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.

Barriers to medical consultation and strategies for enhancing the prevention and reporting of child abuse: A cross-sectional survey of caregivers of paediatric patients at a tertiary care center in Karachi, Pakistan.

Objective: To assess the knowledge of caregivers in a tertiary care setting about child abuse, their perception of potential barriers in the way of seeking medical advice for the victims, and to identify proposed solutions to ensure prevention and reporting of child abuse. METHODS: The cross-sectional study was conducted from June to December 2022 at the paediatric ward of the Aga Khan University Hospital, Karachi, and comprised caregivers who were attendants of inpatients. Data was collected using a predesigned anonymous questionnaire consisting of demographic information and 27 items that were scored on a 6-point Likert scale. Data was analysed using SPSS 20. RESULTS: Of the 144 caregivers, 96(66.6%) were females and 48(33.3%) were males. Overall, 86(59.7%) were aged <35 years, 132(91.7%) were married, and 120(83.3%) were the admitted child's parent. The majority of caregivers 110(76.4%) perceived themselves to possess a high level of knowledge about child abuse. Barriers identified included a lack of trust in police and medicolegal departments 136(94.4%), fear of repercussion from the suspect 120(83.3%) and lack of confidentiality of the victims' identity 116(80.6%). The proposed solutions included spreading awareness among teachers 136(94.4%) and caregivers 131(91.0%) about timely reporting and consultation, and developing proper mechanisms to follow-up on victims 133(92.4%). There were significant associations between some demographic characteristics of the respondents and their self-perceived knowledge and perceptions (p<0.05). Conclusion: There was found a need to enhance public trust, ensure confidentiality, and fostering awareness through targeted strategies for a safer and more facilitative environment for children.

Suicidal Thoughts and Behaviors in Parents Caring for Children with Disabilities and Long-Term Illnesses.

OBJECTIVE: There is a growing body of evidence on suicide risk in family carers, but minimal research on parents caring for children with disabilities and long-term illnesses. The aim of this study was to conduct the first dedicated research on suicide risk in parent carers and identify: (1) the number of parent carers experiencing suicidal thoughts and behaviors, and (2) the risk and protective factors for suicidality in this population. METHOD: A cross-sectional survey of parent carers in England (n = 750), co-produced with parent carers. Suicidal thoughts and behaviors were measured with questions from the Adult Psychiatric Morbidity Survey. Frequencies summarized the proportion of carers experiencing suicidal thoughts and behaviors. Logistic regressions identified risk and protective factors. RESULTS: 42% of parents had experienced suicidal thoughts and behaviors while caring for a disabled or chronically ill child. Only half had sought help for these experiences. Depression, entrapment, dysfunctional coping, and having a mental health diagnosis prior to caring, were significant risk factors. CONCLUSION: Parent carers contemplate suicide at levels that exceed those of other family carers and the general public. There is an urgent need, in policy and practice, to recognize parent carers as a priority group for prevention and intervention.

This is the first dedicated study of suicide risk in parent carers.More than 40% of parents had considered suicide while caring for a disabled or chronically ill child.The risk factors for suicidal ideation in parent carers were depression, entrapment, dysfunctional coping strategies, and having a mental health diagnosis prior to becoming a carer.Parent carers may be a high-risk group for suicide and need urgent support.

Quality of life and death anxiety among caregivers of patients with advanced cancer: the mediating effect of trait anxious personality and the moderating effect of social support.

PURPOSE: To explore the mediating role of trait anxious personality in the association between quality of life (QoL) and death anxiety (DA), as well as to test the moderating effect of social support in the mediation model. METHODS: The Death Anxiety Scale, Quality of Life Scale, State-Trait Anxiety Scale, and Social Support Rating Scale were used to measure 588 family caregivers of advanced cancer patients. We then constructed a moderated mediation model. RESULTS: The presence of QoL was negatively associated with DA (ß = - 0.67, p < 0.01). Trait anxious personality partially mediated the relationship between QoL and DA (indirect effect ß = - 0.08, p < 0.01). Social support moderated both the antecedent and subsequent segments of the mediating paths of "QoL → trait anxious personality → DA" and the direct relationship between QoL and DA. Among caregivers with a low level of social support, the mediating effect coefficient of trait anxious personality was higher at 0.25 (95% confidence interval (CI): 0.059-0.182), in contrast to caregivers with a high level of social support, where the mediating effect coefficient of trait anxious personality was 0.11 (95% CI: 0.029-0.072). CONCLUSION: QoL is directly associated with an increased risk of DA and indirectly related to DA by increasing the risk of trait anxious personality among caregivers. Social support can moderate the mediating effect of trait anxious personality and the relationship between QoL and DA. The intervention strategy for preventing DA among caregivers who have encountered QoL reduction should focus on reducing trait anxious personality and social support.

Impact of the COVID-19 pandemic on the self-care and health condition of the older adults. CUIDAMOS+75. A mixed methods study protocol.

Aims: To assess the impact of the COVID-19 pandemic on the health condition of people ≥75 years of age and on their family caregivers in Spain. Design: Multicentric, mixed method concurrent study. Methods: This work, which will be conducted within the primary care setting in 11 administrative regions of Spain, will include three coordinated studies with different methodologies. The first is a population-based cohort study that will use real-life data to analyze the rates and evolution of health needs, care provision, and services utilization before, during, and after the pandemic. The second is a prospective cohort study with 18 months of follow-up that will evaluate the impact of COVID-19 disease on mortality, frailty, functional and cognitive capacity, and quality of life of the participants. Finally, the third will be a qualitative study with a critical social approach to understand and interpret the social, political, and economic dimensions associated with the use of health services during the pandemic. We have followed the SPIRIT Checklist to address trial protocol and related documents. This research is being funded by the Instituto de Salud Carlos III since 2021 and was approved by its ethics committee (June 2022). Discussion: The study findings will reveal the long-term impact of the COVID-19 pandemic on the older adults and their caregivers. This information will serve policymakers to adapt health policies to the needs of this population in situations of maximum stress, such as that produced by the COVID-19 pandemic. Trial Registration: Identifier: NCT05249868 [ClinicalTrials.gov].

Gender Inequalities of Health and Quality of Life in Informal Caregivers in Spain: Protocol for the Longitudinal and Multicenter CUIDAR-SE Study.

BACKGROUND: The aging population and increased disability prevalence in Spain have heightened the demand for long-term care. Informal caregiving, primarily performed by women, plays a crucial role in this scenario. This protocol outlines the CUIDAR-SE study, focusing on the gender-specific impact of informal caregiving on health and quality of life among caregivers in Andalusia and the Basque Country from 2013 to 2024. OBJECTIVE: This study aims to analyze the gender differences in health and quality of life indicators of informal caregivers residing in 2 Spanish autonomous communities (Granada, Andalusia, and Gipuzkoa; Basque Country) and their evolution over time, in relation to the characteristics of caregivers, the caregiving situation, and support received. METHODS: The CUIDAR-SE study uses a longitudinal, multicenter design across 3 phases, tracking health and quality of life indicators among informal caregivers. Using a questionnaire adapted to the Spanish context that uses validated scales and multilevel analysis, the research captures changes in caregivers' experiences amid societal crises, notably the 2008 economic crisis and the COVID-19 pandemic. A multistage randomized cluster sampling technique is used to minimize study design effects. RESULTS: Funding for the CUIDAR-SE study was in 3 phases starting in January 2013, 2017, and 2021, spanning a 10-year period. Data collection commenced in 2013 and continued annually, except for 2016 and 2020 due to financial and pandemic-related challenges. As of March 2024, a total of 1294 participants have been enrolled, with data collection ongoing for 2023. Initial data analysis focused on gender disparities in caregiver health, quality of life, burden, perceived needs, and received support, with results from phase I published. Currently, analysis is ongoing for phases II and III, as well as longitudinal analysis across all phases. CONCLUSIONS: This protocol aims to provide comprehensive insights into caregiving dynamics and caregivers' experiences over time, as well as understand the role of caregiving on gender inequality in health, considering regional variations. Despite limitations in participant recruitment, focusing on registered caregivers, the study offers a detailed exploration of the health impacts of caregiving in Spain. The incorporation of a gender perspective and the examination of diverse contextual factors enrich the study's depth, contributing significantly to the discourse on caregiving health complexities in Spain. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/58440.

The evaluation and enhancement strategies of core competencies for older adult caregivers in integrated medical and older adult care institutions.

The study aimed to understand the main skills of older adult caregivers and find ways to improve these skills. We selected participants using a method called random cluster sampling, where caregivers from 17 different medical and nursing care facilities across seven districts in Hangzhou were chosen. We collected 492 valid questionnaires and conducted interviews with 150 people. To analyze the data, we used T-tests and Analysis of Variance (ANOVA) to identify what factors affect caregivers' skills. We also performed multiple regression analysis to explore these factors in more depth. The analysis showed that age (p = 0.041), annual income (p < 0.001), and having a training certificate (p < 0.001) significantly influence the skills of older adult caregivers. Specifically, caregivers' age and whether they had a training certificate were linked to how competent they were, with income being a very strong factor. The study highlighted a gap between the caregivers' current skills and the skills needed for high-quality care. This gap shows the need for training programs that are specifically tailored to the caregivers' diverse needs and cultural backgrounds. Medical and eldercare facilities should adjust their work and educational programs accordingly. It's also important to look at how caregivers are paid to make sure their salary reflects their skills and the quality of care they provide. Finally, it's crucial to integrate a comprehensive training program that leads to certification within eldercare organizations.

Asking the "Right" Questions about Financial Hardship: Using Cognitive Interviews with Adolescents and Young Adults with Cancer and Their Caregivers to Inform Measure Development.

Purpose: Financial hardship as a result of cancer treatment can have a significant and lasting negative impact on adolescents and young adults (AYAs) and their families. To address a lack of developmentally informed and psychometrically sound measures of financial hardship for AYAs and their caregivers, we used rigorous measurement development methods recommended by the National Institutes of Health's Patient-Reported Outcomes Measurement Information System® (PROMIS®) to determine comprehensibility and relevance of measure content. Methods: Our multi-step approach involved item identification, refinement, and generation; translatability and reading level review; and cognitive interviews. A purposive sample of 25 AYAs and 10 caregivers participated, ensuring representation across age, education, gender, race/ethnicity, and cancer type. Results: Fifty patient-reported and caregiver-reported items were developed across material, psychosocial, and behavioral subdomains of financial hardship. Translatability and reading level reviews resulted in 22 patient-reported and 25 caregiver-reported items being rewritten. Eighty-eight percent of patients and all caregivers described the items as easy to answer. Younger AYAs (15 to 25 years of age) were more likely to say the items were less relevant for them. Forty-six patient-reported and 48 caregiver-reported items were recommended for further testing. Conclusion: This study is the first to use in-depth qualitative methods to center AYA patient and caregiver experiences in the creation of new measures of financial hardship. Data support the comprehensibility and content validity of these preliminary item banks. Future large-scale, quantitative testing will lead to additional refinements and support the use of short forms and computer-adaptive testing for a diverse sample of AYAs and their caregivers.

"There is No Help:" Caregiver Perspectives on Service Needs for Adolescents and Adults with Profound Autism.

The underrepresentation of individuals with profound autism (who require 24/7 access to care) in autism research has resulted in limited knowledge about their service needs and a lack of evidence-based practices tailored to those needs. This study explored caregiver perspectives on service needs, barriers to accessing care, and treatment priorities to guide treatment development and improvement of service delivery. A sequential mixed-methods design integrated quantitative survey data (n = 423; Mage = 18.89 years; 26.7% female) with qualitative interviews (n = 20) with caregivers of adolescents and adults with profound autism. Quantitative findings indicated regular socialization opportunities were the most frequently endorsed unmet service need (60.3% of caregivers), followed by primary health care with autism-trained staff (59.3%), social skills instruction (55.8%), life skills instruction (51.3%), and behavioral support (47.3%). Higher likelihood of needing social activity groups was associated with elevated emotional reactivity, higher language level, minoritized ethnicity, and lower household income. Greater need for specialized primary health care was associated with lower income, while the need for social and life skills instruction was associated with increased age and elevated dysphoria. Qualitative analysis identified 10 themes that converged and expanded quantitative findings by highlighting a pervasive shortage of individualized, goal-oriented services, common barriers to care, and the priority of developing centralized treatment settings that coordinate care throughout adulthood. This study identified pressing service needs for adolescents and adults with profound autism in the United States. These insights are crucial for improving the accessibility and quality of clinical care.

Family Cancer Caregiver Use of and Benefit from an Internet-delivered Insomnia Intervention: Results from a Single-Group Feasibility Trial.

Background: Cancer caregivers are more likely to report clinically significant symptoms of insomnia than cancer patients and the general population, yet research has been limited regarding cognitive-behavioral therapy for insomnia (CBT-I) among this population. Methods: To better understand cancer caregivers' engagement with and benefit from CBT-I, cancer caregivers were enrolled in a nonrandomized pilot feasibility trial of an evidence-based Internet-delivered insomnia program. Thirteen caregivers completed mixed-methods assessments prior to receiving the insomnia program and after the nine-week intervention period. Results: Compared to the five caregivers who did not complete any intervention Cores, the eight caregivers who completed at least one of the intervention Cores tended to report more sleep impairment (insomnia symptom severity; minutes of sleep onset latency and wake after sleep onset), less physical and emotional strain from caregiving, and less maladaptive sleep beliefs at the baseline assessment. These caregivers who used the program also showed large improvements in their insomnia symptoms. Caregivers' qualitative feedback about their experience with the program identified potential areas that might be modified to improve caregivers' engagement with and benefit from Internet-delivered insomnia programs. Conclusions: Findings suggest that family cancer caregivers can use and benefit from a fully-automated Internet-delivered CBT-I program, even without caregiving-specific tailoring. Further rigorous research is needed to better understand whether and how program modifications may allow more caregivers to initiate and engage with this program.

Effectiveness of interventions for informal caregivers of community-dwelling frail older adults: A systematic review and meta-analysis.

AIM: Systematic reviews on interventions for informal caregivers of community-dwelling frail older adults were published over a decade ago and they mistook frailty for other severe age-related conditions like disability and dementia. Therefore, this study aimed to systematically synthesize these interventions supporting these caregivers identified by an acknowledged frailty assessment instrument and to examine their effectiveness on caregiver-related outcomes. DESIGN: Systematic review and meta-analysis. DATA SOURCES: Fourteen electronic databases, grey literature and reference lists were systematically searched for randomized controlled trials (RCTs) and non-randomized controlled trials (NRCTs) from inception to November 3, 2023. METHODS: Methodology quality and risk of bias were assessed. Data were meta-analysed using the Comprehensive Meta-Analysis, version 3.0. Studies and outcomes unsuitable for meta-analysis were summarized by narrative syntheses. RESULTS: Four studies consisting of three RCTs and one NRCT were included involving 350 participants. Interventions for caregivers of frail older adults included multicomponent interventions (n = 3) and education intervention (n = 1). Interventions had a moderate effect on reducing depression and showed nonsignificant effects on caregiver burden, caregiving time or quality of life (QoL). The PEDro scores for RCTs ranged from 6 to 8, indicating good methodologic quality, but were all judged as high risk of bias. The NRCT reported all methodologic aspects and was at low risk of bias. CONCLUSIONS: Few studies focus on interventions targeting caregivers of frail older adults, and their effectiveness may vary by outcomes. This review suggested the potential benefits of these interventions in reducing caregivers' depression. IMPACT: The differential effectiveness by outcomes and high risk of bias of studies implicate that more rigorous studies are warranted.

Caregiver burden and its sociodemographic determinants in family caregivers of patients with schizophrenia attending a psychiatric tertiary hospital in South Africa.

Background: Chronic mental illnesses such as schizophrenia affect patients' functioning, making caregiving necessary although burdensome. Aim: This study aimed to determine caregiver burden and its sociodemographic determinants in family caregivers of patients with schizophrenia attending a Psychiatric Outpatient Department (POD). Setting: Tertiary hospital in Northern Pretoria, South Africa. Methods: In this cross-sectional study conducted over 3 months, 300 consecutive family caregivers who attended the POD were administered a 22-item Zarit Burden Interview (ZBI-22), which has a score of 0-88, with higher values indicating more burden. Their sociodemographic characteristics were ascertained. Linear and ordinal logistic regression analyses were performed to identify determinants or predictors of total and severe burdens, respectively. Results: Most caregivers were aged 46.0 ± 14 years, females (62%), parents (39%), of low-income status (93.7%), had secondary education (70%), resided with the patient (87%), and helped with all troublesome activities (95.3%). The median ZBI-22 score was 19.0 (interquartile range: 13.0-30.5). The determinants of both total and severe burdens were: caregiver age ≥ 50 years adjusted odds ratio (aOR): 2.55, confidence interval (CI): 1.49-4.36; residential area farther away from the hospital aOR: 1.76, CI: 1.3-2.99; increasing months of caregiving aOR: 1.0, CI: 1.001-1.009, p = 0.006; and not having another family member that needs care aOR: 0.43, CI: 0.24-0.78. Conclusion: Having mental healthcare facilities close to residential areas and assisting caregivers aged ≥ 50 years who have multiple family members who need care may alleviate the burden. Contribution: Predicting total and severe caregiver burdens contemporaneously is effective for identifying potential burden interventions.

'I'm proud of my son with CP': Cerebral palsy caregivers' experiences, Gauteng province.

Background: Caregivers of children with cerebral palsy (CP) are critical in the survival and well-being of their children. Despite the caregivers' particularly demanding responsibilities, literature on their experiences is limited. Objectives: This study explored the caregivers' experiences of providing care to children with CP. Method: An explorative qualitative study design using semi-structured interviews was employed. All interviews were audio-recorded, transcribed verbatim and analysed guided by Colaizzi's seven-step methodology. Results: Two themes emerged: the challenges in caregiving and positive experiences of providing care. Caregivers faced financial, psychological, social and physical challenges such as stigmatisation, a lack of work accommodations, time constraints due to demands of providing care, strained family relations, isolation, exclusion, emotional and physical exhaustion in their caregiving role. Despite the challenges, they also had fulfilling, positive experiences. Caregivers became more resilient, some relationships were strengthened and awareness of the CP condition increased over time. Conclusion: Caring for a child with CP is challenging. Cerebral palsy is a permanent disability; therefore, a holistic, long-term perspective to supporting caregivers is necessary to ensure they can care for their children adequately. Contribution: There is a need for various support structures for caregivers to lessen the burden of care. It is necessary to establish the relationships between the support structures available and the way that these structures are viewed and consequently utilised by the caregivers. This study highlights the experiences and needs of caregivers to inform stakeholders on intervention strategies.

Is caregiver sleep quality an important clinical issue?

Sleep quality is directly related to general health and quality of life. Caregivers' sleep disturbances affect not only their own health, but also the optimal care of their patients, with negative consequences such as neglect and medication errors. This study was conducted prospectively in the palliative care unit. The participants were divided into two groups: the caregivers and the control group. The caregiver groups were categorized into two subgroups: family and paid caregivers. The sleep quality of the caregivers was evaluated with the Pittsburgh Sleep Quality Index (PSQI). The demographics, body mass index, educational level, the presence of chronic diseases and medications, need for spiritual support, daytime sleepiness, duration of caregiving, nighttime awakening, and tea/coffee consumption were recorded. The study included 250 caregivers (female: 74.8%, mean age: 50.6 ± 12.1) and 103 control group members. Family caregivers significantly had an advanced age, lower educational level, more chronic diseases, and medications, need for spiritual support, and longer duration of caregiving compared to the paid caregivers (p = 0.018, < 0.001, 0.001, 0.005, < 0.001, and 0.003, respectively). The total PSQI scores of caregivers were significantly higher in the FDR, family group, females, those with need of spiritual support, and tea/coffee consumption close to bedtime (p = 0.002 < 0.004. 0.026. < 0.001, and 0.022, respectively). The fact that the sleep quality of family group caregivers is worse than that of paid caregivers may prevent healthy medical service delivery. The provision of care by paid professional caregivers will improve quality of care and quality of life.

Efficacy of COMPAs, an App Designed to Support Communication Between Persons Living With Dementia in Long-Term Care Settings and Their Caregivers: Mixed Methods Implementation Study.

BACKGROUND: Persons living with dementia experience autonomy loss and require caregiver support on a daily basis. Dementia involves a gradual decline in communication skills, leading to fewer interactions and isolation for both people living with dementia and their caregivers, negatively impacting the quality of life for both members of the dyad. The resulting stress and burden on caregivers make them particularly susceptible to burnout. OBJECTIVE: This study aims to examine the efficacy of Communication Proches Aidants (COMPAs), an app designed following the principles of person-centered and emotional communication, which is intended to improve well-being in persons living with dementia and caregivers and reduce caregiver burden. METHODS: In this implementation study, volunteer caregivers in 2 long-term care facilities (n=17) were trained in using COMPAs and strategies to improve communication with persons living with dementia. Qualitative and quantitative analyses, semistructured interviews, and questionnaires were completed before and after 8 weeks of intervention with COMPAs. RESULTS: Semistructured interviews revealed that all caregivers perceived a positive impact following COMPAs interventions, namely, improved quality of communication and quality of life among persons living with dementia and caregivers. Improved quality of life was also supported by a statistically significant reduction in the General Health Questionnaire-12 scores (caregivers who improved: 9/17, 53%; z=2.537; P=.01). COMPAs interventions were also associated with a statistically significant increased feeling of personal accomplishment (caregivers improved: 11/17, 65%; t15=2.430; P=.03; d=0.61 [medium effect size]). CONCLUSIONS: COMPAs intervention improved well-being in persons living with dementia and their caregivers by developing person-centered communication within the dyad, increasing empathy, and reducing burden in caregivers although most caregivers were unfamiliar with technology. The results hold promise for COMPAs interventions in long-term care settings. Larger group-controlled studies with different populations, in different contexts, and at different stages of dementia will provide a clearer picture of the benefits of COMPAs interventions.

Capturing Home Care Information Management and Communication Processes Among Caregivers of Older Adults: Qualitative Study to Inform Technology Design.

BACKGROUND: The demand for complex home care is increasing with the growing aging population and the ongoing COVID-19 pandemic. Family and hired caregivers play a critical role in providing care for individuals with complex home care needs. However, there are significant gaps in research informing the design of complex home care technologies that consider the experiences of family and hired caregivers collectively. OBJECTIVE: The objective of this study was to explore the health documentation and communication experiences of family and hired caregivers to inform the design and adoption of new technologies for complex home care. METHODS: The research involved semistructured interviews with 15 caregivers, including family and hired caregivers, each of whom was caring for an older adult with complex medical needs in their home in Ontario, Canada. Due to COVID-19-related protection measures, the interviews were conducted via Teams (Microsoft Corp). The interview guide was informed by the cognitive work analysis framework, and the interview was conducted using storytelling principles of narrative medicine to enhance knowledge. Inductive thematic analysis was used to code the data and develop themes. RESULTS: Three main themes were developed. The first theme described how participants were continually updating the caregiver team, which captured how health information, including their communication motivations and intentions, was shared among family and hired caregiver participants. The subthemes included binder-based health documentation, digital health documentation, and communication practices beyond the binder. The second theme described how participants were learning to improve care and decision-making, which captured how they acted on information from various sources to provide care. The subthemes included developing expertise as a family caregiver and tailoring expertise as a hired caregiver. The third theme described how participants experienced conflicts within caregiver teams, which captured the different struggles arising from, and the causes of, breakdowns in communication and coordination between family and hired caregiver participants. The subthemes included 2-way communication and trusting the caregiver team. CONCLUSIONS: This study highlights the health information communication and coordination challenges and experiences that family and hired caregivers face in complex home care settings for older adults. Given the challenges of this work domain, there is an opportunity for appropriate digital technology design to improve complex home care. When designing complex home care technologies, it will be critical to include the overlapping and disparate perspectives of family and hired caregivers collectively providing home care for older adults with complex needs to support all caregivers in their vital roles.

Outcomes Among Mexican American and Non-Hispanic White Informal Stroke Caregivers.

BACKGROUND: Informal home care is prevalent among Mexican American stroke survivors, but data on the impact on caregivers are not available. The aim was to assess ethnic differences in informal stroke caregiving and caregiver outcomes at 90 days poststroke. METHODS: Informal caregivers were recruited from the population-based Brain Attack Surveillance in Corpus Christi Project (2019-2023), conducted in a bi-ethnic community in Texas. Caregivers of community-dwelling stroke survivors who were not cognitively impaired and not employed by a formal caregiving agency were interviewed. Interviews included sociodemographics, dyad characteristics, Modified Caregiver Strain Index (range 0-26, higher more positive), Positive Aspects of Caregiving scale (range, 5-45, higher more), Patient Health Questionnaire-8 (range, 0-30, higher worse), and PROMIS (Patient-Reported Outcomes Measurement Information System)-10 physical (range, 16.2-67.7, higher better) and mental health (range, 21.2-67.6, higher better) summary scores. Stroke survivor data was from interviews and medical records. Propensity score methods were used to balance caregiver and patient factors among Mexican American and Non-Hispanic White caregivers by fitting a model with ethnicity of caregiver as the outcome and predictors being caregiver sociodemographics, patient-caregiver dyad characteristics, and patient sociodemographics and functional disability. Propensity scores were included as a covariate in regression models, considering the association between ethnicity and outcomes. RESULTS: Mexican American caregivers were younger, more likely female, and more likely a child of the stroke survivor than Non-Hispanic White caregivers. Mexican American caregiver ethnicity was associated with less caregiver strain (ß, -1.87 [95% CI, -3.51 to -0.22]) and depressive symptoms (ß, -2.02 [95% CI, -3.41 to -0.64]) and more favorable mental health (ß, 4.90 [95% CI, 2.49-7.31]) and positive aspects of caregiving (ß, 3.29 [95% CI, 1.35-5.23]) but not associated with physical health. CONCLUSIONS: Understanding the mechanisms behind more favorable caregiver outcomes in Mexican American people may aid in the design of culturally sensitive interventions to improve both caregiver and stroke survivor outcomes, potentially across all race and ethnic groups.

Emergency management of pediatric epileptic seizures in non-hospital settings in Japan.

OBJECTIVE: To assess the current management of pediatric epileptic seizures in non-hospital settings and the efficacy of early therapeutic intervention with rescue medication in Japan. METHODS: This descriptive cross-sectional study was based on an online survey of caregivers of pediatric patients with epilepsy. The survey consisted of questions regarding seizure frequency and symptoms, the use of rescue medication, and emergency medical care. Statistical analyses were performed to evaluate the association between the time to rescue medication administration and seizure resolution. RESULTS: Responses were obtained from 1147 caregivers of pediatric patients with epilepsy. Of the patients described in the study, 98.5 % had been prescribed anti-seizure medication, 95.3 % had more than a few seizures per year, and 90.3 % used rescue medication. The time to seizure resolution was significantly reduced when rescue medication was administered early. Overall, 28.4 % of the patients required emergency transport to hospital, which increased disruption to the lives of caregivers, who returned to their normal activities after an average of 17.2 h. CONCLUSION: Emergency transport of patients places a significant burden on caregivers. Earlier administration of rescue medications is associated with a reduction in the need for emergency room visits, which reduces the burden on the patient as well as the caregiver.