inquiry 25, nr 9-10 (13.08.2018): 979–88. http://dx.doi.org/10.1177/1077800418792944.

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I offer my former experiences coping with adolescent cancer as evidence to warrant my exploration into coping as a narrative and performative matter of identity. I articulate coping as performative and narrative apperception, wherein the act of coping can be a performative act reflexively tethered to narrative identity, and entrenched in sociocultural constructs. I argue that (a) a cancer diagnosis and cancer narratives are language in action; (b) there is a liminal and uncertain state of all cancer patients, and adolescent patients in particular; and (c) narratives and their discursive structures create, and are created by, performed actions, narratives, and identities.

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Hedström, Mariann, Inger Skolin i Louise von Essen. "Distressing and positive experiences and important aspects of care for adolescents treated for cancer. Adolescent and nurse perceptions". European Journal of Oncology Nursing 8, nr 1 (marzec 2004): 6–17. http://dx.doi.org/10.1016/j.ejon.2003.09.001.

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Kaul, Sapna, Mark Fluchel, Holly Spraker-Perlman, Christopher F. Parmeter i Anne C. Kirchhoff. "Health care experiences of long-term survivors of adolescent and young adult cancer". Supportive Care in Cancer 24, nr 9 (28.04.2016): 3967–77. http://dx.doi.org/10.1007/s00520-016-3235-x.

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Brabin, L., S. A. Roberts, R. Stretch, D. Baxter, P. Elton, H. Kitchener i R. McCann. "A survey of adolescent experiences of human papillomavirus vaccination in the Manchester study". British Journal of Cancer 101, nr 9 (6.10.2009): 1502–4. http://dx.doi.org/10.1038/sj.bjc.6605362.

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Perez, Giselle K., John M. Salsman, Kaitlyn Fladeboe, Anne C. Kirchhoff, Elyse R. Park i Abby R. Rosenberg. "Taboo Topics in Adolescent and Young Adult Oncology: Strategies for Managing Challenging but Important Conversations Central to Adolescent and Young Adult Cancer Survivorship". American Society of Clinical Oncology Educational Book, nr 40 (maj 2020): e171-e185. http://dx.doi.org/10.1200/edbk_279787.

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Research on adolescents and young adults (AYAs) with cancer has flourished over the past decade, underscoring the unique medical and psychosocial needs of this vulnerable group. A cancer diagnosis during adolescence and young adulthood intersects with the developmental trajectory of AYAs, derailing critical physical, social, and emotional development. AYAs face these abrupt life changes needing age-appropriate information and resources to offset these challenges. Greater attention is needed to address AYA-specific concerns on reproductive and sexual health, financial security and independence, emotional well-being, social support, and end-of-life care. If these unique needs are unaddressed, this can adversely affect AYAs’ health care engagement and overall quality of life, increasing their risk for cancer-related morbidity and early mortality. In particular, health care decisions made during treatment have important implications for AYA patients’ future health. Oncology clinicians are well positioned to address AYA patients’ concerns by anticipating and addressing the challenges this age group is likely to face. In this paper, we explore several core topics that affect AYAs’ quality of life and that can be challenging to address. Starting from the moment of diagnosis, through cancer treatment and post-treatment survivorship, and into end of life, each section highlights critical developmental-centric life domains that are affected by the cancer experience. Specifically, we discuss resources, tools, and strategies to navigate these challenging conversations. Taking a risk-reduction approach that invites two-way communication and facilitates referral to age-appropriate resources would help destigmatize these experiences and, in turn, would support the provision of compassionate and effective age-concordant care to this vulnerable group.

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Cheung, Christabel K., Thuli Katerere-Virima, Laura E. Helbling, Bria N. Thomas i Reginald Tucker-Seeley. "Capturing the financial hardship of cancer in military adolescent and young adult patients: A conceptual framework." Journal of Clinical Oncology 38, nr 29_suppl (10.10.2020): 163. http://dx.doi.org/10.1200/jco.2020.38.29_suppl.163.

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163 Background: Cancer can be a setback for young active-duty military patients, with potential implications for their financial well-being, early career paths, and young families. Despite the assumption of sufficient material support for military patients, cancer and its treatments still result in substantial out-of-pocket expenses and lost-opportunity costs that can lead to financial hardship. Although prior cancer survivorship studies have put forth a material, psychosocial, and behavioral conceptual framework for describing financial hardship following a cancer diagnosis, it is unknown whether this framework adequately depicts the experience of financial hardship among military adolescent and young adult (AYA) patients. The primary aim of the current study was to extend this conceptual model of financial hardship following a cancer diagnosis for application among military AYA patients. Methods: Using Gale and colleagues’ Framework Method for qualitative multi-disciplinary health research, the investigator team conducted focus groups and key informant interviews (n=24) with active-duty AYA cancer patients, cancer care providers, and commanding officers at both a military medical center and a military post in Hawaii. Subsequently, content analysis and thematic abstraction produced results that were sorted to characterize the material, psychosocial, and behavioral domains of financial hardship. Finally, investigators employed health behavioral change theories to construct a conceptual framework. Results: Data analysis revealed that young active-duty military patients’ experiences of financial hardship following a cancer diagnosis occur within material, psychosocial, and behavioral domains that are uniquely situated within the environments of AYA development and military culture. Hence, we elaborated upon an existing conceptual framework of the financial hardship of cancer, by extending it to capture two meso-level contexts that emerged from our findings: (1) life course development and (2) occupational culture. Conclusions: Differentiating individual experiences of financial hardship within the contexts of life course development and occupational culture, may enable the development of interventions that are informed by the aspect of financial hardship most impacted by cancer care for this special population. Future research should further explicate the meso-level contexts in our study, and investigate the associations among and between factors within these social and environmental contexts.

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Burkhardt, B., I. Oschlies, W. Klapper, M. Zimmermann, W. Woessmann, A. Meinhardt, E. Landmann i in. "Non-Hodgkin's lymphoma in adolescents: experiences in 378 adolescent NHL patients treated according to pediatric NHL-BFM protocols". Leukemia 25, nr 1 (29.10.2010): 153–60. http://dx.doi.org/10.1038/leu.2010.245.

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May, Elizabeth A., Brittany C. McGill, Eden G. Robertson, Antoinette Anazodo, Claire E. Wakefield i Ursula M. Sansom-Daly. "Adolescent and Young Adult Cancer Survivors' Experiences of the Healthcare System: A Qualitative Study". Journal of Adolescent and Young Adult Oncology 7, nr 1 (luty 2018): 88–96. http://dx.doi.org/10.1089/jayao.2017.0015.

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Laing, Catherine M., Nancy J. Moules, Andrew Estefan i Mike Lang. "Stories That Heal: Understanding the Effects of Creating Digital Stories With Pediatric and Adolescent/Young Adult Oncology Patients". Journal of Pediatric Oncology Nursing 34, nr 4 (1.02.2017): 272–82. http://dx.doi.org/10.1177/1043454216688639.

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The purpose of this philosophical hermeneutic study was to determine if, and understand how, digital stories might be effective therapeutic tools to use with children and adolescents/young adults (AYA) with cancer, thus helping mitigate suffering. Sixteen participants made digital stories with the help of a research assistant trained in digital storytelling and were interviewed following the completion of their stories. Findings from this research revealed that digital stories were a way to have others understand their experiences of cancer, allowed for further healing from their sometimes traumatic experiences, had unexpected therapeutic effects, and were a way to reconcile past experiences with current life. Digital stories, we conclude, show great promise with the pediatric and AYA oncology community and we believe are a way in which the psychosocial effects of cancer treatment may be addressed. Recommendations for incorporating digital stories into clinical practice and follow-up programs are offered.

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Kavas, Mustafa Volkan. "How to Increase the Quality of a Suffering Experience: Lessons Derived From the Diary Narratives of a Dying Adolescent Girl". OMEGA - Journal of Death and Dying 76, nr 3 (2.03.2017): 256–95. http://dx.doi.org/10.1177/0030222817694667.

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Personal narratives are assumed to be primary sources of the essential meaning of lived experiences of dying. In this study, I analyzed the personal diary of Miraç Fidan, a terminally ill adolescent with advanced cancer who kept a diary until her death at the age of 15. Miraç’s Diary, also published as a book, was subjected to hermeneutic phenomenological narrative analysis. Inferences were drawn regarding the following basic elements: (a) The dynamics in which Miraç lived and (2) her perceptions of herself, her immediate environment, and her experiences. Suffering seems to be the main experience dominating Miraç’s life, which I examined with regard to two dimensions: suffering caused by inevitable factors and suffering caused by preventable/changeable factors. The results suggest that if various causes among contextual factors are neutralized, then the quality of the existential experience determined by the inevitable factors would increase.

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Sopfe, Jenna, Rebekah Marsh, Leslie C. Appiah, James L. Klosky, Pamela N. Peterson i Brooke DorseyHolliman. "Evaluating sexual function in adolescent and young adult childhood cancer survivors." Journal of Clinical Oncology 38, nr 15_suppl (20.05.2020): e24180-e24180. http://dx.doi.org/10.1200/jco.2020.38.15_suppl.e24180.

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e24180 Background: Up to half of adolescent and young adult (AYA) childhood cancer survivors (CCS) experience sexual dysfunction (SD) as a result cancer or its treatment. SD in CCS is under-recognized, with low levels of routine screening due to barriers such as discomfort, time, and awareness. This study explores solutions to these barriers by describing AYA CCS preferences for implementation of screening for SD and evaluating the utility of a validated adult screening tool (PROMIS SexFS Brief) in this population. Methods: 16 AYA CCS (aged 15-24 years) completed semi-structured interviews followed by questionnaire completion. Interviews explored patients’ prior experiences with SD screening, along with preferences for screening type (e.g., discussion, screening tool), delivery modality, and timing. Patients then completed the PROMIS SexFS Brief while verbalizing their thoughts and providing open-ended responses to each item. Transcribed interviews were inductively coded and analyzed, guided by content analysis methodology. Results: This analysis represents 2/3 of planned interviews, and all will be completed by April 1, 2020. Interviews were performed with 11 females and 5 males (median age 21). Preliminary analysis demonstrates that participants had minimal experience with SD conversations, but had preferences regarding by whom, how, and when screening/education should occur. Who: Participants felt providers should have preexisting rapport with their patients; preferences existed for provider role and sex/age. How: A combination of written materials and in-person conversations was preferred. Several acknowledged a desire to have a “warning” that the conversation would happen, such as through a questionnaire. Participants did not have a preference regarding delivery modality (paper vs. online). The PROMIS SexFS Brief appeared to demonstrate content validity and acceptability in AYA CCS. When: Participants wanted education and screening to occur regularly throughout cancer therapy and survivorship. SD conversations should be tailored developmentally to the patient. Conclusions: Our results demonstrate a theme throughout interviews of the importance of patient/provider rapport. Further, while AYA CCS prefer in-person conversations about SD, conversations should be preceded by written information or a questionnaire to increase patient preparedness/comfort. Preliminary findings suggest that the PROMIS SexFS Brief is a promising tool for screening SD in this population; further studies evaluating use in clinical settings is warranted.

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Tafjord, Trine. "Recognition of Insufficient Competence—Nurses’ Experiences in Direct Involvement With Adolescent Children of Cancer Patients". Cancer Nursing 43, nr 1 (2020): 32–44. http://dx.doi.org/10.1097/ncc.0000000000000646.

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Theroux, Charleen I., Kylie N. Hill, Anna L. Olsavsky, James L. Klosky, Nicholas D. Yeager, Anthony Audino, Sarah H. O’Brien, Gwendolyn P. Quinn, Cynthia A. Gerhardt i Leena Nahata. "Satisfaction with Fertility Preservation Decisions among Adolescent Males with Cancer: A Mixed Methods Study". Cancers 13, nr 14 (16.07.2021): 3559. http://dx.doi.org/10.3390/cancers13143559.

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Half of male childhood cancer survivors experience treatment-related fertility impairment, which can lead to distress. Survivors often regret forgoing fertility preservation (FP), and decisional dissatisfaction is associated with a lower quality of life. This mixed methods study examined short-term FP decisional satisfaction among families of male adolescents newly diagnosed with cancer who received an initial fertility consult and completed an FP values clarification tool. One-two months after the FP decision, thirty-nine families completed the Brief Subjective Decision Quality measure. Decisional satisfaction was compared for participants (mothers, fathers, adolescents) who did and did not attempt to bank. Semi-structured interviews included the following question: How do you/your family feel about the banking decision now/in the future? Decisional quality scores were moderate-high (M = 5.74–6.33 out of 7), with no significant differences between non-attempter (n = 15) and attempter (n = 24) families (adolescents: p = 0.83, d = 0.08; mothers: p = 0.18, d = 0.45; fathers: p = 0.32, d = 0.44). Three qualitative themes emerged among non-attempter families: (1) satisfaction with decision (50% of participants), (2) acceptance of decision (60%), and (3) potential for future regret (40%). Satisfaction with decision was the only theme identified in attempter families (93%). Quantitively, short-term decisional satisfaction was high regardless of the banking attempt. However, the qualitative findings suggest that the experiences of families who did not bank may be more nuanced, as several participants discussed a potential for future regret, highlighting the importance of ongoing support.

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Patterson, Pandora, Kimberley R. Allison, Helen Bibby, Kate Thompson, Jeremy Lewin, Taia Briggs, Rick Walker i in. "The Australian Youth Cancer Service: Developing and Monitoring the Activity of Nationally Coordinated Adolescent and Young Adult Cancer Care". Cancers 13, nr 11 (28.05.2021): 2675. http://dx.doi.org/10.3390/cancers13112675.

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Adolescents and young adults (aged 15–25 years) diagnosed with cancer have unique medical and psychosocial experiences and care needs, distinct from those of paediatric and older adult patients. Since 2011, the Australian Youth Cancer Services have provided developmentally appropriate, multidisciplinary and comprehensive care to these young patients, facilitated by national service coordination and activity data collection and monitoring. This paper reports on how the Youth Cancer Services have conceptualised and delivered quality youth cancer care in four priority areas: clinical trial participation, oncofertility, psychosocial care and survivorship. National activity data collected by the Youth Cancer Services between 2016–17 and 2019–20 are used to illustrate how service monitoring processes have facilitated improvements in coordination and accountability across multiple indicators of quality youth cancer care, including clinical trial participation, access to fertility information and preservation, psychosocial screening and care and the transition from active treatment to survivorship. Accounts of both service delivery and monitoring and evaluation processes within the Australian Youth Cancer Services provide an exemplar of how coordinated initiatives may be employed to deliver, monitor and improve quality cancer care for adolescents and young adults.

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Haase, Joan E., Sheri L. Robb, Debra S. Burns, Kristin Stegenga, Brooke Cherven, Verna Hendricks-Ferguson, Lona Roll, Sharron L. Docherty i Celeste Phillips. "Adolescent/Young Adult Perspectives of a Therapeutic Music Video Intervention to Improve Resilience During Hematopoietic Stem Cell Transplant for Cancer*". Journal of Music Therapy 57, nr 1 (4.12.2019): 3–33. http://dx.doi.org/10.1093/jmt/thz014.

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Abstract This empirical phenomenology study reports adolescents/young adults (AYA) experiences of the therapeutic music video (TMV) intervention arm of a randomized controlled clinical trial (Children’s Oncology Group; COG-ANUR0631; R01 NR008583) during hospitalization for a hematopoietic stem cell transplant. A purposive subsample of 14 AYA were interviewed using a broad open-ended data-generating question about their TMV intervention experiences. At the end of each interview, we also asked AYA for suggestions on how to improve the TMV. Analysis of the narrative data resulted in four theme categories: (a) An Interwoven Experience of the Transplant and TMV Intervention; (b) TMV as a Guided Opportunity for Reflection, Self-Expression, and Meaning-Making; (c) Telling My Story: The Work of Deriving Meaning; and (d) A Way to Overcome the Bad Side of Cancer. AYA suggestions for improving the TMV are also summarized. Findings provide insight into ways the TMV supports AYA efforts to overcome distress and challenges by providing opportunities to reflect on what is meaningful, connect with others, and explore/identify personal strengths. Findings also inform our understanding about how the TMV may have functioned (i.e., mechanisms of action) to bring about significant change in AYA self-reported outcomes (i.e., positive coping, social support, and family function) for this trial.

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Polita, Naiara Barros, Willyane de Andrade Alvarenga, Ana Carolina Andrade Biaggi Leite, Jeferson Santos Araújo, Louise Bittencourt Paes Abreu dos Santos, Márcia Maria Fontão Zago, Francine de Montigny i Lucila Castanheira Nascimento. "Care provided by the father to the child with cancer under the influence of masculinities: qualitative meta-synthesis". Revista Brasileira de Enfermagem 71, nr 1 (luty 2018): 185–94. http://dx.doi.org/10.1590/0034-7167-2016-0671.

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ABSTRACT Objective: To synthesize and interpret findings and conclusions of qualitative research addressing the experience of the father in the care of the child with cancer. Method: Meta-synthesis of 16 qualitative studies from six databases, analyzed through taxonomic analysis. Results: Child and adolescent cancer have several repercussions on the daily life of the father, especially related to the stigma around the disease, the fear of the unknown and the social and family role. Faced with the illness and the need to care for the child, the father seeks to recover normality in the family and transitions between hegemonic masculine behaviors and practices culturally recognized as female. Final Considerations: The complex experience of the father, influenced by masculinities, was evidenced. The limitations regard the restricted understanding of the contextual specificities of the experiences, due to the limited characteristics of the parents and children described in the studies. The knowledge produced is useful to promote involvement of fathers in the care of the child, as well as to strengthen and assist him in this task.

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Kim, Min Ah, Jong Hyock Park, Hyeon Jin Park, Jaehee Yi, Eunmi Ahn, So Young Kim, Dong Wook Shin i in. "Experiences of peer exclusion and victimization, cognitive functioning, and depression among adolescent cancer survivors in South Korea." American Journal of Orthopsychiatry 88, nr 4 (2018): 441–49. http://dx.doi.org/10.1037/ort0000292.

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Mann, Karely, Austin R. Waters, Perla L. Vaca Lopez, Nicole Ray, Tomoko Tsukamoto, Heydon K. Kaddas, Echo L. Warner i in. "Financial burdens of insured adolescent and young adult cancer patients: A need for crowdfunding platforms, fundraisers, financial grants, and cost conversations with their cancer care team." Journal of Clinical Oncology 38, nr 29_suppl (10.10.2020): 83. http://dx.doi.org/10.1200/jco.2020.38.29_suppl.83.

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83 Background: Cancer patients in the United States often experience distress surrounding out of pocket costs from treatment. Adolescents and young adults (AYA) are more likely to be underinsured, skip care due to cost, go into debt, and file for bankruptcy after a cancer diagnosis than patients diagnosed at older ages. We conducted semi-structured interviews with AYA cancer patients and survivors to evaluate their experiences with health insurance, cancer costs and use of crowdfunding. Methods: Eligible participants were ages 18-39, diagnosed with cancer, and currently insured. Recruitment occurred largely through patient navigators at two large cancer centers from October 2019 to March 2020. Data was collected via individual semi-structured telephone interviews, which were analyzed for content. Questions were asked pertaining to crowdfunding platforms, fundraisers, satisfaction with current health insurance policy, and cost conversations with their cancer care team. Interviews were analyzed applying two rounds of thematic content analysis. Summary statistics were calculated for demographics. Results: Twenty-four interviews were completed, with more than half of participants being female (58%), most participants being Non-Hispanic White (79%), mean age at 26.5, and currently receiving cancer treatment (79%). Three themes emerged about AYAs’ experience with treatment costs and health insurance: 1) Even with insurance, cancer care was unexpectedly expensive and burdensome on financial wellbeing; 2) Conversations about cost with cancer care teams were brief and rare and 3) Crowdfunding platforms, fundraisers or financial grants were often used as financial safety nets, and did not cover all out of pocket costs. More than half of participants expressed interest in having cost conversations with their oncologist, nurse or social worker. All participants expressed a need for education on managing cancer costs and a particular interest in educational information on appeals and out of pocket costs. Conclusions: AYAs with cancer report unexpected costs and are interested in discussing this with their cancer care team. AYAs often receive money from fundraisers, financial grants or crowdfunding platforms to assist with the expenses of treatment. Discussions between cancer care teams and AYA patients about health insurance policies and cost saving mechanisms may help reduce out of pocket costs and reliance on external financial mechanisms.

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Guirguis, Steven, Margaret Fitch, Manjula Maganti, Abha A. Gupta, Norma D’Agostino, Chana Korenblum i Jennifer M. Jones. "Biopsychosocial Factors Associated with Supportive Care Needs in Canadian Adolescent and Young Adult Cancer Survivors". Journal of Clinical Medicine 10, nr 12 (15.06.2021): 2628. http://dx.doi.org/10.3390/jcm10122628.

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Adolescents and young adults (AYAs) represent an overlooked population in cancer survivorship care. Identifying the needs of AYAs can guide the development of tailored programs for this population. We conducted a cross-sectional descriptive analysis to identify biopsychosocial factors associated with AYA post-treatment supportive care needs and unmet needs using data obtained from the Experiences of Cancer Patients in Transitions Study of the Canadian Partnership Against Cancer, in collaboration with cancer agencies in the 10 Canadian provinces. The analysis focused on data from n = 530 AYAs between the ages of 18 and 34 who had undergone treatment within the past 5 years. Respondents reported a median of two moderate to big (MTB) physical needs (out of 9) and one unmet physical need, two MTB emotional needs (out of 6) with two unmet MTB emotional needs, and one (out of 5) practical need reported and one unmet MTB practical need. We found some common associations across supportive care domains. Income (lower) and more complex treatment were associated with high needs and unmet needs across the three domains. Respondents with a family doctor who was “very involved” in their cancer care had a lower number of unmet physical and emotional needs. Identifying those at risk of supportive care needs and developing tailored pathways in which they are proactively connected with tailored and appropriate resources and programs may help to reduce the number of unmet needs and improve cancer survivors’ quality of life.

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Mack, Jennifer W., Karen M. Fasciano i Susan D. Block. "Communication About Prognosis With Adolescent and Young Adult Patients With Cancer: Information Needs, Prognostic Awareness, and Outcomes of Disclosure". Journal of Clinical Oncology 36, nr 18 (20.06.2018): 1861–67. http://dx.doi.org/10.1200/jco.2018.78.2128.

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Purpose Communication about prognosis affects decisions patients and family members make about cancer care, and most patients say they want to know about their chances of cure. We sought to evaluate experiences with prognosis communication among adolescents and young adults (AYAs) with cancer. Patients and Methods We surveyed 203 AYAs with cancer age 15 to 29 years (response rate, 74%) treated at Dana-Farber Cancer Institute and their oncologists. Patients were approached within 6 weeks of diagnosis and asked to report on their prognosis communication preferences and experiences, their beliefs about likelihood of cure, and psychosocial outcomes of communication, such as trust (using an item from the Trust in Physician Scale), peace of mind (using select items from the Functional Assessment of Chronic Illness Therapy–Spiritual Well-Being Scale), and anxiety and depression (using the Hospital Anxiety and Depression Scale). Oncologists were asked to report the patient’s likelihood of cure. Results Most patients (83%, 167 of 203 patients) considered prognostic information to be extremely or very important. Patients who reported having received more extensive prognostic disclosure had higher odds of trust in the oncologist (odds ratio [OR], 1.30; 95% CI, 1.01 to 1.67; P = .05), peace of mind (OR, 2.13; 95% CI, 1.29 to 3.51; P = .002), and hope related to physician communication (OR, 1.27; 95% CI, 1.01 to 1.59; P = .04), after adjusting for patient sex, age, race or ethnicity, prognosis, and diagnosis. Disclosure was also associated with lower distress related to knowing about prognosis (OR, 0.65; 95% CI, 0.44 to 0.95; P = .03). However, a majority of patients (62%) reported prognostic estimates that exceeded those reported by physicians (McNemar P < .001). Conclusion Most AYAs with cancer value receiving prognostic information, which is positively associated with aspects of well-being. However, most overestimate chances of cure relative to oncologists, highlighting the importance of efforts to improve communication with this young population.

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Alpert, Ash B., Vikas Gampa, Susan Thomas Vadaparampil i Gwendolyn P. Quinn. "Trainings needs of allied health professionals caring for sexual and gender minority adolescents and young adults with cancer: A qualitative analysis." Journal of Clinical Oncology 39, nr 15_suppl (20.05.2021): e18532-e18532. http://dx.doi.org/10.1200/jco.2021.39.15_suppl.e18532.

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e18532 Background: Little is known about the training needs of allied health professionals who provide reproductive health counseling and other support services to sexual and gender minority (SGM) adolescent and young adult (AYA) people with cancer. Methods: A 28-item electronic survey with 4 qualitative items was distributed to 601 allied health professionals who had participated in a training focused on reproductive health needs in AYA people with cancer. Open-ended questions invited respondents to describe personal experiences, reservations, and suggestions for improving SGM AYA cancer care. Using an interpretive description methodology, two investigators independently analyzed qualitative survey responses noting thematic saturation. Together, they refined themes, resolving disagreements with consensus. Interrater reliability was 88%. Results: 321 people participated in the survey and 190 answered open-ended questions. Themes included: 1) an ecosystem exists around patients’ interactions with clinicians and institutions; 2) institutional and individual assumptions result in stigmatization of SGM AYA people with cancer; 3) accommodating patients and providing clinicians with relevant education and experiences are initial steps to decrease stigma; and 4) improving the care for SGM AYA people with cancer may require transformative approaches that incorporate intersectional frameworks and challenge current systems. Conclusions: Improving the quality of care for SGM AYA people with cancer will require systemic and institutional change as well as educational interventions.

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Yeo, Kee Kiat, Darcy E. Burgers, Katelynn Brodigan, Karen Fasciano, A. Lindsay Frazier, Katherine E. Warren i David A. Reardon. "Adolescent and young adult neuro-oncology: a comprehensive review". Neuro-Oncology Practice 8, nr 3 (18.02.2021): 236–46. http://dx.doi.org/10.1093/nop/npab001.

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Abstract Adolescent and young adult (AYA; ages 15-39) patients represent a population that experiences significant challenges in cancer care and research, exemplified by poorer clinical outcomes as well as unmet psychosocial and reproductive health needs. Despite central nervous system (CNS) tumors being one of the most common malignancies diagnosed in the age group, there is a clear paucity of AYA CNS tumor-specific publications, especially those related to the unique psychosocial and reproductive health needs of this population of patients. In this review, we examine various aspects of AYA oncological care including tumor biology, clinical outcome, clinical trials enrollment rate, site of care, unique psychosocial needs, and oncofertility. We assess the current state of these issues, highlight areas of deficiencies, and outline the steps needed to address these concerns. We emphasize the importance of comprehensive molecular testing as part of the diagnostic work-up, expansion of clinical trial availability, access to psychosocial care and oncofertility expertise, and the development of AYA-specific clinical research to define best practices and advancing care for this population.

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Fauske, Lena, Øyvind S. Bruland, Alv A. Dahl, Aase Myklebostad i Silje E. Reme. "Does the Lightning Process Training Programme Reduce Chronic Fatigue in Adolescent and Young Adult Cancer Survivors? A Mixed-Methods Pilot Study". Cancers 13, nr 16 (13.08.2021): 4076. http://dx.doi.org/10.3390/cancers13164076.

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Background: We report on a pilot intervention study exploring the efficacy of the Lightning Process® training programme for reducing chronic fatigue and improving health-related quality of life in cancer survivors. Methods: 13 adolescent and young adult cancer survivors previously treated for sarcoma or Hodgkin lymphoma were enrolled. A mixed-methods approach was applied. This involved the use of five validated patient-reported outcome measure (PROM) questionnaires at baseline and the three- and six-month follow-up points to obtain quantitative data. Semi-structured interviews were conducted after the intervention with emphasis on the participants’ experiences and outcomes. A reflexive thematic analysis was applied to the transcripts. Results: A significant reduction (p < 0.001) in the total fatigue score from baseline to the three- and six-month follow-up points was documented. The correlation coefficients between the various PROMs at baseline and the six-month follow-up point indicated considerable overlap between the measures. The qualitative findings of the interviews corresponded well with the PROM findings. Most participants experienced both less fatigue and explicit improvement in their energy level. The aspects of the intervention found to be particularly helpful were the theoretical rationale and the coping techniques mediated. Conclusion: These encouraging results here reported should be of interest to the general oncological community, although they require confirmation through a larger and controlled study.

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Moules, Nancy J., Andrew Estefan, Catherine M. Laing, Fiona Schulte, Gregory M. T. Guilcher, James C. Field i Douglas Strother. "“A Tribe Apart”: Sexuality and Cancer in Adolescence". Journal of Pediatric Oncology Nursing 34, nr 4 (18.03.2017): 295–308. http://dx.doi.org/10.1177/1043454217697669.

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This qualitative study employed hermeneutic phenomenology and narrative inquiry to examine the topic of sexuality and adolescents with cancer from the perspectives of survivors who had experienced cancer as adolescents. This investigation examined the potentially sensitive, disquieting, and often taboo issue of sexuality in the interest of optimizing wellness in young people, and, ultimately, in the health of adults. Understanding the adolescent body as a sensitive, sexual, and developing self can enrich our understanding of adolescent cancer and promote best health care and practices, examining ways that we might mitigate the long-term effects of arrested or delayed development of sexual identity. In this article, we discuss phase 1 of the study, which used hermeneutics as the method of inquiry. Findings included a general experience of adolescents having a sense of “losing themselves” while at the same time finding themselves in a new light. Other findings include the connection between sexuality, self, and identity; the unique “tribe” of adolescents with cancer; the necessity for sexuality to take a backseat to cancer; the changing mirror images from self and others; sexuality and fertility; and, ultimately, that sexuality is a relational experience.

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Ferrari, Andrea, David Thomas, Anna R. K. Franklin, Brandon M. Hayes-Lattin, Maurizio Mascarin, Winette van der Graaf i Karen H. Albritton. "Starting an Adolescent and Young Adult Program: Some Success Stories and Some Obstacles to Overcome". Journal of Clinical Oncology 28, nr 32 (10.11.2010): 4850–57. http://dx.doi.org/10.1200/jco.2009.23.8097.

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Adolescent and young adult (AYA) patients seem to be in a sort of no-man's land, halfway between the two different worlds of pediatric and adult medical oncology and bearing the brunt, in terms of inclusion in clinical trials and quality of professional care, of the lack of integration between these two worlds. This article discusses the different organization models of care used in pediatric oncology (mainly family-focused) and in adult medical oncology (disease-focused). There is a growing awareness that these models are not ideally suited to the complex needs of AYA patients, which require a different, new, patient-focused multidisciplinary approach. A comprehensive, multipronged effort is required to bridge the gap in the care of AYA patients, with the ultimate challenge of creating a new discipline, AYA oncology. In this article, we review the experiences of AYA oncology programs in Europe, North America, and Australia, focusing on similarities and differences in strategy, as well as the major challenges and opportunities faced by these programs. Among the most important factors for the successful establishment of an AYA oncology service are the degree of engagement of both pediatric and adult medical oncologists, the philanthropic support of powerful charities, and the role of dedicated professionals across a range of disciplines in driving the development of services for AYA patients.

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Varga-Tóth, Andrea, Gábor Németh i Edit Paulik. "A szexuális nevelésről orvosi szemmel a hazai adatok és a nemzetközi irányelvek tükrében". Orvosi Hetilap 160, nr 13 (marzec 2019): 494–501. http://dx.doi.org/10.1556/650.2019.31359.

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Abstract: Introduction: The prevention of early sexual life and its unwanted consequences is a worldwide problem. National and international surveys have shown that adolescents have their first sexual intercourse at a younger age. Aim: The study aimed to determine the way of sexual education of young people provided by physicians – general practitioners, paediatricians, obstetricians, gynaecologists etc. – in accordance with the results of a questionnaire-based study, the experiences gained during the interactive education and the suggestions of international guidelines dealing with sexual education. Method: Self-administered questionnaire-based study was performed among 13–18-year-old girls attending primary or secondary school (N = 868) between 2009 and 2016. The sexual activity of adolescent girls, their knowledge related to contraception and sexually transmitted infectious diseases, gynaecological (e.g., cancer screening) experiences were measured before sexual education performed by a gynaecologist. Results: Every 4th girl had the first sexual act at the age of 14 or before, but at the same time their sexual knowledge was incomplete and there was a significant proportion of those who already have had sex but have never had a gynaecological examination. Conclusion: The results highlighted the educational deficiencies of reproductive life, which is a complex task to solve, to address the changing approach of national healthcare and education systems, to adopt and follow scientific evidence-based guidelines. All health-care workers who are in contact with adolescents during their work must be involved in the sexual education. It is essential to continue incorporating sex education into education from early childhood to young adult age. Orv Hetil. 2019; 160(13): 494–501.

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Steinberg, Dara M., Rebecca A. Santiago, Molly L. Tanenbaum, Ginger Depp Cline i Nicole M. Schneider. "“It Made Me the Person I Am Today…”: Survivors of Childhood, Adolescent, and Young Adult Cancer Reflect on Their Experiences". Journal of Adolescent and Young Adult Oncology 9, nr 2 (1.04.2020): 239–46. http://dx.doi.org/10.1089/jayao.2019.0122.

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Cheng, Ya-Chun, Chu-Yu Huang, Wei-Wen Wu, Shu-Chuan Chang, Jane Lee-Hsieh, Shu-Yuan Liang i Su-Fen Cheng. "The lived experiences of aboriginal adolescent survivors of childhood cancer during the recovering process in Taiwan: A descriptive qualitative research". European Journal of Oncology Nursing 22 (czerwiec 2016): 78–84. http://dx.doi.org/10.1016/j.ejon.2016.03.005.

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Bradbury, Angela R., James J. Dignam, Comfort N. Ibe, Sogyong L. Auh, Fay J. Hlubocky, Shelly A. Cummings, Melody White, Olufunmilayo I. Olopade i Christopher K. Daugherty. "How Often Do BRCA Mutation Carriers Tell Their Young Children of the Family's Risk for Cancer? A Study of Parental Disclosure of BRCA Mutations to Minors and Young Adults". Journal of Clinical Oncology 25, nr 24 (20.08.2007): 3705–11. http://dx.doi.org/10.1200/jco.2006.09.1900.

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Purpose Predictive genetic testing for adult-onset diseases is generally discouraged until the age at which interventions are believed to be helpful. Yet, many BRCA mutation carriers discuss their results with their children. This study describes the prevalence and experiences of parental communication of BRCA results to children under the age of 25 years old. Patients and Methods Forty-two BRCA mutation carriers completed semistructured telephone interviews assessing self-reported disclosure to offspring and parent experiences with disclosure. Qualitative responses were coded for themes. χ2 tests and logistic regression analyses with robust variance estimates were used to evaluate parent and child characteristics associated with disclosure. Results Fifty-five percent of parents reported discussing hereditary risk of cancer with at least one child. By parent report, 49% of the 86 offspring learned of their parents genetic test results or the hereditary cancer risk. Offspring age was strongly associated with disclosure (P = .001), and the majority of adolescent and adult children learned of the familial mutation or the hereditary risk of cancer. Parents reported that some offspring did not appear to understand the significance of the information shared, and that some offspring had initial negative reactions to disclosure. Physician (14%) and genetic counselor (21%) involvement in parent decisions to disclose were low. Conclusion Children of BRCA mutation carriers learn of their parents genetic test results many years before preventive interventions are indicated. Further research is needed to examine how young individuals understand this information and its psychosocial impact and influence on subsequent lifestyle and health behaviors.

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Cavalcanti, Sandra Lopes, i Divanise Suruagy Correia. "Adolescentes com neoplasia: desenho como expressão de emoções". Revista de Enfermagem UFPE on line 13, nr 4 (19.04.2019): 893. http://dx.doi.org/10.5205/1981-8963-v13i4a236688p893-903-2019.

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RESUMOObjetivo: identificar significados sobre a neoplasia em desenhos de adolescentes acometidos pela enfermidade. Método: trata-se de um estudo qualitativo, descritivo, com três adolescentes assistidos por uma associação de pais e amigos leucêmicos. Usaram-se o desenho dos adolescentes como instrumento de pesquisa e a teoria de análise semiótica de imagens. Consideraram-se a narrativa do desenho e a figura em si, observando-se: cor, traçado, forma, elementos constitutivos e representação da figura. Resultados: destaca-se que, nos desenhos, predominaram tons de cinzas e pouco colorido, o que demonstra medo e insegurança, sentimentos que são comuns em enfermidades e que traduzem a situação vivenciada pelos adolescentes portadores de doença limitadora com riscos de ser terminal. Revela-se que as figuras humanas aparecem com traços finos e de forma infantil para a idade e, apesar de terem sido estimulados a verbalizar sobre sua doença, poucos falaram e as falas confirmaram os resultados obtidos por meio dos desenhos. Conclusão: mostrou-se, pelo uso do desenho, a percepção da vivência dos adolescentes com câncer, revelando seus sentimentos quanto ao momento vivenciado, podendo ser usado como processo terapêutico auxiliar. Descritores: Neoplasias; Adolescente; Emoções Manifestas; Desenhos; Doença; Psicologia. ABSTRACT Objective: to identify meanings about neoplasia in drawings of adolescents affected by the disease. Method: this is a qualitative, descriptive study with three adolescents assisted by an association of leukemic parents and friends. The design of adolescents was used as a research tool and the theory of semiotic image analysis. The narrative of the drawing and the figure itself were considered, observing: color, stroke, shape, constituent elements and representation of the figure. Results: it is noteworthy that, in the drawings, gray tones predominated and little colored, which shows fear and insecurity, feelings that are common in diseases and that translate the situation experienced by adolescents with limiting disease with risks of being terminal. It is revealed that human figures appear with fine features and childishly for the age, and although they were encouraged to verbalize about their illness, few spoke and the statements confirmed the results obtained through the drawings. Conclusion: the perception of the adolescents' experience with cancer was revealed through the use of the drawing, revealing their feelings about the moment they experienced and could be used as an auxiliary therapeutic process. Descriptors: Neoplasias; Adolescent; Emotions Manifests; Graphics; Disease; Psychology. RESUMEN Objetivo: identificar significados sobre la neoplasia en dibujos de adolescentes acometidos por la enfermedad. Método: se trata de un estudio cualitativo, descriptivo, con tres adolescentes asistidos por una asociación de padres y amigos leucémicos. Se utilizaron el diseño de los adolescentes como instrumento de investigación y la teoría de análisis semiótico de imágenes. Se consideró la narrativa del dibujo y la figura en sí, observándose: color, trazado, forma, elementos constitutivos y representación de la figura. Resultados: se destaca que, en los dibujos, predominaron tonos grises y poco coloreado, lo que demuestra miedo e inseguridad, sentimientos que son comunes en enfermedades y que traducen la situación vivenciada por los adolescentes portadores de enfermedad limitadora con riesgos de ser terminal. Se revela que las figuras humanas aparecen con rasgos finos y de forma infantil para la edad y, a pesar de haber sido estimulados a verbalizar sobre su enfermedad, pocos hablaron y las palabras confirmaron los resultados obtenidos por medio de los dibujos. Conclusión: se mostró, por el uso del dibujo, la percepción de la vivencia de los adolescentes con cáncer, revelando sus sentimientos en cuanto al momento vivenciado, pudiendo ser usado como proceso terapéutico auxiliar. Descritores: Neoplasias; Adolescente; Emoción Expresada; Dibujos; Enfermedad; Psicología.

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Torres, Raimundo Augusto Martins, Karlla Da Conceição Bezerra Brito Veras, Maria Vilani Cavalcante Guedes, Maria Célia de Freitas, Edine Dias Pimentel Gomes i Samuel Ramalho Torres Maia. "Diálogos com jovens sobre câncer de mama: uma abordagem fenomenológica". Revista Recien - Revista Científica de Enfermagem 10, nr 32 (15.12.2020): 124–34. http://dx.doi.org/10.24276/rrecien2020.10.32.124-134.

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Objetivou-se nessa pesquisa discutir sobre corpo, saúde e doença em obras de Maurice Merleau Ponty, buscando implicações na produção nos discursos de jovens escolares sobre o tema: Câncer de Mama. O estudo constituiu-se de uma investigação qualitativa, do tipo relato de experiência, apresentando uma abordagem crítico-reflexiva, baseado na fenomenologia de Maurice Merleau-Ponty, que foi discutido sobre a temática “Câncer de Mama”. A amostra constitui-se de 45 jovens escolares. A experiência ocorreu no mês de outubro de 2019, veiculada pelo programa “Em Sintonia com Saúde - S@S” através da Web Rádio AJIR. A abordagem fenomenológica, com o novo pensar holístico, visando o estudo do ser humano em sua totalidade de vida, contribuiu na compreensão fenomenológica pela pesquisadora do conhecimento das juventudes sobre câncer de mama, possibilitando, então, aos jovens o conhecimento do corpo como protagonista destas experiências, reproduzindo vivências e significados que amparam a sua formação como um novo ser no mundo.Descritores: Neoplasia da Mama, Educação em Saúde, Adolescente. Dialogues with young people about breast cancer: a phenomenological approachAbstract: The objective of this research was to discuss about body, health and disease in works by Maurice Merleau Ponty, looking for implications in the production in the speeches of young students on the theme: Breast Cancer. The study consisted of a qualitative investigation, of the experience report type, presenting a critical-reflexive approach, based on the phenomenology of Maurice Merleau-Ponty, which was discussed on the theme “Breast Cancer”. The sample consists of 45 young schoolchildren. The experience took place in October 2019, broadcast by the program “Em Sintonia com Saúde - S@S” through Web Rádio AJIR. The phenomenological approach, with the new holistic thinking, aiming at the study of the human being in his whole life, contributed to the phenomenological understanding by the researcher of the youths' knowledge about breast cancer, thus enabling young people to know the body as the protagonist of these experiences, reproducing experiences and meanings that support their formation as a new being in the world.Descriptors: Breast Neoplasm, Health Education, Adolescent. Diálogos con jóvenes sobre el cáncer de mama: un enfoque fenomenológicoResumen: El objetivo de esta investigación fue discutir sobre el cuerpo, la salud y la enfermedad en los trabajos de Maurice Merleau Ponty, buscando implicaciones en la producción de los discursos de jóvenes estudiantes sobre el tema: Cáncer de mama. El estudio consistió en una investigación cualitativa, del tipo de informe de experiencia, que presentó un enfoque crítico-reflexivo, basado en la fenomenología de Maurice Merleau-Ponty, que se discutió sobre el tema "Cáncer de mama". La muestra consta de 45 niños en edad escolar. La experiencia tuvo lugar en octubre de 2019, transmitida por el programa "Em Sintonia com Saúde - S@S" a través de Web Rádio AJIR. El enfoque fenomenológico, con el nuevo pensamiento holístico, dirigido al estudio del ser humano en toda su vida, contribuyó a la comprensión fenomenológica por parte del investigador del conocimiento de los jóvenes sobre el cáncer de mama, permitiendo así que los jóvenes conozcan al cuerpo como el protagonista de estos experiencias, reproduciendo experiencias y significados que apoyan su formación como un nuevo ser en el mundo.Descriptores: Neoplasia de Mama, Educación en Salud, Adolescente.

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Ngwenya, Nothando, Julia Ambler i Moherndran Archary. "Qualitative situational analysis of palliative care for adolescents with cancer and HIV in South Africa: healthcare worker perceptions". BMJ Open 9, nr 1 (styczeń 2019): e023225. http://dx.doi.org/10.1136/bmjopen-2018-023225.

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ObjectivesThe unmet palliative care need is intensified in resource-limited countries where there is inequitable access to healthcare and adolescents and young adults (AYA) fall between the cracks of paediatric and adult services. We aimed to examine palliative care for AYA with cancer and/or HIV in South Africa.DesignIndividual and small group interviews using process mapping.SettingData were collected between November 2016 and March 2017 with staff from government hospitals, hospices and clinics from three provinces of South Africa.ParticipantsHealth and social care professionals (n=30) (eg, physicians, nurses, social workers, psychologists) from KwaZulu-Natal, Western Cape and Gauteng provinces.MethodsIn this qualitative situational analysis study, participants were recruited to interviews and process mapping used to try and identify palliative care pathways of AYA with palliative care needs. We developed a thematic framework using a deductive approach to analyse the interview data.ResultsPalliative care pathways were not easily identifiable, ambiguous and varied and participants reported on their experiences and perceptions of service provision. Participants expressed that resource challenges limited the service provision. A need for nurse prescribing of pain relief at community level was mentioned as AYA are reluctant to use hospitals and clinics. Lack of (1) palliative care education among professionals, (2) public awareness and (3) adolescent-specific care posed a challenge to service provision.ConclusionsThe changing burden of HIV and increase in cancer prevalence calls for integration of palliative care in mainstream health services. Despite good policies, the pragmatic aspect of training professionals will influence a change in practice. The main task will be to absorb palliative care philosophy and practice at all levels of care to avoid overburdening the care system and to integrate it in community care programmes.

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