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1.
Palliat Med ; 36(2): 386-394, 2022 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-34927494

RESUMO

BACKGROUND: Collaboration between parents and professional care providers is an essential part of pediatric palliative care. As children are embedded in family systems and many of the patients are not able to communicate verbally, their parents are the primary interaction partners for palliative care providers. International standards for pediatric palliative care in Europe state that parents should be supported, acknowledged as the primary carers and involved as partners in all care and decisions. AIM: To find out through which care practices pediatric palliative care teams shape collaboration with parents in everyday care. DESIGN: Ethnographic method of participatory observations. Field notes were analyzed using thematic analysis. SETTING/PARTICIPANTS: Researchers accompanied three pediatric palliative care teams on home visits to eight different families caring for a child with life-limiting conditions. RESULTS: Care practices of palliative care teams were characterized by familiarity, a resource-oriented attitude, empowerment of parents, shared decision-making and support for parents. Palliative care teams not only provided palliative medical treatment for the children, but also developed a trusting care partnership with parents. The teams employed a sensitive and multifaceted communication style in their collaboration with parents. CONCLUSIONS: Care practices in pediatric palliative care require time, communication skills, and a high level of psychosocial competence, to develop a trusting, collaborative relationship with parents. This should be taken into consideration when establishing pediatric palliative care structures, preparing guidelines, training staff, and deciding upon appropriate remuneration.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Assistência Ambulatorial , Criança , Humanos , Pacientes Ambulatoriais , Pais
2.
Artigo em Alemão | MEDLINE | ID: mdl-35107588

RESUMO

BACKGROUND AND AIM: Children and adolescents with life-limiting conditions and complex symptoms are eligible for specialized outpatient palliative care (SOPC). The SOPC guideline in Germany solely states: "The special needs of children and adolescents shall be considered." This study aims to identify these special needs and to develop recommendations for a revision of the SOPC guideline. METHODS: We used a sequential mixed-methods design including surveys, qualitative interviews, participant observations, and focus group discussions with relatives, patients, and team members of the SOPC in Hesse, Germany. Furthermore, we analyzed documentation data of the Hessian SOPC teams. RESULTS: Children and adolescents in SOPC suffer from complex and often rare diseases. They need elaborate palliative care delivered by a team with pediatric expertise. SOPC must include the whole family and coordinate healthcare providers that are stretched regionally. Furthermore, patients and relatives need elaborate psychosocial care. SOPC for children and adolescents is less well-known than SOPC for adults, and access for families is often difficult. There is a healthcare gap for children and adolescents with life-limiting diseases who need palliative care at home but not of the intensive kind provided by SOPC. CONCLUSIONS: SOPC for children, adolescents, and adults who have been diseased since their childhood and adolescence must be delivered within an independent structure, including a reimbursement scheme that takes the special care efforts for this patient group into consideration.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Adolescente , Adulto , Assistência Ambulatorial , Criança , Alemanha , Humanos , Pacientes Ambulatoriais , Cuidados Paliativos/psicologia
3.
Gesundheitswesen ; 81(6): 492-497, 2019 Jun.
Artigo em Alemão | MEDLINE | ID: mdl-28697527

RESUMO

The German healthcare system is struggling with fragmentation of care in the face of an increasing shortage of general practitioners and allied health professionals, and the time-demanding healthcare needs of an aging, multimorbid patient population. Innovative interprofessional, intersectoral models of care are required to ensure adequate access to primary care across a variety of rural and urban settings into the foreseeable future. A team approach to care of the complex multimorbid patient population appears particularly suitable in attracting and retaining the next generation of healthcare professionals, including general practitioners. In 2014, the German Advisory Council on the Assessment of Developments in the Health Care System highlighted the importance of regional, integrated care with community-based primary care centres at its core, providing comprehensive, population-based, patient-centred primary care with adequate access to general practitioners for a given geographical area. Such centres exist already in Ontario, Canada; within Family Health Teams (FHT), family physicians work hand-in-hand with pharmacists, nurses, nurse practitioners, social workers, and other allied health professionals. In this article, the Canadian model of FHT will be introduced and we will discuss which components could be adapted to suit the German primary care system.


Assuntos
Saúde da Família , Atenção Primária à Saúde , Atenção à Saúde , Alemanha , Humanos , Ontário , Equipe de Assistência ao Paciente
4.
Qual Life Res ; 27(3): 775-782, 2018 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-29063350

RESUMO

PURPOSE: Aim of this exploratory study was to investigate whether a retrospective assessment of oral health-related quality of life (OHRQoL) using the Oral Health Impact Profile (OHIP) is susceptible to bias such as implicit theory of change and cognitive dissonance. METHODS: In this prospective clinical study, a sample of 126 adult patients (age 17-83 years, 49% women) requiring prosthodontic treatment was consecutively recruited. The OHRQoL was assessed using the 49-item OHIP at baseline and at follow-up. Additionally, patients were asked at follow-up to retrospectively rate their oral health status at baseline (retrospective pretest or then-test) and the change in oral health status using a global transition question. Furthermore, patients' ratings of overall oral health and general health were used as validity criteria for the OHRQoL assessments. Response shift was calculated as the difference between the initial and retrospective baseline assessments. RESULTS: Baseline and retrospective pretest did not differ substantially in terms of internal consistency and convergent validity. Response shift was more pronounced when patients perceived a large change in OHRQoL during treatment. Retrospective pretests were more highly correlated with the baseline than with the follow-up assessment. CONCLUSION: Findings suggest that retrospective assessments of OHRQoL using the OHIP-49 are susceptible to bias. Cognitive dissonance is more likely to appear as a source of bias than implicit theory of change.


Assuntos
Saúde Bucal/normas , Qualidade de Vida/psicologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Viés , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Inquéritos e Questionários , Adulto Jovem
5.
BMC Palliat Care ; 17(1): 14, 2018 Jan 05.
Artigo em Inglês | MEDLINE | ID: mdl-29304799

RESUMO

BACKGROUND: In 2007, the European Association of Palliative Care (EAPC) provided a comprehensive set of recommendations and standards for the provision of adequate pediatric palliative care. A number of studies have shown deficits in pediatric palliative care compared to EAPC standards. In Germany, pediatric palliative care patients can be referred to specialized outpatient palliative care (SOPC) services, which are known to enhance quality of life, e.g. by avoiding hospitalization. However, current regulations for the provision of SOPC in Germany do not account for the different circumstances and needs of children and their families compared to adult palliative care patients. The "Evaluation of specialized outpatient palliative care (SOPC) in the German state of Hesse (ELSAH)" study aims to perform a needs assessment for pediatric patients (children, adolescents and young adults) receiving SOPC. This paper presents the study protocol for this assessment (work package II). METHODS/DESIGN: The study uses a sequential mixed-methods study design with a focus on qualitative research. Data collection from professional and family caregivers and, as far as possible, pediatric patients, will involve both a written questionnaire based on European recommendations for pediatric palliative care, and semi-structured interviews. Additionally, professional caregivers will take part in focus group discussions and participatory observations. Interviews and focus groups will be tape- or video-recorded, transcribed verbatim and analyzed in accordance with the principles of grounded theory (interviews) and content analysis (focus groups). A structured field note template will be used to record notes taken during the participatory observations. Statistical Package for Social Sciences (SPSS, version 22 or higher) will be used for descriptive statistical analyses. The qualitative data analyses will be software-assisted by MAXQDA (version 12 or higher). DISCUSSION: This study will provide important information on what matters most to family caregivers and pediatric patients receiving SOPC. The results will add valuable knowledge to the criteria that distinguish SOPC for pediatric from SOPC for adult patients, and will provide an indication of how the German SOPC rule of procedure can be optimized to satisfy the special needs of pediatric patients. TRIAL REGISTRATION: Internet Portal of the German Clinical Trials Register ( www.germanctr.de , DRKS-ID: DRKS00012431).


Assuntos
Protocolos Clínicos/normas , Cuidados Paliativos/métodos , Pediatria/métodos , Adolescente , Adulto , Assistência Ambulatorial/métodos , Assistência Ambulatorial/tendências , Criança , Feminino , Grupos Focais , Alemanha , Humanos , Masculino , Pediatria/tendências , Pesquisa Qualitativa , Inquéritos e Questionários
6.
BMC Palliat Care ; 17(1): 111, 2018 Oct 02.
Artigo em Inglês | MEDLINE | ID: mdl-30285709

RESUMO

BACKGROUND: In Germany, patients suffering from life-limiting conditions are eligible for specialized outpatient palliative care (SOPC). Evaluation of the quality of this service lacks currently integration of patient-relevant outcomes. There is also no scientific consensus how to prove quality of care in the special context of SOPC adequately. Existing quality reports are primarily based on descriptive structural data which do not allow for estimation of process quality or result quality. The ELSAH study ('Evaluation of Specialized Outpatient Palliative Care in the German state of Hesse') aims to choose - or, if necessary, to adopt - to evaluate and to implement a suit of measures to assess, evaluate and monitor the quality of specialized, home-based palliative care. METHODS: All 22 SOPC teams providing their services in the state of Hesse, Germany, participate in the ELSAH study. The study is divided in two phases: a preparation phase and a main study phase. Based on the findings of the preparation phase we have chosen a preliminary set of instruments including the Integrated Palliative Outcome Scale, Views on Care, Zarit Burden Interview, Phase of Illness, Goal Attainment Scaling, Eastern Cooperative Oncology Group Performance Status, Consumer Quality Indices Palliative Care and Sense of Security in Care. During the main study phase, we will use a mixed-methods approach to evaluate the instruments' psychometric properties (reliability, validity, feasibility and practicability), to identify barriers, facilitators and limitations of their routine use and to explore how their use affects the care within the SOPC setting. DISCUSSION: At the end of this study, an outcome- and patient-centered, validated measurement approach should be provided, adapted for standardized evaluations in SOPC across patient groups, palliative care services and regions nationwide. The standardized application of instruments should allow for making valid statements and comparisons of health care quality in SOPC based on process- and outcome-evaluation rather than relying on structural data only. Moreover, the instruments might directly influence the care of patients in palliative situations. TRIAL REGISTRATION: German Clinical Trials Register (DRKS-ID: DRKS00012421 ).


Assuntos
Assistência Ambulatorial , Estado Terminal , Cuidados Paliativos , Psicometria , Qualidade da Assistência à Saúde , Adulto , Assistência Ambulatorial/métodos , Assistência Ambulatorial/organização & administração , Assistência Ambulatorial/normas , Atitude do Pessoal de Saúde , Estado Terminal/psicologia , Estado Terminal/terapia , Atenção à Saúde/métodos , Atenção à Saúde/organização & administração , Feminino , Alemanha , Humanos , Masculino , Cuidados Paliativos/métodos , Cuidados Paliativos/psicologia , Cuidados Paliativos/normas , Psicometria/métodos , Psicometria/normas , Qualidade da Assistência à Saúde/organização & administração , Qualidade da Assistência à Saúde/normas , Reprodutibilidade dos Testes
7.
Ann Intern Med ; 164(5): 323-30, 2016 Mar 01.
Artigo em Inglês | MEDLINE | ID: mdl-26833209

RESUMO

BACKGROUND: Patients with multiple chronic conditions are at high risk for potentially avoidable hospitalizations, which may be reduced by care coordination and self-management support. Medical assistants are an increasingly available resource for patient care in primary care practices. OBJECTIVE: To determine whether protocol-based care management delivered by medical assistants improves care in patients at high risk for future hospitalization in primary care. DESIGN: Two-year cluster randomized clinical trial. (Current Controlled Trials: ISRCTN56104508). SETTING: 115 primary care practices in Germany. PATIENTS: 2076 patients with type 2 diabetes, chronic obstructive pulmonary disease, or chronic heart failure and a likelihood of hospitalization in the upper quartile of the population, as predicted by an analysis of insurance data. INTERVENTION: Protocol-based care management, including structured assessment, action planning, and monitoring delivered by medical assistants, compared with usual care. MEASUREMENTS: All-cause hospitalizations at 12 months (primary outcome) and quality-of-life scores (12-Item Short Form Health Survey [SF-12] and EuroQol instrument [EQ-5D]). RESULTS: Included patients had an average of 4 co-occurring chronic conditions. All-cause hospitalizations did not differ between groups at 12 months (risk ratio [RR], 1.01 [95% CI, 0.87 to 1.18]) and 24 months (RR, 0.98 [CI, 0.85 to 1.12]). Quality of life (differences, 1.16 [CI, 0.24 to 2.08] on SF-12 physical component and 1.68 [CI, 0.60 to 2.77] on SF-12 mental component) and general health (difference on EQ-5D, 0.03 [CI, 0.00 to 0.05]) improved significantly at 24 months. Intervention costs totaled $10 per patient per month. LIMITATION: Small number of primary care practices and low intensity of intervention. CONCLUSION: This low-intensity intervention did not reduce all-cause hospitalizations but showed positive effects on quality of life at reasonable costs in high-risk multimorbid patients. PRIMARY FUNDING SOURCE: AOK Baden-Württemberg and AOK Bundesverband.


Assuntos
Diabetes Mellitus Tipo 2/terapia , Insuficiência Cardíaca/terapia , Assistentes Médicos/organização & administração , Atenção Primária à Saúde/organização & administração , Doença Pulmonar Obstrutiva Crônica/terapia , Idoso , Doença Crônica , Custos e Análise de Custo , Feminino , Alemanha , Hospitalização/estatística & dados numéricos , Humanos , Masculino , Equipe de Assistência ao Paciente/organização & administração , Assistentes Médicos/economia , Atenção Primária à Saúde/economia , Atenção Primária à Saúde/normas , Qualidade da Assistência à Saúde , Qualidade de Vida , Fatores de Risco , Autocuidado
8.
Artigo em Alemão | MEDLINE | ID: mdl-29063154

RESUMO

BACKGROUND: Health service planning that takes into account as far as possible the regional needs and regional discrepancies is a controversial health issue in Germany. OBJECTIVES: In a pilot scheme, we tested a planning process for regional healthcare services, based on the example of dementia care. The aim of this article is to present the strengths and limitations of this planning process. MATERIALS AND METHODS: We developed an indicator set for dementia care based on routine regional data obtained from two German statutory health insurance companies. Additionally, primary data based on a questionnaire sent to all GPs in the area were evaluated. These data were expanded through the addition of official socio-demographic population data. Procedures and evaluation strategies, discussion of the results and the derivation of planning measures followed, in close agreement with a group of local experts. RESULTS: Few epidemiological data on regional variations in health care planning are publicly available. Secondary data from statutory health insurance companies can be assessed to support the estimation of regional health care needs, but interpretation is difficult. The use of surveys to collect primary data, and the assessment of results by the local health board may facilitate interpretation and may contribute towards more valid statements regarding regional health planning. CONCLUSIONS: Despite the limited availability of data and the considerable efforts involved in data analysis, the project demonstrates how needs-based health service planning can be carried out in a small region, taking into account the increasing demands of the local health care providers and the special local features.


Assuntos
Demência/epidemiologia , Demência/terapia , Programas Nacionais de Saúde/organização & administração , Regionalização da Saúde/organização & administração , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Demência/classificação , Demência/diagnóstico , Avaliação da Deficiência , Feminino , Alemanha , Necessidades e Demandas de Serviços de Saúde/organização & administração , Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Pesquisa sobre Serviços de Saúde , Humanos , Incidência , Masculino , Projetos Piloto , Programas Médicos Regionais/organização & administração
9.
BMC Health Serv Res ; 13: 117, 2013 Mar 26.
Artigo em Inglês | MEDLINE | ID: mdl-23530744

RESUMO

BACKGROUND: Self-management support is a key component of effective chronic care management, yet in practice appears to be the least implemented and most challenging. This study explores whether and how self-management support is integrated into chronic care approaches in 13 European countries. In addition, it investigates the level of and barriers to implementation of support strategies in health care practice. METHODS: We conducted a review among the 13 participating countries, based on a common data template informed by the Chronic Care Model. Key informants presented a sample of representative chronic care approaches and related self-management support strategies. The cross-country review was complemented by a Dutch case study of health professionals' views on the implementation of self-management support in practice. RESULTS: Self-management support for chronically ill patients remains relatively underdeveloped in Europe. Similarities between countries exist mostly in involved providers (nurses) and settings (primary care). Differences prevail in mode and format of support, and materials used. Support activities focus primarily on patients' medical and behavioral management, and less on emotional management. According to Dutch providers, self-management support is not (yet) an integral part of daily practice; implementation is hampered by barriers related to, among others, funding, IT and medical culture. CONCLUSIONS: Although collaborative care for chronic conditions is becoming more important in European health systems, adequate self-management support for patients with chronic disease is far from accomplished in most countries. There is a need for better understanding of how we can encourage both patients and health care providers to engage in productive interactions in daily chronic care practice, which can improve health and social outcomes.


Assuntos
Doença Crônica/terapia , Autocuidado , Apoio Social , Europa (Continente) , Humanos , Modelos Teóricos , Estudos de Casos Organizacionais , Pesquisa Qualitativa
10.
BMC Health Serv Res ; 12: 8, 2012 Jan 10.
Artigo em Inglês | MEDLINE | ID: mdl-22233930

RESUMO

BACKGROUND: To improve and assess the effectiveness of disease management programs (DMPs), it is critical to understand how many people drop out of disease management programs and why. METHODS: We used routine data provided by a statutory health insurance fund from the regions North Rhine, North Wurttemberg and Hesse. As part of the German DMP for type 2 diabetes, the insurance fund received regular documentation of all members participating in the program. We followed 10,989 patients who enrolled in the DMP between July 2004 and December 2005 until the end of 2007 to study how many patients dropped out of the program. Dropout was defined based on the discontinuation of program documentation on a particular patient, excluding situations in which the patient died or left the insurance fund. Predictors of dropout, assessed at the time of program enrolment, were explored using logistic regression analysis. RESULTS: 5.5% of the patients dropped out of the disease management program within the observation period. Predictors of dropout at the time of enrolment were: region; retirement status; the number of secondary diseases; presence of a disabling secondary disease; doctor's recommendations to stop smoking or to seek nutritional counselling; and the completion and outcome of the routine foot and eye exams. Different trends of dropout were observed among retired and employed patients: retired patients of old age, who possibly drop out of the program due to other health care priorities and employed people of younger age who have not yet developed many secondary diseases, but were recommended to change their lifestyle. CONCLUSIONS: Overall, dropout rates for the German disease management programs for type 2 diabetes were low compared to other studies. Factors assessed at the time of program enrolment were predictive of later dropout and should be further studied to provide information for future program improvements.


Assuntos
Diabetes Mellitus Tipo 2/terapia , Gerenciamento Clínico , Programas Nacionais de Saúde/estatística & dados numéricos , Pacientes Desistentes do Tratamento/estatística & dados numéricos , Distribuição por Idade , Comorbidade , Diabetes Mellitus Tipo 2/complicações , Diabetes Mellitus Tipo 2/epidemiologia , Feminino , Alemanha/epidemiologia , Acessibilidade aos Serviços de Saúde , Humanos , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Avaliação de Programas e Projetos de Saúde , Estudos Retrospectivos , Medição de Risco , Distribuição por Sexo
11.
BMC Fam Pract ; 13: 91, 2012 Sep 06.
Artigo em Inglês | MEDLINE | ID: mdl-22953792

RESUMO

BACKGROUND: Patients with chronic kidney disease (CKD) are at increased risk for inappropriate or potentially harmful prescribing. The aim of this study was to examine whether a multifaceted intervention including the use of a software programme for the estimation of creatinine clearance and recommendation of individual dosage requirements may improve correct dosage adjustment of relevant medications for patients with CKD in primary care. METHODS: A cluster-randomized controlled trial was conducted between January and December 2007 in small primary care practices in Germany. Practices were randomly allocated to intervention or control groups. In each practice, we included patients with known CKD and elderly patients (≥70 years) suffering from hypertension. The practices in the intervention group received interactive training and were provided a software programme to assist with individual dose adjustment. The control group performed usual care. Data were collected at baseline and at 6 months. The outcome measures, analyzed across individual patients, included prescriptions exceeding recommended maximum daily doses, with the primary outcome being prescriptions exceeding recommended standard daily doses by more than 30%. RESULTS: Data from 44 general practitioners and 404 patients are included. The intervention was effective in reducing prescriptions exceeding the maximum daily dose per patients, with a trend in reducing prescriptions exceeding the standard daily dose by more than 30%. CONCLUSIONS: A multifaceted intervention including the use of a software program effectively reduced inappropriately high doses of renally excreted medications in patients with CKD in the setting of small primary care practices. TRIAL REGISTRATION: Current Controlled Trials ISRCTN02900734.


Assuntos
Tomada de Decisões Assistida por Computador , Medicina Geral/educação , Medicamentos sob Prescrição/administração & dosagem , Atenção Primária à Saúde/métodos , Insuficiência Renal Crônica/tratamento farmacológico , Adulto , Idoso , Idoso de 80 Anos ou mais , Cálculos da Dosagem de Medicamento , Quimioterapia Assistida por Computador/métodos , Feminino , Alemanha , Humanos , Hipertensão/complicações , Masculino , Pessoa de Meia-Idade , Avaliação de Resultados em Cuidados de Saúde
12.
Z Evid Fortbild Qual Gesundhwes ; 172: 54-60, 2022 Aug.
Artigo em Alemão | MEDLINE | ID: mdl-35717310

RESUMO

BACKGROUND: In Germany, people with life-limiting conditions and complex symptoms are eligible for specialized outpatient palliative care (SOPC). Requirements, delivery and goals of SOPC have been laid down by the Federal Joint Committee in a nationwide guideline. The guideline emphasizes the need to consider the special needs of children and adolescents with life-limiting conditions. A specification of these needs has so far been missing. The focus group discussion presented here aimed at investigating similarities and differences between the specialized outpatient palliative care of adults (SOPC for adults) on the one hand, and children and adolescents (SOPPC) on the other hand, from the perspective of health care professionals in order to further define specifics of SOPPC. METHOD: In three focus group discussions a total of 11 nursing and 8 medical professionals from SOPC for adults and SOPPC engaged in face-to-face discussions on the similarities and differences of both care forms. Discussions were designed openly and stimulated with three guiding questions only. Focus group discussions were audio-recorded, transcribed verbatim and analyzed by thematic analysis supported by the software MAXQDA. RESULTS: Within the following six themes, similarities as well as key differences between SOPC and SOPPC were identified: the participants discussed diseases, coverage area and locations, therapy goals, the psychosocial care situation, the role of relatives and end-of-life care. From the participants' perspective different underlying diseases constitute a main difference that causes further differences in the expertise required. Furthermore, SOPC for adults and SOPPC differ in the dimension of areas covered by one team, the number of patients per team and the reasons for SOPC visits. Differences in terminal care and the mourning process within the team became evident. Some similarities existed regarding goal-setting, psychosocial care and the role of relatives, but concrete patterns and the importance of these aspects differed because a particularly complex and emotional communication is required when a child is dying. CONCLUSION: From the perspective of health care professionals, SOPC for adults and SOPPC differ with regard to underlying diseases as well as care patterns such as collaboration with relatives and their need for psychosocial support. Therefore, the care for children, adolescents and young adults with life-limiting conditions and pediatric diseases all over Germany should be delivered within the frame of an independent care structure by teams whose members possess specific pediatric expertise.


Assuntos
Pacientes Ambulatoriais , Cuidados Paliativos , Adolescente , Criança , Grupos Focais , Alemanha , Pessoal de Saúde , Humanos , Cuidados Paliativos/psicologia , Pesquisa Qualitativa , Adulto Jovem
13.
BMJ Support Palliat Care ; 12(e5): e664-e670, 2022 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-33402383

RESUMO

OBJECTIVE: In Germany, children with life-limiting conditions and complex symptoms are eligible for specialised outpatient palliative care (SOPC). In the federal state of Hesse, SOPC for children (SOPPC) is delivered by teams with paediatric expertise. While burdened by the life-limiting condition of their child, parents must also fulfill their roles as main care providers and decision makers. Collaboration between parents and SOPPC teams is important, as the intermittent care and uncertainty it entails often lasts for several months or years. We explored parents' experiences and their demands of collaboration with SOPPC teams. METHODS: We conducted nine narrative interviews with 13 parents of children and adolescents with life-limiting conditions and used a grounded theory approach to analyse interview data. RESULTS: Parents stressed the importance of paediatric expertise, honesty, psychosocial support, an individualised approach, experience of self-efficacy and the need to be recognised as experts for their children. The narrative interviews showed that collaboration between parents and SOPPC teams was characterised by parents' need for specialised professional assistance and their simultaneous empowerment by SOPPC teams. CONCLUSIONS: Parents' perceptions of what good collaboration with SOPPC teams entails are manifold. To meet these complex needs, SOPPC requires time and specialised expertise.


Assuntos
Pacientes Ambulatoriais , Cuidados Paliativos , Adolescente , Criança , Humanos , Cuidados Paliativos/psicologia , Pais/psicologia , Teoria Fundamentada , Alemanha , Pesquisa Qualitativa
14.
J Palliat Med ; 23(4): 466-474, 2020 04.
Artigo em Inglês | MEDLINE | ID: mdl-31730390

RESUMO

Background: Guidelines on pediatric palliative care recommend to provide care for children and adolescents with life-limiting conditions at home. Since 2007, in Germany, palliative home care can be provided by specialized outpatient palliative care teams. However, teams with specific expertise for children are not available all over the country. Families without this support need to use the hospital to get specialists' assistance. Objective: To explore how parents of children and adolescents with life-limiting conditions think about the hospital as place of care. Design: We conducted narrative interviews with parents and analyzed these by using a grounded theory approach. Setting/Subjects: We interviewed 13 parents (4 fathers and 9 mothers) of 9 children with life-limiting conditions receiving or having received pediatric specialized outpatient palliative care (SOPPC) in Germany. Results: Parents reported feelings of vulnerability, heteronomy, and disablement associated with hospital care and were afraid that their children's needs were not adequately addressed. These perceptions resulted from hospitals' standardized care structures and over- and undertreatment, a lack of continuity of care, hospital pathogens, a lack of a palliative mindset, insensitive hospital staff, the exclusion of parents from the treatment and parental care of their children, the hospital stay as a permanent state of emergency, and a waste of limited life time. Conclusion: Pediatric hospital staff needs training in identifying and responding to palliative care needs. SOPPC structures should be expanded all over Germany to meet the needs of families of children with life-limiting conditions.


Assuntos
Teoria Fundamentada , Cuidados Paliativos , Pais , Adolescente , Criança , Alemanha , Hospitalização/estatística & dados numéricos , Humanos , Entrevistas como Assunto , Cuidados Paliativos/normas , Pesquisa Qualitativa
15.
Ophthalmologe ; 116(7): 647-655, 2019 Jul.
Artigo em Alemão | MEDLINE | ID: mdl-30349941

RESUMO

BACKGROUND: Physicians are highly vulnerable to work-related stress; however, little is known about the workload of ophthalmologists. MATERIAL AND METHODS: In March 2017 a cross-sectional and paper-based survey of all practice-based ophthalmologists in the federal state of Thuringia was conducted. Additionally, data from 2016 and 2009 using physician fee schedule datasets provided by the Thuringian Association of Statutory Health Insurance Physicians were analyzed. RESULTS: The response rate was 27% (n = 42 ophthalmologists) of which 95% (n = 40) exceeded the effort-reward cut-off value (>1) indicating a high level of work stress. The overall number of treatment cases did not show a statistically significant difference between 2016 and 2009 (n = 118 ophthalmologists, p = 0.412). In contrast, the number of treatment cases of patients with type 2 diabetes mellitus and essential (primary) hypertension was statistically significantly higher in 2016 compared to 2009 (n = 118 ophthalmologists, p < 0.05). CONCLUSION: Almost all respondents reported a high level of work stress and this was reflected in the number of treatment cases of patients with type 2 diabetes mellitus and essential hypertension, which was statistically significantly higher in 2016 than in 2009. The results suggest that working conditions should be adapted to meet the needs of chronically ill patients and reduce physicians' workload at the same time.


Assuntos
Diabetes Mellitus Tipo 2 , Estresse Ocupacional , Oftalmologistas , Estudos Transversais , Humanos , Prática Privada , Inquéritos e Questionários , Carga de Trabalho
16.
Z Evid Fortbild Qual Gesundhwes ; 131-132: 53-59, 2018 04.
Artigo em Alemão | MEDLINE | ID: mdl-29486975

RESUMO

INTRODUCTION: The combination of an ageing population and unequal distribution of healthcare capacity between rural and urban regions requires the development of innovative healthcare models, especially in rural areas, thus increasing the need to involve community representatives. The aim of this study was to ascertain the need for support and advice among municipalities and family doctors planning and implementing regional projects to ensure the provision of healthcare, and to develop a support and consultancy service on that basis. METHODS: Using semi-structured telephone interviews, 16 local representatives of the target groups (representatives from rural districts, mayors of rural municipalities and communities, doctors in private practice) were asked to identify the kind of support and advice they needed. The interviews were evaluated using the framework approach, a form of qualitative content analysis, and the results used to develop modules of a support and consultancy service. We discussed and finalized the concept during several workshops involving different representatives of the target groups (another 36 general practitioners, 19 mayors and representatives from rural districts). RESULTS: After taking into account the expressed need for advice and support, the developed consultancy service included the following modules: local situation/needs analysis, financial support options (e. g., grant application), concept/project development (including presentation of best practice examples), networks, assessment and evaluation, junior staff recruitment and introduction to other experts (for legal or IT-related advice, mediation, etc.). DISCUSSION: The study showed that local representatives have a substantial need for advice and support for which no nationwide consultancy service is yet available. Future practice tests should establish the extent to which local participants and projects can benefit from the consultancy service we have developed.


Assuntos
Atenção à Saúde , Encaminhamento e Consulta/organização & administração , Serviços de Saúde Rural , Envelhecimento , Alemanha , Necessidades e Demandas de Serviços de Saúde , Humanos , Serviços de Saúde Rural/organização & administração , População Rural
17.
Z Evid Fortbild Qual Gesundhwes ; 115-116: 49-55, 2016 Oct.
Artigo em Alemão | MEDLINE | ID: mdl-27837959

RESUMO

INTRODUCTION: Safeguarding country-wide health care in Germany requires innovative ideas: a shortage of skilled staff among medical professionals and in long-term care on the one hand contrasts with an increasing number of multi-morbid elderly patients on the other hand. In the "Innovative Health Care Models" project sponsored by the Robert Bosch Foundation a nationwide status review and systematization of innovative approaches to health care was conducted, along with an analysis of the factors that promote or hinder the implementation of a health care model, and a study of the conditions that must be satisfied if successful concepts are to be transferred to other regions. METHODS: After identifying innovative and successfully implemented health care models, data on success factors and barriers for implementation as well as data on conditions of their transferability to other regions were collected during structured telephone interviews and entered into a specifically developed database. Content analysis was used to qualitatively evaluate the interviews. RESULTS: Interviews with 65 representatives of successfully implemented models with differing organizational structures and priorities were conducted and evaluated. Success factors and barriers were most obvious in the fields of leadership, readiness to participate, relational aspects, personality traits, cooperation and communication, resources and organizational and structural factors. DISCUSSION: Various regionally linked health care concepts already exist throughout Germany. The barriers, success factors and conditions influencing the transferability of a model to other regions are largely independent of the type of organization. The success of a model is determined by adequate personal and financial resources, sound organizational structures and external support from political and funding bodies.


Assuntos
Atenção à Saúde/normas , Qualidade da Assistência à Saúde , Comunicação , Alemanha , Humanos , Liderança , Assistência de Longa Duração
18.
Health Serv Res ; 51(5): 1960-80, 2016 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-26841379

RESUMO

OBJECTIVE: To present a case study on how to compare various matching methods applying different measures of balance and to point out some pitfalls involved in relying on such measures. DATA SOURCES: Administrative claims data from a German statutory health insurance fund covering the years 2004-2008. STUDY DESIGN: We applied three different covariance balance diagnostics to a choice of 12 different matching methods used to evaluate the effectiveness of the German disease management program for type 2 diabetes (DMPDM2). We further compared the effect estimates resulting from applying these different matching techniques in the evaluation of the DMPDM2. PRINCIPAL FINDINGS: The choice of balance measure leads to different results on the performance of the applied matching methods. Exact matching methods performed well across all measures of balance, but resulted in the exclusion of many observations, leading to a change of the baseline characteristics of the study sample and also the effect estimate of the DMPDM2. All PS-based methods showed similar effect estimates. Applying a higher matching ratio and using a larger variable set generally resulted in better balance. Using a generalized boosted instead of a logistic regression model showed slightly better performance for balance diagnostics taking into account imbalances at higher moments. CONCLUSION: Best practice should include the application of several matching methods and thorough balance diagnostics. Applying matching techniques can provide a useful preprocessing step to reveal areas of the data that lack common support. The use of different balance diagnostics can be helpful for the interpretation of different effect estimates found with different matching methods.


Assuntos
Diabetes Mellitus Tipo 2/terapia , Gerenciamento Clínico , Seguro Saúde/organização & administração , Modelos Estatísticos , Demandas Administrativas em Assistência à Saúde , Estudos de Casos e Controles , Doença Crônica , Pesquisa Comparativa da Efetividade , Alemanha , Humanos , Estudos de Casos Organizacionais , Avaliação de Resultados em Cuidados de Saúde/métodos , Pontuação de Propensão , Medição de Risco
19.
BMJ Open ; 6(7): e011613, 2016 07 25.
Artigo em Inglês | MEDLINE | ID: mdl-27456328

RESUMO

OBJECTIVE: To improve medication appropriateness and adherence in elderly patients with multimorbidity, we developed a complex intervention involving general practitioners (GPs) and their healthcare assistants (HCA). In accordance with the Medical Research Council guidance on developing and evaluating complex interventions, we prepared for the main study by testing the feasibility of the intervention and study design in a cluster randomised pilot study. SETTING: 20 general practices in Hesse, Germany. PARTICIPANTS: 100 cognitively intact patients ≥65 years with ≥3 chronic conditions, ≥5 chronic prescriptions and capable of participating in telephone interviews; 94 patients completed the study. INTERVENTION: The HCA conducted a checklist-based interview with patients on medication-related problems and reconciled their medications. Assisted by a computerised decision-support system (CDSS), the GPs discussed medication intake with patients and adjusted their medication regimens. The control group continued with usual care. OUTCOME MEASURES: Feasibility of the intervention and required time were assessed for GPs, HCAs and patients using mixed methods (questionnaires, interviews and case vignettes after completion of the study). The feasibility of the study was assessed concerning success of achieving recruitment targets, balancing cluster sizes and minimising drop-out rates. Exploratory outcomes included the medication appropriateness index (MAI), quality of life, functional status and adherence-related measures. MAI was evaluated blinded to group assignment, and intra-rater/inter-rater reliability was assessed for a subsample of prescriptions. RESULTS: 10 practices were randomised and analysed per group. GPs/HCAs were satisfied with the interventions despite the time required (35/45 min/patient). In case vignettes, GPs/HCAs needed help using the CDSS. The study made no patients feel uneasy. Intra-rater/inter-rater reliability for MAI was excellent. Inclusion criteria were challenging and potentially inadequate, and should therefore be adjusted. Outcome measures on pain, functionality and self-reported adherence were unfeasible due to frequent missing values, an incorrect manual or potentially invalid results. CONCLUSIONS: Intervention and trial design were feasible. The pilot study revealed important limitations that influenced the design and conduct of the main study, thus highlighting the value of piloting complex interventions. TRIAL REGISTRATION NUMBER: ISRCTN99691973; Results.


Assuntos
Doença Crônica/epidemiologia , Sistemas de Apoio a Decisões Clínicas , Medicina Geral , Clínicos Gerais/estatística & dados numéricos , Reconciliação de Medicamentos , Polimedicação , Adulto , Idoso , Idoso de 80 Anos ou mais , Lista de Checagem , Doença Crônica/tratamento farmacológico , Sistemas de Apoio a Decisões Clínicas/estatística & dados numéricos , Sistemas de Apoio a Decisões Clínicas/tendências , Estudos de Viabilidade , Feminino , Alemanha/epidemiologia , Humanos , Masculino , Reconciliação de Medicamentos/métodos , Multimorbidade , Avaliação de Resultados em Cuidados de Saúde , Participação do Paciente , Relações Médico-Paciente , Projetos Piloto , Avaliação de Programas e Projetos de Saúde , Reprodutibilidade dos Testes , Inquéritos e Questionários
20.
Health Aff (Millwood) ; 32(4): 797-806, 2013 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-23514777

RESUMO

The patient-centered medical home is a US model for comprehensive care. This model features a personal physician or registered nurse who is augmented by a proactive team and information technology. Such a model could prove useful for advanced European systems as they strive to improve primary care, particularly for chronically ill patients. We surveyed 6,428 chronically ill patients and 152 primary care providers in five European countries to assess aspects of the patient-centered medical home. Although most patients reported that they had a personal physician and no problems in contacting the practice after hours, for example, other aspects of the patient-centered medical home, such as provision of written self-management support to patients, were not as widespread. We conclude that despite strong organizational structures, European primary care systems need additional efforts to recognize chronically ill patients as partners in care and can embrace patient-centered medical homes to improve care for European patients.


Assuntos
Assistência Centrada no Paciente/métodos , Atenção Primária à Saúde/métodos , Qualidade da Assistência à Saúde/organização & administração , Atitude do Pessoal de Saúde , Bélgica , Doença Crônica/terapia , Estudos Transversais , Dinamarca , Alemanha , Pesquisas sobre Atenção à Saúde , Humanos , Países Baixos , Satisfação do Paciente , Assistência Centrada no Paciente/organização & administração , Assistência Centrada no Paciente/normas , Atenção Primária à Saúde/organização & administração , Atenção Primária à Saúde/normas , Melhoria de Qualidade/organização & administração , Qualidade da Assistência à Saúde/normas , Reino Unido
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