Search

The last three census data highlighted that UK Bangladeshi communities have the worst health outcomes. This includes a higher risk of type two diabetes and heart diseases; both are risk factors for developing vascular dementia. However, little is known about Bangladeshi community members' understandings of dementia, including cultural myths. This paper focuses on the cultural myths, superstitions, and stigma surrounding dementia in an English Bangladeshi community from the direct experiences of people living with dementia, their caregivers, and the views of dementia service providers/stakeholders. This qualitative research was undertaken with three distinct participant groups using semistructured interviews (n = 25), who were recruited from community settings. The first and second participant groups explored the experiences of people with dementia (n = 10) and their family caregivers (n = 10). The third group examined stakeholders'/service providers' views (n = 5). Interviews were recorded digitally and transcribed verbatim. Findings were reached using an interpretive approach, emphasising the sense people make in their own lives and experiences and how they frame and understand dementia. The study revealed that participants with dementia and their caregivers have "alternative" knowledge about dementia and do not necessarily understand dementia in a Westernised scientific/biomedical context. Misconceptions about dementia and belief in various myths and superstitions can lead people to go to spiritual healers or practice traditional remedies rather than to their GPs, delaying their dementia diagnosis. This paper concludes that there is a lack of awareness among the Bangladeshi participants and a need for targeted awareness about dementia to help dispel cultural myths and combat the stigma surrounding dementia within the Bangladeshi community. [ABSTRACT FROM AUTHOR]

Background: The role of patient participation and representation during crises, such as the COVID‐19 pandemic, has been under‐researched. Existing studies paint a pessimistic picture of patient representation during the pandemic. However, there are indications that patient representatives have adapted to the new situation and can contribute to the resilience of healthcare systems. This paper aims to further explore the potential contribution of patient representatives for healthcare system resilience during the COVID‐19 pandemic. Methods: The study used a qualitative approach. We conducted a thematic analysis on the following data: interviews with client council members (n = 32) and representatives from patient organizations (n = 6) and focus groups (n = 2) to investigate patient representation on both the national policy level and organizational level in the Netherlands. Results: We identified the crisis discourse, the dependent position, the diversity of patient perspectives and the layered decision‐making structure as themes that help to understand what made patient representation in pandemic times a struggle for national and local patient representatives. The analysis of the subjects these representatives put forward during decision‐making shows that their input can play an important role in broadening discussions, challenging decisions, and suggesting alternatives during a crisis. We identified several strategies (e.g., collaborating with other actors, proactively putting subjects on the policy agenda, finding new ways of contacting their 'constituency') used by the patient representatives studied to exert influence despite the difficulties encountered. Conclusions: The struggle for patient representation during pandemic decision‐making is a missed opportunity for resilient healthcare systems as these representatives can play a role in opening up discussions and putting different perspectives to the fore. Moreover, the adaptive strategies used by representatives to influence decision‐making offer lessons for future representation activities. However, adaptations to the crisis decision‐making structure are also needed to enable patient representatives to play their role. Patient Contribution: We conducted interviews with patient representatives and discussed our preliminary findings with patient representatives during the focus groups. Zorgbelang, a patient organization supporting client councils and enabling and organizing patient participation for organizations and municipalities, was partner in this research and contributed to the interview guide, conducting interviews and focus groups. Additionally, the analysis made by the first author was discussed and refined multiple times with the partners of Zorgbelang and one of them co‐authored this paper. [ABSTRACT FROM AUTHOR]

Background: For adults with inflammatory bowel disease (IBD), they experience many challenges in dietary decision‐making. Thus, this study examined the perspective and experiences of adults with IBD in dietary decision‐making. Objective: This study aimed to explore the perception and consideration of people with IBD in their daily dietary decisions through monitoring, interpretation and action during the decision‐making process. Design: A qualitative study of individuals affected by IBD was conducted through semistructured interviews. Results: Twenty patients were recruited from four tertiary hospitals in Nanjing, China, and each participant completed a semistructured interview. The majority of participants reported on the process and experience of dietary decision‐making. Key themes were categorised into three stages: (1) assessing needs, preferences and food cues (monitor); (2) moving from experience to expertise (interpret) and (3) balancing expectations amidst limitations (act). The majority of participants reported that their decisions were shaped by assessing current disease status and food cues. Those interviewed with IBD were willing to make tradeoffs for bowel stability, but their decisions were also influenced by past dietary experiences and traditional Chinese beliefs. The lack of awareness of dietary guidelines was a significant barrier to healthy eating decisions. Positive or negative feelings accompanied dietary decisions. Conclusion: Although most people with IBD change their diet after diagnosis, the changes made are often inconsistent with existing dietary recommendations. Several factors can influence the dietary decision‐making process. This study will help assess the experiences of people with IBD in dietary decision‐making to encourage the formation of targeted dietary health and well‐being interventions. Knowledge of nutrition and diet should be provided in education and training programmes for IBD management. Patient or Public Contribution: The first three authors of this paper were the lead researchers in this study's design. These authors were mentored by patient researchers who also contributed to the manuscript, and the research process was co‐lead and directed by other patient participants and consultants. The results of this paper were directly obtained from patient participants. [ABSTRACT FROM AUTHOR]

Background: Glioblastoma, a high-grade primary brain cancer, has a median survival of approximately 14 months. Post-mortem brain donation provides insight to pathogenesis along with spatial and temporal heterogeneity. Post-mortem brain biobanking programs are increasing in number and the need to understand and improve the associated human experience is pressing. This study aims to qualitatively explore the experiences of next of kin (NOK) following the death and brain donation of a loved one and to understand the impact such programs have on NOK carers. Method: We interviewed 29 NOK following the death of their loved one and subsequent brain donation. Thematic analysis was conducted on the transcribed, qualitative interviews. Results: Four themes were identified; (1) Brain donation is a straightforward decision grounded in altruism and pragmatism; (2) Supporting donors is a source of comfort, pride and empowerment; (3) Brain donation can provide meaning for suffering and tragedy and (4) Perceptions of procedures and processes when supporting a loved one to donate. Insights into areas for improvement, for example transporting donors following a home death and the role of the body bag were also noted. Conclusion: Supporting a loved one to donate their brain can be a positive experience providing a source of hope, empowerment and purpose for NOK. Data indicating areas for consideration are broadly relevant for improving the delivery of brain donation programs for future donors and their loved ones. Plain language summary: Understanding how loved ones feel about someone close to them donating their brain to research after their death from brain cancer The act of donating brain tissue after death from brain cancer is a huge gift to medical research and may have an impact on the ability of the scientific community to improve outcomes for people diagnosed with brain cancers. While we understand how valuable these donations are for research, we need more work to understand how these donations impact the people who donate and those who love and support them. This paper explores the experiences of people who have lost someone to brain cancer who then went on to donate their brain tissue after their death. Through the use of interviews, it explores the impact that the donation has on a loved one or next of kin from providing a source of comfort, empowerment, pride or an alternative to 'senseless' suffering and tragedy. It also provides areas that should be considered by people who are facilitating brain donations to ensure that any potential, harm or upset can be minimized. [ABSTRACT FROM AUTHOR]

In 2020 it is estimated that 281 million people were international migrants. Migrants constitute a potentially vulnerable population in terms of facing discrimination, poor living and housing conditions, and insufficient access to healthcare services. Due to the armed conflict in Ukraine in 2022, almost 10 million people crossed the Polish border within a year of the outbreak of the conflict. The objective of this paper is to present the use of primary healthcare services by people migrating from Ukraine to Poland and identify the barriers in access to healthcare by this group of persons. This study used a qualitative research technique in the form of an expert interview using individual in-depth interviews (IDI). The study group consisted of professionally active primary healthcare providers (doctors, nurses, and facility managers) in Poland. Research was carried out in the areas regarding the availability of healthcare, the potential threats and challenges, and possible system solutions. The results showed that the most common cause for doctor's appointments among migrants are respiratory infections, including COVID-19. Many cases were related to back pain, mainly resulting from the physical work of the patients. Additionally, some barriers to access and the provision of healthcare services for patients from Ukraine were identified. The majority (75%) of respondents indicated language as a significant barrier when providing services. Based on the study results, we recommend creating a dedicated website and telephone hotline for this group of persons as well as the use of traditional media to distribute information about access to healthcare services. It is also essential to focus on assistance for older people, since they may experience more difficulties with language and navigating the healthcare system. [ABSTRACT FROM AUTHOR]

The emergence of the COVID-19 pandemic significantly changed the prenatal care experience, specifically regarding medical appointments and social opportunities. It is critical to capture this change through the narratives of pregnant people, particularly those of marginalized populations, whose voices may often be underrepresented in the literature. This mixed-methods paper summarizes the experiences of 40 pregnant Black/African American (AA) women during the COVID-19 pandemic. A cross-sectional, online survey was administered between 2020 and 2021 to assess prenatal health and the impacts of the COVID-19 pandemic on patients' pregnancy experience. Coping behaviors during the pandemic were self-reported using the COPE-IS. Univariate analyses were conducted. An additional analysis of participants (n = 4) was explored through a week-long qualitative exercise using a photo documentation procedure. Photo-Elicitation Interviews (PEI) were conducted to capture and center their pandemic pregnancy experiences. Sources of stress during the pandemic varied, with the most common being financial concerns (n = 19, 47.5%). Over half of the sample (n = 18, 54.5%) self-reported increases in their positive coping behaviors during the pandemic, such as communicating with friends and family, talking to healthcare providers, listening to music, and engaging in spiritual practices–such as prayer. The four PEI study participants reflected on the impacts of social distancing on their prenatal experience and mentioned hospital and provider-related weariness due to their race. The findings of this study suggest that during the COVID-19 pandemic, Black/AA pregnant women in Charlotte, NC used social support, mindfulness practices, self-advocacy, and health literacy to navigate challenges present during their prenatal health experience. This paper highlights the personal, social, and structural experiences of pregnant women during a public health crisis so that responsive and effective programs or policies can be planned in the future. [ABSTRACT FROM AUTHOR]

Understanding the drivers of improvements in child undernutrition at only the national level can mask subnational differences. This paper aimed to understand the contributions of factors in the enabling environment to observed differences in stunting reduction between districts in Rwanda. In 2017, we conducted 58 semi‐structured interviews with mid‐level actors (n = 38) and frontline workers (n = 20) implementing Rwanda's multi‐sectoral nutrition policy in five districts in which stunting decreased (reduced districts) and five where it increased or stagnated (non‐reduced districts) based on Rwanda's 2010 and 2014/15 Demographic and Health Surveys. Mid‐level actors are government officials and service providers at the subnational level who represent the frontline of government policy. Interviews focused on political commitment to and policy coherence in nutrition, and contributors to nutrition changes. Responses were coded to capture themes on the changes and challenges of these topics and compared between reduced and non‐reduced districts. Descriptive statistics described district characteristics. Political commitment to nutrition was high in both reduced and non‐reduced districts. Respondents from reduced districts were more likely to define commitment to nutrition as an optimal implementation of policy, whereas those from non‐reduced districts focused more on financial commitment. Regarding coherence, respondents from reduced compared to non‐reduced districts were more likely to report the optimal implementation of multi‐sectoral nutrition planning meetings, using data to assess plans and progress in nutrition outcomes and integration of nutrition into the agriculture sector. In contrast, respondents from non‐reduced districts more often reported challenges in their relationships with national‐level stakeholders and nutrition and/or monitoring and evaluation capacities. Enhancing the integration of nutrition in different sectors and improving mid‐level actors' capacity to plan and advocate for nutrition programming may contribute to reductions in stunting. Key messages: Understanding the lens through which policy implementers at subnational levels view multi‐sectoral nutrition strategies and their role in these strategies provides useful information on the facilitators and constraints of implementation for nutrition actions.Differences in leadership and responsiveness to prioritise nutrition at the subnational levels are important in decentralised governance systems where responsibilities in nutrition planning, coordination and implementation shift to mid‐level actors.Mainstreaming nutrition responsibilities across sectors and administrative levels requires investments in capacities to plan, monitor and advocate for multi‐sectoral nutrition programming, including for mid‐level actors. [ABSTRACT FROM AUTHOR]

Background: Early identification and treatment of chronic disease is associated with better clinical outcomes, lower costs, and reduced hospitalisation. Primary care is ideally placed to identify patients at risk of, or in the early stages of, chronic disease and to implement prevention and early intervention measures. This paper evaluates the implementation of a technological intervention called Future Health Today that integrates with general practice EMRs to (1) identify patients at-risk of, or with undiagnosed or untreated, chronic kidney disease (CKD), and (2) provide guideline concordant recommendations for patient care. The evaluation aimed to identify the barriers and facilitators to successful implementation. Methods: Future Health Today was implemented in 12 general practices in Victoria, Australia. Fifty-two interviews with 30 practice staff were undertaken between July 2020 and April 2021. Practice characteristics were collected directly from practices via survey. Data were analysed using inductive and deductive qualitative analysis strategies, using Clinical Performance - Feedback Intervention Theory (CP-FIT) for theoretical guidance. Results: Future Health Today was acceptable, user friendly and useful to general practice staff, and supported clinical performance improvement in the identification and management of chronic kidney disease. CP-FIT variables supporting use of FHT included the simplicity of design and delivery of actionable feedback via FHT, good fit within existing workflow, strong engagement with practices and positive attitudes toward FHT. Context variables provided the main barriers to use and were largely situated in the external context of practices (including pressures arising from the COVID-19 pandemic) and technical glitches impacting installation and early use. Participants primarily utilised the point of care prompt rather than the patient management dashboard due to its continued presence, and immediacy and relevance of the recommendations on the prompt, suggesting mechanisms of compatibility, complexity, actionability and credibility influenced use. Most practices continued using FHT after the evaluation phase was complete. Conclusions: This study demonstrates that FHT is a useful and acceptable software platform that provides direct support to general practice in identifying and managing patients with CKD. Further research is underway to explore the effectiveness of FHT, and to expand the conditions on the platform. [ABSTRACT FROM AUTHOR]

Background: People with severe mental illness (SMI) experience higher rates and poorer outcomes of physical long‐term conditions (LTCs). The management of SMI and LTCs is highly complex and many people with SMI rely on informal carers for support, which may lead to high levels of caregiver burden, and caregiver burnout. Caregiver burnout can result in poor health outcomes for informal carers and a reduction in the quality of care they are able to provide. Therefore, it is important to understand the caring experience to identify and address factors that contribute to burden and burnout. Methods: This paper reports a secondary qualitative analysis of semistructured interviews and focus groups conducted with informal carers of people who have coexisting SMI and LTCs. We recruited 12 informal carers in England between December 2018 and April 2019. The transcripts were coded and analysed thematically. Results: We identified two overarching themes and five subthemes. The themes included 'Fighting on all fronts: Mounting strain between demands and resources', which described the challenge of providing care in the context of coexisting SMI and LTCs, and 'Safekeeping: The necessity of chronic hypervigilance', which captured how informal carers' roles were defined by managing high‐risk situations, leading to hypervigilance and paternalistic approaches to care. Conclusion: The experience of informal carers for people with SMI and coexisting LTCs is marked by limited access to support and the management of significant risk, which could contribute to high caregiver burden. Further primary research is needed to understand how the experiences of the caregiver role for people with SMI and LTCs influence caregiver burden. Patient or Public Contribution: Our PPI panel DIAMONDS Voice provided guidance on this study from conception, design and development of interview guides and recruitment materials to final write‐up. DIAMONDS Voice consists of service users and carers who have experience of SMI and LTCs. Three carer members reviewed the final manuscript, and two are credited as authors. [ABSTRACT FROM AUTHOR]

Objectives: Bowel urgency is an impactful core symptom of ulcerative colitis (UC). Patient-reported outcome (PRO) questionnaires have been developed and used to assess the patient experience of this important symptom. The objective of this paper is to present evidence from qualitative research conducted to support the use and interpretation of select PRO questionnaires to assess bowel urgency related to the UC patient experience. Methods: Qualitative interviews were conducted with ten adults with a clinician-confirmed diagnosis of moderately to severely active UC. Interviews aimed to document patient interpretation of modified recall periods for the Urgency Numeric Rating Scale (Urgency NRS), two global assessments (i.e., the Patient Global Impression of Severity [PGIS] and Patient Global Impression of Change [PGIC]), and four items (Items 11, 16, 23, and 26) of the Inflammatory Bowel Disease Questionnaire (IBDQ), and explore the patient perspective of meaningful change on these questionnaires. Results: Both modified Urgency NRS versions (with 7-day or 3-day recall period) were interpreted as intended by most patients (≥ 88.9%), and slightly more than half of patients (60.0%) reported that the 7-day recall period was more relevant to their bowel urgency experience. Patients reported thinking of bowel urgency (≥ 80.0%) or bowel urgency-related accidents (70.0% of patients) when interpreting the global assessments and IBDQ items. Most patients reported a 1- to 3-point change as the smallest meaningful improvement that would be meaningful on the Urgency NRS (similar to findings on other questionnaires). Conclusion: Adults with UC can understand and respond to the Urgency NRS with modified recall periods (i.e., 7-day or 3-day), interpret the conceptual content of the PGIS, PGIC, and select IBDQ items to be inclusive of bowel urgency and bowel urgency-related accidents, and select answers representing meaningful improvements on the Urgency NRS, PGIS, PGIC, and IBDQ item response scales. These results further contribute patient-centered data to existing UC and bowel urgency research. [ABSTRACT FROM AUTHOR]

Background: Healthcare workers (HCWs) in the United Kingdom (UK) have faced many challenges during the COVID-19 pandemic, some of these arising out of their social positions. Existing literature explicating these challenges (e.g., lack of appropriate PPE, redeployment, understaffing) have highlighted inequities in how these have been experienced by HCWs based on ethnicity, gender or, job role. In this paper, we move a step ahead and examine how the intersection of these social positions have impacted HCWs' experiences of challenges during the pandemic. Methods: We collected qualitative data, using interviews and focus groups, from 164 HCWs from different ethnicities, gender, job roles, migration statuses, and regions in the United Kingdom (UK) between December 2020 and July 2021. Interviews and focus groups were conducted online or by telephone, and recorded with participants' permission. Recordings were transcribed and a hybrid thematic analytical approach integrating inductive data-driven codes with deductive ones informed by an intersectional framework was adopted to analyse the transcripts. Results: Thematic analysis of transcripts identified disempowerment, disadvantage and, discrimination as the three main themes around which HCWs' experiences of challenges were centred, based on their intersecting identities (e.g., ethnicity gender, and/or migration status). Our analysis also acknowledges that disadvantages faced by HCWs were linked to systemic and structural factors at the micro, meso and macro ecosystemic levels. This merging of analysis which is grounded in intersectionality and considers the ecosystemic levels has been termed as 'intrasectionalism'. Discussion: Our research demonstrates how an intrasectional lens can help better understand how different forms of mutually reinforcing inequities exist at all levels within the healthcare workforce and how these impact HCWs from certain backgrounds who face greater disadvantage, discrimination and disempowerment, particularly during times of crisis like the COVID-19 pandemic. [ABSTRACT FROM AUTHOR]

Background: Crisis Resolution Teams (CRTs) offer home-based care for people in mental health crisis, as an alternative to hospital admission. The success of CRTs in England has been variable. In response to this, the CRT Optimization and RElapse prevention (CORE) study developed and trialled a 12-month Service Improvement Programme (SIP) based on a fidelity model. This paper describes a qualitative evaluation of the perspectives of CRT staff, managers, and programme facilitators. We identify barriers and facilitators to implementation, and mechanisms by which service improvements took place. Methods: Managers and staff from six purposively sampled CRTs were interviewed, as well as six facilitators who were employed to support the implementation of service improvement plans. Semi-structured focus groups and individual interviews were conducted and analysed using thematic analysis. Findings: A majority of participants viewed all components of the SIP as helpful in improving practice, although online resources were under-used. Perceived barriers to implementation centred principally around lack of staff time and ownership. Support from both senior staff and facilitators was essential in enabling teams to undertake the work associated with the SIP. All participating stakeholder groups reported that using the fidelity model to benchmark their CRT work to best practice and feel part of a 'bigger whole' was valuable. Conclusion: CRT staff, managers and programme facilitators thought that a structured service improvement programme helped to increase fidelity to a best practice model. Flexibility (from all stakeholders) was key to enable service improvement actions to be manageable within time- and resource-poor teams. [ABSTRACT FROM AUTHOR]

This article traces the origin, sustenance and implications of a persistent rumour that is responsible for low measles mumps and rubella (MMR) vaccination uptake in the Somali diaspora in a number of countries across the globe. The rumour stipulates that the MMR vaccine – the silent shot – causes autism spectrum disorder (ASD). Although the association between MMR and ASD is non-causal, and various public health initiatives have promoted health information campaigns, the rumour continues to circulate in the Somali diaspora in many countries, including Sweden. This paper shows that there are valid reasons for this. The findings from this paper draw on a systematic scoping review and qualitative interview data from Sweden. The results show that the Somali community experiences higher than average rates of ASD compared to the general population. Moreover, ASD does not exist in the Somali language or their home country, is considered a Western disease that only affects Somali children in the diaspora, and is a highly stigmatised disease. Also, the Somali diaspora has had negative experiences with ASD diagnosis and care. The rumour has been sustained by the absence of an answer to their ASD fear and through active diaspora networks on social media. The network that surrounds the rumour has arguably further helped to create an epistemic community for a community whose concerns have been silenced. [ABSTRACT FROM AUTHOR]

Background: The implementation science literature acknowledges a need for engagement of key stakeholders when designing, delivering and evaluating implementation work. To date, the literature reports minimal or focused stakeholder engagement, where stakeholders are engaged in either barrier identification and/or barrier prioritisation. This paper begins to answer calls from the literature for the development of tools and guidance to support comprehensive stakeholder engagement in implementation research and practice. The paper describes the systematic development of the Implementation‐STakeholder Engagement Model (I‐STEM) in the context of an international, large‐scale empirical implementation study (ImpleMentAll) aimed at evaluating the effectiveness of a tailored implementation toolkit. The I‐STEM is a sensitising tool that defines key considerations and activities for undertaking stakeholder engagement activities across an implementation process. Methods: In‐depth, semistructured interviews and observations were conducted with implementers who were tailoring implementation strategies to integrate and embed internet‐based cognitive behavioural therapy (iCBT) services in 12 routine mental health care organisations in nine countries in Europe and Australia. The analytical process was informed by principles of first‐ and third‐generation Grounded Theory, including constant comparative method. Results: We conducted 55 interviews and observed 19 implementation‐related activities (e.g., team meetings and technical support calls). The final outcome of our analysis is expressed in an initial version of the I‐STEM, consisting of five interrelated concepts: engagement objectives, stakeholder mapping, engagement approaches, engagement qualities and engagement outcomes. Engagement objectives are goals that implementers plan to achieve by working with stakeholders in the implementation process. Stakeholder mapping involves identifying a range of organisations, groups or people who may be instrumental in achieving the engagement objectives. Engagement approaches define the type of work that is undertaken with stakeholders to achieve the engagement objectives. Engagement qualities define the logistics of the engagement approach. Lastly, every engagement activity may result in a range of engagement outcomes. Conclusion: The I‐STEM represents potential avenues for substantial stakeholder engagement activity across key phases of an implementation process. It provides a conceptual model for the planning, delivery, evaluation and reporting of stakeholder engagement activities. The I‐STEM is nonprescriptive and highlights the importance of a flexible, iterative approach to stakeholder engagement. It is developmental and will require application and validation across a range of implementation activities. Patient or Public Contribution: Patient contribution to ImpleMentAll trial was facilitated by GAMIAN‐Europe at all stages—from grant development to dissemination. GAMIAN‐Europe brings together a wide variety of patient representation organisations (local, regional and national) from almost all European countries. GAMIAN‐Europe was involved in pilot testing the ItFits‐toolkit and provided their views on the various aspects, including stakeholder engagement. Patients were also represented in the external advisory board providing support and advice on the design, conduct and interpretation of the wider project, including the development of the ItFits‐toolkit. Trial registration: ClinicalTrials.gov NCT03652883. Retrospectively registered on 29 August 2018. [ABSTRACT FROM AUTHOR]

Background: Experiences of living with and seeking care for multimorbidity is a relatively under-researched field. By analysing experiences of people with multimorbidity, caregivers and care professionals, we can better understand the complex care needs of those with multimorbidity and identify improvements to care management. This paper reports findings from research that elicited the views of key stakeholders to inform future care practice and policy. Aim: To elicit care recipient and care provider views to understand the care needs of those living with and seeking care for multimorbidity. Method: A qualitative interview study using purposive sampling of those living with and providing care in multimorbidity. Results: Increased support to those with multimorbidity and caregivers to navigate care systems was advocated. Establishing trusting care relationships featured prominently in participants accounts. Fragmented care, inadequate coordination and poor communication between care providers, were identified as system-wide challenges. There was agreement that integrated care models were needed, which delivered personalised care, such as shared decision-making, choice in care options and accessing services, and individualised care plans. Conclusion: We found significant agreement among stakeholders on care need and management in multimorbidity. Understanding the experiences of those with multimorbidity, caregivers and care professionals, can inform future improvements in care management. [ABSTRACT FROM AUTHOR]

Background: Partnerships between Higher Education Institutions (HEIs) in the global north and south have commonly been used as a vehicle to drive global health research and initiatives. Among these initiatives, include health system strengthening, research capacity building, and human resource training in developing countries. However, the partnership functioning of many global north-south partnerships still carry legacies of colonialism through unrecognized behavior patterns, attitudes, and belief systems in how they function. Even with research literature calling for a shift from equality to equity in the functioning of these partnerships, many still struggle with issues of complex and unspoken power dynamics. To understand the successes and challenges of north-south partnerships, this paper explored partnership development and functioning of a northern and multi-southern HEIs partnership focused on nutrition education and research. Methods: A qualitative research approach was used; data were collected through in-depth interviews (IDIs) with questions developed from the Bergen Model of Collective Functioning (BMCF). Thirteen IDIs were conducted with partners from all institutions including stakeholders. Findings: The partnership was built on the foundation of experiences and lessons of a previous partnership. Partners used these experiences and lessons to devise strategies to improve partnership inputs, communication, leadership, roles and structures, and maintenance and communication tasks. However, these strategies had an impact on partnership functioning giving rise to issues of inequitable power dynamics. The northern partner had two roles: one as an equal partner and another as distributor of project funds; this caused a conflict in roles for this partner. The partners distinguished themselves according to partner resources – two partners were named implementing partners and two named supportive partners. Roles and partner resources were the greatest contributors to power imbalances and caused delays in project activities. Conclusion: Using the BMCF to examine partnership dynamics illuminated that power imbalances caused a hierarchical stance in the partnership with northern partners having overall control and power of decision-making in the partnership. This could impact the effectiveness and sustainability of project in the southern institutions going forward. [ABSTRACT FROM AUTHOR]

Copyright of BMC Nursing is the property of BioMed Central and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Background: Adaptation to climate change (CC) is a priority for Small Island Developing States (SIDS) in the Caribbean, as these countries and territories are particularly vulnerable to climate-related events. Primary health care (PHC) is an important contributor to CC adaptation. However, knowledge on how PHC is prepared for CC in Caribbean SIDS is very limited. The aim of this paper is to discuss health system adaptation to climate change, with a focus on PHC. Methods: We explored the perspectives of PHC professionals in Dominica on PHC adaptation to climate change. Focus group discussions (FGDs) were conducted in each of the seven health districts in Dominica, a Caribbean SIDS, between November 2021 and January 2022. The semi-structured interview guide was based on the Essential Public Health Functions: assessment, access to health care services, policy development and resource allocation. Data coding was organized accordingly. Results: Findings suggest that health care providers perceive climate change as contributing to an increase in NCDs and mental health problems. Climate-related events create barriers to care and exacerbate the chronic deficiencies within the health system, especially in the absence of high-level policy support. Healthcare providers need to take a holistic view of health and act accordingly in terms of disease prevention and health promotion, epidemiological surveillance, and ensuring the widest possible access to healthcare, with a particular focus on the environmental and social determinants of vulnerability. Conclusion: The primary health care system is a key stakeholder in the design and operationalization of adaptation and transformative resilience. The Essential Public Health Functions should integrate social and climate and other environmental determinants of health to guide primary care activities to protect the health of communities. This study highlights the need for improved research on the linkages between climate events and health outcomes, surveillance, and development of plans informed by contextual knowledge in the SIDS. [ABSTRACT FROM AUTHOR]

Background: The risk of developing chronic postsurgical pain (CPSP) in youth is related to psychological factors, including preoperative anxiety, depression, patient/caregiver pain catastrophizing, and poor self-efficacy in managing pain. While interventions exist to address these factors, they are generally brief and educational in nature. The current paper details patient partner feedback on the development of a psychologist-delivered perioperative psychological program (PPP) designed to identify and target psychological risk factors for CPSP and improve self-efficacy in managing pain. Methods: Qualitative interviews were conducted with two patients and their caregivers to discuss their surgical and pain management experience and to advise on components of the PPP. Results: Reflexive thematic analysis of interviews generated the following themes, which were incorporated into the content and implementation of the PPP: caregiver involvement, psychological and physical strategies for pain management, biopsychosocial pain education, intervention structure, and supporting materials. Conclusions: The development of a novel psychologist-led PPP is a promising approach to mitigate mental health risks associated with pediatric CPSP and potentially boost postoperative outcomes and family wellbeing. Integrating patient partner feedback ensures that the PPP is relevant, acceptable, and aligned with the needs and preferences of the patients it is designed to serve. [ABSTRACT FROM AUTHOR]

Background: People with Parkinson's disease (PD) do not always access specialist outpatient services in a timely manner in Ireland. The perspectives of people living with PD, relating to service access, are largely absent in the existing literature. Aim: To explore experiences of PD service access for people living with PD, using a qualitative approach. Methods: Purposive maximum variation sampling was used. Semi‐structured telephone interviews were conducted with 25 service users, including people with PD (n = 22) and supporting carers (n = 3). Informed consent was obtained from all participants. Interviews ranged in duration from 30 to 90 min. Data were managed in NVivo 12 and interpreted inductively using thematic analysis. The researchers were reflexive throughout the research process. The Consolidated Criteria for Reporting Qualitative Research checklist was employed to maximise transparency. Results: The findings highlight several key barriers to and facilitators of equitable and timely service access. Three key themes were identified comprising experiences of PD service access including 'geographical inequity', 'discriminatory practices', and 'public and private system deficits'. Together, these themes illustrate how a two‐tiered and under‐resourced health system lacks capacity, in terms of infrastructure and workforce, to meet PD needs for both public and private patients in Ireland. Conclusions: These findings point to problems for PD care, relating to (i) how the health system is structured, (ii) the under‐provision and under‐resourcing of specialist outpatient PD services, including medical, nursing, and multidisciplinary posts, and (iii) insufficient PD awareness education and training across health settings. The findings also show that telemedicine can provide opportunities for making access to certain aspects of PD care more flexible and equitable, but the feasibility and acceptability of technology‐enabled care must be assessed on an individual basis. Implications for policy, practice and research are discussed. Patient or Public Contribution: The design and conduct of this study were supported by an expert advisory group (EAG) of 10 co‐researchers living with PD. The EAG reviewed the interview schedule and the protocol for this study and provided detailed feedback from their perspective, to improve the methods, including the interview approach. The group also reviewed the findings of the study and contributed their insights on the meaning of the findings, which fed into this paper. [ABSTRACT FROM AUTHOR]

Maternal mental health (MMH) conditions and infant malnutrition are both major global public health concerns. Despite a well-established link between the two, many nutrition programmes do not routinely consider MMH. New World Health Organization (WHO) malnutrition guidelines do, however, emphasise MMH. To inform guideline rollout, we aimed to assess the feasibility and acceptability of MMH assessments in nutrition programmes in low-resource settings. Ten semi-structured interviews were conducted with international key informants who work on nutrition programmes or MMH research. Interview transcripts were coded using subthemes derived from the key points discussed. The benefits and risks were highlighted. These included ethical dilemmas of asking about MMH if local treatment services are suboptimal. Commonly reported challenges included governance, staff training and finance. Community and programme staff perceptions of MMH were primarily negative across the different settings. Many points were raised for improvements and innovations in practice, but fundamental developments were related to governance, care pathways, advocacy, training, funding and using existing community networks. Future implementation research is needed to understand whether assessment is safe/beneficial (as it is in other settings) to promote MMH screening. Current service providers in low-resource settings can undertake several steps, as recommended in this paper, to improve the care offered to mothers and infants. [ABSTRACT FROM AUTHOR]

Training staff and volunteers is an important aspect of successful program implementation. This paper follows Part A of an evaluation of the Special Olympics Canada (SOC) Coaching Young Athletes Training course. Consistent with Kirkpatrick's four-level model of training evaluation, Part A evaluated program leaders' reactions to (level 1) and immediate learning from (level 2) the training. This Part B paper covers "on the job" behavior (level 3). In-depth semi-structured interviews were conducted with youth program leaders (n = 11) from eight provinces. Overall, participants felt that more training related to working with children with autism and promoting positive athlete behavior was needed. The findings also lead us to suggest that program leaders need to develop a more fulsome understanding of how to foster skill mastery, including how to practice the same skill in many and varied ways. [ABSTRACT FROM AUTHOR]

Background: Nursing education starts in the classroom environment with a focus on the nurse educator-nursing student relationship. 'Presence' is defined as "a practice where the caregiver relates her/himself to the other in an attentive and dedicated way, by doing so learns to see what is at stake for the other; from desires to fear, and, in connection with this, come to understand what could be done in this particular situation and who she/he can be for the other". 'Presence' forms an integral part of the nursing profession and the value thereof should be facilitated during teaching and learning. Reflective practices may offer a teaching–learning strategy to facilitate presence in nursing students by nurse educators in large class settings. Having large classes presents challenges including from nurse educators' lack of knowledge about alternative teaching approaches; time demands for designing, implementing and testing new teaching methods; a lack of confidence in implementing new teaching approaches in the classroom; selecting and grading assessments; as well as feelings of discomfort and anxiety. A model to facilitate presence through reflective practices has already been developed and published by the present authors. The model relies on well-established steps in theory development covering concept analysis, model development and description (published in two papers by the present researchers) and model evaluation (the subject of this paper). The evaluation was carried out by a panel of experts and nursing participants. Methods: An explorative and descriptive qualitative design was followed. The developed model was evaluated and refined in two steps (covered in this paper). In Step 1, the model was evaluated by a panel of experts in model development, reflective practices and presence. The panel used critical reflection resulting in the refinement of the model. Step 2 involved an empirical phase where the model was evaluated by participants through participatory evaluation. Participants were selected through purposive sampling. Data collection methods included online semi-structured focus group interviews with nurse educators and virtual World Café sessions with nursing students. Content analysis was done through open coding. Results: Five themes emerged from the empirical phase, namely: Theme 1: understanding of the model; Theme 2: benefits of the model; Theme 3: limitations of the model; Theme 4: pre-existing conditions needed for successful implementation of the model; and Theme 5: recommendations for further development of the model. Conclusions: The results produced a refined model to be implemented into the curriculums of undergraduate, postgraduate and continuous professional development programmes across nursing education institutions. This model will significantly contribute to the body of knowledge and increase nurses' awareness of presence by transforming the way they feel, think, care and act in practice, which contributes to personal and professional development. [ABSTRACT FROM AUTHOR]

Introduction: Maternal glycemia is associated with pregnancy outcomes. Thus, supporting the self-management experiences and preferences of pregnant women with type 1 and type 2 diabetes is crucial to optimize glucose control and perinatal outcomes. Research design and methods: This paper describes the mixed methods integration of a sequential comparative case study. The objectives are threefold, as we integrated the quantitative and qualitative data within the overall mixed methods design: (1) to determine the predictors of glycemic control during pregnancy; (2) to understand the experience and diabetes self-management support needs during pregnancy among women with pre-existing diabetes; (3) to assess how self-management and support experiences helpe to explain glycemic control among women with pre-existing diabetes in pregnancy. The purpose of the mixing was to integrate the quantitative and qualitative data to develop rich descriptive cases of how diabetes self-management and support experiences and preferences in women with type 1 and type 2 diabetes during pregnancy help explain glucose control. A narrative approach was used to weave together the statistics and themes and the quantitative results were integrated visually alongside the qualitative themes to display the data integration. Results: The quantitative results found that women achieved "at target" glucose control (mean A1C of the cohort by the third visit: 6.36% [95% Confidence Interval 6.11%, 6.60%]). The qualitative findings revealed that feelings of fear resulted in an isolating and mentally exhausting pregnancy. The quantitative data also indicated that women reported high levels of self-efficacy that increased throughout pregnancy. Qualitative data revealed that women who had worked hard to optimize glycemia during pregnancy were confident in their self-management. However, they lacked support from their healthcare team, particularly around self-management of diabetes during labour and delivery. Conclusions: The achievement of optimal glycemia during pregnancy was motivated by fear of pregnancy complications and came at a cost to women's mental health. Mental health support, allowing women autonomy, and the provision of peer support may improve the experience of diabetes self-management during pregnancy. Future work should focus on developing, evaluating and implementing interventions that support these preferences. [ABSTRACT FROM AUTHOR]

Background: Kidney disease is a progressive, debilitating condition. Patients experience challenging physical and psychological symptoms and are at increased risk of anxiety, depression, and poor mental wellbeing. Access to specialist psychological or social support is limited, with inadequate provision of psychosocial support available across UK renal units. The COSMIC study (examining the acceptability and feasibility of the Compassionate Mindful Resilience programme for adult patients with chronic kidney disease) aimed to support a new service development project, in partnership with Kidney Care UK, by implementing the Compassionate Mindful Resilience (CMR) programme, developed by MindfulnessUK, and explore its feasibility for patients with stage 4 or 5 kidney disease and kidney transplant recipients. This paper reports on the qualitative exploratory work which examined the experiences of study participants, their adherence to practice, and the acceptability of the intervention. Method: Participants (n = 19) took part in semi-structured interviews, which were transcribed, coded, and thematically analysed. Results: Three themes (and nine subthemes) were reported: experiences of the CMR programme that facilitated subjective benefit, participants' lived and shared experiences, and the practicalities of CMR programme participation. All participants reported that they found taking part in the CMR programme to be a beneficial experience. Conclusion: The CMR programme was found to be an acceptable intervention for people living with kidney disease and provided tools and techniques that support the mental health and wellbeing of this patient group. Further qualitative exploration into participant experience should be integrated within future trials of this intervention. [ABSTRACT FROM AUTHOR]

Background: People with lived‐experience of the phenomenon under investigation are seldom involved in the analysis of qualitative data, and there exists little guidance for those wishing to involve contributors at this stage of research. Aims: To critically reflect on the process of involving people with lived‐experience in a thematic analysis and to offer direction to other researchers. Methods: An individual with lived‐experience of residing in prison contributed to a co‐analysis of qualitative data using thematic analysis. This paper reports on involvement at each stage of a thematic analysis and follows an established reporting checklist. Results: A number of challenges and benefits were encountered in the process of co‐analysing the data. These are discussed in relation to previous research and how to overcome the challenges encountered. Conclusions: The paper concludes by giving recommendations and guidance for future researchers wishing to involve people with lived‐experience in qualitative data analysis. [ABSTRACT FROM AUTHOR]

Affected by the normalization of the COVID-19 pandemic, people's lives are subject to many restrictions, and they are under enormous psychological and physical pressure. In this situation, health information may be a burden and cause of anxiety for people; thus, the refusal of health information occurs frequently. Health-information-avoidance behavior has produced potential impacts and harms on people's lives. Based on more than 120,000 words of textual data obtained from semi-structured interviews, summarizing a case collection of 55 events, this paper explores the factors and how they combine to lead to avoidance of health information. First, the influencing factors are constructed according to the existing research, and then the fuzzy set qualitative comparative analysis (fsQCA) method is used to discover the configuration relationship of health-information-avoidance behavior. The results show that the occurrence of health-information avoidance is not the result of a single factor but the result of a configuration of health-information literacy, negative emotions, perceived information, health-information presentation, cross-platform distribution, and the network information environment. These findings provide inspiration for reducing the adverse consequences of avoiding health information and improving the construction of health-information service systems. [ABSTRACT FROM AUTHOR]

Context: Patient experience is an important component of high‐quality care and is linked to improved clinical outcomes across a range of different conditions. Patient‐reported experience measures (PREMs) are psychometrically validated instruments designed to identify where strengths and vulnerabilities in care exist. Currently, there is no validated instrument available to measure patient experience among people aged over 65 years attending the emergency department (ED). Objective: This paper aims to describe the process of generating, refining and prioritising candidate items for inclusion in a new PREM measuring older adults' experiences in ED (PREM‐ED 65). Design: One hundred and thirty‐six draft items were generated via a systematic review, interviews with patients and focus groups with ED staff exploring older adults' experiences in the ED. A 1‐day multiple stakeholder workshop was then convened to refine and prioritise these items. The workshop entailed a modified nominal groups technique exercise comprised of three discrete parts—(i) item familiarisation and comprehension assessment, (ii) initial voting and (iii) final adjudication. Setting and Participants: Twenty‐nine participants attended the stakeholder workshop, conducted in a nonhealthcare setting (Buckfast Abbey). The average age of participants was 65.6 years. Self‐reported prior experiences of emergency care among the participants included attending the ED as a patient (n = 16, 55.2%); accompanying person (n = 11, 37.9%) and/or as a healthcare provider (n = 7, 24.1%). Results: Participants were allocated time to familiarise themselves with the draft items, suggest any improvements to the item structure or content, and suggest new items. Two additional items were proposed by participants, yielding a total of 138 items for prioritisation. Initial prioritisation deemed most items 'critically important' (priority 7–9 out of 9, n = 104, 75.4%). Of these, 70 items demonstrated suitable inter‐rater agreement (mean average deviation from the median < 1.04) and were recommended for automatic inclusion. Participants then undertook final adjudication to include or exclude the remaining items, using forced choice voting. A further 29 items were included. Thirty‐nine items did not meet the criteria for inclusion. Conclusions: This study has generated a list of 99 prioritised candidate items for inclusion in the draft PREM‐ED 65 instrument. These items highlight areas of patient experience that are particularly important to older adults accessing emergency care. This may be of direct interest to those looking to improve the patient experience for older adults in the ED. For the final stage of development, psychometric validation amongst a real‐world population of ED patients is now planned. Patient and Public Contribution: Initial item generation was informed using qualitative research, including interviews with patients in the ED. The opinions of patients and members of the public were integral to achieving outcomes from the prioritisation meeting. The lay chair of the Royal College of Emergency Medicine participated in the meeting and reviewed the results of this study. [ABSTRACT FROM AUTHOR]

Introduction: Rehabilitation practices that adopt a strengths-based perspective are known as transdisciplinary evidence-based practices. However, little is known about whether and how such a perspective is experienced by people living with a neurological condition during their rehabilitation. Objective: To explore how core components of a strengths-based rehabilitation perspective (i.e., hope, self-determination, and mobilization of personal strengths) are envisioned and experienced in outpatient-based rehabilitation by adults living with multiple sclerosis or spinal cord injury. Methods: A descriptive exploratory study with mixed data collection was conducted with adults living with spinal cord injury (n = 9) or multiple sclerosis (n = 11). Participants completed two semi-structured interviews and the Recovery Promoting Relationship Scale (RPRS). The qualitative analysis relied on a hybrid inductive and deductive approach. Results: Four themes depict a strengths-based rehabilitation perspective: (1) The mobilization of personal strengths (e.g., what a strengths-based perspective could offer); (2) hope (e.g., what hinders hope in rehabilitation); (3) accessing information for decision-making (e.g., navigating the system); and (4) exercising self-determination (e.g., influencing the length or intensity of rehabilitation services). Conclusions: Hope, self-determination, and the mobilization of personal strengths are of the utmost importance throughout the rehabilitation of adults living with multiple sclerosis and or spinal cord injury. This paper raises awareness about elements specific to the contexts in which services are offered or to the therapeutic relationships influencing how these three strength-based constructs are envisioned and experienced in rehabilitation. [ABSTRACT FROM AUTHOR]

Background: Partnership research practices involving various stakeholder groups are gaining ground. Yet, the research community is still exploring how to effectively coproduce research together. This study describes (a) key programme developments in the creation of a 6‐year partnership research programme in Sweden, and (b) explores the hopes, expectations, and experiences of patient innovators (i.e., individuals with lived experience as patients or caregivers who drive health innovations) and researchers involved in the programme during the first years. Methods: We conducted a prospective longitudinal qualitative study spanning the first 2 years of the programme. Data consisted of meeting protocols and interviews with 14 researchers and 6 patient innovators; 39 interviews were carried out in three evenly‐spaced rounds. We identified significant events and discussion themes in the meeting protocols and analyzed the interviews using thematic analysis, applying a cross‐sectional recurrent approach to track changes over time. Findings: Meeting protocols revealed how several partnership practices (e.g., programme management team, task forces, role description document) were cocreated, supporting the sharing of power and responsibilities among programme members. Based on the analysis of interviews, we created three themes: (1) paving the path to a better tomorrow, reflecting programme members' high expectations; (2) going on a road trip together, reflecting experiences of finding new roles and learning how to cocreate; (3) finding the tempo: from talking to doing, reflecting experiences of managing challenges and becoming productive as a team. Conclusions: Our findings suggest that sharing, respecting, and acknowledging each other's experiences and concerns helps build mutual trust and shape partnership practices. High expectations beyond research productivity suggest that we need to consider outcomes at different levels, from the individual to society, when evaluating the impact of partnership research. Patient or Public Contribution: The research team included members with formal experiences as researchers and members with lived experiences of being a patient or informal caregiver. One patient innovator coauthored this paper and contributed to all aspects of the research, including the design of the study; production of data (as interviewee); interpretation of findings; and drafting the manuscript. [ABSTRACT FROM AUTHOR]

Background: The integration of Primary Care (PC) into broader health systems has been a goal in jurisdictions around the world. Efforts to achieve integration at the meso-level have drawn particular attention, but there are few actionable recommendations for how to enact a 'pro-integration culture' amongst government and PC governance bodies. This paper describes pragmatic integration activity undertaken by meso-level participants in Alberta, Canada, and suggests ways this activity may be generalizable to other health systems. Methods: 11 semi-structured interviews with nine key informants from meso-level organizations were selected from a larger qualitative study examining healthcare policy development and implementation during the COVID-19 pandemic. Selected interviews focused on participants' experiences and efforts to 'do' integration as they responded to Alberta's first wave of the Omicron variant in September 2021. An interpretive descriptive approach was used to identify repeating cycles in the integration context, and pragmatic integration activities. Results: As Omicron arrived in Alberta, integration and relations between meso-level PC and central health system participants were tense, but efforts to improve the situation were successfully made. In this context of cycling relationships, staffing changes made in reaction to exogenous shocks and political pressures were clear influences on integration. However, participants also engaged in specific behaviours that advanced a pro-integration culture. They did so by: signaling value through staffing and resource choices; speaking and enacting personal and group commitments to collaboration; persevering; and practicing bi-directional communication through formal and informal channels. Conclusions: Achieving PC integration involves not just the reactive work of responding to exogenous factors, but also the proactive work of enacting cultural, relationship, and communication behaviors. These behaviors may support integration regardless of the shocks, staff turnover, and relational freeze-thaw cycles experienced by any health system. [ABSTRACT FROM AUTHOR]

Orthodontic treatment is a common dental treatment. A complete treatment often takes several years and is costly. In order to increase the degree of satisfaction and reduce the gap between the expectations of the patient and the limitations of orthodontics, orthodontists and patients should have sufficient communication. A simulation system can provide a good channel for communication between orthodontists and patients. This paper proposes a 3D dentist–patient communication system for the simulation of orthodontics in advance. The system collects the clinical paradigms of orthodontic cases, which must contain photos from before, during, and after maxillofacial treatment. This research simulates treatment processes by tuning a 3D virtual model of the oral and maxillofacial areas, including the face, mouth, and teeth, to demonstrate the processes of clinical paradigms. These 3D models could be edited and synthesized to generate new 3D models for simulation with the 3DS Max tool. In addition, the proposed system provides a function for the orthodontist to manually operate the 3D virtual model, such as tooth arrangement, morphing of the gums with movement of the teeth, the placement (attachment) of arch-wires and brackets, and changes of facial appearance. The orthodontist can demonstrate the treatment processes, show movements of the teeth, and answer possible questions from the patient about the treatment processes by using the 3D model. To show the effectiveness of the proposed system, a questionnaire about the system was also used to demonstrate its acceptance, usability, and validity. Qualitative interviews with dentists and questionnaires for patients about the system are both performed. The results showed that the proposed system is an effective vehicle for communication between patients and orthodontists. [ABSTRACT FROM AUTHOR]

Background: The use of patient-reported outcome measures (PROM) and patient-reported experience measures (PREM) provide health providers with valuable feedback on how to improve clinical care and patient outcomes. This paper describes a qualitative study that was conducted to learn about factors influencing the well-being of people living with HIV (PLHIV) in Finland. The findings will be used to develop themes for HIV-specific PROM and PREM questions. Methods: PROMs and PREMs were developed by the Finnish Institute for Health (THL) as a part of a project to develop a national quality-of-care registry for HIV. The study aimed to identify issues and concerns among people living with HIV (PLHIV) that influence their well-being (PROMs) and their experiences in the healthcare system (PREMs). The data were collected through face-to-face in-depth interviews and focus group discussions based on open-ended and semi-structured questions. The data were analyzed using thematic analysis. Results: The assessment identified the following PROMs of concern: psychological well-being, concerns about stigma, physical health, social well-being, sexual well-being, medication uptake, managing other medications with antiretrovirals (ARVs), and growing old. The assessment identified the following PREMs: helping patients understand their own health status, proving an opportunity for patients to discuss physical health, psychological and sexual well-being, supporting the uptake of ARVs, assisting patients with medication use, showing compassion towards patients, and empowering patients against stigma. Conclusion: These findings of the study can be used to develop domain-specific PROM and PREM questions for the national HIV quality care register. [ABSTRACT FROM AUTHOR]

Introduction: Patient safety has been an undervalued component of quality healthcare but is a challenging area of research. Ultrasound is the most common imaging modality in the world. Research on patient safety in ultrasound is generally focused on bioeffects and safe operation of ultrasound equipment. However, other safety issues exist in practice that warrant consideration. This paper forms the first part of a PhD study exploring patient safety in medical diagnostic ultrasound, beyond the notion of bioeffects. The ultimate aim of the study is to inform the final phase of the research study which will consider the next steps in improving the quality and safety of healthcare experienced by patients. Methods: A qualitative study using semi-structured, one-on-one interviews. A thematic analysis categorised data into codes and generated final themes. Results: A heterogeneous mix of 31 sonographers, who reflected the profile of the profession in Australia, were interviewed between September 2019 and January 2020. Seven themes emerged from the analysis. These were bioeffects, physical safety, workload, reporting, professionalism, intimate examinations and infection control. Conclusion: This study presents a comprehensive analysis of sonographers' perceptions of patient safety in ultrasound imaging, not previously available in the literature. Consistent with the literature, patient safety in ultrasound tends to be viewed in technical terms through the potential for bioeffects of tissue damage or physical harm to the patient. However, other patient safety issues have emerged, and while not as well recognised, have the potential to negatively impact on patient safety. [ABSTRACT FROM AUTHOR]

Background: Big data research requires public support. It has been argued that this can be achieved by public involvement and engagement to ensure that public views are at the centre of research projects. Researchers should aim to include diverse communities, including seldom‐heard voices, to ensure that a range of voices are heard and that research is meaningful to them. Objective: We explored how researchers involve and engage seldom‐heard communities around big data research. Methods: This is a qualitative study. Researchers who had experience of involving or engaging seldom‐heard communities in big data research were recruited. They were based in England (n = 5), Scotland (n = 4), Belgium (n = 2) and Canada (n = 1). Twelve semistructured interviews were conducted on Zoom. All interviews were audio‐recorded and transcribed, and we used reflexive thematic analysis to analyse participants' experiences. Results: The analysis highlighted the complexity of involving and engaging seldom‐heard communities around big data research. Four themes were developed to represent participants' experiences: (1) abstraction and complexity of big data, (2) one size does not fit all, (3) working in partnership and (4) empowering the public contribution. Conclusion: The study offers researchers a better understanding of how to involve and engage seldom‐heard communities in a meaningful way around big data research. There is no one right approach, with involvement and engagement activities required to be project‐specific and dependent on the public contributors, researchers' needs, resources and time available. Patient and Public Involvement: Two public contributors are authors of the paper and they were involved in the study design, analysis and writing. [ABSTRACT FROM AUTHOR]

Background: The rapid advancement of technology-enhanced learning opportunities has resulted in requests of applying improved pedagogical design features of digital educational resources into nursing education. Digital educational resources refers to technology-mediated learning approaches. Efficient integration of digital educational resources into nursing education, and particularly into clinical placement, creates considerable challenges. The successful use of digital educational resources requires thoughtful integration of technological and pedagogical design features. Thus, we have designed and developed a digital educational resource, digiQUALinPRAX, by emphasizing pedagogical design features. The nurse educators' experiences of the usefulness of this digital educational resource is vital for securing improved quality in placement studies. Aim: To obtain an in-depth understanding of the usefulness of the pedagogical design features of a digital educational resource, digiQUALinPRAX, in supporting nurse educators' educational role in nursing home placements in the first year of nursing education. Methods: An explorative and descriptive qualitative research design was used. Individual semi-structured interviews were conducted with six nurse educators working in first year of a Bachelor's of Nursing programme after using the digital educational resource, digiQUALinPRAX, during an eight-week clinical placement period in nursing homes in April 2022. Results: Two main categories were identified: (1) supporting supervision and assessment of student nurses and (2) supporting interactions and partnerships between stakeholders. Conclusion: The pedagogical design features of the digiQUALinPRAX resource provided nurse educators with valuable pedagogical knowledge in terms of supervision and assessment of student nurses, as well as simplified and supported interaction and partnership between stakeholders. [ABSTRACT FROM AUTHOR]

Climate change is an important driver of migration, but little research exists on whether migrant communities in the U.S. identify climate change-related factors as reasons for migrating. In 2021, we conducted a multidisciplinary, collaborative project to better understand the nexus of climate change and immigrant health in the Atlanta area. This paper presents one arm of this collaboration that explored both the role of climate change in decisions to immigrate to Georgia and the ways that climate change intersects with other possible drivers of migration. First generation migrants from Latin America were recruited primarily through CPACS Cosmo Health Center and were invited to participate in an intake survey and an in-depth interview. Results were analyzed using descriptive statistics and thematic analysis. Findings suggest that while participants may not have explicitly identified climate change as a primary reason for migration, in both surveys and in-depth interviews, participants reported multiple and intersecting social, economic, political, and environmental factors that are directly or indirectly influenced by climate change and that are involved in their decisions to migrate. The narratives that emerged from in-depth interviews further contextualised survey data and elucidated the complex nexus of climate change, migration, and health. [ABSTRACT FROM AUTHOR]

Researchers and practitioners recognise the importance of context when implementing healthcare interventions, but the influence of wider environment is rarely mapped. This paper identifies the country and policy-related factors potentially explaining the country differences in outcomes of an intervention focused on improving detection and management of heavy alcohol use in primary care in Colombia, Mexico and Peru. Qualitative data obtained through interviews, logbooks and document analysis are used to explain quantitative data on number of alcohol screenings and screening providers in each of the countries. Existing alcohol screening standards in Mexico, and policy prioritisation of primary care and consideration of alcohol as a public health issue in Colombia and Mexico positively contributed to the outcome, while the COVID-19 pandemic had a negative impact. In Peru, the context was unsupportive due to a combination of: political instability amongst regional health authorities; lack of focus on strengthening primary care due to the expansion of community mental health centres; alcohol considered as an addiction rather than a public health issue; and the impact of COVID-19 on healthcare. We found that wider environment-related factors interacted with the intervention implemented and can help explain country differences in outcomes. [ABSTRACT FROM AUTHOR]

As uses of plasma-derived medical products increase globally, so does the demand to collect plasma from donors. There is evidence that positive interactions with center staff motivate plasma donors to return. This paper reports on a focused ethnography investigating experiences of nurses and phlebotomists in one of Canadian Blood Services’ first source plasma collection center during the COVID-19 pandemic. Participants found the transition from whole blood collection to source plasma amid a global pandemic challenging, but they adapted by coming together as a team, and then worked to put the donor experience first. Their experience resonates with scholarship on emotional labor. As blood services worldwide attempt to increase source plasma collection, there is a need to understand care work that nurses and phlebotomists perform on the front-line. This study offers insight into how blood services can support staff in plasma operations by recognizing emotional labor. [ABSTRACT FROM AUTHOR]

Public health agencies are increasingly concerned with ensuring that they are maximizing limited resources by delivering effective programs to enhance population-level health outcomes. Preventing mis-implementation (ending effective activities prematurely or continuing ineffective ones) is necessary to sustain public health efforts and resources needed to improve health and well-being. The purpose of this paper is to identify the important qualities of leadership in preventing mis-implementation of public health programs. In 2019, 45 state health department chronic disease employees were interviewed via phone and audio-recorded, and the conversations were transcribed verbatim. Thematic analysis focused on items related to mis-implementation and the manners in which leadership were involved in continuing ineffective programs. Final themes were based on a Public Health Leadership Competency Framework. The following themes emerged from their interviews regarding the important leadership competencies to prevent mis-implementation: '(1) leadership and communication; (2) collaborative leadership (3) leadership to adapt programs; (4) leadership and organizational learning and development; and (5) political leadership'. This first of its kind study showed the close interrelationship between mis-implementation and leadership. Increased attention to public health leader competencies might help to reduce mis-implementation in public health practice and lead to more effective and efficient use of limited resources. [ABSTRACT FROM AUTHOR]

Background: Bronchiolitis is a seasonal, global acute lower respiratory tract infection caused by respiratory syncytial virus (RSV) and is a leading cause of hospital admission in young children. A peer-led (parents to parents) intervention was implemented to empower parents of children at risk of bronchiolitis and reduce hospital admissions. This paper reported the evaluation that aimed to gain the perspectives and experiences of five key stakeholder groups. Methods: A qualitative remote interview-based design, informed by Appreciative Inquiry was used. Thematic analysis was used. Results: Sixty-five stakeholders participated: parents (n = 43; mothers, n = 42), Parent Champions (n = 9), Children's Centre Managers (n = 8), Children's Centre Group Leaders (n = 11), and Core Team (n = 4). An overarching theme 'Parents reaching out to parents' was supported by five sub-themes (Raising awareness and sharing knowledge; Creating connection, trust, and confidence; Flourishing in their role as a Parent Champion; Rising to the challenges; and Knowledge is power, prevention is key: the government needs to know this.) Conclusions: Parent-to-parent peer support via the Parent Champions was perceived positively by parents who wanted to learn and improve the lives and health of their children. Parent Champions were successful in delivering information. Considering the socioeconomic burden of bronchiolitis to services and families, the potential for an upstream, relatively low cost, high-reach innovative intervention, as evidenced in this project, seems a valuable opportunity for improving children's respiratory health. [ABSTRACT FROM AUTHOR]

Introduction: No one can argue on the importance of health in one's life. However, the value of health in the context of other priorities for individuals is not always as clear. Further, patients' experience with the healthcare system is rarely contrasted with the service providers' expectations. The aim of this paper is to examine and compare patients' and providers' own definitions of health and their perceptions of the healthcare delivery experience from the lens of residents and providers in West Baltimore, Maryland. Methods: This was a qualitative study with semi‐structured focus groups (15 sessions) and individual in‐depth interviews (21 interviews) with 94 participants. Two independent coders thematically analysed the transcripts. Results: Patients identified five areas where health systems can help them stay healthy or become healthier: affordability and costs of care; accessibility; clinician/patient communication; addressing social determinants; and stigma and trust. Providers acknowledged that the healthcare experience is not always perfect. While the medical team focuses on conversations that enhance medical care, patients are expecting providers to touch on subjects beyond medical care. Conclusions: Patients and providers need to consider that although they have a common value towards health, there is still a gap in what users expect and what providers can offer. To further align those expectations, there is a need for increasing involvement of patient in care administration and improving dialogue between the parties about these differences. Patient or Public Contribution: A Stakeholder Advisory Board (SAB)—comprised of a patient, two community leaders, a physician and two healthcare administrators—was instrumental in codeveloping the study material (e.g., interview guides), engaging patients in the research process, identifying participants and codeveloping dissemination material. Two SAB members—Gail Graham, a patient consultant/professor, and Marcia Cort, a physician—are coauthors. [ABSTRACT FROM AUTHOR]

Background and context: Breastfeeding peer support is valued by women, but UK trials have not demonstrated efficacy. The ABA feasibility trial offered proactive peer support underpinned by behaviour change theory and an assets‐based approach to women having their first baby, regardless of feeding intention. This paper explores women's and infant feeding helpers' (IFHs) views of the different components of the ABA intervention. Setting and participants: Trained IFHs offered 50 women an antenatal meeting to discuss infant feeding and identify community assets in two English sites—one with a paid peer support service and the other volunteer‐led. Postnatally, daily contact was offered for the first 2 weeks, followed by less frequent contact until 5 months. Methods: Interviews with 21 women and focus groups/interviews with 13 IFHs were analysed using thematic and framework methods. Results: Five themes are reported highlighting that women talked positively about the antenatal meeting, mapping their network of support, receiving proactive contact from their IFH, keeping in touch using text messaging and access to local groups. The face‐to‐face antenatal visit facilitated regular text‐based communication both in pregnancy and in the early weeks after birth. Volunteer IFHs were supportive of and enthusiastic about the intervention, whereas some of the paid IFHs disliked some intervention components and struggled with the distances to travel to participants. Conclusions: This proactive community assets‐based approach with a woman‐centred focus was acceptable to women and IFHs and is a promising intervention warranting further research as to its effect on infant feeding outcomes. [ABSTRACT FROM AUTHOR]

Young people in Colombia present high rates of mental health problems, to which the country’s history of armed internal conflict contributes in complex ways. Mental health services in Colombia are fragmented, inadequate, and difficult to access for many. Young people’s help)seeking is often hindered by mental health stigma and/or poor experiences with services. This paper presents a thematic analysis of qualitative data from a mixed-methods study aimed at developing and testing a mental health intervention for Colombian youths. We draw upon theoretical lenses from scholarly work on stigma and Sen’s ‘capabilities approach’ to inform our analysis of interviews and group discussions with staff and young people involved in the state-funded human capital building programme ‘Jovenes en Acción’ (JeA). By illustrating how study participants talked about stigma, vulnerability, mental health services organisation, and the challenges of discussing mental health topics in a learning environment, we illuminate aspects of mental health support and anti-stigma interventions that might need enhancing. In particular, we suggest that more emphasis on ‘community competencies’ as complementary to and interrelated with individual competencies would strengthen young people’s individual and collective resources for mental wellbeing while being in line with the sociocritical principles of existing human capital-enhancing programmes. [ABSTRACT FROM AUTHOR]

Background: Access to affordable, appropriate housing is one of the key social determinants of health, affecting well-being across the lifecourse. However, beyond a recognition that housing quality is linked to place of death, little is known about the ways in which housing status impacts social, emotional, and practical aspects of dying and bereavement. Method: The Checking Out project is a qualitative study aiming to explore the ways in which socio-economic status impacts people's experiences of, and attitudes towards, death, dying, and bereavement in the United Kingdom. Qualitative interviews were carried out with 14 bereaved individuals with experience of poverty at end of life or in bereavement, and 15 professionals supporting individuals in low-income communities. Interviews were conducted via phone/video call, and data include experiences of end of life and bereavement both before and during the pandemic. Transcripts were examined using thematic analysis. Results: Housing emerged as an important factor affecting people's experiences, with 7 of the 14 bereaved individuals and all except 1 of the professionals discussing housing-related issues. Participants described ways in which unsuitable housing and housing insecurity impacted practical aspects of dying but also emotional and social well-being at end of life. Housing-related issues affected both patients and their families, though families found it difficult to air these concerns when their relative was dying. Conclusion: The paper demonstrates how trusted professionals are able to advocate or address the issues faced by bereaved individuals and suggests implications for policy and practice. A greater awareness of the potential impact of housing status across public services, including healthcare practitioners, welfare support, and housing providers, could better support patients and practitioners to address these issues proactively. Housing providers and policy-makers should be included as key partners in collaborative public health approaches to palliative care. [ABSTRACT FROM AUTHOR]

This paper constructs an evaluation model of occupational competency in rehabilitation therapy and applies it to the improvement of college students' innovative and entrepreneurial competencies. Based on clarifying the connotation of college students' entrepreneurial competency, this study carries out research on the evaluation system of college students' entrepreneurial competency. First, the method of qualitative research is used to conduct in-depth interviews with college students and entrepreneurial mentors to understand the views of these groups on college students' entrepreneurial competency, and the coding of the interview contents is carried out by applying the rooting theory, and finally, a theoretical model of the composition of college students' entrepreneurial competency is derived. The front-line position of talent cultivation is the construction of faculty, because the faculty with high-quality vocational ability is an indispensable prerequisite for the development of universities, and the teaching level of the faculty is the key factor for the effectiveness of teaching to appear. Based on the perspective of role theory, we analyze the problems and reasons for the lack of competency in the role-playing process; integrate the three stages of understanding the role, playing the role, and adjusting the role with the competency model; and propose strategies to improve the competency of youth social workers in the process of playing the role, to help workers accurately understand the role, correctly play the role, and reasonably adjust the role. The curriculum is designed to cultivate the competency of college student nursing positions, which is conducive to improving the professional quality of college student nursing service providers and regulating college student nursing practice so that they can actively respond to problems. This will strengthen the entire teaching faculty and enhance the professional competence of full-time teachers. [ABSTRACT FROM AUTHOR]

Background: People with haemophilia A and inhibitors (PwHi) suffer more orthopaedic complications, bleeding and pain than those without inhibitors. The advent of emicizumab as a prophylactic treatment has led to a reduction in bleed frequency and a significant improvement in overall quality of life. No research to date has examined the nature of this improvement on treated individuals and their families. Aims: The Emi & Me study aims to capture the real‐life experience of using emicizumab for PwHi and their families. Methods: Participants were recruited through treatment centres, social media and by word of mouth. Each participant and a family member, if available, took part in a semistructured qualitative interview. All interviews were recorded, transcribed verbatim and analysed thematically. All elements of the study were reviewed by local statutory authorities and informed consent was sought from all participants. Results: Fifteen PwHi, mean age 27.2 years (range 8–63 years), most with a family member, participated in a single qualitative interview online (n = 13), by telephone (n = 1) or in person (n = 1). Mean time on emicizumab was 2.26 years (range 1–5 years). Six major themes emerged: bleeds; pain; treatment burden; control; freedom (for both PwHi and family members) and missed potential. Emicizumab prophylaxis has delivered significant improvements in the lives of the participants. Despite these improvements, some participants felt that their pre‐existing physical disabilities and the lack of physiotherapy provision had prevented them achieving similar improvements in their functional ability. Conclusion: This study shows that in reducing bleeds, pain and treatment burden, emicizumab had given PwHi greater control over their condition, allowing a sense of freedom they had not experienced with factor VIII or bypassing agent prophylaxis. However, for emicizumab to be truly effective, there is a need to ensure the continued availability and accessibility of robust multidisciplinary support services. Without this, it is unlikely that PwHi will realize the life‐changing potential offered either by emicizumab or any other novel treatment approach. Patient or Public Contribution: A patient participant (who did not wish to be included as an author of the paper) was involved in the design of the study protocol and interview guide. [ABSTRACT FROM AUTHOR]

Background: Presbyopia is a progressive condition that reduces the eye's ability to focus on near objects with increasing age. After a systematic literature review identified no existing presbyopia-specific patient-reported outcome (PRO) instruments meeting regulatory guidance, a new PRO instrument, the Near Vision Presbyopia Task-based Questionnaire (NVPTQ), was developed. Results: To explore the patient experience with presbyopia, concept elicitation interviews were conducted with 20 presbyopic participants. The most frequently reported impacts were difficulty with reading menus/books/newspapers/magazines, reading on a cell phone/caller ID, and reading small print. Based on these results, a task-based PRO instrument (the NVPTQ) was developed instructing participants to complete four near-vision, paper-based reading tasks (book, newspaper, nutrition label, menu) under standardized settings, and subsequently assess their vision-related reading ability and associated satisfaction. The draft NVPTQ was cognitively debriefed with a sample of 20 presbyopes, which demonstrated that most participants interpreted the items as intended and endorsed the relevance of the concepts being assessed. After the qualitative research, the draft instrument was psychometrically tested using data from a Phase 2 study. Based on item-level analyses, all items in the NVPTQ demonstrated expected response option patterns and lacked substantial floor or ceiling effects. The reliability, validity, and responsiveness of the NVPTQ Performance and Satisfaction domain scores were assessed. All domains scores had large Cronbach's coefficient α values and good test–retest statistics, indicating that the scores are internally consistent and produce stable values over time. The pattern of correlations with a concurrent measure of visual functioning (National Eye Institute Visual Function Questionnaire 25) demonstrated that the NVPTQ domain scores were related to an alternative assessment of near-vision activities. The NVPTQ domain scores were able to distinguish between groups that were known to differ on the clinical outcome of uncorrected near visual acuity, supporting the construct validity of these scores. The NVPTQ domain scores showed evidence of responsiveness to change by being able to distinguish between groups defined as improved and not improved based on patient-reported and clinical outcomes. Conclusions: This research has resulted in a content-valid and psychometrically sound instrument designed to evaluate vision-related reading ability and satisfaction with vision-related reading ability. Trial registration: ClinicalTrials.gov NCT02780115. Registered 23 May 2016, https://www.clinicaltrials.gov/ct2/show/NCT02780115?term=NCT02780115&draw=2&rank=1. [ABSTRACT FROM AUTHOR]

Background: Accurate symptom monitoring is vital when managing pediatric asthma, providing an opportunity to improve control and relieve associated burden. The CHILDHOOD ASTHMA CONTROL TEST (C-ACT) has been validated for asthma control assessment in children; however, there are concerns that response option images used in the C-ACT are not culturally universal and could be misinterpreted. This cross-sectional, qualitative study developed and evaluated alternative response option images using interviews with children with asthma aged 4–11 years (and their parents/caregivers) in the United States, Spain, Poland, and Argentina. Interviews were conducted in two stages (with expert input) to evaluate the appropriateness, understanding and qualitative equivalence of the alternative images (both on paper and electronically). This included comparing the new images with the original C-ACT response scale, to provide context for equivalence results. Results: Alternative response option images included scale A (simple faces), scale B (circles of decreasing size), and scale C (squares of decreasing quantity). In Stage 1, most children logically ranked images using scales A, B and C (66.7%, 79.0% and 70.6%, respectively). However, some children ranked the images in scales B (26.7%) and C (58.3%) in reverse order. Slightly more children could interpret the images within the context of their asthma in scale B (68.4%) than A (55.6%) and C (47.5%). Based on Stage 1 results, experts recommended scales A (with slight modifications) and B be investigated further. In Stage 2, similar proportions of children logically ranked the images used in modified scales A (69.7%) and B (75.7%). However, a majority of children ranked the images in scale B in the reverse order (60.0%). Slightly more children were able to interpret the images in the context of their asthma using scale B (57.6%) than modified scale A (48.5%). Children and parents/caregivers preferred modified scale A over scale B (78.8% and 90.9%, respectively). Compared with the original C-ACT, most children selected the same response option on items using both scales, supporting equivalency. Following review of Stage 2 results, all five experts agreed modified scale A was the optimal response scale. Conclusions: This study developed alternative response option images for use in the C-ACT and provides qualitative evidence of the equivalency of these response options to the originals. Plain English summary: Accurate monitoring of the symptoms associated with pediatric asthma is important when managing the condition. The CHILDHOOD ASTHMA CONTROL TEST (C-ACT) is a questionnaire widely used to measure asthma severity in young children (aged 4–11 years). Each question answered by the child in the C-ACT has four possible answer choices. To help children answer, each choice is presented alongside an image of a male child's face ranging from sad to happy. However, there are concerns that the images used are not culturally universal and could be misinterpreted—due to difficulties translating to electronic formats and a lack of differentiation between the images used. Through interviewing children with asthma, we aimed to address these concerns by developing and testing new images. Alternative image options developed included simpler faces, circles of decreasing size and squares of decreasing quantity. Children aged 4–11 years old were interviewed to test whether they understood the response scale using the new images and if they answered in the same way as with the original images. Interviews were conducted in two stages, with expert guidance at key stages. Results showed that children can interpret and understand the newly developed images and that they answer the questions the same as they would using the original images. These new images have the advantages of being culturally neutral and easier to implement on an electronic device. [ABSTRACT FROM AUTHOR]

Background: To guide the development of high‐quality care for people with multiple chronic conditions, partners of the European Joint Action CHRODIS developed the Integrated Multimorbidity Care Model. To assess its suitability for improving care for people with multimorbidity in the Netherlands, the model was piloted in a primary care setting with both patients and care providers. Aim: This paper reports on the patient perspective, and aims to explore the priorities, underlying values and preferences for care of people with multimorbidity. Participants and methods: Twenty persons with multimorbidity (selected from general practice registries) participated in a focus group or telephone interview. Subsequently, a questionnaire was completed by 863 persons with multimorbidity registered with 14 general practices. Qualitative data were thematically analysed and quantitative data by means of descriptive statistics. Results: Frequently prioritized elements of care were the use of shared electronic health records, regular comprehensive assessments, self‐management support and shared decision making, and care coordination. Preferences for how these elements should be specifically addressed differed according to individual values (eg weighing safety against privacy) and needs (eg ways of coping with multimorbidity). Conclusion: The JA‐CHRODIS Integrated Multimorbidity Care Model reflects the priorities and preferences for care of people with multimorbidity in the Netherlands, which supports its relevance to guide the development of person‐centred integrated care for people with multiple chronic conditions in the Netherlands. Patient contribution: European patient experts contributed to the development and applicability assessment of the JA‐CHRODIS Integrated Multimorbidity Care Model; Dutch patients participated in focus groups, interviews and a survey. [ABSTRACT FROM AUTHOR]