RESUMO
La pandemia de COVID-19 ha afectado a la población, perjudicando especialmente a los miembros de aquellos grupos sociales en situación de mayor vulnerabilidad. Estas poblaciones específicas, como aquellas con alguna dependencia funcional, podrían verse más afectadas por los efectos de la pandemia del COVID-19. Por lo tanto, el objetivo de este artículo fue describir las intervenciones para preservar la salud general, mantener la función y la independencia y prevenir la infección por COVID-19 para los adultos con dependencia funcional (ADF). Se realizó una búsqueda sistemática en bases de datos. Se revisaron los títulos y los resúmenes de cada publicación para determinar su relevancia. Dos revisores independientes accedieron a los artículos de texto completo para determinar su elegibilidad después de la selección inicial. Las búsquedas se realizaron en septiembre de 2021 y se actualizaron en enero y julio de 2022. La información encontrada se clasificó en 3 categorías: 1) ADF durante la pandemia de COVID-19; 2) ADF durante la pandemia de COVID-19 según una condición específica (condiciones neurológicas, discapacidades/deficiencias sensoriales y deterioro cognitivo), y 3) Adultos mayores con dependencia funcional. Los adultos con dependencia enfrentaron dificultades y barreras durante la pandemia por COVID-19. Las autoridades de cada país deben garantizar que los ADF tengan acceso a los servicios de rehabilitación en tiempos de crisis sanitaria. Además, es necesario aumentar la capacidad de los servicios de rehabilitación en tiempos de crisis como pandemias. De igual manera, se sugiere el fortalecimiento de estrategias como la telerehabilitación para evitar el deterioro o agravamiento de la funcionalidad de las personas dependientes. (AU)
The COVID-19 pandemic has affected the world population, especially people from social groups in a situation of greater vulnerability among people with some functional dependency. Therefore, the aim of this review was to describe interventions during the pandemic to preserve general health, maintain function and independence, and prevent COVID-19 infection for functionally dependent adults (FDA). A systematic search in databases was carried out. Titles and abstracts of each publication were reviewed for relevance. Full-text articles were accessed by two independent reviewers. The information found was classified into three categories: 1) FDA during the COVID-19 pandemic, 2) FDA during the COVID-19 pandemic according to a specific condition (neurological conditions, sensory disabilities/impairments, and cognitive impairment), and 3) Older adults with functional dependence. The FDAs have faced difficulties and barriers during the COVID-19 pandemic. Strengthening strategies such as telerehabilitation is suggested to avoid deterioration or aggravation of the functionality of dependent people. (AU)
Assuntos
Humanos, Atividades Cotidianas, Vida Independente, Moradias Assistidas, Envelhecimento, CuidadoresRESUMO
Objetivo: Analisar as práticas de cuidado desenvolvidas para atender às necessidades de saúde de homens em atenção domiciliar. Métodos: Pesquisa observacional e qualitativa, realizada com 34 cuidadores e 24 homens assistidos pelo serviço de atenção domiciliar do município de João Pessoa. A coleta de dados foi realizada por meio de um roteiro com variáveis sociodemográficas e perguntas abertas. A Análise Crítica do Discurso foi utilizada como método de análise, com destaque para os significados representacional e identificacional dos discursos. Resultados: As práticas de cuidado e necessidades de saúde foram apontadas com base na relação hegemônica entre os atores do cuidado, associação do cuidado ao processo de trabalho informal, atuação da família, da atividade corresponsabilizada, e prática da autonomia e autocuidado. Conclusão: Evidenciou-se um cuidado multifacetado e executado por diversos atores com suporte de equipes multiprofissionais de atenção domiciliar. (AU)
Objective: To analyze the care practices developed to meet the health needs of men in home care. Methods: Observational and qualitative research, carried out with 34 caregivers and 24 men assisted by the home care service in the city of João Pessoa. Data collection was performed through a script with sociodemographic variables and open questions. Critical Discourse Analysis was used as a method of analysis, with emphasis on the representational and identificational meanings of the discourses. The research was approved according to the opinion number 1.829.326. Results: Care practices and health needs were identified based on the hegemonic relationship between the care actors, association of care with the informal work process, family activities and co-responsibility activities, and the practice of autonomy and self-care. Conclusion: There was evidence of a multifaceted care performed by different subjects with the support of multidisciplinary home care teams. (AU)
Objetivo: Analizar las prácticas asistenciales desarrolladas para satisfacer las necesidades de salud de los hombres en la atención domiciliaria. Métodos: Investigación observacional y cualitativa, realizada con 34 cuidadores y 24 hombres asistidos por el servicio de atención domiciliaria en la ciudad de João Pessoa. La recolección de datos se realizó mediante un guión con variables sociodemográficas y preguntas abiertas. Se utilizó el Análisis Crítico del Discurso como método de análisis, con énfasis en los significados representativos e identificativos de los discursos. La investigación fue aprobada de acuerdo al dictamen número 1.829.326. Resultados: Se identificaron prácticas de cuidado y necesidades de salud a partir de la relación hegemónica entre los actores del cuidado, la asociación del cuidado con el proceso de trabajo informal, las actividades familiares y de corresponsabilidad, y la práctica de la autonomía y el autocuidado. Conclusión: Se evidenció una atención multifacética realizada por diferentes sujetos con el apoyo de equipos multidisciplinares de atención domiciliaria. (AU)
Assuntos
Saúde do Homem, Conhecimentos, Atitudes e Prática em Saúde, Cuidadores, Conhecimento, Serviços de Assistência Domiciliar, Assistência DomiciliarRESUMO
BACKGROUND: Parents/caregivers of children with developmental disabilities (CDD) have a wide range of support needs and there are various interventions available. Support, challenges, and needs among parents/caregivers of CDD likely vary in different geographical settings. This study aimed to analyze the perceptions of support, challenges, and needs among parents/caregivers of CDD in Croatia, North Macedonia, and Serbia. METHODS: We conducted a cross-sectional study in March-April 2023 within the Erasmus + SynergyEd project. The eligible participants were parents and caregivers of CDD in Croatia, North Macedonia, and Serbia, who filled out a modified Caregiver Needs Survey online. RESULTS: Among 953 participants, 542 (57%) were from Croatia, 205 (21%) were from North Macedonia and 206 (22%) were from Serbia. The most common diagnosis of participants' children was autism spectrum disorder (26%). The child most often received the first diagnosis at the median of 2 years, diagnosed by a team of professionals. More than half (58%) of children attended preschool and public school, while 22% did not attend any schooling. Additional support from the state/city/county was received by 66% of CDD. Most participants declared not participating in association/organization for family support. Participants mostly (68%) used experts who work with the child as a source of information about their child's condition, followed by the Internet (53%). In the last 12 months, 60% of participants had difficulties with the availability of services in their area or problems getting appointments. The biggest problem in getting support was ensuring the child's basic rights were protected. Participants stated that ensuring greater rights for CDD was the greatest need for their families. CONCLUSION: Parents/caregivers of CDD in Croatia, North Macedonia, and Serbia faced multiple challenges, but most of them were satisfied with the services provided to their children. Future efforts to develop policies and services related to CDD should consider the opinions of their parents/caregivers and disparities in access to services.
Assuntos
Cuidadores, Deficiências do Desenvolvimento, Pais, Humanos, Estudos Transversais, Pais/psicologia, Cuidadores/psicologia, Masculino, Feminino, Sérvia, Criança, Croácia, República da Macedônia do Norte, Pré-Escolar, Deficiências do Desenvolvimento/terapia, Adulto, Necessidades e Demandas de Serviços de Saúde, Avaliação das Necessidades, Adolescente, Pessoa de Meia-Idade, Apoio Social, Inquéritos e Questionários, LactenteRESUMO
PURPOSE: Most persons who have had strokes are cared for at home by family members-many of whom experience depressive symptoms and quality of life changes as a result of providing care. The objective of this study is to determine theoretically based factors associated with unhealthy days in stroke family caregivers. RESEARCH DESIGN AND METHODS: Secondary data analysis was conducted using baseline data from a large randomized controlled clinical trial testing the Telephone Assessment and Skill-Building Kit program with 254 family caregivers of persons who have had strokes. Guided by a conceptual model derived from Lazarus' transactional approach to stress, data were analyzed using multiple regression with unhealthy days as the dependent variable and theoretically based factors as independent variables. RESULTS: Caregivers were mostly female (78%), White (71%), spouses (47%), or adult children (29%). Caregivers reported nine unhealthy days on average within the past month. A total of 37.8% of the variance in unhealthy days was explained by caregiver task difficulty, level of optimism, threat appraisal, depressive symptoms, and life changes with depressive symptoms being the strongest individual predictor because of shared variance. CLINICAL RELEVANCE: Unhealthy days is an important part of stroke family caregiver health. Factors associated with unhealthy days in this study provide areas to consider in future intervention development.
Assuntos
Cuidadores, Acidente Vascular Cerebral, Humanos, Feminino, Cuidadores/psicologia, Cuidadores/estatística & dados numéricos, Masculino, Pessoa de Meia-Idade, Acidente Vascular Cerebral/psicologia, Acidente Vascular Cerebral/complicações, Acidente Vascular Cerebral/enfermagem, Idoso, Adulto, Qualidade de Vida/psicologia, Depressão/psicologia, Estresse Psicológico/psicologiaRESUMO
This paper provides and overview of the community support services that may be available for people with dementia and their family carers. The authors introduce dementia, including the impact of the diagnosis on both the person with dementia and the wider family. Using a case study approach, the authors describe the support available, spanning health and social care and third sector organisations. They discuss how this support can enable people with dementia and their carers to maintain wellbeing and cope with the impact of dementia. This article will be of interest to community nurses, and health and social care professionals more generally, who may encounter families affected by dementia in community settings. Having a good knowledge of the support available and how to access it will allow community nurses to capitalise on the health promotion opportunities presented to them, when they come into contact with families affected by dementia in the course of their day-to-day practice.
Assuntos
Cuidadores, Demência, Apoio Social, Humanos, Demência/enfermagem, Cuidadores/psicologia, Enfermagem em Saúde Comunitária, Reino Unido, Família/psicologia, IdosoRESUMO
BACKGROUND: Stroke patients who are discharged from hospital because of limited access to rehabilitation facilities are cared for by lay caregivers who at times have limited knowledge of infection prevention and control (IPC). User-friendly educational interventions can help bridge this knowledge gap and enhance safe care of these persons. AIM: To describe the development and validation of educational interventions for home-based stroke patients. The validation process enhanced the reliability and validity of the job aid resulting in standardised quality patient care of stroke patients. SETTING: Mutasa district, Manicaland province, Zimbabwe. METHODS: The systematic six steps in quality intervention development guided the development of the job aid. Graphic designers assisted with development of diagrams and annotations. A purposively selected eight-member panel of IPC expert reviewers was invited to validate the job aid using a standardised validation tool. RESULTS: The panel agreed that the job aid's title, target group and media of instruction were adequately explained, and the background could be easily understood during practice. The content was approved with some modifications on the description of instructions to caregivers. Seven reviewers agreed that the materials used ensured understandability, acceptability, practicability and usability of the educational interventions by caregivers, and one reviewer was neutral in commenting effectiveness of the job aid. CONCLUSION: The developed job aid addressed knowledge barriers in IPC for caregivers, and the reviewers confirmed that the developed job aid was adequate for effective use by lay home-based caregivers.Contribution: Utilisation of this intervention standardises patient care practices.
Assuntos
Cuidadores, Serviços de Assistência Domiciliar, Acidente Vascular Cerebral, Humanos, Zimbábue, Serviços de Assistência Domiciliar/normas, Reprodutibilidade dos Testes, Controle de Infecções/métodos, Conhecimentos, Atitudes e Prática em Saúde, Feminino, MasculinoRESUMO
OBJECTIVES: Childhood cancer survivors' social reintegration may be hampered in low and middle-income countries. The nature and extent of social challenges and prejudices that survivors encounter in such settings are largely unknown. This study explores caregivers' perspectives on social reintegration and stigmatization of Kenyan childhood cancer survivors. METHODS: Caretakers of childhood cancer survivors (<18 years) were interviewed using mixed-methods questionnaires during home or clinic visits between 2021 and 2022. Stigma was assessed with an adjusted Social Impact Scale and risk factors were investigated. RESULTS: Caretakers of 54 survivors (median age 11 years) were interviewed. Families' income (93%) decreased since start of treatment. Caretakers (44%) often lost their jobs. Financial struggles (88%) were a burden that provoked conflicts within communities (31%). School fees for siblings became unaffordable (52%). Families received negative responses (26%) and were left or avoided (13%) by community members after cancer disclosure. Survivors and families were discriminated against because the child was perceived fragile, and cancer was considered fatal, contagious, or witchcraft. Survivors repeated school levels (58%) and were excluded from school activities (19%) or bullied (13%). Performance limitations of daily activities (p = 0.019), male sex (p = 0.032), solid tumors (p = 0.056) and a short time since treatment completion (p = 0.047) were associated with increased stigma. Caretakers recommended educational programs in schools and communities to raise awareness about cancer treatment and curability. CONCLUSIONS: Childhood cancer survivors and their families experienced difficulties with re-entry and stigmatization in society. Increasing cancer and survivorship awareness in schools and communities should facilitate social reintegration and prevent stigmatization.
Assuntos
Sobreviventes de Câncer, Cuidadores, Estigma Social, Humanos, Sobreviventes de Câncer/psicologia, Sobreviventes de Câncer/estatística & dados numéricos, Quênia, Masculino, Feminino, Criança, Cuidadores/psicologia, Adolescente, Inquéritos e Questionários, Adulto, Neoplasias/psicologia, Pré-Escolar, Pessoa de Meia-IdadeRESUMO
BACKGROUND: Given the rising prevalence of depression among older adults and the associated increase in caregiving responsibilities, understanding factors influencing caregiver burden is crucial. Previous research has not extensively explored the impact of caregivers' attributional styles, that is, how individuals interpret the causes of life events, on their care burden. AIM: This study examined the relationship between caregivers' attributional styles and their care burden for older patients with depression. METHODS: This cross-sectional study enrolled older adults aged ≥ 65 years diagnosed with depression and their caregivers. Depression was diagnosed according to the DSM-V criteria for Major Depressive Disorder or Persistent Depressive Disorder. Caregivers completed the Chinese Depression Caregiver Burden Scale (CDCBS) to assess care burden, the Hamilton Depression Rating Scale (HAM-D) to evaluate patient symptom severity, the Center for Epidemiological Studies Depression Scale (CES-D) for measuring caregivers' depression, and the Chinese Depression Patient Caregiver Attribution Style Scale (CDPCAS) to assess attributional styles. Hierarchical regression analysis was used to identify the factors independently associated with the caregiver's subjectively assessed care burden. RESULTS: The sample included 146 caregivers of geriatric patients with depression. Most depression patients were women (74.7%) with a mean age of 74.3 years, whereas the mean age of caregivers was 57.7 years. Hierarchical regression analysis identified that caregivers' gender (ß = - 0.14, p = .044), educational level (ß = 0.19, p = .008), caregivers' own depression assessed by the Center for Epidemiological Studies Depression Scale (ß = 0.41, p < .001), and attributional styles, particularly manipulation (ß = 0.29, p < .001) and illness/stress attributional style (ß = 0.23, p = .002) as independent factors associated with care burden. Patient symptom severity assessed using the Hamilton Depression Scale was not significantly correlated with care burden after controlling for attributional styles. CONCLUSIONS: Certain attributional styles, particularly the manipulation and illness/stress attributional styles, significantly increased self-reported care burden. These findings highlight the need for educational resources to change the attribution style, along with support systems and accessible mental health services for caregivers to potentially ease the care burden.
Assuntos
Cuidadores, Depressão, Humanos, Masculino, Feminino, Idoso, Cuidadores/psicologia, Estudos Transversais, Depressão/psicologia, Depressão/epidemiologia, Pessoa de Meia-Idade, Taiwan/epidemiologia, Idoso de 80 Anos ou mais, Sobrecarga do Cuidador/psicologia, Efeitos Psicossociais da DoençaRESUMO
BACKGROUND: Critically ill children require close monitoring to facilitate timely interventions throughout their hospitalisation. In low- and middle-income countries with a high disease burden, scarce paediatric critical care resources complicates effective monitoring. This study describes the monitoring practices for critically ill children in a paediatric high-dependency unit (HDU) in Malawi and examines factors affecting this vital process. METHODS: A formative qualitative study based on 21 in-depth interviews of healthcare providers (n = 12) and caregivers of critically ill children (n = 9) in the HDU along with structured observations of the monitoring process. Interviews were transcribed and translated for thematic content analysis. RESULTS: The monitoring of critically ill children admitted to the HDU was intermittent, using devices and through clinical observations. Healthcare providers prioritised the most critically ill children for more frequent monitoring. The ward layout, power outages, lack of human resources and limited familiarity with available monitoring devices, affected monitoring. Caregivers, who were present throughout admission, were involved informally in monitoring and flagging possible deterioration of their child to the healthcare staff. CONCLUSION: Barriers to the monitoring of critically ill children in the HDU were related to ward layout and infrastructure, availability of accurate monitoring devices and limited human resources. Potential interventions include training healthcare providers to prioritise the most critically ill children, allocate and effectively employ available devices, and supporting caregivers to play a more formal role in escalation.
Assuntos
Cuidadores, Estado Terminal, Pessoal de Saúde, Pesquisa Qualitativa, Centros de Atenção Terciária, Humanos, Malaui, Estado Terminal/terapia, Cuidadores/psicologia, Masculino, Feminino, Criança, Pessoal de Saúde/psicologia, Monitorização Fisiológica/métodos, Entrevistas como Assunto, Pré-Escolar, Lactente, Unidades de Terapia Intensiva Pediátrica, AdultoRESUMO
BACKGROUND: Globally, a fifth of the children continue to face chronic undernutrition with a majority of them situated in the Low- and Middle-Income Countries (LMIC). The rising numbers are attributed to aggravating factors like limited nutrition knowledge, poor feeding practices, seasonal food insecurity, and diseases. Interventions targeting behaviour change may reduce the devastating nutrition situation of children in the LMICs. OBJECTIVE: For the co-design of a Behaviour Change Communication (BCC) intervention for young children in rural Kenya, we aimed to identify the experiences, barriers, facilitators, and preferences of caregivers and stakeholders regarding nutrition and health counselling. DESIGN: We employed a qualitative study design and used a semi-structured interview guide. The in-depth interviews were recorded, transcribed, and analysed using content analysis, facilitated by the software NVivo. SETTING: Health and Demographic Surveillance System (HDSS) area in Siaya County, rural Kenya. PARTICIPANTS: We interviewed 30 caregivers of children between 6 and 23 months of age and 29 local stakeholders with experience in implementing nutrition projects in Kenya. RESULTS: Nutrition and health counselling (NHC) was usually conducted in hospital settings with groups of mothers. Barriers to counselling were long queues and delays, long distances and high travel costs, the inapplicability of the counselling content, lack of spousal support, and a high domestic workload. Facilitators included the trust of caregivers in Community Health Volunteers (CHVs) and counselling services offered free of charge. Preferences comprised (1) delivering of counselling by CHVs, (2) offering individual and group counselling, (3) targeting male and female caregivers. CONCLUSION: There is a disconnect between the caregivers' preferences and the services currently offered. Among these families, a successful BCC strategy that employs nutrition and health counselling should apply a community-based communication channel through trusted CHVs, addressing male and female caregivers, and comprising group and individual sessions.
Assuntos
Cuidadores, Aconselhamento, Pesquisa Qualitativa, População Rural, Humanos, Quênia, Cuidadores/psicologia, Aconselhamento/métodos, Lactente, Feminino, Masculino, Adulto, Entrevistas como AssuntoRESUMO
BACKGROUND: Family caregivers are vital for long-term care for persons with serious health-related suffering in Kerala. Long-term caregiving and ageing may become burdensome and detrimental to patients and caregivers. We compared the caregiver burden and quality-of-life of ageing caregivers with younger caregivers. We also explored the palliative care nurses' perceptions of the family caregivers' issues. METHODS: We did a mixed method study focusing on two groups: (i) three in-depth interviews and a cross-sectional survey among 221 caregivers of palliative care patients in five randomly selected panchayats (most peripheral tier of three-tier local self-government system in India concerned with governance of a village or small town) of Kollam district, Kerala, as part of development and validation of the Achutha Menon Centre Caregiver Burden Inventory; (ii) five in-depth interviews with purposively selected primary palliative care nurses as part of a study on local governments and palliative care. We used a structured interview schedule to collect cross-sectional data on sociodemographic and caregiving-related characteristics, caregiver burden, and health-related quality of life using the EuroQol EQ5D5L and interview guidelines on caregiver issues tailored based on participant type for qualitative interviews. RESULTS: Older caregivers comprised 28.1% of the sample and had significantly poorer health and quality-of-life attributes. More senior caregivers experiencing caregiver burden had the lowest mean scores of 0.877 (Standard deviation (SD 0.066, 95% confidence intervals (CI) 0.854-0.899) followed by younger caregivers with high burden (0.926, SD 0.090, 95% CI 0.907-0.945), older caregivers with low burden (0.935, SD 0.058, 95% CI 0.912-0.958) and younger caregivers with low burden (0.980, SD 0.041, 95% CI 0.970-0.990). Caregivers faced physical, psychological, social, and financial issues, leading to a caregiver burden. The relationships between the palliative care nurses and family caregivers were complex, and nurses perceived caregiver burden, but there were no specific interventions to address this. CONCLUSION: In our study from Kollam, Kerala, three out of ten caregivers of palliative care patients were 60 years of age or older. They had significantly lower health-related quality of life, particularly if they perceived caregiver burden. Despite being recognized by palliative care nurses, caregiver issues were not systematically addressed. Further research and suitable interventions must be developed to target such problems in the palliative care programme in Kerala.
Assuntos
Sobrecarga do Cuidador, Cuidadores, Cuidados Paliativos, Qualidade de Vida, Humanos, Qualidade de Vida/psicologia, Feminino, Masculino, Estudos Transversais, Índia, Pessoa de Meia-Idade, Adulto, Cuidadores/psicologia, Sobrecarga do Cuidador/psicologia, Idoso, Inquéritos e QuestionáriosRESUMO
OBJECTIVE: Africa presents a higher diabetic foot ulcer prevalence estimate of 7.2% against global figures of 6.3%. Engaging family members in self-care education interventions has been shown to be effective at preventing diabetes-related foot ulcers. This study culturally adapted and tested the feasibility and acceptability of an evidence-based footcare family intervention in Ghana. METHODS: The initial phase of the study involved stakeholder engagement, comprising Patient Public Involvement activities and interviews with key informant nurses and people with diabetes (N = 15). In the second phase, adults at risk of diabetes-related foot ulcers and nominated caregivers (N = 50 dyads) participated in an individually randomised feasibility trial of the adapted intervention (N = 25) compared to usual care (N = 25). The study aimed to assess feasibility outcomes and to identify efficacy signals on clinical outcomes at 12 weeks post randomisation. Patient reported outcomes were foot care behaviour, foot self-care efficacy, diabetes knowledge and caregiver diabetes distress. RESULTS: Adjustments were made to the evidence-based intervention to reflect the literacy, information needs and preferences of stakeholders and to develop a context appropriate diabetic foot self-care intervention. A feasibility trial was then conducted which met all recruitment, retention, data quality and randomisation progression criteria. At 12 weeks post randomisation, efficacy signals favoured the intervention group on improved footcare behaviour, foot self-care efficacy, diabetes knowledge and reduced diabetes distress. Future implementation issues to consider include the staff resources needed to deliver the intervention, family members availability to attend in-person sessions and consideration of remote intervention delivery. CONCLUSION: A contextual family-oriented foot self-care education intervention is feasible, acceptable, and may improve knowledge and self-care with the potential to decrease diabetes-related complications. The education intervention is a strategic approach to improving diabetes care and prevention of foot disease, especially in settings with limited diabetes care resources. Future research will investigate the possibility of remote delivery to better meet patient and staff needs. TRIAL REGISTRATION: Pan African Clinical Trials Registry (PACTR) - PACTR202201708421484: https://pactr.samrc.ac.za/TrialDisplay.aspx?TrialID=19363 or pactr.samrc.ac.za/Search.aspx.
Assuntos
Pé Diabético, Estudos de Viabilidade, Autocuidado, Humanos, Pé Diabético/prevenção & controle, Pé Diabético/terapia, Gana/epidemiologia, Feminino, Masculino, Pessoa de Meia-Idade, Idoso, Adulto, Cuidadores/psicologia, Família/psicologia, Conhecimentos, Atitudes e Prática em Saúde, Educação de Pacientes como Assunto/métodosRESUMO
The 'Tausi Feagaiga (Covenant Keeper) project was a partnership to support the traditional values of tausi matua (caring for one's elders). The partners included a non-governmental organization (Pacific Youth and Community Development), a faith-based organization (Roman Catholic Diocese of Samoa-Pago Pago), and an institute of higher education (University of Hawai'i John A. Burns School of Medicine). The project was created to address the lack of community-based health care such as home health or hospice, and families needing to work outside the home. A culturally based caregiving curriculum was developed to educate caregivers and improve their knowledge and skills. Using a train-the-trainer model, 125 caregivers were trained in family caregiving from 2016-2020. Training was conducted through an intensive workshop followed by practicum at Hope House, the Catholic Diocese home for the aged. Participants who expressed a willingness and competency were mentored to be trainers to continue the 'Tausi Feagaiga project. The mean self-rated confidence in caregiving improved significantly from 3.17 ± 1.02 (mean SD) pre workshop to 3.53 ± 0.71 post workshop (P = .001). Competence in geriatric syndromes was improved from 18.04 ± 4.27 to 21.31 ± 4.30 after attending the workshop (P < .001) and the feedback was extremely positive. Technical assistance was provided to obtain funding through American Samoa Medicaid State Agency to improve the existing infrastructure of Hope House, obtain much needed supplies, and increase ability to hire the participants. 'Tausi Feagaiga positively impacted the lives of the residents of Hope House, the course participants, the elders in the community, and those who care for them.
Assuntos
Cuidadores, Humanos, Cuidadores/psicologia, Cuidadores/educação, Cuidadores/estatística & dados numéricos, Samoa Americana, Havaí, Feminino, Masculino, EmpoderamentoRESUMO
BACKGROUND: Getting a diagnosis of dementia does not equate to equitable access to care. People with dementia and unpaid carers face many barriers to care, which can vary within, and across, different countries and cultures. With little evidence across different countries, the aim of this scoping exercise was to identify the different and similar types of inequalities in dementia across Europe, and provide recommendations for addressing these. METHODS: We conducted a brief online survey with INTERDEM and INTERDEM Academy members across Europe, and with members of Alzheimer Europe's European Working Group of People with Dementia and Carers in February and March 2023. Members were asked about whether inequalities in dementia care existed within their country; if yes, to highlight three key inequalities. Responses on barriers were coded into groups, and frequencies of inequalities were calculated. Highlighted inequalities were discussed and prioritised at face-to-face and virtual consensus meetings in England, Ireland, Italy, and Poland, involving people with dementia, unpaid carers, health and social care providers, and non-profit organisations. RESULTS: Forty-nine academics, PhD students, people with dementia and unpaid carers from 10 countries (Belgium, Denmark, Germany, Greece, Ireland, Italy, Poland, Malta, Netherlands, UK) completed the survey. The most frequently identified inequalities focused on unawareness and lack of information, higher level system issues (i.e. lack of communication among care professionals), lack of service suitability, and stigma. Other barriers included workforce training and knowledge, financial costs, culture and language, lack of single-point-of-contact person, age, and living location/postcode lottery. There was general consensus among people living dementia and care providers of unawareness as a key barrier in different European countries, with varied priorities in Ireland depending on geographical location. CONCLUSIONS: These findings provide a first insight on dementia inequalities across Europe, generate cross-country learnings on how to address these inequalities in dementia, and can underpin further solution-focused research that informs policy and key decision makers to implement changes.
Assuntos
Cuidadores, Demência, Disparidades em Assistência à Saúde, Humanos, Demência/terapia, Europa (Continente), Disparidades em Assistência à Saúde/estatística & dados numéricos, Feminino, Masculino, Inquéritos e Questionários, Acessibilidade aos Serviços de Saúde/estatística & dados numéricos, Idoso, Pessoa de Meia-Idade, AdultoRESUMO
OBJECTIVES: to map nursing interventions that empower the Family caregiver of the person with lower limb amputation for is role. METHODS: scoping review guided by Joanna Briggs Institute methodology conducted in different databases (including gray literature). RESULTS: six studies published between 2009 and 2021 were included. Interventions of counselling and support for patients and family; peer support interventions performed by a certified pair; involvement of caregivers or family members in support groups; and key interventions for patient and family caregiver psychological balance. Two studies discussed the importance of caregiver and amputee training and development of coping skills. Another study recommended Interventions of informative support for caregivers regarding care for the amputee and adaptation to home. CONCLUSIONS: results of this review allow the identification of recommendations (guidelines) for practice and recommendations/suggestions for interventions according with identified needs of family caregivers of patients with lower limb amputation.
Assuntos
Cuidadores, Humanos, Cuidadores/psicologia, Amputação Cirúrgica/psicologia, Extremidade Inferior/cirurgia, Empoderamento, Adaptação PsicológicaRESUMO
PURPOSE: This study comprehensively examines the disability acceptance experience of individuals who become disabled following accidents in the military after enlistment. METHODS: In-depth interviews and participative observation of two soldiers with disabilities are conducted. Data sources encompass the transcripts from these interviews, relevant news videos, and articles on the participants. A qualitative case study approach is applied to conduct both "within-case" and "cross-case" analyses. RESULTS: Although the two participants survived a crippling accidents, their military units did not actively attempt to resolve the accident. They grappled with despair and found it challenging to accept their new status as individuals with disability. Over time, they noticed changes in their personal relationships and started considering themselves burdens on their caregivers. However, despite encountering psychological challenges, which were marked by repeated setbacks and disappointments, the soldiers consistently made determined efforts to realize their objectives. Moreover, they strove to lead purposeful lives despite suffering the adversities caused by their disabilities. CONCLUSIONS: This study is the first in-depth examination of the disability acceptance experiences of soldiers with disability. The insights gleaned from our in-depth interviews will help formulate psychological and physical support systems for such individuals.
Assuntos
Pessoas com Deficiência, Militares, Pesquisa Qualitativa, Humanos, Pessoas com Deficiência/psicologia, Militares/psicologia, Masculino, Adulto, Adaptação Psicológica, Adulto Jovem, Entrevistas como Assunto, Cuidadores/psicologiaRESUMO
Many people in the advanced stages of dementia require full-time caregivers, most of whom are family members who provide informal (non-specialized) care. It is important to provide these caregivers with high-quality information to help them understand and manage the symptoms and behaviors of dementia patients. This study aims to evaluate ChatGPT, a chatbot built using the Generative Pre-trained Transformer (GPT) large language model, in responding to information needs and information seeking of such informal caregivers. We identified the information needs of dementia patients based on the relevant literature (22 articles were selected from 2442 retrieved articles). From this analysis, we created a list of 31 items that describe these information needs, and used them to formulate 118 relevant questions. We then asked these questions to ChatGPT and investigated its responses. In the next phase, we asked 15 informal and 15 formal dementia-patient caregivers to analyze and evaluate these ChatGPT responses, using both quantitative (questionnaire) and qualitative (interview) approaches. In the interviews conducted, informal caregivers were more positive towards the use of ChatGPT to obtain non-specialized information about dementia compared to formal caregivers. However, ChatGPT struggled to provide satisfactory responses to more specialized (clinical) inquiries. In the questionnaire study, informal caregivers gave higher ratings to ChatGPT's responsiveness on the 31 items describing information needs, giving an overall mean score of 3.77 (SD 0.98) out of 5; the mean score among formal caregivers was 3.13 (SD 0.65), indicating that formal caregivers showed less trust in ChatGPT's responses compared to informal caregivers. ChatGPT's responses to non-clinical information needs related to dementia patients were generally satisfactory at this stage. As this tool is still under heavy development, it holds promise for providing even higher-quality information in response to information needs, particularly when developed in collaboration with healthcare professionals. Thus, large language models such as ChatGPT can serve as valuable sources of information for informal caregivers, although they may not fully meet the needs of formal caregivers who seek specialized (clinical) answers. Nevertheless, even in its current state, ChatGPT was able to provide responses to some of the clinical questions related to dementia that were asked.
