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Purpose: The main objective of this study was to identify the facilitators of and barriers to the transition from pediatric to adult care for adolescents and young adults (AYAs) with cancer according to physicians and nurses working in oncology. The secondary objectives were (1) to explore the viewpoints of health care professionals (HCPs) on this transition and (2) to discover HCP's needs and the needs they perceive among AYAs and their parents. Methods: Semistructured interviews were conducted with 19 HCPs to discover their experiences with pediatric to adult care transitions. Thematic analysis was then conducted. Results: Participants reported that transitioning is a complex process influenced by numerous barriers and facilitators, which can be classified into four themes: (1) balancing the needs and relationships of the three actors involved in the transition process, (2) factors that enable HCPs to determine the ideal time for transitions, (3) institutional and organizational barriers and facilitators that challenge HCPs, and (4) HCPs' reflections on defining and improving the transition process. Conclusion: Beyond the lack of human and financial resources, which hinders the structuring of transitions, our results suggest the need for a paradigm shift. That is, the position given to AYAs in pediatrics before the transition needs to evolve so that they are gradually positioned at the center of the relationship with HCPs and, therefore, are the focus of care and the transition process. This will enable them to acquire the skills, knowledge, and autonomy needed for a successful transition to adult care.
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CONTEXT: To identify the characteristics of adolescent young carers (AYCs), studies in the literature have compared them with non-AYCs, but without considering that in the latter group, some face the illness of a relative whereas others do not. OBJECTIVES: The aims of the study were (1) to identify the characteristics of AYCs as compared with adolescents who are not young carers but are facing the illness/disability of a relative, or adolescents not facing the illness/disability of a relative, and (2) to identify factors associated with being a carer within adolescents facing a relative illness. METHODS: A total of 4000 high school students (grades 10-12, mainly aged 15-17 years, 568 identified as AYCs, 1200 as adolescents facing the illness/disability of a relative without being a carer and 2232 as adolescents not facing the illness/disability of a relative) completed a self-reported questionnaire assessing sociodemographic characteristics, illness/disability in the family, caregiving activities (MACA-YC18 and specific emotional support scale), quality of life (KIDSCREEN-10) and mental health (GHQ-12). Chi-square tests, ANOVAs and logistic regressions were performed. RESULTS: AYCs scored lower on the quality-of-life measure compared with adolescents not facing the illness/disability of a relative (p < .001) and had poorer mental health compared with adolescents facing the illness/disability of a relative without being a carer and adolescents not facing the illness/disability of a relative (p < .001). Logistic regressions showed that youth were more at risk to be an AYC when they were females (p < .001), when they had an extracurricular job (p < .001), spoke another language at home (p < .01), had siblings and were one of the oldest siblings (p < .001), and when the relative had a serious or chronic physical illness (p < .001) and lived with the youth (p < .001). CONCLUSIONS: These results highlight the importance of distinguishing AYCs, adolescents facing the illness/disability of a relative without being a carer and adolescents not facing the illness/disability of a relative to better describe AYCs, recognizing that as the level of care provided might change over time, adolescents facing the illness/disability of a relative without being a carer could become AYCs or inversely. The factors that emerged could be used by professionals to better identify AYCs.
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Cuidadores , Calidad de Vida , Femenino , Humanos , Adolescente , Masculino , Cuidadores/psicología , Salud Mental , Encuestas y CuestionariosRESUMEN
AIM: This work explores the experiences and meaning attributed by parents who underwent the decision-making process of withholding and/or withdrawing life-sustaining treatment for their newborn. METHODS: Audio-recorded face-to-face interviews were led and analysed using interpretative phenomenological analysis. Eight families (seven mothers and five fathers) whose baby underwent withholding and/or withdrawing of life-sustaining treatment in three neonatal intensive care units from two regions in France were included. RESULTS: The findings reveal two paradoxes within the meaning-making process of parents: role ambivalence and choice ambiguity. We contend that these paradoxes, along with the need to mitigate uncertainty, form protective psychological mechanisms that enable parents to cope with the decision, maintain their parental identity and prevent decisional regret. CONCLUSION: Role ambivalence and choice ambiguity should be considered when shared decision-making in the neonatal intensive care unit. Recognising and addressing these paradoxical beliefs is essential for informing parent support practices and professional recommendations, as well as add to ethical discussions pertaining to parental autonomy and physicians' rapport to uncertainty.
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Unidades de Cuidado Intensivo Neonatal , Cuidados Paliativos , Recién Nacido , Lactante , Femenino , Humanos , Privación de Tratamiento , Toma de Decisiones , Padres/psicologíaRESUMEN
BACKGROUND: Digital health technologies have expanded tremendously in the last two decades, creating an emerging research and clinical field. They are regarded as cost-effective, and their use in healthcare is prioritized by many countries. However, the constant evolution of these technologies has led to an abundance of related literature. Thus, we conducted an umbrella review to identify and characterize digital supportive care interventions for patients with cancer and their relatives. METHODS: A preregistered umbrella review was conducted (PROSPERO registration number CRD42022333110). Five databases were searched (Embase, PsycINFO, PubMed, CINAHL, and the Cochrane Library). To be considered, studies had to be systematic reviews or meta-analyses, be performed on pediatric or adult patients with cancer or survivors or their relatives, report results on web-based or app-based supportive care interventions, and measure psychological, functional, or behavioral variables or quality of life related to cancer. The methodological quality of the studies was assessed using the AMSTAR-2 tool. FINDINGS: Twenty eligible studies were identified. Most of the included studies reported results from adult patients with cancer. Globally, digital interventions were shown to be effective for physical activity in patients with cancer but had mixed results regarding emotional outcomes and quality of life. Additionally, a lack of methodological quality was noted for most of the included reviews. DISCUSSION: Digital supportive care interventions could be an effective tool in cancer care for some outcomes. Recommendations have been formulated for further research in this field using adapted methodologies for the development of digital health interventions.
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Aplicaciones Móviles , Neoplasias , Adulto , Humanos , Niño , Cuidadores , Salud Digital , Calidad de Vida , Neoplasias/terapia , InternetRESUMEN
PURPOSE: Previous research conducted among caregivers of patients with cancer revealed a poor Quality of Life (QoL) and high levels of distress. In addition to the influence of patients' clinical state, caregivers' appraisals of patients' difficulties should be considered as another predictor of poor caregiver health. This study aims to test the association between caregivers' health (i.e., QoL, depression and anxiety) and their perception of patients' difficulties. METHODS: 199 caregivers of patients with cancer completed an online survey based on questionnaires measuring their QoL, depression and anxiety, as well as their perception of patients' cognitive, emotional, functional, psychiatric and interpersonal difficulties. RESULTS: It was found that the appraisal of patients' impairments in all domains was mainly correlated with poor caregivers' QoL (Pearson correlations ranged from 0.14 to 0.45; p ≤ .05). Furthermore, linear regression analyses showed that, after controlling for age, sex education level, professional activity and living with or without the patient, the appraisal of patients' interpersonal abilities (ß = 0.25, p ≤ .05), psychiatric difficulties (ß = -0.25, p ≤ .01) and living with the patient were the main predictors of caregivers' QoL. CONCLUSION: This study highlights the importance of better understanding the role of patients' social and psychiatric difficulties when examining caregivers' health. This indicates the importance of providing support and offering information to caregivers to alert them to the role of patients' social and psychiatric difficulties on their own health. Future studies should better understand how these difficulties are associated with caregivers' perception of identity/sociability alterations in patients and how caregivers cope with these changes.
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The usefulness of hypnosis in patients with obesity needs to be better understood in terms of various outcomes, in addition to weight loss. The aim of this research was to investigate the effects of hypnosis and self-hypnosis in combination with nutrition education for patients with obesity, as opposed to nutrition education alone, on the secondary outcomes of quality of life (QoL), coping strategies, and self-esteem within a randomized controlled trial (RCT). Eighty-two participants were included in this study (84.3% were women), with 41 in each group. Further, 70 participants had completed treatment. The intervention consisted of eight group sessions (about one every two weeks). Participants completed self-reported questionnaires assessing their QoL, coping strategies, and self-esteem (SF-36, CISS, SEI) before and after the intervention. Non-parametric analyses were performed. Both groups had comparable characteristics at inclusion (sociodemographic information, clinical information, and scores for the self-reported scales). At eight months (i.e. two months after intervention completion), patients from the hypnosis group used more task-oriented coping (p < .001), less emotion-oriented coping (p < .01) and distraction (p < .05), and had more energy/less fatigue (p < .001) compared to the group who did not undergo hypnosis. Other improvements were observed in the hypnosis group, but there were no significant differences compared with the non-hypnosis group in terms of QoL dimensions and general self-esteem. In conclusion, hypnosis and self-hypnosis in combination with nutrition education seem to be promising interventions to help patients deal with obesity, especially by improving their coping strategies.
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Hipnosis , Femenino , Humanos , Masculino , Proyectos Piloto , Hipnosis/métodos , Obesidad , Calidad de Vida , Encuestas y CuestionariosRESUMEN
Young Adult Carers (YAC) are informal carers aged 18-25 years. This is an unrecognized population. The present systematic review aims to respond to: (1) how YAC are identified in research; (2) the prevalence of YAC; (3) the characteristics of YAC; and (4) how to support YAC. Five electronic databases (Google Scholar, PsycArticle, PsycInfo, Psychology and Behavioral Sciences Collection, and PubMed) were searched for studies, scientific articles, and gray literature on YAC published prior to January 18, 2021. The quality of included studies was assessed using the Crow Critical Appraisal Tool, and a narrative method was used to underline major findings. Twenty-three studies were included and revealed that there were several ways to identify YAC, resulting in heterogeneous prevalence. Nine themes were highlighted for YAC characteristics (way into caring; care receiver; caring responsibilities; amount of caring; self-identification as a carer; living arrangement; physical, psychological, and adaptative outcomes; interpersonal relationships; education and employment); and three for YAC support (needs, available support services, and recommendations). The findings showed the diversity of YAC experiences. Although YAC expressed several needs, there are few or no support services devoted to them. More research is needed to improve political awareness. Systematic review registration: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42021231882, identifier: CRD42021231882.
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To identify perceived factors related to intimacy following HSCT.Qualitative descriptive design.Patients diagnosed with hematological cancer, 6 months into their HSCT recovery, and their partners.Semi-structured interviews were conducted with 18 participants (nine patients and their partners). A thematic analysis was carried out.Couples reported various obstacles to intimacy, such as emotional obstacles (i.e. negative emotions, emotional mismatch), the length of the disease, its treatments and side effects, and the patient's physical condition. Couples also reported facilitators to intimacy, such as using emotional facilitators (e.g. showing empathy), fostering open communication or sharing common experience of the disease.This study highlights specific factors that influence couples' intimacy in the context of HSCT.Implications for Psychosocial Providers: Couples' intervention delivered in cancer care should be adapted by focusing on specific factors that maintain or enhance couples' intimacy.
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Trasplante de Células Madre Hematopoyéticas , Relaciones Interpersonales , Humanos , Investigación Cualitativa , Conducta Sexual/psicología , Parejas Sexuales/psicologíaRESUMEN
Despite novel drugs and autologous HCT, MM remains incurable, with short survival in patients with poor biological characteristics. Allo HCT may be curative in some patients but is hampered by high rates of toxicity and relapse. We hypothesized that bortezomib (BTZ), with its anti-myeloma and immunologic properties, could improve PFS and cGVHD after allo HCT in newly diagnosed MM patients. In this prospective phase II study, we included 39 young (≤50 years) and high-risk patients who received a tandem auto-allo HCT followed by BTZ. Patients had prospective minimal residual disease (MRD) evaluations using Next-Generation Flow cytometry prior to allo HCT, prior BTZ and every 3 months for 2 years. With a median follow-up of 48 months, we report PFS and OS at 5 years of 41% and 80%, with a non-relapse mortality of 12%. Incidences of grade II-IV aGVHD at 12 months and moderate/severe cGVHD at 2 years were 26% and 57%. In a multivariate analysis model including cytogenetics, ISS and MRD status, MRD positivity prior to allo HCT (HR 3.75, p = 0.037), prior BTZ (HR 11.3, p = 0.018) and 3 months post-BTZ initiation (HR 9.7, p = 0.001) was highly predictive of progression. Peritransplant MRD assessment thus strongly predicts disease progression.
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Trasplante de Células Madre Hematopoyéticas , Mieloma Múltiple , Receptores Quiméricos de Antígenos , Aloinjertos , Bortezomib/farmacología , Bortezomib/uso terapéutico , Trasplante de Células Madre Hematopoyéticas/efectos adversos , Humanos , Persona de Mediana Edad , Mieloma Múltiple/diagnóstico , Mieloma Múltiple/terapia , Recurrencia Local de Neoplasia , Neoplasia Residual/diagnóstico , Estudios Prospectivos , Resultado del TratamientoRESUMEN
Quality of life (QoL) is an essential measure when assessing health interventions. Most early interventions for preschool children on the spectrum evaluate the effects on autism symptoms. However, researchers increasingly believe that good interventions should also improve the QoL of these children. Domains of QoL among preschool children on the autism spectrum have not previously been researched. We interviewed adults on the spectrum to explore early childhood experiences that made their lives satisfying. Our data revealed four major themes: interests, environmental regularity, sensory differences and social interactions. This study provides the first insights on aspects of life important to pre-schoolers on the spectrum. Findings will contribute to developing items for a measure of QoL among this population.
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Trastorno del Espectro Autista , Trastorno Autístico , Trastornos Generalizados del Desarrollo Infantil , Adulto , Trastorno del Espectro Autista/diagnóstico , Niño , Preescolar , Intervención Educativa Precoz , Humanos , Calidad de VidaRESUMEN
BACKGROUND: Pediatric brain tumor survivors (PBTS) present a high risk for emotional and behavioral disorders. When addressing these difficulties, differences in study designs; variety of and disagreement about diagnoses; and intricate links of emotional, behavioral, and cognitive issues may complicate the interpretation of studies and probably also the work of clinicians. We aimed to survey the difficulties perceived by physicians and mental health professionals in their practice and their interest in developing a new evaluative tool. METHODOLOGY: We surveyed 29 health professionals involved in the follow-up of this population. They completed questionnaires about their clinical practice (difficulties, needs, activities) and indicated diagnosis hypotheses and treatment plans on a clinical case developed for this study. RESULTS: Emotional and behavioral disorders were reported as difficult to assess for 93% of participants. The overlap of symptoms (90%) and the lack of an adapted diagnostic framework (90%) were the main reasons mentioned. Respectively 93%, 90%, and 65% of participants would at least "often" make referrals to psychological (93%), neuropsychological (90%), and psychiatric (65%) assessments and care. Family and group therapy were less common as was drug management. All participants were in favor of creating a tool to help with diagnosis and treatment. When responding to a clinical case, the heterogeneity of participants' responses highlighted their issues in diagnosing and managing these patients. CONCLUSION: This survey exemplifies the difficulties of health professionals related to the evaluation and management of affective and behavioral disorders experienced by PBTS. It underlines the need to help professionals by initiating systematic assessment strategies with this vulnerable population.
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Neoplasias Encefálicas , Médicos , Problema de Conducta , Neoplasias Encefálicas/terapia , Niño , Humanos , Salud Mental , SobrevivientesRESUMEN
OBJECTIVE: This systematic review aims to investigate the support children provide in the case of a relative's cancer. METHODS: Searches were performed on four electronic databases (Embase, PsycINFO, PubMed and ScienceDirect) to identify studies that report on the support provided by children to a relative diagnosed with cancer. Two researchers independently evaluated the eligibility of the studies and cross-checked them for accuracy. The Crowe Critical Appraisal Tool (CCAT) was used to assess the quality of the studies included. RESULTS: Out of the 10948 articles screened, 30 were included in this review. Results highlighted that cancer provokes changes in families, such as shifts in roles and increased responsibilities for the youth. Children often provided significant support to their sick relative and family members, including practical, emotional, and medical support such as household duties, medical assistance, companionship, and distraction. However, they were designated as young carers in only one study. The support provided was associated with negative effects such as stress and fatigue, and with positive effects such as increased empathy and independence. Children wished to support their family but also named several needs, such as time for themselves and the opportunity to enjoy their childhood. CONCLUSION: The results of this systematic review highlight the importance of taking into account the support provided by young people facing the cancer of a relative and designating them as young carers. Much remains to be accomplished to officially recognize their role and to support them properly.
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Cuidadores , Familia , Adolescente , Niño , Emociones , Composición Familiar , HumanosRESUMEN
BACKGROUND: Transitioning from pediatric to adult healthcare can be challenging and lead to severe consequences if done suboptimally. The Transition Readiness Assessment Questionnaire (TRAQ) was developed to assess adolescent and young adult (AYA) patients' transition readiness. In this study, we aimed to (1) document the psychometric properties of the French-language version of the TRAQ (TRAQ-FR), (2) assess agreements and discrepancies between AYA patients' and their primary caregivers' TRAQ-FR scores, and (3) identify transition readiness contributors. METHODS: French-speaking AYA patients (n = 175) and primary caregivers (n = 168) were recruited from five clinics in a tertiary Canadian hospital and asked to complete the TRAQ-FR, the Pediatric Quality of Life Inventory™ 4.0 (PedsQL™ 4.0), and a sociodemographic questionnaire. The validity of the TRAQ-FR was assessed using confirmatory factor analyses (CFA). Agreements and discrepancies were evaluated using intraclass correlation coefficients and paired-sample t tests. Contributors of transition readiness were identified using regression analyses. RESULTS: The five-factor model of the TRAQ was supported, with the TRAQ-FR global scale showing good internal consistency for both AYA patients' and primary caregivers' scores (α = .85-.87). AYA patients and primary caregivers showed good absolute agreement on the TRAQ-FR global scale with AYA patients scoring higher than primary caregivers (ICC = .80; d = .25). AYA patients' age and sex were found to be contributors of transition readiness. CONCLUSIONS: The TRAQ-FR was found to have good psychometric properties when completed by both AYA patients and primary caregivers. Additional research is needed to explore the predictive validity and clinical use of the TRAQ-FR.
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Pediatría , Transición a la Atención de Adultos , Adolescente , Canadá , Niño , Humanos , Psicometría , Calidad de Vida , Reproducibilidad de los Resultados , Encuestas y Cuestionarios , Adulto JovenRESUMEN
BACKGROUND: Insomnia affects up to 63% of patients with cancer. Cognitive behavioral therapy for insomnia (CBT-I) is considered to be the non-pharmacological gold standard treatment, but it remains underutilized in France. Self-administered interventions offer new ways to overcome some of the barriers that restrict access to efficacious supportive care. OBJECTIVE: To assess the feasibility, among French adult cancer outpatients, of a validated Quebec video-based, self-administered, cognitive behavioral therapy for insomnia (VCBT-I). METHODS: A pre-post design with quantitative measures (Insomnia Severity Index, Edmonton Symptom Assessment System, Treatment Perception Questionnaire) and qualitative measures (semi-structured interviews) was used. RESULTS: One hundred and seventy-three cancer outpatients were self-screened for insomnia, and 57% (n=99) reported significant symptoms. Among them, 80% (n=79) agreed to participate in the VCBT-I. The download rate of the VCBT-I was 78% (n=62/79). Several technical and contextual barriers to the delivery and the applicability of the VCBT-I emerged. However, participants reported a high level of satisfaction, and some valuable benefits at post-immediate intervention (increased knowledge about sleep, better quality of sleep, and higher acceptance of the burden of insomnia), regardless of whether or not they still had insomnia. DISCUSSION: This study confirms that there is a demand for a VCBT-I, which was perceived as appropriate by a sample of French cancer outpatients with insomnia, but it also highlights some limitations in terms of implementation and practicality. Remote professional support appears to be a core need in order to address these issues and personalize the guidance process.
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Terapia Cognitivo-Conductual , Neoplasias , Trastornos del Inicio y del Mantenimiento del Sueño , Adulto , Estudios de Factibilidad , Humanos , Neoplasias/complicaciones , Neoplasias/terapia , Pacientes Ambulatorios , Sueño , Trastornos del Inicio y del Mantenimiento del Sueño/etiología , Trastornos del Inicio y del Mantenimiento del Sueño/terapia , Resultado del TratamientoRESUMEN
After a child is diagnosed with autism, parents' relationships are impacted as they reorganize their daily lives to support their child's specific needs. A better understanding of parenting couples' adaptation is needed to accompany them during this period. This qualitative study explored couples' experiences after their child's autism diagnosis. An inductive thematic analysis among ten couple interviews (N = 20) revealed three key themes: emotional experiences, external support, and adaptation. Overall, the quality of couples' relationships before having a child influenced their relationship after the diagnosis. In general, parents presented complementary coparenting roles, while different opinions about how to raise the child strained their relationship. Helping parents adapt to a diagnosis together could prove to be important for future interventions and research.
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Trastorno del Espectro Autista/diagnóstico , Relaciones Interpersonales , Responsabilidad Parental/psicología , Padres , Adaptación Psicológica , Adulto , Trastorno Autístico , Niño , Comunicación , Humanos , Masculino , Persona de Mediana Edad , Relaciones Padres-Hijo , Investigación CualitativaRESUMEN
Purpose: This study aimed to: (1) describe the domains and levels of unmet needs of young adult survivors of childhood acute lymphoblastic leukemia (cALL) with comorbidities, and (2) to explore the factors associated with higher levels of unmet needs. Unmet need was considered as supportive care needs not met. Methods: The most vulnerable cALL survivors from the PETALE study cohort completed the Short-Form Survivor Unmet Needs Survey, the Brief Pain Inventory and the 15D instrument of health-related quality of life. Demographic and clinical information, including comorbidities, were obtained from medical records or self-reporting. The participants' needs and contributing factors to their needs were evaluated using nonparametric tests. Results: Of the 72 participants, 9 (13%) reported moderate/high levels of overall unmet needs. "Worry about earning money" (56%) and "Dealing with feeling tired" (51%) were the most frequent unmet needs (all levels combined). The factors associated significantly with any domain of unmet needs were: having a comorbidity, reporting altered functional health status, high ALL risk status, pain, age (<26 years), and having previously received psychological support. Conclusion: A minority of young adult survivors of cALL with comorbidities interviewed reported moderate/high levels of unmet needs. However, financial concerns and emotional health and relationship are the two domains of greatest need. Survivors with altered health condition are most at risk of experiencing moderate/high levels of unmet needs. If confirmed in larger samples, interventions should target modifiable contributors of unmet needs such as physical health and comfort, fatigue, and emotional health.
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Leucemia-Linfoma Linfoblástico de Células Precursoras , Calidad de Vida , Adulto , Comorbilidad , Estudios Transversales , Humanos , Leucemia-Linfoma Linfoblástico de Células Precursoras/terapia , Encuestas y Cuestionarios , Sobrevivientes , Adulto JovenRESUMEN
OBJECTIVE: Our aim was to explore the differences between women and their partners on information need, emotional adjustment, and breast reconstruction (BR) decision-making after breast cancer diagnosis. A second aim was to explore these differences regarding surgery type (mastectomy vs immediate BR). METHODS: Women newly diagnosed with a first nonmetastatic breast cancer and having a mastectomy were invited to fill out online questionnaires, in conjunction with their partners, before mastectomy. Questionnaires assessed their information need (Patient Information Need Questionnaire), emotional adjustment (Profile of Mood States), motivations to have BR or not, shared decision-making (Shared Decision-Making Questionnaire), and partner influence in BR decision-making. RESULTS: Thirty (15 women and their partners) people took part in the study. Women and partners had similar levels of information need, emotional adjustment, and shared decision-making. However, partners did not entirely perceive why BR is wished or not by the women. Furthermore, partners of women having a mastectomy alone had higher scores of mood disturbance and a greater need for information, compared to partners of women having an immediate BR (P < .05). Likewise, men expressed a greater need for disease-oriented information than their loved ones (P < .05). CONCLUSIONS: This is the first study to highlight differences in couples' experiences of breast cancer diagnosis and BR decision-making before mastectomy. Partners express an important need for information and do not entirely perceive why BR is wished or not by their loved ones. An online tool providing information to both women and partners could help them in breast cancer care pathway and BR decision-making.
OBJECTIF: Notre objectif était d'explorer les différences entre les femmes et leur partenaire selon leur besoin d'information, leur adaptation émotionnel et la prise de décision d'une reconstruction mammaire (RM) après un diagnostic de cancer du sein. Notre second objectif était d'investiguer les différences selon le type de chirurgie (mastectomie simple versus RM immédiate). MÉTHODE: L'étude a été proposée à des femmes qui venaient de recevoir un diagnostic de primo-cancer et qui allaient avoir une mastectomie. Ces femmes et leur partenaire ont été invitées à compléter des questionnaires en ligne mesurant leur besoin d'information (PINQ), leur adaptation émotionnelle (POMS), leurs motivations à avoir ou non une RM, la décision médicale partagée (SDM-Q-9) et l'influence du partenaire sur la décision d'avoir une RM. RÉSULTATS: Trente personnes ont participé à l'étude (15 femmes et leur partenaire). Tous avaient des besoins d'information similaires, d'adaptation émotionnelle et de décision médicale commune. Cependant, les partenaires ne perçoivent pas pleinement pourquoi leur femme souhaite avoir une RM ou non. De plus, les partenaires de femmes qui vont avoir une mastectomie simple ont des scores plus élevés de détresse émotionnelle et un besoin d'information plus important que les partenaires de femmes qui vont avoir une RM immédiate (P < 0.05). De même, les hommes expriment un plus grand besoin d'information au sujet de la maladie, que leur conjointe (P < 0.05). CONCLUSIONS: Il s'agit de la première étude sur les différences de vécu des couples face au diagnostic de cancer du sein et à la prise de décision d'une RM avant la mastectomie. Les partenaires expriment un grand besoin d'information et ne perçoivent pas entièrement pourquoi leur femmes souhaite avoir une RM ou non. La création d'un outil d'information en ligne destiné aux femmes et à leur partenaire pourrait les aider dans le parcours de soins et dans la prise de décision d'avoir ou non recours à une RM.
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Purpose: This study aimed to explore and identify the factors associated with problematic substance use (alcohol, tobacco, and cannabis) and behavioral addictions (internet and eating disorders) over time in adolescents and young adults (AYAs) treated for cancer. Methods: AYAs newly diagnosed with cancer, 15-25 years of age, completed a questionnaire during their hospitalization (T1), assessing their consumption of alcohol, tobacco, and cannabis (The Alcohol Use Disorders Identification Test; The Smoking Behavior Questionnaire; and The Cannabis Abuse Screening Test), their internet use (The Internet Addiction Test), their body preoccupations (The Eating Attitudes Test), as well as their coping strategies (Brief COPE) and emotional adjustment (The Hospital Anxiety and Depression Scale). Questionnaires were completed again 6 months later (T2). Results: Seventy-three AYAs were included at T1 and 21 AYAs at T2. Nearly one out of two (46.58%) AYAs had a problematic substance use or behavioral addiction after cancer diagnosis (T1). Problematic use of internet was frequently reported (23.29%), as well as harmful alcohol consumption or addiction (16.44%) and cannabis dependence (12.33%). The main factor related to problematic substance use was being older, while the main factor related to behavioral addiction was having a higher anxiety score. Substance use as a coping strategy was used more frequently by AYAs with problematic substance use and emotional support as a coping strategy was used more frequently by AYAs with a behavioral addiction. Conclusions: High rates of problematic substance use and behavioral addiction were reported in our sample. AYAs surveyed had high problematic use of cannabis and high internet use. Attention to substance use and addictive behaviors is recommended to ensure optimal care.
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Adaptación Psicológica/fisiología , Adolescente , Adulto , Conducta Adictiva/psicología , Femenino , Humanos , Masculino , Trastornos Relacionados con Sustancias/psicología , Adulto JovenRESUMEN
OBJECTIVE: Despite the impact that diagnosis and treatment can have on patients' sexual health, very little research has been conducted on the impact of colon cancer on sexual health. The aim of this systematic review was to assess the prevalence of sexual dysfunctions in colon cancer and describe the sociodemographic, clinical, and psychological correlates of sexual dysfunction. METHODS: Four electronic databases (PsycINFO, PubMed, AcademicSearchPremier, Cochrane Library) were searched for studies reporting sexual adjustment outcomes for colorectal cancer patients from January 1990 to July 2019. RESULTS: Of the 380 articles screened, 14 were included in this review. Sexual function is affected by colon cancer: patients' sexual satisfaction decreases significantly, as does the frequency of sexual intercourse. There is an increase in sexual problems (desire, excitement, or pleasure disorders). Male gender, advanced age, distress, and the comorbidities increase sexual disorders. In addition, it appears that partner distress negatively affects patients' sexual health. Taking such difficulties into account appears key for these patients and their partners. They could benefit from better care throughout treatment and in remission. CONCLUSION: The results of this systematic review highlight the importance of taking an interest in the sexual health of patients with colon cancer.
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Neoplasias del Colon/complicaciones , Satisfacción Personal , Conducta Sexual/psicología , Disfunciones Sexuales Fisiológicas/psicología , Disfunciones Sexuales Psicológicas/psicología , Salud Sexual/estadística & datos numéricos , Adulto , Neoplasias del Colon/psicología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Orgasmo/fisiología , Parejas Sexuales/psicologíaRESUMEN
BACKGROUND: One in 3 women with breast cancer will have a mastectomy and face the decision of whether to have breast reconstruction (BR). This decision is shared by the women and their physician, as well as discussed with her partner. OBJECTIVE: This study aimed to understand the decision-making process of BR through a lexical analysis of the women and their partners' discourse. A secondary aim was to identify the differences between the couples when the woman had, or did not have, BR. METHODS: We conducted semistructured interviews with 9 women, and their partners, who underwent a mastectomy after a first episode of breast cancer. A lexical analysis using IRaMuTeQ software was carried out. RESULTS: The analysis yielded 3 classes, each one being more represented by one of the different BR categories. Class 1 contained words reflecting a preoccupation with body modification. Class 2 was related to the surgery and its consequences. Words contained in class 3 were about the couples' issues regarding surgeries, treatments, and medical care. The question of temporality emerged particularly in classes 2 and 3. CONCLUSIONS: This study underlines the differences in the discourse of couples when talking about BR decision-making. Furthermore, it shows the importance of giving women time to think about BR and discuss its issues. IMPLICATION FOR PRACTICE: Decisions about BR are difficult to make and should always be discussed between the women and health professionals, as BR is not always possible or desired by women. Partners need to be included in treatment decision-making.