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.

Influence of caregiver understanding of their capability to perform activities of daily living, disease comprehension, and attitudes on occupational low back pain: a cross-sectional study.

[Purpose] The aim in this study was to evaluate the impact of caregiver understanding of their ability to perform activities of daily living (ADLs), movement abilities, diseases, and attitudes on the prevalence of occupational low back pain. [Participants and Methods] A cross-sectional survey was conducted of caregivers of older adults living in residential care facilities. Of the 150 questionnaires distributed, 71 were valid. The survey collected data on demographics, low back pain status using a numerical rating scale, and familiarity with ten ADLs and five diseases (stroke, rheumatoid arthritis, fractures, Parkinson's disease, and dementia). [Results] In this study, 52% of the participants reported lower back pain. Significant factors included an understanding of repositioning in ADLs, familiarity with stroke and rheumatoid arthritis, and attitudes toward using patients' residual functions. Participants with limited knowledge of repositioning and stroke, a better understanding of rheumatoid arthritis, and those who did not consider residual function were more prone to lower back pain. [Conclusion] Our findings highlight the importance of enhancing caregiver education on ADL movements and disease specifics, particularly stroke and rheumatoid arthritis, and promoting the use of patients' residual capabilities. Improved training and information sharing among caregivers may reduce the risk of occupational low back pain.

The Relationship Between Symptom Change and Use of a Web-Based Self-Help Intervention for Parents of Children With Externalizing Behavior Disorders: Exploratory Study.

BACKGROUND: Web-based self-help (WASH) has been found to be effective in the treatment of child externalizing behavior disorders. However, research on the associations of caregivers' use of WASH and symptom changes of child externalizing behaviors is lacking. OBJECTIVE: This study examined the longitudinal and reciprocal associations between the use of WASH by caregivers of children with externalizing behavior disorders and their children's externalizing behavior symptoms. METHODS: Longitudinal data of 276 families from 2 intervention conditions of a randomized controlled trial (either unguided or supported by a therapist over the phone) were analyzed. Caregiver- and clinician-rated child externalizing behavior symptoms were assessed before (T1), in the middle (T2), and after the 6-month WASH intervention (T3). Additionally, 2 indicators of the caregivers' use of the WASH intervention were considered: number of log-ins (frequency) and the percentage of completed material (intensity). Associations of caregivers' use during early (T1-T2) and late (T2-T3) treatment with child externalizing behavior symptoms were analyzed using path analyses (structural equation modeling). RESULTS: Frequency and intensity of use were higher during the first 3 months than during the next 3 months of the intervention period. The number of log-ins at early treatment was significantly but weakly associated with caregiver-reported child externalizing behavior symptoms in the long term (T3). Moreover, caregiver-reported child externalizing severity at T2 predicted the number of log-ins in the late treatment. The results were not replicated when considering the percentage of completed material as a measure of use or when considering clinician ratings of child externalizing behavior symptoms. CONCLUSIONS: The findings provide the first, albeit weak, evidence for longitudinal associations between caregivers' use of WASH and improvements in caregiver-rated child externalizing behavior symptoms. However, as the associations were rather weak and could not be replicated across different rater perspectives and operationalizations of use, further research is needed to better understand these relations and their interplay with other putative influence factors (eg, quality of the implementation of the interventions, changes in parenting behaviors). TRIAL REGISTRATION: German Clinical Trials Register DRKS00013456; https://www.drks.de/DRKS00013456. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1186/s12888-020-2481-0.

The hidden costs of informal caregiving: a concept analysis.

BACKGROUND: "The hidden costs of informal caregiving" is an interdisciplinary concept. While caregivers make a significant contribution to the process of caregiving, they sacrifice their leisure time, and incur risks of dropping out of the job, impaired mental and physical health, and decreased well-being within the context of caregiving. Those invisible sacrifices are often overlooked and described as hidden costs of informal caregiving. However, the conceptualisation of hidden costs of informal caregiving has not yet been clarified and scientifically assessed. The research aimed to clarify the concept of hidden costs of informal caregiving and develop an operational definition. METHODS: Walker and Avant's concept analysis was conducted. Databases of CBM, CNKI, WanFang, VIP, PubMed, Embase, CINAHL, Web of Science, MEDLINE, Cochrane Library, Econlit, CINAHL and ProQuest were searched with the term "hidden costs of informal caregiving". Information about the uses of the concept, defining attributes, model cases, antecedents, consequences and empirical referents of hidden costs of informal caregiving was extracted and synthesized. RESULTS: A total of 25 articles were included. The six defining attributes of hidden costs of informal caregiving were identified as including "undertaken by informal caregivers", "the time costs of caregiving", "costs of career development" "physical well-being costs", "mental well-being costs" and "social relationship costs". Personal characteristics of the caregivers and care recipients, along with caregiving attributes, were among the antecedents. The consequences of hidden costs of informal caregiving resulted in negative influences which included poor quality of life, life-altering decisions, options for the type of care, some degree of economic hardship, decreased compliance with treatment plans and monetary value informal caregivers are willing to pay to be replaced. CONCLUSION: This concept analysis decisively illuminated the hitherto nebulous concept and expanded the contents of hidden costs of informal caregiving, which will foster a deeper appreciation of the invisible cost of caregivers. Moreover, it will provide a reference for the study of the hidden costs of informal caregiving in future, contribute to the development of assessment tools and theoretical models of hidden costs of informal caregiving, and create a basis for designing an evidence-based care program.

Comparing Knowledge and Perceptions of Palliative Care Among Neuro-Oncology Patients, Caregivers, and Providers to a Representative U.S. Sample.

BACKGROUND: Primary brain tumors (PBTs) pose a significant health challenge, affecting patients and their caregivers. While early integration of palliative care (PC) has shown benefits in advanced cancer, its integration for PBT patients, particularly glioblastoma (GBM) patients, remains complex. We hypothesized that our previous PC integration efforts may have failed due to knowledge-gaps and misconceptions among patients, caregivers, and providers. OBJECTIVE: This study aimed to identify knowledge gaps and misconceptions about PC among patients with primary brain tumors (PBTs), their caregivers, and their medical providers. METHOD: An electronic survey was distributed to PBT patients, caregivers, and medical providers, that included questions regarding PC from the Health Information National Trends Survey (HINTS). Survey responses were analyzed; comparisons were made between the 3 groups as well as the general population. RESULTS: Of 141 respondents (59 patients, 57 caregivers, and 25 providers), each group held perspectives on PC differing from the general population. While all groups had an improved understanding of PC's role in symptom management, uncertainty persisted among patients and caregivers regarding life-prolonging treatment and certain PC goals like caregiver support or end-of-life care. CONCLUSION: Understanding gaps in knowledge and perceptions of PC among PBT patients and caregivers is crucial for effective intervention, with caregivers playing a vital role in advocating for PC. Future research should explore factors influencing these perceptions and development of targeted education to improve early PC referrals for patients with PBTs.

The impact of family burden on the psychological distress of informal caregivers for older adults living with dementia: The role of internal and external coping resources.

OBJECTIVES: Numerous studies have demonstrated that informal caregivers of people living with dementia (PLWD) have serious adverse psychological problems, but little research has been done on the role of integrating caregivers' various coping resources in reducing psychological effects. Therefore, the current study aimed to investigate the impact of caregivers' internal (self-efficacy and positive coping) and external coping resources (family function and social support) on the family burden and psychological distress. METHODS: A cross-sectional study, and a self-designed questionnaire, Family Burden Scale of Disease, Kessler Psychological Distress Scale, General Self-Efficacy Scale, Simplified Coping Style Question, The Family Adaptation, Partnership, Growth, Affection, Resolve Scale and Social Support Rating Scale were completed by 193 pairs of PLWD and caregivers. Partial least squares-structural equation modeling (PLS-SEM) was used to analyze the mediating effects of coping resources. RESULTS: Self-efficacy, positive coping, family function, and social support respectively mediated the relationship between family burden and psychological distress (ß = 0.402, ß = 0.059, ß = -0.111, ß = 0.053; P < 0.05). Besides, the serial mediation effects of self-efficacy and positive coping, family function and social support were also significant (ß = 0.104, ß = 0.045; P < 0.05). CONCLUSIONS: This study confirmed the mediating role of internal and external coping resources between family burden and psychological distress in caregivers of older PLWD, providing a theoretical basis for promoting the,mental health of caregivers.

Dietary needs, barriers, and facilitators among patients on hemodialysis and their caregivers: The GoodRENal Project in Spain.

OBJECTIVE: Dietary restrictions are common in patients undergoing hemodialysis (HD). These restrictions result in a complex diet that becomes difficult for patients to understand and to follow. Therefore, we aimed to identify dietary needs, and barriers and facilitators that influence the adherence to dietary recommendations as perceived by patients on HD and their caregivers. METHODS: Seventy-two Spanish patients on HD and fifty-seven caregivers participated in this explorative study by replying a questionnaire consisting of 20 and 10 questions respectively. The responses were assessed using a Likert scale varying from 1 to 5 (strongly agree, agree, neither disagree or disagree, disagree, strongly disagree, respectively) to evaluate the perception of patients and caregivers regarding dietary needs, barriers and facilitators to adhere to the recommended diet. For analysis purposes, the responses were grouped in three categories (agree, neither agree or disagree, disagree). RESULTS: Seventy percent of the patients agreed that knowing the food sources of potassium, protein and phosphate was a need for them to know to be able to adhere to the dietary recommendations. Moreover, patients stated that not being able to eat what they liked, and feeling thirsty, were important barriers. For caregivers, the support of a renal dietitian was mentioned as an important facilitator to assist those they cared for to adhere to the diet. CONCLUSIONS: Knowing food sources of potassium, phosphate, and protein, exploring foods patients like to eat and adjusting fluid intake to avoid feeling thirsty were identified as important by the patients. These findings can be used to develop strategies and educational material to improve the dietary adherence in patients undergoing HD. Moreover, the presence of a renal dietitian was identified as an important resource by the caregivers.

Accelerated Resolution Therapy for Early Maladaptive Grief Study Protocol.

The objective of this manuscript is to present the protocol of a study aiming to test the effects of Accelerated Resolution Therapy® (ART) on pre-loss grief and prolonged grief among older adult family caregivers. This study also aims to better understand predictors of response to ART®, and cognitive processes that occur among grieving individuals following ART®. DESIGN: The study is a double-blinded, randomized clinical trial. SETTING: This study takes place at both inpatient and outpatient palliative care and hospice programs at two Mayo Clinic sites. PARTICIPANTS: Participants include older adult (≥ 60 years) immediate family members who are primary caregivers of someone with an advanced illness and life expectancy of less than 12 months. INTERVENTION: Participants are randomized to either the ART® intervention group or the attention control group. In the ART® intervention, caregivers engage in imaginal exposure, lateral eye movements, and imagery rescripting via 4 sessions lasting 1-1.5 hours each. The attention control group receives a standard social work intervention, including education, resources, and active listening, which is matched for time and attention. Both interventions will longitudinally follow caregivers from active caregiving into bereavement. OUTCOMES MEASURED: The primary outcomes of pre-loss grief and prolonged grief will be measured with the Pre-Loss Grief 12 item (PG-12-R) before the care recipient's death, and with the Prolonged Grief-13 (PG-13-R) afterwards.

Burden and associated characteristics in caregivers of Parkinson's disease patients.

BACKGROUND: Parkinson's disease (PD) increases patient load and requirements of care. Determining the burden on PD patients' caregivers and associated factors may help to identify methods to reduce caregiver burden. This study investigated the factors associated with caregiver burden among PD patients caregivers. METHODS: Eighty-five PD patients and 85 caregivers were included in the study. Zarit Burden Interview (ZBI) was used to measure caregiver burden; the Ways of Coping Scale (WCS) was used for coping; Modified Hoehn-Yahr Staging (MHYS) was used for staging patients. The International Parkinson and Movement Disorder Society Unified Parkinson's Disease Rating Scale (MDS-UPDRS) parts 1 and 3 were used to evaluate non-motor and motor problems. Caregivers' depression and anxiety levels were evaluated with the Beck Depression Inventory and Beck Anxiety Inventory (BAI). Spearmen correlation coefficient was used to evaluate the relationship of variables with the ZBI score, and multiple linear regression analysis was used to determine the predictors of the ZBI score. RESULTS: A positive significant relationship was found between the ZBI score and BAI score, MHYS score, WCS total score, and subscales: keeping to self, seeking refuge in fate, and seeking refuge in supernatural forces. MHYS score, WCS total score, BAI score, and MDS-UPDRS-1 were predictors of the ZBI score. CONCLUSIONS: The anxiety levels of caregivers, their ways of coping, and the patient's stage of the disease are important in caregiver burden. Coping ways can be changed to reduce the care burden. Developing psychological interventions for caregivers to change their coping styles can be important.

Effectiveness of an mHealth App That Uses Financial Incentives and Gamification to Promote Health Behavior Change in Adolescents and Caregivers: Protocol for a Clinic-Based Randomized Controlled Trial.

BACKGROUND: Adolescent and adult obesity continues to be a public health epidemic in the United States. Despite the popularity of mHealth apps with gamification among adolescents, there are insufficient studies to evaluate the efficacy of gamified mHealth apps and financial incentives to motivate sustained health behavior change in adolescents or their adult caregivers. OBJECTIVE: This study aims to evaluate the effectiveness of gamification techniques and financial incentives used in the novel "CommitFit" mHealth app to motivate health behavior change and improve various mental and physical health metrics in adolescents and their caregivers. METHODS: This study is a 3-month randomized controlled trial (RCT) with 30 adolescents (aged 13-15 years) and their adult caregivers (N=60). It evaluates "CommitFit," which uses gamification including points and leaderboards to motivate logging and achievement of self-selected health behavior goals (eg, more water, sleep, physical activity, fruits, or vegetables or fewer sugary beverages). The RCT had three arms, each with 10 dyads: (1) CommitFit-only users; (2) CommitFit$, where adolescents were paid US $0.05 for each point they earned; and (3) waitlist control. Intervention dyads used the app for 3 months and had the option to use it for the fourth month without prompts or extra financial incentives. User analytic software was used to evaluate the frequency of user logs and goal achievement. Monthly surveys evaluated self-reported change in the 5 CommitFit health behaviors. Changes in BMI and blood pressure were evaluated for all participants at 3 clinical visits. Mental health, gamification, and behavior economics surveys were completed during the clinical visits. RESULTS: Recruitment began in August 2023 and was completed in 10 weeks. The research team successfully recruited and enrolled 30 dyads. Researchers emailed and called 89 caregivers on a physician-approved adolescent patient list, a 33% recruitment rate. Data collection and analysis will be conducted in the spring and summer of 2024. The results of this study are anticipated to be published between late 2024 and early 2025. CONCLUSIONS: This RCT will expand knowledge of the effectiveness of gamification techniques, financial incentives, and mHealth apps to motivate sustained health behavior change among adolescents and caregivers. These results may offer new opportunities to caregivers, health insurers, health care systems, and clinicians to motivate health behavior change in adolescents and caregivers, with the ultimate goal of preventing or reducing obesity and obesity-related diseases. Additional gamification, mental health surveys, and app user analytics included in the study may provide further insight into the characteristics of adolescents or caregivers who would benefit the most from using a gamified mHealth app like CommitFit. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/63505.

A Feasibility Study of Qualitative Methods Using the Zarit Burden Interview in Heart Failure Caregivers.

OBJECTIVES: The primary goal of this study was to identify and understand the burden experienced by informal caregivers of patients with HF at the time of hospital discharge. The researchers aimed to guide future education interventions and promote informal caregiver burden screening. DESIGN: The researchers administered the Zarit Burden Interview (ZBI) as a quantitative tool to assess informal caregiver burden. The ZBI is a standardized questionnaire used to measure the extent of burden experienced by informal caregivers. After administering the ZBI, the researchers conducted semi-structured interviews with five informal caregivers of patients with HF. These interviews were guided by probing questions related to ZBI items that were rated with high levels of burden (3 "quite frequently" or 4 "nearly always"). RESULTS: The quantitative data showed that the informal caregivers' burden scores on the ZBI ranged from 4 to 41. Male informal caregivers tended to report lower burden scores. The non-spouse informal caregiver had the highest burden score at 41. The qualitative analysis of the interviews revealed several themes related to informal caregiver burden, including fear, patient expectations, patient dependence on caregivers, social isolation, and stressors associated with medication changes after discharge. Despite the qualitative insights into specific burden-related issues, the quantitative analysis of the ZBI scores showed that, on average, informal caregivers reported little to no burden at the time of acute exacerbation of HF in the patient. CONCLUSION: The study's findings suggest that while informal caregivers may not report prominent levels of overall burden, they do face specific challenges and stressors, such as social isolation and managing medication changes post-discharge. These findings can inform the development of targeted support and interventions for informal caregivers of patients with HF.

Caring through uncertainty: a qualitative exploration of older colorectal cancer caregivers' experiences during palliative chemotherapy.

PURPOSE: Despite the increasing research on cancer patient caregivers, there is still a lack of detailed understanding about the experiences of spouses caring for elderly colorectal cancer patients. This study aimed to fill this gap by examining the caregiving experiences of spouses during palliative chemotherapy for elderly Chinese colorectal cancer patients. METHODS: Using a qualitative descriptive design, we recruited spousal caregivers of elderly colorectal cancer patients undergoing palliative chemotherapy. Semistructured interviews were conducted, and thematic analysis was employed to analyse the data. RESULTS: Sixteen caregivers aged 60 to 82 years participated in the interviews. The analysis revealed three main themes: ambivalence, multiple role adaptation to conflicts, and the coexistence of hope and pressure. These themes shed light on the behaviors of older caregivers and the challenges they face, including physical and psychosocial issues associated with aging. CONCLUSION: This study highlights the significant stress and challenges experienced by older caregivers, characterized by intertwined emotions such as anxiety about their spouses' health deterioration, exhaustion from long-term care responsibilities, and anticipation of treatment outcomes.

Mediating effect of cognitive appraisal and coping on anticipatory grief in family caregivers of patients with cancer: a Bayesian structural equation model study.

BACKGROUND: Anticipatory grief is common among family caregivers of cancer patients and may be related to caregiver burden, family resilience, psychological capital, cognitive appraisal, and coping strategies. The purpose of this study was to examine the mediating role of cognitive appraisal and coping strategies in the relationship between caregiver burden, family resilience, psychological capital, and anticipatory grief among caregivers of cancer patients. METHODS: This study surveyed from January to September 2023 among 265 caregivers of lung and breast cancer patients in two public hospitals. They completed measures of caregiver burden, family resilience, psychological capital, cognitive appraisal, coping, and anticipatory grief. AMOS software was used to model the data with Bayesian structural equation modeling. RESULTS: Bayesian structural equation modeling results showed that caregiver burden had a direct effect on anticipatory grief. The chain mediating effects for cognitive appraisal tendency and coping tendency between caregiver burden, family resilience, psychological capital, and anticipatory grief, respectively. Coping tendency acted as a mediator between psychological capital and anticipatory grief. CONCLUSIONS: The relationships between caregiver burden, family resilience, and psychological capital with anticipatory grief are embedded in the mediating effects of cognitive appraisal and coping. Early identification and intervention for caregiver burden, family resilience, psychological capital, cognitive appraisal, and coping methods may prevent anticipatory grief in caregivers of cancer patients.

Forecasting the incidence frequencies of schizophrenia using deep learning.

Mental disorders are becoming increasingly prevalent worldwide, and accurate incidence forecasting is crucial for effective mental health strategies. This study developed a long short-term memory (LSTM)-based recurrent neural network model to predict schizophrenia in inpatients in Taiwan. Data was collected on individuals aged over 20 years and diagnosed with schizophrenia between 1998 and 2015 from the National Health Insurance Research Database (NHIRD). The study compared six models, including LSTM, exponential smoothing, autoregressive integrated moving average, particle swarm optimization (PSO), PSO-based support vector regression, and deep neural network models, in terms of their predictive performance. The results showed that the LSTM model had the best accuracy, with the lowest mean absolute percentage error (2.34), root mean square error (157.42), and mean average error (154,831.70). This finding highlights the reliability of the LSTM model for forecasting mental disorder incidence. The study's findings provide valuable insights that can help government administrators devise clinical strategies for schizophrenia, and policymakers can use these predictions to formulate healthcare education and financial planning initiatives, fostering support networks for patients, caregivers, and the public.

Navigating the disclosure landscape: Parents' perspectives on healthcare professionals' role in supporting intersex children and families.

Intersex, an umbrella term, describes individuals with sex characteristics that cannot be exclusively categorized into binary definitions of male or female. The intersex community faces a lack of social visibility perpetuated by a history of medical discrimination and pathologization shaped by "normalizing" genital surgeries without the child's consent. Despite efforts to reform clinical practice, there remains a paucity of research centering the needs of the intersex community and their families. This study explored parents' perspectives on how healthcare professionals (HCPs), such as genetics professionals, can provide patient-centered education and support when parents first learn of their child's intersex variation, with the aim of offering recommendations to HCPs to promote parental adjustment and protect intersex children's right to autonomy. Thirteen qualitative semi-structured interviews were conducted with 14 parents of intersex children. Through reflexive thematic analysis, under the framework of an agency-based approach to intersex health, thematic categories were inductively conceptualized, including barriers and facilitators to HCPs' sensitivity and to parental adjustment in the early disclosure environment. Barriers to HCPs' sensitivity were imposed by educational, religious, or medical institutions, along with sociocultural prejudices and pathologizing language. Barriers to parental adaptation included uncertainty regarding their child's future, sociocultural gender norms, and unsuitable information provision. Incorporating parental needs in the disclosure environment can facilitate familial acceptance, including normalization of variations of sex characteristics (VSCs), enhanced medical education, facilitation of patients' navigation, and prioritization of parents' social support needs.

Effects of Digital Picture Books on Young Children Undergoing Cardiac Catheterisation and Their Family Caregivers: A Randomised Controlled Trial.

AIM: To assess the impact of digital picture books on preoperative anxiety, pain and sleep quality in young children undergoing cardiac catheterisation and the anxiety of their family caregivers. DESIGN: A randomised, single-blinded, two-arm, parallel-group controlled trial. METHODS: Participants are young children aged 2-7 years with congenital heart disease scheduled for cardiac catheterisation and their family caregivers. They were enrolled at Fujian Medical University Union Hospital between September 2022 and July 2023. They were randomised to either a control group receiving usual care or an intervention group receiving digital picture book sessions. Anxiety and pain levels were assessed using standardised scales, and sleep quality was measured using actigraphy. RESULTS: The study included 64 pairs of young children and family caregivers. Digital picture books significantly reduced preoperative anxiety and bandage removal pain in children and anxiety in family caregivers. However, there was no statistical difference in sleep quality between the intervention group and the control group. CONCLUSIONS: Digital picture books prove to be an effective intervention for reducing anxiety and pain in paediatric cardiac catheterisation patients and anxiety of their family caregivers. The intervention did not affect sleep quality, suggesting the need for additional strategies to address this aspect of the hospital experience. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: This study demonstrated the effectiveness of digitally illustrated books in reducing preoperative anxiety and pain in young children and anxiety in family caregivers. Digital picture books offer a creative and engaging way to help children and their families cope with the stress and anxiety associated with medical procedures. Further research in this area may lead to the development of more innovative and effective interventions for paediatric patients and their family caregivers. IMPACT: The study's impact lies in its innovative approach to addressing the psychological and emotional challenges faced by young children and their family caregivers during the stressful experience of cardiac catheterisation. By demonstrating the efficacy of digital picture books in significantly reducing preoperative anxiety and postoperative pain, the research presents a non-pharmacological, accessible and engaging intervention that can be seamlessly integrated into existing healthcare practices. The findings have the potential to transform paediatric care by offering a safe, developmentally appropriate and cost-effective method to support the emotional well-being of children and their families, thereby enhancing the overall patient experience and clinical outcomes. Moreover, the study's emphasis on family caregiver involvement underscores the importance of a holistic approach to care that considers the needs of both the patient and their support system. PATIENT OR PUBLIC CONTRIBUTION: Children and their family caregivers were invited to provide valuable input which has been critical to the development of the intervention. The participant information sheet and consent form, as well as the consent/recruitment process, were reviewed by a consumer advisor advocate from the pilot study. REPORTING METHOD: CONSORT. TRIAL REGISTRATION: Chinese clinical trial registry: ChiCTR2200063973. Registered on 22 September 2022, https://www.chictr.org.cn/showproj.html?proj=132833.

Carers in post-stroke aphasia: a scoping review of interventions and outcomes beyond communication partner training.

PURPOSE: Carers of people with aphasia face unique challenges. Research has demonstrated that these carers have a higher burden of care and more negative stroke-related outcomes in comparison to carers of stroke survivors without aphasia. The aim of this scoping review was to map the range of interventions for carers other than communication partner training and to examine their outcomes. MATERIALS AND METHODS: We conducted a scoping review on this topic. RESULTS: Twenty studies were included. Most studies were case series with four randomised control trials. Both quantitative and qualitative approaches were used. Most studies occurred during the long-term phase of care. Two interventions had only carers as participants. Interventions were comprised of different combinations of intervention components including psychoeducation, skill-building, and support. There was high variability on who led the interventions, the format, and the dose/schedule. Twenty-eight different outcome measures for carers and dyads were used across various domains with overall positive outcomes post-intervention. CONCLUSIONS: This review uncovered a wide range of formats, dosages, and outcome measures in interventions for carers. Encouragingly, the majority of these interventions included psychoeducation, skill-building, and support components. While most studies were case series, there are promising interventions that have the potential to enhance carer wellbeing.

Carer targeted interventions play an important role in reducing carer burden and increasing psychological wellbeing for carers of people with aphasia post-stroke.A tailored intervention for carers of people with aphasia should include components of psychoeducation, skill-building, and support to meet their needs across the continuum of care.Recognising carers as clients has the potential to improve healthcare outcomes for the carer and the person with aphasia.

The Social and Financial Burden on Families of Type 1 Diabetic Pediatric Patients in Madinah Region, Saudi Arabia.

INTRODUCTION: Caregivers and families play an essential role in managing and caring for type 1 diabetes mellitus (T1DM) pediatric patients. However, caregiving is usually associated with social and financial burdens. This study assesses the burden and underlying social and financial factors among Saudi caregivers of pediatric patients with T1DM. METHODS: A cross-sectional study was conducted among caregivers and families of T1DM pediatric patients attending the Diabetic Center at King Fahad Hospital (KFH) and the Diabetic Center at King Salman Bin Abdulaziz Medical City (KSAMC) in Al-Madinah City, Kingdom of Saudi Arabia (KSA) from January 2024 to June 2024. The data collection was done using the Zarit Burden Questionnaire and the Caregiver Care Cost Assessment Questionnaire. RESULTS: The study surveyed 376 participants, primarily females (N = 285, 75.8%) and married (N = 317, 84.3%), with a majority aged between 18 and 47 years (N = 322, 85.6%). The burden experienced by families with T1DM pediatric patients was moderate, with a mean total burden level score of 27.8 ± 16.3. For those employed, most reported working as usual (N = 107, 81.1%), with most spending less than two hours on care weekly (N = 76, 57.6%). A significant association was found between the financial impact of caregiving on saving, spending, and general financial stress and social burden (p < 0.01). CONCLUSION: The findings show a moderate burden faced by caretakers of T1DM pediatric patients, with a strong correlation between the financial impact of caregiving on saving, spending, and general financial stress and burden level. The findings also highlight the significant impact of caregiving on the financial stress and lifestyle changes that caregivers endure.

Burden and Quality of Life of Family Caregivers Caring for Patients on Hemodialysis.

The objective of this systematic review was the evaluation of the burden of family caregivers of patients on hemodialysis and its correlation with caregivers' quality of life. Articles from PubMed and Scopus published between 2012 to 2022 were retrieved from using the key words burden, family caregivers, quality of life, and hemodialysis patients. Articles reviewed included quantitative data indicating the family caregiver burden ranged from moderate to severe. The correlation between burden and quality of life was negative. Nephrology nurses in hemodialysis units should contribute to the design and implementation of educational programs and support strategies for family caregivers of patients on hemodialysis to support caregivers, reduce their burden, and improve their quality of life.