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[PMID]:29206977
[Au] Autor:Brandão D; Ribeiro O; Martín I
[Ad] Endereço:Research and Education Unit on Ageing (UNIFAI/ICBAS-UP), Institute of Biomedical Sciences Abel Salazar, Department of Behavioral Sciences, University of Porto, Porto.
[Ti] Título:Underuse and Unawareness of Residential Respite Care Services in Dementia Caregiving: Constraining the Need for Relief.
[So] Source:Health Soc Work;41(4):254-262, 2016 Nov 20.
[Is] ISSN:0360-7283
[Cp] País de publicação:United States
[La] Idioma:eng
[Ab] Resumo:This article describes an analysis of the use of residential respite care services and the factors that influence the use of such services among informal caregivers of people with dementia. The authors studied a sample of 223 caregivers participating in a community-based intervention project in northern Portugal. Participants provided information on their overall caregiving situation and on their use or willingness to use respite care services. Results showed that fewer than 6 percent of caregivers accessed the services and that although most caregivers were not familiar with these services, they recognized their importance and strongly considered the possibility of using them. Part-time care, lower levels of gratification, higher burden, and the care receiver's attendance of day center supported the willingness to use residential respite services. The limited offer, not knowing about the services, and cultural issues related to the family duties within the caregiving role can explain the low use of these services. Social work professionals have an important role in promoting residential respite care services, and thereby helping to reduce caregiving overload.
[Mh] Termos MeSH primário: Conscientização
Cuidadores/psicologia
Demência/enfermagem
Cuidados Intermitentes/utilização
[Mh] Termos MeSH secundário: Adulto
Idoso
Idoso de 80 Anos ou mais
Estudos Transversais
Feminino
Seres Humanos
Masculino
Meia-Idade
Portugal
Inquéritos e Questionários
[Pt] Tipo de publicação:JOURNAL ARTICLE
[Em] Mês de entrada:1802
[Cu] Atualização por classe:180227
[Lr] Data última revisão:
180227
[Sb] Subgrupo de revista:IM
[Da] Data de entrada para processamento:171206
[St] Status:MEDLINE
[do] DOI:10.1093/hsw/hlw041


  2 / 959 MEDLINE  
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[PMID]:28486069
[Au] Autor:Wolkowski A; Carr SM
[Ad] Endereço:Dove House Hospice, Chief Executive, Hull, UK.
[Ti] Título:Does respite care address the needs of palliative care service users and carers? Their perspectives and experiences.
[So] Source:Int J Palliat Nurs;23(4):174-185, 2017 Apr 02.
[Is] ISSN:1357-6321
[Cp] País de publicação:England
[La] Idioma:eng
[Ab] Resumo:AIM: To establish whether respite care addresses the needs of palliative care service users and carers. BACKGROUND: Respite care is often described in UK policy and guidance as a key need to providing support for this group and yet little is known about it and there is a lack of research to support its efficacy. DESIGN: The approach was qualitative and the methodology was interpretive. The method used was constructivist grounded theory. METHODS: Data collection was carried out by unstructured informal interview with three couples and two bereaved carers who had experienced hospice respite care. RESULTS: Findings showed that respite care is valued by palliative care service users and carers although there are some fundamental tensions in service models which limit its potential. CONCLUSION: A reframing of respite care as an empathic response within a new palliative care approach is proposed. Within this, the centrality of the relationship is reinforced.
[Mh] Termos MeSH primário: Cuidadores
Necessidades e Demandas de Serviços de Saúde
Cuidados Intermitentes
Cônjuges
[Mh] Termos MeSH secundário: Atitude Frente à Saúde
Feminino
Teoria Fundamentada
Cuidados Paliativos na Terminalidade da Vida
Enfermagem de Cuidados Paliativos na Terminalidade da Vida
Seres Humanos
Masculino
Esclerose Múltipla/enfermagem
Doença de Parkinson/enfermagem
Doença Pulmonar Obstrutiva Crônica/enfermagem
Pesquisa Qualitativa
Apoio Social
[Pt] Tipo de publicação:JOURNAL ARTICLE
[Em] Mês de entrada:1706
[Cu] Atualização por classe:170622
[Lr] Data última revisão:
170622
[Sb] Subgrupo de revista:N
[Da] Data de entrada para processamento:170510
[St] Status:MEDLINE
[do] DOI:10.12968/ijpn.2017.23.4.174


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[PMID]:28486065
[Au] Autor:Hassan HA
[Ad] Endereço:Editor, International Journal of Palliative Nursing.
[Ti] Título:Advancing the field: conferences and academic palliative nursing.
[So] Source:Int J Palliat Nurs;23(4):159, 2017 Apr 02.
[Is] ISSN:1357-6321
[Cp] País de publicação:England
[La] Idioma:eng
[Mh] Termos MeSH primário: Enfermagem de Cuidados Paliativos na Terminalidade da Vida
[Mh] Termos MeSH secundário: Cuidadores
Congressos como Assunto
Seres Humanos
Casas de Saúde
Publicações Periódicas como Assunto
Cuidados Intermitentes
Assistência Terminal
[Pt] Tipo de publicação:EDITORIAL; INTRODUCTORY JOURNAL ARTICLE
[Em] Mês de entrada:1706
[Cu] Atualização por classe:170622
[Lr] Data última revisão:
170622
[Sb] Subgrupo de revista:N
[Da] Data de entrada para processamento:170510
[St] Status:MEDLINE
[do] DOI:10.12968/ijpn.2017.23.4.159


  4 / 959 MEDLINE  
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[PMID]:28222344
[Au] Autor:Genik LM; McMurtry CM; Breau LM
[Ad] Endereço:Department of Psychology, University of Guelph, Canada. Electronic address: lgenik@uoguelph.ca.
[Ti] Título:Caring for children with intellectual disabilities part 2: Detailed analyses of factors involved in respite workers' reported assessment and care decisions.
[So] Source:Res Dev Disabil;63:1-10, 2017 Apr.
[Is] ISSN:1873-3379
[Cp] País de publicação:United States
[La] Idioma:eng
[Ab] Resumo:Respite workers (RW) commonly care for children with intellectual disabilities (ID), and pain is common for these children. Little is known about factors which inform RW pain assessment and management-related decisions. OBJECTIVES: To describe/determine the following in response to a series of pain-related scenarios (e.g., headache, falling): (1) factors considered important by RW when assessing children with ID's pain; (2) whether children's verbal ability impacts pain assessment factors considered; (3) RW assessment and management approach. PARTICIPANTS: Fifty-six RW (18-67 years, M =33.37, 46 female). PROCEDURE/MEASURES: In an online survey, participants read and responded to six vignettes manipulating child verbal ability (verbal, nonverbal) and pain source. RESULTS: The factors most frequently considered when assessing pain were child behavior (range: 20-57.4%), and history (e.g., pain, general; 3.7-38.9%). Factors did not vary by child's verbal ability. RW indicated varied assessment and management-related actions (range: 1-11) for each scenario. DISCUSSION: Findings suggest: a) factors informing pain assessment did not depend on whether or not the child was verbal and b) a degree of flexibility in RW response to pain across situations. While these findings are encouraging, ensuring RW have adequate pain assessment and management knowledge specific to children with ID is critical.
[Mh] Termos MeSH primário: Pessoal Técnico de Saúde
Deficiência Intelectual/enfermagem
Dor/enfermagem
Cuidados Intermitentes
[Mh] Termos MeSH secundário: Adolescente
Adulto
Idoso
Criança
Feminino
Seres Humanos
Masculino
Meia-Idade
Ontário
Dor/diagnóstico
Manejo da Dor
Medição da Dor
Adulto Jovem
[Pt] Tipo de publicação:JOURNAL ARTICLE
[Em] Mês de entrada:1710
[Cu] Atualização por classe:171017
[Lr] Data última revisão:
171017
[Sb] Subgrupo de revista:IM
[Da] Data de entrada para processamento:170222
[St] Status:MEDLINE


  5 / 959 MEDLINE  
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[PMID]:28208103
[Au] Autor:Genik LM; McMurtry CM; Breau LM
[Ad] Endereço:Department of Psychology, University of Guelph, Canada. Electronic address: lgenik@uoguelph.ca.
[Ti] Título:Caring for children with intellectual disabilities part 1: Experience with the population, pain-related beliefs, and care decisions.
[So] Source:Res Dev Disabil;62:197-208, 2017 Mar.
[Is] ISSN:1873-3379
[Cp] País de publicação:United States
[La] Idioma:eng
[Ab] Resumo:Some children with intellectual disabilities (ID): experience pain more frequently than children without ID, express their pain differently, and are incapable of providing self-reports. No research has examined disability and pain-related beliefs of respite workers (RW) and their relations to pain assessment and management decisions for children with ID. OBJECTIVES: (1) compare disability and pain-related beliefs between RW and a sample with little experience in ID; (2) determine whether individuals' beliefs and personal characteristics are related to pain assessment and management decisions. PARTICIPANTS: Fifty-six RW (aged: 18-67 years, M =33.37, 46 female) and 141 emerging adults (aged: 18-31 years, M =19.67, 137 female). PROCEDURE/MEASURES: In an online survey, participants responded to six vignettes depicting pain in children with ID, and completed measures of pain and disability-related beliefs. RESULTS/DISCUSSION: Compared to those without experience, RW held more positive disability-related beliefs, t(192)=4.23, p<0.001. Participants' pain-related beliefs (e.g., sensitivity to pain) differed depending on severity of the child's ID and participant group. Participants' pain-related beliefs predicted care decisions. Results provide initial insight into RW pain-related beliefs about children with ID, and a basic understanding of the relations among pain beliefs, personal characteristics and pain-related decisions.
[Mh] Termos MeSH primário: Pessoal Técnico de Saúde
Atitude do Pessoal de Saúde
Deficiência Intelectual/enfermagem
Dor/enfermagem
Cuidados Intermitentes
[Mh] Termos MeSH secundário: Adolescente
Adulto
Idoso
Criança
Feminino
Seres Humanos
Masculino
Meia-Idade
Ontário
Índice de Gravidade de Doença
Inquéritos e Questionários
Adulto Jovem
[Pt] Tipo de publicação:JOURNAL ARTICLE
[Em] Mês de entrada:1710
[Cu] Atualização por classe:171002
[Lr] Data última revisão:
171002
[Sb] Subgrupo de revista:IM
[Da] Data de entrada para processamento:170217
[St] Status:MEDLINE


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[PMID]:27941455
[Au] Autor:Bigham A; Cunningham J; Johnston K
[Ad] Endereço:Amy Bigham, DNP, RN, FNP-BC, is an associate professor at the Ida V. Moffett School of Nursing, Samford University, Birmingham, Alabama, and a practicing family nurse practitioner. Amy has been an active participant in the respite care program since its inception. Jill Cunningham, DNP, RN, FNP-BC, is an associate professor and department chair at the Ida V. Moffett School of Nursing. Jill has many years of experience with patients with developmental disabilities. She is the founder and director of the respite care program. Kristen Johnston, DNP, RN, FNP-BC, is an assistant professor at the Ida V. Moffett School of Nursing. Her doctoral work addressed parental stress and respite care.
[Ti] Título:Respite Care for Families of Children with Disabilities: A University/Faith Community Model.
[So] Source:J Christ Nurs;34(1):52-58, 2017 Jan/Mar.
[Is] ISSN:0743-2550
[Cp] País de publicação:United States
[La] Idioma:eng
[Ab] Resumo:Families of children with disabilities or special healthcare needs report respite care as a great need, yet availability of such care is scarce. A partnership developed between a nursing school in the Southeast and a faith community, to provide respite care and summer camps, resulted in a win-win situation for families, children, interprofessional students and educators, the faith community, and volunteers. This article explains the need for respite, how schools of nursing and faith communities can partner, and the benefits to all stakeholders.
[Mh] Termos MeSH primário: Cristianismo
Crianças com Deficiência
Saúde da Família
Cuidados Intermitentes
[Mh] Termos MeSH secundário: Adolescente
Criança
Pré-Escolar
Feminino
Necessidades e Demandas de Serviços de Saúde
Pesquisa sobre Serviços de Saúde
Seres Humanos
Lactente
Recém-Nascido
Masculino
Modelos Organizacionais
Estados Unidos
[Pt] Tipo de publicação:JOURNAL ARTICLE
[Em] Mês de entrada:1706
[Cu] Atualização por classe:170619
[Lr] Data última revisão:
170619
[Sb] Subgrupo de revista:N
[Da] Data de entrada para processamento:161213
[St] Status:MEDLINE


  7 / 959 MEDLINE  
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[PMID]:27550644
[Au] Autor:Smith CH; Graham CA; Herbert AR
[Ad] Endereço:Paediatric Palliative Care Service, Children's Health Queensland Hospital and Health Service, Brisbane, Queensland, Australia.
[Ti] Título:Respite needs of families receiving palliative care.
[So] Source:J Paediatr Child Health;53(2):173-179, 2017 Feb.
[Is] ISSN:1440-1754
[Cp] País de publicação:Australia
[La] Idioma:eng
[Ab] Resumo:AIM: The care of a child with a life-limiting condition proves an emotional, physical and financial strain on the family that provides care for their child. Respite care is one way which allows carers to receive some relief and support in the context of this burden of care. The provision of and the requirements for respite in this context is poorly understood. This survey aims to describe the types of respite care families receive, the respite that they would ideally receive and the barriers that prevent this. METHODS: A cohort of 34 families cared for by the Paediatric Palliative Care Service in Queensland were approached to participate in a 20-question survey about their current respite preferences for future respite, with 20 surveys returned. RESULTS: Three of the families (15%) reported receiving no respite in the previous 12 months. Families who received respite received a combination of formal respite (a structured care provider) and informal respite (family or friends). Ten families (50%) reported that they would want the time of respite changed. Barriers to receiving adequate respite included complexity of care of the child, financial barriers and lack of a respite provider. CONCLUSIONS: There is disparate provision of respite care with the main perceived barrier to attaining 'ideal respite' being the lack of a provider able to meet the complex care needs of their child. The provision of respite across diversity in geography; medical condition; social and cultural needs remains a challenge.
[Mh] Termos MeSH primário: Cuidadores/psicologia
Família/psicologia
Necessidades e Demandas de Serviços de Saúde
Cuidados Paliativos/psicologia
Cuidados Intermitentes
[Mh] Termos MeSH secundário: Adolescente
Criança
Pré-Escolar
Feminino
Seres Humanos
Lactente
Masculino
Queensland
Inquéritos e Questionários
[Pt] Tipo de publicação:JOURNAL ARTICLE
[Em] Mês de entrada:1710
[Cu] Atualização por classe:171017
[Lr] Data última revisão:
171017
[Sb] Subgrupo de revista:IM
[Da] Data de entrada para processamento:160824
[St] Status:MEDLINE
[do] DOI:10.1111/jpc.13324


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[PMID]:27438939
[Au] Autor:Whitmore KE
[Ad] Endereço:Director of the Graduate Health Systems Management Program, Marcella Niehoff School of Nursing, Loyola University Chicago, Maywood, IL.
[Ti] Título:The Concept of Respite Care.
[So] Source:Nurs Forum;52(3):180-187, 2017 Jul.
[Is] ISSN:1744-6198
[Cp] País de publicação:United States
[La] Idioma:eng
[Ab] Resumo:AIM: The aim of this article is to analyze the concept of respite care in the context of caring for a child with special healthcare needs. BACKGROUND: Respite care has often been identified as an important resource for caregivers of children with special healthcare needs. It can help provide a break from the constant demands of caregiving. DESIGN: A concept analysis was conducted using an evolutionary approach. DATA SOURCE: The data source for the concept analysis was a review of literature addressing respite care for caregivers of children with special healthcare needs. REVIEW METHODS: A review of the literature was conducted and a concept model was developed using an evolutionary approach. RESULTS: A theoretical definition of respite care is provided and the defining attributes, related concepts, antecedents, and consequences of respite care are shown in a diagram of the concept of respite care. CONCLUSIONS: The conceptual model provides a framework to help nurses better understand the concept of respite care in order to educate caregivers, provide appropriate referrals, serve as providers of respite care, and advocate for policy changes related to the provision of respite care services for caregivers of children with special healthcare needs.
[Mh] Termos MeSH primário: Cuidadores/psicologia
Crianças com Deficiência
Modelos de Enfermagem
Cuidados Intermitentes/métodos
[Mh] Termos MeSH secundário: Criança
Feminino
Seres Humanos
Masculino
Teoria de Enfermagem
Pais/psicologia
[Pt] Tipo de publicação:CASE REPORTS; JOURNAL ARTICLE; REVIEW
[Em] Mês de entrada:1708
[Cu] Atualização por classe:170817
[Lr] Data última revisão:
170817
[Sb] Subgrupo de revista:N
[Da] Data de entrada para processamento:160721
[St] Status:MEDLINE
[do] DOI:10.1111/nuf.12179


  9 / 959 MEDLINE  
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[PMID]:27927122
[Au] Autor:Hill K
[Ad] Endereço:LauraLynn Children's Hospice, Dublin.
[Ti] Título:Respite services for children with life-limiting conditions and their families in Ireland.
[So] Source:Nurs Child Young People;28(10):30-35, 2016 Dec 08.
[Is] ISSN:2046-2344
[Cp] País de publicação:England
[La] Idioma:eng
[Ab] Resumo:Appropriate respite care for children with life-limiting conditions (LLC) and their families is the cornerstone of high quality paediatric care. The effect of caring for children with LLC on families, including parental needs, cannot be underestimated and respite can give families support while caring for their children. There are many different types of respite care available in Ireland, including specialist respite, inhome respite or out-of-home respite; the wishes of the family should be sought when arranging care. Comparisons between Ireland and the UK have drawn similarities in the benefits and limitations of respite care. Although there are many positive attributes associated with respite care, there are inconsistencies between best practice recommendations and reality. Worldwide issues remain with a lack of funding for respite care. Such care should become an area which attracts funding for future research to improve the quality of life for these children.
[Mh] Termos MeSH primário: Serviços de Saúde da Criança
Acesso aos Serviços de Saúde
Enfermagem de Cuidados Paliativos na Terminalidade da Vida
Cuidados Intermitentes
[Mh] Termos MeSH secundário: Criança
Família
Política de Saúde
Seres Humanos
Irlanda
[Pt] Tipo de publicação:JOURNAL ARTICLE
[Em] Mês de entrada:1705
[Cu] Atualização por classe:170503
[Lr] Data última revisão:
170503
[Sb] Subgrupo de revista:N
[Da] Data de entrada para processamento:161209
[St] Status:MEDLINE


  10 / 959 MEDLINE  
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Registro de Ensaios Clínicos
[PMID]:27912740
[Au] Autor:Vandepitte S; Van Den Noortgate N; Putman K; Verhaeghe S; Annemans L
[Ad] Endereço:Department of Public Health, Universiteit Gent, De Pintelaan 185, 9000, Ghent, Belgium. Sophie.Vandepitte@ugent.be.
[Ti] Título:Effectiveness and cost-effectiveness of an in-home respite care program in supporting informal caregivers of people with dementia: design of a comparative study.
[So] Source:BMC Geriatr;16(1):207, 2016 Dec 02.
[Is] ISSN:1471-2318
[Cp] País de publicação:England
[La] Idioma:eng
[Ab] Resumo:BACKGROUND: Frequent hospitalization and permanent nursing home placement not only affect the well-being of persons with dementia, but also place great financial strain on society. Therefore, it is important to create effective strategies to support informal caregivers so that they can continue to perform their demanding role. Preliminary qualitative evidence suggests that community-based respite services can actually be important for caregivers, and that the level of evidence should be further established in terms of effectiveness. Therefore, a comparative study to assess the effectiveness and cost-effectiveness of an in-home respite care program will be initiated. METHODS: This manuscript described a quasi-experimental study to assess (cost)-effectiveness of an in-home respite care program to support informal caregivers of persons with dementia. STUDY POPULATION: 124 informal caregivers and persons with dementia will be included in the intervention group and will receive an in-home respite care program by an organization called Baluchon Alzheimer. 248 dyads will be included in the control group and will receive standard dementia care. The primary outcome is caregiver burden. Secondary outcomes are: quality of life of caregivers, frequency of behavioral problems of persons with dementia and the reactions of caregivers to those problems, intention to institutionalize the care-recipient, time to nursing home placement, resource use of the care-recipient, and willingness to pay for in-home respite care. When the trial demonstrates a difference in outcomes between both groups, within-trial and modeled cost-effectiveness analyses will be conducted in a separate economic evaluation plan to evaluate possible cost-effectiveness of the in-home respite care program compared to the control group receiving standard dementia care. Finally, the model based cost-effectiveness analyses will allow to extrapolate effects over a longer time horizon than the duration of the trial. DISCUSSION: This study will have great added value because to date no studies measured effectiveness and cost-effectiveness of an in-home respite care program of the Baluchon type. Results of this trial can thus give much more insight in potential benefits and disadvantages of community-based respite care. Conclusions based on this trial can help policy-makers in elaborating future directions of dementia care. TRIAL REGISTRATION: Clinicaltrials.gov Identifier NCT02630446 .
[Mh] Termos MeSH primário: Cuidadores
Efeitos Psicossociais da Doença
Demência
Qualidade de Vida
Cuidados Intermitentes
[Mh] Termos MeSH secundário: Adaptação Psicológica
Idoso
Cuidadores/economia
Cuidadores/psicologia
Análise Custo-Benefício
Demência/economia
Demência/psicologia
Demência/terapia
Feminino
Serviços de Assistência Domiciliar/organização & administração
Hospitalização/estatística & dados numéricos
Seres Humanos
Institucionalização/estatística & dados numéricos
Masculino
Avaliação de Processos e Resultados (Cuidados de Saúde)
Ensaios Clínicos Controlados Aleatórios como Assunto
Projetos de Pesquisa
Cuidados Intermitentes/economia
Cuidados Intermitentes/métodos
Cuidados Intermitentes/psicologia
[Pt] Tipo de publicação:COMPARATIVE STUDY; JOURNAL ARTICLE
[Em] Mês de entrada:1706
[Cu] Atualização por classe:170622
[Lr] Data última revisão:
170622
[Sb] Subgrupo de revista:IM
[Da] Data de entrada para processamento:161204
[Cl] Clinical Trial:ClinicalTrial
[St] Status:MEDLINE



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