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1.
JCO Glob Oncol ; 6: 1494-1509, 2020 10.
Artigo em Inglês | MEDLINE | ID: mdl-33017179

RESUMO

PURPOSE: The coronavirus disease 2019 (COVID-19) pandemic has had a global impact, and Singapore has seen 33,000 confirmed cases. Patients with cancer, their caregivers, and health care workers (HCWs) need to balance the challenges associated with COVID-19 while ensuring that cancer care is not compromised. This study aimed to evaluate the psychological effect of COVID-19 on these groups and the prevalence of burnout among HCWs. METHODS: A cross-sectional survey of patients, caregivers, and HCWs at the National Cancer Centre Singapore was performed over 17 days during the lockdown. The Generalized Anxiety Disorder-7 and Maslach Burnout Inventory were used to assess for anxiety and burnout, respectively. Self-reported fears related to COVID-19 were collected. RESULTS: A total of 624 patients, 408 caregivers, and 421 HCWs participated in the study, with a response rate of 84%, 88%, and 92% respectively. Sixty-six percent of patients, 72.8% of caregivers, and 41.6% of HCWs reported a high level of fear from COVID-19. The top concern of patients was the wide community spread of COVID-19. Caregivers were primarily worried about patients dying alone. HCWs were most worried about the relatively mild symptoms of COVID-19. The prevalence of anxiety was 19.1%, 22.5%, and 14.0% for patients, caregivers, and HCWs, respectively. Patients who were nongraduates and married, and caregivers who were married were more anxious. The prevalence of burnout in HCWs was 43.5%, with more anxious and fearful HCWs reporting higher burnout rates. CONCLUSION: Fears and anxiety related to COVID-19 are high. Burnout among HCWs is similar to rates reported prepandemic. An individualized approach to target the specific fears of each group will be crucial to maintain the well-being of these vulnerable groups and prevent burnout of HCWs.


Assuntos
Ansiedade/epidemiologia , Esgotamento Profissional/epidemiologia , Cuidadores/psicologia , Infecções por Coronavirus/psicologia , Neoplasias/psicologia , Pneumonia Viral/psicologia , Adulto , Idoso , Ansiedade/diagnóstico , Ansiedade/psicologia , Betacoronavirus/patogenicidade , Esgotamento Profissional/diagnóstico , Esgotamento Profissional/psicologia , Institutos de Câncer/organização & administração , Institutos de Câncer/normas , Infecções por Coronavirus/epidemiologia , Infecções por Coronavirus/prevenção & controle , Infecções por Coronavirus/transmissão , Estudos Transversais , Medo/psicologia , Feminino , Pessoal de Saúde/psicologia , Acesso aos Serviços de Saúde/organização & administração , Acesso aos Serviços de Saúde/normas , Humanos , Controle de Infecções/normas , Transmissão de Doença Infecciosa do Paciente para o Profissional/prevenção & controle , Transmissão de Doença Infecciosa do Profissional para o Paciente/prevenção & controle , Masculino , Oncologia/organização & administração , Oncologia/normas , Pessoa de Meia-Idade , Neoplasias/terapia , Pandemias/prevenção & controle , Pneumonia Viral/epidemiologia , Pneumonia Viral/prevenção & controle , Pneumonia Viral/transmissão , Prevalência , Singapura/epidemiologia , Carga de Trabalho/psicologia
2.
BMC Infect Dis ; 20(1): 738, 2020 Oct 07.
Artigo em Inglês | MEDLINE | ID: mdl-33028260

RESUMO

BACKGROUND: In accordance with international guidance for tuberculosis (TB) prevention, the Tanzanian Ministry of Health recommends isoniazid preventive therapy (IPT) for children aged 12 months and older who are living with HIV. Concerns about tolerability, adherence, and potential mistreatment of undiagnosed TB with monotherapy have limited uptake of IPT globally, especially among children, in whom diagnostic confirmation is challenging. We assessed IPT implementation and adherence at a pediatric HIV clinic in Tanzania. METHODS: In this prospective cohort study, eligible children living with HIV aged 1-15 years receiving care at the DarDar Pediatric Program in Dar es Salaam who screened negative for TB disease were offered a 6-month regimen of daily isoniazid. Patients could choose to receive IPT via facility- or community-based care. Parents/caregivers and children provided informed consent and verbal assent respectively. Isoniazid was dispensed with the child's antiretroviral therapy every 1-3 months. IPT adherence and treatment completion was determined by pill counts, appointment attendance, and self-report. Patients underwent TB symptom screening at every visit. RESULTS: We enrolled 66 children between July and December 2017. No patients/caregivers declined IPT. Most participants were female (n = 43, 65.1%) and the median age was 11 years (interquartile range [IQR] 8, 13). 63 (95.5%) participants chose the facility-based model; due to the small number of participants who chose the community-based model, valid comparisons between the two groups could not be made. Forty-nine participants (74.2%) completed IPT within 10 months. Among the remaining 17, 11 had IPT discontinued by their provider due to adverse drug reactions, 5 lacked documentation of completion, and 1 had unknown outcomes due to missing paperwork. Of those who completed IPT, the average monthly adherence was 98.0%. None of the participants were diagnosed with TB while taking IPT or during a median of 4 months of follow-up. CONCLUSIONS: High adherence and treatment completion rates can be achieved when IPT is integrated into routine, self-selected facility-based pediatric HIV care. Improved record-keeping may yield even higher completion rates. IPT was well tolerated and no cases of TB were detected. IPT for children living with HIV is feasible and should be implemented throughout Tanzania.


Assuntos
Antituberculosos/uso terapêutico , Infecções por HIV/patologia , Isoniazida/uso terapêutico , Tuberculose/prevenção & controle , Adolescente , Instituições de Assistência Ambulatorial , Antirretrovirais/uso terapêutico , Cuidadores/psicologia , Criança , Pré-Escolar , Feminino , Infecções por HIV/tratamento farmacológico , Humanos , Lactente , Masculino , Adesão à Medicação , Cooperação do Paciente , Estudos Prospectivos , Tanzânia , Resultado do Tratamento
3.
J Alzheimers Dis ; 77(2): 539-541, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32925073

RESUMO

The ongoing coronavirus disease 2019 (COVID-19) pandemic has substantially affected patients with dementia and their caregivers. However, we found not all Alzheimer's disease (AD) patients were afraid of COVID-19 infection. Therefore, we investigated the association between rate of awareness of COVID-19 and depressive tendency in AD. 126 consecutive outpatients with AD were enrolled in this study from May 25, on the day when the declaration of emergency was lifted in Japan, through June 30, 2020. In addition to routine psychological tests, the participants were asked the following two questions: "Do you know COVID-19?" and "Why are you wearing a face mask?". Moderate to severe AD patients were found to have a low COVID-19 recognition rate and did not fully understand why they were wearing face masks. In addition, because they did not understand the seriousness of the COVID-19 outbreak, their Geriatric Depression Scale scores were also substantially lower. These results may appear to simply indicate that people with severe dementia are unaware of current events. However, these results provide insights into how to care for patients with dementia and how to allocate the time and support of our limited staff during the COVID-19 outbreak.


Assuntos
Doença de Alzheimer , Conscientização , Infecções por Coronavirus , Competência Mental , Pandemias , Assistência ao Paciente , Pneumonia Viral , Idoso , Doença de Alzheimer/diagnóstico , Doença de Alzheimer/psicologia , Doença de Alzheimer/virologia , Betacoronavirus , Cuidadores/psicologia , Controle de Doenças Transmissíveis/organização & administração , Infecções por Coronavirus/epidemiologia , Infecções por Coronavirus/prevenção & controle , Infecções por Coronavirus/psicologia , Feminino , Humanos , Japão/epidemiologia , Masculino , Pandemias/prevenção & controle , Assistência ao Paciente/métodos , Assistência ao Paciente/tendências , Pneumonia Viral/epidemiologia , Pneumonia Viral/prevenção & controle , Pneumonia Viral/psicologia , Sistemas de Apoio Psicossocial , Índice de Gravidade de Doença
4.
Soins Gerontol ; 25(145): 34-39, 2020.
Artigo em Francês | MEDLINE | ID: mdl-32988486

RESUMO

The malaise in the gerontology sector can be accounted for and new explanations for caregiver burnout can be proposed. Through a review of the literature, an overview of the issue can be drawn up and a theoretical and clinical reflection can be initiated. After having contextualized the extent of the phenomenon, we will present the plural conceptions of burn out and its origin. A new look will be taken at this syndrome by raising a set of factors potentially involved in the exhaustion of caregivers.


Assuntos
Esgotamento Profissional , Cuidadores/psicologia , Geriatria , Idoso , Humanos
5.
Soins Gerontol ; 25(145): 40-45, 2020.
Artigo em Francês | MEDLINE | ID: mdl-32988487

RESUMO

A significant proportion of elderly people suffering from neurodegenerative pathologies are cared for by an informal caregiver. From the earliest stages of the disease, the psychological and behavioural disorders of patients constitute stress and anxiety factors for their caregivers. Mindfulness meditation has proven its usefulness in the management of anxiety. A study proposes caregiver management based on a mindfulness meditation program.


Assuntos
Cuidadores/psicologia , Meditação/psicologia , Atenção Plena , Idoso , Ansiedade/prevenção & controle , Humanos , Estresse Psicológico/psicologia
6.
Soins ; 65(845): 10-13, 2020 May.
Artigo em Francês | MEDLINE | ID: mdl-32862956

RESUMO

There is a close link between care and communication. The purpose of the study is to evaluate therapeutic communication when bed washing patients, which dependent patients may experience as an aggressive treatment. Improved comfort, improved serenity, less intense pain, lower pulse and blood pressure have been observed in patients looked after by caregivers practising therapeutic communication.


Assuntos
Banhos , Cuidadores/psicologia , Comunicação , Relações Profissional-Paciente , Humanos , Resultado do Tratamento
7.
Soins ; 65(845): 25-26, 2020 May.
Artigo em Francês | MEDLINE | ID: mdl-32862960

RESUMO

In terms of health, women and men are not on equal footing. Not only due to biological factors, but also in the social, cultural and economic realms. Gender bias influences medical practice, research, teaching and behaviour of both caregivers and patients. This bias results in situations of inequality as well as gender discrimination in access to health and medical care. Taking gender into account in matters of health is a major bioethical issue.


Assuntos
Disparidades nos Níveis de Saúde , Sexismo , Cuidadores/psicologia , Feminino , Disparidades em Assistência à Saúde , Humanos , Masculino , Fatores Sexuais , Fatores Socioeconômicos
8.
Vaccine ; 38(44): 6882-6888, 2020 10 14.
Artigo em Inglês | MEDLINE | ID: mdl-32912643

RESUMO

INTRODUCTION: The Changchun Changsheng Vaccine Incident (CCVI) occurred mid-2018 and involved irregularities in the manufacture and quality control of diphtheria-tetanus-acellular-pertussis and rabies vaccines. This study investigates vaccine confidence amongst Chinese caregivers and vaccination-service providers (VSPs) six months after the CCVI. METHODS: Quantitative surveys were conducted in January 2019 with 2124 caregivers of children and 555 VSPs in three areas in China. The proportions of respondents who agreed to the four statements from the Vaccine Confidence Index™ were used to measure vaccine confidence. Descriptive and univariate analyses were performed to study the level of vaccine confidence. Semi-structured interviews were conducted with 48 caregivers, 43 VSPs and 9 immunization program managers. Interviews were analyzed thematically using a combination of deductive and inductive coding. Media surveillance was conducted to monitor public responses to the CCVI. RESULTS: Media surveillance indicated that public attention to vaccine-related issues increased sharply immediately post-CCVI but declined rapidly thereafter. Six months post-CCVI, 96.0% of caregivers and the same proportion of VSPs reported that vaccination was important and compatible with their religious beliefs. 82.7% and 88.2% of caregivers agreed that vaccines were safe and effective. 92.8% and 94.6% of VSPs agreed that vaccines were safe and effective. Both caregivers and VSPs reported an immediate decline in vaccine confidence post-CCVI. In most cases this trust was regained over time following government and public health responses, however some people remained hesitant about vaccinating their children. Many VSPs were overwhelmed by consultations, workload and psychological pressure after the CCVI. CONCLUSION: After an initial decline, vaccine confidence recovered to pre-incident levels six months after the CCVI. However, some caregivers moved from the higher to the lower end of the vaccine confidence spectrum, pointing to the need to promote the acceptance of vaccination especially given the need for new vaccines to control the coronavirus epidemic.


Assuntos
Cuidadores/psicologia , Corpo Clínico/psicologia , Controle de Qualidade , Retirada de Medicamento Baseada em Segurança , Confiança/psicologia , Adulto , China , Estudos Transversais , Vacinas contra Difteria, Tétano e Coqueluche Acelular/efeitos adversos , Feminino , Humanos , Programas de Imunização , Masculino , Pessoa de Meia-Idade , Vacinas Antirrábicas/efeitos adversos , Inquéritos e Questionários , Vacinação/estatística & dados numéricos , Recusa de Vacinação/psicologia
9.
Rech Soins Infirm ; (141): 70-77, 2020 06.
Artigo em Francês | MEDLINE | ID: mdl-32988193

RESUMO

Patient education prior to discharge from hospital is a practice developed under the name of "discharge education" (DE) in the Anglo-Saxon countries. This new form of patient education targets acute and sometimes chronic patients and concerns all hospital specialties ; it aims to facilitate the transition "hospitalhome" and avoid early readmissions. In this article we want to outline a framework of indications and effects of DE, starting from an analysis of the international literature, and identify its quality criteria in order to forecast the conditions of its application to our context. A scoping review allowed us to examine 43 scientific studies specifically related to the description, analysis and evaluation of discharge education, as well as some recommendations. Almost half of the studies are published in Nursing Science journals. DE is an intense and short educational intervention (30 minutes to an hour) delivered mainly in acute situations. Paediatrics has the largest number of publications together with post-operative care. In most studies, DE is effective in improving clinical and psychosocial parameters, reducing early admissions, increasing skills and patient compliance. To achieve its goals, DE must be structured and include systematic follow up. Focused on the patient's needs and his learning ability, it uses a specific interactive pedagogy to which caregivers must be trained. The analysis of the international research leaves no doubt about the positive contributions of DE. It would be important for caregivers and policymakers to look at it as an opportunity to improve the quality of care and to humanize it.


Assuntos
Alta do Paciente , Educação de Pacientes como Assunto , Cuidadores/psicologia , Humanos , Relações Profissional-Paciente , Qualidade da Assistência à Saúde
10.
BMC Geriatr ; 20(1): 333, 2020 09 09.
Artigo em Inglês | MEDLINE | ID: mdl-32900360

RESUMO

BACKGROUND: The lockdown imposed in the UK on the 23rd of March and associated public health measures of social distancing are likely to have had a great impact on care provision. The aim of this study was to explore the decision-making processes of continued paid home care support for dementia in the time of COVID-19. METHODS: Unpaid carers caring for a person living with dementia (PLWD) who were accessing paid home care before COVID-19 and residing in the UK were eligible to take part. Participants were interviewed over the phone and asked about their experiences of using paid home care services before and since COVID-19, and their decision-making processes of accessing paid home care since the outbreak and public health restrictions. RESULTS: Fifteen unpaid carers, who were also accessing paid care support for the PLWD before COVID-19, were included in the analysis. Thematic analysis identified three overarching themes: (1) Risk; (2) Making difficult choices and risk management; and (3) Implications for unpaid carers. Many unpaid carers decided to discontinue paid carers entering the home due to the risk of infection, resulting in unpaid carers having to pick up the care hours to support the person living with dementia. CONCLUSIONS: This is the first study to report on the impact of COVID-19 on paid home care changes in dementia. Findings raise implications for providing better Personal Protective Equipment for paid carers, and to support unpaid carers better in their roles, with the pandemic likely to stay in place for the foreseeable future.


Assuntos
Betacoronavirus , Cuidadores/psicologia , Infecções por Coronavirus/epidemiologia , Demência/terapia , Acesso aos Serviços de Saúde , Serviços de Assistência Domiciliar/economia , Pneumonia Viral/epidemiologia , Idoso , Cuidadores/economia , Demência/economia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pandemias , Pesquisa Qualitativa
11.
Eur J Public Health ; 30(Supplement_4): iv22-iv27, 2020 Sep 01.
Artigo em Inglês | MEDLINE | ID: mdl-32894300

RESUMO

The present study explores the situation of migrant carers in long-term care (LTC) in European Union Member States and the disruptions caused by the COVID-19 pandemic from a public health perspective. The aim is to bring LTC migrant carers into health workforce research and highlight a need for trans-sectoral and European heath workforce governance. We apply an exploratory approach based on secondary sources, document analysis and expert information. A framework comprising four major dimensions was developed for data collection and analysis: LTC system, LTC health labour market, LTC labour migration policies and specific LTC migrant carer policies during the COVID-19 crisis March to May 2020. Material from Austria, Italy, Germany, Poland and Romania was included in the study. Results suggest that undersupply of carers coupled with cash benefits and a culture of family responsibility may result in high inflows of migrant carers, who are channelled in low-level positions or the informal care sector. COVID-19 made the fragile labour market arrangements of migrant carers visible, which may create new health risks for both the individual carer and the population. Two important policy recommendations are emerging: to include LTC migrant carers more systematically in public health and health workforce research and to develop European health workforce governance which connects health system needs, health labour markets and the individual migrant carers.


Assuntos
Cuidadores/psicologia , Emigração e Imigração , Pessoal Profissional Estrangeiro , Mão de Obra em Saúde , Assistência de Longa Duração , Política Pública , Betacoronavirus , Infecções por Coronavirus , Europa (Continente) , União Europeia , Governo , Serviços de Saúde para Idosos/organização & administração , Humanos , Assistência de Longa Duração/organização & administração , Pandemias , Pneumonia Viral , Saúde Pública
12.
J Pediatr Psychol ; 45(9): 983-989, 2020 10 01.
Artigo em Inglês | MEDLINE | ID: mdl-32940702

RESUMO

OBJECTIVE: We recently transitioned from in-person delivery of a brief behavioral parent intervention to telepsychology delivery to meet families' needs during the COVID-19 pandemic. In this topical review, we describe how we used treatment fidelity as a guiding principle to orient adaptations for telepsychology, as well as preliminary findings and early lessons learned in this implementation. Methods: Using rapid-cycle quality improvement methods, we adapted a brief parent training group (Bootcamp for Attention-Deficit/Hyperactivity Disorder; BC-ADHD) to three groups of caregivers (i.e., 5-7 families) of school-aged children with ADHD (n = 20; 85% males). Families were from the following ethnic backgrounds: 75% White non-Hispanic, 15% White Hispanic, and 10% Black. Clinicians completed measures on their implementation experience. Observers completed measures on content/process fidelity and attendance. Caregivers completed measures on demographics, treatment satisfaction, and telepsychology experience. RESULTS: Telepsychology BC-ADHD can be implemented with comparably high levels of content and process fidelity and treatment satisfaction to in-person groups; and it appears to be feasible and acceptable to caregivers. Caregiver and clinician qualitative feedback revealed themes of appreciating the convenience of telepsychology, while experiencing some challenges in relating to others and sharing over video. CONCLUSIONS: When treatment fidelity is used as a guiding tool, telepsychology parent training groups can be delivered with high fidelity and appear to be acceptable and feasible to caregivers and clinicians. Future research using larger and more diverse samples, multimethod and multi-informant measurement approaches, and controlled designs is needed to further assess the generalizability and efficacy of telepsychology parent training groups.


Assuntos
Transtorno do Deficit de Atenção com Hiperatividade/terapia , Terapia Comportamental/métodos , Betacoronavirus , Infecções por Coronavirus/prevenção & controle , Pandemias/prevenção & controle , Pais/psicologia , Pneumonia Viral/prevenção & controle , Psicoterapia de Grupo/métodos , Telemedicina/métodos , Transtorno do Deficit de Atenção com Hiperatividade/psicologia , Cuidadores/psicologia , Criança , Pré-Escolar , Feminino , Humanos , Masculino
13.
Cochrane Database Syst Rev ; 9: CD012780, 2020 09 30.
Artigo em Inglês | MEDLINE | ID: mdl-32996586

RESUMO

BACKGROUND: Serious illness is often characterised by physical/psychological problems, family support needs, and high healthcare resource use. Hospital-based specialist palliative care (HSPC) has developed to assist in better meeting the needs of patients and their families and potentially reducing hospital care expenditure. There is a need for clarity on the effectiveness and optimal models of HSPC, given that most people still die in hospital and also to allocate scarce resources judiciously. OBJECTIVES: To assess the effectiveness and cost-effectiveness of HSPC compared to usual care for adults with advanced illness (hereafter patients) and their unpaid caregivers/families. SEARCH METHODS: We searched CENTRAL, CDSR, DARE and HTA database via the Cochrane Library; MEDLINE; Embase; CINAHL; PsycINFO; CareSearch; National Health Service Economic Evaluation Database (NHS EED) and two trial registers to August 2019, together with checking of reference lists and relevant systematic reviews, citation searching and contact with experts to identify additional studies. SELECTION CRITERIA: We included randomised controlled trials (RCTs) evaluating the impact of HSPC on outcomes for patients or their unpaid caregivers/families, or both. HSPC was defined as specialist palliative care delivered by a palliative care team that is based in a hospital providing holistic care, co-ordination by a multidisciplinary team, and collaboration between HSPC providers and generalists. HSPC was provided to patients while they were admitted as inpatients to acute care hospitals, outpatients or patients receiving care from hospital outreach teams at home. The comparator was usual care, defined as inpatient or outpatient hospital care without specialist palliative care input at the point of entry into the study, community care or hospice care provided outside of the hospital setting. DATA COLLECTION AND ANALYSIS: We used standard methodological procedures expected by Cochrane. We assessed risk of bias and extracted data. To account for use of different scales across studies, we calculated standardised mean differences (SMDs) with 95% confidence intervals (CIs) for continuous data. We used an inverse variance random-effects model. For binary data, we calculated odds ratio (ORs) with 95% CIs. We assessed the evidence using GRADE and created a 'Summary of findings' table. Our primary outcomes were patient health-related quality of life (HRQoL) and symptom burden (a collection of two or more symptoms). Key secondary outcomes were pain, depression, satisfaction with care, achieving preferred place of death, mortality/survival, unpaid caregiver burden, and cost-effectiveness. Qualitative data was analysed where available. MAIN RESULTS: We identified 42 RCTs involving 7779 participants (6678 patients and 1101 caregivers/family members). Twenty-one studies were with cancer populations, 14 were with non-cancer populations (of which six were with heart failure patients), and seven with mixed cancer and non-cancer populations (mixed diagnoses). HSPC was offered in different ways and included the following models: ward-based, inpatient consult, outpatient, hospital-at-home or hospital outreach, and service provision across multiple settings which included hospital. For our main analyses, we pooled data from studies reporting adjusted endpoint values. Forty studies had a high risk of bias in at least one domain. Compared with usual care, HSPC improved patient HRQoL with a small effect size of 0.26 SMD over usual care (95% CI 0.15 to 0.37; I2 = 3%, 10 studies, 1344 participants, low-quality evidence, higher scores indicate better patient HRQoL). HSPC also improved other person-centred outcomes. It reduced patient symptom burden with a small effect size of -0.26 SMD over usual care (95% CI -0.41 to -0.12; I2 = 0%, 6 studies, 761 participants, very low-quality evidence, lower scores indicate lower symptom burden). HSPC improved patient satisfaction with care with a small effect size of 0.36 SMD over usual care (95% CI 0.41 to 0.57; I2 = 0%, 2 studies, 337 participants, low-quality evidence, higher scores indicate better patient satisfaction with care). Using home death as a proxy measure for achieving patient's preferred place of death, patients were more likely to die at home with HSPC compared to usual care (OR 1.63, 95% CI 1.23 to 2.16; I2 = 0%, 7 studies, 861 participants, low-quality evidence). Data on pain (4 studies, 525 participants) showed no evidence of a difference between HSPC and usual care (SMD -0.16, 95% CI -0.33 to 0.01; I2 = 0%, very low-quality evidence). Eight studies (N = 1252 participants) reported on adverse events and very low-quality evidence did not demonstrate an effect of HSPC on serious harms. Two studies (170 participants) presented data on caregiver burden and both found no evidence of effect of HSPC (very low-quality evidence). We included 13 economic studies (2103 participants). Overall, the evidence on cost-effectiveness of HSPC compared to usual care was inconsistent among the four full economic studies. Other studies that used only partial economic analysis and those that presented more limited resource use and cost information also had inconsistent results (very low-quality evidence). Quality of the evidence The quality of the evidence assessed using GRADE was very low to low, downgraded due to a high risk of bias, inconsistency and imprecision. AUTHORS' CONCLUSIONS: Very low- to low-quality evidence suggests that when compared to usual care, HSPC may offer small benefits for several person-centred outcomes including patient HRQoL, symptom burden and patient satisfaction with care, while also increasing the chances of patients dying in their preferred place (measured by home death). While we found no evidence that HSPC causes serious harms, the evidence was insufficient to draw strong conclusions. Although these are only small effect sizes, they may be clinically relevant at an advanced stage of disease with limited prognosis, and are person-centred outcomes important to many patients and families. More well conducted studies are needed to study populations with non-malignant diseases and mixed diagnoses, ward-based models of HSPC, 24 hours access (out-of-hours care) as part of HSPC, pain, achieving patient preferred place of care, patient satisfaction with care, caregiver outcomes (satisfaction with care, burden, depression, anxiety, grief, quality of life), and cost-effectiveness of HSPC. In addition, research is needed to provide validated person-centred outcomes to be used across studies and populations.


Assuntos
Cuidadores/estatística & dados numéricos , Serviços Hospitalares de Assistência Domiciliar/economia , Cuidados Paliativos/economia , Cuidados Paliativos/métodos , Assistência Terminal/economia , Assistência Terminal/métodos , Assistência Ambulatorial/economia , Viés , Cuidadores/psicologia , Análise Custo-Benefício , Família , Insuficiência Cardíaca/mortalidade , Insuficiência Cardíaca/terapia , Hospitalização/economia , Humanos , Neoplasias/mortalidade , Neoplasias/terapia , Manejo da Dor/estatística & dados numéricos , Satisfação do Paciente , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto , Avaliação de Sintomas/estatística & dados numéricos
14.
Pediatrics ; 146(4)2020 10.
Artigo em Inglês | MEDLINE | ID: mdl-32938778

RESUMO

BACKGROUND: Involvement with Child Protective Services (CPS) provides an opportunity to recognize those children at risk for ongoing adverse childhood experiences (ACEs). The relationship between ACEs and child health among CPS-involved children and the role of primary care providers (PCPs) in moderating this relationship is unknown. METHODS: We conducted a convergent mixed-methods study of caregivers of children age 2 to 12 years with a CPS finding of physical abuse, modeling the association between cumulative ACEs and child health-related quality of life (HRQoL) using the PedsQL4.0, a validated 23-item survey of multidimensional health, with and without the moderator of a patient-centered medical home. Interviews elicited descriptions of a child's experience with ACEs, the impact of ACEs on child health, and the role of a PCP in this context. RESULTS: One hundred seventy-eight surveyed caregivers reported a mean of 5.5 (±3.3) ACE exposures per child. In a fully adjusted model, each ACE resulted in a 1.3-point (95% confidence interval: 0.7-2.0) reduction in HRQoL, a clinically important difference in HRQoL associated with ACE exposures. This association was explained by reduced psychosocial HRQoL and was not moderated by a patient-centered medical home. Twenty-seven interviewed caregivers described the influence of ACEs on a child's health. Many felt that a trusted PCP could support a child's well-being after such experiences. CONCLUSIONS: Children with CPS involvement have ACE exposures that are associated with reduced HRQoL. Although PCPs are often unaware of CPS involvement or other ACEs, many caregivers welcome the support of a child's PCP in improving child well-being after adversity.


Assuntos
Experiências Adversas da Infância/estatística & dados numéricos , Cuidadores/psicologia , Maus-Tratos Infantis/psicologia , Saúde da Criança , Serviços de Proteção Infantil , Qualidade de Vida/psicologia , Adulto , Cuidadores/estatística & dados numéricos , Criança , Pré-Escolar , Intervalos de Confiança , Feminino , Humanos , Masculino , Assistência Centrada no Paciente , Pesquisa Qualitativa , Tamanho da Amostra
15.
Hu Li Za Zhi ; 67(4): 39-49, 2020 Aug.
Artigo em Chinês | MEDLINE | ID: mdl-32748378

RESUMO

BACKGROUND: The rapid aging of the global population has sharply increased the prevalence of dementia. Most people with dementia (PwD) live at home and are cared for by family caregivers. The complicated care needs of PwD and family caregivers necessitate the provision of comprehensive and transdisciplinary assessment and service support. PURPOSE: The purpose of this study was to construct the contents of the "Assessment Tool for Family Care Needs of People with Dementia" using a transdisciplinary perspective and to establish the reliability and validity of this tool. METHODS: Based on a literature review and clinical experience, the preliminary items of the assessment tool were drawn up and pilot tests of the case were conducted in the Clinic for Dementia Care. The transdisciplinary research team discussed the pilot tests and verified the preliminary items, and then experts were invited to assess the content validity of the assessment tool. Next, quota sampling was conducted in accordance with the national proportion of the severity of dementia and the questionnaire surveys were administered in an outpatient department of neurology at a medical center in southern Taiwan. Two hundred dyads of PwD and their family caregivers participated in the survey. Reliability and validity analysis of the data were completed. RESULTS: The assessment tool contains 21 items of demographic data and 31 items in the eight subscales of "language and communication", "activities of daily living", "sleep", "activity arrangements", "nutrition and diet", "behavioral and psychological symptoms of dementia", "care stress", and "obtaining resources". The overall content validity of the assessment tool was .99 and the Cronbach's alpha of each subscale ranged between .625 and .905. The concurrent validities of the "activities of daily living" subscale and the "behavioral and psychological symptoms of dementia" subscale were, respectively, correlated with the Barthel Index (r = -.889, p < .001) and the Neuropsychiatric Inventory Questionnaire (r = .750, p < .001). CONCLUSIONS / IMPLICATIONS FOR PRACTICE: The assessment tool was assessed as having satisfactory validity and reliability. Moreover, the tool was clear and concise, and was able to be completed quickly by the caregivers. Transdisciplinary professionals involved in dementia care may use this assessment tool in outpatient departments, centers for integrated dementia care, and discharge preparation services to acquire information related to family care needs. The results of the assessment tool may be used as a reference in developing appropriate transdisciplinary care plans to improve the quality of care and quality of life of families of patients with dementia.


Assuntos
Cuidadores/psicologia , Demência/terapia , Determinação de Necessidades de Cuidados de Saúde , Inquéritos e Questionários , Idoso , Humanos , Psicometria , Reprodutibilidade dos Testes , Taiwan
16.
Pflege ; 33(4): 189-197, 2020 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-32811323

RESUMO

The life situation of people with dementia and family carers during the coronavirus pandemic - A qualitative study Abstract. Background: The measures initiated as a result of the coronavirus pandemic have far-reaching consequences for the everyday life of people with dementia and their family carers. Both are usually among those who are the most vulnerable and thus are subject to rigorous restrictions. Their everyday life is made more difficult because care and respite services are currently suspended. In addition, people with dementia have difficulty understanding and implementing the restrictions and hygiene rules. AIMS: This study aims to describe the current life situation of family carers and people with dementia. METHODS: For this purpose, 21 telephone interviews with both family carers and people with dementia have been conducted twice during the spring of 2020 and were subsequently evaluated by a content analysis. RESULTS: The interviewees experienced the situation differently. Especially the social isolation, the higher amount of care, the uncertainty of the situation and the increase in psychological symptoms are described as being stressful. With regard to coping with the situation, discussions are taking place about the support from the social environment, alternative ways of communication, experiences with comparable crises, the stability of formal care and the handling of information. CONCLUSIONS: Family carers and people with dementia feel stressed due to the coronavirus pandemic, but many of them have coping strategies for this special situation. Informal support is a particularly important support mechanism.


Assuntos
Cuidadores/psicologia , Infecções por Coronavirus/psicologia , Demência/terapia , Pandemias , Pneumonia Viral/psicologia , Adaptação Psicológica , Infecções por Coronavirus/epidemiologia , Humanos , Pneumonia Viral/epidemiologia , Pesquisa Qualitativa , Estresse Psicológico/psicologia
17.
Afr J AIDS Res ; 19(2): 123-134, 2020 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-32780678

RESUMO

The HIV pandemic has immense effects on the Eswatini population. The burden of caregiving rests on women, typically grandmothers who are elderly and dealing with chronic diseases themselves. The purpose of this study was to explore and describe the experiences of grandmothers in Eswatini caring for female adolescents living with HIV. The study draws on phenomenological fieldwork of six case studies of grandmother-granddaughter pairs who were purposively sampled. Data were collected through in-depth individual interviews that commenced with broad questions: "How is it for you to care for a female adolescent living with HIV?" for the grandmothers, and "How is it for you to live with HIV?" for female adolescents. Data were transcribed verbatim and analysed thematically following the elements of the caregiver stress theory. Drawing on the caregiver stress model, grandmothers and female adolescents experienced input stimuli of financial difficulties related to daily provisions for food and transport fare. Control processes experienced by grandmothers and female adolescents related to feelings of loss, grief, fear, hopelessness and isolation along with suicidal ideation for female adolescents. Regarding output stimuli, grandmothers and female adolescents developed psychological unrest related to difficulty accepting the HIV diagnosis and concerns about the future. Grandmothers experienced ill health due to the demands of the caregiving role. It is recommended that family, financial and psychological support be made available for grandmothers to lighten the duty of caregiving.


Assuntos
Cuidadores/psicologia , Avós/psicologia , Infecções por HIV/psicologia , Estresse Psicológico/psicologia , Adolescente , Idoso , Efeitos Psicossociais da Doença , Emoções , Essuatíni/epidemiologia , Feminino , Humanos , Relação entre Gerações , Pessoa de Meia-Idade , População Rural , Adulto Jovem
18.
Soins Gerontol ; 25(144): 29-31, 2020.
Artigo em Francês | MEDLINE | ID: mdl-32792239

RESUMO

Caregivers are responsible for respecting the privacy of the elderly, who are more vulnerable. This requires an individual and collective professional reflection on the meaning of the practices. It is also about respecting the free choice of lifestyle by taking into account the needs of family caregivers.


Assuntos
Cuidadores/psicologia , Privacidade , Respeito , Idoso , Humanos
19.
Soins Gerontol ; 25(144): 38-42, 2020.
Artigo em Francês | MEDLINE | ID: mdl-32792241

RESUMO

Heart failure is a serious and common disease in the elderly. It causes repeated hospitalizations with a progressive overall decline. It is often difficult at an advanced stage of the disease to "choose" between quality and quantity of life for both patients and their families and caregivers. A reflection conducted at the Centre for Clinical Ethics of the Assistance publique-Hôpitaux de Paris can help to make progress on these difficult choices.


Assuntos
Cuidadores/psicologia , Insuficiência Cardíaca/terapia , Idoso , Comportamento de Escolha , Humanos , Qualidade de Vida
20.
Med Care ; 58(9): 842-849, 2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-32826749

RESUMO

BACKGROUND: The CAregiver Perceptions About CommunIcaTion with Clinical Team members (CAPACITY) instrument measures how care partners perceive themselves to be supported by the patient's health care team and their experiences communicating with the team. OBJECTIVES: The objective of this study was to assess the measurement properties (ie, structural validity of the construct and internal consistency) of the CAPACITY instrument in care partners of patients with cognitive impairment, and to examine whether care partner health literacy and patient cognitive impairment are associated with a higher or lower CAPACITY score. RESEARCH DESIGN: This was a retrospective cohort study. SUBJECTS: A total of 1746 dyads of community-dwelling care partners and older adults in the United States with cognitive impairment who obtained an amyloid positron emission tomography scan. MEASURES: The CAPACITY instrument comprises 12 items that can be combined as a total score or examined as subdomain scores about communication with the team and care partner capacity-assessment by the team. The 2 covariates of primary interest in the regression model are health literacy and level of cognitive impairment of the patient (Modified Telephone Interview Cognitive Status). RESULTS: Confirmatory factor analysis showed the CAPACITY items fit the expected 2-factor structure (communication and capacity). Higher cognitive functioning of patients and higher health literacy among care partners was associated with lower communication domain scores, lower capacity domain scores, and lower overall CAPACITY scores. CONCLUSIONS: The strong psychometric validity of the CAPACITY measure indicates it could have utility in other family caregivers or care partner studies assessing the quality of interactions with clinical teams. Knowing that CAPACITY differs by care partner health literacy and patient impairment level may help health care teams employ tailored strategies to achieve high-quality care partner interactions.


Assuntos
Cuidadores/psicologia , Disfunção Cognitiva/epidemiologia , Comunicação , Pesquisas sobre Serviços de Saúde/normas , Letramento em Saúde/estatística & dados numéricos , Equipe de Assistência ao Paciente/organização & administração , Fatores Etários , Idoso , Idoso de 80 Anos ou mais , Análise Fatorial , Feminino , Nível de Saúde , Humanos , Masculino , Psicometria , Reprodutibilidade dos Testes , Estudos Retrospectivos , Índice de Gravidade de Doença , Fatores Sexuais , Fatores Socioeconômicos
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