Famílias ouvintes e filhos surdos: o papel da Libras na comunicação / Hearing families and deaf children: the role of Libras in communication / Familias oyentes y niños sordos: el papel de Lengua de Señas Brasileña em la comunicación

Introdução: A Língua Brasileira de Sinais (Libras) é uma língua de natureza visuo-motora com um sistema linguístico e estrutura gramatical próprio e sua aquisição em tempo oportuno é importante para o desenvolvimento cognitivo e comunicativo da criança surda. As famílias ouvintes de crianças surdas devem se engajar no aprendizado dessa língua, uma vez que na ausência do conhecimento da Libras, podem apresentar dificuldades de comunicação e de relacionamento com seu filho surdo. Objetivo: O objetivo deste estudo foi compreender o papel da Libras na comunicação de familiares ouvintes e seus filhos surdos atendidos em um centro de reabilitação. Métodos: Trata-se de um estudo transversal, de caráter qualitativo. Foi aplicado um roteiro de entrevista semiestruturado com 10 questões abertas a pais ouvintes de crianças surdas que participam de atendimentos em um centro de reabilitação. A análise dos dados foi realizada por meio do método análise de conteúdo. Resultados: Ao todo foram entrevistadas 10 mães de crianças surdas. As idades das mães variaram de 21 a 47 anos. Nove mães afirmaram usar a Libras em casa com seus filhos todos os dias e todas relataram usá-la em atividades cotidianas da criança. Todas as mães afirmaram que o uso da Libras trouxe benefícios para o relacionamento na díade mãe-filho. Conclusão: Os achados revelam um importante papel da Libras tanto na comunicação de familiares ouvintes e seus filhos surdos, como no cotidiano desses lares. (AU)

Introduction: The Brazilian Sign Language (Libras) is a visual-motor language with its linguistic system and grammatical structure and its timely acquisition is important for deaf children's cognitive and communicative development. Deaf children's hearing families should engage in learning this language, since not knowing Libras may lead to communication and relationship difficulties with their deaf children. Objective: This study aimed to understand the role of Libras in the communication between hearing family members and their deaf children treated at a rehabilitation center. Methods: This cross-sectional qualitative study applied a semi-structured interview with 10 open-ended questions to hearing parents of deaf children who receive care at a rehabilitation center. Data were analyzed with the content analysis method. Results: Altogether, 10 mothers of deaf children were interviewed. Their ages ranged from 21 to 47 years. Nine mothers said they used Libras at home with their children every day, and all reported using it in their child's daily activities. All mothers stated that the use of Libras brought benefits to the mother-child relationship. Conclusion: The findings highlight the important role of Libras in the daily lives and communication of hearing family members and their deaf children. (AU)

Introducción: La Lengua de Señas Brasileña (Libras) es una lengua visomotora con sistema lingüístico y estructura gramatical propios y su adquisición oportuna es importante para el desarrollo cognitivo y comunicativo del niño sordo. Las familias oyentes de niños sordos deben involucrarse en el aprendizaje de este idioma, ya que en ausencia del conocimiento de Libras, pueden tener dificultades en la comunicación y las relaciones con su hijo sordo. Objetivo: El objetivo de este estudio fue comprender el papel de Libras en la comunicación de los familiares oyentes y sus hijos sordos atendidos en un centro de rehabilitación auditiva. Métodos: Se trata de un estudio transversal, cualitativo. Se aplicó un guión de entrevista semiestructurada con 10 preguntas abiertas a padres oyentes de niños sordos que participan en el cuidado en un centro de rehabilitación. El análisis de los datos se realizó mediante el método de análisis de contenido. Resultados: En total, se entrevistaron 10 madres de niños sordos. Las edades de las madres oscilaron entre 21 y 47 años. Nueve madres dijeron que usan Libras en casa con sus hijos todos los días y todas informaron que lo usan en las actividades diarias de sus hijos. Todas las madres afirmaron que el uso de Libras trajo beneficios a la relación madre-hijo. Conclusión: Los hallazgos revelan un papel importante de Libra tanto en la comunicación de los miembros oyentes de la familia y sus hijos sordos, como en la vida diaria de estos hogares. (AU)

The Effect of Informing Patient Relatives with a Short Message on Anxiety Levels during Cardiovascular Surgery in Türkiye: A Randomized Controlled Trial.

BACKGROUND: Surgical procedures cause a certain level of anxiety in the relatives of the patients, it has been observed that heart surgeries cause more anxiety. AIM: To determine the effects of informing patients' relatives with short messages on anxiety levels during cardiovascular surgery. METHODS: The study was conducted as a randomized controlled research investigation from October 1, 2015, to December 31, 2022, at the cardiovascular surgery operating room of a university hospital and included 84 patient relatives (42 experimental and 42 control group). The Patient Relatives Information Form and the State and Trait Anxiety Inventory were used to collect the study data. The patients' relatives in the experimental group were informed by short messages (preparations for surgery have begun, your relative's surgery has started, your relative's surgery is still ongoing, and your relative's surgery is completed) during the surgery. State Anxiety Inventory was re-administered to all patients' relatives after cardiovascular surgery. The study was registered with ClinicalTrials.gov (NCT05157789). RESULTS: It was found that the postoperative State Anxiety Inventory score of the experimental group was significantly lower than that of the control group (P < 0.001). The difference between preoperative and postoperative state anxiety scores was significantly higher in the experimental group (P < 0.001). CONCLUSION: Informing the patients' relatives with a short message during cardiovascular surgery significantly reduced the level of anxiety.

Research Trends in Family-Centered Care for Children With Chronic Disease: Keyword Network Analysis.

Family-centered care is an approach to promote the health and well-being of children with chronic diseases and their families. This study aims to explore the knowledge components, structures, and research trends related to family-centered care for children with chronic conditions. We conducted the keyword network analysis in three stages using the keywords provided by the authors of each study: (1) search and screening of relevant studies, (2) keyword extraction and refinement, and (3) data analysis and visualization. The core keywords were child, adolescence, parent, and disabled. Four cohesive subgroups were identified through degree centrality. Research trends in the three phases of a recent decade have been changed. With the systematic understanding of the context of the knowledge structure, the future research and effective strategy establishment are suggested based on family-centered care for children with chronic disease.

Higher prevalence of harbouring BCR::ABL1 in first-degree relatives of chronic myeloid leukaemia (CML) patients compared to normal population.

BACKGROUND: The role of familial influence in chronic myeloid leukaemia (CML) occurrence is less defined. Previously, we conducted a study to determine the prevalence of harbouring BCR::ABL1 in our local adult normal population (designated as StudyN). We present our current study, which investigated the prevalence of harbouring BCR::ABL1 in the normal first-degree relatives of local CML patients (designated as StudyR). We compared and discussed the prevalence of StudyR and StudyN to assess the familial influence in CML occurrence. METHODS: StudyR was a cross-sectional study using convenience sampling, recruiting first-degree relatives of local CML patients aged ≥ 18 years old without a history of haematological tumour. Real-time quantitative polymerase chain reaction standardised at the International Scale (BCR::ABL1-qPCRIS) was performed according to standard laboratory practice and the manufacturer's protocol. RESULTS: A total of 96 first-degree relatives from 41 families, with a mean age of 39 and a male-to-female ratio of 0.88, were enrolled and analysed. The median number of relatives per family was 2 (range 1 to 5). Among them, 18 (19%) were parents, 39 (41%) were siblings, and 39 (41%) were offspring of the CML patients. StudyR revealed that the prevalence of harbouring BCR::ABL1 in the first-degree relatives was 4% (4/96), which was higher than the prevalence in the local normal population from StudyN, 0.5% (1/190). All four positive relatives were Chinese, with three of them being female (p > 0.05). Their mean age was 39, compared to 45 in StudyN. The BCR::ABL1-qPCRIS levels ranged between 0.0017%IS and 0.0071%IS, similar to StudyN (0.0023%IS to 0.0032%IS) and another study (0.006%IS to 0.016%IS). CONCLUSION: Our study showed that the prevalence of harbouring BCR::ABL1 in the first-degree relatives of known CML patients was higher than the prevalence observed in the normal population. This suggests that familial influence in CML occurrence might exist but could be surpassed by other more dominant influences, such as genetic dilutional effects and protective genetic factors. The gender and ethnic association were inconsistent with CML epidemiology, suggestive of a higher familial influence in female and Chinese. Further investigation into this topic is warranted, ideally through larger studies with longer follow-up periods.

Exploring Family Perspectives on a Group-Based Hands-on Advanced Carbohydrate Counting Education Program for Children and Adolescents with Type 1 Diabetes: A Qualitative Study.

The care needs of children and adolescents with type 1 diabetes and their families are frequently approached as if they were identical to those of adults, overlooking the distinct challenges young people may face. It has been stated that children and adolescents often find conventional conversations with diabetes specialists tiresome and unpleasant. The present study focuses on familial experiences of an advanced carbohydrate counting program tailored to children and adolescents. The data encompass semi-structured interviews with families who participated in a group-based child-centered advanced carbohydrate counting program. The analysis revealed five themes: (1) peer-to-peer interaction is an essential determinant of sharing and learning; (2) illness perception significantly influences dietary intake; (3) normalization of diabetes in everyday life eases the disease burden; (4) repetition of dietary knowledge is important for retention; and (5) creating a safe and playful learning environment is crucial to engaging children and adolescents in their own treatment. The present findings suggest that it would be beneficial to explore and consider alternative teaching approaches that are adapted to a more interactive and engaging learning environment that is specifically tailored to children and adolescents. This entails moving away from traditional individual approaches.

Family Resilience and Its Influencing Factors in Patients with Stress Urinary Incontinence after Cervical Cancer Surgery: A Retrospective Study.

OBJECTIVE: This study aimed to analyse the family resilience of patients with stress urinary incontinence (SUI) after cervical cancer surgery and its influencing factors. METHODS: Patients with cervical cancer postoperative SUI admitted to our hospital from May 2020, to May 2023, were retrospectively selected. They were divided into low-resilience group and high-resilience group in accordance with the Family Resilience Questionnaire (FaREQ). The general demographic data of the two groups were statistically analysed, and correlation and logistic regression analyses were performed. RESULTS: The FaREQ score of 222 patients was (93.61 ± 8.45). Amongst these patients, 21.62% scored less than 84 points, and 78.38% scored more than 84 points. Significant differences were found in the educational level, indwelling catheter time, family monthly income, religious belief, hope index, psychological resilience, family function and social support between the two groups (p < 0.05). A significant positive correlation was observed between family resilience and the above indicators (p < 0.05). The variance inflation coefficient values of educational level and indwelling catheter time were 15.764 and 43.766, and the tolerance values were 0.063 and 0.023, respectively. After removing them, family monthly income, religious belief, hope index, psychological resilience, family function and social support were the factors affecting the family resilience level of patients with SUI after cervical cancer surgery. CONCLUSIONS: The level of family resilience of patients with SUI after cervical cancer surgery is low. Many factors, such as family monthly income and religious belief, affect the level of resilience. Therefore, corresponding measures could be formulated in advance to improve the level of family resilience of such patients.

The mediating effect of perceived social support between family resilience and meaning in life in breast cancer patients.

PURPOSE: The beneficial effects of family resilience and meaning in life on patients are established, but limited is known for the effect of perceived social support. We aim to investigate the impact of family resilience on the meaning of life among Chinese patients with breast cancer (BC) and to further detect whether perceived social support mediated this association. METHODS: From February to June 2022, we conducted this cross-sectional study with 276 women who were diagnosed with BC in a tertial hospital in Guangdong province, China. The Chinese version of Meaning in Life Scale (C-MiLS) was used to measure the meaning in life. The Chinese version of the family resilience assessment scale (C-FRAS) and the perceived social support scale (PSSS) were adopted to obtain the family resilience and perceived social support, respectively. The mediating effect of perceived spousal support was estimated using the bootstrapped confidence interval (CI) via IBM SPSS AMOS 22.0. RESULTS: The mean scores were 60.79 ± 11.63 for meaning in life, 82.08 ± 11.48 for family resilience, and 62.72 ± 12.19 for perceived social support, respectively. Our results indicated the positive correlations of meaning in life with family resilience (ß = 0.822, P < 0.05) and perceived social support (ß = 0.886, P < 0.05). The perceived social support exerted the mediating effect in the relationship between family resilience and meaning in life (ß = 0.368 [95%CI, 0.274, 0.450], P < 0.001), accounting for 54.6% of the variance in meaning in life. CONCLUSIONS: Our findings highlight that family resilience and perceived social support should be enhanced for BC patients to improve their meaning in life. In particular, the association between family resilience and meaning in life was positively mediated by perceived social support. Thus, interventions for improving family resilience and perceived social support might be useful in easing psychological distress and improving meaning in life in individuals with BC.

Real-time procedure information sharing as a means to reduce perioperative anxiety in families of children undergoing elective surgery - a randomized controlled study.

OBJECTIVE: To investigate whether the surgical process information sharing system could alleviate the parental anxiety during a pediatric selective operation. DESIGN: Randomized controlled trial. METHODS: A questionnaire survey was conducted one day before surgery for the enrolled participants. Family members assigned to the intervention group received real-time process information sharing through service reminders during the surgical period, while the control group received standard perioperative education. The Pittsburgh Sleep Quality Index (PSQI) was used to evaluate sleep quality during the perioperative period, and the State of Cohesion-13 Scale (SOC-13) and Self-rating Anxiety Scale (SAS) were used to assess anxiety levels. Satisfaction levels during the perioperative period were assessed through a follow-up survey conducted one day after surgery. RESULTS: The intervention group showed better scores in terms of PSQI, SOC-13, SAS, and postoperative satisfaction levels at various time points compared to the control group, with statistically significant differences observed (P < 0.05). CONCLUSION: Real-time process information sharing is effective in reducing perioperative sleep disorders and anxiety among family members of pediatric patients, as well as improving satisfaction levels. This approach not only establishes a process and mechanism for effective doctor-patient communication but also helps implement continuous perioperative care, thereby optimizing internet healthcare services.

Availability and stability of palliative care for family members of terminally ill patients in an integrated model of health and social care.

BACKGROUND: Palliative care and the integration of health and social care have gradually become the key direction of development to address the aging of the population and the growing burden of multimorbidity at the end of life in the elderly. AIMS: To explore the benefits/effectiveness of the availability and stability of palliative care for family members of terminally ill patients in an integrated institution for health and social care. METHODS: This prospective observational study was conducted at an integrated institution for health and social care. 230 patients with terminal illness who received palliative care and their family members were included. Questionnaires and scales were administered to the family members of patients during the palliative care process, including quality-of-life (SF-8), family burden (FBSD, CBI), anxiety (HAMA), and distress (DT). We used paired t-tests and correlation analyses to analyze the data pertaining to our research questions. RESULTS: In the integrated institution for health and social care, palliative care can effectively improve quality of life, reduce the family's burden and relieve psychological impact for family members of terminally ill patients. Palliative care was an independent influencing factor on the quality of life, family burden, and psychosocial status. Independently of patient-related and family-related factors, the results are stable and widely applicable. CONCLUSION: The findings underline the availability and stability of palliative care and the popularization of an integrated service model of health and social care for elder adults.

Development and validation of a supportive programme for family caregivers of children suffering from cystic fibrosis: protocol for a sequential exploratory mixed-methods study.

INTRODUCTION: Families with children who have cystic fibrosis (CF) face a multitude of challenges. They require complex and time-consuming daily care, various forms of knowledge and intricate care responsibilities. One of the most critical challenges that Iranian families of children with CF face is the lack of adequate support from health teams in the early stages of diagnosis, frequent hospitalisation and the postdischarge process. Unfortunately, limited studies have been conducted in this field, and the Iranian society lacks a comprehensive support programme for these families after leaving treatment centres or home care teams. Therefore, it is necessary to identify and redefine the needs of these families for better care and support in Iran. METHODS AND ANALYSIS: A mixed-method research design with an exploratory sequential approach will be used in this study. The study consists of three stages: stage (1) the qualitative phase (conventional content analysis and scoping review); stage (2) the programme design phase (development of a support programme) and stage (3) the quantitative phase (validation of the programme through the Delphi method). In the first stage, data will be collected through interviews. Key concepts, evidence and gaps in research will also be identified, collected and analysed through a scoping review. In the second stage, a support programme will be designed based on the results of the content analysis of interviews and the findings from the scoping review. In the final phase, the study will aim to validate the designed programme through a Delphi study. ETHICS AND DISSEMINATION: This study formed part of a Ph.D. degree and was approved by the ethics committee of Tabriz University of Medical Sciences (IR.TBZMED.REC.1402.395). Informed consent will be obtained from all study participants. Findings will be published in a peer-reviewed journal.

Dignity enhanced through faith & family support in palliative care: a qualitative study.

BACKGROUND: Dignity is integral to palliative care. Illness can diminish it, causing hopelessness and the wish to hasten death. Yet, dignity is a complex multidimensional phenomenon, influenced by values and context. Understanding its varying interpretations can inform practice and policy. The aim of the study is to explore the understanding of dignity in adult patients with palliative care needs from a Lebanese perspective and how it is preserved during illness and while receiving health services. DESIGN: Qualitative interview study underpinned with a social constructionist lens. Fourteen patients recruited from home-based hospice and outpatient clinics in Lebanon. Data analysed using reflexive thematic analysis. RESULTS: Four themes were developed across all the interviews: (a) Dignity anchored through faith in God and religious practices; (b) Family support in maintaining physical, psychological wellbeing, and social connectedness; (c) Physical fitness, mental acuity, and healthy appearance through which patients may escape the stigma of disease, (d) accessible, equitable, and compassionate healthcare. DISCUSSION: Dignity is elusive and difficult to define but faith and religious beliefs play a significant contribution in this study. For the participants, illness is seen as a natural part of life that does not necessarily diminish dignity, but it is the illness related changes that potentially affect dignity. Findings show the importance of family and children in preserving dignity during illness and how their active presence provide a sense of pride and identity. Participants aspired to restore physical, social, and mental well-being to reclaim their dignity and normalize their lives. Challenges related to physical appearance, memory loss, vitality, and social stigma associated with illness diminished dignity. Accessible, equitable and compassionate healthcare services are also crucial in preserving dignity. Participants valued clear communication, respect, and empathy from healthcare providers and identified affordability of care essential for maintaining dignity. CONCLUSION: Faith in God, and strong family ties are dominant elements to maintaining dignity in the Lebanese context. Relational connectedness with family, children or God is also a need in maintaining dignity in other communal countries with variations in emphasis. The study indicates that religious and cultural context shapes the needs and perceptions of dignity during illness. These findings are likely to be transferable to many Middle Eastern countries but also countries with strong religious and family ties globally.

Graph-Based Imputation Methods and Their Applications to Single Donors and Families.

The outcome of Hematopoietic Stem Cell (HSCT) and organ transplant is strongly affected by the matching of the HLA alleles of the donor and the recipient. However, donors and sometimes recipients are often typed at low resolution, with some alleles either missing or ambiguous. Thus, imputation methods are required to detect the most probably high-resolution HLA haplotypes consistent with a typing. Such imputation algorithms require predefined haplotype frequencies. As such, the phasing of the typing is required for both imputation and frequency generation.We have developed a new approach to HLA haplotype and genotype imputation, where first all candidate phases of a typing are explicated, and then the ambiguity within each phase is solved. This ambiguity is solved through a graph structure of all partial haplotypes and the haplotypes consistent with them.This phasing approach was used to produce an imputation algorithm (GRIMM-Graph Imputation and Matching). GRIMM was then combined with the possibility of combining information from multiple races to produce MR-GRIMM (Multi-Race GRIMM). When family information is available, the phasing of each family member can be restricted by the others. We propose GRAMM (GRaph-bAsed faMily iMputation) to phase alleles in family pedigree HLA typing data and in mother-cord blood unit pairs. Finally, we combined MR-GRIMM with an expectation-maximization (EM) algorithm to estimate haplotype frequencies sharing information between races to produce MR-GRIMME (MR-GRIMM EM).We have shown that these algorithms naturally combine information between races and family members. The accuracy of each of these algorithms is significantly better than its current parallel methods. MR-GRIMM leads to high accuracy in matching predictions. GRAMM better imputes family members than either MR-GRIMM or any existing algorithm and has practically no phasing errors. MR-GRIMME obtains a higher likelihood than existing algorithms.MR-GRIMM, MR-GRIMME, and GRAMM are available as servers or through stand-alone versions in GITHUB and PyPi, as detailed in the appropriate sections.

End-of-life care needs in cancer patients: a qualitative study of patient and family experiences.

BACKGROUND: Cancer is a disease that transcends what is purely medical, profoundly affecting the day-to-day life of both patients and family members. Previous research has shown that the consequences of cancer are greatly aggravated in patients at the end of life, at a time when they must also grapple with numerous unmet needs. The main objective of this study was to obtain more in-depth insight into these needs, primarily in patients with end-stage cancer nearing death. METHODS: Semi-structured interviews were conducted in Spain with cancer patients at the end of life (n = 3) and their family members (n = 12). The findings from the interviews were analyzed using qualitative thematic analysis and a grounded theory approach. RESULTS: Four major themes emerged from the interviews that explored the needs and concerns of patients with cancer at the end of life: (1) physical well-being (2) emotional well-being (3) social well-being and (4), needs relating to information and autonomous decision-making. The interviews also shed light on the specific needs of family members during this period, namely the difficulties of managing increased caregiver burden and maintaining a healthy work-life balance. CONCLUSIONS: A lack of support, information and transparency during a period of immense vulnerability makes the end-of-life experience even more difficult for patients with cancer. Our findings highlight the importance of developing a more in-depth understanding of the needs of this population, so that informed efforts can be made to improve palliative healthcare and implement more comprehensive care and support at the end of life.

Integration of child life into adult oncology: A mixed-methods feasibility study.

BACKGROUND: Cancer in a loved one can have negative effects on child health and development. Child Life Specialists (CLSs) specialize in assisting children understand and cope with difficult medical scenarios but are generally not available in adult care facilities to support the needs of patient-families with minor children. We conducted a mixed-methods study of the implementation of a pilot CLS program at a tertiary oncology centre. METHODS: We collected administrative and clinical data on referred families; encounter data; and patient-reported questionnaire data before and 2 months after engagement with the program. RESULTS: Over the initial 10 months, 98 families were referred, 91 of whom engaged through a total of 257 clinical encounters. The cancer patient in the family was most commonly a woman with a mean age of 45 years and in the role of mother. Breast cancer was the most common diagnosis (24%) and 78% of patients had stage IV disease. Most families had >1 child at home, and children were most commonly school-aged (5-14y). Phone and Hospital/Clinic visits accounted for the largest portion of CLS time. Interventions ranged from diagnosis education through to bereavement support. Most cancer patients indicated that the program was helpful to them and their families. There were trends of moderate improvements on patient reported outcomes. CONCLUSION: Our study was able to provide an understanding of the initial CLS program operations to guide program development and future study. Such a program holds promise as an important aspect of adult oncology family-centered care.

[Psychological impact on primary caregivers of family members undergoing palliative treatment a review on quality of life] / Impacto psicológico en los cuidadores principales de familiares bajo tratamiento paliativo.

Primary caregivers of family members undergoing palliative care provide significant care, and as a result, their quality of life may be adversely affected. A systematic review was conducted to synthesize the evidence on caregiver's quality of life. Pubmed database and the digital library of the Universidad Católica Argentina were used. Thirteen articles were reviewed that addressed the following topics: general quality of life, impact on physical, emotional, social and spiritual dimensions, relationship between caregiver gender and quality of life. It is evident in the literature reviewed the importance of an adequate assessment of signs and symptoms in family caregivers in order to provide comprehensive assistance to promote their quality of life.

Los cuidadores principales de familiares que se encuentran bajo tratamiento paliativo brindan una atención significativa, y como resultado, su calidad de vida puede verse negativamente afectada. Se llevó a cabo una revisión sistemática para sintetizar la evidencia sobre la calidad de vida de estos cuidadores. Se utilizaron la base de datos Pubmed y la biblioteca digital de la Universidad Católica Argentina. Se revisaron 13 artículos que plantearon las siguientes temáticas: calidad de vida general, impacto en las dimensiones física, emocional, social y espiritual, relación entre el género del cuidador y la calidad de vida. Se evidencia en la literatura revisada la importancia de una adecuada evaluación de los signos y síntomas en los cuidadores familiares con el fin de poder brindar asistencia integral para favorecer su calidad de vida.

The information needs of relatives of childhood cancer patients and survivors: A systematic review of quantitative evidence.

OBJECTIVE: We aimed to: (1) summarize the quantitative evidence on the information needs of relatives of childhood cancer patients, survivors, and children deceased from cancer; and (2) identify factors associated with these needs. METHODS: PubMed, PsycINFO, Scopus, and CINAHL were systematically searched. The methodological quality of all included publications was assessed, and the extracted data were analyzed using narrative synthesis. RESULTS: Of 5810 identified articles, 45 were included. Information needs were classified as unmet, met (satisfied), and unspecified and categorized into five domains: medical information, cancer-related consequences, lifestyle, family, and support. Most unmet information needs concerned cancer-related consequences (e.g., late effects), while information needs on support were generally met. Migrant background and higher education were associated with higher information needs among parents. Siblings had lower information needs than parents. CONCLUSION: This systematic review provides a comprehensive overview of the information needs of relatives in the context of childhood cancer, showing that information on cancer-related consequences is needed most often. The socioeconomic background of the relatives needs continued consideration throughout the cancer trajectory. PRACTICE IMPLICATIONS: Our findings suggest the need for personalized information. Healthcare professionals should adapt their communication strategies to respond to the different and evolving needs of all affected relatives.

A systematic review of barriers and facilitators to antenatal screening for HIV, syphilis or hepatitis B in Asia: Perspectives of pregnant women, their relatives and health care providers.

BACKGROUND: Despite improvements, the prevalence of HIV, syphilis, and hepatitis B remains high in Asia. These sexually transmitted infections (STIs) can be transmitted from infected mothers to their children. Antenatal screening and treatment are effective interventions to prevent mother-to-child transmission (MTCT), but coverage of antenatal screening remains low. Understanding factors influencing antenatal screening is essential to increase its uptake and design effective interventions. This systematic literature review aims to investigate barriers and facilitators to antenatal screening for HIV, syphilis, and hepatitis B in Asia. METHODS: We conducted a systematic review by searching Ovid (MEDLINE, Embase, PsycINFO), Scopus, Global Index Medicus and Web of Science for published articles between January 2000 and June 2023, and screening abstracts and full articles. Eligible studies include peer-reviewed journal articles of quantitative, qualitative and mixed-method studies that explored factors influencing the use of antenatal screening for HIV, syphilis or hepatitis B in Asia. We extracted key information including study characteristics, sample, aim, identified barriers and facilitators to screening. We conducted a narrative synthesis to summarise the findings and presented barriers and facilitators following Andersen's conceptual model. RESULTS: The literature search revealed 23 articles suitable for inclusion, 19 used quantitative methods, 3 qualitative and one mixed method. We found only three studies on syphilis screening and one on hepatitis B. The analysis demonstrates that antenatal screening for HIV in Asia is influenced by many barriers and facilitators including (1) predisposing characteristics of pregnant women (age, education level, knowledge) (2) enabling factors (wealth, place of residence, husband support, health facilities characteristics, health workers support and training) (3) need factors of pregnant women (risk perception, perceived benefits of screening). CONCLUSION: Knowledge of identified barriers to antenatal screening may support implementation of appropriate interventions to prevent MTCT and help countries achieve Sustainable Development Goals' targets for HIV and STIs.

Men with metastatic prostate cancer carrying a pathogenic germline variant in breast cancer genes: disclosure of genetic test results to relatives.

Some patients with metastatic prostate cancer carry a pathogenic germline variant (PV) in a gene, that is mainly associated with an increased risk of breast cancer in women. If they test positive for such a PV, prostate cancer patients are encouraged to disclose the genetic test result to relatives who are at risk in case the carrier status changes the relatives' medical care. Our study aimed to investigate how men who learned they carry a PV in BRCA1, BRCA2, PALB2, CHEK2 or ATM disclosed their carrier status to at-risk relatives and to assess the possible psychological burden for the carrier and their perception of the burden for relatives. In total, 23 men with metastatic prostate cancer carrying a PV completed the IRI questionnaire about family communication; 14 also participated in a semi-structured interview. Patients felt highly confident in discussing the genetic test result with relatives. The diagnosis of prostate cancer was experienced as a burden, whereas being informed about genetic testing results did in most cases not add to this burden. Two patients encountered negative experiences with family communication, as they considered the genetic test result to be more urgent than their relatives. This mixed-methods study shows that metastatic prostate cancer patients with a PV in genes mainly associated with increased risk of breast cancer feel well-equipped to communicate about this predisposition in their families. Carriers felt motivated to disclose their genetic test result to relatives. Most of them indicated that the disclosure was not experienced as a psychological burden.

How hereditary cancer risk disclosure to relatives is handled in practice - Patient perspectives from a Swedish cancer genetics clinic.

OBJECTIVES: Hereditary cancer risks can be effectively managed if at-risk relatives enroll in surveillance and preventive care. Family-mediated risk disclosure has internationally been shown to be incomplete, selective and leave over a third of eligible at-risk individuals without access to genetic counseling. We explored patients handling of cancer risk information in practice. METHODS: We conducted twelve semi-structured interviews with patients who had completed their genetic counseling and been asked to disclose risk information to relatives. Questions were designed to investigate lived experiences of communicating hereditary risk and focused on disclosure strategies, intrafamilial interactions and emotional responses. RESULTS: Qualitative content analysis yielded five categories. These span personal fears, shared responsibilities, feeling of empowerment, innovative solutions and unmet needs. Patients put high value on collaboration with their genetic healthcare professionals but also solicited better overview of the counseling process and more personalized, case-tailored information. CONCLUSIONS: Our results add novel insights about the practical strategies employed by genetic counselees and their motivations behind disclosing hereditary risk information to relatives. PRACTICE IMPLICATIONS: A patient-centered cancer genetics care would clarify roles and responsibilities around risk disclosure, inform counselees about the process upfront and tailor information to offer case-specific data with the family's inheritance pattern explained.

Enhancing end-of-life care quality and achieving a good death for the elderly in Japan.

BACKGROUND: In the context of an aging populations, there is an escalating need for palliative care tailored to the needs of the elderly. This study aimed to assess differences in symptoms and good death among the elderly, along with the structures and processes involved in end-of life care, and to explore the impact of age on achieving a good death. METHODS: We conducted a questionnaire survey for bereaved family members of patients with cancer, heart disease, stroke, pneumonia, and kidney failure in 2019 and 2020. The study population was categorized into the following age groups: ≤64, 65-74, 75-84, and ≥85. The outcomes included symptom intensity, achievement of a good death, and receipt of quality care. RESULTS: In total, 62,576 bereaved family members agreed to participate in the survey (response rate; 54.0 %). The weighted percentages of 'severe' and 'very severe' symptoms decreased with age. These trends were observed across age groups, even among the elderly. The strongest effect of age on achieving a good death was found for 'feeling that life is complete' with reference to those aged ≤64 years: 65-74 years (odds ratio [OR]; 2.09, 95 % CI; 1.94 to 2.25), 75-84 years (OR; 4.86, 95 % CI; 4.52 to 5.22) and ≥85 years (OR; 12.8, 95 % CI; 11.9 to 13.8). CONCLUSION: Age-specific differences were observed in quality of death, quality of care, and symptom intensity. It is important to provide individualized consideration for each age group rather than categorizing them broadly as the elderly when caring for them.