Social support resources in adolescents and young adults with advanced cancer: a qualitative analysis.

PURPOSE: Adolescents and Young Adults (AYAs) with cancer are an at-risk group with unique palliative and supportive care needs. Social support in AYAs with cancer is associated with better coping, quality of life, and psychosocial well-being. Here, we extend existing research to examine the sources and types of support received by AYAs with advanced cancer. METHODS: AYAs participated in a semi-structured, 1:1 interview on communication and psychosocial support needs. The present analysis focused on social support experiences for AYAs with advanced cancer. Directed content analysis was used to develop the codebook. Established social support constructs provided a coding framework. We presented our qualitative findings as a code frequency report with quantified frequency counts of all "source of support" and "type of support" codes. We assigned a global "sufficiency of support code" to each AYA. RESULTS: We interviewed 32 AYAs with advanced cancer (Mage = 18, SDage = 3.2, 41% female). Most AYAs identified family (namely, caregivers) as their primary source of support and stated that family universally provided all types of support: emotional, informational, instrumental, and social companionship. They received informational and emotional support from clinicians, and received emotional support and social companionship from healthy peers, cancer peers, and their existing community. One-third of participants were coded as having "mixed support" and described a lack of support in some domains. CONCLUSION: AYAs with advanced cancer described caregivers as their universal source of support, and that other support sources provided support for specific needs. Future research should continue to evaluate social support needs and family-based palliative and supportive care interventions to bolster social support resources in this high-risk group.

Understanding Young Adult Cancer Survivors' Engagement with Cancer Storylines in Entertainment Media Narratives.

Purpose: Some young adult cancer survivors (YACS; ages 18-39) struggle to incorporate their cancer experiences into their identities. Using stories, or narratives, is a new approach that could help YACS to integrate cancer and their identity. These stories offer opportunities to experience perspectives outside of oneself, which can build validation and self-compassion. However, little is known about whether stories about cancer (i.e., the threat itself) are beneficial. Method: YACS completed an online survey about their engagement with cancer storylines in entertainment media narratives (e.g., books, movies, and television shows). They also described their reactions to encountering these storylines in entertainment media. Results: Participants (n = 108) were primarily White. Participants who sought cancer storylines reported a more positive impact of cancer on their sense of purpose and identity. Among YACS who had completed treatment, cancer storylines were sought after treatment more than during treatment. In addition, compared with their peers, participants who identified as Black reported greater cancer storyline seeking both during and after treatment. Nearly half of participants (n = 45, 47.4%) described reactions to cancer-related storylines as positive or mixed, primarily owing to feelings of inspiration or validation. Conclusion: Consuming cancer storylines can offer some benefits for YACS, especially among those finished with treatment and those who identify as Black. However, not all YACS responded positively, so future research should investigate which YACS could benefit most from cancer-related storylines. Nonetheless, entertainment media narratives represent a novel approach to supporting YACS' integration of cancer into their identity.

Experiences of cohabiting partners of women diagnosed with cancer during pregnancy: a qualitative study.

PURPOSE: When a pregnant woman is diagnosed with cancer, she faces complex and unique challenges while navigating both obstetric and oncological care. Despite often being the primary support for women diagnosed with cancer during pregnancy (CDP), little is known about the experiences of their partners. We undertook an in-depth exploration of the experiences of partners of women diagnosed with CDP in Australia. METHODS: Semi-structured interviews were conducted with partners of women diagnosed with CDP treated in Australia. Interviews explored partners' inclusion in decision making and communication with health professionals and their own coping experiences. Data were analysed thematically. RESULTS: Data from interviews with 12 male partners (N = 12) of women diagnosed with CDP were analysed. Two unique themes relevant to partners were identified: 'Partners require support to adjust to changing roles and additional burdens' and 'Treating the couple as a team facilitates agency and coping, but partners' needs are placed second by all'. CONCLUSION: Partners of women diagnosed with CDP commonly experience unique stressors and a substantial shift in previously established roles across multiple domains including medical advocacy, household coordination and parenting. Partners' coping is interlinked with how the woman diagnosed with CDP is coping. Inclusion of partners in treatment decisions and communications, and considering partners' wellbeing alongside that of the woman with CDP, is likely to be supportive for partners. In turn, this is likely to enhance the quality of support that women diagnosed with CDP receive from their partners.

Perceptions of tech-based mental health screening.

Background: An estimated one-third of patients experience post-traumatic stress disorder (PTSD) or depression in the year following a traumatic injury. The American College of Surgeons requires postinjury PTSD and depression screening in trauma centers, although implementation has been limited. Tech-based solutions have been proposed to improve uptake of postinjury mental health screening. The goals of this pilot study were to assess the usability and acceptability of Blueprint, a tech-based mental health screening platform, and explore attitudes toward tech-based screening and intervention. Methods: This pilot study included trauma patients (n=10) admitted to the trauma service. Participants completed the PTSD Checklist-5 and Patient Health Questionnaire-9 using Blueprint to test usability and acceptability of the platform. Participants completed the System Usability Scale (SUS) and a semi-structured interview to assess several domains including attitudes toward tech-based screening, potential barriers to implementation, and its usefulness in a postinjury context. Summative Template Analysis, a data abstraction procedure, was used to analyze qualitative data. Results: Blueprint received an average SUS score of 93.25/100 suggesting participants found the interface to be an 'excellent' means to assess postinjury mental health concerns. Participants were supportive of universal screening and identified several benefits to engaging in tech-based routine monitoring of postinjury PTSD and depressive symptoms including convenience, personalization, and trauma-informed care. Regarding intervention, patients valued web-based psychoeducation on topics related to their overall care and local resources. Conclusions: Tech-based mental health screening was highly usable and valuable to trauma patients at risk for postinjury PTSD and depression. Participants valued web-based psychoeducation and resources, but overall preferred Blueprint be used to facilitate access to in-person mental health services. Further evaluation of Blueprint as a means of assessment, intervention, and referral is needed.

Psychosocial interventions aimed at family members caring for patients with cancer in the palliative period: A systematic review.

AIM: The purpose of this systematic review is to examine evidence-based psychosocial intervention research aimed at family members caring for patients with cancer in the palliative period. METHOD: In this systematic review, randomized controlled psychosocial intervention studies for the family member caring for patients with cancer published between January 1, 2016 and July 30, 2021 were reviewed. PubMed (including MEDLINE), Cochrane, APA PsycNet, ProQuest, Science Direct, TR Index, and Wiley Online Library databases were scanned. Eight publications were identified following a database review for English language articles published from 2016 to 2021. Sample, methods, content, and outcomes of included interventions are summarized. RESULTS: Only eight of the 4652 articles examined met the inclusion criteria. Psychosocial interventions such as mindfulness exercises, stress management, acceptance and commitment therapy, cognitive behavioral intervention, and meaning-centered psychotherapy for cancer caregivers were applied for relatives caring for patients with cancer in the palliative period. CONCLUSION: Psychosocial interventions applied to family members caring for patients with cancer during the palliative period lead to improvements in depressive symptoms, stress levels, the caregiver burden, quality of life, self-efficacy, coping skills, and awareness levels.

Arranjos assistenciais em uma rede atenção psicossocial no sul do Brasil / Arreglos asistenciales en una red de apoyo psicosocial en sur de Brasil / Care arrangements on a psychosocial care network in southern Brazil

RESUMO. A implementação da reforma psiquiátrica é tema de recorrentes discussões no campo da saúde mental. Essa implementação não é padrão para todas as localidades brasileiras, uma vez que depende dos recursos materiais, humanos e aspectos culturais de cada região. A esta singularidade retoma-se a noção de arranjo assistencial. Este trabalho se propôs a conhecer a implementação numa regional de saúde da região Sul. Foi realizado um mapeamento descritivo, seguindo método empírico-fenomenológico. Descrevem-se serviços que acolhem todos os públicos, mas que encontram dificuldades no trabalho com a população usuária de álcool e outras drogas. Foram elencados sete dispositivos assistenciais: acolhimento, grupos terapêuticos, oficinas, atendimentos individuais, uso da medicação, encaminhamentos e reuniões de equipe. Expõe-se a ideia de que a estrutura de um serviço de saúde mental não pode ser estanque. Os arranjos assistenciais estão relacionados às vivências e soluções criativas e humanas como também práticas irrefletidas e normatizadoras na atenção do sofrimento mental.

RESUMEN. La implementación de la reforma psiquiátrica no se encuentra estandarizada para todas las regiones brasileras, una vez que eso depende de recursos materiales, humanos y de aspectos culturales. Por cuenta de esta singularidad, se retoma la noción de arreglo asistencial. En este trabajo se propone conocer la implementación en una regional de salud de sur de Brasil. Se realizó un mapeo descriptivo, siguiendo el método empírico-fenomenológico. Se describen servicios que acogen a todos los públicos, pero que encuentran dificultades en el trabajo con usuarios de alcohol y drogas. Fueran enumerados siete dispositivos asistenciales: Acogimiento, grupos terapéuticos, talleres, atendimientos individuales, uso de medicación, encaminamientos y reuniones de equipo. Se expone la idea de que la estructura de un servicio de Salud Mental no puede ser hermética. Los arreglos asistenciales están relacionados con las vivencias y soluciones creativas y humanas como también prácticas irreflexivas y normalizadoras en la atención del sufrimiento mental.

ABSTRACT. The psychiatric reform is not standard in all Brazilian places, as it depends on different factors such as material, human and cultural aspects of each region. As for its singularity, it is seen as a care arrangement. This article aims to study the psychosocial care network on a regional health department in south Brazil. A descriptive mapping has been performed, following the empirical-phenomenological method. The services described welcome the entire community, people from all walks of life, but when it comes Drug and Alcohol addicted, the approach becomes more challenging. There have been seven care services listed: Hosting, Therapeutic Groups, Workshops, Individual Treatment, Medication usage, Referrals and Support Group Meetings. The approach for care arrangement is related to the creative experiences and human solutions as well as thoughtless and normative practices in the attention of mental suffering.

Processos de desproteção e de proteção de crianças, adolescentes e suas famílias - uma análise de múltiplas evidências dos reflexos da pandemia / Processes of deprotection and protection of children, adolescents and their families - an analysis of multiple evidence of the consequences of the pandemic / Procesos de desprotección y protección de niños, adolescentes y sus familias - un análisis de múltiples evidencias de las consecuencias de la pandemia

O objetivo deste artigo é apresentar uma visão geral de múltiplas evidências, levantadas de forma sistemática na literatura, sobre processos de desproteção de crianças, adolescentes e suas famílias, bem como estratégias de proteção e atuação durante a crise sanitária causada pela Covid-19 e no contexto pós-pandêmico. Para tanto, foram selecionados 13 artigos de revisão, entre 2020 e 2023, os quais trazem os principais aspectos que incidem nas desproteções de crianças e adolescentes, afetando a saúde mental, a convivência familiar e comunitária, bem como estratégias de intervenção para o enfrentamento dessas situações. Assim, este estudo traz uma discussão que pode ser subsídio para que profissionais do campo da proteção infantojuvenil possam planejar ações diante dos reflexos da crise pandêmica, política, social e econômica nos últimos tempos. Os efeitos das desproteções ligadas à insegurança de renda, à falta de acesso aos serviços, à redução de autonomia e a problemas de saúde mental ampliaram desproteções relacionais e contextos de violência. Por outro lado, o acesso a serviços e políticas públicas, com apoio às famílias, é o que a literatura destaca para ampliar a proteção infantojuvenil. Portanto, é fundamental identificar demandas para a busca de atuações com foco na melhoria das ofertas de serviços e na promoção de espaços de convivências protetivas.

The objective of this study is to present an overview of multiple evidence, systematically collected in the literature, on processes of deprotection for children, adolescents and their families, as well as protection and action strategies during the health crisis caused by Covid-19 and in the post-pandemic context. To this end, 13 review articles were selected, between 2020 and 2023, which bring the main aspects that affect the deprotection of children/adolescents, affecting mental health, family and community coexistence, as well as intervention strategies to combat these issues. Thus, this article brings a discussion that can provide support for professionals in the field of child and youth protection to plan actions in light of the consequences of this pandemic, political, social and economic crisis in recent times. The effects of lack of protection linked to income insecurity, lack of access to services, reduced autonomy and mental health problems have increased relational lack of protection and contexts of violence. On the other hand, access to services and public policies, with support for families, is what the literature highlights to expand child and youth protection. Therefore, it is essential to identify demands to seek actions focused on improving service offerings and promoting protective spaces.

El objetivo de este estudio es presentar un panorama de múltiples evidencias, recogidas sistemáticamente en la literatura, sobre procesos de desprotección de niños, niñas, adolescentes y sus familias, así como estrategias de protección y acción durante la crisis sanitaria provocada por el Covid-19 y en el contexto pospandemia. Para ello se seleccionaron 13 artículos de revisión, entre 2020 y 2023, que traen los principales aspectos que inciden en la desprotección de niños/adolescentes, afectando la salud mental, la convivencia familiar y comunitaria, así como estrategias de intervención para combatir estas situaciones. Así, este artículo proporciona una discusión que puede brindar apoyo a los profesionales del campo de la protección de niños y jóvenes para planificar acciones ante las consecuencias de esta pandemia, crisis política, social y económica de los últimos tiempos. Los efectos de la desprotección vinculados a la inseguridad de ingresos, la falta de acceso a servicios, la reducción de la autonomía y los problemas de salud mental han aumentado la desprotección relacional y los contextos de violencia. Por otro lado, el acceso a servicios y políticas públicas, con apoyo a las familias, es lo que destaca la literatura para ampliar la protección de niños y jóvenes. Por lo tanto, es fundamental identificar demandas para buscar acciones enfocadas a mejorar la oferta de servicios y promover espacios protectores de convivencia.

Desafios da Psicologia Indígena no atendimento a estudantes universitários / Challenges of Indigenous Psychology in providing assistance to university students

Objetivo Este artigo tem como objetivo discutir a abordagem da psicologia indígena no cuidado de estudantes indígenas em contexto universitário. Método Utilizando o método qualitativo, este artigo apresenta um estudo de caso detalhando a trajetória de formação da Rede de Escuta e Desaprendizagens Étnico-Subjetivas, para analisar a aplicação dos pressupostos da psicologia indígena no suporte a estudantes indígenas e seus familiares na Universidade Estadual de Campinas. Resultados Evidenciou-se a necessidade de reconhecer diferentes epistemologias para uma conexão terapêutica respeitosa. Foram observados desafios na aplicação de práticas alinhadas com a psicologia indígena, destacando a coautoria nas sessões, a valorização das perspectivas dos pacientes e as desaprendizagens contínuas. O estudo dos elementos culturais das etnias envolvidas mostrou-se crucial para evitar a patologização das cosmovisões e subjetividades indígenas. Conclusão A psicologia indígena apresenta-se como um vetor de mudança nas disputas de narrativas culturais, destacando a lacuna na abordagem clínica e a necessidade urgente de estudos para desenvolver intervenções personalizadas para o atendimento das diferentes etnias indígenas.

Objective This article aims to discuss the approach of indigenous psychology in the care of indigenous students in a university framework. Method Using a qualitative method, this article presents a case study detailing the formation trajectory of the Rede de Escuta e Desaprendizagens Étnico-Subjetivas (Network of Ethno-Subjective Listen-ing and Unlearning) to review the application of the principles of indigenous psychology in sup-porting indigenous students and their families at Universidade Estadual de Campinas (Unicamp, State University of Campinas), Brazil. Results The study highlighted the need to recognize different epistemologies for respectful therapeutic connections. Challenges were faced in the application of practices aligned with indigenous psychology, emphasizing co-authorship in sessions, valuing patients' perspectives, and continuous unlearning. The study of the cultural elements of the ethnicities involved proved crucial to avoid the pathologization of indigenous worldviews and subjectivities. Conclusion Indigenous psychology presents itself as a tool for the changes in the cultural struggles, highlighting the gap in clinical approaches and the urgent need for further studies to develop personalized interven-tions for the care of the diverse indigenous ethnicities.

Uma abordagem qualitativa acerca da vivência de pacientes a partir do diagnóstico de câncer / A qualitative approach to the experience of patients from the diagnosis of cancer

Objetivo: compreender as vivências de pacientes oncológicos a partir do diagnóstico e as estratégias adotadas. Métodos: trata-se de uma pesquisa de natureza qualitativa e transversal, de caráter exploratória e descritiva.A amostra foi constituída por 10 mulheres com câncer assistidas por uma associação de apoio a pacientes com câncer em João Pessoa/PB, selecionadas por amostragem não probabilística por conveniência. Para a coleta dos dados utilizou-se um questionário sociodemográfico e de saúde, e a entrevista semiestruturada, pautada no método História de Vida. Os dados sociodemográficos foram analisados através de estatística descritiva (frequência e porcentagem), e os dados provenientes da entrevista foram analisados pela técnica de Análise de Conteúdo temática, conforme proposta por Bardin. A média de idade das mulheres foi de 61,8 anos. Surgiram 4 categorias e 12 subcategorias. Resultados: o diagnóstico de câncer provocou impactos negativos na vida dos pacientes e na vida dos seus familiares. Ter uma rede de apoio é uma importante estratégia de enfrentamento utilizada pelas pacientes, devido ao sofrimento causado pelo câncer. Conclusão:Evidenciou-se a importância de estratégias de enfrentamento do sofrimento do paciente oncológico, sobretudo com relação à rede de apoio, sendo esta a categoria de maior destaque ente todas as encontradas.

Objective: to understand the experiences of cancer patients based on the diagnosis and the strategies adopted. Methods: this is a qualitative and transversal research, exploratory and descriptive. The sample consisted of 10 women with cancer assisted by a support association for cancer patients in João Pessoa/PB, selected by non-probabilistic convenience sampling. To collect data, a sociodemographic and health questionnaire was used, as well as a semi-structured interview based on the life history method. Sociodemographic data were analyzed using descriptive statistics (frequency and percentage), and data from the interview were analyzed using the Thematic Content Analysis technique proposed by Bardin. The average age of the women was 61.8 years. Four categories and 12 subcategories emerged. Results: the diagnosis of cancer caused negative impacts on the lives of patients and their families. Having a support network is an essential coping strategy used by patients due to the suffering caused by cancer. Conclusion: The importance of strategies for coping with the suffering of cancer patients was highlighted, especially concerning the support network, this being the most prominent category among all those found.

Caring for dependent children impacts practical and emotional problems and need for support, but not perceived distress among cancer patients.

OBJECTIVE: More than one in 10 cancer patients care for dependent children. It is unclear whether this status makes a difference in terms of the distress and associated problems they experience, or whether it is linked to differences in the need for or utilization of psychosocial support. METHODS: Secondary analysis of a cross-sectional German study in National Comprehensive Cancer Centers using self-report standardized questionnaires administered to inpatients. Patients living with dependent children (n = 161) were matched by age and sex with a subsample of 161 cancer patients not living with dependent children. The resulting sample was tested for between-group differences in Distress Thermometer (DT) scores and the corresponding DT Problem List. Additionally, between-group differences in measures of the need for and utilization of psychosocial support were examined. RESULTS: More than 50% of all patients suffered from clinically relevant distress. Patients living with dependent children reported significantly more practical (p < 0.001, η2 p = 0.04), family (p < 0.001, η2 p = 0.03), and emotional problems (p < 0.001, η2 p = 0.01). Although reporting a greater need for psychological support, parents with cancer were not found to more frequently utilize any type of psychosocial support. CONCLUSIONS: The specific problems and needs of parents with cancer who care for dependent children are currently not sufficiently addressed in the clinical care pathways. All families should be helped to establish open and honest communication as well as understand the available support systems and what they can provide. Tailored interventions should be implemented for highly distressed families.

Is an Exercise Program for Pediatric Cancer Patients in Palliative Care Feasible and Supportive?-A Case Series.

(1) Background: Growing evidence indicates benefits through exercise programs in pediatric oncology throughout the whole cancer trajectory. This should include palliative care, too. This project analyzes the feasibility of a supervised exercise program offered during hospital and home-based care for children with advanced cancer diagnoses. (2) Methods: Four children (7-13 years old) with advanced cancer diagnoses participated in this project. It consisted of supervised exercise sessions offered once a week (30-90 min), mainly home-based, but also on an in- and outpatient basis. Regular data assessments included psychological and physical capacity-related endpoints and body composition. Details and contents of exercise sessions and adverse events were recorded. (3) Results: Exercise was feasible with 73 ± 9% adherence to the minimum number of planned sessions. The exercise offer was accepted until shortly before death. Effects on fatigue, quality of life and muscular endurance were noted. Participants showed major deviations from age-specific reference values. No exercise-related adverse events occurred. (4) Conclusions: The exercise program was safe, feasible, and might have served as a supportive tool to reduce overall burden. Evaluation of exercise as usual palliative care should be assessed by further studies.

Associations among navigational support and health care utilization and costs in patients with advanced cancer: An analysis based on administrative health insurance data.

BACKGROUND: Fragmented and complex healthcare systems make it difficult to provide continuity of care for patients with advanced cancer near the end of life. Nurse-based cross-sectoral navigation support has the potential to increase patients' quality of life. The objective of this paper was to evaluate associations between navigation support and health care utilization, and the associated costs of care. METHODS: The evaluation is based on claims data from 37 statutory health insurance funds. Non-randomized recruitment of the intervention group (IG) took place between 2018 and 2019 in four German hospitals. The comparison group (CG) was defined ex post. It comprises nonparticipating clients of the involved health insurance funds matched on age, gender, and diagnosis in a 1:4 ratio to the IG. Healthcare resource utilization was compared using incident rate ratios (IRRs) based on negative binomial regression models. Linear mixed models were performed to compare differences in lengths of hospital stays and costs between groups. RESULTS: A total of 717 patients were included (IG: 149, CG: 568). IG patients showed shorter average lengths of hospital stays (IG: 11 days [95% CI: 10, 13] vs. CG: 15 days [95% CI: 14, 16], p < 0.001). In the IG, 21% fewer medications were prescribed and there were on average 15% fewer outpatient doctor contacts per month. Average billed costs in the IG were 23% lower than in the CG (IG: 6754 EUR [95% CI: 5702, 8000] vs. CG: 8816 EUR [95% CI: 8153, 9533], p < 0.001). CONCLUSIONS: The intervention was associated with decreased costs mainly as a result of a non-intended navigation effect. The social care nurses had navigated patients within the hospital early, needs-oriented and effectively but interpreted their function less cross-sectorally. Linkage of hospital-based navigators with the outpatient care sector needs further exploration.

Developing a consensus statement for psychosocial support in active surveillance for prostate cancer.

Purpose: Our objective was to prioritise the psychosocial support needs of men on active surveillance for prostate cancer and to develop a consensus statement to provide guidance on best practice psychosocial support for men choosing active surveillance and their families. Subjects and methods: We undertook a patient and public involvement Delphi process over two rounds, informed by qualitative data and a comprehensive literature review, to prioritise the information and support needs of men on active surveillance for prostate cancer. Two panels were surveyed, a patient/carer panel (n = 55) and a health care provider panel (n = 114). Based on the findings of the Delphi surveys, an expert active surveillance discussion group developed a consensus statement to guide best practice. Results: Patients and health care professionals differed slightly in their ideas concerning priorities for active surveillance psychosocial support. Broadly, agreed priority areas included -patients being involved in decision-making, continuity of care, more streamlined access to health care teams, improved understanding of the risk of prostate cancer progression and information and support provided through both health care professionals and peers. Based on the identified priorities, the expert discussion group agreed on 22 consensus statements for best practice in psychosocial care for active surveillance in respect of (1) principles of an active surveillance programme; (2) structure of consultations; (3) content of information and support; and (4) delivery of information. Conclusion: This consensus statement provides a framework for patient-focused psychosocial support, which, if adopted, should increase uptake and adherence to active surveillance among men with prostate cancer.

Comparison of Psychological Quality of Life Between Long-Term Survivors of Childhood Cancer and Their Families.

Purpose: Although treatment outcomes for childhood cancer have improved in recent years, some patients continue to experience physical symptoms and psychological stress several years after the end of treatment. This study aimed to examine the correlation between the quality-of-life (QOL) scores of childhood cancer survivors (CCSs) aged 18-39 and (1) their families and (2) the time since the end of treatment. Methods: Measuring the QOL of CCSs attending the long-term follow-up (LTFU) and those of their families. The Short-Form Health Survey (SF-36) was used for CCSs and the Caregiver Quality of Life Index-Cancer (CQOLC) for their families. Spearman's rank correlation analyses were used to examine the relationship between the CCSs' and their families' QOL and the time since the end of treatment. Results: Twenty-nine CCSs (mean age, 24.2 years; mean the time since the end of treatment, 13.9 years), each paired with one family member, were included. Time since the end of treatment was positively correlated with the CCSs' QOL on the physical component score (ρ = 0.42, p = 0.03) and negatively correlated with mental health (MH) (ρ = -0.50, p = 0.01), a subscale of the mental component score (MCS). Furthermore, the CCSs' QOL on the MCS was positively correlated with their families' QOL scores (ρ = 0.58, p < 0.01). Conclusion: Psychological stress may persist in CCSs long after treatment, even when physical symptoms improve. Therefore, it is necessary to establish a comprehensive support system for the LTFU of CCSs, including MH care and QOL monitoring for patients and their families.

Early diagnosis of autism and other developmental disorders, Brazil, 2013-2019 / Diagnóstico precoce do autismo e outros transtornos do desenvolvimento, Brasil, 2013-2019

ABSTRACT OBJECTIVE To investigate the factors associated with the early diagnosis of autism and other types of pervasive developmental disorder (PDD) in children treated at the Psychosocial Care Center for Children and Adolescents of the Unified Health System, from 2013 to 2019,in Brazil. METHODS An exploratory cross-sectional study, based on data from the Record of Outpatient Health Actions (RAAS) of the first appointment of children aged 1 to 12 years. The gross (RRg) and adjusted (RRa) relative risks and respective 95% confidence intervals (95%CI) were estimated using the Poisson regression model with robust variance estimation. RESULTS Of the 22,483 children included in the study, the majority were male (81.9%), lived in the same municipality where they were diagnosed (96.8%) and in the Southeast region (57.7%). Early diagnosis was higher for childhood autism (RRg = 1.48; 95%CI 1.27-1.71) , PDD without subtype designation (RRg = 1.55; 95%CI 1.34-1.80), other PDD (RRg = 1.48; 95%CI 1.21-1.81) and PDD not otherwise specified (RRg = 1.44; 95%CI 1.22-1.69) than for atypical autism. Children residing in the same municipality where the diagnosis was made had a higher rate of early diagnosis (RRg = 1.31; 95%CI 1.10-1.55) than the others; as well as those referred by primary care (RRg = 1.51; 95%CI 1.37-1.68) and by spontaneous demand (RRg = 1.45; 95%CI 1.31-1.61) than those from other types of referral. Early diagnosis was higher from 2014 and lower in the North region than in the other regions. In the multiple analysis, the magnitude of RRa was similar to that of RRg. CONCLUSIONS Early identification of autism and other PDD has improved in Brazil, but it still represents about 30% of the diagnoses made. The variables included in the model were significant, but still explain little of the early diagnosis of children with autism and other PDD.

RESUMO OBJETIVO Investigar os fatores associados ao diagnóstico precoce do autismo e de outros tipos de transtorno global do desenvolvimento (TGD) de crianças atendidas no Centro de Atenção Psicossocial Infantojuvenil do Sistema Único de Saúde, no período de 2013 a 2019, no Brasil. MÉTODOS Estudo transversal exploratório, com base nos dados do Registro das Ações Ambulatoriais de Saúde (RAAS) do primeiro atendimento de crianças de 1 a 12 anos. Foram estimados o risco relativo bruto (RRb) e ajustado (RRa), e respectivo intervalo de confiança de 95% (IC95%), utilizando o modelo de regressão de Poisson com estimativa de variância robusta. RESULTADOS Das 22.483 crianças incluídas no estudo, a maioria era do sexo masculino (81,9%), residia no mesmo município em que foi diagnosticada (96,8%) e na região Sudeste (57,7%). O diagnóstico precoce foi maior para autismo infantil (RRb= 1,48; IC95% 1,27-1,71), TGD sem designação de subtipo (RRb= 1,55; IC95% 1,34-1,80), outros TGD (RRb= 1,48; IC95% 1,21-1,81) e TGD não especificado (RRb= 1,44; IC95% 1,22-1,69) do que para autismo atípico. As crianças que residiam no mesmo município onde foi realizado o diagnóstico tiveram maior índice de diagnóstico precoce (RRb= 1,31; IC95% 1,10-1,55) do que as demais; bem como aquelas encaminhadas pela atenção básica (RRb= 1,51; IC95% 1,37-1,68) e por demanda espontânea (RRb= 1,45; IC95% 1,31-1,61) do que as oriundas de outros tipos de encaminhamento. O diagnóstico precoce foi maior a partir de 2014 e menor na região Norte quando comparada às demais. Na análise múltipla, a magnitude do RRafoi similar ao do RRb. CONCLUSÕES A identificação precoce de autismo e outros TGD tem melhorado no país, mas ainda representa cerca de 30% dos diagnósticos realizados. As variáveis incluídas no modelo foram significativas, mas ainda explicam pouco do diagnóstico precoce de crianças com autismo e outros TGD.

Substance use disorders and social functioning from an occupational perspective: a pre and post-study / Transtornos pelo uso de substâncias e funcionamento social sob uma perspectiva ocupacional: um pré e pós estudo

Abstract Introduction Improvements in the social functioning (SF) of people experiencing substance use disorders (SUD) can occur even without use discontinuation. Occupational Therapy (OT) performs multifaceted work on it. Objective This study analyzes the SF of people experiencing SUD before and after treatment and the contributions of OT. Method A pre and post-study before and after starting treatment for SUD in a Psychosocial Care Centre - Alcohol and other Drugs (CAPS-AD) in Brasilia, Brazil - was conducted with 35 clients based on an SF questionnaire. A measure of the participant's SF improvement was defined as the difference between the SF before treatment (SFpre) with the SF after treatment (SFafter). The association between SF and sociodemographic variables/drug/previous treatment was verified by linear regression; all analyses considered a significance level <5%. Results Most of the 35 participants were male (83%), 30-49 years old (77%), attended elementary school (57%), unemployed (57%), single (46%), Black (40%), had been treated previously (60%) and had present alcohol use disorder (46%). Overall, people undergoing treatment significantly improved their SF. Multivariate analysis showed that Whites improved their SF more (mean of 18.8± 10.4) than Pardos/Blacks (10.8± 8.7; 14.1± 6.4), and the improvement in SF was lower for participants who were taking treatment for the first time (10.3± 5.7) compared with those who had previous treatment (17.2± 9.4). Conclusion Treatment in CAPS-AD improved the SF of people experiencing SUD, and the OT professional is a key agent in improving SF due to its performance and approach to clients in vulnerable contexts.

Resumo Introdução Melhorias no funcionamento social (FS) de pessoas com transtornos pelo uso de substâncias (TUS) podem ocorrer mesmo sem descontinuar o uso. A terapia ocupacional realiza um trabalho multifacetado sobre isso. Objetivo Este estudo analisa o funcionamento social das pessoas com transtornos pelo uso de substâncias antes e depois do tratamento e contribuições da terapia ocupacional. Método Um pré e pós-estudo - antes e depois do tratamento para TUS em um Centro de Atenção Psicossocial álcool/drogas (CAPS-AD) em Brasília, Brasil - foi realizado com 35 clientes com um questionário sobre FS. A melhora do FS foi definida como a diferença entre o valor do FS antes (FSpre) e depois do tratamento (FSafter). A associação entre o FS e as variáveis sociodemográficas/drogas/tratamento anterior foi verificada por regressão linear; foi considerado um nível de significância <5%. Resultados A maioria era homens (83%), 30-49 anos de idade (77%), com ensino fundamental (57%), desempregados (57%), solteiros (46%), negros (40%), com tratamento anterior (60%), e apresentavam TU de álcool (46%). Em geral, as pessoas submetidas a tratamento melhoraram significativamente seu FS. A análise multivariada mostrou que os brancos melhoraram mais seu FS (média de 18.8± 10.4) que os Pardos/Negros (10.8± 8.7; 14.1± 6.4), e foi menor entre os que estavam fazendo tratamento pela primeira vez (10.3± 5.7) em comparação com os que o fizeram anteriormente (17.2± 9.4). Conclusão O tratamento no CAPS-AD melhorou o FS das pessoas com TUS, o profissional terapeuta ocupacional é um agente chave para melhorar o FS devido a sua atuação e abordagem em contextos vulneráveis.

Perfil epidemiológico dos usuários dos centros de atenção psicossocial no sul do Brasil / Epidemiological profile of users of psychosocial care centers in southern Brazil / Perfil epidemiológico de los usuarios de centros de atención psicosocial en el sur de Brasil

Objetivo: Traçar o perfil epidemiológico dos 5.082 usuários dos Centros de Atenção Psicossociais em um município no Sul do Brasil no período de 2014 a 2020. Metodologia: O estudo foi descritivo, com abordagem quantitativa utilizando dados secundários. A população foi composta por usuários dos três Centros de Atenção Psicossociais. Resultados: Perfil dos usuários do Centro de Atenção Psicossocial II: sexo feminino, faixa etária de 20-59 anos, procedência de outros estados, baixa escolaridade, ocupação em serviços e comércio, diagnóstico predominante foi a depressão, encaminhamento pela atenção básica. Centro de Atenção Psicossocial Álcool e Drogas: sexo masculino, faixa etária de 20-59 anos, procedência de outros estados, baixa escolaridade, ocupação em serviços e comércio, diagnóstico predominante uso de drogas, encaminhamento demanda espontânea. Centro de Atenção Psicossocial Infantil: sexo masculino, faixa etária de 11-18 anos, procedência do próprio município, diagnóstico predominante ansiedade, encaminhamento atenção básica. Nos três Centros a frequência de tratamento ocorreu semanalmente, com o uso de polimedicamentos e o motivo de abandono foi a alta do serviço. Conclusão: Esses resultados servem de linha de base para monitorar a prevalência de transtornos mentais e auxiliar no planejamento de recursos e serviços de saúde mental neste município.

Objective: To trace the epidemiological profile of 5.082 users of Psychosocial Care Centers in a city in southern Brazil from 2014 to 2020. Methodology: The study was descriptive, with a quantitative approach using secondary data. The population consisted of users of the three Psychosocial Care Centers. Results: Profile of users of the Psychosocial Care Center II: female gender, age range 20-59 years, from other states, low education, occupation in services and commerce, predominant diagnosis was depression, referral by primary care. Psychosocial Care Center for Alcohol and Drugs: male, age range 20-59 years, from other states, low education, occupation in services and commerce, predominant diagnosis of drug use, referral spontaneous demand. Child Psychosocial Care Center: male, age range 11-18 years, origin in the municipality itself, predominant diagnosis of anxiety, referral to primary care. In the three Centers, the frequency of treatment was weekly, with the use of polypharmacy and the reason for abandonment was discharge from the service. Conclusion: These results serve as a baseline to monitor the prevalence of mental disorders and assist in the planning of mental health resources and services in this city.

Objetivo: Trazar el perfil epidemiológico de 5.082 usuarios de Centros de Atención Psicosocial en una ciudad del sur de Brasil de 2014 a 2020. Metodología: El estudio fue descriptivo, con enfoque cuantitativo utilizando datos secundarios. La población estuvo constituida por los usuarios de los tres Centros de Atención Psicosocial. Resultados: Perfil de los usuarios del Centro de Atención Psicosocial II: sexo femenino, rango de edad 20-59 años, de otros estados, baja escolaridad, ocupación en servicios y comercio, diagnóstico predominante fue depresión, derivación por atención primaria. Centro de Atención Psicosocial para Alcohol y Drogas: sexo masculino, rango de edad 20-59 años, oriundo de otros estados, baja escolaridad, ocupación en servicios y comer- cio, diagnóstico predominante consumo de drogas, derivación demanda espontánea. Cen- tro de Atención Psicosocial Infantil: varón, rango de edad 11-18 años, procedencia del propio municipio, diagnóstico predominante de ansiedad, derivación a atención primaria. En los tres Centros, la frecuencia de tratamiento fue semanal, con uso de polifarmacia y el motivo de abandono fue el alta del servicio. Conclusiones: Estos resultados sirven como línea de base para monitorizar la prevalencia de los trastornos mentales y ayudar en la planificación de los recursos y servicios de salud mental en esta ciudad.

Integração entre instituição de ensino e serviço no matriciamento em saúde mental: percepção dos matriciadores / Integration between educational institutions and services in the mental health support matrix: perception of professions involved in matrix support / Integración entre institución educativa y servicio en la organización matricial en salud mental: percepción de los profesionales

Objetivo: verificar a percepção dos profissionais matriciadores sobre o matriciamento em saúde mental desenvolvido por meio de integração entre instituição de ensino e serviço de saúde. Método: estudo exploratório qualitativo realizado com seis profissionais matriciadores de um Centro de Atenção Psicossocial e um Núcleo de Apoio à Saúde da Família mediante entrevistas semiestruturadas, após aprovação do Comitê de Ética em Pesquisa da instituição envolvida. Resultados: destacam-se percepções positivas, como melhorias no relacionamento/comunicação, qualificação da assistência, diminuição de encaminhamentos das estratégias saúde da família para o serviço especializado, sensibilização dos profissionais sobre cuidado em saúde mental, melhorias no acolhimento/estratificação de risco, elaboração de projeto terapêutico singular, avanço na superação do modelo biomédico e maior autonomia profissional. Contudo, encontrou-se dificuldades para realização do matriciamento, a saber, baixa adesão dos matriciados e sobrecarga de trabalho. Considerações finais: o matriciamento em saúde mental a partir da integração ensino e serviço vem contribuindo para desconstrução do modelo biomédico e reflitindo positivamente na prática dos matriciadores.

Objective: to discover how mental health matrix support through integration between educational institutions and health services is perceived by the professions involved in that support matrix. Method: this exploratory, qualitative study of six support matrix professionals at a Psychosocial Care Center and a Family Health Support Center was conducted through semi-structured interviews, after approval by the research ethics committee of the institution involved. Results: prominent positive perceptions included improved relationships/communication, better-informed care, fewer referrals to specialized services by family health strategy teams, greater sensitivity towards mental health care, improved receptiveness/risk stratification, formulation of individualized therapeutic plans, progress in surpassing the biomedical model, and greater professional autonomy. However, difficulties were encountered in introducing matrix-based support: poor adherence by matrix support staffs and overwork. Final remarks: matrix support for mental health care integration of teaching and health services has been helping to deconstruct the biomedical model and is reflecting positively in the practice of those involved in the support matrix.

Objetivo: verificar la percepción de los profesionales sobre la organización matricial en salud mental desarrollada mediante la integración entre institución educativa y servicio de salud. Método: estudio exploratorio cualitativo realizado junto a seis profesionales de un Centro de Atención Psicosocial y un Centro de Apoyo a la Salud de la Familia por medio de entrevistas semiestructuradas previa aprobación del Comité de Ética en Investigación de la institución involucrada. Resultados: resaltan percepciones positivas, como mejoras en el relacionamiento/comunicación, cualificación del cuidado, reducción de derivación de las estrategias de salud de la familia al servicio especializado, concientización de los profesionales sobre el cuidado en salud mental, mejoras en la acogida/estratificación del riesgo, elaboración del proyecto terapéutico singular, avance en la superación de modelo biomédico y mayor autonomía profesional. Sin embargo, se encontraron dificultades para realizar la organización matricial debido a la baja adherencia de los profesionales y la sobrecarga de trabajo. Consideraciones finales: la organización matricial en salud mental basada en la integración de la enseñanza y los servicios ha contribuido a la deconstrucción del modelo biomédico, mejorando la práctica de esos profesionales de organización matricial.

Machine learning models to detect social distress, spiritual pain, and severe physical psychological symptoms in terminally ill patients with cancer from unstructured text data in electronic medical records.

BACKGROUND: Few studies have developed automatic systems for identifying social distress, spiritual pain, and severe physical and phycological symptoms from text data in electronic medical records. AIM: To develop models to detect social distress, spiritual pain, and severe physical and psychological symptoms in terminally ill patients with cancer from unstructured text data contained in electronic medical records. DESIGN: A retrospective study of 1,554,736 narrative clinical records was analyzed 1 month before patients died. Supervised machine learning models were trained to detect comprehensive symptoms, and the performance of the models was tested using the area under the receiver operating characteristic curve (AUROC) and precision recall curve (AUPRC). SETTING/PARTICIPANTS: A total of 808 patients was included in the study using records obtained from a university hospital in Japan between January 1, 2018 and December 31, 2019. As training data, we used medical records labeled for detecting social distress (n = 10,000) and spiritual pain (n = 10,000), and records that could be combined with the Support Team Assessment Schedule (based on date) for detecting severe physical/psychological symptoms (n = 5409). RESULTS: Machine learning models for detecting social distress had AUROC and AUPRC values of 0.98 and 0.61, respectively; values for spiritual pain, were 0.90 and 0.58, respectively. The machine learning models accurately identified severe symptoms (pain, dyspnea, nausea, insomnia, and anxiety) with a high level of discrimination (AUROC > 0.8). CONCLUSION: The machine learning models could detect social distress, spiritual pain, and severe symptoms in terminally ill patients with cancer from text data contained in electronic medical records.

Psychosocial telemonitoring and teleorientation for older adults in the Social Security (EsSalud) during the first six months of the COVID-19 pandemic in Peru

Introduction: The Peruvian Social Security during the COVID-19 pandemic implemented a psychosocial remote care program for older adults in order to improve their quality of life and prevent the development of mental problems. The study: Analysis of secondary data from records generated by teams from the Senior Centers at the national level between May and October 2020, with the aim to describe the experience of implementing Psychosocial telemonitoring and teleorientation for elderly patients during COVID-19 pandemic. Findings: A total of 154 280 follow-ups and 36 492 remote care services were provided to older adults. The main interventions provided were emotional support (75.5%) and social counseling (53.8%). The most recorded moods were calmness and worry. Feelings of worry, stress, sadness, and fear are higher in the reports with COVID-19 compared to those without COVID-19. Conclusion: Psychosocial telemonitoring and teleorientation for older adults can be used as another way to provide comprehensive care in elderly population.

Introducción: La Seguridad Social Peruana durante la pandemia por COVID-19 implementó un programa de cuidado psicosocial remoto para personas adultas mayores con el fin de mejorar su calidad de vida y evitar el desarrollo de problemas mentales. El estudio: Análisis de datos secundarios de registros generados por equipos de los Centros del Adulto Mayor a nivel nacional entre mayo y octubre de 2020, con objetivo de describir la experiencia de implementación de telemonitoreo y teleorientación psicosocial a distancia para pacientes adultos mayores durante la pandemia por COVID-19. Hallazgos: En total se brindaron 154 280 seguimientos y 36 492 atenciones a distancia a personas adultas mayores. Las principales intervenciones brindadas fueron apoyo emocional (75,5%) y consejería social (53,8%). Los estados de ánimo más registrados fueron calma y preocupación. Los sentimientos de preocupación, tales como estrés, tristeza y miedo fueron altos en pacientes con COVID-19 en comparación con los que no tienen COVID-19. Si bien el servicio brindado en los Centros del Adulto Mayor no fue etiquetado como "prescripción social", la mayoría de los componentes abordan beneficios similares a los modelos de prescripción social en otros países. Conclusión: El telemonitoreo y la teleorientación psicosocial pueden ser usados como otro medio para proveer cuidado integral a la población adulta mayor.