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.

Expressed Emotion in Families of Children with Neurodevelopmental Disorders: A Mixed-Method Approach.

Background: Family interaction plays a pivotal role in the overall well-being of each member of a family unit. It is foreseeable that a family caring for an individual with a mental or physical health condition could experience negative family interactions for various reasons. Expressed emotion refers to the family environment based on the relatives' interaction with the individual diagnosed with a specific illness. Expressed emotion in the families of a person with any form of mental condition could pose potential psychological distress and burden to family members, notably the primary caregivers. Purpose: The current study intends to explore the expressed emotion of the primary caregivers toward children with neurodevelopmental disorders (NDDs). The association between expressed emotion, stress experienced by the caregiver, and the self-sufficiency of the child diagnosed with neurodevelopmental disorders was examined. Methods: The Five-Minute Speech Sample (FMSS), Kingston Caregivers' Stress Scale (KCSS), and Waisman Activities of Daily Living (WADL) were used to assess expressed emotion, stress, and a child's self-sufficiency, respectively. The snowball sampling technique was adopted, and data were collected from 35 primary caregivers through telephonic interviews. A mixed-method research design was adopted, and the data were analyzed qualitatively and quantitatively. Results: The findings reveal that there is a significant association between expressed emotion and caregivers' stress, expressed emotion, and the child's self-sufficiency and a significant relationship between the caregivers' stress and the child's self-sufficiency. The qualitative analysis suggests the influence of factors such as future concerns, family factors, and relationship strains contribute to expressed emotion. Conclusion: It can be concluded that those primary caregivers who reported extreme caregivers' stress and low self-sufficiency in their child exhibited high negative expressed emotion and diverse individual and systemic factors influenced the display of high expressed emotion within the family.

Development and validation of a job aid: Tool to reduce infections in home-based stroke.

BACKGROUND:  Stroke patients who are discharged from hospital because of limited access to rehabilitation facilities are cared for by lay caregivers who at times have limited knowledge of infection prevention and control (IPC). User-friendly educational interventions can help bridge this knowledge gap and enhance safe care of these persons. AIM:  To describe the development and validation of educational interventions for home-based stroke patients. The validation process enhanced the reliability and validity of the job aid resulting in standardised quality patient care of stroke patients. SETTING:  Mutasa district, Manicaland province, Zimbabwe. METHODS:  The systematic six steps in quality intervention development guided the development of the job aid. Graphic designers assisted with development of diagrams and annotations. A purposively selected eight-member panel of IPC expert reviewers was invited to validate the job aid using a standardised validation tool. RESULTS:  The panel agreed that the job aid's title, target group and media of instruction were adequately explained, and the background could be easily understood during practice. The content was approved with some modifications on the description of instructions to caregivers. Seven reviewers agreed that the materials used ensured understandability, acceptability, practicability and usability of the educational interventions by caregivers, and one reviewer was neutral in commenting effectiveness of the job aid. CONCLUSION:  The developed job aid addressed knowledge barriers in IPC for caregivers, and the reviewers confirmed that the developed job aid was adequate for effective use by lay home-based caregivers.Contribution: Utilisation of this intervention standardises patient care practices.

Caring for People Living With Dementia in Saudi Arabia: The Perspective of Nurses as Primary Caregivers.

Dementia is a progressive condition and an umbrella term used to describe a set of symptoms that affects many older adults. Older adults living with dementia often experience social stigma, which can impact their quality of life. Most people with dementia need the assistance of a caregiver in order to enhance their health. The present study seeks to explore the perspective of nurses as the primary caregivers of people living with dementia in Saudi Arabia, focusing on the challenges faced by nurses and their reactions to these challenges. A descriptive qualitative approach using semi-structured interviews with 10 nurses with experience caring for people living with dementia from 2 hospitals in Jeddah, Saudi Arabia. Using thematic analysis, 4 main themes were identified: (1) types of support, (2) challenges when caring for people living with dementia, (3) society's views on people living with dementia, and (4) nurses' perceptions of dementia. The nurses stated that people living with dementia do not receive sufficient support from their families. Most participants believed that public awareness about dementia is insufficient. Increased efforts to raise public awareness about dementia could include harnessing social norms around family structure and respect for elders to improve care provided to people living with dementia.

Parental positive affect and negative affect in same- and different-sex parent families: no associations with parental gender and caregiving role.

Positive and negative parental affect influence developing parent-child attachment relationships, especially during infancy as well as children's social-emotional, academic, and behavioral functioning later in life. Increasingly, because both mothers and fathers can play central caregiving roles, the parenting qualities of both parents demand consideration. Therefore, this study investigated whether parental gender and caregiving role were associated with mothers' and fathers' positive affect and negative affect during interactions with their 4-month-old firstborn infant, while determining whether parenting stress, infant temperament, having a singleton/twin, and living in the Netherlands, France, or the United Kingdom were related to parental positive affect and negative affect. In all, 135 different-sex, same-sex male, and same-sex female couples (113 fathers and 157 mothers, comprising 147 primary, and 123 secondary caregivers) who conceived through artificial reproductive techniques were studied. The couples were videorecorded at home while in feeding, cleaning, and playing contexts to assess the levels of positive and negative parental affect. In addition, the couples completed questionnaires about their caregiving role, parenting stress, and the infants' temperament. Mixed linear models indicated that the levels of positive and negative parental affect toward the infant in all contexts were not related to parental gender, caregiving role, the interaction between parental gender and caregiving role, parenting stress, infant temperament, or singleton/twin status. However, the target parental behaviors were related to the country of origin, suggesting differences among Dutch, French, and British parents. Overall, we found no evidence that gender or caregiving roles were associated with the levels of positive and negative affect shown by the parents.

Family physicians' preferences for education to support family caregivers: a sequential mixed methods study.

BACKGROUND: One in four Canadians is a family caregiver. Family caregivers (carers, care-partners) are relatives or chosen family, friends, or neighbors who provide 75 to 90% of the care for people with physical or mental illness, disabilities, or frailty living in community homes and assist with 15 to 30% of the care in congregate care. However, a recent (2022) Statistics Canada population health study reports 44% of family caregivers are distressed. Family physicians and primary care teams are well-positioned to support family caregivers; yet, family caregiver needs assessments tend to be ad hoc and their most common needs remain unmet. Research recommends training healthcare professionals to enhance their knowledge and skills to support family caregivers. METHODS: The objective of this sequential mixed methods research, a survey followed by qualitative interviews, was to explore family physicians' desire and preferences for education about supporting family caregivers. 85 family physicians completed the online survey and eight took part in the interviews. Results from the survey and interviews were compared, contrasted, and interpreted together. RESULTS: Primary care physicians expressed a desire to be better equipped to assess and support FCGs' needs. Even though most physicians (61%) were very/confident about addressing family caregivers' needs, 72% were highly/interested in education to support family caregivers of their patients. Topics with the most interest were assessing family caregivers needs in an organized way, assisting family caregivers to access resources, and address system and practice barriers to support family caregivers. The overarching theme running through the interviews was physicians hope for education to help change the patient-focused culture to inclusion of FCGs. The three themes reflect physicians' conviction about including family caregivers in patient care: We need to take care of their caregivers, Practice and system barriers thwart including family caregivers, and Practical education might help. CONCLUSIONS: This study of family physicians' preferences for education to support family caregivers will inform the development of education about supporting family caregivers for family physicians and trainees.

Courtesy stigma among primary caregivers of children with autism spectrum disorder in eastern China.

Introduction: The experience and perception of stigma is a common problem among primary caregivers of children with autism spectrum disorder (ASD), and has a profound adverse impact on primary caregivers and children with ASD; however, few studies have explored courtesy stigma among primary caregivers of children with ASD in the Chinese context. The aim of this study was to explore the status of courtesy stigma among primary caregivers of children with ASD in Lianyungang, Jiangsu Province, Eastern China, and to conduct in-depth analysis of its predictors from multiple perspectives. Methods: An institution-based multi-center cross-sectional survey was conducted in the rehabilitation department of a large specialized hospital and 10 rehabilitation centers for children with special needs in Lianyungang, Jiangsu Province, Eastern China, from October 2022 to February 2023. A structured questionnaire to assess child-related factors, primary caregiver-related factors, courtesy stigma, general self-efficacy, and social support, was used to collect data. Predictors of courtesy stigma among primary caregivers of children with ASD were identified by linear regression. Results: A total of 428 primary caregivers of children with ASD were recruited. The mean ± standard deviation (SD) score for courtesy stigma was 7.49 ± 4.13. Multiple linear regression analysis revealed that primary caregivers of children with ASD who were not too satisfied with their current marital status (ß = 1.21, 95% CI: 0.34-2.08, p < 0.05) were more likely to have a high courtesy stigma; however, significantly lower courtesy stigma was observed in primary caregivers of children with ASD who were not picky eaters (ß = -1.33, 95% CI: -2.08 - -0.58, p < 0.05), and who reported low level challenge in caring for children with ASD (ß = -1.16, 95% CI: -2.20 - -0.12, p < 0.05), good general self-efficacy (ß = -0.16, 95% CI: -0.25 - -0.06, p < 0.05), and good social support (ß = -0.04, 95% CI: -0.08 - -0.01, p < 0.05). Conclusion: There is a high level of courtesy stigma among primary caregivers of children with ASD in eastern China, and it is affected by numerous factors. More resources should be directed to groups that are more likely to experience stigma.

Relationship between primary caregivers' social support function, anxiety, and depression after interventional therapy for acute myocardial infarction patients.

BACKGROUND: An acute myocardial infarction (AMI) is often treated with direct coronary intervention and requires home-based rehabilitation. Caregivers of patients with AMI need adequate social support to maintain high-quality care; however, their social support function is low, and relevant indicators for intervention must be identified. AIM: To analyze the correlation between social support for primary caregivers, their anxiety, and depression, when caring for patients with AMI after interventional therapy. METHODS: Using convenience sampling, we selected 300 primary caregivers of patients with AMI who had undergone interventional therapy. The Social Support Rating Scale (SSRS), Self-Rating Anxiety Scale (SAS), and Self-Rating Depression Scale (SDS) were used to assess the primary caregivers. A Pearson's correlation analysis was used to analyze the correlations between the SSRS, SAS, and SDS, and a multiple logistic regression analysis was used to analyze the factors influencing the low social support function of primary caregivers. The receiver operating characteristic curve and area under the curve (AUC) were used to evaluate the pre-dictive ability of the SAS and SDS for low social support function in primary caregivers. RESULTS: Considering the norm among Chinese people, AMI caregivers' objective support, subjective support, support utilization, and SSRS scores were lower, while their SAS and SDS scores were higher. The SSRS scores of female caregivers were higher than those of the male caregivers (t = 2.123, P = 0.035). The Pearson correlation analysis showed that objective support, subjective support, support utilization, and SSRS total scores were significantly correlated with both SAS (r = -0.414, -0.460, -0.416, -0.535) and SDS scores (r = -0.463, -0.379, -0.349, -0.472). Among the 300 AMI caregivers, 56 cases (18.67%) had a low level of support function (SSRS ≤ 22 points). Logistic regression model analysis showed that SAS and SDS were independent risk factors for low social support function of AMI caregivers, regardless of adjustment for other variables (P < 0.05). SAS and SDS predicted that the AUC of AMI caregivers with low support function was 0.84, sensitivity was 67.9 and 71.4, and specificity was 84.0 and 70.9, respectively. CONCLUSION: The social support function of the primary caregiver of patients with AMI after interventional therapy was lower and negatively correlated with anxiety and depression in the primary caregiver.

Vulnerability in women primary caregivers of children in palliative care due to intimate partner violence in a pediatric hospital in Mexico / Vulnerabilidad en mujeres cuidadoras primarias de menores en cuidados paliativos debida a violencia de pareja en un hospital de niños en México

Abstract Background: Women are the primary caregivers of children in palliative care. Research has shown that the presence of intimate partner violence at home exacerbates the vulnerability of the caregiver. Current statistics indicate a high prevalence of violence in Mexico present in the intersectionality between intimate partner violence and the role of the primary caregiver. This study aimed to describe the frequency of intimate partner violence among primary palliative caregivers at the Hospital Infantil de México Federico Gómez. Methods: We conducted a cross-sectional and prospective study with convenience sampling; no sample calculation was performed. All female primary caregivers of children in the palliative care unit were invited to participate. The Scale of Violence and Index of Severity of Violence was used as the measuring instrument. Results: One hundred women participated in the study by submitting their survey in a designated mailbox. No sociodemographic data or patient diagnoses were collected. The frequency of intimate partner violence was 28%, of which 16% were considered severe cases. Women reported psychological violence (36%), sexual violence (23%), and physical violence (22%). Conclusions: Almost one-third of female primary caregivers of pediatric patients at the Hospital Infantil de México Federico Gómez have been victims of some form of violence by current partners. This study highlights a previously unreported problem and opens the door for studies to correlate intimate partner violence among primary caregivers and the quality of life of children in palliative care.

Resumen Introducción: Las mujeres son las principales cuidadoras de los niños en cuidados paliativos. Las investigaciones han demostrado que la violencia de pareja en el hogar exacerba la vulnerabilidad del cuidador. Las estadísticas actuales sobre violencia en México indican una alta prevalencia presente en la interseccionalidad entre la violencia de pareja y el rol de cuidador principal. El objetivo de este estudio fue describir la frecuencia de violencia de pareja entre los cuidadores primarios del Hospital Infantil de México Federico Gómez (HIMFG). Métodos: Se llevó a cabo un estudio transversal y prospectivo con muestreo por conveniencia; no se realizó ningún cálculo de muestra. Se invitó a participar a todas las mujeres cuidadoras primarias de niños en la Unidad de Cuidados Paliativos. Se utilizó como instrumento la Escala de Violencia e Índice de Severidad de la Violencia. Resultados: Cien mujeres participaron en el estudio; no se recogieron sus datos sociodemográficos ni diagnósticos. La frecuencia de violencia de pareja fue del 28%: 16% se consideraron casos graves. Las mujeres reportaron violencia psicológica (36%), violencia sexual (23%) y violencia física (22%). Conclusiones: Alrededor de la tercera parte de las mujeres cuidadoras principales de pacientes pediátricos del HIMFG han sido víctimas de algún tipo de violencia por parte de sus parejas actuales. Este estudio destaca un problema no informado previamente y abre la puerta a estudios para correlacionar la violencia de pareja íntima entre los cuidadores primarios y la calidad de vida de los niños en cuidados paliativos.

Vulnerability in women primary caregivers of children in palliative care due to intimate partner violence in a pediatric hospital in Mexico.

BACKGROUND: Women are the primary caregivers of children in palliative care. Research has shown that the presence of intimate partner violence at home exacerbates the vulnerability of the caregiver. Current statistics indicate a high prevalence of violence in Mexico present in the intersectionality between intimate partner violence and the role of the primary caregiver. This study aimed to describe the frequency of intimate partner violence among primary palliative caregivers at the Hospital Infantil de México Federico Gómez. METHODS: We conducted a cross-sectional and prospective study with convenience sampling; no sample calculation was performed. All female primary caregivers of children in the palliative care unit were invited to participate. The Scale of Violence and Index of Severity of Violence was used as the measuring instrument. RESULTS: One hundred women participated in the study by submitting their survey in a designated mailbox. No sociodemographic data or patient diagnoses were collected. The frequency of intimate partner violence was 28%, of which 16% were considered severe cases. Women reported psychological violence (36%), sexual violence (23%), and physical violence (22%). CONCLUSIONS: Almost one-third of female primary caregivers of pediatric patients at the Hospital Infantil de México Federico Gómez have been victims of some form of violence by current partners. This study highlights a previously unreported problem and opens the door for studies to correlate intimate partner violence among primary caregivers and the quality of life of children in palliative care.

INTRODUCCIÓN: Las mujeres son las principales cuidadoras de los niños en cuidados paliativos. Las investigaciones han demostrado que la violencia de pareja en el hogar exacerba la vulnerabilidad del cuidador. Las estadísticas actuales sobre violencia en México indican una alta prevalencia presente en la interseccionalidad entre la violencia de pareja y el rol de cuidador principal. El objetivo de este estudio fue describir la frecuencia de violencia de pareja entre los cuidadores primarios del Hospital Infantil de México Federico Gómez (HIMFG). MÉTODOS: Se llevó a cabo un estudio transversal y prospectivo con muestreo por conveniencia; no se realizó ningún cálculo de muestra. Se invitó a participar a todas las mujeres cuidadoras primarias de niños en la Unidad de Cuidados Paliativos. Se utilizó como instrumento la Escala de Violencia e Índice de Severidad de la Violencia. RESULTADOS: Cien mujeres participaron en el estudio; no se recogieron sus datos sociodemográficos ni diagnósticos. La frecuencia de violencia de pareja fue del 28%: 16% se consideraron casos graves. Las mujeres reportaron violencia psicológica (36%), violencia sexual (23%) y violencia física (22%). CONCLUSIONES: Alrededor de la tercera parte de las mujeres cuidadoras principales de pacientes pediátricos del HIMFG han sido víctimas de algún tipo de violencia por parte de sus parejas actuales. Este estudio destaca un problema no informado previamente y abre la puerta a estudios para correlacionar la violencia de pareja íntima entre los cuidadores primarios y la calidad de vida de los niños en cuidados paliativos.

Concept analysis: Community-based postnatal care.

BACKGROUND:  Community-based postnatal care is a valuable resource in the provision of maternal and neonatal care, specifically outside the hospital environment. However, its application in maternal and neonatal care is not clearly documented in relation to the rendering of services by primary caregivers. OBJECTIVES:  This study clarifies the concept of 'community-based postnatal care' by using the concept analysis method. METHOD:  To analyse the concept, relevant literatures were reviewed and analysed using the Walker and Avant method, namely, selecting a concept, determining the purpose of analysis, identifying all uses of the concept, defining attributes, identifying a model case, identifying borderline, related and contrary cases, identifying antecedents and consequences and identifying the empirical referents. Characteristics that repeatedly appeared throughout the literature were noted and categorised. RESULTS:  It was established from the concept analysis that 'community-based postnatal care' was complex and experienced ethnically. The analysis included that primary caregiver participation was based on home-levelled-skilled care, community participation and mobilisation, linkages of health services and community stakeholders. The attributes were influenced by antecedents and consequences. CONCLUSION:  The empirical referents of community based can be integrated within the midwifery guidelines to measure the concept. When concepts are understood, self-care on early detection, early management and referral during early postnatal care will be enhanced.Contribution: The results of this study will foster independence, confidence and a respectful relationship between primary caregivers and the health care facility staff. The results are expected to guide future research and enhance community-based postnatal care in midwifery practice.

Características de las lesiones no intencionales domésticas en niños entre 5 y 10 años que residen en barrios de Corrientes Capital, 2022 / Caracteristics of non-intencional domestic injuries in childrenbetween 5 and 10 years old who live in neighborhoods of Corrientes Capital, 2022

Objetivo: caracterizar las lesiones no intencionales domésticas en el hogar en niños de 5 a 10 años en dos barrios de Corrientes, Capital en el primer semestre del año 2022. Metodología: estudio observacional, descriptivo, transversal. Muestreo de tipo consecutivo. La muestra total fue de 185 encuestas aplicadas a los cuidadores principales en un período no mayor a 6 meses. Variables: edad del cuidador; sexo del cuidador; nivel educativo del cuidador principal; edad y sexo de niños/as; lesión no intencional y su frecuencia; circunstancias en que ocurren las lesiones no intencionales y modo de actuación ante el hecho de lesión no intencional. Resultados: grupo etario de los cuidadores principales de los niños/as con lesiones no intencionales fueron los adultos jóvenes (78%), siendo el género pre-dominante el femenino (78%); nivel de instrucción más alto obtenido corresponde al terciario incompleto (28%); los niños de 5 años de edad presentaron más lesiones no intencionales (27%), predominan-do el género femenino (57%). Las lesiones ocurrieron principalmente cuando se encontraban jugando (58%) y fueron principalmente las escoriaciones (20%); el modo de actuación más utilizado por los cuidadores principales correspondió a realización de primeros auxilios y posterior traslado al hospital (29%). Conclusiones: las lesiones no intencionales domésticas son muy frecuentes, entre ellas excoriaciones, quemaduras y contusiones. No hay grandes variaciones en sus tipos y frecuencias según el barrio en donde viven los infantes afectados. El modo de actuar más utilizado por el cuidador responsable ante estas lesiones son los primeros auxilios y el traslado a un hospital o cuidados en el hogar sin recurrir a un centro sanitario[AU]

Objectives: to characterize unintentional domestic injuries at home in children from 5 to 10 years old in two neighborhoods of Co-rrientes, Capital in the first semester of 2022. Methodology: obser-vational, descriptive, cross-sectional study. Consecutive type sam-pling. The total sample consisted of 185 surveys applied to the main caregivers in a period not exceeding 6 months. Variables: age of the caregiver; caregiver's sex; educational level of the main caregiver; age and sex of children; unintentional injury and its frequency; cir-cumstances in which unintentional injuries occur and mode of ac-tion in the event of unintentional injury. Results: age group of the main caregivers of children with unintentional injuries were young adults (78%), with the predominant gender being female (78%); highest level of education obtained corresponds to incomplete ter-tiary (28%); 5-year-old children presented more unintentional in-juries (27%), with a predominance of the female gender (57%). The injuries occurred mainly when they were playing (58%) and were mainly abrasions (20%); The mode of action most used by the main caregivers corresponded to first aid and subsequent transfer to the hospital (29%). Conclusions: unintentional domestic injuries are very frequent, including abrasions, burns and bruises. There are no great variations in its types and frequencies depending on the neighborhood where the affected infants live. The most used mode of action by the caregiver responsible for these injuries is first aid and transfer to a hospital or home care without resorting to a heal-th center[AU]

Objectivos: caracterizar as lesões domésticas não intencionais em crianças de 5 a 10 anos em dois bairros de Corrientes, Capital, no primeiro semestre de 2022. Metodologia: estudo observacional, descritivo, transversal. Amostragem de tipo consecutiva. A amos-tra total foi composta por 185 inquéritos aplicados aos cuidadores principais num período não superior a 6 meses. Variáveis: idade do cuidador; sexo do cuidador; escolaridade do cuidador principal; idade e sexo das crianças; lesão não intencional e sua frequência; circunstâncias em que ocorrem lesões não intencionais e modo de ação em caso de lesão não intencional. Resultados: a faixa etária dos principais cuidadores de crianças com lesões não intencionais eram adultos jovens (78%), com predomínio do sexo feminino (78%); o maior nível de escolaridade obtido corresponde ao ensino superior incompleto (28%); As crianças de 5 anos apresentaram mais lesões não intencionais (27%), com predominância do sexo feminino (57%). As lesões ocorreram principalmente durante o jogo (58%) e foram principalmente escoriações (20%); O modo de atuação mais utilizado pelos cuidadores principais correspondeu aos primei-ros socorros e posterior transferência para o hospital (29%). Con-clusões: lesões domésticas não intencionais são muito frequentes, incluindo escoriações, queimaduras e contusões. Não há grandes variações em seus tipos e frequências dependendo do bairro onde vivem os lactentes acometidos. A forma de atuação mais utilizada pelo cuidador responsável por estas lesões são os primeiros soco-rros e a transferência para um hospital ou cuidados domiciliários sem recorrer a um centro de saúde. caregivers corresponded to first aid and subsequent transfer to the hospital (29%). Conclusions: unintentional domestic injuries are very frequent, including abrasions, burns and bruises. There are no great variations in its types and frequencies depending on the neighborhood where the affected infants live. The most used mode of action by the caregiver responsible for these injuries is first aid and transfer to a hospital or home care without resorting to a heal-th center.Keywords: unintentional injury, infants, primary caregivers, accidents, home, housing, child, preschool[AU]

Factors Influencing Posttraumatic Growth Among Primary Caregivers of Patients with Oncologic Emergencies in Taiwan Intensive Care Units: A Cross-Sectional Study of Patient-Caregiver Dyads.

PURPOSE: (1) To assess the levels of fear of cancer recurrence (FCR), social support, coping styles, and posttraumatic growth; (2) to identify factors associated with posttraumatic growth; and (3) to compare patient and primary caregiver characteristics by level of posttraumatic growth (no-to-little posttraumatic growth vs. moderate-to-high posttraumatic growth) in the primary caregivers of patients with an oncologic emergency. DATA SOURCES: A cross-sectional study design was adopted. Data were collected by convenience sampling of cancer patient-caregiver dyads who experienced an oncologic emergency within the last 6 months at a medical center in northern Taiwan. The patients, who had completed cancer treatment, were in an intensive care unit. They were assessed for disease severity, physical performance, and demographic and clinical characteristics. Primary caregivers were assessed for FCR, social support, coping styles, and posttraumatic growth using a set of questionnaires. We found that 80.8% of primary caregivers reported moderate-to-high posttraumatic growth and 19.2% reported no-to-little posttraumatic growth. CONCLUSION: Greater posttraumatic growth in primary caregivers was associated with experiencing more patient oncologic emergencies, younger caregiver age, a higher caregiver FCR score, and caregivers' use of active coping behaviors. Caregivers were less likely to report posttraumatic growth if they experienced fewer patient oncologic emergencies, were older, reported lower FCR, and used active coping strategies less frequently. IMPLICATIONS FOR NURSING PRACTICE: Developing scenario-based simulations to facilitate caregiving for an oncologic emergency and providing psychological counseling to encourage active coping can help primary caregivers recover emotionally from an oncologic emergency and facilitate growth.

Perceptions of Primary Caregivers on Children's Weight Status Versus Actual Weight Status in Children Aged 6-15 Years - China, 2021.

What is already known about this topic?: Childhood obesity has been linked to adverse health outcomes during both childhood and adulthood. An accurate understanding of children's weight status by primary caregivers is essential for effective weight management strategies. What is added by this report?: The data utilized in this study were obtained from the 2021 Nutrition Improvement Program for Rural Compulsory Education Students in China. It was found that over one-third of primary caregivers underestimated their children's weight status, and more than half of the primary caregivers of overweight or obese children underreported the weight status of those children. A low level of agreement was observed between primary caregivers' perceptions of their children's weight status and the actual weight status. What are the implications for public health practice?: There is a relatively higher underestimation of children's weight in China, which necessitates more effective strategies to enhance the primary caregivers' perception of their children's weight status, especially in primary caregivers of males, younger children and children in urban areas.

Analysis of load status and management strategies of main caregivers of patients with malignant tumors of digestive tract.

Caregiver load refers to the subjective and objective negative impact of caregivers in the care of patients, and excessive load will have a serious impact on patients and caregivers themselves and can reduce their quality of life. For the main caregivers, it not only needs to care for the patients in life and daily life, but also needs to pay the cost of treatment for the patients, coupled with the need to carry out their own original work, life, etc. excessive life pressure, economic pressure, work pressure, emotional pressure, etc. lead to heavy load of the main caregivers, which can easily cause caregivers to have different degrees of psychological problems, which will cause serious adverse effects on the caregivers themselves and cancer patients, not conducive to the construction of a harmonious family and society. This article analyzes the current situation of primary caregiver burden in patients with gastrointestinal malignant tumors, analyzes its influencing factors, and specifies specific treatment strategies. It is hoped to provide scientific guidance for later related research and application.

An examination of the psychosocial consequences experienced by children and adolescents living with congenital heart disease and their primary caregivers: a scoping review protocol.

BACKGROUND: The chronicity of congenital heart disease (CHD) comes with significant psychosocial consequences for both children and adolescents living with CHD and their primary caregivers. Children and adolescents living with CHD undergo multiple traumatizing invasive surgical and medical procedures, struggle with disabilities resulting from their CHD, face unfair scrutiny and marginalization, and are at risk for mental health issues. Primary caregivers of children and adolescents living with CHD deal with increased stress, fear, anxiety, depression, and financial burden. The overarching objectives of this scoping review are to (1) determine the current state of knowledge on negative psychosocial consequences experienced by children and adolescents living with CHD and their primary caregivers in high-income countries and (2) inform research aimed at developing interventions in high-income countries to decrease the negative psychosocial consequences experienced by children and adolescents living with CHD and their primary caregivers. METHODS: Databases and grey literature searched will include MEDLINE, CINAHL, EMBASE, PsycINFO, CENTRAL, Scopus, ProQuest Theses and Dissertations, and Google advanced search. Citation mining of included studies and relevant review articles will be completed. Studies will be screened by title and abstract and then full text by two independent reviewers, using pre-defined inclusion and exclusion criteria. Quality analysis will be conducted on all included studies by two reviewers using MMAT Version 2018. Studies will not be excluded due to quality assessment. Data from all eligible studies will be independently extracted by the two reviewers and verified by consensus. Data will be presented and synthesized in evidence tables to examine potential patterns. DISCUSSION: The results of this review will provide recognition of the psychosocial impact of CHD and its treatments on children and adolescents living with CHD and their primary caregivers. It will also highlight interventions that have been developed to decrease these psychosocial consequences. The results from this review will inform a future integrated knowledge translation study by the first author aimed at decreasing one or more of the negative psychosocial consequences experienced by children or adolescents living with CHD and their primary caregivers. SYSTEMATIC REVIEW REGISTRATION: Open Science Framework (OSF) Registration, https://doi.org/10.17605/OSF.IO/ZXYGW.

Effects of a Nurse-led Survivorship Care Program on the Health and Resilience of Primary Caregivers of Patients With Advanced Head and Neck Cancer: A Randomized Controlled Trial.

OBJECTIVES: The present study aimed to evaluate the effects of a nurse-led survivorship care program (SCP) on emotional distress, social support, physical health, mental health, and resilience in primary caregivers of patients with advanced head and neck cancer. DATA SOURCES: A randomized controlled trial was conducted. One hundred patient-primary caregiver dyads were randomized into the nurse-led SCP group (experimental) or the usual care group (control). Participants completed a self-reported questionnaire, including measures of emotional distress, social support, physical health, mental health, and resilience. After 6 months, the experimental group reported a significant improvement in emotional distress, social support, physical health, mental health, and resilience. Compared with the control group, measures of emotional distress, physical health, overall resilience, and the resilience aspects of equanimity and perseverance improved in the experimental group. CONCLUSION: An SCP may feasibly help alleviate emotional distress, improve social support, increase physical and mental health, and strengthen resilience in the primary caregivers of patients with head and neck cancer. Health care providers should encourage primary caregivers to join an SCP. IMPLICATIONS FOR NURSING PRACTICE: The nurse-led SCP can be applied before patients complete treatment, which may increase the positive effect on physical health and adaptation.

[The Moderating Effect of Veteran Status on the Relationship Between Fatigue and Sleep Disturbance in Primary Caregivers of Patients With Cancer].

BACKGROUND: Fatigue may lead to disordered sleep. Primary caregivers of patients with cancer may suffer from higher levels of disordered sleep because of care-related fatigue. Older-adult veterans with cancer tend to be emotionally negative, which increases the challenges of care. PURPOSE: This study was designed to investigate the veteran status of patients as a possible moderator in the relationship between fatigue and disordered sleep in primary caregivers. METHODS: In this cross-sectional study, 127 primary caregivers of patients with cancer were randomly recruited from three hospitals in northern Taiwan. Data were collected using a demographics datasheet, the Taiwanese version of the Brief Fatigue Inventory, and the Chinese version of the Pittsburgh Sleep Quality Index. Descriptive statistics, independent t-tests, one-way ANOVA, Pearson correlation analyses, and hierarchical regression analyses were used to analyze the obtained data. RESULTS: Fatigue in the participants was shown to correlate significantly and positively with their sleep quality (r = .632, p < .01), with fatigue found to affect sleep quality positively (ß = .472, p < .001). The regression analyses showed the explanatory power of fatigue on sleep disorders (b = .148, p < .001) to be higher in caregivers of veteran patients than in caregivers of non-veteran patients (b = .091, p < .001). CONCLUSIONS / IMPLICATIONS FOR PRACTICE: Veteran patient status may moderate the relationship between fatigue and disordered sleep in primary caregivers. Nurses should assess caregiver fatigue status and offer appropriate resources.

Association of rurality, type of primary caregiver and place of death with end-of-life medical expenditures among the oldest-old population in China.

BACKGROUND: Understanding whether the type of primary caregiver and end-of-life (EOL) care location are associated with EOL medical expenditures is crucial to inform global debates on policies for efficient and effective EOL care. This study aims to assess trends in the type of primary caregiver and place of death stratified by rural‒urban status among the oldest-old population from 1998-2018 in China. A secondary objective is to determine the associations between rurality, the type of primary caregiver, place of death and EOL medical expenditures.  METHODS: A total of 20,149 deaths of people aged 80 years or older were derived from the Chinese Longitudinal Health Longevity Survey (CLHLS). Cochran-Armitage tests and Cuzick's tests were used to test trends in the type of primary caregiver and place of death over time, respectively. Tobit models were used to estimate the marginal associations of rurality, type of primary caregiver, and place of death with EOL medical expenditures because CLHLS sets 100,000 Chinese yuan (approximately US$15,286) as the upper limit of the outcome variable.  RESULTS: Of the 20,149 oldest-old people, the median age at death was 97 years old, 12,490 (weighted, 58.6%, hereafter) were female, and 8,235 lived in urban areas. From 1998-2018, the prevalence of informal caregivers significantly increased from 94.3% to 96.2%, and home death significantly increased from 86.0% to 89.5%. The proportion of people receiving help from informal caregivers significantly increased in urban decedents (16.5%) but decreased in rural decedents (-4.0%), while home death rates significantly increased among both urban (15.3%) and rural (1.8%) decedents. In the adjusted models, rural decedents spent less than urban decedents did (marginal difference [95% CI]: $-229 [$-378, $-80]). Those who died in hospitals spent more than those who died at home ($798 [$518, $1077]). No difference in medical expenditures by type of primary caregiver was observed. CONCLUSIONS: Over the past two decades, the increases in informal caregiver utilization and home deaths were unequal, leading to substantially higher EOL medical expenditures among urban decedents and deceased individuals who died at hospitals than among their counterparts who lived in rural areas and died at home.

Black and Latinx Primary Caregiver Considerations for Developing and Implementing a Machine Learning-Based Model for Detecting Child Abuse and Neglect With Implications for Racial Bias Reduction: Qualitative Interview Study With Primary Caregivers.

BACKGROUND: Child abuse and neglect, once viewed as a social problem, is now an epidemic. Moreover, health providers agree that existing stereotypes may link racial and social class issues to child abuse. The broad adoption of electronic health records (EHRs) in clinical settings offers a new avenue for addressing this epidemic. To reduce racial bias and improve the development, implementation, and outcomes of machine learning (ML)-based models that use EHR data, it is crucial to involve marginalized members of the community in the process. OBJECTIVE: This study elicited Black and Latinx primary caregivers' viewpoints regarding child abuse and neglect while living in underserved communities to highlight considerations for designing an ML-based model for detecting child abuse and neglect in emergency departments (EDs) with implications for racial bias reduction and future interventions. METHODS: We conducted a qualitative study using in-depth interviews with 20 Black and Latinx primary caregivers whose children were cared for at a single pediatric tertiary-care ED to gain insights about child abuse and neglect and their experiences with health providers. RESULTS: Three central themes were developed in the coding process: (1) primary caregivers' perspectives on the definition of child abuse and neglect, (2) primary caregivers' experiences with health providers and medical documentation, and (3) primary caregivers' perceptions of child protective services. CONCLUSIONS: Our findings highlight essential considerations from primary caregivers for developing an ML-based model for detecting child abuse and neglect in ED settings. This includes how to define child abuse and neglect from a primary caregiver lens. Miscommunication between patients and health providers can potentially lead to a misdiagnosis, and therefore, have a negative impact on medical documentation. Additionally, the outcome and application of the ML-based models for detecting abuse and neglect may cause additional harm than expected to the community. Further research is needed to validate these findings and integrate them into creating an ML-based model.