A qualitative study on emotional labor and work-family conflictin caregivers working in nursing homes / Un estudio cualitativo sobre el trabajo emocional y el conflicto trabajo-familia en cuidadores que trabajan en residencias de ancianos

A pesar de la evidencia que sugiere que el trabajo de cuidado implica la realización de trabajo emocional y experiencias de conflicto trabajo-familia, la relación de estas dos experiencias de trabajo sigue sin ser examinada. El presente estudio tiene como objetivo explorar las experiencias de desempeño del trabajo emocional y el conflicto trabajo-familia y sus vínculos entre los cuidadores que trabajan en hogares de ancianos. Para abordar la pregunta de investigación, utilizamos entrevistas semiestructuradas con una muestra de 24 mujeres cuidadoras que trabajan a tiempo completo en residencias de ancianos en el centro y norte de Portugal. Los resultados revelaron la presencia de trabajo emocional, Conflicto Trabajo-Familia y un impacto del trabajo emocional en Conflicto Trabajo-Familia basado en la tensión. En general, los resultados sugirieron que el trabajo emocional tiene efectos en Conflicto Trabajo-Familia, lo que apunta a la necesidad de que los directores de las instituciones de cuidado de ancianos consideren formas de reducir estos efectos nocivos en los trabajadores.(AU)

Despite evidence suggesting that care work involves the perfor-mance of emotional labor an experience of work-family conflict, the rela-tion of these two work experiences remain under-examined. The present study aims to fill this gap by exploring the experiences of performing emo-tional labor and work-family conflict and their links among caregivers working in nursing homes. To address the research question, we used semi-structured interviews with a sample of 24 female caregivers working full-time in nursing homes in the center and north of Portugal. The results revealed the presence of emotional labor, work-family conflict, and an im-pact of emotional labor in strain-based work-family conflict. Overall, the results suggested that emotional labor has effects on work-family conflict, pointing to the need that directors of elderly care institutions should con-sider ways of reducing these harmful effects on worker.(AU)

Quality of life in caregivers of aged stroke survivors in southern Brazil: Arandomized clinical trial / Qualidade de vida de cuidadores de idosos sobreviventes de AVC no sul do Brasil: Ensaio clínico randomizado / Calidad de vida en cuidadores de adultos mayores sobrevivientes de accidentes cerebrovasculares en el sur de Brasil: Ensayo clínico aleatorizado

Abstract Objective: to evaluate the effect of nursing home care interventions on the quality of life in family caregivers of aged stroke survivors. Method: a Randomized Clinical Trial, blinded for outcome evaluation. Forty-eighty family caregivers of aged stroke survivors participated in the study. The Intervention Group received three home visits by nurses one month after hospital discharge to provide stroke-related education (i.e., how to access health services and perform care activities) and emotional support. The Control Group received the usual guidance from the health services. Quality of life was assessed using the World Health Organization Quality of Life Assessment (WHOQOL-BREF) instrument and the Old Module(WHOQOL-OLD) 1 week, 2 months, and 1 year after discharge. Results: the caregivers were mainly women, children, or spouses. The caregivers in the Intervention Group and Control Group did not significantly differ in terms of their Overall Quality of Life at baseline. There was no interaction effect between group allocation and Overall Quality of Life(p=0.625) over time. However, there was an interaction effect for Social Relations(p=0.019) and Autonomy (p=0.004). Conclusion: the intervention exerted a statistically significant effect on the quality of life of family caregivers with respect to social relationships and autonomy. Trial registration: NCT02807012.

Resumo Objetivo: avaliar o efeito de intervenção educativa domiciliar de enfermagem na qualidade de vida de cuidadores familiares de idosos sobreviventes de acidente vascular cerebral (AVC). Método: Ensaio Clínico Randomizado, cego para avaliação de resultados. Quarenta e oito cuidadores familiares de idosos sobreviventes de AVC participaram do estudo. O Grupo de Intervenção recebeu três visitas domiciliares de enfermeiros, um mês após a alta hospitalar, para fornecer educação relacionada ao AVC (como acessar os serviços de saúde e realizar atividades de cuidado) e apoio emocional. O Grupo Controle recebeu as orientações habituais dos serviços de saúde. A qualidade de vida foi avaliada usando o instrumento Avaliação da Qualidade de Vida da Organização Mundial da Saúde (WHOQOL-BREF) e o Módulo Old (WHOQOL-OLD) em 1 semana, 2 meses e 1 ano após a alta. Resultados: os cuidadores eram principalmente mulheres, filhos ou cônjuges. Os cuidadores do Grupo Intervenção e do Grupo Controle não diferiram significativamente em termos de Qualidade de Vida Geral no início do estudo. Não houve efeito de interação entre a alocação do grupo e a Qualidade de Vida Geral (p=0,625) ao longo do tempo. No entanto, houve efeito de interação para Relações Sociais (p=0,019) e Autonomia (p=0,004). Conclusão: a intervenção apresentou efeito estatisticamente significativo na qualidade de vida dos cuidadores familiares no que diz respeito às relações sociais e autonomia. Registro do ensaio clínico: NCT02807012.

Resumen Objetivo: evaluar el efecto de intervenciones de atención domiciliaria de enfermería sobre la calidad de vida en cuidadores familiares de adultos mayores sobrevivientes de accidentes cerebrovasculares. Método: Ensayo Clínico Aleatorizado, cegado para la evaluación de los desenlaces. Los participantes del estudio fueron 48cuidadores familiares de adultos mayores sobrevivientes de accidentes cerebrovasculares (ACV). El Grupo Intervención recibió tres visitas domiciliarias a cargo de enfermeros un mes después del alta hospitalaria, en las que se les ofreció instrucción relacionada con ACV (es decir, cómo acceder a los servicios de salud y realizar las actividades inherentes a los cuidados) y apoyo emocional. Al Grupo Control se le brindó la orientación habitual de los servicios de salud. La calidad de vida se evaluó mediante el instrumento World Health Organization Quality of Life Assessment (WHOQOL-BREF) y el módulo Old(WHOQOL-OLD) 1semana, 2meses y 1año después del alta. Resultados: en su mayoría, los cuidadores fueron mujeres, hijos o cónyuges. Los cuidadores de los grupos Intervención y Control no presentaron diferencias significativas en términos de su Calidad de Vida general de base. La intervención no ejerció ningún efecto entre la asignación a los grupos y la Calidad de Vida general(p=0,625) con el transcurso del tiempo. Sin embargo, la intervención sí tuvo efecto sobre las Relaciones Sociales (p=0,019) y la Autonomía(p=0,004). Conclusión: la intervención ejerció un efecto estadísticamente significativo sobre la calidad de vida de los cuidadores familiares con respecto a las relaciones sociales y a la autonomía. Registro del ensayo: NCT02807012.

Decisional conflict, caregiver mastery, and depression among Chinese parental caregivers of children with leukemia.

BACKGROUND: Informal caregivers of children with leukemia can be emotionally and psychiatrically vulnerable when facing difficult treatment decisions (e.g., chemotherapy, targeted therapy, radiation, transplantation). A common behavioral manifestation of decisional conflict is the verbalized expression of uncertainty about which medical treatment plan to take. The study aims to examine the associations between decisional conflict, mastery, and depressive symptoms among parental caregivers of children with leukemia in China. It explored the mediating role of mastery in the relationship. METHODS: A cross-sectional survey design was adopted. A total of 386 parental caregivers were recruited, and 325 valid questionnaires remained. The mean age of caregivers was 37.7 years, and 61.5% caregivers were female. We used Question Format Decisional Conflict Scale to assess decisional conflict, Pearlin's Mastery Scale to assess mastery, and Center for Epidemiological Studies Depression 10 to assess depressive symptoms. We used mediation analyses to test the mediating effect of mastery. RESULTS: The total score of decisional conflict scale, along with its dimensions of uncertainty, support, and effective decision were found negatively associated with depressive symptoms. In contrast, the dimension of information and value were not significantly associated with depressive symptoms. Mediation analyses demonstrated the direct effects of overall decisional conflict and uncertainly were fully mediated by mastery, while the direct effect of support and effective decision were partially mediated. CONCLUSIONS: Efforts should be made to alleviate parental caregivers' decisional conflict and enhance sense of mastery. Particular attention should be paid to the psycho-social support to relieve uncertainties and ineffectiveness in decision making.

Development of the Pediatric Hospitalization Admission Survey of Experience (PHASE) Measure.

BACKGROUND: Although significant research is devoted to transitions of care at discharge, few measures assess the quality of transitions into the hospital. Our objective was to develop a caregiver-reported quality measure to evaluate the pediatric hospital admission experience. METHODS: Measure development included: (1) adapting items from existing instruments; (2) an expert-consensus process to prioritize survey items; (3) cognitive pretesting with caregivers (n = 16); and (4) pilot testing revised items (n = 27). Subsequently, the survey was administered to caregivers at 2 children's hospitals and 1 general hospital from February 2020 through November 2021. Item reduction statistics and exploratory factor analysis were performed followed by confirmatory factor analysis. Domain scores were calculated using a top-box approach. Known-group validity and indices of model fit were evaluated. RESULTS: The initial survey included 25 items completed by 910 caregivers. Following item reduction and the exploratory factor analysis, 14 items were mapped to 4 domains: (1) Patient and Family Engagement, (2) Information Sharing, (3) Effectiveness of Care Delivery, and (4) Timeliness of Care. The confirmatory factor analysis and validity testing supported the factor structure. Domain scores ranged from 49% (95% confidence interval, 46-53) for Timelines of Care to 81% (95% confidence interval, 65-84) for Patient and Family Engagement, with significant differences between general and children's hospitals in Information Sharing and Effectiveness of Care Delivery. CONCLUSIONS: A 4-domain caregiver-reported hospital admission experience measure demonstrated acceptable validity and psychometric properties across children's and general hospitals. This measure can be used to evaluate the quality of transitions into the hospital and to focus quality improvement efforts.

Public health palliative care interventions that enable communities to support people who are dying and their carers: a scoping review of studies that assess person-centered outcomes.

Background: Public health palliative care views communities as an integral part of care delivery at the end of life. This community-provider partnership approach has the potential to improve end-of-life care for people who are dying and their carers. Objective: To identify and appraise the current literature related to public health interventions that enable communities to support people who are dying and their carers. Methods: A scoping review was conducted, applying Arksey and O'Malley's methods. Data was extracted and synthesized using narrative techniques, and results are reported using PRISMA guidelines. Results: The search yielded 2,902 results. Eighteen met inclusion criteria and were included in the analysis. Interventions were categorized according to their target population: people with life-limiting illness (ex. facilitated social interaction, helplines and guided discussions about death and dying); carers (ex. social support mapping, psychoeducation, and community resource identification and facilitation); or dyads (ex. reminiscence activities, practical and emotional support from volunteers, online modules to bolster coping mechanisms). Public health palliative care approaches were delivered by key community stakeholders such as community health workers, volunteers, peer mentors, and pre-established support groups. Despite reported challenges in identifying appropriate tools to measure effectiveness, studies report improvement in quality of life, loneliness, social support, stress and self-efficacy. Conclusion: We found that community-engaged palliative care interventions can lead to appreciable changes in various outcomes, though it was difficult to determine in which contexts this approach works best because of the dearth of contextual information reported. Based on the varied design and implementation strategies, it is clear that no one method for enhancing end of life care will benefit all communities and it is crucial to engage community members at all stages of the design and implementation process. Future research should be grounded in appropriate theory, describe contextual differences in these communities, and should specifically examine how demographics, resource availability, and social capital might impact the design, implementation, and results of public health palliative care interventions.

Spiritual growth, sense of coherence and self-efficacy of family caregivers of people with disabilities.

OBJECTIVE: Analyze the spiritual growth of family caregivers of people with severe disabilities who reside in the Metropolitan District of Quito and identify the cognitive-affective factors, bio-sociocultural characteristics and care characteristics that model it. METHOD: Cross-sectional study, carried out during the second semester of 2021, probabilistic sample of 223 caregivers residing in Quito-Ecuador. Descriptive statistics, correlation coefficients and regression were applied. RESULTS: 49.8% perceived a high spiritual growth. This correlated with the manageability dimension of the sense of coherence and with the self-efficacy of care. Some cognitive-affective factors, bio-sociocultural characteristics and care characteristics explained 25% of its variation. CONCLUSION: The results showed a frequent practice of actions that promote spiritual growth, self-efficacy of care is highlighted as an important protective factor, these results can serve as a basis for planning interventions towards the evaluation and development of spiritual growth in search of a healthy lifestyle. in this vulnerable population.

Migrant women caregivers' experiences in end-of-life formal care.

OBJECTIVE: To describe and understand the experience of Latin American migrant women as caregivers of elderly people in situations of advanced illness and end of life. METHOD: Qualitative study using Gadamer's hermeneutic phenomenology. Data were collected in 2019 through 9 semi-structured interviews with Latin American women caregivers, who had cared for people at the end of life, in the Province of Granada (Spain). RESULTS: Two themes emerged: "Migrant caregiver at the end of life" and "And now, what should I do?": the impact of the loss at the economic, emotional and labor level. CONCLUSION: Care during the end of life of the cared person generates an additional overload to the situation of migrant women. The experience of this stage is related to the bond with the persons cared and their families, which may affect the development of complicated grief and personal problems related to the loss of employment and the absence of economic support.

The experiences of patients with advanced heart failure, family carers, and health professionals with palliative care services: a secondary reflexive thematic analysis of longitudinal interview data.

BACKGROUND: Patients with heart failure have significant palliative care needs, but few are offered palliative care. Understanding the experiences of delivering and receiving palliative care from different perspectives can provide insight into the mechanisms of successful palliative care integration. There is limited research that explores multi-perspective and longitudinal experiences with palliative care provision. This study aimed to explore the longitudinal experiences of patients with heart failure, family carers, and health professionals with palliative care services. METHODS: A secondary analysis of 20 qualitative three-month apart interviews with patients with heart failure and family carers recruited from three community palliative care services in the UK. In addition, four group interviews with health professionals from four different services were analysed. Data were analysed using 'reflexive thematic' analysis. Results were explored through the lens of Normalisation Process Theory. RESULTS: Four themes were generated: Impact of heart failure, Coping and support, Recognising palliative phase, and Coordination of care. The impact of heart failure on patients and families was evident in several dimensions: physical, psychological, social, and financial. Patients developed different coping strategies and received most support from their families. Although health professionals endeavoured to support the patients and families, this was sometimes lacking. Health professionals found it difficult to recognise the palliative phase and when to initiate palliative care conversations. In turn, patients and family carers asked for better communication, collaboration, and care coordination along the whole disease trajectory. CONCLUSIONS: The study provided broad insight into the experiences of patients, family carers, and health professionals with palliative care. It showed the impact of heart failure on patients and their families, how they cope, and how they could be supported to address their palliative care needs. The study findings can help researchers and healthcare professionals to design palliative care interventions focusing on the perceived care needs of patients and families.

Dementia care navigation: A systematic review on different service types and their prevalence.

BACKGROUND: Dementia Care Navigators (DCNs) are professionals without clinical training, who provide individualised emotional and practical support to people living with dementia, working alongside clinical services. Navigator services have been implemented but the service offered vary without a consistent overview provided. The aim of this narrative systematic review was to describe and compare existing service formats, and to synthesise evidence regarding their implementation and impacts. METHODS: The review was registered on PROSPERO [CRD42021292518]. Three electronic databases were searched and included studies reported on a DCN service, defined as a service in which non-clinically trained workers provide personalised advice and support to people with dementia and/or carers in the community. Two independent reviewers screened abstracts and titles and read through full papers for inclusion. Risk of bias was assessed using the Standard Quality Assessment QualSyst. RESULTS: We included 14 papers reporting on six studies. All services were US-based and only varied by integration and training provided. Studies reported different degrees of impact on service utilisation and on symptoms and mental well-being of people with dementia and their carers, with too little evidence to draw substantial/meaningful conclusions and studies employing different outcome measures. One study evidenced greater impacts on people with more advanced dementia compared to earlier stages. CONCLUSIONS: DCN services have the potential to effectively provide non-clinical support to people with dementia and carers from the point of diagnosis. Further research from countries other than the USA, focusing on the impact on social care and social support service access and utilisation, and utilising similar established outcome measures are required.

A narrative inquiry into caregivers' experiences and management after a relative's suicide attempt in a rural community in Northeast Thailand.

Suicide attempts have long-term negative consequences for families. This study reports a narrative inquiry using a social constructionist perspective to investigate how caregivers in rural northeast Thailand describe their experiences and management strategies following a family member's suicide attempt. From thematic analysis, three themes emerged: (1) distress and embarrassment, (2) managing to prevent re-attempts, and (3) letting go and moving on with my life. The implications discussed for mental health professionals include recognizing caregivers' experiences and developing more effective ways to manage the risk of future attempts.

Resilience in the context of dementia family caregiver mental health: A concept analysis.

Resilience has been identified as a key concept for dementia family caregiver mental health; however, the concept is not well defined. A concept analysis examining dementia caregiver resilience was conducted using Rodger's Evolutionary Method. The aim of this concept analysis was to describe the historical perspective, attributes, antecedents, and consequences of resilience as it relates to dementia caregiver mental health. Key attributes of dementia caregiver resilience were acceptance, coping strategies, social support, self-appraisal, and spirituality. The results from this concept analysis provide the foundation for the development of resilience-based interventions to support the well-being of dementia family caregivers.

Supporting the wellbeing of caregivers of children on the autism spectrum: A qualitative report on experiences of attending group dance movement psychotherapy.

Caregivers of children on the autism spectrum can carry a significant amount of practical, psychological, and social demands and responsibilities that are highly stressful. A group Dance Movement Psychotherapy (DMP) was offered to facilitate the wellbeing of caregivers. In this article, we explore the experiences of the therapeutic processes and outcomes of the intervention from the perspectives of caregivers, the therapist, and the researcher/co-facilitator. METHOD: Four clusters of caregivers of children on the autism spectrum (N = 20 Mean age = 39.25 years) took part in five group DMP sessions lasting 90 minutes delivered across two special educational needs settings. Twenty reflective focus groups took place in total, with each taking place at the end of each DMP session. Participants were invited to capture their experiences through arts-based drawings, while therapist and participating researcher/co-facilitator kept session-based notes and arts-based reflections. These arts-based and verbal data were grouped to generate themes. RESULTS: Six overarching themes emerged from the arts-based and verbal data with multiple subthemes that describe the contribution of DMP towards promoting caregivers' wellbeing and identified key challenges in implementing the intervention. These themes are: (1) Beholding within and around; (2) Reflecting and reinforcing strengths; (3) Exchanging views; (4) Looking back and carrying forward; (5) Core benefits; and (6) Challenges to engage in DMP. CONCLUSION: Caregivers talked about their experience of participating in the DMP groups as positive and acknowledged the helpful and challenging aspects of taking part in DMP intervention. They appreciated the creative and expressive nature of the intervention to promote their emotional and social wellbeing. The challenges identified in the study indicate that further awareness is needed within school environments about the contribution arts therapies can make towards establishing appropriate and sustainable interventions for caregivers.

European Projects for Patients with Dementia and Their Caregivers.

As we all know there is no treatment that can stop or delay the progression of dementia. The treatment we use is only symptomatic. EFNS (European Federation of Neurological Societies) recommendations for dementia prevention by Sorbi et al. (2012) concluded that there is no treatment, no lifestyle, which could have an effect on prevention or delay of onset of different forms of dementia until today. The future studies in prevention must recruit younger people, larger sample, and for longer period. The last 10 years we have run, in collaboration with organizations in different European countries, many projects in order to support patients with neurodegenerative diseases, mainly patients with dementia and their caregivers. The first project was a 2-year prospective cohort study of antidementia drug non-persistency in mild-to-moderate Alzheimer's disease (AD) in Europe: predictors of discontinuation and switch in the ICTUS (Impact of Cholinergic Treatment USe) study, an FP5 project with 1380 patients. Five studies were published. The second project was DESCRIPA study, an FP5 project to DEvelopment of Screening guidelines and clinical CRIteria for Predementia Alzheimer's disease, with 881 patients with mild cognitive impairment (MCI). LLM (Long Lasting Memories) and VRADA (A virtual reality application for the exercise of dementia and Alzheimer patients) are two projects that include body and cognitive exercise for health for the elderly and patients with mild cognitive impairment. The next is the RECAGE (REspectful Caring for the AGitated Elderly) project (Horizon 2020), a prospective cohort study for coping with behavioral and psychological symptoms of dementia. With six European universities we finished a very interesting FP6 project, the AddNeuroMed one, which gives even now information about the progression of normal elderly MCI and AD patients, in collaboration with other consortia. A very interesting Innovative Medicines Initiative (IMI) project about digital biomarkers was entitled Remote Assessment of Disease and Relapse-Alzheimer's Disease (RADAR project). The main goal of this project was the development and validation of technology-enabled, quantitative and sensitive measures of functional decline in people with early-stage AD. A running project is an Erasmus+ one in the higher education field, "Genetic counseling in European universities: The case of neurodegenerative diseases" (GECONEU project). The target of this study is to develop an online course for university students focusing on genetic counseling, and support people and society to better understand the aims of genetic testing and the usefulness of genetic counseling by involving students in an innovative learning and teaching setting. AD-gaming, BRIDGE, iCONNECT (Intergenerational CONtact between studeNts and people with dEmentia through CreaTive education), E.L.So.M.C.I (English Lessons with the Use of Songs for People with Mild Cognitive Impairment), Games4CoSkills, and De-Sign are all Erasmus+ projects that aim to improve the quality of life of patients with MCI or dementia. Story2remember, Dementia right, ASPAD (Augmentation of the Support of Patients suffering from Alzheimer's Disease and their caregivers), INFOCARE (Supporting Informal Caregivers of People with Dementia), S.IN.CA.L.A (Supporting Informal Carers: A Whole-Family and Life course Approach), and PIA (Peer support workers as an Innovative force in Advocacy in dementia care) are all Erasmus+ projects for training and supporting caregivers of patients with dementia.

Investigating the Needs of Patients Suffering from Chronic Diseases: A Cross-Sectional Study.

INTRODUCTION: Chronic diseases represent a huge challenge for the health systems globally due to the rapidly increasing number of patients and their long-term need for healthcare. The purpose of this study was to investigate the needs of patients suffering from chronic diseases. METHODOLOGY: This is a cross-sectional study. The study population consisted of 840 adults with chronic diseases. The data collection was done with an improvised needs survey questionnaire, which included 56 questions. Statistical analyses were performed using IBM SPSS Statistics for Windows, v.25.0, statistical significance being considered at p < 0.05. RESULTS: The main diseases of the patients were chronic renal failure (22.6%), multiple sclerosis (19%), cancer (19%), diabetes mellitus (7.1%), dementia (6%), and chronic obstructive pulmonary disease (6%). The majority of patients (82.1%) were sick for more than 24 months. Patients seek information from health professionals (4.07 ± 1.4), feel tired (4.05 ± 1.4), have to share their feelings with other family members (4.01 ± 1.4), feel anxious about the future (3.94 ± 1.3), and feel out of control (3.80 ± 1.5). CONCLUSIONS: Patients with chronic diseases suffer from numerous physical, mental, emotional, and cognitive problems. Paying attention to the unmet needs of patients could have beneficial effects on both patients and their caregivers.

Potential Facilitators of and Barriers to Implementing the MINI Robot in Community-Based Meeting Centers for People With Dementia and Their Carers in the Netherlands and Spain: Explorative Qualitative Study.

BACKGROUND: Social robots, as a form of digital health technologies, are used to support emotional, cognitive, and physical care and have shown promising outcomes in enhancing social well-being in people with dementia (PwD) by boosting emotions, social interactions, and activity participation. OBJECTIVE: The goal is to investigate the attitude of stakeholders and potential facilitators and the barriers to implementing the social robot MINI in community-based meeting centers (MCs) for PwD and carers in the Netherlands and Spain. METHODS: Based on the British Medical Research Council guidance for process evaluation of the implementation of complex interventions and the model for tracing the facilitators of and barriers to the adaptive implementation of innovations in dementia care, an explorative qualitative study was conducted. Following the introduction of the MINI robot, 11 stakeholders were interviewed in 3 MCs in the Netherlands and 1 in Spain, as well as stakeholders in health and welfare organizations in both countries. In addition, 12 adults with dementia participated in focus groups. The data were thematically analyzed and narratively described. RESULTS: Overall, the stakeholder opinion and interest in the MINI robot were positive. The most important (expected) facilitating factors mentioned by stakeholders appeared to be human resources, funding, the impact of the MINI robot on the users and programs of the MCs, characteristics of the innovation, and collaboration with other care and welfare organizations. However, the (expected) barriers mentioned concerned the physical context and functionalities of the MINI robot, the user context, and MC activity policies. CONCLUSIONS: The findings will inform professional stakeholders, such as MC directors and managers, as well as care and welfare organizations, on the practicality of using the MINI robot in MCs. Furthermore, our research will aid MINI robot developers in tailoring its features to PwD's preferences and demands and MC policies, which will contribute to the MINI robot's effective adoption and deployment.

Burden of care and coping strategies among informal caregivers of people with behavioral and psychological symptoms of dementia in rural south-western Uganda.

BACKGROUND: Caregiving is a draining role that inflicts a significant level of burden upon caregivers for older people with Behavioral and Psychological Symptoms of Dementia (BPSD). Caregiver burden is associated with poor health outcomes for both the people with BPSD and their caregivers. This study explored the burden of care and coping strategies used by informal caregivers of older people with BPSD in rural Southwestern Uganda. METHODS: This was a qualitative study among informal caregivers of older people with BPSD in Rubanda and Rukiga districts. We conducted in-depth interviews with a purposive sample of 27 caregivers using an interview guide. The interviews were conducted in the local language, audio recorded, transcribed, translated into English, and thematically analyzed. RESULTS: There were two major themes: caregiver burden and coping strategies. Caregiver burden was described as financial, physical, psychological and social. Caregivers mainly used emotion-focused coping strategies (religious coping, acceptance and emotional support seeking). Problem-focused coping strategies (planning) and dysfunctional coping strategies (self-distraction) were used to a lesser extent. CONCLUSION: Informal caregivers of people with BPSD adopted both emotional and problem-focused coping strategies to cope with the burden of care for people with BPSD. Such coping strategies seemed to lighten the burden of caring, in the long motivating the caregivers to continue with the caring role.

"We can tell a good teacher who cares, understands, and can be confidential about it": youth and caregiver experiences with HIV disclosure to schools in Kenya.

Introduction: Disclosure of one's HIV status to others is often difficult due to the fear of stigma. However, disclosure may facilitate receiving social support. Many youth living with HIV (YLH) are enrolled in school as better treatments have improved the health and survival of children with HIV. There is no structured process for disclosure at school for YLH and their caregivers. We sought to understand school disclosure experiences among YLH and their caregivers and assess the need for the development of a structured disclosure intervention tailored to school settings. Methods: We conducted in-depth qualitative interviews with 28 school-going YLH aged 14-19 years and 24 caregivers of YLH. Interviews were conducted in English and Swahili, transcribed, and translated. The transcripts were uploaded to Atlas.ti 9 for thematic analysis. Results: YLH and caregivers clearly articulated the benefits of disclosing to school staff. Disclosure to school staff was seen as the first step to receiving support for medication storage, adherence, and clinic attendance. However, disclosure was also perceived to be a very complicated and stressful process. Fear of stigma drove caregivers and YLH toward careful planning of when and to whom to disclose. Distrust of school staff was a significant barrier to disclosure, even among those who clearly articulated the benefits of disclosure. Disclosure to school staff largely resulted in positive experiences; the immediate reactions were positive or somewhat neutral and confidentiality was upheld. The anticipated benefits of practical and emotional support were demonstrated by the school staff to whom the HIV information was disclosed. Conclusion: Disclosure of HIV status to someone at school is necessary to receive support for medication adherence. Stigma and the lack of structured support for the disclosure process at school often hinder YLH and their caregivers from disclosing. YLH would benefit from better support at schools, including policies to facilitate disclosure that address the caregiver and YLH's fear of stigma and loss of confidentiality. School policies could also provide guidance on whom to disclose to and available post-disclosure support.

Dataset on the psychosocial impact in families with children with developmental and epileptic encephalopathies.

Caring for children with developmental and epileptic encephalopathies (DEE) can be challenging for primary caregivers due to the complexity of the condition and the need to provide ongoing care. This has a psychosocial impact on their quality of life, including increased stress, anxiety, and depression, as well as an impact on their support network, work, and relationship with the affected child. It is important that caregivers receive help to manage the psychosocial impact of caring for a child with DEE and promote their long-term well-being. Besides, it is critical that policymakers receive quantitative data about this impact to adequately respond to the needs of these families. To this end, a database was developed using the Childhood Rare Epilepsy Social Impact Assessment (CRESIA) psychosocial impact measurement instrument to quantitatively assess the quality of life of caregivers.

Duelo anticipado en familiares de personas con demencia. Variables psicosociales asociadas y su impacto sobre la salud del cuidador. Una revisión de literatura / Anticipatory grief in family caregivers of persons with dementia. Psychosocial correlates and impact on caregiver's health: A literature review

Introducción Cuidar de un familiar con demencia puede suponer consecuencias negativas en el bienestar del cuidador. Uno de los procesos que se pueden vivenciar es el duelo anticipado, que se define como los sentimientos de dolor y pérdida que aparecen en el cuidador previamente al fallecimiento de la persona cuidada. Objetivos La revisión tuvo como objetivos conceptualizar el duelo anticipado en esta población, estudiar las variables psicosociales relacionadas, y conocer las repercusiones para la salud del cuidador. Método Se realizó una búsqueda sistemática siguiendo las directrices PRISMA en las bases de datos ProQuest, PubMed, Web of Science (WOS) y Scopus, incluyendo los estudios publicados en los últimos 10 años (2013-2023). Resultados Se obtuvo un total de 160 artículos, seleccionándose 15 finalmente. Se observa que el duelo anticipado se define como un proceso ambiguo al aparecer antes de la muerte del familiar enfermo. Ser cuidadora mujer, cónyuge del familiar con demencia, tener una relación más cercana con él y/o tener una importante responsabilidad en el cuidado se asocian a una mayor probabilidad de experimentar duelo anticipado. Respecto a la persona cuidada, si esta se encuentra en una fase severa de la enfermedad, es más joven y/o presenta comportamientos problemáticos, también se observa un mayor duelo anticipado en el cuidador. El duelo anticipado tiene un impacto significativo en la salud física, psicológica y social de los cuidadores, asociándose con una mayor sobrecarga, sintomatología depresiva y aislamiento social. Conclusiones El duelo anticipado resulta un concepto relevante en el contexto de las demencias, siendo necesario incluirlo en programas de intervención para esta población (AU)

Introduction Taking care of a relative with dementia may be linked to negative consequences for the caregiver. One of the processes that can be experienced is anticipatory grief, that is defined as the feelings of pain and loss that appear in the caregiver before the death of the person cared for. Objectives The review aimed to conceptualize anticipatory grief in this population, to study the related psychosocial variables, and to know the repercussions for the health of the caregiver. Method A systematic search was made under the directives of PRISMA statement in the ProQuest, PubMed, Web of Science (WOS), and Scopus databases, including studies published in the last 10 years (2013–2023). Results A total of 160 articles were obtained, 15 being finally selected. It is observed that anticipatory grief is defined as an ambiguous process since it appeared before the death of the sick family member. Being a female caregiver, spouse of a family member with dementia, having a closer relationship with him and/or having an important responsibility in care, are associated with a greater chance of experiencing anticipatory grief. In relation to the person cared for, if he or she is in a severe phase of the disease, is younger, and/or presents problematic behaviours, there is also greater anticipatory grief in the family caregiver. Anticipatory grief has a significant impact on caregivers’ physical, psychological, and social health, being associated with greater burden, depressive symptomatology, and social isolation. Conclusions Anticipatory grief turns out to be a relevant concept in the context of dementia, being necessary to include it in intervention programs for this population (AU)

[Quality of life and caregiver burden in caregivers with patients with complications from type 2 diabetes mellitus]. / Calidad de vida y sobrecarga del cuidador en cuidadores con pacientes con complicaciones por la diabetes mellitus tipo 2.

Background: Chronic diseases with partial dependence, including type 2 diabetes mellitus, modify the way of life of the patient and his family, who adopt the role of caregiver having to reorganize, rethink their expectations and adapt their goals and objectives to the situation, this may generate a deterioration of the quality of life and an overload syndrome. Objective: To identify the relationship between quality of life and caregiver overload in caregivers with patients with complications from type 2 diabetes mellitus assigned to the Family Medicine Unit No. 7. Material and methods: Cross-sectional study, carried out with 138 caregivers with a patient with complications from type 2 diabetes mellitus. The sociodemographic profile instruments, the SF-36 health questionnaire, and the Zarit scale were used for data collection. The analysis was carried out through descriptive statistics and Spearman's correlation test, with a significance level of p≤0.05. Results: It was identified that the health-related quality of life in caregivers with patients with complications from type 2 diabetes mellitus evaluated with the SF-36 questionnaire had a mean value of 74.8; with a score in the physical and mental components of 63.9 and 38.1 respectively. The best qualified dimensions were social function (84.9) and physical function, on the other hand, vitality obtained a lower qualification. It was observed that 5.05% of the caregivers present light overload and 5.05% intense overload. When performing the correlation between the global rating of the Zarit scale with the 8 dimensions of the SF-36 health questionnaire in caregivers of patients with complications of type 2 diabetes mellitus, a moderate negative correlation was observed between the dimensions of mental health, physical function, emotional role and vitality, as well as a weak negative correlation between the dimensions of social role and physical role. Conclusions: The results show an inverse correlation between the caregiver's burden and the quality-of-life dimensions, that is, if one decreases, the other increases; It is important to carry out health promotion activities in this population to prevent caregiver overload.

Introducción: las enfermedades crónicas con parcial dependencia, incluyendo la diabetes mellitus tipo2, modifican el modo de vida del paciente y de su familia, quienes adoptan el rol de cuidador, por lo que tienen que reorganizarse, replantear sus expectativas y adecuar sus metas y objeticos a la situación, generando un deterioro de la calidad de vida y un síndrome de sobrecarga. Objetivo: identificar la relación entre calidad de vida y sobrecarga del cuidador en cuidadores con pacientes con complicaciones por la diabetes mellitus tipo 2 adscritos a la Unidad de Medicina Familiar No. 7. Material y métodos: estudio transversal, realizado con 138 cuidadores con paciente con complicaciones por la diabetes mellitus tipo 2. Para la recolección de los datos, fueron utilizados los instrumentos de perfil sociodemográfico, el cuestionario de salud SF-36 y la escala de Zarit. El análisis se realizó por medio de estadística descriptiva y de la prueba de correlación de Spearman, con un nivel de significancia de p ≤ 0.05. Resultados: se identificó que la calidad de vida relacionada con la salud en los cuidadores con pacientes con complicaciones por la diabetes mellitus tipo 2 evaluada con el cuestionario SF-36 tuvo un valor medio de 74,8; con una puntuación en los componentes físico y mental de 63,9 y de 38,1 respectivamente. Las dimensiones mejor calificadas fueron la función social y física, en cambio, la vitalidad obtuvo menor calificación. Se observó que el 5,05% de los cuidadores presentan sobrecarga ligera y el 5,05% sobrecarga intensa. Al realizar la correlación entre la calificación global de la escala de Zarit con las 8 dimensiones del cuestionario de salud SF-36 en cuidadores de pacientes con complicaciones por la diabetes mellitus tipo 2, se observó una correlación moderada negativa entre las dimensiones de salud mental, la función física, el rol emocional y la vitalidad, así como una correlación negativa débil entre las dimensiones de función social y el rol físico. Conclusiones: los resultados muestran una correlación inversa entre la sobrecarga del cuidador y las dimensiones de calidad de vida, es decir, si disminuye una aumenta la otra; es importante realizar actividades de promoción a la salud en esta población para prevenir la sobrecarga del cuidador.