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Background: Community engagement is seen as key to citizen‐centred and sustainable healthcare systems as involving citizens in the designing, implementation and improvement of services and policies is thought to tailor these more closely to communities' own needs and experiences. Organizations have struggled to reach out to and involve disadvantaged citizens. This paper examines how if, why, and when low‐income citizens wish to be involved. Methods: For this qualitative realist case‐study, 19 interviews (one dyad) were held with (20) low‐income citizens in two Dutch municipalities. Additionally, the results were discussed with a reference panel consisting of professionals and citizens to enrich the results and to ensure the results had face validity. Results: The results showed four different ways in which low‐income citizens wished to be involved: (a) in a practical/volunteer way; (b) as a buddy; (c) as a lay expert; (d) not involved at all. The factors affecting citizens' interest and capacity to participate include citizens' own experiences of the services they access and their personal situations, e.g. their mental or physical health, extent of financial crisis, family situation, home environment. None of the interviewees was currently involved, but all had ideas for improving health(care) services and policies. Citizens' experiences of the services they accessed acted as a motivator for some to be involved as they wanted to ensure others would not have the same struggles, while for others their own needs and an apathetic system remained too high a barrier. To enable involvement, citizens need continued support for their own health(care) and financial situation, better communication and accessibility from services, practical support (e.g., training and bus passes) and recognition for their input (e.g., monetary compensation). Conclusion: The study shows that citizens' experiences of the services they accessed influenced if and how they wanted to be involved with health and care services. Despite the fact that all participants had shared solid ideas for improving services and policies, they were hindered by a bureaucratic, impersonal and inaccessible system. Organizations seem to underestimate the required investments to reach out to low‐income citizens and the support required to ensure their involvement. Patient and Public Involvement (PPI) in Study: Citizens as well as PPI organizations were members of the reference panel who helped formulate the research questions and recruitment strategy. The local reference panel also helped to interpret and refine the initial findings. [ABSTRACT FROM AUTHOR]

Background: End-of-life (EoL) care volunteers in hospitals are a novel approach to support patients and their close ones. The iLIVE Volunteer Study supported hospital volunteer coordinators from five European countries to design and implement an EoL care volunteer service on general wards in their hospitals. This study aimed to identify and explore barriers and facilitators to the implementation of EoL care volunteer services in the five hospitals. Methods: Volunteer coordinators (VCs) from the Netherlands (NL), Norway (NO), Slovenia (SI), Spain (ES) and United Kingdom (UK) participated in a focus group interview and subsequent in-depth one-to-one interviews. A theory-inspired framework based on the five domains of the Consolidated Framework for Implementation Research (CFIR) was used for data collection and analysis. Results from the focus group were depicted in radar charts per hospital. Results: Barriers across all hospitals were the COVID-19 pandemic delaying the implementation process, and the lack of recognition of the added value of EoL care volunteers by hospital staff. Site-specific barriers were struggles with promoting the service in a highly structured setting with many stakeholders (NL), negative views among nurses on hospital volunteering (NL, NO), a lack of support from healthcare professionals and the management (SI, ES), and uncertainty about their role in implementation among VCs (ES). Site-specific facilitators were training of volunteers (NO, SI, NL), involving volunteers in promoting the service (NO), and education and awareness for healthcare professionals about the role and boundaries of volunteers (UK). Conclusion: Establishing a comprehensive EoL care volunteer service for patients in non-specialist palliative care wards involves multiple considerations including training, creating awareness and ensuring management support. Implementation requires involvement of stakeholders in a way that enables medical EoL care and volunteering to co-exist. Further research is needed to explore how trust and equal partnerships between volunteers and professional staff can be built and sustained. Trial registration: NCT04678310. Registered 21/12/2020. [ABSTRACT FROM AUTHOR]

Background: Low participation rates among ethnic minorities in preventive healthcare services are worrisome and not well understood. The objective of this study was to explore how adults of Turkish and Moroccan origin living in the Netherlands, aged 45 years and older, can be reached to participate in health checks for cardio-metabolic diseases and follow-up (lifestyle) advice. Methods: This mixed-methods study used a convergent parallel design, to combine data of one quantitative study and three qualitative studies. Questionnaire data were included of 310 respondents, and interview data from 22 focus groups and four individual interviews. Participants were recruited via a research database, general practitioners and key figures. Quantitative data were analysed descriptively and qualitative data were analysed using a thematic approach. Results: Regarding health checks, 50 % (95 % G 41;59) of the Turkish questionnaire respondents and 66 % (95 % G 57;76) of the Moroccan questionnaire respondents preferred an invitation from their general practitioner. The preferred location to fill out the health check questionnaire was for both ethnic groups the general practitioner's office or at home, on paper. Regarding advice, both groups preferred to receive advice at individual level rather than in a group, via either a physician or a specialised healthcare professional. It was emphasised that the person who gives lifestyle advice should be familiar with the (eating) habits of the targeted individual. Sixty-one percent (95 % G 53;69) of the Turkish respondents preferred to receive information in their native language compared to 37 % (95 % G 29;45) of the Moroccan respondents. Several participants mentioned a low proficiency in the local language as an explanation for their preference to fill out the health check questionnaire at home, to receive advice from an ethnic-matched professional, and to receive information in their native language. Conclusions: The general practitioner is considered as a promising contact to reach adults of Turkish and Moroccan origin for health checks or (lifestyle) advice. It might be necessary to provide information in individuals' native language to overcome language barriers. In addition, (lifestyle) advice must be tailored. The obtained insight into preferences of Turkish and Moroccan adults regarding reach for preventive healthcare services could help professionals to successfully target these groups. [ABSTRACT FROM AUTHOR]

Background In Europe, more than 15 million people live with heart failure (HF). It imposes an enormous social, organizational and economic burden. As a reaction to impending impact on healthcare provision, different country-specific structures for HF-care have been established. The aim of this report is to provide an overview and compare the HF-care approaches of Germany, Ireland, the Netherlands and the UK, and to open the possibility of learning from each other's experience. Methods A mixed methods approach was implemented that included a literature analysis, interviews and questionnaires with HF-patients and caregivers, and expert interviews with representatives from healthcare, health service research and medical informatics. Results The models of HF-care in all countries analyzed are based on the European Society of Cardiology guidelines for diagnosis and treatment of HF. Even though the HF-models differed in design and implementation in practice, key challenges were similar: (i) unequal distribution of care between urban and rural areas, (ii) long waiting times, (iii) unequal access to and provision of healthcare services, (iv) information and communication gaps and (v) inadequate implementation and financing of digital applications. Conclusion Although promising approaches exist to structure and improve HF-care, across the four countries, implementation was reluctant to embrace novel methods. A lack of financial resources and insufficient digitalization making it difficult to adopt new concepts. Integration of HF-nurses seems to be an effective way of improving current models of HF-care. Digital solutions offer further opportunities to overcome communication and coordination gaps and to strengthen self-management skills. [ABSTRACT FROM AUTHOR]

Transgender and non-binary (TNB) people are at increased risk of adverse sexual and reproductive health (SRH) outcomes compared to cisgender people. With this qualitative study, we investigated the experiences of TNB people with access to primary SRH care in the Netherlands. We conducted semi-structured, explorative interviews with fourteen TNB individuals. Data were analysed using thematic analysis. We identified three themes: 'navigating cisgender assumptions', 'depending on your healthcare provider' and 'access requires labour'. In primary SRH care, respondents felt that healthcare providers made incorrect assumptions about their care needs which required respondents to actively disclose their gender identity or medical history. However, some respondents felt disclosure also exposed them to clinical bias, or reduced them to a medical category 'transgender' that their healthcare providers perceived to require specialised knowledge. In this context, respondents felt the onus was on them to ensure their SRH care needs were met. Using the concept of trans erasure, we highlight how TNB people are put at risk of adverse SRH outcomes. Creating equitable care access requires not only that providers are educated on TNB health needs and their own cisnormativity, but also an ongoing, critical reflection on the use of gender- and sex-based categories in medicine. [ABSTRACT FROM AUTHOR]

Background: Palliative care provision for persons experiencing homelessness is often poor. A threefold consultation service intervention was expected to increase knowledge of palliative care and multidisciplinary collaboration, and improve palliative care for this population. This intervention comprised: 1) consultation of social service professionals by palliative care specialists and vice versa; 2) multidisciplinary meetings with these professionals; and 3) training and education of these professionals. We aimed to evaluate the implementation process and its barriers and facilitators of this service implemented within social services and healthcare organizations in three Dutch regions. Methods: A process evaluation using structured questionnaires among consultants, semi-structured individual and group interviews among professionals involved, and (research) diaries. Qualitative data were analysed using thematic analysis. The process evaluation was structured using the Reach, Adoption, Implementation and Maintenance dimensions of the RE-AIM framework. Results: All three regions adopted all three activities of the intervention, with differences between the three regions in the start, timing and frequency. During the 21-month implementation period there were 34 consultations, 22 multidisciplinary meetings and 9 training sessions. The professionals reached were mainly social service professionals. Facilitators for adoption of the service were a perceived need for improving palliative care provision and previous acquaintance with other professionals involved, while professionals' limited skills in recognizing, discussing and prioritizing palliative care hindered adoption. Implementation was facilitated by a consultant's expertise in advising professionals and working with persons experiencing homelessness, and hindered by COVID-19 circumstances, staff shortages and lack of knowledge of palliative care in social service facilities. Embedding the service in regular, properly funded meetings was expected to facilitate maintenance, while the limited number of persons involved in this small-scale service was expected to be an obstacle. Conclusions: A threefold intervention aimed at improving palliative care for persons experiencing homelessness is evaluated as being most usable when tailored to specific regions, with bedside and telephone consultations and a combination of palliative care consultants and teams of social service professionals. It is recommended to further implement this region-tailored intervention with palliative care consultants in the lead, and to raise awareness and to remove fear of palliative care provision. [ABSTRACT FROM AUTHOR]

Background: People experiencing homelessness often encounter progressive incurable somatic diseases in combination with psychiatric and psychosocial problems, and many need palliative care at the end of their lives. Little is known about how palliative care for this group can be started in good time and provided optimally. The objective of this paper is to give insight into the extent people experiencing homelessness have access to good palliative care. Methods: Qualitative in-depth interviews were held to reconstruct the cases of 19 people experiencing homelessness in the Netherlands. Eight cases concerned persons being in the palliative phase (using the surprise question) and the other 11 cases concerned persons recently died after a period of ill health due to somatic illness. We used purposive sampling until data saturation was reached. The total number of interviews was 52. All interviews were transcribed verbatim and analysed inductively. Results: Three key themes were: 'late access', 'capricious trajectory' and 'complex care'. The first key theme refers to the often delayed start of palliative care, because of the difficulties in recognizing the need for palliative care, the ambivalence of people experiencing homelessness about accepting palliative care, and the lack of facilities with specific expertise in palliative care for them. The second key theme refers to the illness trajectory, which is often capricious because of the challenging behaviour of people experiencing homelessness, an unpredictable disease process and a system not being able to accommodate or meet their needs. The third key theme refers to the complexity of their care with regard to pain and symptom control, psychosocial and spiritual aspects, and the social network. Conclusions: The care for in the palliative phase does not satisfy the core requirements of palliative care since there are bottlenecks regarding timely identification, the social network, and the assessment and management of physical symptoms and psychosocial and spiritual care needs. Education in palliative care of outreach professionals, training staff in shelters in the provision of palliative care, and building a network of palliative care specialists for people experiencing homelessness. [ABSTRACT FROM AUTHOR]

Policy PointsRealist evaluation (RE) is an emerging and promising research approach for evaluating integrated care, addressing what works, how, for whom, and in what circumstances.The rich philosophical foundation of RE, critical realism, can help to systematically unravel an integrated care program's initial theory prior to implementation, as a first step within RE.RE can be considered a robust methodological asset in integrated care research by facilitating a deeper level of insight into program functioning than traditional forms of evaluation do and by shaping a realist‐informed monitoring and evaluation process. Context: The complexity of integrated care and the need for transferable evaluation insights ask for a suitable evaluation paradigm. Realist evaluation (RE), underpinned by the philosophy of critical realism, is a theory‐driven approach that addresses what works, how, for whom, and in what circumstances. The current study illustrates the process needed for RE's first step: eliciting the initial program theory (IPT). The TARGET program, a Dutch primary care initiative to facilitate more integrated care for chronically ill patients, i.e., care that is efficient, tailored, and holistic, was taken as a real‐world case. Methods: An RE approach informed the phased IPT elicitation: (1) identifying an abstract theory framework; (2) formulating the preliminary IPT, building on the abstract theory and informed by previous scientific studies that underpin TARGET; and (3) refining the preliminary IPT, informed by RE expert interviews (n = 7). An RE heuristic tool, specifying the interplay between intervention‐context‐actors‐mechanisms‐outcomes (ICAMO) and retroductive reasoning, was applied to synthesize the underlying theory of individual TARGET components into TARGET's IPT. Findings: Separate but related IPTs were identified for the two main types of actors involved in TARGET: primary care professionals (PCPs) and patients. For both actors, two sorts of mechanisms are assumed to be activated by TARGET, which—via instrumental outcomes—contribute to long‐term quadruple aim targets. The first is confidence to enhance PCPs' person‐centered conversational skills and to increase patients' active engagement in TARGET. The second is mutual trust, between PCPs and patients and between PCPs and their network partners. A supportive context is assumed crucial for activating these mechanisms—for example, sufficient resources to invest in integrated care. Conclusions: Although the IPT elicitation process is time intensive and requires a mind shift, it facilitates a deeper insight into program functioning than accommodated by the prevailing experimental designs in integrated care. Furthermore, the design of a realist‐informed evaluation process can be informed by the IPT. [ABSTRACT FROM AUTHOR]

Background: The aging of migrant populations across Europe challenges researchers in palliative care to produce knowledge that can be used to respond to the needs of the growing group of patients with a migration background and address ethnic disparities in palliative care. The aim of this study was to identify what factors influence researchers' efforts to address responsiveness of palliative care to patients with a migration background and other underserved populations in their projects. Methods: We conducted semi-structured interviews with 11 researchers involved in seven projects under the Dutch national program for palliative care innovation. Results: Researchers' efforts to address responsiveness of palliative care in their projects were influenced by individual factors, i.e. awareness of the need for responsiveness to patients with a migration background; experience with responsiveness; and, differences in perceptions on responsiveness in palliative care. Researchers' efforts were furthermore influenced by institutional factors, i.e. the interaction with healthcare institutions and healthcare professionals as they rely on their ability to identify the palliative patient with a migration background, address the topic of palliative care, and enrol these patients in research; scientific standards that limit the flexibility needed for responsive research; and, the responsiveness requirements set by funding agencies. Conclusion: Researchers play a key role in ensuring research addresses responsiveness to patients with a migration background. Such responsiveness may also benefit other underserved populations. However, at times researchers lack the knowledge and experience needed for responsive research. To address this we recommend training in responsiveness for researchers in the field of palliative care. We also recommend training for healthcare professionals involved in research projects to increase enrolment of patients with a migration background and other underrepresented populations. Lastly, we encourage researchers as well as research institutions and funding agencies to allow flexibility in research practices and set a standard for responsive research practice. [ABSTRACT FROM AUTHOR]

Objective: Our aim was to investigate why participants opted out of colonoscopy following a positive screening result for colorectal cancer. Design: Semi-structured, qualitative, single interviews. We audio-recorded and transcribed all interviews verbatim and used Strauss and Corbin’s concept of open, axial, and selective coding to identify the main categories shared across all interviews. These formed the basis of our findings. Setting: A Danish national colorectal cancer screening programme. Subjects: Single interviews with 13 participants who declined to have a colonoscopy. Main outcome measures: Reasons to decline colonoscopy after positive screening test. Results: Participants gave 42 different reasons for deciding not to have a colonoscopy and we coded them into nine main categories; Practical barriers, Discomfort of the examination, Personal integrity, Multimorbidity, Feeling healthy, Not having the energy, Belief that cancer is not present, Risk of complications, and Distrust in the accuracy of the iFOBT. Conclusions: Our findings suggest that some practical barriers could be quite easily addressed, by offering the participants alternative management and procdures. Implications: Further research is needed to examine how widely our findings are represented in the general population, and how general practitioners should consult with patients who have opted out of colonoscopy, despite a positive screening result. Key points:   Some screening participants are reluctant to proceed with further diagnostic tests for colorectal cancer following a positive screening result.   • Interviews with people, who had refused a follow-up colonoscopy, discovered nine categories (42 reasons) of reasons for refusal.   • Reluctance can be addressed by offering support with pre-procedure preparations and alternatives to colonoscopy.   • General practitioners face ethical dilemmas and challenges, when patients at risk of colorectal cancer decline to proceed with screening. [ABSTRACT FROM AUTHOR]

Background: Collaborative partnerships are considered an essential strategy for integrating local disjointed health and social services. Currently, little evidence is available on how integrated care arrangements between professionals and organisations are achieved through the evolution of collaboration processes over time. The first aim was to develop a typology of integrated care projects (ICPs) based on the final degree of integration as perceived by multiple stakeholders. The second aim was to study how types of integration differ in changes of collaboration processes over time and final perceived effectiveness.Methods: A longitudinal mixed-methods study design based on two data sources (surveys and interviews) was used to identify the perceived degree of integration and patterns in collaboration among 42 ICPs in primary care in The Netherlands. We used cluster analysis to identify distinct subgroups of ICPs based on the final perceived degree of integration from a professional, organisational and system perspective. With the use of ANOVAs, the subgroups were contrasted based on: 1) changes in collaboration processes over time (shared ambition, interests and mutual gains, relationship dynamics, organisational dynamics and process management) and 2) final perceived effectiveness (i.e. rated success) at the professional, organisational and system levels.Results: The ICPs were classified into three subgroups with: 'United Integration Perspectives (UIP)', 'Disunited Integration Perspectives (DIP)' and 'Professional-oriented Integration Perspectives (PIP)'. ICPs within the UIP subgroup made the strongest increase in trust-based (mutual gains and relationship dynamics) as well as control-based (organisational dynamics and process management) collaboration processes and had the highest overall effectiveness rates. On the other hand, ICPs with the DIP subgroup decreased on collaboration processes and had the lowest overall effectiveness rates. ICPs within the PIP subgroup increased in control-based collaboration processes (organisational dynamics and process management) and had the highest effectiveness rates at the professional level.Conclusions: The differences across the three subgroups in terms of the development of collaboration processes and the final perceived effectiveness provide evidence that united stakeholders' perspectives are achieved through a constructive collaboration process over time. Disunited perspectives at the professional, organisation and system levels can be aligned by both trust-based and control-based collaboration processes. [ABSTRACT FROM AUTHOR]

Introduction: Participation in Human Papillomavirus (HPV) vaccination and Papanicolaou Screening (Pap smears) is low among ethnic minorities in the Netherlands and hardly any information is available about the cervical cancer prevention methods of Somali women living in the diaspora. This qualitative study, based on the Health Belief Model (HBM) and an intersectionality-based framework, explores the perceptions of Somali women living in the Netherlands regarding measures to prevent cervical cancer. Methods: Semi-structured interviews have been conducted with young Somali women aged 17-21 years (n = 14) and Somali mothers aged 30-46 years (n = 6). Two natural group discussions have been conducted with 12 and 14 Somali mothers aged 23-66 years. The collected data has been analyzed thematically for content. Results: In this study, we have identified perceived barriers to the use of preventive measures across three major themes: (1) Somali women and preventive healthcare; (2) Language, knowledge, and negotiating decisions; and (3) Sexual standards, culture, and religion. Many issues have been identified across these themes, e.g., distrust of the Dutch health care system or being embarrassed to get Pap smears due to Female Genital Mutilation (FGM) and having a Dutch, male practitioner; or a perceived low susceptibility to HPV and cancer because of the religious norms that prohibit sex before marriage. Conclusions: Current measures in the Netherlands to prevent women from developing cervical cancer hardly reach Somali women because these women perceive these kinds of preventative measures as not personally relevant. Dutch education strategies about cervical cancer deviate from ways of exchanging information within the Somali community. Teachers can provide culturally sensitive information to young Somali women in schools. For Somali mothers, oral education (e.g., poetry or theater) about the Dutch health care system and men's roles in HPV transmission may be useful. An intersectional approach, grounded in the HBM, is recommended to promote equal access to preventive health care for Somali women. [ABSTRACT FROM AUTHOR]

Background: Comorbid depression is common in patients with type 2 diabetes (DM2) and/or coronary heart disease (CHD) and is associated with poor quality of life and adverse health outcomes. However, little is known about patients' and practice nurses' (PNs) perceptions of depression. Tailoring care to these perceptions may affect depression detection and patient engagement with treatment and prevention programs. This study aimed to explore patients' and PNs' perceptions of depression in patients with DM2/CHD screened for subthreshold depression. Methods: A qualitative study was conducted as part of a Dutch stepped-care prevention project. Using a purposive sampling strategy, data were collected through semi-structured interviews with 15 patients and 9 PNs. After consent, all interviews were recorded, transcribed verbatim and analyzed independently by two researchers with Atlas.ti.5.7.1 software. The patient and PN datasets were inspected for commonalities using a constant comparative method, from which a final thematic framework was generated. Results: Main themes were: illness perception, need for care and causes of depression. Patients generally considered themselves at least mildly depressed, but perceived severity levels were not always congruent with Patient Health Questionnaire 9 scores at inclusion. Initially recognizing or naming their mental state as a (subthreshold) depression was difficult for some. Having trouble sleeping was frequently experienced as the most burdensome symptom. Most experienced a need for care; psycho-educational advice and talking therapy were preferred. Perceived symptom severity corresponded with perceived need for care, but did not necessarily match help-seeking behaviour. Main named barriers to help-seeking were experienced stigma and lack of awareness of depression and mental health care possibilities. PNs frequently perceived patients as not depressed and with minimal need for specific care except for attention. Participants pointed to a mix of causes of depression, most related to negative life events and circumstances and perceived indirect links with DM2/CHD. Conclusion: Data of the interviewed patients and PNs suggest that they have different perceptions about (subthreshold) depressive illness and the need for care, although views on its causes seem to overlap more. [ABSTRACT FROM AUTHOR]