Background: Many adolescents and young adults (AYAs) aged 15-39 years describe struggling with cancer-related cognitive impairment (CRCI) after treatment. CRCI (e.g., memory, concentration, and learning difficulties) often causes distress, diminishes quality of life (QoL), and impedes young adults' participation in academic, recreational, and social experiences. Yet, CRCI is poorly understood in AYAs and options to prevent or treat this burdensome side effect are lacking. Based on growing evidence suggesting that physical activity (PA) may enhance cognitive function in older adults, individuals with diseases of cognition, and breast cancer survivors, research exploring links between PA and CRCI in AYAs is warranted. Thus, the purpose of this observational, mixed methods thesis was to explore how AYA cancer survivors experience and cope with CRCI, taking into consideration potential predisposing factors (i.e., medical, psychological), interventional strategies (i.e., PA), and outcomes (i.e., QoL). Methods: Over a nine-month period, 90 AYAs who had completed primary cancer treatment self-referred; 49 were eligible and enrolled into the study. Of these, 46 participants (M_age=31.4±5.4; 91.3% female; 39.1% blood cancer) completed an online survey and three web-based neuropsychological tests; semi-structured interviews were conducted on a rolling basis with a sub-set (n=16) who reported clinically meaningful CRCI. Quantitative data were analyzed descriptively and qualitative data were analyzed thematically. Results: Overall, participants were active based on their self-reported moderate-to-vigorous intensity PA (MVPA; M=27.3±20.6) and relative to scale ranges, they reported moderate levels of depressive symptoms, stress, fatigue, and quality of life (M=12.1±5.5; M=21.1±7.2; M=25.2±11.5; M=68.8±18.3, respectively). On average, participants reported clinically meaningful CRCI (M=44.7±17.4), and as compared to normative values, their neuropsychological test scores indicated poor executive functioning and processing speed, but not working memory. Bivariate correlations between cognitive function (self-reported and objective) and medical characteristics (i.e., time since diagnosis, cancer stage, chemotherapy exposure) had small-to-moderate effect sizes. Small-to-large correlations were observed between cognitive function and psychological factors (i.e., depressive symptoms, stress, fatigue, QoL). Finally, correlations between cognitive function and MVPA were favourable, though effect sizes were small. Moreover, qualitative data provided insight into how AYAs experience and cope with their cognitive impairment, which was summarized within four themes: (1) descriptions and interpretations of the CRCI phenomenon, (2) effects of CRCI on day-to-day life and QoL, (3) cognitive-behavioural self-management strategies, and (4) recommendations for improving care. Conclusion: Results confirm that cancer can impact AYAs' cognitive function and have detrimental effects for their daily life and overall QoL. AYAs reported using various cognitive-behavioural self-management strategies, including PA; taken together with quantitative data, findings suggest that PA may be a promising strategy to cope with CRCI. However, high-quality experimental research is needed to confirm this association, test the processes by which this may occur, as well as to determine optimal PA dosages/contexts for managing CRCI.

No description available.

La population des adolescents et des jeunes adultes (AJAs 15-25 ans) atteints de cancer représentent environ 1700 nouveaux cas, par an, en France. L'apparition d'une maladie cancéreuse, potentiellement létale, au cours de l'adolescence, vient impacter à différents niveaux les jeunes patients. La vie est rythmée selon les examens médicaux, traitements et/ou hospitalisations. La scolarité ou l'activité professionnelle sont bien souvent suspendues, reportées voire même remaniées. Alors qu'à cette période de développement les adolescents tentent de se séparer de leurs parents, tant affectivement, que financièrement et socialement, on observe bien souvent un mouvement de retour vers les figures parentales. De plus, la maladie vient directement impacter le corps qui est, entre autre, au centre des préoccupations des adolescents. Ainsi, les problématiques adolescentes sont à la croisée de la maladie et du développement dit « normal » de l'adolescent. Par ailleurs, nous savons que l'adolescence est la période des premières expériences en termes de relations amoureuses, sexuelles et de consommations de substances (alcool, tabac, cannabis). C'est également une période propice aux addictions comportements, telles que les jeux vidéo et internet et les troubles des conduites alimentaires. Cette recherche a pour objectif de décrire les consommations d'alcool, de tabac et de cannabis chez une population d'adolescents et de jeunes adultes atteints de cancer, ainsi que les conduites alimentaires et en ligne. Cette étude vise également à décrire et comprendre le vécu de ces jeunes et les stratégies adaptatives auxquelles ils ont recours pour faire face à la fois à l'annonce de la maladie et aux traitements. Une méthodologie mixte a été utilisée. Le volet quantitatif, utilise un ensemble de questionnaires évaluant les stratégies de coping, la symptomatologie anxio-dépressive, les consommations de tabac, d'alcool et de cannabis, ainsi que les conduites alimentaires et le comportement en ligne. Cette étude propose un suivi de cohorte durant la phase de traitement curatif (N=66) ; 6 mois après le début des traitements (N=20) où l'on met en relation les stratégies adaptatives initiales ainsi que les consommations et conduites alimentaires et en ligne. Le volet qualitatif, propose une exploration du vécu personnel de six jeunes patients confrontés à la maladie et aux traitements à l'aide de l'Interpretative Phenomenological Analysis. Les analyses quantitatives ont montré que la grande majorité des participants ne présentaient pas de symptomatologie anxio-dépressive durant les traitements anti-cancéreux et qu'ils se tournaient globalement vers des stratégies centrées sur le problème (acceptation et réinterprétation positive). Une minorité de participants déclarent consommer de l'alcool (3%), du tabac (1,5%) et du cannabis (4,5%). Les participants déclarant avoir des préoccupations concernant l'alimentation représentent 9% de l'échantillon et enfin, environ 19% des participants déclarent un usage problématique d'internet avec de possibles conséquences. Six mois après le début des traitements, l'intensité de la symptomatologie anxio-dépressive a tendance à diminuer. Il n'existe pas de différences significatives entre les scores de conduites à risque au T1 et T2 et les stratégies d'ajustement restent inchangées entre la première et la deuxième passation. Dans les premiers mois de prise en charge, les adolescents et jeunes adultes ne présentent pas de symptomatologie anxio-dépressive structurée. Leur modalité de consommation ne présente pas de risque concernant l'observance aux traitements anti-cancéreux. Enfin, les éléments recueillis à travers ce travail et notamment les analyses qualitatives, permettent de mieux comprendre et d'appréhender le vécu des jeunes patients traités pour une maladie cancéreuse. / The population of adolescents and young adults (AJAs - 15-25 years) with cancer represent approximately 1,700 new cases per year in France. Over The appearance of a potentially lethal cancerous disease during adolescence is affecting young patients at different levels. According to medical examinations, treatments and / or hospitalizations life is punctuated. School or professional activity are often suspended, postponed or even reworked. While in this period of development, adolescents try to separate themselves from their parents, emotionally, financially and socially, there is often a movement back to the parent figures. Moreover, the disease directly impacts the body which is, among other things, at the center of adolescents' concerns. Thus, adolescent problems are at the crossroads of the disease and the so-called "normal" development of the adolescent.Nevertheless, we know that adolescence is the first experience period in terms of romantic relationships, sexual relations and consumption of substances (alcohol, tobacco, cannabis). It is also a period conducive to addictions behaviors, such as video games and internet and eating disorders. The objective of this research is to describe alcohol, tobacco and cannabis consumption in a population of adolescents and young adults with cancer, as well as eating and online behaviors. This study also aims to describe and understand the experiences of these young people and the adaptive strategies they use to deal with both the announcement of the disease and treatments. A mixed methodology was used. The quantitative component uses a set of questionnaires evaluating coping strategies, depressive-anxiety symptoms, tobacco, alcohol and cannabis use, as well as eating behaviors and online behavior. This study proposes a cohort follow-up during the curative treatment phase (N 66); 6 months after the beginning of treatments (N20) where the initial adaptive strategies as well as the consumption and behavior of food and online are related. The qualitative component provides an exploration of the personal experiences of six young patients with disease and treatment using the Interpretative Phenomenological Analysis. Quantitative analyzes showed that the vast majority of participants did not exhibit symptomatology anxio-depressive during anti-cancer treatments and that they generally turn to oriented strategies problems (acceptance and positive reinterpretation). A minority of participants reported using alcohol (3%), tobacco (1.5%) and cannabis (4.5%). Participants claiming to have food disorder count for 9% of the sample, and finally, about 19% of participants report problematic use of the Internet with possible consequences. Six months after the onset of treatment, the intensity of anxiety-depressive symptoms tends to decrease. There are no significant differences between scores of lines at risk at T1 and T2 and the adjustment strategies remain unchanged between the first and the second passes. In the first few months of treatment, adolescents and young adults have no structured anxio-depressive symptoms. Their mode of consumption does not present any risks regarding adherence to anti-cancer treatments. Finally, the information gathered through this work, and in particular the qualitative analyzes, make it possible to understand better and apprehend the experience of young patients treated for a cancerous disease.

Background: Identity construction is the predominant developmental task in adolescence and young adulthood. Disabling hearing loss (HL) exacerbates the psychosocial challenges faced by adolescents and young adults (AYA) in their identity construction. The primary goal of this research study was to describe how AYA with disabling HL feel about and perceive their identity. Further, to understand the aspects underlying identity construction, with a focus on self-perception, navigating disability, social roles and relations, and community assimilation. Methodology: A qualitative interpretive phenomenological approach was adopted. Participants were a purposive sample of 5 Deaf and Hard-of-hearing AYA, aged 15 to 19 years. All participants were enrolled in schools for the deaf in the Western Cape and partook in semi-structured phenomenological conversations, where they narrated detailed accounts of their lived experiences with identity construction. Results: Interpretive phenomenological analysis was used to formulate themes. The superordinate themes of creating a self-concept, belonging, stress and being deaf emerged from participants' narratives. Identity construction occurs concurrently at several levels. At the personal level, deaf AYA create self-conceived ideals of who they are (Creating a self-concept), at relational level identity is nurtured through person-to-person and person-to-group interactions (Belonging). At societal level deaf AYA ascertain their position as individuals within the larger society (Being deaf). Protective factors, enabling factors and barriers that threaten positive identity construction, audiological health, and the psychosocial wellbeing of deaf AYA were identified. Overall, findings from this study indicate that the experience of identity construction for AYA with HL is layered and laden with challenges. Identity formation, albeit portrayed as a process of differentiation, is a balancing act. Identity is self-defined and equally exists in a collective identity with others. Identity construction also subjected participants to stress arising from the emotional burdens of HL, stigmatisation, and resultant psychological effects. Amid unique challenges, deaf AYA consciously developed coping mechanisms, some constructive and others detrimental to their audiological health, all while negotiating their position in the larger society. Conclusion: Study findings appeal to individuals in the caring professions such as audiologists, teachers, educational psychologists, and social workers to understand the nuances of identity construction for the successful transitional care of deaf adolescents moving into adulthood. Counselling needs to be responsive to the needs of deaf AYA, identity domains should be upheld in the provision of person-centered care and possible trajectories for identity crisis should be evaluated when considering school placement. Benefits of group counselling and peer support groups should be explored. There is a need for interventions that curb negative audiological health behaviours through assertiveness training and self-advocacy. The micro implementation of employment equity policies and legislation is critical to ensure the realisation of AYA's prospective identities in the South African workforce. Findings call for the reorientation of audiological rehabilitation and strengthening of interdisciplinary collaboration to meet the psychosocial needs of AYA with disabling HL.

No description available.

No description available.

The after-high-school outcomes for individuals with autism spectrum disorder (ASD) and their families are less than desirable. The current study employed an exploratory sequential mixed methods design in order to enhance understanding of the family adaptation process during transition. First, a qualitative study was conducted in order to understand the stressors, external and internal support, coping strategies, and family adaptation outcomes during transition, from a parent’s perspective, using the ABCX model. Thirteen parents of adolescents and young adults with ASD were interviewed. These parents reported a continually high level of stress due to normative strains and ASD-related demands. They clearly described the tangible, emotional, informational, and internal resources both received and needed. Parents, as active agents in their children’s lives, have their own views towards transition, philosophy, and ways of coping. Even though many of them reported negative experiences, these parents also found new meanings and happiness in their lives. Based on the literature review and the qualitative results, a quantitative study was then developed, which applied the ABCX model to understand the predictors of good parent transition outcomes and investigate the mediating mechanism between stressors and parent transition outcomes. At the indicator level, autism severity, mental health crisis/challenging behaviors, filial obligation, general social support, transition planning quality, parent-teacher alliance, parenting efficacy, problem-focused coping, avoidance-focused coping, and optimism were important predictors of the four benchmarks of parents’ outcomes (i.e., parents’ burden, parents’ transition experience, parents’ subjective health, and family quality of life). At the structural level, optimism, emotion-coping strategies, and resources mediated the relationships between stressors and parents’ outcomes. Research and practical applications are discussed. Findings across the two studies led to identification of key factors that influence the outcomes of parents of adolescents and young adults with ASD, as well as an understanding of the complex relationships among the predictors. The results build upon existing empirical and theoretical work related to the transition of families of adolescents and young adults with ASD. Recommendations for future research and clinical practices are discussed.

Submitted by Cláudia Bueno (claudiamoura18@gmail.com) on 2015-11-19T16:38:58Z No. of bitstreams: 2 Dissertação - Rodrigo Cesar Assis Caixeta - 2014.pdf: 3427166 bytes, checksum: 4e0cd6ad305c26afada6419c7fc8663c (MD5) license_rdf: 23148 bytes, checksum: 9da0b6dfac957114c6a7714714b86306 (MD5) / Approved for entry into archive by Luciana Ferreira (lucgeral@gmail.com) on 2015-11-20T13:08:46Z (GMT) No. of bitstreams: 2 Dissertação - Rodrigo Cesar Assis Caixeta - 2014.pdf: 3427166 bytes, checksum: 4e0cd6ad305c26afada6419c7fc8663c (MD5) license_rdf: 23148 bytes, checksum: 9da0b6dfac957114c6a7714714b86306 (MD5) / Made available in DSpace on 2015-11-20T13:08:46Z (GMT). No. of bitstreams: 2 Dissertação - Rodrigo Cesar Assis Caixeta - 2014.pdf: 3427166 bytes, checksum: 4e0cd6ad305c26afada6419c7fc8663c (MD5) license_rdf: 23148 bytes, checksum: 9da0b6dfac957114c6a7714714b86306 (MD5) Previous issue date: 2014-06-24 / Coordenação de Aperfeiçoamento de Pessoal de Nível Superior - CAPES / HPV, BV and CI are common conditions in adolescents and young women. Studies have reported that BV and CI can be cofactors for the acquisition and persistence of HPV, enabling the development of cytological abnormalities precursor of cervical cancer. The aim of this study was to estimate the prevalence of HPV, BV and IC in adolescents and young women and to verify that these conditions are associated with the detection of cytological abnormalities in cervical smears in adolescents and young women. Were included samples of sexually active patients and users of the Unified Health System (SUS) who underwent cervical screening by the conventional method. The cervical specimens were analyzed at the Center for Clinical Analysis Rômulo Rocha, Faculty of Pharmacy/UFG, by qualified professionals following strict quality control. The detection of HPV-DNA was made by PCR using pools of primers PGMY09/PGMY11. The diagnosis of BV was established from the observation of the presence of 20% or more of clue cells in cervical smears. The IC was assessed by counting the number of leukocytes in cervical smears in five noncontiguous with increased microscopic fields 1000X average, according Castle et al. (2001). Statistical analyzes with hierarchical logistic and control of confounding variables regression model were performed. The magnitude of association was estimated by calculating the odds ratio (OR) with confidence intervals (CI*) of 95%. 251 samples were included, with 54,9% (138/251) of adolescents aged between 15 and 19 years and 45,1% (113/251) of young women aged between 20 and 25 years. Positive results for cytological abnormalities accounted for 9,5% (24/251) of all cervical smears. The diagnosis of atypical squamous cells of undetermined significance (atypical squamous cells of undetermined significance - ASCUS) (50,0% 12/24) and squamous intraepithelial lesions (low grade squamous intraepithelial lesion - LSIL) (29,1 % 7/24) were more frequent. The overall prevalence of HPV, BV, and CI 44,2% (111/251), 41,0% (103/251) and 83,2% (209/251), respectively. Of the variables investigated, VB (OR = 2,46 CI*: 1,26 to 3,80; p: 0,006) and the detection of abnormal cytological diagnosis (OR = 1.36 CI*: 1.07 to 1.74; p: 0.013) were associated with HPV positivity in multivariate analysis. Whereas the detection of cytological abnormalities there was a significant association with HPV and BV detected in the same patient (OR = 2,59 CI*: 1,09 to 6,20; p: 0,032) and for the detection of HPV, BV and CI together (OR = 3,58 CI*: 1,06 to 12,15; p: 0,040), however, they didn’t remain independently associated in bivariate analysis. BV and cytological abnormalities were independently associated with HPV infection in adolescents and young women. HPV, BV and CI in cervical smears can indicate high possibility to detect cytological abnormalities in adolescents and young women. / HPV, VB e IC são condições frequentes em adolescentes e mulheres jovens. Estudos têm relatado que VB e IC podem ser cofatores para a aquisição e persistência do HPV, possibilitando o desenvolvimento de anormalidades citológicas precursoras do câncer do colo uterino. Assim, o objetivo desse estudo foi estimar a prevalência de HPV, VB e IC em adolescentes e mulheres jovens e verificar se estas condições estão associadas à detecção de anormalidades citológicas em esfregaços cervicais em adolescentes e mulheres. Foram incluídas amostras de pacientes sexualmente ativas e usuárias do Sistema Único de Saúde (SUS) que realizaram exame citopatológico através do método convencional. Os esfregaços cervicais foram analisados no Centro de Análises Clínicas Rômulo Rocha, da Faculdade de Farmácia/UFG, por profissionais qualificados e seguindo rigoroso controle de qualidade. A detecção de DNA do HPV foi feita por PCR, utilizando os pools de primers PGMY09/PGMY11. O diagnóstico de VB foi realizado a partir da observação da presença de 20% de células indicadoras nos esfregaços cervicais. A IC foi avaliada através da média da contagem do número de leucócitos nos esfregaços cervicais, em cinco campos microscópicos não adjacentes com aumento de 1000X, segundo Castle et al. (2001). Foram realizadas análises estatísticas com modelo de regressão logística hierárquica e controle de variáveis de confusão. A magnitude de associação foi estimada através do cálculo de odds ratio (OR) com intervalos de confiança (IC*) de 95%. Foram incluídas 251 amostras, sendo 54,9% (138/251) de adolescentes com faixa etária entre 15 e 19 anos e 45,1% (113/251) de mulheres jovens com idades entre 20 e 25 anos. Resultados positivos para anormalidades citológicas representaram 9,5% (24/251) do total de esfregaços cervicais. Os diagnósticos de células escamosas atípicas de significado indeterminado (Atypical Squamous Cells of Undetermined Significance – ASC-US) (50,0% 12/24) e lesão intraepitelial escamosa de baixo grau (Low grade Squamous Intraepithelial Lesion - LSIL) (29,1% 7/24) foram mais frequentes. As prevalências totais de HPV, VB e IC foram de 44,2% (111/251), 41,0% (103/251) e 83,2% (209/251), respectivamente. Das variáveis investigadas, VB (OR = 2,46 IC*: 1,26-3,80, p: 0,006) e a detecção de diagnóstico citológico anormal (OR = 1,36 IC*: 1,07-1,74, p: 0,013) foram associadas com a positividade para HPV pela análise multivariada. Considerando a detecção de anormalidades citológicas, houve uma associação significativa com o HPV e VB detectado no mesmo paciente (OR = 2,59 IC*: 1,09-6,20, p: 0,032), bem como para a detecção de HPV, VB e IC em conjunto (OR = 3,58 IC*: 1,06-12,15, p: 0,040), no entanto, eles não permaneceram independentemente associadas na análise bivariada. VB e esfregaço cervical anormal foram independentemente associados a infecção por HPV em adolescentes e mulheres jovens. HPV, VB e IC em esfregaços cervicais pode indicar uma maior possibilidade de detectar anormalidades citológicas em adolescentes e mulheres jovens.

SAMMANFATTNING Bakgrund: Ungdomar och unga vuxna under cancerbehandling är i behov av specialanpassad och ålderslämplig vård då deras åldersgrupp genomgår unika livsutvecklande milstolpar i övergången från barndom till att bli vuxen som påverkas av cancersjukdomen. En störd livsutveckling kan resultera med långsiktiga negativa konsekvenser som kan påverka ungdomar och unga vuxna även efter avslutad behandling.   Syfte: Att undersöka ungdomar och unga vuxnas upplevelser av sin psykosociala situation under cancerbehandling.   Metod: Litteraturstudie med systematisk ansats med beskrivande design. Litteratursökningen använde MEDLINE, CINAHL, och PsycINFO. Resultatet baserades på elva kvalitativa studier samt en kvantitativ studie med kvalitativ bearbetning av ett fritextsvar publicerade mellan år 2014–2020.   Resultat: Ungdomar och unga vuxna värderade bibehållandet av ett normalt liv och strävade efter att uppnå detta med olika strategier. Självständighet och känslan för den egna identiteten kunde störas. Stöttning från anhöriga, närstående, cancerdrabbade jämnåriga, och vårdpersonal var av betydelse men inte alltid tillräckligt. Upprymdhet upplevdes över att avsluta cancerbehandlingen men också en oro inför framtiden efteråt.   Slutsats: Rapporterade upplevelser av psykosociala påfrestningar under cancerbehandlingen leder till slutsatsen att kunskap om hur dessa utmaningar kan bemötas på ett specialanpassat och ålderslämpligt vis är bristfällig. En vidare fördjupad förståelse för ungdomar och unga vuxnas psykosociala upplevelser under cancerbehandling från ytterligare forskning kan potentiellt förbättra sjukvårdens möjlighet till att erbjuda adekvat vård.   Nyckelord: Ungdomar och unga vuxna (AYA), Cancerbehandling, Psykosocial, Erfarenheter. / ABSTRACT Background: Adolescents and young adults undergoing cancer treatment are in need of specially adapted and age appropriate care since their age group undergoes unique life-developing milestones in the transition period between childhood and adulthood that may be affected by cancer. A disrupted life development may result in long-term negative consequences that may affect adolescents and young adults even after the end of cancer treatment.   Aim: This study aimed to examine adolescents and young adults’ experiences of their psychosocial situation during cancer treatment.   Method: Literature review with descriptive design. The literature search used MEDLINE, CINAHL, and PsycINFO. The result was based on eleven qualitative studies and a quantitative study with qualitative processing of a free text answer published between 2014-2020.   Result: Adolescents and young adults valued the maintenance of a normal life and strived to achieve this with different strategies. Independence and the feeling for one's own identity could be disturbed. Support from family, friends, cancer-stricken peers, and healthcare staff was of importance, but not always enough. Exaltation was experienced over ending the cancer treatment but also a concern for the future afterwards.   Conclusion: Reported experiences of psychosocial stress during cancer treatment lead to the conclusion that knowledge of how these challenges can be met in a specially adapted and age-appropriate way is deficient. A further in-depth understanding of adolescents and young adults' psychosocial experiences during cancer treatment from further research may potentially improve healthcare's ability to offer adequate care.   Keywords: Adolescents and Young Adults (AYA), Cancer Treatment, Psychosocial, Experiences.

Due to the high survival rates of many young cancer patients and a high risk of second tumors, fear of cancer recurrence (FCR) can cause serious impairment for adolescent and young adult (AYA) cancer patients. The aim of this study is to analyze the structure of the Fear of Disease Progression Questionnaire (FoP-Q-12) to better understand the construct of FCR.We performed a cross-sectional survey on a sample of AYA patients aged 15–39 years with different tumor entities. FCR was measured using the FoP-Q-12, and a network analysis was conducted to examine the relationship of FCR symptoms. The importance of individual items in the network was determined using centrality analyses. A total of 247 AYA patients (81.8% female, median age 31.0 years) participated in the study. The mean FCR score in the sample was 35.9 (SD = 9.9). The majority of patients reported having high FCR (59.5%), according to the established cut-off. The two questionnaire items with the strongest association related to fears about work, and the most central symptom was the fear of serious medical interventions. The centrality of emotional issues in the sample indicates that these symptoms should be prioritized in the development of interventions targeting FCR. Further research should address this topic with larger samples of patients in other age groups and in longitudinal studies.