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1.
Barbarói ; (58): 47-64, jan.-jun. 2021. ilus
Artigo em Português | LILACS, Index Psicologia - Periódicos | ID: biblio-1150688

RESUMO

Este estudo buscou investigar as perspectivas de adolescentes sobre a prática de cuidado dos irmãos. A amostra foi composta por seis adolescentes de ambos os sexos, com idades entre 11 e 19 anos. Os dados foram coletados por meio de entrevistas semiestruturadas e as informações foram submetidas à análise de conteúdo. Ressalta-se a importância das atividades desempenhadas pelos adolescentes no contexto familiar para o sustento financeiro da família. A percepção do cuidador sobre o cuidado dispensado aos irmãos abarcou aspectos positivos e negativos, sendo também considerada uma prática normal e rotineira. Dentre os pontos positivos, constatou-se transmitir algo de bom aos irmãos, os desafios e facilidades na realização de atividades de cuidado com os irmãos menores. A prática do cuidado pode contribuir para o sentimento de importância no contexto familiar, como também ser percebida como uma falha das mães no cumprimento de suas responsabilidades. As percepções negativas referiram-se à limitação dos tempos de lazer, à rotina estressante e à mediação de brigas entre os irmãos menores. Evidencia-se a importância de analisar o que essa prática representa para os adolescentes cuidadores, já que esta pode estar associada a sentimentos de desconforto, influenciar o bem-estar, bem como limitar a realização de atividades de lazer.(AU)


This study sought to investigate the perspectives of adolescents about their sibling caretaking. The sample consisted of six adolescents of both sexes, aged between 11 and 19 years old. The data were collected through semi-structured interviews and were submitted to content analysis. The importance of the activities performed by adolescents in the family context for the financial support of the family is emphasized. The caregiver's perception of the care given to siblings contained positive and negative aspects, and was also considered to be routine practice. Among the positives factors, it was found to transmit something good to the siblings, the challenges and facilities in carrying out care activities to younger siblings. The sibling caretaking practice can contribute to the feeling of importance in the family context, as well as being perceived as a failure of mothers in carrying out their responsibilities. Negative perceptions referred to the limitation of leisure time, the stressful routine and the mediation of fights between younger siblings. The importance of analyzing what this practice represents for young caregivers is evident, as it can be associated with uncomfortable feelings, influence well-being, as well as limit the performance of leisure activities.(AU)


Este estudio buscó investigar las perspectivas de los adolescentes sobre la práctica del cuidado de los hermanos. La muestra estuvo formada por seis adolescentes de ambos sexos, con edades comprendidas entre los 11 y los 19 años. La información se recopiló a través de entrevistas semiestructuradas y la información se sometió a análisis de contenido. Se enfatiza la importancia de las actividades que realizan los adolescentes en el contexto familiar para el apoyo financiero de la familia. La percepción del cuidador sobre el cuidado brindado a los hermanos contenía aspectos tanto positivos como negativos, y también se considera una práctica normal y rutinaria. Entre los puntos positivos, se encontró transmitir algo bueno a los hermanos, los desafíos y facilidades para realizar actividades de cuidado con los hermanos menores. La práctica del cuidado puede contribuir al sentimiento de importancia en el contexto familiar, además de ser percibida como un fracaso de las madres en el cumplimiento de sus responsabilidades. Las percepciones negativas se referían a la limitación del tiempo libre, la rutina estresante y la mediación de peleas entre hermanos menores. Es evidente la importancia de analizar lo que representa esta práctica para los cuidadores adolescentes, ya que puede asociarse a sentimientos de malestar, influir en el bienestar, así como limitar la realización de actividades de ocio.(AU)


Assuntos
Humanos , Adolescente , Adolescente , Cuidadores , Irmãos , Família
2.
Pan Afr Med J ; 38: 250, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34104298

RESUMO

Introduction: diabetic complications have been identified as the major causes of morbidity and mortality in persons with type 1 diabetes mellitus (T1DM). Lack of appropriate glycaemic control is a significant risk factor for the onset and progression of long term complications of diabetes. Identifying the determinants of good glycaemic control is therefore imperative. Methods: this was a cross-sectional, hospital-based study of children aged 3-18 years with T1DM. Subjects were consecutively enrolled after obtaining consent from their parents and assent from children aged ≥7 years. A questionnaire was completed recording their clinical history and sociodemographic variables. Their HbA1c was estimated and values ≤7.5% was defined as the cut-off for optimal glycaemic control. Results: seventy-one children with T1DM were enrolled for the study. Thirty-eight (53.5%) of them were males. Mean age (years) was 13.7±4. Mean age at onset of diabetes was 11.6 years (range: 3-16 years), mean duration of diabetes was 24.4 months (range: 4-84 months), mean HbA1c value was 10.5% (range: 6.4%-14%); a multivariate logistic regression analysis was performed to identify determinants of optimal glycaemic control. Only caregivers' involvement in diabetes management P<0.016, odd ratio 13.03 (95% CI: 1.60-105.95) was identified as determinant of good glycaemic control. Conclusion: our data suggest that of all the sociodemographic factors studied, caregivers' involvement in diabetes management was the only strong determinant for optimal glycaemic control.


Assuntos
Glicemia/análise , Cuidadores/estatística & dados numéricos , Diabetes Mellitus Tipo 1/terapia , Controle Glicêmico , Adolescente , Criança , Pré-Escolar , Estudos Transversais , Diabetes Mellitus Tipo 1/complicações , Feminino , Hemoglobina A Glicada/análise , Humanos , Masculino , Nigéria , Fatores de Risco , Inquéritos e Questionários
3.
BMC Health Serv Res ; 21(1): 557, 2021 Jun 07.
Artigo em Inglês | MEDLINE | ID: mdl-34098957

RESUMO

BACKGROUND: Older persons with polypharmacy are at increased risk of harm from medications. Therefore, it is important that physicians and nurses, together with the persons, evaluate medications to avoid hazardous polypharmacy. It remains unclear how healthcare professionals experience such evaluations. This study aimed to explore physicians' and nurses' experiences from evaluations of older persons' medications, and their related actions to manage concerns related to the evaluations. METHOD: Individual interview data from 29 physicians and nurses were collected and analysed according to the critical incident technique. RESULTS: The medication evaluation for older persons was influenced by the working conditions (e.g. healthcare professionals' clinical knowledge, experiences, and situational conditions) and working in partnership (e.g. cooperating around and with the older person). Actions taken to manage these evaluations were related to working with a plan (e.g. performing day-to-day work and planning for continued treatment) and collaborative problem-solving (e.g. finding a solution, involving the older person, and communicating with colleagues). CONCLUSION: Working conditions and cooperation with colleagues, the older persons and their formal or informal caregivers, emerged as important factors related to the medication evaluation. By adjusting their performance to variations in these conditions, healthcare professionals contributed to the resilience of the healthcare system by its capacity to prevent, notice and mitigate medication problems. Based on these findings, we hypothesize that a joint plan for continued treatment could facilitate such resilience, if it articulates what to observe, when to act, who should act and what actions to take in case of deviations from what is expected.


Assuntos
Pessoal de Saúde , Análise e Desempenho de Tarefas , Idoso , Idoso de 80 Anos ou mais , Cuidadores , Atenção à Saúde , Humanos , Polimedicação
4.
Soins ; 66(855): 54-56, 2021 May.
Artigo em Francês | MEDLINE | ID: mdl-34103141

RESUMO

An enclosed space with specific constraints, prison authorises volunteers to support seriously ill patients at the end of life. After receiving relevant training, these volunteers become members of an approved association and can enter compounds such as Fresnes penitentiary hospital in Val-de-Marne. While the missions of these volunteers have been disrupted by covid-19, solutions have been put in place to allow the connection with the prisoners to be maintained.


Assuntos
COVID-19 , Prisioneiros , Cuidadores , Humanos , Prisões , SARS-CoV-2 , Voluntários
5.
Sensors (Basel) ; 21(11)2021 May 25.
Artigo em Inglês | MEDLINE | ID: mdl-34070638

RESUMO

Quality of life (QoL) is an important parameter that affects the choice of therapy. Assessment of QoL and satisfaction with therapy using the rtCGM in children with T1D aged < 7 years was conducted. The study group consisted of 38 children with T1D aged < 7 years (34% aged 2-4, 66% aged 5-7 years), HbA1c: 6.53 ± 0.63%, duration of diabetes: 2.6 ± 1.6 years, treated with an rtCGM-augmented insulin pump for 1.92 ± 1.15 years. Two anonymous surveys were conducted: a. PedsQL3.0 diabetes standardized questionnaire-QoL assessment among age groups: 2-4/5-7 years. b. An original survey assessing the CGM use satisfaction. The mean scores in PedsQL3.0: communication 75%, worries 30%, treatment 70%, and problems associated with diabetes 65%. The QoL scale is: 0-19% very low, 20-39% low, 40-59% moderate, 60-79% high, 80-100% very high. The most frequently reported concerns were long-term diabetes complications and prick pain. Satisfaction with CGM use was high (68% in group aged 5-7 and 92% 2-4 years). Twenty-seven (71%) caregivers confirmed the positive effect of CGM on sleep. During the use of rtCGM a high quality of life was reported, and the quality of sleep in their caregivers was increased.


Assuntos
Diabetes Mellitus Tipo 1 , Qualidade de Vida , Glicemia , Automonitorização da Glicemia , Cuidadores , Criança , Pré-Escolar , Diabetes Mellitus Tipo 1/tratamento farmacológico , Humanos , Hipoglicemiantes , Insulina , Satisfação Pessoal
6.
BMC Health Serv Res ; 21(1): 537, 2021 Jun 01.
Artigo em Inglês | MEDLINE | ID: mdl-34074281

RESUMO

BACKGROUND: Telemedicine is increasingly utilized as an alternative to in person consultation. Current pandemic conditions are providing additional impetus to virtual care delivery. We compared both adolescent and caregiver (parent or guardian) attitudes towards telemedicine (here as tertiary center to remote health care location) as a crucial determinant of longer-term effectiveness. METHODS: This qualitative research study analyzed transcribed structured telephone interviews with both 11-18 year-old pediatric nephrology patients and their caregivers and performed a quantitative analysis of patient demographics, disease factors and distance to tertiary center vs. telemedicine center. RESULTS: The study was conducted in a medium-sized tertiary pediatric nephrology centre with a large catchment area of over 0.5 million square kilometers and 629,000 children and adolescents under 18 years of age. Eleven dyads of adolescents and caregivers were enrolled. Five adolescents were male. The mean age of the adolescents was 14.4 ± 2.5 years (range 11.2-18.0). The median distance to our tertiary center was 191 km (range 110-1378 km). Four adolescents lived more than 500 km from our tertiary center. The 11 adolescents had a total of 334 in person visits (mean 30 ± 25) and 86 telemedicine visits (mean 8 ± 7). A ratio of 2:1 telemedicine to in-person visits was favored; with caregivers more in favor of remote care than adolescents. Qualitative analysis found that experiences with telemedicine were distinguished by consultation-specific factors and contextual factors. Contextual factors (travel/cost savings) were valued for telemedicine by adolescents and caregivers. Consultation-specific factors, such as the ability to show the doctor physical symptoms, were more valued during in-person consultations, especially by adolescents. The overall visit type preference was related to the nature of the consultation. For regular check-ups, and for adolescents with less complex needs, participants felt that telemedicine offered a comparable experience to in-person visits. Adolescents with more complex conditions preferred in-person visits. CONCLUSIONS: Indiscriminate transfer to chronic care predicated on mainly telemedicine approach is not compatible with user expressed attitudes (especially among adolescents). Accurately mapping models of care to these attitudes is an essential determinant of effective management and longer-term engagement with potentially life-long health challenges.


Assuntos
Nefrologia , Telemedicina , Adolescente , Atitude , Cuidadores , Criança , Feminino , Humanos , Masculino , Pandemias
7.
BMC Geriatr ; 21(1): 338, 2021 06 02.
Artigo em Inglês | MEDLINE | ID: mdl-34078292

RESUMO

BACKGROUND: Being an informal carer of a person with dementia (PwD) can have a negative effect on the carer's health and quality of life, and spouse carers have been found to be especially vulnerable. Yet relatively little is known about the care provided and support received by spouse carers. This study compares spouse carers to other informal carers of PwDs regarding their care provision, the support received and the psychosocial impact of care. METHODS: The study was a cross-sectional questionnaire-based survey of a stratified random sample of the Swedish population aged 18 or over. The questionnaire explored how much care the respondent provided, the support received, and the psychosocial impact of providing care. Of 30,009 people sampled, 11,168 (37.7 %) responded, of whom 330 (2.95 %) were informal carers of a PwD. RESULTS: In comparison to non-spouse carers, spouse carers provided more care more frequently, did so with less support from family or the local authority, while more frequently experiencing negative impacts on their social life and psychological and physical health. Spouse carers also received more carer support and more frequently experienced a closeness in their relationship with the care-recipient. CONCLUSIONS: Spouse carers of PwD differed from non-spouse carers on virtually all aspects of their care situation. Policy and practice must be more sensitive to how the carer-care-recipient relationship shapes the experience of care, so that support is based on an understanding of the individual carer's actual needs and preferences rather than on preconceptions drawn from a generalised support model.


Assuntos
Cuidadores , Demência , Estudos Transversais , Demência/diagnóstico , Demência/epidemiologia , Demência/terapia , Humanos , Qualidade de Vida , Cônjuges , Suécia/epidemiologia
8.
Front Public Health ; 9: 611814, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33987161

RESUMO

Background: Studies on rehabilitation for falls after a stroke remain limited despite its impact being profound. This scenario justifies a deeper understanding of why falls in stroke rehabilitation received less attention. Current investigations on the perception of falls and stroke also proved inadequate. Therefore, this study aims to explore the perceptions and experiences of older Malaysian stroke survivors, spousal caregivers, and healthcare practitioners on falls in stroke rehabilitation. Method: A qualitative study of three focus groups with 18 individuals from one community-based stroke rehabilitation center was conducted. The discussions were audio-recorded, video-recorded, transcribed, summarized, and analyzed using thematic analysis. Results: Three themes emerged from the analysis: (i) perceived factors and consequences of falls after stroke, (ii) physical-based interventions predominate in rehabilitation for falls after stroke, and (iii) the role of home hazards in fall prevention is taken for granted. Although, awareness of falls is high, they are regarded as a peripheral issue in stroke. Rehabilitation interventions such as improved functionality are believed to be adequate and can indirectly prevent falls. Other interventions for fall prevention such as home hazards management are relatively less known. Conclusion: There is a need for more attention regarding home environment risk assessment and intervention among healthcare professionals, and more education for clients and caregivers is required. Although, other stroke interventions may also benefit stroke survivors, falls prevention should be a central component in stroke rehabilitation. As this study focused on a specific population, the findings should be validated with larger populations, and in diverse settings.


Assuntos
Reabilitação do Acidente Vascular Cerebral , Acidente Vascular Cerebral , Cuidadores , Atenção à Saúde , Humanos , Sobreviventes
9.
BMC Public Health ; 21(1): 931, 2021 05 17.
Artigo em Inglês | MEDLINE | ID: mdl-34001074

RESUMO

BACKGROUND: The prevalence of U.S. youth with prediabetes and type 2 diabetes (T2D) is increasing, with those from racial/ethnic minority and low socioeconomic status (SES) backgrounds at greater risk. Dietary fiber (e.g., whole grains and vegetables) is shown to be inversely associated with T2D risk, yet dietary recommendations are not being met. Caregivers play an important role in home food availability, but low SES neighborhoods are shown to have limited access to fiber-rich foods such as whole grains. The overall aim of this qualitative study was to assess caregiver perceptions about facilitators and barriers to preparing and offering whole grains that they received as part of the 16-week Food Overcoming Our Diabetes Risk (FoodRx) pilot study. METHODS: A convenience sample of 60 youth (8-17 years) with obesity and prediabetes were recruited from an urban pediatric weight management clinic to participate in the FoodRx pilot study. Caregivers accompanied youth to a baseline clinic visit and completed a survey that asked about individual and household characteristics. Exit interviews were conducted at the follow-up clinic visit with caregivers of all youth who completed the study (n = 48) in order to assess facilitators and barriers experienced when preparing and offering whole grains. Interview transcripts were coded using the constant comparative method and grounded theory approaches. RESULTS: Caregivers (n = 48) had a mean age of 43 years and were primarily female (n = 46) and Hispanic (71%). Main facilitators to preparing and offering whole grains in the home were caregivers' improved knowledge of whole grain health benefits and the development of strategies to encourage their children to consume whole grains (i.e., pairing whole grains with another liked food). A main barrier for caregivers was the lack of resources available to identify and prepare the novel whole grains that they received. CONCLUSION: Findings suggest that caregivers are receptive to incorporating more whole grains into home-prepared meals, but they may need additional nutrition and cooking education to improve their self-efficacy.


Assuntos
Diabetes Mellitus Tipo 2 , Estado Pré-Diabético , Adolescente , Adulto , Cuidadores , Criança , Grupos Étnicos , Feminino , Humanos , Grupos Minoritários , Projetos Piloto , Grãos Integrais
10.
BMJ Open ; 11(5): e050066, 2021 05 18.
Artigo em Inglês | MEDLINE | ID: mdl-34006561

RESUMO

INTRODUCTION: Despite community efforts to support and enable older and vulnerable people during the COVID-19 pandemic, many people with dementia and their family carers are still finding it difficult to adjust their daily living in light of the disruption that the pandemic has caused. There may be needs specific to black, Asian and minority ethnic (BAME) populations in these circumstances that remain thus far unexplored. OBJECTIVE: The aim of the study was to explore the effects of the COVID-19 pandemic on people living with dementia and their family carers of BAME backgrounds, in relation to their experiences of community dementia care and the impact on their daily lives. DESIGN: 15 participants (persons with dementia and carers) were recruited for semistructured qualitative interviews. Respondents were of South Asian and Afro-Caribbean backgrounds. We used thematic analysis to analyse our data from a constructivist perspective, which emphasises the importance of multiple perspectives, contexts and values. RESULTS: There were a number of ways that the COVID-19 pandemic has impacted BAME persons with dementia and carers with regard to their experiences of dementia community care and the impact on their everyday lives. In particular we identified eight key themes, with subthemes: fear and anxiety, food and eating (encompassing food shopping and eating patterns), isolation and identity, community and social relationships, adapting to COVID-19, social isolation and support structures, and medical interactions. Fear and anxiety formed an overarching theme that encompassed all others. DISCUSSION: This paper covers unique and underexplored topics in a COVID-19-vulnerable group. There is limited work with these groups in the UK and this is especially true in COVID-19. The results showed that such impacts were far-reaching and affected not only day-to-day concerns, but also care decisions with long-ranging consequences, and existential interests around fear, faith, death and identity.


Assuntos
Demência , Afro-Americanos , Cuidadores , Demência/epidemiologia , Grupos Étnicos , Humanos , Pandemias
11.
BMC Health Serv Res ; 21(1): 466, 2021 May 17.
Artigo em Inglês | MEDLINE | ID: mdl-34001093

RESUMO

BACKGROUND: We aimed to examine how caregiver perceptions of primary care affects care-seeking prior to pediatric non-urgent ED visits. METHODS: We performed a cross-sectional survey of caregivers of children presenting to a pediatric ED during weekday business hours and triaged as low acuity. We first compared caregiver sociodemographic characteristics, perceptions of primary care, and stated preference in care sites (ED vs PCP) for caregivers who had sought care from their child's PCP office versus had not sought care from their child's PCP office prior to their ED visit. We then examined odds of having sought care from their PCP office prior to their ED visit using multivariable logistic regression models sequentially including caregiver primary care perceptions and stated care site preferences along with caregiver sociodemographic characteristics. RESULTS: Of 140 respondents, 64 (46%) sought care from their child's PCP office prior to presenting to the ED. In unadjusted analysis, children insured by Medicaid or CHIP, caregivers identifying as Black, and caregivers with lower educational attainment were less likely to have sought PCP care before presenting to the ED (p < 0.005, each). Caregivers who had sought PCP care were more likely to prefer their PCP relative to the ED in terms of ease of travel, cost, and wait times (p < 0.001, all). When including these stated preferences in a multivariable model, child insurance, caregiver race, and caregiver education were no longer significantly associated with odds of having sought PCP care prior to their ED visit. CONCLUSIONS: Differential access to primary care may underlie observed demographic differences in non-urgent pediatric ED utilization.


Assuntos
Serviço Hospitalar de Emergência , Atenção Primária à Saúde , Cuidadores , Criança , Estudos Transversais , Humanos , Aceitação pelo Paciente de Cuidados de Saúde , Estados Unidos
12.
BMC Health Serv Res ; 21(1): 462, 2021 May 17.
Artigo em Inglês | MEDLINE | ID: mdl-34001120

RESUMO

BACKGROUND: In Sub-Saharan Africa, there are now a significant number of adolescents living with HIV (ALHIV), due to increased access to effective antiretroviral therapy. However, these adolescents are at high risk of dying during the transition to adult care due to various reasons, including lack of preparation for the transition and poor transition arrangements. More knowledge about this issue will lead to a better planned healthcare transition process and preparation for transition from pediatric care to adult care. The aim of this study was to explore the healthcare transitional experiences of ALHIV as they moved from pediatric to adult care. METHODS: A descriptive exploratory qualitative study was conducted. Purposive sampling method was used to recruit adolescents between 12 and 19 years old. Saturation was realized by the 10th participant. Data were analyzed using thematic content analysis. RESULTS: Four main themes emerged from the interview data: the transition process, factors facilitating the transition experience, challenges and coping mechanisms of the ALHIV during transition, and suggestions for improvement based on perceptions on the current transitioning approach. A key finding of this study was the sudden preparation for transition, linked to the absence of a structured transition protocol. Even though age was the main reason for transferring the participants from the pediatric to adult clinic, participants' age did not influence whether they attended clinic appointment on their own or accompanied by a care provider; it was dependent on the availability of their parents or caregivers. Participants' parents and adult family caregivers were also integrated into the transition process to some extent. We also found that most of the participants had good patient-provider relationship with their health care providers in both pediatric and adult clinics. CONCLUSION: Findings support the need to develop a structured healthcare transition policy and age-appropriate transition within the clinic environment. There is also a need for social and community support as ALHIV transition from pediatric to adult care.


Assuntos
Infecções por HIV , Transição para Assistência do Adulto , Adolescente , Adulto , Cuidadores , Criança , Gana , Infecções por HIV/tratamento farmacológico , Humanos , Estudos Retrospectivos , Adulto Jovem
13.
BMC Geriatr ; 21(1): 301, 2021 05 10.
Artigo em Inglês | MEDLINE | ID: mdl-33971847

RESUMO

BACKGROUND: The impact of COVID-19 restrictions on people living with dementia and their carers is an emerging focus of recent research determining how we can best support this population. People living with dementia have faced service curtailment, increased risk for COVID-19, as well as potential heightened deterioration. This study reports the experiences of people living with dementia and their family carers during the early months of the COVID-19 pandemic in England and the impact on them. METHODS: We recruited and remotely interviewed 30 people living with dementia in their own homes and 31 family carers, via video or telephone call in mid-2020. Data were transcribed and analysed using thematic analysis. RESULTS: People living with dementia often had a basic understanding of COVID-19 restrictions but could have difficulty translating this into personalised risk-appraisal of their own actions. Managing COVID-19 risks facing people living with dementia at home was largely done by family carers, exemplified by changes to living arrangements, which could strain or sustain caring relationships. Well-established familial caring relationships contributed to the wellbeing of the person living with dementia and their carer, as well as keeping to simple routines that included leaving the home for exercise and stimulation. People living with dementia reported some negative psychological and cognitive effects due to the imposed restrictions, such as increased apathy, irritability, or anxiety, which were fuelled by lack of social engagement. CONCLUSIONS: Structuring routine (remote) social interactions where possible could increase social engagement and improve wellbeing for people living with dementia, especially those with limited familial support in a post-COVID-19 context. As some care relationships had been restructured to manage COVID-19 risks, additional carer strain may emerge as a result of the impact on the independence of the person living with dementia and come to the attention of professionals in health and care services. People living with dementia and their carers highlighted the importance of maintaining or adapting routines which may be useful learning for professionals, although additional support may be necessary for those who are impacted by more severe or worsening symptoms of dementia.


Assuntos
Demência , Cuidadores , Controle de Doenças Transmissíveis , Demência/diagnóstico , Demência/epidemiologia , Inglaterra/epidemiologia , Humanos , Pandemias
14.
Stud Health Technol Inform ; 279: 1-9, 2021 May 07.
Artigo em Inglês | MEDLINE | ID: mdl-33965911

RESUMO

The benefits of eHealth interventions for people with dementia and their informal caregivers have been demonstrated in several studies. In times of contact restrictions, digital solutions have become increasingly important, especially for people with dementia and their mostly elderly caregiving relatives, which are at increased risk of severe illness from COVID-19. As in many other health areas, there is a lack of digital interventions in the dementia landscape that are successfully implemented (i.e., put into practice), especially digital interventions that are scientifically evaluated. Evaluated and proven effective digital interventions exist, but these often do not find their way from research into practice and stay on low-level implementation readiness. Within the project digiDEM Bayern, a digital platform with digital services and interventions for people affected by dementia (people with dementia, caregivers, volunteers and interested citizens) is established. As one digital intervention for informal caregivers, the 'Angehörigenampel' (caregivers' traffic-light) was developed, which is able to assess the physical and psychological burden of caregivers. This can help to counteract the health effects of caregiving burden early on before it is too late. The development of the digital intervention as a WordPress-plugin was kept generic so that it can easily be adapted to other languages on further websites. The 'intervention as a plugin' approach demonstrates an easy and flexible way of deploying eHealth interventions to other service providers, especially from other countries. The implementation barriers for other service providers are low enough for them to be able to easily integrate the eHealth intervention on their website, enabling more caregivers to benefit from the disseminated eHealth intervention.


Assuntos
Demência , Telemedicina , Idoso , Cuidadores , Demência/terapia , Humanos
15.
Stud Health Technol Inform ; 279: 36-37, 2021 May 07.
Artigo em Inglês | MEDLINE | ID: mdl-33965916

RESUMO

Autism spectrum disorder (ASD) diagnoses increased over the last decades, as reviews show comparing prevalence rates reported from different studies. Due to different effects of the disorder, personal support is required and provided by formal and/or informal caregivers in various activities of daily living. With the help of a customized smart home and interior design concept the aim is to enable people with ASD to live a more independent and self-reliant life. Following a participatory research approach, the end users are involved in the context of use and requirements definition, concept development, and later also in the implementation, and evaluation process. The solution shall assist end users in performing activities of daily living. The outcome of the work at hand is a set of modular functionalities (sensors, actuators, interior design solutions) to be integrated in a living environment specifically designed for people with ASD.


Assuntos
Atividades Cotidianas , Transtorno do Espectro Autista , Cuidadores , Humanos , Decoração de Interiores e Mobiliário
16.
BMJ Open ; 11(5): e046525, 2021 05 13.
Artigo em Inglês | MEDLINE | ID: mdl-33986062

RESUMO

OBJECTIVES: To understand the impact of the COVID-19 epidemic on asthma control in children based on caregivers' perspectives and experiences. DESIGN: This was a qualitative study deploying face-to-face, semistructured interviews. Thematic analysis was carried out to analyse the data. SETTING: Paediatric respiratory clinics in three tertiary hospitals. PARTICIPANTS: 16 caregivers providing unpaid asthma-related care and assistance to children under 14 years who had been diagnosed with asthma for more than 1 year and were not only treated with short-acting ß2-agonists. RESULTS: Six main themes were identified: (1) improved asthma control; (2) decreased willingness to seek medical care driven by fear; (3) increased adherence due to enhanced awareness of asthma control; (4) coping strategies for changes caused by COVID-19; (5) a new opportunity and (6) managing new challenges in asthma control. CONCLUSIONS: The COVID-19 outbreak and the measures in response to it have had significant impacts on asthma control among children. Children with asthma are advised to continue good asthma management, take their prescribed asthma medications as normal, wash their hands regularly and wear face masks. Regularly supported self-management and remote consultations should be provided during the COVID-19 pandemic. In addition, supporting people financially, providing continued medical support and alleviating any fear and anxiety should be considered. We anticipate that our findings will inform health promotion interventions.


Assuntos
Asma , Asma/tratamento farmacológico , Asma/epidemiologia , Cuidadores , Criança , Humanos , Pandemias , Pesquisa Qualitativa
17.
Intern Med ; 60(10): 1519-1524, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33994445

RESUMO

Objective The coronavirus disease 2019 (COVID-19) pandemic has resulted in a shortage of medical resources, including ventilators, personal protective equipment, medical staff, and hospital beds. We investigated the impact of COVID-19 in amyotrophic lateral sclerosis (ALS) patients, their families, caregivers, and medical experts. Methods We conducted a nationwide ALS webinar about COVID-19 in May 2020 and sent a questionnaire to those enrolled. Results A total of 135 participants (31 ALS patients; 23 families and caregivers of ALS patients; 81 medical experts) responded to this cross-sectional self-report questionnaire. The results showed that tracheostomy and invasive ventilation (TIV) was used in 22.6% of ALS patients, whereas 77.4% of ALS patients were not under TIV. Among non-TIV patients (n=24), 79.2% did not want TIV in the future. However, 47.4% of non-TIV patients not wanting a tracheostomy in advanced stages replied that they would want an emergency tracheostomy if they developed COVID-19-related pneumonia. These results suggest that ALS patients may be receptive to emergency treatments for reasons other than ALS. In addition, approximately half of the ALS patients agreed with the policy of not ventilating the elderly or ALS patients in case of a ventilator shortage. Furthermore, compared with medical experts, few ALS patients reported that the chance for ALS patients to obtain work was higher due to the increasing availability of remote work. Conclusions This survey indicates that the COVID-19 pandemic might be associated with increased distress about access to care and work, inducing contradictory responses and potential hopelessness among ALS patients.


Assuntos
Esclerose Amiotrófica Lateral , Idoso , Esclerose Amiotrófica Lateral/epidemiologia , Cuidadores , Estudos Transversais , Humanos , Japão/epidemiologia , Pandemias , Respiração Artificial
18.
BMC Health Serv Res ; 21(1): 411, 2021 May 03.
Artigo em Inglês | MEDLINE | ID: mdl-33941184

RESUMO

BACKGROUND: Being diagnosed with dementia is a confronting experience for any individual and their caregiver. However, a diagnosis provides opportunity for future preparation for management of the condition. This study investigated attitudes toward dementia and preferences for diagnosis among a sample of health service consumers in Japan. METHODS: Participants were patients or accompanying support persons (n = 217) who visited the specialty outpatient clinic of four hospital departments. The survey was conducted using an iPad with answers sent automatically to a secure server. The survey included items about the participants' most feared diseases and the reasons behind those fears, estimates of dementia prevalence in Japan, and preferences regarding a diagnosis of dementia and the reasons for their preference. RESULTS: The most feared disease was cancer (43.8 %), followed by dementia (18 %). Those selecting dementia most commonly reported practical, emotional and social impacts as the reasons why they most feared this condition. Almost all participants preferred to know the diagnosis of dementia as soon as possible for themselves, with significantly fewer preferring their spouse to know as soon as possible if they had dementia (95.9 % for self vs. 67.5 % for partner/spouse, p < 0.001). On average, participants estimated that 18.1 % of Japanese people are diagnosed with dementia by age 65, while they thought that 43.7 % of Japanese people are diagnosed with dementia by age 85. CONCLUSIONS: The findings highlight a need for community education about the significant impacts of dementia on the lives of individuals and their caregivers. People were more reluctant for their spouse to receive a diagnosis as soon as possible if they had dementia. Physicians should sensitively disclose diagnosis and ensure they involve both the patient and their relatives in discussions about diagnosis disclosure.


Assuntos
Demência , Idoso , Idoso de 80 Anos ou mais , Atitude , Cuidadores , Demência/diagnóstico , Demência/epidemiologia , Serviços de Saúde , Humanos , Japão/epidemiologia
19.
BMC Health Serv Res ; 21(1): 430, 2021 May 06.
Artigo em Inglês | MEDLINE | ID: mdl-33952263

RESUMO

BACKGROUND: Caring for a growing aging population using existing long-term care resources while simultaneously supporting and educating family caregivers, is a public health challenge. We describe the application of the Replicating Effective Programs (REP) framework, developed by the Centers for Disease Control Prevention and used in public health program implementation, to scale up an evidence-based family caregiver training intervention in the Veterans Affairs (VA) healthcare system. METHODS: From 2018 to 2020, clinicians at eight VA medical centers received REP-guided implementation including facilitation, technical assistance, and implementation tools to deliver the training program. The project team used the REP framework to develop activities across four distinct phases - (1) pre-conditions, (2) pre-implementation, (3) implementation, and (4) maintenance and evolution - and systematically tracked implementation facilitators, barriers, and adaptations. RESULTS: Within the REP framework, results describe how each medical center adapted implementation approaches to fit local needs. We highlight examples of how sites balanced adaptations and intervention fidelity. CONCLUSIONS: The REP framework shows promise for national expansion of the caregiver training intervention, including to non-VA systems of care, because it allows sites to adapt while maintaining intervention fidelity. TRIAL REGISTRATION: NCT03474380 . Date registered: March 22, 2018.


Assuntos
Cuidadores , Veteranos , Idoso , Aconselhamento , Promoção da Saúde , Humanos , Estados Unidos , United States Department of Veterans Affairs
20.
Ann Palliat Med ; 10(4): 4878-4881, 2021 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-33966426

RESUMO

Alzheimer's disease (AD) is a severe neurodegenerative disease which impacts the quality of life in elderly patients and imposes a significant burden to families and caregivers. The prolonged life expectancy and rapidly increasing world population significantly increased the morbidity. Although it has been widely reported that the aggregation of Beta amyloid and neurofilaments is the most significant pathological change. Currently, there is no effective drug therapy for AD, and the potential risks of pharmacotherapy remain concerns. This article reviews the recent research on Doll therapy (DT), a widely used non-drug therapy on AD patients, especially its clinical effectiveness and precautions in treating AD, with an attempt to further alleviate the mental symptoms and improve the health status of AD patients. Thus, nonpharmacological treatments of AD have become an area of intense research interest in recent years. DT is a person-centered therapy that can improve both the mental and cognitive status and the quality of life in AD patients. Although there remains ethical controversy about the DT on AD patients, its positive effect has been proved. Moreover, a standards manual is required to stipulate the range of application, the time course for treatment and withdraw the toy from the patients.


Assuntos
Doença de Alzheimer , Doenças Neurodegenerativas , Idoso , Doença de Alzheimer/terapia , Cuidadores , Humanos , Qualidade de Vida
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