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BACKGROUND: Prolonged grief is a chronic and debilitating condition that affects millions of persons worldwide. The aim of this study was to use a qualitative approach to better understand how relatives with prolonged grief disorder perceive what does or not help them and whether they were able to make recommendations. METHODS: Participants were all relatives of deceased patients admitted to 26 palliative care units involved in the FamiLife study; relatives were included if diagnosed with prolonged grief symptoms (i.e., Inventory Complicated Grief (ICG) questionnaire with a cut-off >25), and volunteered to participate. Semi-directed telephone interviews were conducted by psychologists between 6 and 12 months after the patient's death. The interviews were open-ended, without a pre-established grid, then transcribed and analyzed using a thematic approach. RESULTS: Overall, 199/608 (32.7%) relatives were diagnosed with prolonged grief symptoms, i.e., with an ICG score >25, and 39/199 (20%) agreed to be interviewed. The analysis yielded 4 themes: (1) the experience of mourning: intense sadness and guilt (reported by 35/39 participants, 90%); (2) aggravating factors (38/39, 97%): feeling unprepared for death and loneliness, presence of interpersonal barriers to adjustment, external elements hindering the mourning progress; (3) facilitating factors (39/39, 100%): having inner strength or forcing oneself to get better, availability of social and emotional support; and (4) the suggestions grieving relatives had to alleviate the grief burden (36/39, 92%). The analysis enabled to identify 5 suggestions for relieving the grief burden: improving communication, developing education about death and grief, maintaining contact, offering psychological support, and choosing the right time for the palliative care team to contact the relatives. CONCLUSIONS: This study revealed how bereaved relatives experienced the help provided by the healthcare teams, their representations, and what could be improved. These findings could be used to design intervention studies.
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OBJECTIVES: Psychological consequences of grief among relatives are insufficiently known. We reported incidence of prolonged grief among relatives of deceased patients with cancer. METHODS: Prospective cohort study of 611 relatives of 531 patients with cancer hospitalized for more than 72 hours and who died in 26 palliative care units was conducted. The primary outcome was prolonged grief in relatives 6 months after patient death, measured with the Inventory Complicated Grief (ICG > 25, range 0-76, a higher score indicates more severe symptoms) score. Secondary outcomes in relatives 6 months after patient death were anxiety and depression symptoms based on Hospital Anxiety and Depression Scale (HADS) score (range 0 [best]-42 [worst]), higher scores indicate more severe symptoms, minimally important difference 2.5. Post-traumatic stress disorder symptoms were defined by an Impact Event Scale-Revised score >22 (range 0-88, a higher score indicates more severe symptoms). RESULTS: Among 611 included relatives, 608 (99.5%) completed the trial. At 6 months, significant ICG scores were reported by 32.7% relatives (199/608, 95% CI, 29.0-36.4). The median (interquartile range ICG score) was 20.0 (11.5-29.0). The incidence of HADS symptoms was 87.5% (95% CI, 84.8-90.2%) at Days 3-5 and 68.7% (95% CI, 65.0-72.4) 6 months after patient's death, with a median (interquartile range) difference of -4 (-10 to 0) between these 2 time points. Improvement in HADS anxiety and depression scores were reported by 62.5% (362/579) relatives. SIGNIFICANCE OF RESULTS: These findings support the importance of screening relatives having risk factors of developing prolonged grief in the palliative unit and 6 months after patient's death.
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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 , Comportamento Problema , Neoplasias Encefálicas/terapia , Criança , Humanos , Saúde Mental , SobreviventesRESUMO
INTRODUCTION: An observatory of sexual harassment and psychological abuse was set up at one of France's largest schools of medicine to both quantify and reduce sexual harassment or psychological abuse of medical students. METHODS: Over a 2-year period, we described the evolution of sexual harassment and psychological abuse and explored for associated factors. Moreover, a qualitative analysis using an inductive approach was performed from students' verbatim. RESULTS: 2795 responses were collected. Sexual harassment was reported in 7% and psychological abuse in 15%, at baseline, and decreased after the observatory was set up. Women had higher odds of being a victim of sexual harassment. Older students reported less often psychological abuse and being a witness of sexual harassment. Surgery departments were associated with up to 5.7-fold increased odds of sexual harassment. Surgery and pediatrics departments were associated with a 2-fold increased odds of psychological abuse. Qualitative analysis revealed four categories: humiliation, the feeling of inferiority, sexual harassment, and manifestations of violence. CONCLUSION: During clerkships, factors associated with higher odds of sexual harassment and psychological abuse were female gender, younger age, and departments of surgery. Setting up such an observatory may contribute to reduce this burden and provide a useful tool to raise awareness.
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Assédio Sexual , Estudantes de Medicina , Criança , Abuso Emocional , Feminino , Humanos , Paris , Instituições Acadêmicas , Inquéritos e QuestionáriosRESUMO
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 do Colo/complicações , Satisfação Pessoal , Comportamento Sexual/psicologia , Disfunções Sexuais Fisiológicas/psicologia , Disfunções Sexuais Psicogênicas/psicologia , Saúde Sexual/estatística & dados numéricos , Adulto , Neoplasias do Colo/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Orgasmo/fisiologia , Parceiros Sexuais/psicologiaRESUMO
BACKGROUND: Grieving relatives can suffer from numerous consequences like anxiety, depression, post-traumatic stress disorder (PTSD) symptoms, and prolonged grief. This study aims to assess the psychological consequences of grieving relatives after patients' death in French palliative care units and their needs for support. METHODS: This is a prospective observational multicenter mixed study. Relatives of adult patients with a neoplasia expected to be hospitalized more than 72 h in a palliative care unit for end-of-life issues will be included within 48 h after patient admission. End-of-life issues are defined by the physician at patient admission. Relatives who are not able to have a phone call at 6-months are excluded. The primary outcome is the incidence of prolonged grief reaction defined by an ICG (Inventory Complicate Grief) > 25 (0 best-76 worst) at 6 months after patient' death. Prespecified secondary outcomes are the risk factors of prolonged grief, anxiety and depression symptoms between day 3 and day 5 and at 6 months after patients' death based on an Hospital Anxiety and Depression score (range 0-42) > 8 for each subscale (minimal clinically important difference: 2.5), post-traumatic stress disorder symptoms 6 months after patient' death based on the Impact of Events Scale questionnaire (0 best-88 worst) score > 22, experience of relatives during palliative care based on the Fami-Life questionnaire, specifically built for the study. Between 6 and 12 months after the patient's death, a phone interview with relatives with prolonged grief reactions will be planned by a psychologist to understand the complex system of grief. It will be analyzed with the Interpretative Phenomenological Analysis. We planned to enroll 500 patients and their close relatives assuming a 25% prolonged grief rate and a 6-month follow-up available in 60% of relatives. DISCUSSION: This study will be the first to report the psychological consequences of French relatives after a loss of a loved one in palliative care units. Evaluating relatives' experiences can provide instrumental insights for means of improving support for relatives and evaluation of bereavement programs. TRIAL REGISTRATION: NCT03748225 registered on 11/19/2018. Recruiting patients.
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Família/psicologia , Pesar , Cuidados Paliativos/psicologia , Protocolos Clínicos , França , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/tendências , Estudos Prospectivos , Inquéritos e QuestionáriosRESUMO
Importance: Keeping a diary for patients while they are in the intensive care unit (ICU) might reduce their posttraumatic stress disorder (PTSD) symptoms. Objectives: To assess the effect of an ICU diary on the psychological consequences of an ICU hospitalization. Design, Setting, and Participants: Assessor-blinded, multicenter, randomized clinical trial in 35 French ICUs from October 2015 to January 2017, with follow-up until July 2017. Among 2631 approached patients, 709 adult patients (with 1 family member each) who received mechanical ventilation within 48 hours after ICU admission for at least 2 days were eligible, 657 were randomized, and 339 were assessed 3 months after ICU discharge. Interventions: Patients in the intervention group (n = 355) had an ICU diary filled in by clinicians and family members. Patients in the control group (n = 354) had usual ICU care without an ICU diary. Main Outcomes and Measures: The primary outcome was significant PTSD symptoms, defined as an Impact Event Scale-Revised (IES-R) score greater than 22 (range, 0-88; a higher score indicates more severe symptoms), measured in patients 3 months after ICU discharge. Secondary outcomes, also measured at 3 months and compared between groups, included significant PTSD symptoms in family members; significant anxiety and depression symptoms in patients and family members, based on a Hospital Anxiety and Depression Scale score greater than 8 for each subscale (range, 0-42; higher scores indicate more severe symptoms; minimal clinically important difference, 2.5); and patient memories of the ICU stay, reported with the ICU memory tool. Results: Among 657 patients who were randomized (median [interquartile range] age, 62 [51-70] years; 126 women [37.2%]), 339 (51.6%) completed the trial. At 3 months, significant PTSD symptoms were reported by 49 of 164 patients (29.9%) in the intervention group vs 60 of 175 (34.3%) in the control group (risk difference, -4% [95% CI, -15% to 6%]; P = .39). The median (interquartile range) IES-R score was 12 (5-25) in the intervention group vs 13 (6-27) in the control group (difference, -1.47 [95% CI, -1.93 to 4.87]; P = .38). There were no significant differences in any of the 6 prespecified comparative secondary outcomes. Conclusions and Relevance: Among patients who received mechanical ventilation in the ICU, the use of an ICU diary filled in by clinicians and family members did not significantly reduce the number of patients who reported significant PTSD symptoms at 3 months. These findings do not support the use of ICU diaries for preventing PTSD symptoms. Trial Registration: ClinicalTrials.gov Identifier: NCT02519725.
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Cuidados Críticos/psicologia , Unidades de Terapia Intensiva , Respiração Artificial/psicologia , Transtornos de Estresse Pós-Traumáticos/prevenção & controle , Idoso , Família/psicologia , Feminino , Pessoal de Saúde/psicologia , Hospitalização , Humanos , Masculino , Pessoa de Meia-Idade , RegistrosRESUMO
Though the adjustment of bereaved children is increasingly investigated through quantitative studies, their intimate representations regarding the loss of their parent remain unknown. This qualitative study aims at exploring how they give meaning to this experience. Nondirective interviews with bereaved children were conducted and submitted to an interpretative phenomenological analysis. Fourteen children (8 boys, 6 girls, mean age = 8.5 years) were recruited. Seven major themes depicting their grief experience were identified. The importance of the surviving parent is critically highlighted. Findings suggest that the remaining parent could become a fundamental actor in providing grief support for the bereaved children.
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Luto , Crianças Órfãs/psicologia , Neoplasias/psicologia , Relações Pais-Filho , Apoio Social , Criança , Feminino , Humanos , MasculinoRESUMO
BACKGROUND: The cancer patient's relatives and family constitute one of the patient's main sources of support throughout the disease. In recent years, several studies have emphasized the psychological vulnerability of spouses-caregivers with a high proportion suffering from anxiety and depression symptoms. The literature underlines several factors of detrimental outcomes but critical aspects of the spousal relationship as attachment were neglected. OBJECTIVES: This study aims at (1) describing depressive symptoms and depression among spouses who care for palliative cancer patients and (2) highlighting important factors explaining these symptoms. METHODS: We surveyed 60 spouses 1-6 months before the patient's death, (38 men, mean age: 62 years). RESULTS: We found a high frequency of depression symptoms (25%) in the sample. Higher depression scores were associated to insecure-anxious attachment style, more frequent venting of emotion and disengagement through substance use. CONCLUSION: Despite limitations, this description of caregivers' emotional adjustment in the palliative phase is unique. Future support programs could use the present information by focusing on emotional venting and avoidance. It also underlines the benefits for caregivers to develop organizational skills thanks to services that will lessen tasks or care responsibilities.
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Cuidadores/psicologia , Depressão/psicologia , Neoplasias/psicologia , Cuidados Paliativos/psicologia , Cônjuges/psicologia , Adaptação Psicológica , Idoso , Cuidadores/estatística & dados numéricos , Depressão/epidemiologia , Feminino , Humanos , Relações Interpessoais , Masculino , Pessoa de Meia-Idade , Neoplasias/terapia , Fatores de Risco , Cônjuges/estatística & dados numéricos , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Although spouses bereaved after cancer are considered vulnerable people, there have been few empirical studies to explore grief specifically in this context. METHODS: Using PsycINFO, Medline, and the PRISMA statement, we systematically searched the literature by intersecting 'cancer' and 'grie*', 'cancer' and 'bereave*', and 'cancer' and 'mourn*'. RESULTS: Gathering 76 studies (2000-2013) that met the inclusion criteria for bereavement in adulthood, bereavement of an adult loved one and evidence-based research, we found the following: Spousal relationships are not systematically examined in the current dominant models of grief. Theoretically derived determinants of spousal grief after cancer and empirically derived ones converge toward the necessity to include the caregiving experience as determining grief reactions. A growing body of literature concerning prolonged grief disorders now provides integrative reflections regarding the characteristics of spousal loss, predictors, and associated therapeutic interventions in the cancer context. CONCLUSIONS: Few empirical studies (20 of 76) target spousal bereavement specifically after cancer. The process of adaptation to loss is usually decontextualized, removing any consideration of the relationship to the deceased or the experience of caregiving and dying. Our findings suggest that this topic warrants more studies that use both prospective and mixed methodologies, as well as explore typical grief needs and experiences of bereaved spouses.
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Pesar , Neoplasias , Cônjuges/psicologia , Adaptação Psicológica , Luto , Humanos , Modelos PsicológicosRESUMO
PURPOSE: Despite the substantial impact of pain in Parkinson's, little attention has been given to understanding how individuals, especially those diagnosed at a younger age, perceive and manage their pain. This research aims to fill this gap by exploring the subjective experiences of pain in this population which is at a higher risk of experiencing pain. MATERIALS AND METHODS: Interpretative Phenomenological Analysis (IPA) was used as a methodological framework. Non-directive, in-depth interviews were conducted with four French-speaking participants with Parkinson's (diagnosed before 50 years old, with various pain profiles), and analyzed using IPA. RESULTS: Four major themes emerged: (1) the history of the disease, (2) adaptation to the disease, (3) losses related to pain and (4) strategies deployed to regain control over pain. Results highlight the participants' processes of adaptation, despite the major identity disruption caused by the disease and pain. They also shed light on how the experience of pain is influenced by its relational dimension. CONCLUSIONS: Our results offer an understanding of the complexity and diversity of the experience of pain in this population. This complexity contributes to challenges in patients' ability to articulate and represent their pain accurately, advocating personalized, multidisciplinary pain management approaches within this population.
Individuals diagnosed with early-onset Parkinson's disease face unique challenges, such as increased susceptibility to pain.However, current pain management often overlooks the specific needs of this population.Our findings highlight the complex connection between pain and the disease in early-onset individuals and how participants' pain representations shape their adaptation to pain.This study outlines ways for health professionals to adopt a more targeted and individualized approach to managing pain in individuals diagnosed with early-onset Parkinson's disease.
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Studies indicate that bariatric surgery is associated with an increased risk of alcohol use disorder (AUD). It is considered some patients develop the disorder after surgery, without having antecedents of preoperative alcohol problems. This qualitative study aimed to explore the experiences of people who developed AUD postoperatively and understand how they make sense of the onset of this disorder. A semi-directed interview was carried out with eight adults who had undergone bariatric surgery and developed AUD de novo postoperatively. Data were analysed using interpretative phenomenological analysis. Four superordinate themes emerged: (1) 'losing control over drinking and self after surgery'; (2) 'feelings of guilt, shame and loss contrasted with perceptions of still being lucky'; (3) 'trying to make sense of the onset of AUD'; and (4) 'retrospective evaluation of bariatric surgery and preoperative information'. These themes indicated loss of control was a central aspect of participant's experiences of postoperative alcohol consumption. AUD was associated with negative emotions and cognitions, but several participants still considered themselves lucky. All tried to make sense of this disorder's onset; many felt they would not have developed AUD if they had not undergone surgery. The onset of AUD influenced their current perceptions and feelings about surgery and the preoperative information regarding AUD risks. Taken together, these results provide insight into the subjective experience of suffering from new-onset AUD post-surgery. However, more studies are necessary to gain a better understanding of the physical and psychological implications of postoperative AUD.
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Alcoolismo , Cirurgia Bariátrica , Adulto , Humanos , Alcoolismo/complicações , Estudos Retrospectivos , Cirurgia Bariátrica/efeitos adversos , Cirurgia Bariátrica/psicologia , Consumo de Bebidas Alcoólicas , CogniçãoRESUMO
PURPOSE: Desmoid tumors are a rare and complex disease characterized by a great diversity in its forms, localizations, and prognosis. Both the disease and the treatment can have a significant impact on quality of life in patients. Given the complexity of the disease and its rarity, the literature on patients' experience with the disease scarce. The purpose of this study is to investigate illness representations and subjective experience in participants affected with desmoid tumors. METHODS: Telephonic semi-directive interviews were used in French patients over 18 years, diagnosed with desmoid tumor. Data were analyzed through a general inductive method to identify emergent general themes in participants' discourse. RESULTS: Participants (8 women, 7 men) in this study were aged between 27 and 71. The analysis revealed eight major themes relative to representations of illness and treatment, live with the illness, the impact of illness on relationships with others, the illness and medical pathways, and the identity changes caused by the illness. The two most salient themes were illness and treatment representations and life with the illness. Those themes were chosen for this study. CONCLUSIONS: The results provide new insights on representation of and experience with desmoid tumors in patients. It brings arguments for the necessity of development wider systematic study to explore those variables in a larger sample during all the illness pathway. Indeed, this population meets particular issues appealing for the development of a specific psychosocial support.
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Fibromatose Agressiva , Pesquisa Qualitativa , Qualidade de Vida , Humanos , Feminino , Masculino , Adulto , Pessoa de Meia-Idade , Fibromatose Agressiva/terapia , Fibromatose Agressiva/psicologia , Idoso , França , Adaptação Psicológica , Entrevistas como AssuntoRESUMO
INTRODUCTION: The issue of end-of-life care is the subject of a sensitive debate in French society, particularly regarding the possibility for certain patients to have access to medical assistance in dying. The aim of this study was to assess the knowledge and opinion of healthcare providers on the care practices for patients at the end of life, as well as to highlight any specificities in their discourse. METHOD: A survey of healthcare providers' opinions, composed of closed and open questions, that were analyzed using a lexicometric approach, was distributed in a cancer center. RESULTS: The results of the study reveal a good knowledge of the different procedures. Professionals considered that advance directives should be systematically collected; a majority of them differentiated euthanasia from deep continuous sedation and perceived the latter as a means of relieving patients' suffering without inducing death. The different procedures related to the active assistance in dying were known by a majority of professionals and the survey did not identify a dominant trend concerning the will to practice euthanasia if the legal framework allowed it. Half of the participants considered their training insufficient, indicating the need to fill this gap. DISCUSSION: This survey underlines the importance of training and support for the professionals caring for patients in palliative situation and their relatives in France.
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Atitude do Pessoal de Saúde , Institutos de Câncer , Conhecimentos, Atitudes e Prática em Saúde , Cuidados Paliativos , Humanos , França , Masculino , Feminino , Adulto , Eutanásia/legislação & jurisprudência , Pessoa de Meia-Idade , Diretivas Antecipadas , Assistência Terminal , Pessoal de Saúde/psicologia , Sedação Profunda , Suicídio Assistido/legislação & jurisprudência , Inquéritos e QuestionáriosRESUMO
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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Introduction: Adolescent and young adult (AYA) survivors who have been treated for cancer during childhood and adolescence are at great risk of the physical, psychological, and social consequences of cancer and its associated treatments. However, compliance with long-term follow-up is low. One possible explanation is that follow-up care fails to meet the expectations of AYA survivors. This study explored the specific supportive care needs of AYA survivors of childhood and adolescent cancer five years post-diagnosis. Methods: Semi-structured interviews were conducted with 15 AYA aged 15 to 25 years old. Thematic analyses were conducted to establish categories of supportive care needs and classify them as being met or unmet. Results: Participants reported between 2 and 20 specific needs (M = 11), including needs concerning fertility issues and reassurance regarding relapse (each mentioned by 67% of AYA), followed by the need for locomotor care, follow-up coordination and multidisciplinary care (60% of AYA for each). Participants also reported needs regarding social relationships, administration and finance, and academic and professional domains. Most (69%) of these needs were reportedly unmet, including need of information about cancer repercussions and follow-up, support in managing fatigue and sleep problems, psychological assistance, and support from peers. Discussion: The supportive care needs are still considerable and varied in AYA survivors of childhood and adolescent cancer 5 years post-diagnosis and are largely unmet. As unmet supportive care needs highlight the gap between available care in follow-up and the real needs of AYA survivors, a better understanding of their supportive care needs and unmet needs, thanks to systematic needs assessment, would enable long-term follow-up care to be adapted, thereby improving compliance and quality of life.
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In paediatric oncology, genomics raises new ethical, legal and psychological issues, as somatic and constitutional situations intersect throughout the care pathway. The discovery of potential predisposition in this context is sometimes carried out outside the usual framework. This article focuses on the views of children, adolescents, and young adults (AYA) with cancer and their parents about their experience with genomic testing. Forty-eight semi-structured interviews were performed with children or AYAs with cancer and one of their parents, before and/or after receiving the genetic test results. The interviews were fully transcribed, coded and thematically analysed using an inductive method. This analysis revealed several themes that are key issues: perceived understanding and consenting, apprehension about the test outcomes (expectations and fears), perception and attitude towards incidental findings. The main expectation was an aetiological explanation. Children and AYAs also emphasised the altruistic meaning of genetic testing, while parents seemed to expect a therapeutic and preventive approach for their child and the rest of the family. Parents were more concerned about a family risk, while patients were more afraid of cancer relapse or transmission to their descendants. Both groups suggested possible feelings of guilt concerning family transmission and imaginary representations of what genomics may allow. Incidental findings were not understood by patients, while some parents perceived the related issues and hesitated between wanting or not to know. A multidisciplinary approach would be an interesting way to help parents and children and AYAs to better grasp the complexity of genetic and/or genomic testing.
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Alcohol-related problems increase after bariatric surgery. The objective of this review was to synthesize findings of qualitative studies on patients' perceptions of the mechanisms leading to problematic alcohol consumption after bariatric surgery. This review followed the Joanna Briggs Institute methodology for systematic review of qualitative evidence. A comprehensive search strategy was performed in MEDLINE, PsycInfo, Scopus and Google Scholar. Study selection, data extraction and critical appraisal of included studies were undertaken by two independent reviewers. Confidence in review findings was assessed using the ConQual approach. Four studies were included in this review and led to the development of four synthesized results: (1) persistence or reappearance of psychological problems after bariatric surgery; (2) using alcohol as a coping strategy, sometimes as a replacement for food; (3) changes in the physiological response to alcohol; and (4) importance of increased information about alcohol-related risks and long-term counselling. Confidence in the synthesized results ranged from moderate to low. The results indicated postoperative problematic alcohol consumption is a complex issue, involving psychological and physiological mechanisms. Several recommendations are formulated based on the results obtained. More qualitative and quantitative studies are needed to better understand this phenomenon given the few existing qualitative studies on this topic and some divergent results found between qualitative and previous quantitative research.
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Consumo de Bebidas Alcoólicas , Cirurgia Bariátrica , Humanos , Pesquisa Qualitativa , Adaptação PsicológicaRESUMO
Purpose: The appreciation of peer support can vary from one country to another due to the cultural and relational differences. This study explores what perceptions French adolescents and young adults (AYAs) in post-treatment for cancer have of the place of sick peers during their treatment and what can make barriers to meet them. Methods: A semistructured interview has been proposed 6 months after the end of cancer treatments. A thematic analysis has been conducted to highlight the major themes and subthemes identified through the participants' discourses. Results: Twelve AYAs (mean age 23 y.o., standard deviation = 2.8; min = 19; max = 26) from two French cancer centers were interviewed. Five major themes were identified, but only two were presented in this article: the place of peers and the impact of coronavirus disease 2019 (COVID-19) epidemic on AYA facilities. AYA peers with cancer major theme demonstrated that meeting sick peers has benefits (e.g., identification, understanding, support, feeling of normalcy) but also has disadvantages (e.g., negative emotional influence). The benefits of peer-to-peer meetings seem to outweigh the disadvantages. Nevertheless, AYAs can face social barriers to this kind of relationship (e.g., fatigue, need to focus on oneself, confrontation to cancer and negative events, feeling of unnatural meeting). Finally, patients' encounters and the normal functioning of AYA facilities have been hampered by the COVID-19 pandemic. Conclusion: Even if AYA services systematically suggest a meeting with other sick peers, it is important to reiterate this proposal since the needs can evolve over time. It can also be interesting to propose places of life outside the hospital to make the encounters more comfortable and natural for AYAs. Clinical Trial Registration number: NCT03964116.
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Neoplasias , Pandemias , Humanos , Adolescente , Adulto Jovem , Adulto , Neoplasias/terapia , Neoplasias/psicologia , Grupo Associado , EmoçõesRESUMO
Purpose: The third Cancer Plan (2014-2019) has helped with the recognition of adolescents and young adults (AYAs) with cancer's medical and psychosocial specificities and has enabled the creation of dedicated structures in France. Methods: The study involved 43 AYA patients (Nmen = 21; Nwomen = 22) between 15 and 27 years old (Mage = 19.9), diagnosed with all types of cancer, and were recruited in two French cancer centers. Online questionnaires were filled in 2 months after the beginning of treatment. AYAs completed measures of depressive and anxiety symptoms, perceived social support, and coping strategies. Results: Results demonstrated moderate depressive symptoms (M = 10.7, standard deviation [SD] = 7.0) and suggested a good satisfaction (M = 30, SD = 9.5) and a mild availability (M = 27, SD = 10.3) of the social support. Spearman's correlations demonstrated that coping strategies are related to depressive symptoms, for which acceptance (p < 0.01) of the disease played a key role in their psychological adjustment. Perceived social support subscales were positively correlated with the use of distraction as a coping strategy (p < 0.05). Kruskal-Wallis test demonstrated the preferential use of instrumental (p < 0.05) and emotional support (p < 0.01), denial (p < 0.01), and self-blame (p < 0.01) for women and the use of acceptance (p < 0.05) and humor (p < 0.05) for men; and there were no significant differences between patients hospitalized in the two cancer center facilities. Conclusion: Finally, a better understanding of the psychological adjustment and processes among French AYAs with cancer will help families and processionals to better adjust AYA-specific needs at the beginning of cancer treatment. ClinicalTrials.gov.: NCT03964116.