RESUMO
INTRODUCTION: Continuity of midwifery carer improves outcomes, but there is significant variation in how such schemes are implemented and evaluated cross-culturally. The Angus home birth scheme in Scotland incorporates continuity of carer throughout pregnancy, labor, birth, and the postnatal period. METHODS: Manual maternity case note review to evaluate the 80% continuity of carer and 3% planned home birth rate targets. RESULTS: Of 1466 women booking for maternity care, 69 joined the scheme. Forty-four had a planned home birth (3% overall), of whom seven were originally deemed ineligible. Of the 44, eight (18%) also achieved 80% continuity of carer with the primary midwife; by including a home birth team colleague, the continuity rate rose to 73%. Women whose care achieved home birth and continuity targets had lower deprivation scores. Eligibility issues, women's changing circumstances, and data recording lapses were complicating issues. CONCLUSIONS: Targets must be both feasible and meaningful and should be complemented by assessing a broad range of outcomes while viewing the scheme holistically. By expanding eligibility criteria, the home birth rate target was met; including input from a home birth team colleague in the calculation meant the continuity target was nearly met. With dedicated and competent staff, adequate resource and political support, and when considered in the round, the scheme's viability within local services was confirmed. Other generalizable learning points included the need to standardize definitions and data recording methods. Comparability across schemes helps grow the evidence base so that the links between processes and outcomes can be identified.
Assuntos
Cuidadores/organização & administração , Continuidade da Assistência ao Paciente/organização & administração , Parto Domiciliar/normas , Tocologia/organização & administração , Cuidado Pré-Natal/organização & administração , Adulto , Cuidadores/normas , Continuidade da Assistência ao Paciente/normas , Feminino , Humanos , Trabalho de Parto , Tocologia/normas , Satisfação do Paciente , Gravidez , Cuidado Pré-Natal/normas , Escócia , Inquéritos e Questionários , Adulto JovemRESUMO
BACKGROUND AND OBJECTIVES: Compared with hemodialysis, home peritoneal dialysis alleviates the burden of travel, facilitates independence, and is less costly. Physical, cognitive, or psychosocial factors may preclude peritoneal dialysis in otherwise eligible patients. Assisted peritoneal dialysis, where trained personnel assist with home peritoneal dialysis, may be an option, but the optimal model is unknown. The objective of this work is to characterize existing assisted peritoneal dialysis models and synthesize clinical outcomes. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: A systematic review of MEDLINE, Cochrane Central Register of Controlled Trails, Cochrane Database of Systematic Reviews, Embase, PsycINFO, and CINAHL was conducted (search dates: January 1995-September 2018). A focused gray literature search was also completed, limited to developed nations. Included studies focused on home-based assisted peritoneal dialysis; studies with the assist provided exclusively by unpaid family caregivers were excluded. All outcomes were narratively synthesized; quantitative outcomes were graphically depicted. RESULTS: We included 34 studies, totaling 46,597 patients, with assisted peritoneal dialysis programs identified in 20 jurisdictions. Two categories emerged for models of assisted peritoneal dialysis on the basis of type of assistance: health care and non-health care professional assistance. Reported outcomes were heterogeneous, ranging from patient-level outcomes of survival, to resource use and transfer to hemodialysis; however, the comparative effect of assisted peritoneal dialysis was unclear. In two qualitative studies examining the patient experience, the maintenance of independence was identified as an important theme. CONCLUSIONS: Reported outcomes and quality were heterogeneous, and relative efficacy of assisted peritoneal dialysis could not be determined from included studies. Although the patient voice was under-represented, suggestions to improve assisted peritoneal dialysis included using a person-centered model of care, ensuring continuity of nurses providing the peritoneal dialysis assist, and measures to support patient independence. Although attractive elements of assisted peritoneal dialysis are identified, further evidence is needed to connect assisted peritoneal dialysis outcomes with programmatic features and their associated funding models.
Assuntos
Prestação Integrada de Cuidados de Saúde/organização & administração , Serviços de Assistência Domiciliar/organização & administração , Nefropatias/terapia , Modelos Organizacionais , Diálise Peritoneal , Cuidadores/organização & administração , Continuidade da Assistência ao Paciente/organização & administração , Pessoal de Saúde/organização & administração , Humanos , Nefropatias/diagnóstico , Nefropatias/fisiopatologia , Satisfação do Paciente , Assistência Centrada no Paciente/organização & administração , Diálise Peritoneal/efeitos adversos , Qualidade de Vida , Resultado do TratamentoRESUMO
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 , RuandaRESUMO
PURPOSE OF REVIEW: A holistic palliative approach for heart failure care emphasizes supporting nonprofessional informal caregivers. Informal caregivers play a vital role caring for heart failure patients. However, caregiving negatively affects informal caregivers' well being, and in turn heart failure patients' health outcomes. This opinion article proposes that complex adaptive systems (CAS) theory applied to heart failure models of care can support the resiliency of the heart failure patient - informal caregiver dyad. RECENT FINDINGS: Heart failure care is enacted within a complex system composed of patients, their informal caregivers and a variety of health professionals. In a national study, we employed a CAS perspective to explore how all parts of the heart failure team function interdependently in emergent and adaptive ways. Salient in our data were the severe vulnerability of elderly heart failure patients and their long-term partners who suffered from a chronic illness. Novel approaches are needed that can quickly adapt and reorganize care when unpredictable disturbances occur in the couples' functional capacity. SUMMARY: The linear protocol-driven care models that shape heart failure guidelines, training and care delivery initiatives do not adequately capture heart failure patients' social environment. CAS is a powerful theoretical tool that can render visible the most vulnerable members of the heart failure team, and incite robust specialized holistic palliative heart failure care models.
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Cuidadores/organização & administração , Insuficiência Cardíaca/epidemiologia , Insuficiência Cardíaca/psicologia , Cuidados Paliativos/organização & administração , Apoio Social , Adaptação Psicológica , Idoso , Idoso de 80 Anos ou mais , Cuidadores/psicologia , Doença Crônica , Efeitos Psicossociais da Doença , Saúde Holística , Humanos , Cuidados Paliativos/psicologia , Resiliência Psicológica , Meio Social , Estresse Psicológico/epidemiologia , Estresse Psicológico/psicologiaRESUMO
Often family members provide care-giving, which allows older adults to remain in their homes. With declining health and increasing frailty, care-giving of elderly people becomes a task of family caregivers (FC) in conjunction with home care nurses. It has been shown in both acute care settings and long-term care facilities that family members prefer to be involved in decision-making and care planning for their next of kin. Therefore, an integrative review was conducted to explore the body of knowledge of FCs' involvement in home-care settings from the FCs' perspective. CINAHL, PubMed, and Cochrane databases was searched with the terms family caregiver, involvement, home care, and community dwelling. Studies written in German or English between 1996 and 2017 focusing on FCs' caring for home-dwelling older adults together with home care nurses were included and critically appraised. The extracted findings were analysed with concept analysis method. Twenty-six studies were included and five themes were identified. Four themes formed the basis of assistance towards family caregivers by nurses and included "relationship building with professionals," "negotiating with professional care," "being professionally supported," and "managing role expectations and knowledge sharing". The fifth theme, "working together" described the mutual care for the care recipient. Although the first four themes were consistent with a pre-existing conceptual model by Sims-Gould and Marin-Matthews (2010), the fifth required an expansion of the model with an additional contribution "collaborative practice". The findings illustrate that involvement in care is an interactional process, which provides the basis for collaborative practices with the home care nurses for family caregivers. Family members often want to be part of the healthcare team, and nurses need contextual factors that allow providing their full range of skills and knowledge to involve family caregivers accordingly.
Assuntos
Cuidadores/organização & administração , Família , Serviços de Assistência Domiciliar/organização & administração , Vida Independente , Idoso , Humanos , Relações Profissional-FamíliaRESUMO
Greater integration of health and social care services is considered vital to ensure sustainable long-term quality provision for the growing numbers of people living with dementia and their families. Integration of services is at the heart of government policy in England. We evaluated a new integrated service for post diagnostic dementia care, funded as a pilot and delivered through a partnership of statutory and voluntary sector health and social care organisations. The service used an adapted Admiral Nursing service model with a workforce of Admiral Nurses (ANs) and Dementia Advisers (DAs). A mixed method approach was used to assess implementation and outcomes. It involved collection of service activity data, carer reported experience survey data, focus group discussions and interviews with the service delivery team, and the management group. Qualitative data was analysed using a framework approach. About 37.8% of the eligible population registered with the service over the 14-month pilot period. The self-referral route accounted for the majority of referrals, and had enabled those not currently receiving specialist dementia care to engage with the service. Carer satisfaction surveys indicated high levels of satisfaction with the service. The caseload management system offered specific benefits. Individual caseloads ensured continuity of care while the integrated structure facilitated seamless transfer between or shared working across AN and DA caseloads. The skill mix facilitated development of the DA role increasing their potential contribution to dementia care. Challenges included managing large workloads and agreeing responsibilities across the skill mix of staff. This model of fully integrated service offers a novel approach to address the problems of fragmented provision by enabling joined-up working across health and social care.
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Cuidadores/organização & administração , Prestação Integrada de Cuidados de Saúde/métodos , Equipe de Assistência ao Paciente/organização & administração , Serviço Social/métodos , Administração de Caso/organização & administração , Demência , Inglaterra , Grupos Focais , Humanos , Avaliação de Programas e Projetos de SaúdeRESUMO
OBJECTIVE: To undertake an integrative review of the literature on relationships between community aged care recipients, family carers and care providers under consumer-directed care (CDC). METHODS: Seven databases were systematically searched. Peer-reviewed and grey literature on CDC between 1998 and 2014 were assessed using an integrative literature review (ILR) framework. Search terms included CDC, self-directed care, direct payments, community aged care, community dwelling and older adults. Full-text copies were assessed against the inclusion criteria. RESULTS: Fifteen studies met the inclusion criteria. This ILR found no research with a specific focus on caregiving relationships for older adults. The literature did however identify relational issues such as support, planning and provider attitude as fundamental to the success of CDC. CONCLUSION: Relationships within the caregiving triad have important implications for the way CDC is enacted, particularly when the care recipient has dementia, suggesting this population as a priority for future research.
Assuntos
Cuidadores/organização & administração , Serviços de Saúde Comunitária/organização & administração , Prestação Integrada de Cuidados de Saúde/organização & administração , Demência/terapia , Pessoal de Saúde/organização & administração , Serviços de Saúde para Idosos/organização & administração , Relações Interpessoais , Assistência Centrada no Paciente/organização & administração , Idoso , Atitude do Pessoal de Saúde , Cuidadores/psicologia , Demência/diagnóstico , Demência/psicologia , Relações Familiares , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Pessoal de Saúde/psicologia , Humanos , Masculino , Modelos Organizacionais , Participação do Paciente , Satisfação do Paciente , Relações Profissional-Família , Relações Profissional-Paciente , Participação dos InteressadosRESUMO
OBJECTIVO: Conocer las experiencias de pacientes y cuidadores que conviven con la enfermedad pulmonar obstructiva crónica avanzada, el impacto de sus síntomas y las necesidades de atención que generan en su contexto funcional, emocional y social. DISEÑO: Estudio cualitativo. Perspectiva fenomenológica. Recogida de datos durante 2013-2015. EMPLAZAMIENTO: Atención primaria, hospitalaria e intermedia. Osona (Barcelona). PARTICIPANTES Y/O CONTEXTOS: Diez pacientes de atención primaria con enfermedad pulmonar obstructiva crónica avanzada, 10 cuidadores principales respectivos y 19 profesionales de atención primaria, 2 neumólogos, 2 de cuidados paliativos, implicados en su atención y un psicólogo clínico. MÉTODO: Muestreo teórico. Entrevistas semiestructuradas y en profundidad a pacientes, cuidadores y profesionales (47 entrevistas). RESULTADOS: Las temáticas emergentes identificadas en las entrevistas de pacientes y cuidadores hacen referencia a la disnea, síntoma predominante sin un tratamiento efectivo y con un gran impacto en la vida de pacientes y cuidadores. Un síntoma con gran repercusión funcional, emocional y social al que es necesario adaptarse para sobrevivir. CONCLUSIONES: La atención adecuada de los pacientes con enfermedad pulmonar obstructiva crónica, más allá de las medidas farmacológicas para controlar los síntomas respiratorios, pasa por la comprensión del sufrimiento, las pérdidas y las limitaciones que provoca en sus vidas y las de sus cuidadores. Un abordaje paliativo, holístico y cercano a sus vivencias reales, junto al empoderamiento para la adaptación a los síntomas debilitantes, podría contribuir a una vida mejor en la etapa final de la enfermedad
AIM: To understand the experiences of patients and caregivers living with advanced chronic obstructive pulmonary disease, the impact of their symptoms and care needs arising from a functional, emotional, and social context. DESIGN: Qualitative study. Phenomenological perspective. Data were collected during 2013-2015. SETTING: Primary, secondary and intermediate care. Osona (Barcelona). PARTICIPANTS. The study included 10 Primary Care patients with advanced chronic obstructive pulmonary disease, their respective 10 caregivers, and 19 primary care professionals, as well as 2 lung specialists, 2 palliative care professionals involved in their care, and one clinical psychologist. METHOD: Theoretical sampling. Semi-structured and in-depth interviews with patients, caregivers, and professionals (47 interviews). RESULTS: The emergent topics identified in patients and caregivers interviews refer to dyspnoea, the predominant symptom without effective treatment and with a major impact on patients and caregivers lives. A symptom with great functional, emotional and social repercussions to which they need to adapt in order to survive. CONCLUSIONS: Beyond pharmacological measures to control respiratory symptoms, proper care of patients with chronic obstructive pulmonary disease, requires understanding of suffering, the losses and limitations that it causes in their lives and those of their caregivers. A palliative, holistic and closer approach to their real experiences, together with an empowerment to adapt to debilitating symptoms, could contribute to a better life in the end-stages of the disease
Assuntos
Humanos , Masculino , Feminino , Entrevistas como Assunto/métodos , Doença Pulmonar Obstrutiva Crônica/enfermagem , Doença Pulmonar Obstrutiva Crônica/prevenção & controle , Doença Pulmonar Obstrutiva Crônica/terapia , Dispneia/complicações , Dispneia/epidemiologia , Dispneia/prevenção & controle , Cuidadores/educação , Cuidadores/organização & administração , Assistência Centrada no Paciente/organização & administração , Cuidados Paliativos , Cuidados Paliativos/métodos , Cuidados Paliativos/organização & administração , Assistência Centrada no Paciente , 25783/métodos , 25783/prevenção & controle , Atenção Primária à Saúde , Isolamento Social/psicologiaRESUMO
OBJETIVO: El objetivo del presenta estudio es el desarrollo y validación de una escala para medir la dedicación al cuidado en personas cuidadoras de mayores dependientes, en la esfera de las actividades básicas de la vida diaria (ABVD). DISEÑO: Estudio descriptivo transversal. Emplazamiento: Atención primaria (comunidad autónoma de Andalucía, España). PARTICIPANTES: Muestra probabilística de 200 personas cuidadoras de familiares mayores dependientes de la comarca cordobesa del Alto Guadalquivir. MEDICIONES PRINCIPALES: Validación de contenido por expertos, validez de constructo (mediante análisis factorial exploratorio), validez divergente y fiabilidad (consistencia interna, estabilidad y concordancia interobservadores). RESULTADOS: El valor del alfa de Cronbach fue 0,86. El coeficiente de correlación intraclase para la fiabilidad test-retest fue de 0,96 y para la concordancia interobservadores fue de 0,88. Al dividir la muestra en 2 grupos en función del nivel de sobrecarga (presencia y ausencia), la puntuación de la escala fue significativamente diferente en cada grupo (p = 0,001). El análisis factorial reveló la existencia de un único factor que explicaba el 64% de la varianza. CONCLUSIONES: La escala desarrollada permite una adecuada medición de la dedicación al cuidado en la esfera de las ABVD en personas cuidadoras de mayores dependientes, ya que es un instrumento de fácil y rápida administración, que es bien aceptado por las personas cuidadoras, presenta adecuados resultados psicométricos y se ajusta a la frecuencia de dedicación, al tipo de necesidad atendida y al nivel de dependencia de cada necesidad
OBJECTIVE: To develop and validate a scale to measure caregiving dedication regarding activities of daily living in caregivers of dependent older people. DESIGN: Cross-sectional study. LOCATION: Primary Health Care (Andalusia, Spain). PARTICIPANTS: a probabilistic sample of 200 caregivers of older relatives from Córdoba, Spain. MAIN MEASUREMENTS: Content validation by experts, construct validity (by exploratory factor analysis), divergent validity and reliability (internal consistency, test-retest reliability and inter-observers reliability). RESULTS: Cronbach's alpha was 0.86. Intraclass Correlation Coefficient was 0.96 for test-retest reliability and 0.88 for inter-observers reliability. When the sample was divided in two groups according to perceived burden level (presence and absence), the perceived burden was significantly different in each group(P=.001). The factor analysis revealed one only factor that explained 64% of the variance. CONCLUSIONS: The scale allows a suitable measure of caregiving dedication regarding activities of daily living in caregivers of older people, because this scale allows a quickly, easy administration, is well accepted by caregivers, has acceptable psychometric results and includes the frequency of caregiving, the kind of attended need and the dependence level in each need
Assuntos
Feminino , Humanos , Masculino , Cuidadores/estatística & dados numéricos , Cuidadores/normas , Cuidadores , Idoso Fragilizado/estatística & dados numéricos , Atividades Cotidianas/psicologia , Cuidadores/organização & administração , /normas , Saúde do Idoso Institucionalizado , Atenção Primária à Saúde/organização & administração , Atenção Primária à Saúde/estatística & dados numéricos , Estudos Transversais/métodos , Repertório de BarthelRESUMO
The recent development in optimising palliative care standards in thoracic oncology is associated with an increased demand in specialized communication skills. Standardised and integrated assessments of the palliative care need of the patient is met by limited health care resources. The model of communication described in this article emphasizes the need to structure palliative distress assessment of the patient. Communication pathways are shown as a platform to evaluate and support patient and caregivers. Standards to establish algorithms of communication in palliative care will improve the very important interaction between patient and caregivers.
Assuntos
Cuidadores/organização & administração , Prestação Integrada de Cuidados de Saúde/organização & administração , Modelos Organizacionais , Cuidados Paliativos/organização & administração , Relações Médico-Paciente , Estresse Psicológico/terapia , Neoplasias Torácicas/terapia , Cuidadores/psicologia , Comunicação em Saúde , Humanos , Cuidados Paliativos/psicologia , Estresse Psicológico/diagnóstico , Estresse Psicológico/psicologia , Assistência Terminal/organização & administração , Assistência Terminal/psicologia , Neoplasias Torácicas/diagnóstico , Neoplasias Torácicas/psicologia , Resultado do TratamentoRESUMO
PURPOSE: While the burdens and rewards of cancer caregiving are well-documented, few studies describe the activities involved in cancer caregiving. We employed a social-ecological perspective to explore the work of cancer caregiving for long-term colorectal cancer (CRC) survivors with ostomies. We focused on healthcare management, defined here as the ways in which informal caregivers participate in healthcare-related activities such as managing medical appointments and information, obtaining prescriptions and supplies, and providing transportation to obtain healthcare services. METHODS: This ethnographic study included 31 dyads consisting of long-term CRC survivors (>5 years postsurgery) and their primary informal caregivers. Survivors were members of integrated healthcare delivery systems. We interviewed participants using in-depth interviews and followed a subset using ethnographic methods. Medical record data ascertained survivors' cancer and medical history. RESULTS: We classified families into a matrix of healthcare management resources (high vs. low) and survivors' healthcare needs (high vs. low). We found that patients' healthcare needs did not always correspond to their caregivers' management activities. CRC survivors with high needs had more unmet needs when caregivers and survivors differed in the level of caregiver involvement they desired or regarded as optimal. This discrepancy was particularly evident in nonmarital relationships. CONCLUSIONS: As cancer survivors age and grow in number, it becomes increasingly important to understand how informal caregivers support survivors' well-being. Framing healthcare management as a component of caregiving provides a useful perspective that could facilitate future research and interventions to support survivors, particularly those with significant sequelae from their cancer treatment.
Assuntos
Cuidadores/organização & administração , Neoplasias Colorretais/reabilitação , Colostomia/reabilitação , Assistência Centrada no Paciente/organização & administração , Idoso , Idoso de 80 Anos ou mais , Neoplasias Colorretais/cirurgia , Feminino , Necessidades e Demandas de Serviços de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Sobreviventes , Fatores de TempoRESUMO
Objetivo. Generar conocimiento sobre las necesidades de los cuidadores informales de las personas con la enfermedad de Parkinson y analizar la evidencia de las intervenciones de apoyo social para satisfacer estas necesidades. Contexto. El Parkinson es una enfermedad con alta prevalencia que causa una serie de necesidades físico-psico-socio-emocionales en el paciente y en su cuidador informal. La calidad de vida y bienestar del cuidador informal influye en el cuidado que ofrece al paciente. Sin embargo, sus necesidades no están claramente representadas en la literatura. Metodología. Se presenta una revisión bibliográfica no sistemática de la evidencia disponible en las bases de datos: Pubmed-Medline, PsycINFO, Cinahl, Cochrane Library, CUIDEN y BIREME, publicada en el período 2001-2011. Además, se ha realizado una búsqueda manual revisando las tablas de contenidos de los últimos cinco años en las revistas relevantes relacionadas con el tema de este trabajo y se ha usado la técnica de bola de nieve para buscar más referencias relacionadas. Resultados. Los cuidadores informales tienen gran cantidad de necesidades que la mayoría de las veces no cubren con el apoyo social que reciben. Las ayudas más demandadas por ellos son: el relevo de cuidado, ayuda económica, el apoyo socioemocional continuo y la coordinación del cuidado multidisciplinar. Precisamente, son las menos ofertadas por los profesionales. Conclusiones. El resultado de esta revisión evidencia la urgencia de la proposición del apoyo social por parte de los profesionales del ámbito sociosanitario que asegure el cuidado holístico y personalizado al paciente, promocionando al mismo tiempo la salud de los cuidadores, según sus necesidades (AU)
Objective: To develop knowledge about the needs of informal caregivers of people with Parkinsons disease and analyze the evidence of social support interventions to meet these needs. Background: Parkinsons disease is a highly prevalent disease that causes a range of physical-psycho-social-emotional needs in the patient and his/her informal caregiver. Although quality of life and wellbeing of informal caregivers affect the care they provide patients with, their needs are not clearly represented in the literature. Methods: A non systematic literature review of the evidence available in databases: PubMed, Medline, PsycINFO, CINAHL, Cochrane Library, BIREME and CUIDEN, published in the period 2001-2011. In addition, a manual search by reviewing the table of contents of the last 5 years in relevant journals related to the topic of this work and the snowballing technique have taken place. Results: Informal caregivers have lots of needs that are not covered by the social support they receive. Caregivers most demanded types of support are respite care, financial and socio-emotional support, and coordination of continued multidisciplinary care. Precisely, these are rarely offered by professionals. Conclusions: The results of this review evidence that health professionals must provide social support to ensure holistic and personalized care to patients, and also to ensure caregivers health as needed(AU)
Assuntos
Humanos , Masculino , Feminino , Cuidadores/organização & administração , Cuidadores/normas , Cuidadores , Doença de Parkinson/enfermagem , Cuidadores/legislação & jurisprudência , Cuidadores/estatística & dados numéricos , Qualidade de Vida/psicologia , Apoio Social , /psicologiaAssuntos
Cuidadores/ética , Instituições de Caridade/ética , Maus-Tratos Infantis/prevenção & controle , Cura pela Fé/ética , Altruísmo , Cuidadores/organização & administração , Instituições de Caridade/organização & administração , Criança , Maus-Tratos Infantis/estatística & dados numéricos , Pré-Escolar , Feminino , Humanos , Masculino , Avaliação das Necessidades , Organizações sem Fins Lucrativos/ética , Organizações sem Fins Lucrativos/organização & administração , Reino UnidoRESUMO
Introducción. El impacto en salud del daño cerebral adquirido (DCA) se manifiesta no solo en los pacientes sino también en la pérdida de calidad de vida relacionada con la salud (CVRS) de sus cuidadores. Los objetivos de este estudio fueron medir tanto la pérdida de CVRS como la sobrecarga de los cuidadores de pacientes con DCA. Material y métodos. Se llevó a cabo un estudio retrospectivo con 76 cuidadores de pacientes con DCA. La encuesta recogió información acerca de las características sociodemográficas, la carga de los cuidados (escala de Zarit) y la CVRS (cuestionario EuroQol) de los cuidadores. Para analizar el efecto de las diferentes variables se construyeron modelos de regresión lineal múltiple y regresión logística. Resultados. Los cuidadores fueron predominantemente mujeres de más de 50 años, jubiladas o dedicadas a las tareas domésticas y que cuidaban a su marido o a uno de sus padres. Un tercio mostró un riesgo alto de claudicación. La media de la CVRS obtenida con EuroQol pasó de una cifra similar a la de la población general (0,90) en el grupo sin sobrecarga a 0,67 en el grupo con riesgo de claudicación. Los modelos de regresión explicaron mejor la sobrecarga que la pérdida de calidad de vida. Conclusiones. Los cuidadores de pacientes con daño cerebral sufren una importante pérdida de CVRS con relación a la población general. El deterioro radica en las dimensiones mentales y depende del nivel de la sobrecarga(AU)
Introduction. The health impact of acquired brain injury (ABI) is not only apparent in the patient, but also in the loss of health related quality of life (HRQol) of their carers. The objectives of this study were to measure the loss of HRQol as well as the burden of the carers of patients with ABI. Material and methods. A retrospective study was conducted with 76 carers of patients with ABI. A questionnaire was used to collect information on the sociodemographic aspects, carer burden (Zarit Scale) and the HRQol (EuroQol Questionnaire) of the carers. A multiple linear regression model was constructed to analyse the effect of the different variables. Results. The carers were predominantly women over 50years, retired or dedicated to domestic tasks and who cared for their husband or one of their parents. One third showed a high risk of claudication. The mean HRQol obtained with the EuroQol went from a similar score to that of the general population (0.9) in the group without burden, to 0.67 in the group with risk of claudication. The regression models explained the burden better than the loss in quality of life. Conclusions. Carers of patients with brain injury suffer a significant loss in HRQol compared to the general population. The deterioration arises from the mental dimensions and depends on the level of burden(AU)
Assuntos
Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Qualidade de Vida/psicologia , Cuidadores/organização & administração , Cuidadores/normas , Cuidadores , Lesões Encefálicas Traumáticas/epidemiologia , Lesões Encefálicas Traumáticas/psicologia , Modelos Lineares , Cuidadores/psicologia , Lesões Encefálicas Traumáticas/reabilitação , Estudos Retrospectivos , Inquéritos e Questionários , Modelos Logísticos , Repertório de Barthel , Análise de Dados/métodosAssuntos
Cuidadores/organização & administração , Redes Comunitárias/organização & administração , Comportamento Cooperativo , Relações Interpessoais , Cultura Organizacional , Apoio Social , Atitude Frente a Saúde , Serviços de Saúde Comunitária , Humanos , Percepção Social , Responsabilidade Social , Seguridade Social , Estados UnidosRESUMO
AIM: To investigate the role of community-based health profession and carer organisations in Victoria in minimising harm to older people from heatwaves. METHODS: A qualitative study based on semistructured interviews was conducted in Victoria, Australia. Twelve people were interviewed, representing four professional groups that support the health of older Victorians who reside at home. RESULTS: None of the health profession and carer organisations studied had formalised heatwave strategies; however, their staff conduct a range of activities before and during heatwaves that may reduce harm to older clients. Interviewees discussed roles their organisations could play in a heatwave response plan, including coordination, identification of high-risk individuals and education. All saw a need for extra resources and training if responses to heatwaves were required more frequently. CONCLUSION: It may be feasible to utilise the existing services and infrastructure of community-based health profession and carer organisations operating in Victoria within a State-wide Heatwave Response plan; however, this will require extra resources, training and coordination.
Assuntos
Cuidadores , Serviços de Saúde Comunitária , Redes Comunitárias , Serviços de Saúde para Idosos , Transtornos de Estresse por Calor/prevenção & controle , Atitude do Pessoal de Saúde , Cuidadores/organização & administração , Serviços de Saúde Comunitária/organização & administração , Redes Comunitárias/organização & administração , Prestação Integrada de Cuidados de Saúde , Conhecimentos, Atitudes e Prática em Saúde , Planejamento em Saúde , Serviços de Saúde para Idosos/organização & administração , Humanos , Vida Independente , Comunicação Interdisciplinar , Entrevistas como Assunto , Objetivos Organizacionais , Equipe de Assistência ao Paciente , Educação de Pacientes como Assunto , Papel Profissional , Pesquisa Qualitativa , Estações do Ano , VitóriaRESUMO
This article provides a framework labeled ACT that aims to successfully integrate family caregivers and patients into one unit of care, as dictated by the hospice philosophy. ACT (assessing caregivers for team interventions) is based on the ongoing assessment of the caregiver background context, primary, secondary, and intrapsychic stressors as well as outcomes of the caregiving experience and subsequently, the design and delivery of appropriate interventions to be delivered by the hospice interdisciplinary team. Interventions have to be tailored to a caregiver's individual needs; such a comprehensive needs assessment allows teams to customize interventions recognizing that most needs and challenges cannot be met by only one health care professional or only one discipline. The proposed model ensures a holistic approach to address the multifaceted challenges of the caregiving experience.
Assuntos
Cuidadores/organização & administração , Necessidades e Demandas de Serviços de Saúde/organização & administração , Assistência Domiciliar/organização & administração , Cuidados Paliativos na Terminalidade da Vida/organização & administração , Equipe de Assistência ao Paciente/organização & administração , Atitude Frente a Morte , Comportamento Cooperativo , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Modelos Teóricos , Neoplasias/terapia , Relações Profissional-Paciente , Qualidade da Assistência à Saúde/organização & administraçãoRESUMO
BACKGROUND: It is generally assumed that integrated care has a cost-saving potential in comparison with traditional care. However, there is little evidence on this potential with respect to integrated nursing home care. AIMS AND OBJECTIVES: DESIGN/METHODS/SETTINGS/PARTICIPANTS: Between 1999 and 2003, formal and informal caregivers of different nursing homes in the Netherlands recorded activities performed for residents with somatic or psycho-social problems. In total, 23,380 lists were analysed to determine the average costs of formal and informal care per activity, per type of resident and per nursing home care type. For formal care activities, the total personnel costs per minute (in Euro) were calculated. For informal care costs, two shadow prices were used. RESULTS: Compared to traditional care, integrated care had lower informal direct care costs per resident and per activity and lower average costs per direct activity (for a set of activities performed by formal caregivers). The total average costs per resident per day and the costs of formal direct care per resident, however, were higher as were the costs of delivering a set of indirect activities to residents with somatic problems. CONCLUSIONS: The general assumption that integrated care has a cost-saving potential (per resident or per individual activity) was only partially supported by our research. Our study also raised issues which should be investigated in future research on integrated nursing home care.
Assuntos
Prestação Integrada de Cuidados de Saúde/economia , Serviços de Saúde para Idosos/economia , Assistência Domiciliar/economia , Idoso , Cuidadores/organização & administração , Continuidade da Assistência ao Paciente/economia , Redução de Custos , Análise Custo-Benefício , Custos Diretos de Serviços/estatística & dados numéricos , Família , Avaliação Geriátrica , Necessidades e Demandas de Serviços de Saúde , Pesquisa sobre Serviços de Saúde , Humanos , Descrição de Cargo , Países Baixos , Pesquisa em Administração de Enfermagem , Casas de Saúde/economia , Estudos de Tempo e Movimento , Carga de Trabalho/economiaRESUMO
Orphans are an increasing problem in developing countries particularly in Africa; due to the HIV/AIDS pandemic; and needs collective effort in intervention processes by including all stakeholders right from the grass roots level. This paper attempts to present the role of traditional healers in psychosocial support for orphan children in Dar-es-Salaam City with special focus on those whose parents have died because of HIV/AIDS. Six traditional healers who were involved in taking care of orphans were visited at their "vilinge" (traditional clinics). In total they had 72 orphans, 31 being boys and 41 being girls with age range from 3 years to 19. It was learned that traditional healers, besides providing remedies for illnesses/diseases of orphans, they also provided other basic needs. Further, they even provided psychosocial support allowing children to cope with orphan hood life with ease. Traditional healers are living within communities at the grass roots level; and appear unnoticed hidden forces, which are involved in taking care of orphans. This role of traditional healers in taking care of orphans needs to be recognised and even scaling it up by empowering them both in financial terms and training in basic skills of psychosocial techniques in how to handle orphans, in order to reduce discrimination and stigmatisation in the communities where they live.