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Abstract Background Children with life-threatening and life-limiting conditions can experience high levels of suffering due to multiple distressing symptoms that result in poor quality of life and increase risk of long-term distress in their family members. High quality symptom treatment is needed for all these children and their families, even more so at the end-of-life. In this paper, we provide evidence-based recommendations for symptom treatment in paediatric palliative patients to optimize care. Methods A multidisciplinary panel of 56 experts in paediatric palliative care and nine (bereaved) parents was established to develop recommendations on symptom treatment in paediatric palliative care including anxiety and depression, delirium, dyspnoea, haematological symptoms, coughing, skin complaints, nausea and vomiting, neurological symptoms, pain, death rattle, fatigue, paediatric palliative sedation and forgoing hydration and nutrition. Recommendations were based on evidence from a systematic literature search, additional literature sources (such as guidelines), clinical expertise, and patient and family values. We used the GRADE methodology for appraisal of evidence. Parents were included in the guideline panel to ensure the representation of patient and family values. Results We included a total of 18 studies that reported on the effects of specific (non) pharmacological interventions to treat symptoms in paediatric palliative care. A few of these interventions showed significant improvement in symptom relief. This evidence could only (partly) answer eight out of 27 clinical questions. We included 29 guidelines and two textbooks as additional literature to deal with lack of evidence. In total, we formulated 221 recommendations on symptom treatment in paediatric palliative care based on evidence, additional literature, clinical expertise, and patient and family values. Conclusion Even though available evidence on symptom-related paediatric palliative care interventions has increased, there still is a paucity of evidence in paediatric palliative care. We urge for international multidisciplinary multi-institutional collaboration to perform high-quality research and contribute to the optimization of symptom relief in palliative care for all children worldwide.

Abstract Background Provision of paediatric palliative care for children with life-threatening or life-limiting conditions and their families is often complex. Guidelines can support professionals to deliver high quality care. Stakeholders expressed the need to update the first Dutch paediatric palliative care guideline with new scientific literature and new topics. This paper provides an overview of the methodology that is used for the revision of the Dutch paediatric palliative care guideline and a brief presentation of the identified evidence. Methods The revised paediatric palliative care guideline was developed with a multidisciplinary guideline panel of 72 experts in paediatric palliative care and nine (bereaved) parents of children with life-threatening or life-limiting conditions. The guideline covered multiple topics related to (refractory) symptom treatment, advance care planning and shared-decision making, organisation of care, psychosocial care, and loss and bereavement. We established six main working groups that formulated 38 clinical questions for which we identified evidence by updating two existing systematic literature searches. The GRADE (CERQual) methodology was used for appraisal of evidence. Furthermore, we searched for additional literature such as existing guidelines and textbooks to deal with lack of evidence. Results The two systematic literature searches yielded a total of 29 RCTs or systematic reviews of RCTs on paediatric palliative care interventions and 22 qualitative studies on barriers and facilitators of advance care planning and shared decision-making. We identified evidence for 14 out of 38 clinical questions. Furthermore, we were able to select additional literature (29 guidelines, two textbooks, and 10 systematic reviews) to deal with lack of evidence. Conclusions The revised Dutch paediatric palliative care guideline addresses many topics. However, there is limited evidence to base recommendations upon. Our methodology will combine the existing evidence in scientific literature, additional literature, expert knowledge, and perspectives of patients and their families to provide recommendations.

Abstract Background Research suggests that collaborative and tailored approaches with external expertise are important to process implementations. We therefore performed a process evaluation of an intervention using participatory action research, tailored information provision, and external coaching to reduce inappropriate psychotropic drug use among nursing home residents with dementia. The process evaluation was conducted alongside a randomized controlled trial assessing the utility of this approach. Methods We used Leontjevas’ model of process evaluation to guide data collection and analysis, focusing on the relevance and feasibility, extent of performance, and barriers and facilitators to implementation. Data on the relevance and feasibility and on the extent of performance were collected using a questionnaire targeting internal project leaders at nursing homes and our external coaches. Implementation barriers and facilitators were identified by individual semi-structured interviews. The Consolidated Framework for Implementation Research was used to structure and describe the identified barriers and facilitators. Results The intervention was viewed positively, but it was also considered time consuming due to the involvement of many people and designing a tailored action and implementation plan was viewed as complex. The extent of performance differed between nursing homes. Delays in implementation and suboptimal execution of actions may have reduced effectiveness of the RID intervention in some nursing homes. Barriers to implementation were reorganizations, staff turnover, communication issues, unclear expectations, and perceived time pressures. Implementation also depended on the involvement and skills of key stakeholders, and organizations’ readiness to change. Although external coaches stimulated implementation, their additional value was rated variably across organizations. Conclusions Barriers to implementation occurred on several levels and some barriers appear to be inherent to the nursing home environment and could be points of leverage of future implementation trajectories. This underlines the importance of assessing and supporting organizations in their readiness to change. Sensitivity analyses, taking into account the week in which nursing homes started with implementation and the degree to which actions were implemented as intended, will be appropriate in the effect analyses of the trial.

Abstract Background Several efforts have been made to change management of neuropsychiatric symptoms (NPS) in nursing homes, however only few were successful. Numerous barriers to change in healthcare were identified, yet only one conceptual model is known to study their interrelationships. Unfortunately, this model does not discuss specific barriers encountered in nursing home practice. The aim of this study is to explore perceived barriers to change in the management of NPS in nursing homes and to construct a conceptual framework providing insight into the relative importance and interrelationships of these barriers when improving quality of care. Methods Four focus groups were conducted in different dementia special care units of one Dutch nursing home. Participants were either nursing staff, treatment staff or relatives of residents. Qualitative thematic analysis was conducted according to the five phases defined by Braun & Clarke. Finally, a conceptual framework showing the interrelations of barrier-themes was constructed using text fragments of the focus groups. Results We constructed a conceptual framework consisting of eight themes of barriers explaining the extent to which change in NPS-management can be achieved: ‘organizational barriers’, ‘personal barriers’, ‘deficiency of staff knowledge’, ‘suboptimal communication’, ‘inadequate (multidisciplinary) collaboration’, ‘disorganization of processes’, ‘reactive coping’ and ‘differences in perception’. Addressing ‘organizational barriers’ and ‘deficiency of staff knowledge’ is a precondition for change. ‘Suboptimal communication’ and ‘inadequate (multidisciplinary) collaboration’ play a key role in the extent of change achieved via the themes ‘differences in perception’ and ‘disorganization of processes’. Furthermore, ‘personal barriers’ influence all themes - except ‘organizational barriers’ - and may cause ‘reactive coping’, which in turn may lead to ‘difficulties to structure processes’. Conclusions A conceptual framework was created explaining the relationships between barriers towards achieving change focused on improving management of NPS in nursing homes. After this framework has been confirmed and refined in additional research, it can be used to study the interrelatedness of barriers to change, and to determine the importance of addressing them for achieving change in the provided care.

Abstract Background Psychotropic drugs are often prescribed to treat neuropsychiatric symptoms in nursing home residents with dementia, despite having limited efficacy and considerable side effects. To reduce the inappropriate prescribing of these psychotropic drugs, various non-pharmacological, psychosocial, person-centered, or multidisciplinary interventions are advocated. However, existing multidisciplinary interventions have shown variable effects, with limited effectiveness often resulting from suboptimal implementation. We hypothesize that an effective intervention needs to fit the local situation of a nursing home and that support should be offered during implementation. Methods We will embed participatory action research within a stepped-wedge cluster randomized controlled trial to study the effects of a tailored intervention and implementation plan to reduce inappropriate psychotropic drug prescribing. Nursing homes will be provided with tailored information about the perceived problems of managing neuropsychiatric symptoms and we will offer coaching support throughout. Alongside the participatory action research, we will perform a process evaluation to examine the quality of the study, the intervention, and the implementation. Our aim is to recruit 600 residents from 16 nursing homes throughout the Netherlands, with measurements taken at baseline, 8 months, and 16 months. Nursing homes will be randomly allocated to an intervention or a deferred intervention group. During each intervention stage, we will provide information about inappropriate psychotropic drug prescribing, neuropsychiatric symptoms, and difficulties in managing neuropsychiatric symptoms through collaboration with each nursing home. After this, a tailored intervention and implementation plan will be written and implemented, guided by a coach. The primary outcome will be the reduction of inappropriate prescribing, as measured by the Appropriate Psychotropic drug use In Dementia index. Secondary outcomes will be the frequency of psychotropic drug use and neuropsychiatric symptoms, plus quality of life. A mixed methods design will be used for the process evaluation. Effects will be assessed using multilevel analyses. The project leader of the nursing home and the coach will complete questionnaires and in-depth interviews. Discussion We anticipate that the proposed tailored intervention with coaching will reduce inappropriate psychotropic drug prescribing for nursing home residents with neuropsychiatric symptoms. This study should also provide insights into the barriers to, and facilitators of, implementation. Trial registration NTR5872, registered on July 2, 2016.

Abstract The uncertainty regarding the effects and risks of nanomaterials on human health and the environment, and how they should be tested and assessed in the context of current regulations, is clearly holding back the full exploitation of the innovative potential of nanomaterials. To reduce this uncertainty, the European Union funded NANoREG and ProSafe projects (jointly referred to as N1P) have made a critical evaluation of methods to test and assess these risks in the context of the current registration, evaluation, authorisation and restriction of chemicals (REACH) regulation. Where essential methods were lacking, new ones have been developed. For several existing methods, adjustments have been proposed. Possible improvements to the REACH regulation have also been identified in these projects. The results of N1P have been translated into recommendations for (European) policy makers and regulators. Part of them have a “no regret” character, meaning that the proposed actions can be considered as necessary, feasible, effective and cost efficient. The recommended measures proposed for data quality and data management will create a more solid information basis for risk assessment of nanomaterials. When implemented, the recommendations regarding REACH will improve the application of REACH in both a legal and scientific sense. In practical terms however, the application of REACH will remain complex, time-consuming and costly. Besides that, adapting and specifying the information requirements and test methods in REACH for nanomaterials that are now on the market, will not solve the regulatory hurdles for next generation (nano) materials. To better align the dynamic character of developing new materials and the static character of regulations, it is recommended to explore possibilities of a more future proof approach for securing the safety of new (nano) materials.

New online forms of giving have appeared next to more traditional ways like door‐to‐door collections. One of these new forms is philanthropic crowdfunding: donation‐ and reward‐based crowdfunding. Crowdfunding is a promising method for mobilising and recruiting donors who may be unreachable via traditional methods. We analysed online giving via crowdfunding, focusing on donor characteristics and giving behaviour before and during the COVID‐19 pandemic. Our analysis comprises survey research (n = 2125) observing giving behaviour on an individual level for both donors and non‐donors. Our contributions are twofold. First, we report on the characteristics of donors who give to crowdfunding sources and in relation to donors who give via a door‐to‐door (i.e., 'traditional') collection focusing on micro‐ rather than macro‐level data. Second, we compare the giving behaviour via crowdfunding with references to door‐to‐door collections before and during the COVID‐19 pandemic. We show that the percentage of individuals supporting crowdfunding did not increase between 2018 (11%) and 2020 (12%). Regarding the amount, donors donated 13% higher amounts in 2020, but the difference was not significant. Regarding the characteristics of donors, we find that social media has a substantive role in giving via crowdfunding irrespective of other personal markers such as age, education, income, and gender, while this is not relevant in the case of door‐to‐door collection. Moreover, most people give to crowdfunding projects that are connected to an acquaintance, which signals that familiarity with the person initiating the crowdfunding projects plays a role. We conclude that crowdfunding, relative to more traditional giving, focuses more on informal giving than formal giving. Such an understanding requires different strategies and stimuli to increase giving via crowdfunding. [ABSTRACT FROM AUTHOR]