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1.
Bol Med Hosp Infant Mex ; 78(2): 102-109, 2021 03 03.
Artigo em Inglês | MEDLINE | ID: mdl-33651786

RESUMO

This paper describes the experience in a public pediatric hospital when implementing the Mexican Health Ministry's recommendations on the inclusion and importance of a chosen caregiver during the hospitalization of a coronavirus disease 2019 (COVID-19) pediatric patient. The implementation includes the adjustments, observations, and limitations made in real practice and process. In conclusion, the value and benefits of the accompaniment of hospitalized children with COVID-19 by a primary or chosen caregiver are evidenced and supported by family-centered care. Furthermore, the recommendations mentioned result in comprehensive bio-psycho-social care for the benefit of pediatric patients.


Assuntos
/terapia , Cuidadores/organização & administração , Hospitais Pediátricos/organização & administração , Guias de Prática Clínica como Assunto , Criança , Hospitalização , Humanos , México , Assistência Centrada no Paciente/métodos
2.
Gerokomos (Madr., Ed. impr.) ; 31(3): 130-135, sept. 2020. tab
Artigo em Espanhol | IBECS | ID: ibc-197346

RESUMO

OBJETIVOS: Identificar las características de las personas cuidadoras familiares de mayores dependientes en un hospital de media-larga estancia, conocer la intensidad del cuidado, describir la labor cuidadora que realizan dichas personas en el hospital e identificar su nivel de sobrecarga y ansiedad. MÉTODO: Estudio descriptivo transversal en el Hospital Universitario Dr. Sagaz de Jaén (Andalucía, España). Muestra no probabilística de 270 personas cuidadoras familiares de mayores dependientes. Mediciones principales: necesidades básicas atendidas por las personas cuidadoras familiares durante la estancia en el hospital (según índice de Barthel), sobrecarga subjetiva (índice Esfuerzo del cuidador) y ansiedad (escala de Hamilton). Análisis principales: análisis descriptivo mediante porcentajes, medias, desviaciones típicas e intervalos de confianza al 95%. RESULTADOS: la mayoría de las personas cuidadoras estudiadas eran mujeres (87%), hija o hijo de la persona cuidada (54%), que compartía residencia con esta (68%) y a la que cuidaba en el domicilio antes de ingresar en el hospital (73%). En el hospital atendieron una media de 4,87 actividades básicas de la vida diaria. Las necesidades básicas más atendidas fueron: alimentación (83%), micción (83%), aseo personal (73%), empleo de ducha o baño (69%). El 46,3% de las personas cuidadoras presentó sobrecarga subjetiva y el 60,7%, ansiedad. CONCLUSIONES: La persona cuidadora hospitalaria es mujer, ama de casa, hija de la persona cuidada y comparte domicilio con esta. La intensidad del cuidado es alta. Las necesidades de alimentación, ducha o baño y aseo personal son las más prevalentes. Dichas cuidadoras presentan altos niveles de sobrecarga y ansiedad


OBJECTIVES: To identify the characteristics of family caregivers of elderly dependents in a hospital of medium-long stay, know the intensity of care, describe the care work performed by these caregivers and identify their level of subjective burden and anxiety. METHOD: Cross-sectional study in the Hospital Universitario Dr. Sagaz (Jaén, Andalusia, Spain). Non-probabilistic sample of 270 family caregivers of dependent elderly were recruited. Main measures: basic needs attended by family caregivers in the hospital (according to the Barthel Index), subjective burden (Caregiver Strain Index) and anxiety (Hamilton Anxiety Scale). Main analyses: descriptive analysis using percentages, means, standard deviations and 95% confidence intervals. RESULTS: the majority of the caregivers studied were women (87%), daughter or son of the care recipient (54%) who shared a residence with him or her (68%) and already care for her or him at home before entering the hospital (73%). In the hospital, caregivers attended an average of 4.87 basic activities of daily life. The most frequently attended basic needs were: nutrition (83%), micturition (83%), personal hygiene (73%) and shower or bath use (69%). CONCLUSIONS: The hospital caregiver is a woman, housekeeper, daughter of the care recipient and shares home with him/her. The intensity of care is high. The needs of nutrition shower or bath and personal hygiene are the most prevalent. These caregivers have high levels of burden and anxiety


Assuntos
Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Necessidades e Demandas de Serviços de Saúde , Cuidadores/organização & administração , Idoso Fragilizado , Atividades Cotidianas/psicologia , Cuidadores/estatística & dados numéricos , Cuidadores/psicologia , Ansiedade/psicologia , Esgotamento Profissional/psicologia , Estudos Transversais , Epidemiologia Descritiva , Intervalos de Confiança
3.
J Aging Soc Policy ; 32(4-5): 416-424, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32489144

RESUMO

Families and intergenerational relationships are important sources of risk for COVID-19 infection, especially for older adults who are at high risk of complications from the disease. If one family member is exposed to the virus they could serve as a source of transmission or, if they fall ill, the resources they provide to others could be severed. These risks may be especially heightened for family members who work outside the home and provide care, or for those family members who care for multiple generations. Policies have the potential to help families bear the burden of these decisions. This essay argues that policies that address health, employment, and other social issues have implications for families, and that policies aimed at families and caregivers can affect the health, employment, and the general well-being of the nation.


Assuntos
Cuidadores/organização & administração , Infecções por Coronavirus/epidemiologia , Família , Controle de Infecções/organização & administração , Pneumonia Viral/epidemiologia , Políticas , Idoso , Betacoronavirus , Cuidadores/normas , Emprego/organização & administração , Humanos , Controle de Infecções/normas , Relação entre Gerações , Pandemias , Estados Unidos/epidemiologia
5.
J Clin Nurs ; 29(15-16): 2999-3011, 2020 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-32350946

RESUMO

AIMS AND OBJECTIVES: To explore the day-to-day experiences of family caregivers who are caring for children with Osteogenesis Imperfecta (OI). BACKGROUND: Osteogenesis Imperfecta is a rare genetic condition known to cause bone fragility. Family caregivers of children with OI play an important role in helping these children live well at home. DESIGN: A qualitative descriptive design was used. METHODS: A qualitative descriptive study was conducted in accordance with the COREQ guidelines. Adult family caregivers (n = 18) of children with OI were recruited from a university-affiliated, paediatric orthopaedic hospital in Montreal, Canada. Individual interviews were conducted, transcribed verbatim and inductively thematically analysed. RESULTS: Osteogenesis Imperfecta family caregiving entailed: (a) managing regular day-to-day caregiving activities, including morning routines, evening routines and the facilitation of their child's mobilisation; (b) coping with periods that made the caregiving routine more challenging, such as fractures, surgeries and pain; and (c) devising long-term strategies to support day-to-day care, such as managing the environment, accessing medical and school resources, and coordinating care and respite. CONCLUSIONS: The day-to-day routine of caring for a child with OI may be disrupted by challenging periods and improved by long-term strategies developed to ease day-to-day care. These strategies suggest future directions for clinicians and policymakers to improve health services and caregiver well-being. RELEVANCE TO CLINICAL PRACTICE: Clinical, policy and research endeavours need to incorporate new interventions to support the needs of family caregivers. These recommendations may be relevant to other clinicians and policymakers working with families living with rare and chronic physical conditions.


Assuntos
Cuidadores/psicologia , Osteogênese Imperfeita/enfermagem , Adaptação Psicológica , Adulto , Cuidadores/organização & administração , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Determinação de Necessidades de Cuidados de Saúde , Pesquisa Qualitativa
6.
Enferm. glob ; 19(58): 560-575, abr. 2020. tab, graf
Artigo em Espanhol | IBECS | ID: ibc-195566

RESUMO

INTRODUCCIÓN: Desde la incorporación de la mujer al mundo laboral, junto con el envejecimiento progresivo de la población y el aumento de las enfermedades crónicas, se produce una alteración en el rol del cuidador, debido a la carga física, laboral y familiar que soporta, generándose conflictos emocionales y con el resto de miembros de la familia. La ayuda mutua puede ser una alternativa eficaz para promover el bienestar de los cuidadores, así como el de sus familias y dependientes. OBJETIVO: Conocer las características de los grupos de ayuda mutua (GAM) para cuidadores familiares y su influencia sobre los cuidadores, la persona dependiente y la salud familiar. METODOLOGÍA: Revisión sistemática. La estrategia de búsqueda incluyó las bases de datos Pubmed, Scopus, Psycinfo, Eric, Cochrane plus y CSIC. Se buscaron artículos escritos en español, catalán, inglés, portugués o francés, publicados en los últimos 10 años. RESULTADOS: Se seleccionaron 12 artículos relacionados con el tema de estudio. Todos los estudios muestran que la participación en estos grupos puede mejorar el bienestar físico-psicológico, el estado de salud de los cuidadores y, al mismo tiempo, reforzar su sentimiento de apoyo social, aunque faltan estudios en nuestro medio, con un tamaño muestral superior y de mayor calidad. CONCLUSIONES: Los cuidadores se benefician de participar en grupos de ayuda mutua. Por lo tanto, deben convertirse en un componente de rutina del cuidador familiar


INTRODUCTION: Since the incorporation of women into the world of work, together with the progressive ageing of the population and the increase of chronic diseases, there is an alteration in the role of the caregiver, due to the physical, work and family burden it bears, emotional conflicts and with other family members. Mutual aid can be an effective alternative to promoting the well-being of caregivers, as well as their families and dependents. OBJECTIVE: To know the characteristics of self-help groups for family caregivers and their influence on caregivers, the dependent and family health. METHODOLOGY: Systematic review. The search strategy included the Pubmed, Scopus, Psycinfo, Eric, Cochrane plus and CSIC databases; selecting scientific articles in either Spanish, Catalan, English, Portuguese or French, for the last 10 years. RESULTS: 12 articles related to the study topic were selected. All studies show that participation in these groups can improve the physical-psychological well-being, the health of caregivers and, at the same time, reinforce their sense of social support, although there is a lack of studies in our environment, with a size higher quality sample. CONCLUSIONS: Caregivers benefit from participating in self-help groups. Therefore, they should become a routine component of the family caregiver


Assuntos
Humanos , Grupos de Autoajuda/organização & administração , Cuidadores/organização & administração , Fragilidade/enfermagem , Pacientes Domiciliares/estatística & dados numéricos , Pessoas com Deficiência/estatística & dados numéricos , Comportamento de Ajuda , Cuidadores/psicologia , Educação em Saúde/organização & administração , Carga de Trabalho
7.
Thorax ; 75(4): 298-305, 2020 04.
Artigo em Inglês | MEDLINE | ID: mdl-32094154

RESUMO

BACKGROUND: Hospitalisation with severe lower respiratory tract infection (LRTI) in early childhood is associated with ongoing respiratory symptoms and possible later development of bronchiectasis. We aimed to reduce this intermediate respiratory morbidity with a community intervention programme at time of discharge. METHODS: This randomised, controlled, single-blind trial enrolled children aged <2 years hospitalised for severe LRTI to 'intervention' or 'control'. Intervention was three monthly community clinics treating wet cough with prolonged antibiotics referring non-responders. All other health issues were addressed, and health resilience behaviours were encouraged, with referrals for housing or smoking concerns. Controls followed the usual pathway of parent-initiated healthcare access. After 24 months, all children were assessed by a paediatrician blinded to randomisation for primary outcomes of wet cough, abnormal examination (crackles or clubbing) or chest X-ray Brasfield score ≤22. FINDINGS: 400 children (203 intervention, 197 control) were enrolled in 2011-2012; mean age 6.9 months, 230 boys, 87% Maori/Pasifika ethnicity and 83% from the most deprived quintile. Final assessment of 321/400 (80.3%) showed no differences in presence of wet cough (33.9% intervention, 36.5% controls, relative risk (RR) 0.93, 95% CI 0.69 to 1.25), abnormal examination (21.7% intervention, 23.9% controls, RR 0.92, 95% CI 0.61 to 1.38) or Brasfield score ≤22 (32.4% intervention, 37.9% control, RR 0.85, 95% CI 0.63 to 1.17). Twelve (all intervention) were diagnosed with bronchiectasis within this timeframe. INTERPRETATION: We have identified children at high risk of ongoing respiratory disease following hospital admission with severe LRTI in whom this intervention programme did not change outcomes over 2 years. TRIAL REGISTRATION NUMBER: ACTRN12610001095055.


Assuntos
Bronquiectasia/prevenção & controle , Bronquiolite/tratamento farmacológico , Cuidadores/organização & administração , Serviços de Saúde Comunitária/organização & administração , Hospitalização/estatística & dados numéricos , Pneumonia Bacteriana/tratamento farmacológico , Antibacterianos/uso terapêutico , Austrália , Bronquiectasia/epidemiologia , Bronquiolite/diagnóstico , Feminino , Seguimentos , Humanos , Lactente , Masculino , Avaliação de Resultados em Cuidados de Saúde , Pais , Pneumonia Bacteriana/diagnóstico , Prognóstico , Estudos Prospectivos , Medição de Risco , Índice de Gravidade de Doença , Método Simples-Cego , Fatores de Tempo
8.
Rev. neurol. (Ed. impr.) ; 70(3): 75-83, 1 feb., 2020. tab, graf
Artigo em Espanhol | IBECS | ID: ibc-187252

RESUMO

Introducción: El síndrome de Dravet (SD) es una encefalopatía epiléptica, iniciada en la infancia, con un gran impacto en la vida de los pacientes y los familiares. Actualmente se necesitan mejoras en su diagnóstico y tratamiento: existen dos fármacos aprobados para el tratamiento del SD en Europa, aunque hay nuevos tratamientos en desarrollo o en vías de comercialización próximamente. Objetivos: Comprender la situación del SD en España e identificar las oportunidades de mejora. Sujetos y métodos: Análisis de los datos de una macroencuesta europea en la que los cuidadores de pacientes con SD manifestaron su experiencia con la enfermedad. Resultados: Datos de 57 familias con hijos con SD (edad media: 9 años). El tiempo hasta el diagnóstico, generalmente tras otro erróneo (80%), se incrementa en los pacientes de mayor edad (el 80% de los adultos: retraso diagnóstico > 4 años). La demora induce un mayor uso de fármacos antiepilépticos contraindicados. Las crisis (87% de los casos; las más frecuentes, tonicoclónicas: 90%) y las hospitalizaciones (60% de los casos) continúan hasta la edad adulta. La gravedad de la enfermedad y el número de hospitalizaciones se correlacionan con el impacto en los cuidadores y la familia. La eficacia de los tratamientos y el futuro de los pacientes son las mayores preocupaciones. Conclusiones: Para mejorar el manejo y la calidad de vida de los pacientes con SD y los familiares, es necesario un diagnóstico temprano y la incorporación de nuevos tratamientos que ayuden al control de las crisis epilépticas y de las comorbilidades de la enfermedad


Introduction: Dravet's syndrome (DS) is an epileptic encephalopathy that starts in infancy and has an important impact on the lives of patients and their relatives. There is currently a need for improvement in diagnosis and treatment: two drugs have been approved for the treatment of DS in Europe, although new treatments are under development or are scheduled for commercialisation soon. AIMS. To understand the situation of DS in Spain and to identify opportunities for improvement. Subjects and methods: The study will involve an analysis of data from a European macro-survey in which carers of patients with DS expressed their experience with the disease. Results: Data from 57 families with children with DS (mean age: 9 years). The time to diagnosis, usually after another misdiagnosis (80%), increases in older patients (80% of adults: diagnostic delay > 4 years). The delay induces an increased use of contraindicated antiepileptic drugs. Seizures (87% of cases; the most frequent, tonic-clonic: 90%) and hospitalisations (60% of cases) continue into adulthood. The severity of the illness and the number of hospitalisations correlate with impact on caregivers and family. The effectiveness of treatments and the future of patients are the greatest concerns. Conclusions: In order to improve the management and quality of life of patients with DS and their families, it is necessary to have an early diagnosis and to incorporate new treatments that help to control the epileptic seizures and the comorbidities of the disease


Assuntos
Humanos , Masculino , Feminino , Pré-Escolar , Criança , Adolescente , Epilepsias Mioclônicas/epidemiologia , Qualidade de Vida , Saúde da Família , Epilepsias Mioclônicas/fisiopatologia , Espanha/epidemiologia , Análise de Dados , Cuidadores/organização & administração , Epilepsia Tônico-Clônica/epidemiologia , Comorbidade , Inquéritos e Questionários , Estudos Transversais
9.
J Clin Nurs ; 29(11-12): 2023-2030, 2020 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-31945246

RESUMO

AIMS AND OBJECTIVES: To describe the proportion of toothbrushing task steps, long-term care residents had an opportunity to complete; the duration and quality of toothbrushing by both residents and caregivers; and the feedback caregivers provided. BACKGROUND: Poor oral health is widespread among older adults in long-term care homes; however, little is known about their actual oral health practices. DESIGN: Secondary analysis of video recordings. METHODS: A total of 58 video-recorded sessions were analysed from two long-term care homes in Canada. Eligible residents had at least one natural tooth, required oral care assistance, had Alzheimer's disease and understood English. Eligible caregivers spoke English and had worked for at least 1 year with people with dementia. Toothbrushing success was identified by the resident's participation in, and completion of, nine toothbrushing steps. Total time spent brushing teeth was calculated by summing the duration of time spent brushing teeth. Quality was described by time spent brushing the facial versus the lingual or occlusal surfaces. Caregiver verbal feedback was pulled from transcripts and analysed using content analysis. STROBE guidelines were used in reporting this study. RESULTS: The two step residents most frequently completed or attempted were brushing their teeth (77% complete, 7% attempt) and rinsing their mouth (86% complete, 2% attempt). The average time spent brushing teeth was 60.33 s (SD = 35.15). In 66% of observed videos, toothbrushing occurred only on the facial tooth surfaces, with no time spent brushing the lingual or occlusal surfaces. CONCLUSION: Caregivers are supporting residents to independently complete toothbrushing; however, the duration and quality of toothbrushing are not sufficient to ensure optimal oral health. RELEVANCE TO CLINICAL PRACTICE: Clear, detailed guidelines are required to ensure adequate oral care for long-term care residents. Staff need to be aware that all surfaces should be brushed to ensure proper oral health.


Assuntos
Doença de Alzheimer/complicações , Saúde Bucal/normas , Escovação Dentária/métodos , Idoso , Cuidadores/organização & administração , Feminino , Humanos , Assistência de Longa Duração , Masculino , Gravação em Vídeo
10.
London; National Institute for Health and Care Excellence; Jan. 22, 2020. 61 p.
Monografia em Inglês | BIGG - guias GRADE | ID: biblio-1179123

RESUMO

This guideline covers support for adults (aged 18 and over) who provide unpaid care for anyone aged 16 or over with health or social care needs. It aims to improve the lives of carers by helping health and social care practitioners identify people who are caring for someone and give them the right information and support. It covers carers' assessments, practical, emotional and social support and training, and support for carers providing end of life care. This guideline covers general principles that apply to all adult carers. Recommendations about supporting carers of people with specific health needs can be found in NICE guidance on those conditions. This guideline should be read together with the Care and support statutory guidance under the Care Act 2014 and the Children and Families Act 2014.


Assuntos
Humanos , Adulto , Atenção Primária à Saúde/organização & administração , Cuidadores/educação , Cuidadores/organização & administração , Cuidadores/psicologia
11.
BMC Res Notes ; 12(1): 810, 2019 Dec 17.
Artigo em Inglês | MEDLINE | ID: mdl-31847874

RESUMO

OBJECTIVE: Carers play an important role within the UK mental health system. Those carers who support persons with psychosis can experience a reduction in their own physical and mental health. As part of the Caring for Caregivers (C4C) trial, we piloted a writing intervention (Positive Written Disclosure) that has been shown to improve wellbeing in other populations. Although we reached our recruitment target, we encountered several barriers that made recruitment slower than anticipated. This paper synthesises the process data collected during the C4C trial that relates to the barriers to recruiting and retaining psychosis carers. RESULTS: We encountered four main carer-specific barriers to the recruitment and retention of participants in our study. These were: (1) poor relationship with mental health clinicians, (2) conflicting with the care recipient's (CR) needs, (3) lack of spare time, and (4) lack of services for mental health carers. The interventions to assist carers need to be informed by robust evidence and this requires trials that reach their recruitment targets. By sharing our practical experiences other researchers and clinicians can modify their practices to minimise recruitment difficulties and delay. Trial registration ISRCTN79116352. Retrospectively registered (before the final participant was recruited) on 23rd January 2017.


Assuntos
Cuidadores/psicologia , Transtornos Psicóticos/psicologia , Cuidadores/ética , Cuidadores/organização & administração , Empatia/ética , Humanos , Pessoal de Laboratório Médico/psicologia , Saúde Mental , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Seleção de Pacientes , Seleção de Pessoal , Transtornos Psicóticos/enfermagem , Qualidade de Vida
12.
Curr Opin Support Palliat Care ; 13(4): 369-379, 2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-31644451

RESUMO

PURPOSE OF REVIEW: The disease-related burden of patients with hematological malignancies is comparable with patients suffering from solid tumors. Palliative care offers relief from suffering independent of type of disease and prognosis. The prevalence of hematological malignancies is expected to increase in the next 20 years because of better therapeutic options with longer survival and because of the aging population. However, patients with hematological malignancies are underrepresented in palliative care as these diseases are associated with special care needs and prognostic uncertainty, which differ from the unambiguity of terminally ill patients with solid tumors. This review describes the recent studies and guidelines addressing the problems in palliative care for patients with hematological malignancies. RECENT FINDINGS: Recent research covers prognostic uncertainty, challenges in terms of the acute death setting, and blood transfusions in the terminally ill as well as interdisciplinary collaboration. In addition to qualitative approaches exploring reasons for these challenges, criteria that indicate the approaching end of life in hematological malignancies were systematically developed and tested. Further, the effectiveness of palliative care addressing the hematopoietic stem cell transplantation setting was further analyzed. SUMMARY: The patients' perspective needs to be involved in future research to examine whether the connotation of 'palliative care' is a barrier for patients, families or healthcare professionals. Communication culture and skills have already been identified as goals for medical training. Further studies should identify the effective elements of palliative care specific for hematological malignancies and develop feasible support models, including informal caregivers.


Assuntos
Neoplasias Hematológicas/terapia , Cuidados Paliativos/organização & administração , Assistência Terminal/organização & administração , Planejamento Antecipado de Cuidados , Cuidadores/organização & administração , Cuidadores/psicologia , Comorbidade , Nível de Saúde , Transplante de Células-Tronco Hematopoéticas/métodos , Transplante de Células-Tronco Hematopoéticas/psicologia , Humanos , Comunicação Interdisciplinar , Cuidados Paliativos/psicologia , Prognóstico , Pesquisa Qualitativa , Assistência Terminal/psicologia , Incerteza
13.
Australas J Ageing ; 38 Suppl 2: 53-58, 2019 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-31496067

RESUMO

OBJECTIVE: To describe the co-design process in a project that "evaluated how the key worker role can best support people living with dementia in the community setting." METHODS: People with dementia, care-partners, aged-care service experts, policymakers and academics utilised a co-design process to undertake a systematic literature review and a qualitative evaluation study. RESULTS: The development of a successful co-design process that includes people living with dementia and their care-partners ("consumers") at all stages of the research process and addresses their individual needs. CONCLUSIONS: The co-design approach utilised in this project provided support, for consumers living in the community to be fully involved in the research design, conduct and plans for dissemination and implementation of the findings. Consequently, the research outcomes are based on solid evidence and consumer need. Additionally, a successful model for supporting consumers to facilitate their involvement in all aspects of the research process, was developed.


Assuntos
Pessoal Administrativo/organização & administração , Pesquisa Biomédica/organização & administração , Cuidadores/organização & administração , Demência/terapia , Geriatria/organização & administração , Serviços de Saúde para Idosos/organização & administração , Equipe de Assistência ao Paciente/organização & administração , Parcerias Público-Privadas/organização & administração , Adaptação Psicológica , Pessoal Administrativo/psicologia , Cuidadores/psicologia , Efeitos Psicossociais da Doença , Demência/diagnóstico , Demência/psicologia , Humanos , Vida Independente , Comunicação Interdisciplinar , Pesquisa Qualitativa , Apoio Social , Participação dos Interessados
14.
Australas J Ageing ; 38 Suppl 2: 59-67, 2019 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-31496066

RESUMO

OBJECTIVE: To examine the overlap between priorities expressed by representatives from national and local campaigning organisations and the views of key voices in relation to dementia. METHODS: Semi-structured, in-depth telephone interviews were conducted with 19 representatives from campaigning organisations, including nine countries and six local community initiatives in Australia. Responses were categorised into nine priorities. Views were compared to the voices of people with dementia (n = 19), carers (n = 28), and health-care (n = 21), social work (n = 23) and service professionals (n = 20). RESULTS: Local groups prioritised user-led decision-making and community normalising agendas. National groups were influenced by service frameworks and increasing public awareness. Professional and carer groups focused on increasing understanding and communication skills while people with dementia valued being a normal part of society. CONCLUSION: Future campaigning should use both national and local approaches to changing social relations, through interpersonal connections, advocacy and social mobilisation, to promote a normalising approach to attitude change.


Assuntos
Cuidadores/organização & administração , Demência/terapia , Geriatria/organização & administração , Pessoal de Saúde/organização & administração , Promoção da Saúde/organização & administração , Serviços de Saúde para Idosos/organização & administração , Pacientes , Saúde Pública , Assistentes Sociais , Pessoal Administrativo , Adulto , Idoso , Idoso de 80 Anos ou mais , Atitude do Pessoal de Saúde , Cuidadores/legislação & jurisprudência , Cuidadores/psicologia , Demência/diagnóstico , Demência/psicologia , Feminino , Geriatria/legislação & jurisprudência , Conhecimentos, Atitudes e Prática em Saúde , Pessoal de Saúde/legislação & jurisprudência , Pessoal de Saúde/psicologia , Promoção da Saúde/legislação & jurisprudência , Serviços de Saúde para Idosos/legislação & jurisprudência , Humanos , Masculino , Pessoa de Meia-Idade , Equipe de Assistência ao Paciente/organização & administração , Pacientes/legislação & jurisprudência , Pacientes/psicologia , Saúde Pública/legislação & jurisprudência , Parcerias Público-Privadas/organização & administração , Assistentes Sociais/legislação & jurisprudência , Assistentes Sociais/psicologia , Participação dos Interessados
16.
Soc Sci Med ; 237: 112449, 2019 09.
Artigo em Inglês | MEDLINE | ID: mdl-31394398

RESUMO

In recent decades, longer life expectancy, the consequent greater number of patients with often concurrent diseases, and the need of healthcare institutions to reduce the costs of services, have engendered changes in all European healthcare systems. On one side, healthcare systems increasingly rely on the self-management skills of patients, who undertake a growing amount of 'sickness work' from which they are relieved only in the case of severe illness. On the other, the inability of public healthcare systems to satisfy the increased demand for care has led to the growth of private healthcare organizations as well as cooperatives of health professionals who offer their services privately. The care of citizens, therefore, is increasingly distributed across networks of actors with very different objectives, logics of action and professional backgrounds (public and private healthcare organizations, community medical services, voluntary organizations). Despite the attention devoted by social studies of medicine to the work done by citizens in supporting the work of clinicians and nurses, the work performed in connection to the management of care networks have been only marginally investigated. Drawing on a qualitative research carried out in the Province of Trento (Italy) and focused on the different ways in which elderly people with chronic conditions manage their conditions outside the healthcare and welfare institutions, in this paper we are interested in deepening the understanding of the invisible work citizens perform in connection to the management of care services and professionals. That is, the work needed in order to activate, mend and coordinate complex networks of care.


Assuntos
Redes Comunitárias/organização & administração , Assistência à Saúde/organização & administração , Seguridade Social , Idoso , Idoso de 80 Anos ou mais , Cuidadores/organização & administração , Feminino , Humanos , Entrevistas como Assunto , Itália , Masculino , Autocuidado
17.
Aust J Prim Health ; 25(4): 359-365, 2019 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-31466559

RESUMO

Effective self-management is the cornerstone of chronic disease self-management. However, self-management of chronic disease in patients with comorbid dementia is particularly challenging. It is vital that clinicians, patients and carers work collaboratively to tailor self-management programs to each patient with dementia. This study aimed to identify barriers and facilitators of successful self-management in the context of cognitive impairment in order to optimise the capacity for self-management for persons with dementia (PWD). A qualitative study based on semistructured interviews was conducted in Victoria, Australia. Interviews were conducted with 12 people (employed in the ambulatory and dementia care sectors), representing six health services. Participants identified a healthcare system that is complex, not dementia friendly and not accommodating the needs of PWD who have comorbidities. Individual and systemic barriers contributed to ineffective self-management. Chronic disease support programs do not routinely undertake cognitive assessment or have guidelines for modified management approaches for those with cognitive impairment. Support needs to be long-term and requires a specialised skillset that recognises not only chronic disease management, but also the effect of cognition on self-management. Although formal guidelines are needed, care also needs to be tailored to individual cognitive abilities and deficits.


Assuntos
Cuidadores/organização & administração , Demência/terapia , Conhecimentos, Atitudes e Prática em Saúde , Pessoal de Saúde/psicologia , Assistência de Longa Duração/organização & administração , Comorbidade , Demência/complicações , Feminino , Necessidades e Demandas de Serviços de Saúde , Humanos , Masculino , Pesquisa Qualitativa , Vitória
18.
Presse Med ; 48(7-8 Pt 1): e209-e215, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31421945

RESUMO

AIM: Identified Palliative Care Beds (Lits Identifiés Soins Palliatifs - LISPs) is a French specificity. Primarily created to integrate palliative care culture into conventional hospital units, the relevance of this measure became a controversial issue. Nowadays, hospital teams continue to frequently encounter complex situations regarding medical care for palliative patients. To the best of our knowledge, there is only one study, a quantitative one, bridging the gap about that subject. It showed failure in practicing palliative care work around LISP. Our study is based on a qualitative method that complements the quantitative study. It aimed to describe difficulties that limit palliative care practices in managing adult patients in LISP. METHOD: This qualitative exploratory survey was conducted with a sample of health service professionals (n=20), from senior physicians to caregivers. Each semi-structured interview included open questions regarding their experiences, feelings and difficulties with palliative care practices on LISP. It also included closed questions concerning interviewee's demographics and career course. The data for this research were submitted to a two-stage analysis: first, a global review of each interview was performed to identify trends. Then, a detailed breakdown, question by question, was implemented. RESULTS: From a quantitative perspective, the interviews revealed 305 difficulties, indicating the gaps and barriers limiting the implementation of a palliative approach in these services. From a qualitative perspective, five topics raised our attention by their recurrence in discourses: (1) partial knowledge about palliative care definition and legislation mostly due to a lack of training; (2) need for time; (3) need for human resources; (4) need for communication; (5) hard time in transitioning from curative to palliative care. PERSPECTIVE: This survey gives the opportunity to understand health service professionals' difficulties in practicing palliative care in conventional medical services. It raises the central issue of the pricing reform on the health institutes activity. It also provides angles of inquiry to improve LISP effectiveness. This qualitative and descriptive study was designed to explore difficulties in practicing palliative care around LISP. Nevertheless, according to the size of the sample, results will need to be confirmed by a more extensive qualitative survey.


Assuntos
Continuidade da Assistência ao Paciente , Unidades Hospitalares/organização & administração , Cuidados Paliativos/organização & administração , Equipe de Assistência ao Paciente/organização & administração , Padrões de Prática Médica , Qualidade da Assistência à Saúde/organização & administração , Adulto , Atitude do Pessoal de Saúde , Cuidadores/organização & administração , Cuidadores/normas , Barreiras de Comunicação , Continuidade da Assistência ao Paciente/organização & administração , Continuidade da Assistência ao Paciente/normas , Assistência à Saúde/métodos , Assistência à Saúde/organização & administração , Assistência à Saúde/normas , Arquitetura de Instituições de Saúde/normas , França , Conhecimentos, Atitudes e Prática em Saúde , Número de Leitos em Hospital , Unidades Hospitalares/normas , Humanos , Entrevistas como Assunto , Satisfação no Emprego , Cuidados Paliativos/psicologia , Cuidados Paliativos/normas , Equipe de Assistência ao Paciente/normas , Padrões de Prática Médica/organização & administração , Padrões de Prática Médica/normas , Pesquisa Qualitativa , Qualidade da Assistência à Saúde/normas , Estudos Retrospectivos , Inquéritos e Questionários
19.
Surgery ; 166(5): 769-777, 2019 11.
Artigo em Inglês | MEDLINE | ID: mdl-31285045

RESUMO

BACKGROUND: Active involvement of relatives has the potential to improve postoperative patient outcomes by prevention of complications sensitive to basic care and unplanned readmissions. The aim of this study was to assess the feasibility of a program in which relatives participated in postoperative care. METHODS: A pragmatic feasibility trial conducted at the surgical ward of a University hospital in the Netherlands. Patients undergoing esophageal or pancreatic resection with a relative who was willing and able to participate formed the intervention group (n = 20). A control group (n = 20) received usual postoperative care. The program consisted of the following: (1) information; (2) shared goal setting; (3) task-oriented training; (4) participation in basic care, focusing on mobilization, breathing exercises, cognitive activities and oral hygiene; (5) presence of relatives during ward rounds; and (6) rooming-in. Feasibility criteria were adherence to basic care, caregiver burden, and satisfaction of patients, family, and healthcare professionals. RESULTS: All participants completed the program. Patients in the intervention group mobilized more (estimated difference for walking 170 meters per day, P = .037, and for sitting 109 minutes per day, P < .001), and showed more adherence to breathing exercises (estimated difference per day 1.4, P = .003), oral hygiene (estimated difference 1.52, P = .001), and cognitive activities (estimated difference 2.6, P < .001). Relatives'Care-Related Quality of Life instrument score did not deteriorate over time (P = .64); 96% of relatives would recommend the program and 92% felt better prepared for discharge. Patients in the intervention group were more satisfied with hospital admission. Healthcare professionals valued the program positively. CONCLUSION: This program is feasible and is positively appreciated by patients, family, and healthcare professionals. Patients following the program showed more adherence to basic care activities.


Assuntos
Cuidadores/organização & administração , Esofagectomia/reabilitação , Família , Pancreatectomia/reabilitação , Cuidados Pós-Operatórios/métodos , Idoso , Esofagectomia/efeitos adversos , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Países Baixos , Pancreatectomia/efeitos adversos , Cooperação do Paciente/estatística & dados numéricos , Satisfação do Paciente/estatística & dados numéricos , Projetos Piloto , Complicações Pós-Operatórias/etiologia , Complicações Pós-Operatórias/prevenção & controle , Avaliação de Programas e Projetos de Saúde , Qualidade de Vida
20.
BMJ Open ; 9(7): e028427, 2019 07 24.
Artigo em Inglês | MEDLINE | ID: mdl-31345971

RESUMO

INTRODUCTION: In Rwanda, diabetes mellitus prevalence is estimated between 3.1% and 4.3%. To address non-communicable diseases and the shortage of health workforce, the Rwandan Ministry of Health has introduced the home-based care practitioners (HBCPs) programme: laypeople provide longitudinal care to chronic patients after receiving a six-month training. Leveraging technological mobile solutions may also help improve health and healthcare. The D²Rwanda study aims at: (a) determining the efficacy of an integrated programme for the management of diabetes in Rwanda, which will provide monthly patient assessments by HBCPs, and an educational and self-management mHealth patient tool, and; (b) exploring qualitatively the ways the interventions will have been enacted, their challenges and effects, and changes in the patients' health behaviours and HBCPs' work satisfaction. METHODS AND ANALYSIS: This is a mixed-methods sequential explanatory study. First, there will be a one-year cluster randomised controlled trial including two interventions ((1) HBCPs' programme; (2) HBCPs' programme + mobile health application) and usual care (control). Currently, nine hospitals run the HBCPs' programme. Under each hospital, administrative areas implementing the HBCPs' programme will be randomised to receive intervention 1 or 2. Eligible patients from each area will receive the same intervention. Areas without the HBCPs' programme will be assigned to the control group. The primary outcome will be changes in glycated haemoglobin. Secondary outcomes include medication adherence, mortality, complications, health-related quality of life, diabetes-related distress and health literacy. Second, at the end of the trial, focus group discussions will be conducted with patients and HBCPs. Financial support was received from the Karen Elise Jensens Fond, and the Universities of Aarhus and Luxembourg. ETHICS AND DISSEMINATION: Ethics approval was obtained from the Rwanda National Ethics Committee and the Ethics Review Panel of the University of Luxembourg. Findings will be disseminated via peer-reviewed publications and conference presentations. TRIAL REGISTRATION NUMBER: NCT03376607; Pre-results.


Assuntos
Diabetes Mellitus Tipo 2/terapia , Serviços de Assistência Domiciliar/organização & administração , Atenção Primária à Saúde/organização & administração , Telemedicina/métodos , Cuidadores/educação , Cuidadores/organização & administração , Feminino , Humanos , Masculino , Avaliação de Programas e Projetos de Saúde , Pesquisa Qualitativa , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto , Ruanda
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