Rol comunicativo del cuidador en pacientes con accidente cerebrovascular, Sincelejo, Colombia / The communicative role of caregivers assisting stroke patients from Sincelejo, Colombia / Papel comunicativo do cuidador em pacientes com acidente vascular cerebral, Sincelejo, Colômbia

Introducción: Las enfermedades cerebrovasculares son consideradas un problema de salud pública que afectan muchas capacidades en el individuo, entre ellas la comunicación; de esta manera el cuidador cumple un papel fundamental en su recuperación. Objetivo: Describir el rol comunicativo del cuidador en la atención a pacientes con secuelas de accidente cerebrovascular en la ciudad de Sincelejo, Colombia. Materiales y métodos: Paradigma positivista, enfoque cuantitativo y estudio descriptivo de corte transversal realizado con 40 cuidadores, seleccionados según muestreo por criterios y reclutamiento en cadena. Se utilizó una encuesta sociodemográfica, una sobre favorecimiento y bienestar comunicativo y Escala Likert, se realizó análisis de fiabilidad y consistencia interna del instrumento. Resultados: Predominaron cuidadores de sexo femenino, sobresale el cuidador informal, con estudios de secundaria y estrato socioeconómico bajo. Se encontró una actitud favorable en la competencia del ser y saber hacer, prima el buen trato, justicia y respeto. La competencia del saber evidenció actitud desfavorable, caracterizada por un conocimiento limitado frente a la patología, insuficientes destrezas, técnicas y habilidades para cumplir sus funciones y estrategias empleadas. Conclusión: Es necesario cualificar al cuidador en la atención del paciente con accidente cerebrovascular, mediante programas de que dinamicen la competencia del ser, saber y saber hacer

Introduction: Cerebrovascular diseases are a public health problem affecting the different capabilities of patients, including communication. Thus, caregivers play a fundamental role in their recovery. Objective: To describe the communicative role of caregivers in the support of patients with stroke sequelae in the city of Sincelejo, Colombia. Materials and methods: A positivist paradigm, quantitative approach, and descriptive cross-sectional study was carried out with 40 caregivers, who were selected according to criteria sampling and chain recruitment. A sociodemographic survey about favorability and communicative well-being as well as the Likert Scale were applied. A reliability and internal consistency analysis was conducted. Results: The majority of caregivers were women. Informal caregivers, with high school education, and belonging to low socioeconomic status were also predominant. A positive attitude regarding competences such as being and knowing what to do; appropriate treatment of patients, with justice and respect, were observed as common features. The knowledge competence was considered unfavorable, which was characterized by limited understanding regarding pathology, strategies used, and insufficient skills, techniques, and abilities to fulfill their functions. Conclusions: Caregivers of stroke patients should be qualified through programs that improve the being, knowing, and knowing how to do competencies.

Introdução: As doenças cerebrovasculares são consideradas um problema de saúde pública que afeta diversas capacidades do indivíduo, incluindo a comunicação; desta forma, o cuidador desempenha um papel fundamental na sua recuperação. Objetivo: Descrever o papel comunicativo do cuidador no cuidado de pacientes com sequelas de acidente vascular cerebral na cidade de Sincelejo, Colômbia. Materiais e métodos: Paradigma positivista, abordagem quantitativa e estudo transversal descritivo realizado com 40 cuidadores, selecionados segundo critérios de amostragem e recrutamento em cadeia. Foi utilizado um inquérito sociodemográfico, um de favorabilidade e bem-estar comunicativo e uma Escala Likert, foi realizada uma análise da fiabilidade e consistência interna do instrumento. Resultados: Predominaram cuidadores do sexo feminino, destacando-se os cuidadores informais, com escolaridade média e baixo nível socioeconômico. Encontrou-se na competição uma atitude favorável por ser e saber fazer, prevalecendo o bom tratamento, a justiça e o respeito. A competência conhecimento apresentou atitude desfavorável, caracterizada por conhecimento limitado sobre a patologia, habilidades, técnicas e habilidades insuficientes para cumprir suas funções e estratégias utilizadas. Conclusões: É necessário qualificar o cuidador no cuidado ao paciente com AVC, por meio de programas que potencializem a competência de ser, saber e saber fazer.

Relação entre apoio social e sono de pessoas idosas cuidadoras em vulnerabilidade social / Relationship between social support and sleep of elderly caregivers in social vulnerability / Relación entre apoyo social y sueño de adultos mayores cuidadores con vulnerabilidad social

Objetivo: analisar a relação entre apoio social e qualidade do sono de pessoas idosas que cuidam de outros idosos em ambiente de vulnerabilidade social. Método: estudo transversal realizado com 65 cuidadores entrevistados por meio de instrumento de caracterização, Índice de Katz, Escala de Lawton e Brody, Índice de Qualidade do Sono de Pittsburgh e Escala de Apoio Social do Medical Outcomes Study, com dados analisados com testes de comparação e de correlação. Resultados: a maioria eram mulheres, cônjuges do idoso cuidado e possuíam sono de má qualidade. Observou-se correlação fraca e inversa entre má qualidade do sono e a dimensão interação social positiva (Rho=-0,27; p=0,028). Identificou-se relação significativa entre: apoio material e disfunção diurna (p=0,034); apoio afetivo e eficiência do sono (p=0,026); interação social positiva e qualidade subjetiva do sono (p=0,001) e disfunção diurna (p=0,008). Conclusão: Quanto maior a interação social positiva, melhor é a qualidade do sono.

Objective: to analyze the relationship between social support and sleep quality of elderly individuals who care for other elderly individuals in a socially vulnerable environment. Method: a cross-sectional study conducted with 65 caregivers interviewed using a characterization instrument, Katz Index, Lawton and Brody Scale, Pittsburgh Sleep Quality Index, and Medical Outcomes Study Social Support Scale, with data analyzed using comparison and correlation tests. Results: the majority were women, spouses of the elderly being cared for, and had poor sleep quality. A weak and inverse correlation was observed between poor sleep quality and the positive social interaction dimension (Rho=-0.27; p=0.028). Significant relationships were identified between: material support and daytime dysfunction (p=0.034); emotional support and sleep efficiency (p=0.026); positive social interaction and subjective sleep quality (p=0.001), as well as daytime dysfunction (p=0.008). Conclusion: The higher the positive social interaction, the better the sleep quality.

Objetivo: analizar la relación entre el apoyo social y la calidad del sueño de personas mayores que cuidan de otras personas mayores en entornos socialmente vulnerables. Método: estudio transversal realizado con 65 cuidadores entrevistados mediante un instrumento de caracterización, Índice de Katz, Escala de Lawton y Brody, Índice de Calidad del Sueño de Pittsburgh y Escala de Apoyo Social del Medical Outcomes Study, los datos fueron analizados mediante pruebas de comparación y correlación. Resultados: la mayoría eran mujeres, cónyuges del adulto mayor que recibe el cuidado y tenían mala calidad del sueño. Se observó una correlación débil e inversa entre la mala calidad del sueño y la dimensión de interacción social positiva (Rho=-0,27; p=0,028). Se identificó que había relación significativa entre: apoyo material y disfunción diurna (p=0,034); apoyo afectivo y eficiencia del sueño (p=0,026); interacción social positiva y calidad subjetiva del sueño (p=0,001) y disfunción diurna (p=0,008). Conclusión: Cuanto mayor sea la interacción social positiva, mejor será la calidad del sueño.

Study protocol OKRA: orientation compass for the preparing, delivering and following up on breaking bad news conversations in paediatric oncology.

INTRODUCTION: In paediatric oncology, 'breaking bad news'-BBN-like cancer diagnosis is perceived as particularly challenging. Enabling a trialogue between children with their relatives and health professionals requires profound communication skills. Lacking the skills, experience or adequate support tools might result in negative consequences for both paediatric oncologists as BBN transmitters and BBN receivers as children with cancer and their relatives.In contrast to oncology for adults, multiperspective studies that explore BBN experience and specific support needs are rare, especially in Germany. Systematically developed and practically piloted support instruments, which address the specific needs of paediatric oncology, are missing. OBJECTIVE: To systematically design and mature in practice an orientation compass for preparing, delivering and following up on BBN conversations in paediatric oncology-so-called Orientierungskompass zur Übermittlung schwerwiegender Nachrichten in der Kinderonkologie (OKRA). METHODS AND ANALYSIS: OKRA is based on a QUAL-quant mixed study design, comprising two phases. Four groups will contribute (1) experts through personal experience (representatives for children receiving BBN and their parents), (2) medical care providers and representatives of national medical societies, (3) ambulant psychosocial/psychological support providers and (4) researchers. In phase 1, multiperspective knowledge is generated through a participatory group Delphi that involves in-depth interviews, focus group discussions and questionnaires. This process culminates in formulating theses for a high-quality BBN process (output phase 1). In phase 2, based on the theses, a pilot orientation compass is designed. Through iterative cycles with the participatory action research method, this instrument will be piloted in three paediatric oncological settings and consequently optimised. ETHICS AND DISSEMINATION: OKRA was approved on 19 September 2023 by the ethics committee of the Medical Faculty of the University of Cologne (No. 23-1187). After project completion, the OKRA compass will be distributed to multidisciplinary paediatric oncology teams throughout Germany. TRIAL REGISTRATION NUMBER: DRKS00031691.

Care Bermuda, families of the patients with chronic mental disorders in Iran surrounded by psychosocial problems and needs: a qualitative study.

Background: A mental disorder is characterized by a clinically significant impairment of cognition, emotion regulation, or behavior. As a result of the shift in care from medical centers and hospitals to home care, we now see a change in the treatment of patients with chronic mental disorders. Consequently, families have become the main support system in the progressive care of these patients, leading to psychological and social problems. The current qualitative study investigated the social and psychological health needs and problems of family caregivers of patients with chronic mental disorders in Iran's cultural and social context. Methods: This was a content analysis qualitative study. The study was conducted in three psychiatric hospitals in Farabi, Noor, Modares. Purposive sampling was done and continued until data saturation. Semi-structured, face-to-face, and individual interviews were conducted with 49 participants (15 family caregivers of patients with CMD and 34 members of the mental health care team). Data analysis was done using the conventional content analysis method. Results: Eight hundred seventy-five primary codes were obtained, which were classified into 10 subcategories and 3 main categories of 'health challenges of caregiver', 'confused concept of care' and "the need for a coherent support system. Conclusion: In Iranian society, after the patient is discharged from the hospital or care center, family members will change their role to the most important caregivers of these patients. The psychological and social health of these caregivers is destroyed because of the problems they have in providing care for their patients and their needs, which are not met.

Feasibility and acceptability of a nurse-led telehealth intervention (BOLSTER) to support patients with peritoneal carcinomatosis and their caregivers: A pilot randomized clinical trial.

OBJECTIVE: Patients with advanced gynecologic (GYN) and gastrointestinal (GI) cancers frequently develop peritoneal carcinomatosis (PC), which limits prognosis and diminishes health-related quality of life (HRQoL). Palliative procedures may improve PC symptoms, yet patients and caregivers report feeling unprepared to manage ostomies, catheters, and other complex needs. Our objectives were to (1) assess the feasibility of an efficacy trial of a nurse-led telehealth intervention (BOLSTER) for patients with PC and their caregivers; and (2) assess BOLSTER's acceptability, potential to improve patients' HRQoL and self-efficacy, and potential impact on advance care planning (ACP). METHODS: Pilot feasibility RCT. Recently hospitalized adults with advanced GYN and GI cancers, PC, and a new complex care need and their caregivers were randomized 1:1 to BOLSTER or enhanced discharge planning (EDP). We defined feasibility as a ≥ 50% approach-to-consent ratio and acceptability as ≥70% satisfaction with BOLSTER. We assessed patients' HRQoL and self-efficacy at baseline and six weeks, then compared the proportion experiencing meaningful improvements by arm. ACP documentation was identified using natural language processing. RESULTS: We consented 77% of approached patients. In the BOLSTER arm, 91.0% of patients and 100.0% of caregivers were satisfied. Compared to EDP, more patients receiving BOLSTER experienced improvements in HRQoL (68.4% vs. 40.0%) and self-efficacy for managing symptoms (78.9% vs. 35.0%) and treatment (52.9% vs. 42.9%). The BOLSTER arm had more ACP documentation. CONCLUSIONS: BOLSTER is a feasible and acceptable intervention with the potential to improve patients' HRQoL and promote ACP. An efficacy trial comparing BOLSTER to usual care is underway. TRIAL REGISTRATION: ClinicalTrials.gov: NCT03367247; PI: Wright.

Factors associated with changes in the quality of life and family functioning scores of primary caregivers of children and young people with primary brain tumors in Karachi, Pakistan: a prospective cohort study.

BACKGROUND: There are limited data available, particularly in low- and middle-income countries (LMICs), on the long-term quality of life (QoL) and family functioning of primary caregivers of children and young people (CYPs) affected by primary brain tumors (PBTs). This study aimed to assess the factors associated with the mean change in QoL and family functioning scores of primary caregivers of CYP patients with PBTs 12 months posttreatment. METHODS: This prospective cohort study enrolled CYPs aged 5-21 years with newly diagnosed PBTs and their primary caregivers. The study was carried out between November 2020 and July 2023. The primary caregivers of CYPs were recruited from two major tertiary care centers in Karachi, Pakistan. The primary caregivers QoL were assessed by the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. The assessment was undertaken by a psychologist at the time of diagnosis and 12 months posttreatment. The data were analyzed with STATA version 12. RESULTS: Forty-eight CYPs with newly diagnosed PBTs and their primary caregivers (46 mothers and 2 fathers) were enrolled. At 12 months posttreatment, 25 (52%) CYPs and their primary caregivers (mothers) were reassessed, and 23 (48%) were lost to follow-up. On multivariable analysis, a significant decrease in mothers' mean 12-month posttreatment QoL and family functioning scores was associated with CYP having posttreatment seizures (beta= -10.2; 95% CI: -18.4 to -2.0) and with the financial burden associated with the CYP's illness (beta= -0.3; 95% CI: -0.4 to -0.1). However, in those cases where CYP had higher posttreatment quality of life scores (beta = 0.4; 95% CI = 0.1, 0.6) and posttreatment higher verbal intelligence scores (beta = 0.1; 95% CI = 0.01, 0.3), the mothers' QoL and family functioning scores were significantly greater. CONCLUSION: We found a significant decrease in QoL of mothers who had a high financial burden and whose CYP had posttreatment seizures. However, those whose CYPs had higher posttreatment verbal intelligence scores and quality of life scores had significantly greater QoL scores. Identification of the factors that influence primary caregivers QoL has the potential to aid in the development of targeted strategies to alleviate stressors and improve the overall quality of life for primary caregivers and their children who are at high risk.

Prevalence of depression and associated factors among primary caregivers of adult cancer patients, Sidama region Southern Ethiopia: cross-sectional study.

BACKGROUND: The effect of cancer diagnosis affects the psychological well-being of the caregivers of cancer patients and results in a risk of psychiatric morbidity. This study aimed to determine the prevalence and associated factors of depression among primary caregivers of adult cancer patients. OBJECTIVE: This study aimed to assess the magnitude of depression and associated factors among primary caregivers of adult cancer patients. METHODOLOGY: Hospital-based cross-sectional study was conducted among primary caregivers of adult cancer patients. The convenient sampling method used to recruit caregivers of cancer patients. The data was collected by using the Amharic version patient health questionnaire and analyzed by SPSS version 25. Descriptive statistics were used to describe the prevalence of depression and bivariable and multivariable regression models were used to determine the net effect of each independent variable on depression. RESULTS: The overall prevalence of depression among adult cancer patient caregivers was 54.1% (95% CI 47.6, 60.6). Household size < 3; (AOR = 4.5, 95% CI: 1.1-13), Monthly income < 600 (AOR = 2.8, 95% CI:2.5-15.9), Caring hours ≥ 9 (AOR = 9, 95% CI:4-21), Burden level ≥ 20 ;(AOR = 10.7, 95% CI:9.3-11.6) were independent factors of depression among primary caregivers of cancer patients. CONCLUSION: The results of this study showed a higher prevalence of depressed symptoms among primary caregivers of cancer patients. Long caring hours, small household size, low-income level, and higher burden level were independent factors of caregiver depression, indicating the urgent necessity to investigate and deal with it through interdisciplinary approaches.

Understanding caregiver burden and quality of life in Kerala's primary palliative care program: a mixed methods study from caregivers and providers' perspectives.

BACKGROUND: Family caregivers are vital for long-term care for persons with serious health-related suffering in Kerala. Long-term caregiving and ageing may become burdensome and detrimental to patients and caregivers. We compared the caregiver burden and quality-of-life of ageing caregivers with younger caregivers. We also explored the palliative care nurses' perceptions of the family caregivers' issues. METHODS: We did a mixed method study focusing on two groups: (i) three in-depth interviews and a cross-sectional survey among 221 caregivers of palliative care patients in five randomly selected panchayats (most peripheral tier of three-tier local self-government system in India concerned with governance of a village or small town) of Kollam district, Kerala, as part of development and validation of the Achutha Menon Centre Caregiver Burden Inventory; (ii) five in-depth interviews with purposively selected primary palliative care nurses as part of a study on local governments and palliative care. We used a structured interview schedule to collect cross-sectional data on sociodemographic and caregiving-related characteristics, caregiver burden, and health-related quality of life using the EuroQol EQ5D5L and interview guidelines on caregiver issues tailored based on participant type for qualitative interviews. RESULTS: Older caregivers comprised 28.1% of the sample and had significantly poorer health and quality-of-life attributes. More senior caregivers experiencing caregiver burden had the lowest mean scores of 0.877 (Standard deviation (SD 0.066, 95% confidence intervals (CI) 0.854-0.899) followed by younger caregivers with high burden (0.926, SD 0.090, 95% CI 0.907-0.945), older caregivers with low burden (0.935, SD 0.058, 95% CI 0.912-0.958) and younger caregivers with low burden (0.980, SD 0.041, 95% CI 0.970-0.990). Caregivers faced physical, psychological, social, and financial issues, leading to a caregiver burden. The relationships between the palliative care nurses and family caregivers were complex, and nurses perceived caregiver burden, but there were no specific interventions to address this. CONCLUSION: In our study from Kollam, Kerala, three out of ten caregivers of palliative care patients were 60 years of age or older. They had significantly lower health-related quality of life, particularly if they perceived caregiver burden. Despite being recognized by palliative care nurses, caregiver issues were not systematically addressed. Further research and suitable interventions must be developed to target such problems in the palliative care programme in Kerala.

Communication between Caregivers of Adults with Cancer and Healthcare Professionals: a Review of Communication Experiences, Associated Factors, Outcomes, and Interventions.

PURPOSE OF REVIEW: Family/unpaid caregivers play an important role in cancer care. This review aims to summarize caregiver communication experiences with healthcare professionals (HCPs). RECENT FINDINGS: The Caregiver-Centered Communication model defines five core functions that HCPs should achieve when interacting with caregivers, including fostering relationships, exchanging information, recognizing and responding to caregiver emotions, aiding in decision making, and assisting in patient care management. The literature shows that caregivers have both positive and negative communication experiences with HCPs with respect to these five core functions. Factors at the caregiver (e.g., demographic characteristics, information sources, caregiving duration, health status), patient (e.g., demographic and clinical characteristics), and HCP levels (e.g., time constraints in clinical settings, communication skills) are associated with caregiver-HCP communication quality. Studies further show that these communication experiences may affect caregiver outcomes, including quality of life, mental health, resilience, and satisfaction with cancer care. Moreover, poor quality caregiver-HCP communication is associated with patient readmission to the hospital and unmet care needs. Interventions for caregivers or patient-caregiver dyads have been shown to enhance caregiver confidence and increase their engagement in communication with HCPs. Interventions for HCPs have shown efficacy in improving their communication skills, particularly in involving caregivers in decision-making discussions. Given time constraints during medical visits, we suggest conducting a caregiver assessment by navigators prior to visits to understand their communication needs. Additionally, reimbursing HCPs for time spent communicating with caregivers during visits could be beneficial. More research is needed to better understand how to enhance caregiver-HCP communication quality.

"They don't care to study it": Trust, race, and health care experiences among patient-caregiver dyads with multiple myeloma.

BACKGROUND: Medical mistrust, rooted in unethical research, is a barrier to cancer-related health care for Black/African American (AA) persons. Understanding trust, mistrust, and health care experiences is crucial, especially in multiple myeloma (MM), which disproportionately burdens Black/AA persons in incidence and survival. STUDY PURPOSE: This study qualitatively examines the experiences of Black/AA and White dyads (patient with MM and adult caregiver) to gain insights into these phenomena. METHODS: From November 2021 to April 2022, we recruited 21 dyads from the UNC Lineberger Comprehensive Cancer Center. Participants completed a sociodemographic survey and a 60-90 min semi-structured interview. We used ATLAS.ti v9 for project management and to facilitate data analysis using the Sort and Sift, Think and Shift approach (ResearchTalk Inc). RESULTS: We interviewed 21 racially concordant dyads (11 Black/AA, 10 White) with mean patient ages of 70 (Black/AA) and 72 (White) at enrollment. Both Black/AA and White caregivers had a mean enrollment age of 68. The mean duration from MM diagnosis to enrollment for all patients was 5.5 years. Four key themes emerged: (1) knowledge and trust, (2) heightened emotions and discomfort, (3) differing mental constructs of health care experiences, and (4) mitigating mistrust, which varied by self-identified race. Black/AA participants had greater knowledge of historical events like the U.S. Public Health Service Untreated Syphilis Study at Tuskegee and carried the emotional burden longer. They also emphasized self-learning and self-guided research about MM for informed medical decision-making. Both Black/AA and White dyads emphasized the pivotal role of patient-provider relationships and effective communication in fostering trust and addressing concerns. CONCLUSION: Our study offers contextual insights into the enduring challenges of medical mistrust, particularly within the Black/AA community, and its implications for patients and caregivers accessing and receiving MM-related care. Future studies should leverage these insights to guide the development of multilevel interventions addressing medical mistrust within the Black/AA community.

Adapting a dyadic exercise program to be culturally relevant for Hispanic men with prostate cancer using community engagement studio: a brief report.

Background: Cancer disparities exist for Hispanic men with prostate cancer and their caregivers that could be reduced through exercise. Exercising Together© is a six-month, evidence-based dyadic resistance training program that promotes teamwork between prostate cancer survivors and their spouses to improve physical, mental, and relational health outcomes. The purpose of this study was to elicit feedback and recommendations from stakeholders on the Exercising Together© intervention to inform the cultural adaptation of this program for Hispanic men with prostate cancer. Methods: We conducted a virtual Community Engagement Studio (V-CES) with community expert stakeholders representing the Hispanic and cancer care communities in Southern Arizona. The V-CES process included orientation, presentation of the research, guided discussion, and evaluation. The V-CES was audio recorded, transcribed, and rapidly analyzed to identify actionable feedback and contextual adaptations. Results: Nine stakeholders (6/9 male; 5/9 Hispanic) completed all V-CES activities. Through stakeholder engagement and feedback from the V-CES, adaptations to the original Exercising Together© intervention included: (1) inclusion of the cancer survivor's identified caregiver, who may not be a spouse; (2) availability in English and Spanish; (3) shortening the intervention to 3 months; (4) remote delivery of the intervention; and (5) incorporation of low burden procedures. Conclusion: Findings from our V-CES informed the adaptation of a culturally relevant dyadic progressive resistance training program for Hispanic men with prostate cancer and their caregivers.

Changing practice to improve quality of life in glioma.

As treatment for glioma advances, with an attendant improvement in length of patient survival, the quality of that survival has rightly become an increasingly important patient-centered metric, and health-related quality of life (HRQOL) an important outcome measure. HRQOL is a self-assessed, multidimensional concept encompassing the physical, emotional, and social components of quality of life associated with illness and its treatment. Neurosurgeons caring for patients with gliomas should be aware of the latest research on HRQOL to understand mechanisms by which it can be improved. Neurosurgical outcomes related to surgical complications and neurological deficits can be important determinants of HRQOL and are well understood by neurosurgeons. However, an understanding of more general or global determinants of HRQOL not commonly addressed in the clinic, and implementation of the attendant evidence-based interventions to address them, would be transformative. The authors explore HRQOL determinants related to patient-, social-, tumor-, and treatment-related factors, with a particular emphasis on the strongest determinants, fatigue, sleep disturbance, anxiety, depression, neurocognitive dysfunction, caregiver distress, and end-of-life concerns. Evidence-based interventions are reviewed, including fatigue management, cognitive rehabilitation, insomnia interventions exercise, caregiver training, palliative care, and an overall multidisciplinary team approach. Lastly, features of a program are outlined that would embed HRQOL in neurosurgical care to the benefit of both patients and staff.

A chain mediation model reveals the association between family sense of coherence and quality of life in caregivers of advanced cancer patients.

Caregivers of advanced cancer patients face challenges impacting their quality of life (QoL). While evidence suggests that family sense of coherence (FSOC) can enhance individual psychological well-being and reduce distress symptoms, the precise mechanism through which FSOC improves caregivers' QoL remains unclear. This study aimed to explore the relationships among FSOC, psychological resilience, psychological distress, and QoL in primary caregivers of advanced cancer patients. A cross-sectional observational study was undertaken from June 2020 to March 2021 across five tertiary hospitals in China. Instruments included a general characteristic questionnaire, the Family Sense of Coherence Scale, the Patient Health Questionnaire-4, the 10-item Connor-Davidson Resilience Scale, and the 8-item SF-8 health survey. Pearson's correlation and chain mediation analyses were performed using IBM SPSS (version 21) and PROCESS macro (version 3.4). Out of 290 valid questionnaires, results demonstrated that FSOC directly and positively influences caregivers' QoL. Psychological distress partially mediated the FSOC-QoL association, with paths "FSOC-psychological distress-QoL" and "FSOC-psychological resilience-psychological distress-QoL" contributing 43.08% and 6.72% of the total effect, respectively. Furthermore, this study distinguished physical and mental aspects of QoL, confirming both conform to the chain mediation model. FSOC impacts caregivers' QoL directly and indirectly through the mediation of psychological distress and the chain mediation effect of "psychological resilience-psychological distress". These insights enhance our understanding of the complex interplay between FSOC and QoL, underscoring the potential benefits of bolstering FSOC to strengthen caregiver resilience, alleviate distress, and ultimately elevate their QoL.

Práticas de cuidado e necessidades de saúde de homens em atenção domiciliar / Care practices and health needs of men in home care / Prácticas de cuidado y necesidades de salud de los hombres en el cuidado domiciliario

Objetivo: Analisar as práticas de cuidado desenvolvidas para atender às necessidades de saúde de homens em atenção domiciliar. Métodos: Pesquisa observacional e qualitativa, realizada com 34 cuidadores e 24 homens assistidos pelo serviço de atenção domiciliar do município de João Pessoa. A coleta de dados foi realizada por meio de um roteiro com variáveis sociodemográficas e perguntas abertas. A Análise Crítica do Discurso foi utilizada como método de análise, com destaque para os significados representacional e identificacional dos discursos. Resultados: As práticas de cuidado e necessidades de saúde foram apontadas com base na relação hegemônica entre os atores do cuidado, associação do cuidado ao processo de trabalho informal, atuação da família, da atividade corresponsabilizada, e prática da autonomia e autocuidado. Conclusão: Evidenciou-se um cuidado multifacetado e executado por diversos atores com suporte de equipes multiprofissionais de atenção domiciliar. (AU)

Objective: To analyze the care practices developed to meet the health needs of men in home care. Methods: Observational and qualitative research, carried out with 34 caregivers and 24 men assisted by the home care service in the city of João Pessoa. Data collection was performed through a script with sociodemographic variables and open questions. Critical Discourse Analysis was used as a method of analysis, with emphasis on the representational and identificational meanings of the discourses. The research was approved according to the opinion number 1.829.326. Results: Care practices and health needs were identified based on the hegemonic relationship between the care actors, association of care with the informal work process, family activities and co-responsibility activities, and the practice of autonomy and self-care. Conclusion: There was evidence of a multifaceted care performed by different subjects with the support of multidisciplinary home care teams. (AU)

Objetivo: Analizar las prácticas asistenciales desarrolladas para satisfacer las necesidades de salud de los hombres en la atención domiciliaria. Métodos: Investigación observacional y cualitativa, realizada con 34 cuidadores y 24 hombres asistidos por el servicio de atención domiciliaria en la ciudad de João Pessoa. La recolección de datos se realizó mediante un guión con variables sociodemográficas y preguntas abiertas. Se utilizó el Análisis Crítico del Discurso como método de análisis, con énfasis en los significados representativos e identificativos de los discursos. La investigación fue aprobada de acuerdo al dictamen número 1.829.326. Resultados: Se identificaron prácticas de cuidado y necesidades de salud a partir de la relación hegemónica entre los actores del cuidado, la asociación del cuidado con el proceso de trabajo informal, las actividades familiares y de corresponsabilidad, y la práctica de la autonomía y el autocuidado. Conclusión: Se evidenció una atención multifacética realizada por diferentes sujetos con el apoyo de equipos multidisciplinares de atención domiciliaria. (AU)

Impact of a comprehensive rehabilitation palliative care program on the quality of life of patients with terminal cancer and their informal caregivers: a quasi-experimental study.

BACKGROUND: Palliative care schemes, which include pain management, symptom control, psychosocial support and rehabilitation, aim to boost patients' quality of life, ease the burden and anxiety of informal caregivers, and ultimately provide a comprehensive approach to enhance well-being during this challenging and sensitive period. This study aims to evaluate the impact of a comprehensive rehabilitation palliative care program on the quality of life of patients with terminal cancer and their informal caregivers. METHODS: This quasi-experimental study, conducted from August 2023 to January 2024 at outpatient clinics affiliated with the Oncology Center at Mansoura University, Egypt, focused on cancer patients and their caregivers in the palliative care department. Employing pre- and post-test phases, data were gathered using a questionnaire, EORTC QLQ C30, Hospital Anxiety and Depression Scale, Short Form Health Survey, Caregiver Burden Inventory, and Beck Anxiety Inventory. The investigation evaluated a 16-week rehabilitation program comprising exercise, psychoeducation, individual counselling, and spiritual support. Exercises, led by a physiotherapist, targeted fatigue and stress through tailored aerobic and resistance training. Psychoeducation sessions aimed to bolster coping abilities, covering fatigue management and nutrition. Trained counsellors addressed spiritual and existential concerns. Personal advisory sessions were available for individual support. Caregivers received education on rehabilitation and palliative care protocols, ensuring comprehensive patient care. RESULTS: The mean age for cancer patients was 65.79 ± 13.85. In contrast, the mean age for primary carers was 42.05 ± 11.15. The QOL for cancer patients during the pre-test phase was 77.8 ± 7.16 and rose to 87.34 ± 14.56 during the post-test phase. Additionally, the total anxiety level of patients before the rehabilitation palliative care program was conducted was 15.45 ± 3.05 compared to 6.12 ± 3.21 after the post test phase. Furthermore, the total depression levels of the patients during the pre-test phase were 20.89 ± 9.21. However, after implementing the rehabilitation palliative care program, it decreased to 15.5 ± 6.86. In regards to the total quality of life of informal caregivers, it was measured at 67.28 ± 32.09 before conducting the program. Nevertheless, it increased to 25.95 ± 40.29 after conducting it. Additionally, the total Caregiver Burden Inventory before implementing the program was 37.45 ± 25.7, and it decreased to 29.36 ± 16.4 after conducting it. Additionally, the total score on the Beck Anxiety Inventory decreased from 45.7 ± 4.3 during the initial testing phase to 17.35 ± 23.67. CONCLUSION: The program for rehabilitation palliative care successfully achieved its goals by enhancing the overall quality of life for cancer patients and their caregivers. Additionally, it reduced the anxiety and depression levels among the patients, as well as the anxiety and caregiver burden among the caregivers. Continue research into the effectiveness of rehabilitation palliative care programs to identify best practices, improve existing programs, and expand access to these services.

The mental health and traumatic experiences of mothers of children with 22q11DS.

Background: 22q11 Deletion Syndrome (22q11DS) is the most common microdeletion syndrome with broad phenotypic variability, leading to significant morbidity and some mortality. The varied health problems associated with 22q11DS and the evolving phenotype (both medical and developmental/behavioural) across the lifespan can strongly impact the mental health of patients as well as their caregivers. Like caregivers of children with other chronic diseases, caregivers of children with 22q11DS may experience an increased risk of traumatisation and mental health symptoms.Objective: The study's primary objective was to assess the frequency of traumatic experiences and mental health symptoms among mothers of children with 22q11DS. The secondary objective was to compare their traumatic experiences to those of mothers of children with other neurodevelopmental disorders (NDDs).Method: A total of 71 mothers of children diagnosed with 22q11DS completed an online survey about their mental health symptoms and traumatic experiences. Descriptive statistics were used to summarise the prevalence of their mental health symptoms and traumatic experiences. Logistic regression models were run to compare the traumatic experiences of mothers of children with 22q11DS to those of 335 mothers of children with other neurodevelopmental disorders (NDDs).Results: Many mothers of children with 22q11DS experienced clinically significant mental health symptoms, including depression (39%), anxiety (25%), and post-traumatic stress disorder (PTSD) symptoms (30%). The types of traumatic events experienced by mothers of children with 22q11DS differed from those of mothers of children with other NDDs as they were more likely to observe their child undergoing a medical procedure, a life-threatening surgery, or have been with their child in the intensive care unit.Conclusion: 22q11DS caregivers are likely to require mental health support and trauma-informed care, tailored to the specific needs of this population as they experience different kinds of traumatic events compared to caregivers of children with other NDDS.

Mothers of children with 22q11DS experience clinically significant levels of depression, anxiety, and PTSD.Mothers of children with 22q11DS experience many and diverse trauma particularly related to medical interventions of their child.The types of traumatic events experienced by mothers of children with 22q11DS are different from those of the mothers of children with other neurodevelopmental disorders.

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.

Talking with clinicians about online cancer information: a survey of cancer patients and surrogate information seekers.

OBJECTIVES: To describe patients' and surrogate information seekers' experiences talking to clinicians about online cancer information. To assess the impact of clinicians telling patients or surrogate seekers not to search for information online. DESIGN: Cross-sectional survey. SAMPLE: A total of 282 participants, including 185 individuals with cancer and 97 surrogate seekers. METHODS: Individuals were recruited through a broad consent registry and completed a 20-min survey. FINDINGS: Cancer patients and surrogate seekers did not differ significantly in their experiences talking with clinicians about online cancer information. Nearly all patients and surrogate seekers who were told by a clinician not to go online for cancer information did so anyway. IMPLICATIONS: Interventions for improving cancer information seeking and communication with clinicians should target both patients and surrogate seekers. Clinicians should be educated about effective ways to communicate with patients and surrogate seekers about online cancer information.

Pediatric Cancer Communication on Twitter: Natural Language Processing and Qualitative Content Analysis.

BACKGROUND: During the COVID-19 pandemic, Twitter (recently rebranded as "X") was the most widely used social media platform with over 2 million cancer-related tweets. The increasing use of social media among patients and family members, providers, and organizations has allowed for novel methods of studying cancer communication. OBJECTIVE: This study aimed to examine pediatric cancer-related tweets to capture the experiences of patients and survivors of cancer, their caregivers, medical providers, and other stakeholders. We assessed the public sentiment and content of tweets related to pediatric cancer over a time period representative of the COVID-19 pandemic. METHODS: All English-language tweets related to pediatric cancer posted from December 11, 2019, to May 7, 2022, globally, were obtained using the Twitter application programming interface. Sentiment analyses were computed based on Bing, AFINN, and NRC lexicons. We conducted a supplemental nonlexicon-based sentiment analysis with ChatGPT (version 3.0) to validate our findings with a random subset of 150 tweets. We conducted a qualitative content analysis to manually code the content of a random subset of 800 tweets. RESULTS: A total of 161,135 unique tweets related to pediatric cancer were identified. Sentiment analyses showed that there were more positive words than negative words. Via the Bing lexicon, the most common positive words were support, love, amazing, heaven, and happy, and the most common negative words were grief, risk, hard, abuse, and miss. Via the NRC lexicon, most tweets were categorized under sentiment types of positive, trust, and joy. Overall positive sentiment was consistent across lexicons and confirmed with supplemental ChatGPT (version 3.0) analysis. Percent agreement between raters for qualitative coding was 91%, and the top 10 codes were awareness, personal experiences, research, caregiver experiences, patient experiences, policy and the law, treatment, end of life, pharmaceuticals and drugs, and survivorship. Qualitative content analysis showed that Twitter users commonly used the social media platform to promote public awareness of pediatric cancer and to share personal experiences with pediatric cancer from the perspective of patients or survivors and their caregivers. Twitter was frequently used for health knowledge dissemination of research findings and federal policies that support treatment and affordable medical care. CONCLUSIONS: Twitter may serve as an effective means for researchers to examine pediatric cancer communication and public sentiment around the globe. Despite the public mental health crisis during the COVID-19 pandemic, overall sentiments of pediatric cancer-related tweets were positive. Content of pediatric cancer tweets focused on health and treatment information, social support, and raising awareness of pediatric cancer.