RESUMO
BACKGROUND: Children and young people (CYP) in contact with child welfare services are at high risk of developing mental health problems. There is a paucity of evidenced-based preventative interventions provided to this population. OBJECTIVE: This project worked in partnership with CYP, their parents/caregivers and the professionals who support them to co-produce a preventative mental health intervention for CYP in contact with child welfare services. PARTICIPANTS AND SETTING: We recruited a purposive sample of CYP in contact with child welfare services (n = 23), parents/caregivers (n = 18) and practitioners working within child welfare services and mental health services (n = 25) from the North East of England and convened co-production workshops (n = 4). METHODS: This project followed the established principles for intervention development, applying the six steps to quality intervention development (6SQUID) approach. The mixed method research consisted of four work packages with continuous engagement of stakeholders throughout the project. These were: a systematic review of reviews; focus groups with practitioners; interviews with parents/caregivers and CYP; co-production workshops. RESULTS: We identified that the primary risk factor affecting CYP in contact with child welfare services is the experience of childhood adversity. The quality of relationships that the CYP experiences with both their parent/caregivers and the professionals involved in their care are considered to be the main factors amenable to change. CONCLUSIONS: We found that a trauma-informed, activity-based intervention with an embedded family-focused component provided to CYP who have experienced adversity is most likely to prevent mental health problems in those in contact with child welfare services.
Assuntos
Serviços de Proteção Infantil , Transtornos Mentais , Humanos , Criança , Adolescente , Feminino , Masculino , Transtornos Mentais/prevenção & controle , Inglaterra , Grupos Focais , Proteção da Criança , Pais/psicologia , Cuidadores/psicologia , Adulto JovemRESUMO
In the evolving landscape of older person care, the imperative to explore holistic approaches persists, especially in regions with distinct societal norms around informal caregiving. The deeply ingrained tradition of familial caregiving, often led by female family members, has historically compensated for healthcare system gaps in less integrated systems. Hence, societal expectations may affect registered nurses' experiences and impact the quality of care for older persons. This study aims to describe the meaning of caring for older persons in care settings in Greece. Ten in-depth interviews with registered nurses in older person care settings underwent qualitative thematic analysis. Four themes emerged from the analysis: (i) Living and bonding with older people as a basis for caring, (ii) Caring as a double-faced fulfillment, (iii) A sense of insufficiency in the caring relationship, and (iv) The encounter of existential issues creating loneliness. This research provides insights into the meaning of caring for older persons, highlighting the experiences of the closest professional caregivers of older individuals. A specific capture of the entanglement of cultural norms, societal expectations, and their impact on professional caregivers' experiences may contribute to quality care provision in systems rooted in familial caregiving traditions.
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Cuidadores , Pesquisa Qualitativa , Humanos , Grécia , Feminino , Cuidadores/psicologia , Masculino , Idoso , Pessoa de Meia-Idade , Entrevistas como Assunto , Adulto , Enfermeiras e Enfermeiros/psicologia , Atitude do Pessoal de Saúde , Solidão/psicologiaRESUMO
BACKGROUND: Affiliate stigma is common among caregivers of people with mental illness and impacts negatively on the caregivers' quality of life and their ability to care for the patients. Although there is evidence of affiliate stigma in sub-Saharan Africa, the psychometric properties of commonly used tools are not available in the African context. The aim of this analysis was to evaluate the factor structure of the affiliate stigma scale among caregivers of people with mental illness in southwestern Uganda. Having a validated method to assess affiliate stigma in the Ugandan setting helps to appropriately evaluate affiliate stigma among caregivers of people with mental illnesses, which could inform the development of interventions to support such caregivers. METHOD: A total of 385 caregivers of people with mental illness attending outpatient psychiatry clinics in selected tertiary hospitals in southwestern Uganda were enrolled in the study. The affiliate stigma and depression were assessed using the affiliate stigma scale and the patient health questionnaire (PHQ-9) respectively. We conducted exploratory and confirmatory factor analysis to determine the factor structure, reliability and validity of the affiliate stigma scale. We also evaluated the convergent validity of the affiliate stigma scale by determining the correlation between affiliate stigma scale scores and the PHQ-9. RESULT: More than half of participants were male (55.06%) and majority of caregivers were living in rural areas (80.26%). The sample size was adequate, as evidenced by the KMO of 0.91 and the inter-correlation was sufficient to conduct the factor analysis, according to the Bartlett test. Confirmatory factor analysis revealed four factors and all 22 items were retained as all of them had a factor loading > 0.4. The internal consistency of the total scale was excellent (alpha = 0.92). The affiliate stigma score correlated with depression which has been hypothesized to be associated with the stigma of mental illness. CONCLUSION: The study findings show the affiliate stigma scale as a valid measure of affiliate stigma among the caregivers of patients with mental illness in southwestern Uganda. Therefore, this scale provides an opportunity to mental health care providers to assess affiliate stigma and develop interventions aimed at prevention stigma among caregivers and improve outcomes among people with mental illness.
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Cuidadores , Transtornos Mentais , Psicometria , Estigma Social , Humanos , Cuidadores/psicologia , Uganda , Masculino , Feminino , Psicometria/instrumentação , Transtornos Mentais/psicologia , Adulto , Pessoa de Meia-Idade , Reprodutibilidade dos Testes , Inquéritos e Questionários/normas , Análise Fatorial , Depressão/psicologia , Qualidade de Vida/psicologia , Adulto JovemRESUMO
INTRODUCTION: There is a lack of community-based rehabilitation for stroke in the Philippines, and research on this topic is limited. Different challenges may be encountered in urban and rural settings. The aim of the Tulong, Ugnayan ng Lingap At gabaY (TULAY) project is to develop a context-appropriate, community-based stroke support programme, consisting of self-management and training resources to augment the rehabilitation and recovery process. An important stage in the development of this programme is to qualitatively explore the experiences and needs of all stakeholders. MATERIALS AND METHODS: Using co-designed and evidence-based topic guides, in-depth semi-structured interviews will be conducted with people living with stroke, household carers and care providers. We will aim to gain a representation of different regions (within Luzon, Visayas, and Northern Mindanao), socioeconomic levels, and urban and rural locations. For people with stroke and household carers, interviews will be supplemented by auto-photography and visual elicitation to widen access for those that prefer to share their experiences visually or have communication problems. An interpretivist paradigm will be applied across all interview data and the consolidated criteria for reporting qualitative research (COREQ) will be followed. Thematic analysis will be undertaken using guidance by Braun and Clarke. DISCUSSION: To our knowledge, this study is the first of its kind in the Philippines. It has several methodological strengths, including the capture of perspectives from multiple stakeholders in diverse settings, the inclusion of people with communication difficulties, use of visual methods, and analysis in the native language. The findings will have various applications, including the potential to influence policy, practice and guidelines, and to inform the development of the TULAY stroke support programme.
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População Rural , Reabilitação do Acidente Vascular Cerebral , Humanos , Filipinas , Reabilitação do Acidente Vascular Cerebral/métodos , População Urbana , Acidente Vascular Cerebral , Entrevistas como Assunto , Cuidadores , Pesquisa Qualitativa , FemininoRESUMO
INTRODUCTION: Relapse among individuals with serious mental illnesses in resource-limited contexts, including South Africa, is a significant concern. To date, the risks for relapse among this population is well documented, but little is known about prevention strategies to reduce its occurrence in these resource-limited settings. Therefore, this qualitative study explores the risk factors and strategies for relapse prevention from the patients' and caregivers' perspectives. METHODS: We conducted audio-recorded face-to-face in-depth interviews to capture the lived experience of relapse of inpatient study participants with serious mental illness (N = 24) at a public specialized psychiatry hospital in South Africa and their caregivers (N = 6). We conducted an inductive thematic analysis with two pre-specified themes (risk factors for relapse and strategies for prevention), with the codes devised from the data. RESULTS: Six sub-themes were identified from the analysis within the two pre-specified themes(Risk factors and strategies for relapse prevention): personal-related, family-related, and health system-related risk factors and strategies for preventing relapse, respectively. To highlight some essential findings, the importance of motivation for drug adherence, family involvement, and availability of anti-psychotic drugs in public health care were noted. More importantly, this study identified important cultural complexities where traditional healers play a significant role in some cultural understanding and treatment of mental illness, affecting medication adherence. CONCLUSION: This study calls for people-centered mental health care delivery in a public health system that listens to the voice of concern, including cultural challenges, and implements meaningful support that matters most to the patient and their family/caregivers.
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Cuidadores , Transtornos Mentais , Pesquisa Qualitativa , Prevenção Secundária , Humanos , Cuidadores/psicologia , África do Sul , Masculino , Feminino , Fatores de Risco , Adulto , Pessoa de Meia-Idade , Prevenção Secundária/métodos , RecidivaRESUMO
BACKGROUND/PURPOSE: Sepsis is a leading cause of morbidity, mortality and healthcare utilisation for children worldwide, particularly in resource-limited regions. In Kumasi, Ghana, organ system failure and mortality in children who present to the emergency department (ED) with symptoms of sepsis are often due to late presentation and lack of recognition and implementation of time-critical evidence-based interventions. The purpose of this study was to assess the barriers and facilitators for families in seeking healthcare for their septic children; and to understand the barriers and facilitators for ED providers in Kumasi to recognise and implement sepsis bundle interventions. DESIGN: Single-centre qualitative interviews of 39 caregivers and 35 ED providers in a teaching hospital in Kumasi, Ghana. RESULTS: Thematic analysis of data from caregivers about barriers included: fear of hospital, finances, transportation, delay from referring hospital, cultural/spiritual differences, limited autonomy and concerns with privacy and confidentiality. Negative impacts on family life included financial strain and neglect of other children. ED providers reported barriers included: lack of training, poor work environment and accessibility of equipment. Facilitators from caregivers and providers included some support from the National Health Insurance. Caregivers reported having positive experiences with frontline clinicians, which encouraged them to return to seek health services. IMPLICATIONS: Qualitative structured interviews identified facilitator and critical barrier themes about seeking healthcare, and sepsis identification/management in the paediatric population arriving for care in our centre in Kumasi, Ghana. This study highlights significant deficiencies in healthcare systems that make sepsis management challenging in these settings.
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Cuidadores , Serviço Hospitalar de Emergência , Acessibilidade aos Serviços de Saúde , Aceitação pelo Paciente de Cuidados de Saúde , Pesquisa Qualitativa , Sepse , Humanos , Gana/epidemiologia , Sepse/terapia , Sepse/enfermagem , Masculino , Feminino , Cuidadores/psicologia , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Criança , Pré-Escolar , Adulto , Lactente , Entrevistas como AssuntoRESUMO
OBJECTIVE: To identify the needs of caregivers of hospitalised adults with dementia in the hospital and during care transitions. DESIGN: Pragmatic qualitative inquiry with semi-structured interviews. SETTING: Michael E. DeBakey Veterans Affairs Medical Center in Houston, Texas, USA. PARTICIPANTS: 12 family caregivers (family member (n=11); friend (n=1)) and 15 health professionals (hospital medicine physicians (n=4), inpatient nurse case managers (n=2), social workers (n=4), outpatient geriatrics providers (n=2), a primary care provider (n=1), geriatric psychiatrists (n=2)) were interviewed. Caregivers were recruited while their care recipient was hospitalised and were interviewed at least 2 weeks after the care recipient was discharged from the hospital. Health professionals were eligible for the study if they provided care to patients with dementia in the inpatient or outpatient setting. RESULTS: Four recommendations emerged from the analysis: (1) engage caregivers as partners in the care team, (2) provide dementia-specific information and training, (3) connect caregivers to home and community-based services and (4) provide care navigation and support for the caregiver posthospitalisation. CONCLUSIONS: Hospital care transitions are challenging for caregivers of hospitalised adults living with dementia. Care transition interventions designed to support caregivers with tailored, dementia-specific information and services are needed.
Assuntos
Cuidadores , Demência , Hospitais de Veteranos , Pesquisa Qualitativa , Humanos , Cuidadores/psicologia , Demência/enfermagem , Demência/terapia , Masculino , Feminino , Idoso , Pessoa de Meia-Idade , Estados Unidos , Hospitalização , Entrevistas como Assunto , Adulto , Família/psicologia , Texas , Avaliação das Necessidades , Idoso de 80 Anos ou mais , United States Department of Veterans AffairsRESUMO
BACKGROUND: Rett syndrome (RTT) is a severe X-linked neurodevelopmental disorder associated with multiple neurologic impairments. Previous studies have shown challenges to the quality of life of individuals with RTT and their caregivers. However, instruments applied to quantify disease burden have not adequately captured the impact of these impairments on affected individuals and their families. Consequently, an international collaboration of stakeholders aimed at evaluating Burden of Illness (BOI) in RTT was organized. METHODS: Based on literature reviews and qualitative interviews with parents of children and adults with RTT, a caregiver questionnaire was constructed to evaluate 22 problems (inclusive of core characteristics, functional impairments, and comorbidities) often experienced with RTT, rated mainly with a 5-level Likert scale. The questionnaire was administered anonymously online to an international sample of 756 caregivers (predominantly parents) of girls and women with RTT. Descriptive statistics were used to identify problems of high frequency and impact on affected individuals and caregivers. Chi-square tests characterized the relationship between problem severity and impact responses, while nonparametric ANOVAs of raw and z-score adjusted scores identified agreement between severity and impact on individual and caregiver. Secondary inferential tests were used to determine the roles of age, clinical type, and country of residence on BOI in RTT. RESULTS: There was variability in reported frequency of problems, with the most prevalent, severe and impactful being those related to the core features of RTT (i.e., communication and fine and gross motor impairments). Chi-square analyses demonstrated interdependence between severity and impact responses, while ANOVAs showed that many problems had disproportionately greater impact than severity, either on affected individuals (e.g., hand stereotypies) or their caregivers (e.g., sleep difficulties, seizures, pain, and behavioral abnormalities). With certain exceptions (e.g., breath-holding, seizures), age, clinical type, or country of residence did not influence these BOI profiles. CONCLUSIONS: Our data demonstrate that core features and related impairments are particularly impactful in RTT. However, problems with mild severity can also have disproportionate impact on affected individuals and, particularly, on their caregivers. Future analyses will examine the role of factors such as treatment outcomes, healthcare services, and healthcare provider's perspectives, in these BOI profiles.
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Cuidadores , Efeitos Psicossociais da Doença , Síndrome de Rett , Humanos , Cuidadores/psicologia , Feminino , Inquéritos e Questionários , Adulto , Masculino , Adolescente , Criança , Adulto Jovem , Qualidade de Vida , Pré-Escolar , Pessoa de Meia-IdadeRESUMO
Many people living with dementia and unpaid carers experience inequalities in care related to challenges in receiving a correct diagnosis, care and support. Whilst complexities of the evidence are well recognised including barriers in receiving a diagnosis or post-diagnostic care, no coherent model has captured the far-reaching types and levels of inequalities to date. Building on the established Dahlgren & Whitehead Rainbow model of health determinants, this paper introduces the new Dementia Inequalities model. The Dementia Inequalities model, similar to the original general rainbow model, categorises determinants of health and well-being in dementia into three layers: (1) Individual; (2) Social and community networks; and (3) Society and infrastructure. Each layer comprises of general determinants, which have been identified in the original model but also may be different in dementia, such as age (specifically referring to young- versus late-onset dementia) and ethnicity, as well as new dementia-specific determinants, such as rare dementia subtype, having an unpaid carer, and knowledge about dementia in the health and social care workforce. Each layer and its individual determinants are discussed referring to existing research and evidence syntheses in the field, arguing for the need of this new model. A total of 48 people with lived, caring, and professional experiences of dementia have been consulted in the process of the development of this model. The Dementia Inequalities model provides a coherent, evidence-based overview of inequalities in dementia diagnosis and care and can be used in health and social care, as well as in commissioning of care services, to support people living with dementia and their unpaid carers better and try and create more equity in diagnosis and care.
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Demência , Humanos , Disparidades em Assistência à Saúde , Cuidadores , Feminino , Idoso , Masculino , Fatores Socioeconômicos , Determinantes Sociais da Saúde , Apoio Social , Modelos TeóricosRESUMO
BACKGROUND: The responsibility of care for Veterans and Service Members (V/SMs) with traumatic brain injury (TBI) often defaults to informal family caregivers. Caregiving demands considerable knowledge, skill, and support to facilitate the health and well-being of V/SMs and themselves. Persistent and common TBI caregiver issues include strain, depression, and anxiety. While evidence-based, brief interventions have been developed and implemented for family caregivers in Veteran neurodegenerative populations, few interventions have been developed, adapted, or tested to support the unique needs of caregivers of V/SMs with TBI. OBJECTIVE: This study will adapt and test an evidence-based, personalized, 6-session telehealth caregiver intervention, "Resources for Enhancing All Caregivers' Health" (REACH), to meet the unique needs of caregivers of V/SMs with TBI. If successful, a community-based participatory research team will develop an implementation plan to roll out REACH TBI across the national Veterans Affairs Polytrauma System of Care. METHODS: This mixed methods, crossover waitlist control clinical trial will use a Type 1 Hybrid Effectiveness-Implementation approach to adapt and then test the effects of REACH TBI on key TBI caregiver outcomes. RESULTS: This study was funded by the Department of Defense in September 2023. Participant enrollment and data collection will begin in 2024. CONCLUSIONS: If effective, REACH TBI will be the first evidence-based intervention for caregivers of V/SMs with TBI that can be scaled to implement across the Veterans Affairs Polytrauma System of Care and fill a notable gap in clinical services. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/57692.
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Lesões Encefálicas Traumáticas , Cuidadores , United States Department of Veterans Affairs , Veteranos , Humanos , Lesões Encefálicas Traumáticas/terapia , Lesões Encefálicas Traumáticas/enfermagem , Cuidadores/psicologia , Veteranos/psicologia , Estados Unidos , United States Department of Veterans Affairs/organização & administração , Traumatismo Múltiplo/terapia , Traumatismo Múltiplo/enfermagem , Militares/psicologia , Masculino , Feminino , Telemedicina , AdultoRESUMO
PURPOSE: This retrospective cohort study explores the impact of the COVID-19 pandemic on pediatric trauma cases in Singapore's National University Hospital from January 2015 to July 2021. The pandemic prompted unprecedented measures, altering societal dynamics. The study hypothesizes a reduction in major trauma incidents during the pandemic period. METHODS: This is a single-center retrospective study including all pediatric patients presenting with trauma-related ICD-9 codes, and an Injury Severity Score (ISS) greater than 8. Patients were stratified into two time periods: pre-pandemic (January 2015 to March 2020) and pandemic (April 2020 to July 2021) periods. RESULTS: Out of 254 pediatric trauma cases, 201 occurred pre-pandemic, and 53 during the pandemic. While overall trauma incidence remained similar, the pandemic period saw a shift in injury patterns. Home-based falls increased, vehicular accidents decreased, while deliberate self-harm and caregiver abuse rose significantly. The incidence of serious trauma attributed to non-accidental injury increased during the pandemic. CONCLUSION: The study reveals changing trauma patterns, emphasizing the importance of understanding societal impacts during pandemics. Notably cases of deliberate self-harm and caregiver abuse surged, echoing global concerns highlighted in other studies during the pandemic. The study underscores the need to preempt physical and psychological stressors in vulnerable populations during future pandemics.
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COVID-19 , Comportamento Autodestrutivo , Populações Vulneráveis , Ferimentos e Lesões , Humanos , COVID-19/epidemiologia , Estudos Retrospectivos , Criança , Feminino , Masculino , Ferimentos e Lesões/epidemiologia , Ferimentos e Lesões/psicologia , Singapura/epidemiologia , Populações Vulneráveis/estatística & dados numéricos , Pré-Escolar , Comportamento Autodestrutivo/epidemiologia , Comportamento Autodestrutivo/psicologia , Incidência , Adolescente , Cuidadores/psicologia , Cuidadores/estatística & dados numéricos , Lactente , SARS-CoV-2 , Pandemias , Escala de Gravidade do FerimentoRESUMO
BACKGROUND: Domestic, family and sexual violence is a prevalent health and social issue. Nurses may be exposed to higher rates of this violence in their personal lives compared to the community, but little is known about their polyvictimisation experiences or health and well-being impacts. METHODS: An online descriptive, cross-sectional survey of women nurses, midwives and carer members of the Australian Nursing and Midwifery Federation (ANMF) (Victorian Branch) (response rate: 15.2% of nurses sent an invitation email/28.4% opened the email). Violence survey measures included: intimate partner violence (Composite Abuse Scale); child abuse and sexual violence (Australian Bureau of Statistics Personal Safety Survey items). Health measures included: Short Form-12; Fast Alcohol Screening Test; Patient Health Questionnaire-4; Short Screening for DSM-IV Posttraumatic Stress Disorder; well-being measures included: Connor-Davidson Resilience Scale, social support, and financial stress. Proportions were used to describe the prevalence of violence by sociodemographic characteristics and health and well-being issues; logistic regression predicted the odds of experiencing overlapping types of violence and of experiencing health and well-being outcomes. RESULTS: 5,982 participants (from a parent study of 10,674 nurses, midwives and carers) had experienced at least one type of lifetime violence; half (50.1%) had experienced two or three types (polyvictimisation). Survivors of child abuse were three times more likely to experience both intimate partner violence and non-partner adult sexual assault. Any violence was associated with poorer health and well-being, and the proportion of affected participants increased as the types of violence they had experienced increased. Violence in the last 12-months was associated with the poorest health and well-being. CONCLUSIONS: Findings suggest a cumulative, temporal and injurious life course effect of domestic, family and sexual violence. The polyvictimisation experiences and health and well-being associations reported by survivor nurses, midwives and carers underscores the need for more accessible and effective workplace interventions to prevent and mitigate psychosocial ill health, especially in the recent aftermath of violence.
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Cuidadores , Violência Doméstica , Delitos Sexuais , Humanos , Estudos Transversais , Feminino , Adulto , Delitos Sexuais/psicologia , Delitos Sexuais/estatística & dados numéricos , Pessoa de Meia-Idade , Cuidadores/psicologia , Cuidadores/estatística & dados numéricos , Austrália , Violência Doméstica/estatística & dados numéricos , Violência Doméstica/psicologia , Enfermeiras e Enfermeiros/psicologia , Enfermeiras e Enfermeiros/estatística & dados numéricos , Masculino , Inquéritos e Questionários , Adulto Jovem , Tocologia/estatística & dados numéricosRESUMO
BACKGROUND: Angelman syndrome (AS) is a rare neurodevelopmental disease caused by imprinting disorders that impede the production of the ubiquitin E3A ligase protein (UBE3A). AS affects multiple systems, with the main symptoms including epilepsy, psychomotor disorders and speech development disorders. To date, no study has been conducted in the Polish population to verify the condition's diagnosis and treatment process. RESULTS: Seventy patients with the median age of 60 months were included into the analysis. 80% of patients were diagnosed with deletion, 19.9% with a mutation of UBE3A gene, 4.3% with paternal uniparental disomy (UPD) and 2.8% with an imprinting defect. The mean age of first symptoms was 5 months, while the mean age of diagnosis was 29 months (earliest in deletion group at 23 months), and the median duration of diagnosis process was 7 months. The average time to a clinical geneticist appointment was 3 months. 37.9% of the patients initially received a different diagnosis. Epileptic seizures were present in 88.6% of the individuals. 98.6% of the studied group were under care of a pediatric neurologist, 47.1% of a gastroenterologist. A ketogenic diet was used in 7.1% of patients. Caregivers identified finding a specialist suitable for AS patients and access to genetic testing as the biggest problems. CONCLUSIONS: The care of patients with AS in Poland is carried out according to the European and world standards, however there is an impeded access to clinical geneticist, and the knowledge about rare diseases among primary healthcare physicians could be improved. Moreover, access to AS care specialists and coordination of care is limited. There is a need for creation a specialized centers and databases for AS patients.
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Síndrome de Angelman , Humanos , Síndrome de Angelman/diagnóstico , Síndrome de Angelman/genética , Polônia , Masculino , Feminino , Pré-Escolar , Inquéritos e Questionários , Criança , Lactente , Cuidadores , Adolescente , Ubiquitina-Proteína Ligases/genéticaRESUMO
Informal caregivers, crucial contributors to healthcare, face myriad challenges in supporting individuals with health needs. While IT applications offer promising solutions, some caregivers hesitate to adopt them, favoring traditional communication approaches with healthcare and support providers. This study, conducted in Sweden, presents why caregivers are reluctant to use IT applications. Through a qualitative approach involving group interviews with caregiver association members, four key themes emerged, namely, need for in-person support with grief and stress, need for private support spaces, cognitive impairment, and financial constraints. Understanding these barriers is crucial for developing inclusive caregiving strategies that balance IT-based solutions with in-person assistance, promoting a sustainable caregiving support ecosystem.
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Cuidadores , Cuidadores/psicologia , Humanos , Suécia , Pesquisa Qualitativa , Feminino , Atitude Frente aos Computadores , Masculino , Apoio SocialRESUMO
We applied natural language processing (NLP) to a corpus extracted from 4 hours of expert panel discussion transcripts to determine the sustainability of a Stage II-III clinical trial of online social support interventions for Hispanic and African American dementia caregivers. Prominent topics included Technology/hard to reach populations, Training younger populations, Building trust, Privacy and security issues, Simplification of screening questions and recruitment procedures, Understanding participants' needs, Planning strategies and logistics, Potential recruitment places, Adjusting intervention size downwards to engage elderly participants, Targeting different generations, Internet-based interventions by age range, and Providing step-by-step instructions and an overview of the entire research process during recruitment. The application of NLP to qualitative data on a dementia caregiving clinical trial provides useful insights for recruitment, retention, and adherence to guidelines for such interventions serving Hispanic and African American dementia caregivers.
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Negro ou Afro-Americano , Cuidadores , Demência , Hispânico ou Latino , Processamento de Linguagem Natural , Seleção de Pacientes , Apoio Social , Humanos , Internet , IdosoRESUMO
In Thailand, increasing caregiving needs for senior citizens, particularly in low-income homes, may elevate the caregiver (CG) burden. This study assesses the user acceptance and usability of the 'SmartCG' mobile application in enhancing healthcare management. The app offers health evaluations, home visits, knowledge management, screening forms, and care plans. Using the Technology Acceptance Model, 402 caregivers from Mahasarakham province evaluated the app's usability on a 5-point Likert scale. Results showed a significant increase in acceptance scores after using SmartCG (11.49 ± 1.54 to 13.19 ± 2.74, p < 0.001). Users reported high satisfaction with its ease of use (mean = 4.10 ± 0.61) and found the knowledge-based menu (mean = 4.07 ± 0.63) and visiting/map menus (mean = 4.05 ± 0.63) user-friendly. This study provides empirical evidence that the SmartCG app effectively enhances healthcare management, emphasizing the importance of user-friendly interfaces in healthcare technology.
Assuntos
Cuidadores , Aplicativos Móveis , Humanos , Tailândia , Masculino , Feminino , Interface Usuário-Computador , Adulto , Pessoa de Meia-Idade , Idoso , TelemedicinaRESUMO
Informal caregivers (ICs), including the patient's spouse, close relatives, or friends, play an important role in caregiving individuals with head and neck cancer (HNC). AI-based chatbots might offer information and assistance related to caregiving. This study presents the viewpoints of ICs and healthcare professionals (HCPs) on using AI-based chatbots in caring for individuals with HNC. A total of six focus groups were conducted with 15 ICs and 13 HCPs from three Swedish university hospitals. The study uncovers a widespread hesitancy toward the intention to use AI-based chatbots among ICs and HCPs. Factors contributing to this reluctance include their distrust in chatbot-provided information, negative past experiences of using chatbots, and lack of human connection in chatbot interactions. Embracing a holistic approach is crucial when designing chatbots, ensuring active user engagement and incorporating their perspectives into the design process.
Assuntos
Cuidadores , Neoplasias de Cabeça e Pescoço , Humanos , Suécia , Inteligência Artificial , Feminino , Masculino , Grupos Focais , Pessoal de Saúde/psicologia , Pesquisa Qualitativa , Pessoa de Meia-Idade , Adulto , Atitude do Pessoal de SaúdeRESUMO
BACKGROUND: Prostate cancer mortality rates are high in Nigeria. While prostate cancer is highly curable with early detection and effective multidisciplinary management, the quality of care is suboptimal in this setting. Sustainable delivery of high-quality care for patients with localized prostate cancer is needed to save more lives. To inform future interventions to improve care, this study aimed to identify barriers and facilitators that influence prostate cancer detection and management in Nigeria. METHODS: Six focus group discussions (FGDs), stratified by stakeholders were conducted with a purposive sample of prostate cancer patients (n = 19), caregivers (n = 15), and healthcare providers (n = 18), in two academic tertiary hospitals in northern and southern Nigeria. A discussion guide organized based on the socio-ecological model was used. FGDs were recorded, transcribed, and analysed using the framework technique. RESULTS: Barriers and facilitators were identified at the individual, interpersonal, and organizational levels. Barriers to detection included limited knowledge and misperceptions among patients, caregivers, and community-based non-specialist healthcare providers, and limitations of centralized opportunistic screening; while facilitators included the potential for religious institutions to encourage positive health-seeking behaviour. Barriers to management included non-uniformity in clinical guideline usage, treatment abandonment amidst concerns about treatment and survival, absence of patient interaction platforms and follow-up support systems, difficulty in navigating service areas, low health insurance coverage and limited financial resource of patients. Facilitators of management included the availability of resource stratified guidelines for prostate cancer management and the availability of patient peers, caregivers, nurses, and medical social workers to provide correct medical information and support patient-centred services. Participants also provided suggestions that could help improve prostate cancer detection and management in Nigeria. CONCLUSION: This study identified multiple determinants affecting the detection and management of localized prostate cancer. These findings will inform the refinement of implementation strategies to improve the quality of prostate cancer care in Nigeria.
Assuntos
Cuidadores , Grupos Focais , Pessoal de Saúde , Neoplasias da Próstata , Humanos , Masculino , Neoplasias da Próstata/terapia , Neoplasias da Próstata/diagnóstico , Nigéria , Cuidadores/psicologia , Pessoa de Meia-Idade , Idoso , Pessoal de Saúde/psicologia , Acessibilidade aos Serviços de Saúde , Conhecimentos, Atitudes e Prática em Saúde , Detecção Precoce de Câncer , Pesquisa Qualitativa , AdultoAssuntos
Cuidadores , Demência , Humanos , Cuidadores/psicologia , Cuidadores/educação , Demência/enfermagem , EmpoderamentoRESUMO
Dementia significantly impacts caregivers, particularly in low and middle-income countries where support is often inadequate. Given the gap in affordable and culturally relevant digital resources for Malaysian dementia caregivers, we developed "Demensia KITA," a mobile application (app) specifically tailored to their needs. This study utilized a theoretical framework proposed from existing literature and the "Model of Carer Stress and Burden". This paper discusses our app content development, highlighting key findings and challenges. To assess caregivers' needs, the Nominal Group Technique (NGT) with five dementia caregivers was conducted, followed by a Focus Group Discussion (FGD) with eight medical professionals. Both sessions were conducted online via Google Meet. In the NGT, ideas were generated, organized, prioritized, reviewed, and refined by medical professionals in the FGD. Content relevant to addressing the complexities of dementia caregiving was then discussed. Topics were either adapted from established modules or newly developed from credible sources. Subsequently, these were organized into modules and themes, and subsequently underwent expert validation. From the NGT, three key domains emerged: Knowledge, Services, and Support. These were further organized into two modules: 'Patient Care for Caregivers' and 'Caregiver Wellbeing'. Within these, twelve sub-modules were identified, covering a range of topics including basic knowledge on dementia, patient care, nutritional management, oral and dental care, simple exercises, daily activity and memory rehabilitation, service directories, support groups, emotional and stress management, welfare assistance, and daily motivation. This framework was developed to address the specific needs of dementia caregivers in terms of psychoeducation, psychosocial and caregiving skills, incorporating expert opinions in the field. This study corroborates the feasibility of online methods for mobile health app content development and encourages similar research. Future studies should evaluate Demensia KITA's effectiveness in alleviating caregiver burden across all regions, assess users' acceptance, and ensure it meets the evolving needs of Malaysian caregivers with regular updates.