Bakgrund: Närstående är genom mänsklig närhet och trygghet mycket värdefulla för patienter i palliativ vård. Idag sker en allt större del av den palliativa vården i hemmet vilket innebär att närstående ges en mer central roll i vårdandet. Forskning visar att närstående kan uppleva både emotionella, fysiska, sociala och psykologiska utmaningar vilket ökar risken för ohälsa. Det är av stor vikt att närstående blir sedda, erkända och inte känner sig ensamma i vårdandet. En intervention syftar till att avsiktligt bli involverad i en svår situation, antingen för att förbättra den eller för att förhindra att situationen försämras. Syfte: Syftet med litteraturöversikten var att belysa interventioner som uppmärksammar närstående inom palliativ hemsjukvård. Metod: En litteraturöversikt genomfördes utifrån syftet med studien. Både studier med kvalitativ- och kvantitativ design inkluderades. Artikelsökningar gjordes i databaserna CINAHL och PubMed. Resultatet baseras på tio vetenskapliga artiklar publicerade mellan år 2015-2020. Resultat: Resultatet beskrivs i tre kategorier utifrån likheter och tyngdpunkter i hur interventionerna utförs; interventioner som synliggör närstående, kunskapsbyggande interventioner och terapeutiska interventioner. Resultatet visar att det finns interventioner som uppmärksammar närstående till patienter i palliativ hemsjukvård och att dessa har effekt i form av minskad ångest, mindre vårdbörda och ökad livskvalitet hos närstående. Slutsats: Specialistsjuksköterskor i palliativ vård ska erbjuda stöd till patienter och närstående. Interventioner som uppmärksammar närstående i palliativ hemsjukvård finns och bör på ett strukturerat sätt erbjudas i klinisk verksamhet. / Background: The family members are important for the patient in palliative care. They provide security and are valuable. Today an increasing part of palliative care takes place in the home, which means that the family members are given a more central role in the care. Research shows that family members can experience both emotional, physical, social, and psychological challenges which increases the risk of illness. It is of great importance that the family members get the attention, are validated, and not feel alone in the care of the patient. Interventions aims to help family members to improve their situation or prevent the situation from getting worse. Aim: The aim with the literature review was to describe interventions that pay attention to family members in palliative home care. Method: The study design was a literature review. Both qualitative and quantitative publications were included. The databases PubMed and CINAHL were used to search the articles. A total of 10 articles, published between the years 2015–2020, were selected and analysed in the results of the literature review.   Results: The results are described in three categories based on similarities in how the intervention is made. The categories are interventions for the family members to make them visible and confirmed, knowledge-building interventions and therapeutic interventions. The results show that there are interventions that pay attention to family members in palliative home care and that these interventions have an effect that shows a reduction of anxiety, caregiver burden and more quality of life. Conclusion: Specialist nurses in palliative care should offer support to patients and their family members.  Interventions that make  the family members visible in palliative homecare exist and should be offered in a structured way.

This study investigated how patterns of in-home care utilization and predictors of service use differ for older adults based on whether they live in a rural or an urban environment and whether the service is provided from an informal, a formal, or a combination informal/formal source. The specific in-home services under consideration were: checking, continuous supervision, homemaker-household, meal preparation, nursing care, and personal care. Although the study was comparative in nature, the investigator was particularly interested in identifying patterns of service utilization that might be translated into effective and cost-efficient service delivery strategies for rural communities. The rural elderly population was the focus of this research because older people tend to live disproportionately in rural areas. Further, older rural residents seem to have more objective needs than their urban counterparts while they have access to fewer services. This study was based on data from the Statewide Survey of Older Virginians, a probability sample of 2,146 noninstitutionalized persons 60 years of age and older. The 87% response rate included 8% of the respondents who participated via an informant. A multiple regression analysis was performed for each of the eight subsamples into which the total sample was divided. The 20 independent variables were categorized according to Andersen's paradigm for conceptualizing service utilization as either predisposing, enabling, or need variables. The need variables were significant (p < .05) predictors of service use more often than the other categories, with ADL performance emerging as a significant predictor of service use across all subsamples. Evidence from existing service utilization literature formed the basis for five hypotheses included to focus the study. Results of the hypothesized relationships confirmed the generalization that this body of literature lacks the necessary precision to accurately profile rural and urban service users. Further investigation of utilization patterns of in-home care services was indicated by this research. / Ph. D.

This study addressed gaps in the literature on caregiver burden involving lack of information about the multiple strains of caregiving families, their coping patterns, and positive as well as negative aspects of caregiving. The primary objective was to examine the relationship among caregiving strains, patterns of coping responses employed, and the resulting objective and subjective burden. A model describing the relationship of these variables guided the study. The design was a mail survey of 97 caregivers living in Southwestern Virginia who were caring for a sick or disabled family member, age 60 or older (response rate=81%). Family strain was correlated with both subjective and objective burden. Only one coping pattern that dealt with understanding the medical situation was marginally correlated with objective burden at p < .10. No coping patterns were correlated with subjective burden. Based on stepwise multiple regression analysis, the variables that were significant in explaining the variance in objective burden were health of the caregiver and family strain. The presence of home health services and family strain were significant in explaining the variance in subjective burden. Qualitative analysis identified major themes of positive and negative aspects of caregiving, with the majority of caregivers reporting both. Implications of these findings for future research include the importance of examining family strain when studying caregiver burden, assessing problems with the conceptualization of coping, evaluating the effectiveness of different measures of coping patterns, and investigating the balance of costs and rewards related to caregiving. Implications for practice include the importance of health workers considering multiple sources of strain in the family. Caregivers need optimistic but realistic information about the situation. Staff members should promote the caregiver's confidence in the management of the medical situation. Governmental and service agencies need to assist caregivers in relieving problems with restrictions on time and activities, and provide an opportunity for the exchange of information about managing home care. Future researchers need to study the influence of home health services on caregiving by comparing the coping patterns and subjective and objective burden of caregivers who receive this service and those who do not. / Ph. D.

The study focused on the attitudes and beliefs regarding perceived and actual burden experienced by Latino caregivers and their use of formal support services. It also looked at the needs of Latino caregivers and explored their beliefs about why they had taken on the caregiver role, the responsibilities the role entailed, and coping skills used by these caregivers. Participants were obtained from two Alzheimer's caregiver support groups in the East Los Angeles area, and an adult day health care center in the high desert area of San Bernardino county. The author used both qualitative interviews and quantitative questionnaires. The findings suggest that high beliefs about responsibility to the family and low levels of service use may contribute to the stress and strain that these caregivers feel. Latino caregivers have been providing a significant amount of care without the help of sufficient formal services. Recommendations for social work practice, policy and further research are provided. Statistics for the study were generated by using SPSS Graduate Pack 13 for Windows.

Thesis (Ph.D.)--University of Melbourne, Faculty of Arts, 2007. / Typescript. Includes bibliographical references (leaves 327-345).

published_or_final_version / Community Medicine / Doctoral / Doctor of Philosophy

Le sujet de thèse s’intéresse à la chimiothérapie à domicile qui est l’effet combiné de l’augmentation des patients atteints du cancer et du succès de l’hospitalisation à domicile. Nous proposons à travers ce mémoire de thèse des solutions appropriées au pilotage de la chaîne de prise en charge de la chimiothérapie à domicile permettant d’évaluer et d’améliorer la performance de celle-ci. La première partie présente le contexte socio-économique de la chimiothérapie à domicile, ainsi que les contraintes réglementaires et organisationnelles pour sa mise en œuvre. La deuxième partie précise les spécificités d’une chaîne de prise en charge de la chimiothérapie à domicile et les problématiques liées à cette chaîne basée sur une revue de la littérature. La troisième partie se focalise sur la modélisation des processus de prise en charge de la chimiothérapie à domicile à partir d’un important travail de terrain. Un modèle générique de la chimiothérapie à domicile est dégagé du travail de modélisation qui constitue le fondement d’une proposition de classification des pratiques de la chimiothérapie à domicile. Un diagnostic individuel et comparatif des différentes familles d’approches sont également présentés dans cette partie. La quatrième partie présente les différentes applications développées pour évaluer et améliorer la performance de la chaîne de prise en charge de la chimiothérapie à domicile. En conclusion, cette thèse apporte une première contribution à la généralisation de la pratique de la chimiothérapie à domicile et au développement d’outils d’aide aux pilotages destinés à l’amélioration de sa réalisation / This thesis deals with chemotherapy at home which is the fruit of increasing cancer patients and successful development of home care services. We present in this thesis appropriate solutions to evaluate and improve management performance of chemotherapy at home network. The first part concerns the socioeconomic context of chemotherapy at home, as well as its legal and organizational constraints. The second part outlines specificities and related issues of chemotherapy at home based on a literature review. The third part focuses on chemotherapy at home process modeling depending on an important field work. A generic model of chemotherapy at home is abstracted, which is the basis of a chemotherapy at home practices classification that we proposed. An individual analysis and a comparative analysis of chemotherapy at home approaches are also proposed in this part. The fourth part presents different solutions that we developed to evaluate and improve the management performance of chemotherapy at home network. In conclusion, this thesis provides an initial contribution to promote chemotherapy at home practices and to develop management support tools for its implementation

O presente projeto de pesquisa tem como foco a atenção domiciliar e mais especificamente, o processo de desospitalização, isto é, o processo de alta hospitalar articulado à rede de atenção à saúde com o objetivo de viabilizar a continuidade do cuidado integral no domicílio, com enfoque em Cuidados Paliativos. Imprescindível para que se garanta o cuidado integral à pessoa, que a comunicação seja efetiva, entre os três atores principais: o paciente dependente de cuidado domiciliar juntamente com a família, no papel do cuidador principal; o Hospital que definiu o diagnóstico e tratamento; e a rede municipal de saúde, que seja através do SAD ou da Unidade Básica de Saúde/Saúde da Família (UBS/USF), se responsabilizará pelo acompanhamento e continuidade desse cuidado no domicílio. O objetivo do estudo é analisar as evidências disponíveis na literatura sobre o processo de alta do paciente em Cuidado Paliativo. Para alcançar o objetivo proposto, realizamos uma Revisão Integrativa (RI). A questão norteadora para a realização desta revisão integrativa foi: \"Quais são as evidências disponíveis na literatura sobre o planejamento da alta hospitalar, como garantia da continuidade do cuidado, a pacientes em cuidados paliativos?\" A busca de artigos foi realizada em julho/2016, nas bases de dados PubMed, LILACS e CINAHL, com os seguintes descritores controlados: home care services, Patiente Discharge, Summaries patient discharge, Continuity of patient care e Patient Care planning, Serviços de Assistência Domiciliar, Alta do paciente e Continuidade da Assistência ao Paciente, além de descritores não controlados (palavras-chave), sendo estes home care services, Patiente Discharge, Continuity of patient care, Serviços de Assistência Domiciliar, Alta do paciente e Continuidade da Assistência ao Paciente. A amostra foi composta de oito estudos primários, onde foi apresentada a importância do Cuidado Paliativo, o desejo dos pacientes terem sua terminalidade em casa e alguns métodos para que se alcance esse objetivo. Na Brasil, a população conta com sistema público de saúde estruturado a partir do direito à saúde como prerrogativa constitucional, mas ainda ocorrem dificuldades de acesso. A falta de integração entre os profissionais e serviços hospitalar e unidades básicas de saúde ou de saúde da família podem produzir resultados negativos. O cuidador é um elemento chave no processo de planejamento de alta hospitalar. A continuidade do cuidado tem grande relação com o preparo a ele ofertado e o acompanhamento e apoio das equipes técnicas responsáveis. À Enfermagem é atribuída a responsabilidade pelo preparo do cuidador. Além disso, a elaboração do plano de cuidados e o início da capacitação do cuidador deve ocorrer ainda durante a hospitalização. A necessidade de capacitação não se limita ao cuidador, mas também aos trabalhadores da atenção básica. A alta hospitalar é uma transição específica e prevê a continuidade dos cuidados em domicílio. Apresentamos uma síntese dos elementos norteadores do planejamento de alta encontramos / The present research project focuses on home care and, more specifically, the process of dehospitalization, that is, the process of hospital discharge articulated to the health care network with the objective of enabling the continuity of integral care at home, with focus In Palliative Care. Essential for guaranteeing comprehensive care to the person, that communication be effective, among the three main actors: the patient dependent on home care together with the family, in the role of the main caregiver; The Hospital that defined the diagnosis and treatment; And the municipal health network, through the SAD or the Basic Health / Family Health Unit (UBS / USF), will be responsible for the follow-up and continuity of this care at home. The objective of the study is to analyze the available evidence in the literature on the patient discharge process in Palliative Care. To achieve the proposed goal, we performed an Integrative Review (IR). The guiding question for the accomplishment of this integrative review was: \"What evidence is available in the literature on planning hospital discharge as a guarantee of continuity of care for patients in palliative care?\" The search for articles was conducted in July / 2016 , In the PubMed, LILACS and CINAHL databases, with the following controlled descriptors: home care services, Patient Discharge, Patient Discharge Summaries, Continuity of patient care and Patient Care planning, Home Care Services, Patient Discharge and Continuity of Care Patient, in addition to uncontrolled descriptors (keywords), being these home care services, Patient Discharge, Continuity of patient care, Home Care Services, Patient discharge and Continuity of Patient Care. The sample consisted of eight primary studies, where the importance of Palliative Care, the patients\' desire to have their terminality at home and some methods to achieve this goal were presented. In Brazil, the population has a public health system based on the right to health as a constitutional prerogative, but access difficulties still exist. The lack of integration between hospital professionals and services and basic health or family health units can produce negative results. The caregiver is a key element in the hospital discharge planning process. The continuity of the care has a great relation with the preparation offered to him and the accompaniment and support of the responsible technical teams. Nursing is assigned responsibility for preparing the caregiver. In addition, the preparation of the plan of care and the beginning of the training of the caregiver should occur even during hospitalization. The need for training is not limited to the caregiver, but also to primary care workers. Discharge is a specific transition and provides for continuity of care at home. We present a synthesis of the guiding elements of the high planning we found

Trata-se de um estudo exploratório-descritivo, de abordagem quantitativa, cujo objetivo foi avaliar a prática assistencial da intubação gástrica para nutrição enteral dos usuários em Programa de Assistência Domiciliar (PAD), no Hospital Universitário da Universidade de São Paulo. A população foi composta por 37 sujeitos admitidos no PAD, portadores de intubação gástrica para nutrição enteral. A coleta de dados ocorreu no período 15 de abril a 15 de agosto de 2010 por meio de dois formulários. Os dados foram analisados em função da estatística descritiva e inferencial e aplicados testes estatísticos com significância de 5%. Na caracterização dos usuários, constatou- se que 51,4% pertenciam ao sexo feminino e 67,6% apresentavam idade a 60 anos. Em relação ao diagnóstico principal, houve o predomínio de 67,6% dos portadores de doenças neurológicas e a média de permanência no PAD foi de 10,3 meses (dp+12,2). Quanto aos cuidadores, a maioria (89,2%) pertencia ao sexo feminino, e a média de idade foi de 50,6 anos (dp+13,4), 97,3% mantinham vínculo familiar com o usuário e 35,1% não completaram o ensino fundamental. No que diz respeito à via de intubação gástrica, 51,4% utilizaram a gastrostomia, o tipo de dieta predominante 51,4% foi a semi-artesanal. A sonda gástrica foi substituída 29 vezes e o tempo médio de permanência foi de 3,8 meses. Na classificação das extubações, considerando 100 dias, obteve- se a taxa de incidência geral de 1,08, sendo 0,26 de extubações planejadas e 0,82 de não planejadas. As principais circunstâncias envolvidas nas extubações foram: na planejada, a substituição eletiva da sonda; na não planejada, o rompimento do balão da sonda de gastrostomia, com diferença estatística significante (p=0,009). Na comparabilidade entre os grupos de usuários pediátrico e adulto/idoso, houve diferença estatística para o tempo de permanência no PAD e média de idade do cuidador (p=0,00). A taxa incidência de extubação não planejada, no grupo pediátrico, foi de 1,05 e no adulto/idoso de 0,73, não havendo diferença estatística significante (p=0,28). Conclusão: o perfil de usuários do PAD foi constituído, na sua maioria, por usuários idosos, do sexo feminino, tendo como diagnóstico de admissão as doenças neurológicas e com intubação gástrica via gastrostomia; o cuidador era do tipo informal, membro da família, representado pela figura feminina. No que tange às extubações gástricas mensuradas por meio dos indicadores de resultado e pela identificação das circunstâncias envolvidas, verificou-se que os achados permitiram conhecer a realidade dos portadores de intubação gástrica para aporte nutricional no programa, fornecendo subsídios para o estabelecimento de metas assistenciais e gerenciais para a melhoria contínua da qualidade e as reformulações necessárias dos processos de trabalho no âmbito da assistência domiciliar. / This is an exploratory-descriptive study, with a quantitative approach, aiming to evaluate health care practice of gastrointestinal intubation for enteral feeding for users of the Home Care Program (HCP), at the University Hospital of the University of São Paulo. The population consisted of 37 subjects enrolled in the HCP, with gastrointestinal intubation for enteral feeding. Data collection was performed by means of two forms and collected between April 15 to August 15, 2010. Data were analyzed according to descriptive and inferential statistics and statistical tests with significance of 5% were applied. In the characterization of users, 51.4% were female and 67.6% were aged 60 years. In relation to primary diagnosis, there was predominance of 67.6% of patients with neurological diseases and the mean stay in the HCP was 10.3 months (sd +12.2). Regarding caregivers, the majority (89.2%) was female, mean age of 50.6 years (sd +13.4), 97.3% had family ties with the user and 35.1% did not finish elementary school. Regarding the route of gastrointestinal intubation, 51.4% used the gastrostomy, the predominant type of diet was 51.4% semiartisan. The gastrostomy feeding tube was replaced 29 times and the mean time of stay was 3.8 months. In the classification of extubations, considering 100 days, we obtained the overall incidence rate of 1.08, of which 0.26 of planned extubations and 0.82 of unplanned. The main circumstances involved in extubations were : in the planned, elective replacement of the tube; in the unplanned, balloon rupture of the gastrostomy tube, with a statistically significant difference (p = 0.009). When comparing the pediatric with the adult / elderly group, no statistical difference regarding stay in HCP and mean age of the caregiver (p = 0.00) were observed. The incidence rate of unplanned extubation in the pediatric group was 1.05 and in the adult / elderly group was 0.73, with no statistically significant difference (p = 0.28). Conclusion: The user´s profile of HCP consisted mostly of elderly female patients, with an admission diagnosis of neurological diseases and gastrointestinal intubation via gastrostomy; the caregiver was a casual and family member represented by the female figure. Regarding gastrointestinal extubations measured through result indicators and by identifying the involved circumstances found that the findings helped to understand the reality of patients with gastrointestinal intubation for nutritional support in the program, providing subsidies to establish the assistance and managerial goals for the continuous improvement of quality and for the necessary changes in work processes in the home care area.

The aim of this study was to investigate unit managers views on staff continuity within municipal home care services to get a wider understanding regarding the organization’s work with staff continuity, which action dilemmas the unit managers encounter and how they handle these. The study was conducted by qualitative research through semi-structured interviews with six unit managers in one middle-sized municipality in Sweden. The results showed a diverseness in working methods regarding staff continuity between the home care services in the municipality. It was also concluded that the home care services are guided by goals and guidelines regarding staff continuity which the unit managers finds unclear and undeveloped. The conclusion highlights that the unit managers finds themselves in a position where the care users needs and requests of a staff continuity does not always match the conditions and regulations within the organization. Lastly the results showed that this position causes the unit managers to make priorities in the work for staff continuity. It can be concluded that the unit managers either finds themselves adjusting to the organizations conditions or regulations or they find solutions to meet the request and needs from the care users regarding staff continuity.