Improvement and implementation of a national individual care plan in paediatric palliative care: a study protocol

INTRODUCTION: Paediatric palliative care (PPC) is care for children with life-threatening or life-limiting conditions, and can involve complex high-tech care, which can last for months or years. In 2015, the National Individual Care Plan (ICP) for PPC was developed and has shown to be successful. The ICP can be seen as an instrument to facilitate coordination, quality and continuity of PPC. However, in practice, an ICP is often completed too late and for too few children. We aim to improve the coordination, quality and continuity of care for every child with a life-threatening or life-limiting condition and his/her family by further developing and implementing the ICP in the Netherlands. METHODS AND ANALYSIS: To evaluate the original ICP, ICP 1.0, interviews and questionnaires will be held among parents of children who have or have had an ICP 1.0 and healthcare professionals (HCPs) who used ICP 1.0. Based on the results, ICP 1.0 will be further developed. An implementation strategy will be written and the renewed ICP, ICP 2.0, will be nationally tested in an implementation period of approximately 7 months. During the implementation period, ICP 2.0 will be used for all children who are registered with Children’s Palliative Care teams. After the implementation period, ICP 2.0 will be evaluated using interviews and questionnaires among parents of children who received ICP 2.0 and HPCs who worked with ICP 2.0. Based on these results, ICP 2.0 will be further optimised into the final version: ICP 3.0. ETHICS AND DISSEMINATION: This study received ethical approval. The ICP 3.0 will be disseminated through the Dutch Centre of Expertise in Children’s Palliative Care, to ensure wide availability for the general public and HCPs within PPC. Additionally, we aim to publish study results in open-access, peer-reviewed journals and to present results at national and international scientific meetings

Development and evaluation of a hospital discharge information package to empower parents in caring for a child with a fever

Objectives: First, to explore parents’ views on and experiences of managing their febrile child and to assess their behaviour and needs when in search of information about fever; second, to develop and evaluate a hospital discharge information package about fever in children. Design: Mixed methods: (A) qualitative study with semistructured interviews and a focus group discussion (FGD) and (B) quantitative survey. Setting: Emergency department, non-acute hospital setting and day nursery in Rotterdam, The Netherlands. Participants: Parents of children <18 years (interviews, n=22) parents of children under 5 years (FGD (n=14), survey (n=38)). Intervention: Information package about fever in children (leaflet and website including videos). Outcome measures quantitative survey: Knowledge of fever and confidence in caring for a febrile child (Likert scale 0–5). Results: Parents found fever mostly alarming, especially high fever. Help-seeking behaviour was based on either specific symptoms or on an undefined intuition. When parents did not feel recognised in their concern or felt criticised, anxiety increased as well as the threshold to seek healthcare for future illnesses. Information was needed, especially for situations when the general practitioner or social network were less easily available. This information should be reliable, consistent, available in multiple formats and include advice on management of fever at home and precise referral to medical services. Parents reported improved knowledge about fever (p<0.05) and mentioned improved confidence in caring for a child with fever at home after consulting the information package. Conclusion: Parents of children with a fever visiting the hospital are concerned about specific symptoms or based on an undefined intuition. Rather than telling parents that they should manage their child’s illness at home, healthcare professionals should recognise parental intuition and provide clear information on alarming signs and potential diagnoses to empower parents in the management of their febrile child

Regionale kennisarrangementen: verslag van quickscan en kennisdag 2009

In veel regio’s zijn burgers, bestuurders en ondernemers actief betrokken bij de ontwikkeling van hun omgeving. In het kader van gebiedsplannen wordt gewerkt aan doelen op het terrein van landschap, natuur, landbouw en plattelandsontwikkeling. Hierbij komen uiteenlopende (kennis)vragen naar boven. De kennisvragen worden vaak ad hoc gesteld en men weet vaak niet waar men terecht kan. In een aantal regio’s in Nederland wordt dit verschijnsel onderkend en groeit het besef dat het zoeken naar de antwoorden op deze kennisvragen een serieuze bijdrage levert aan gebiedsontwikkeling. Hier wordt een verbinding met onderwijs en onderzoek gemaakt. Omdat ook bij de kennisinstellingen steeds vaker wordt gezocht naar manieren om meer praktijkgerichte werken, ontstaan er samenwerkingsverbanden. Deze verbindingen tussen regio en onderwijs en onderzoek rond kennisvragen, noemen we een regionaal kennisarrangemen

Required knowledge for guideline panel members to develop healthcare related testing recommendations:a developmental study

Objectives: To define the minimum knowledge required for guideline panel members (healthcare professionals and consumers) involved in developing recommendations about healthcare related testing. Study Design and Setting: A developmental study with a multistaged approach. We derived a first set of knowledge components from literature and subsequently performed semistructured interviews with 9 experts. We refined the set of knowledge components and checked it with the interviewees for final approval.Results: Understanding the test-management pathway, for example, how test results should be used in context of decisions about interventions, is the key knowledge component. The final list includes 26 items on the following topics: health question, test-management pathway, target population, test, test result, interpretation of test results and subsequent management, and impact on people important outcomes. For each item, the required level of knowledge is defined. Conclusion: We developed a list of knowledge components required for guideline panels to formulate recommendations on healthcare related testing. The list could be used to design specific training programs for guideline panel members when developing recommendations about tests and testing strategies in healthcare.</p

Development and evaluation of a hospital discharge information package to empower parents in caring for a child with a fever

ObjectivesFirst, to explore parents’ views on and experiences of managing their febrile child and to assess their behaviour and needs when in search of information about fever; second, to develop and evaluate a hospital discharge information package about fever in children.DesignMixed methods: (A) qualitative study with semistructured interviews and a focus group discussion (FGD) and (B) quantitative survey.SettingEmergency department, non-acute hospital setting and day nursery in Rotterdam, The Netherlands.ParticipantsParents of children \u3c18 years (interviews, n=22) parents of children under 5 years (FGD (n=14), survey (n=38)).InterventionInformation package about fever in children (leaflet and website including videos).Outcome measures quantitative surveyKnowledge of fever and confidence in caring for a febrile child (Likert scale 0–5).ResultsParents found fever mostly alarming, especially high fever. Help-seeking behaviour was based on either specific symptoms or on an undefined intuition. When parents did not feel recognised in their concern or felt criticised, anxiety increased as well as the threshold to seek healthcare for future illnesses. Information was needed, especially for situations when the general practitioner or social network were less easily available. This information should be reliable, consistent, available in multiple formats and include advice on management of fever at home and precise referral to medical services. Parents reported improved knowledge about fever (p\u3c0.05) and mentioned improved confidence in caring for a child with fever at home after consulting the information package.ConclusionParents of children with a fever visiting the hospital are concerned about specific symptoms or based on an undefined intuition. Rather than telling parents that they should manage their child’s illness at home, healthcare professionals should recognise parental intuition and provide clear information on alarming signs and potential diagnoses to empower parents in the management of their febrile child