Care Organizations Research Articles

Limited critical and communicative health literacy is related to poorer health among older adults

Abstract Background Health literacy-related challenges are expected to increase with age due to a discrepancy between individual capacity and health care demands. Knowledge about associations between health literacy and age-related health outcomes among older adults is scarce. This is important to address and promote optimal health in older adults. The study aims to investigate the association between health literacy and health status among older adults and explore differences between the younger old and the oldest old adults. Methods Cross-sectional study using SWEOLD population-based data from 2022, a national representative sample of people 77+ years in Sweden. Univariate and multivariate logistic regression analysis assessed associations between communicative- and critical health literacy and health outcomes. Models were adjusted for age, sex, and socioeconomic status, and stratified by age. Results Significant adjusted associations were found between inadequate and problematic health literacy and less than good self-rated health (OR 2.64, 95%CI: 1.61-4.33; 2.11, 95%CI: 1.40.3.17), and requiring assistance with medicine management (OR 5.26, 95%CI: 2.67-10.38, 2.14, 95%CI 1.08-4.22). Among the younger old (77-84 years) inadequate and problematic HL was associated with having lifestyle-related conditions (OR 1.77, 95%CI: 1.07-2.93, 2.75, 95%CI: 1.33-2.71). Among the oldest old (85+), inadequate health literacy was associated with higher likelihood of poor activities of daily living (ADL) (OR 4.48, 95%CI: 1.99-10.07) and frailty (OR 3.51, 95%CI: 1.43-8.47). Level of frailty increases earlier in age for individuals with limited HL than among those with sufficient HL. Conclusions Limited health literacy is a prevalent issue in the older population and is associated with negative health-related outcomes. To mitigate development of poor health and frailty and to promote healthy ageing, care organisations need to meet the needs of this population in a health literacy friendly way. Key messages • Limited health literacy among the older population is associated with several negative health-related outcomes. • Care organisations need to work actively to mitigate the development of poor health while promoting healthy aging among the older population in a health literacy-friendly and age sensitive manner.

Mapping the Policy Alternatives for Rare Cancer

Abstract Issue This policy research addresses the issue of rare cancers in the European Union (EU). Rare cancers have an annual incidence rate of less than 6/100 000 and face challenges in diagnosis, clinical care, and research investment. Survival rates for rare cancers are lower compared to common cancer types, with significant variations among EU Member States. Description of the problem Policy frameworks for rare cancers are often fragmented and greatly vary across the EU. This study aims to develop a tool for assessing policy alternatives by reviewing existing national rare cancer policies, conducting interviews with experts, and analysing core stakeholders at the EU level. Results The main policy alternatives covered five domains: definition, registration, organisation of care, access to innovative therapies, and funding. Interviews revealed four policy options for each domain. Six core stakeholders were determined: patient organisations, healthcare professionals, researchers, industry, health legislators, and health authorities. A pilot policy assessment tool was developed on this basis. Lessons The pilot study coherently explored policy alternatives for rare cancers in the EU. Using these findings, policymakers and researchers can assess the impact of different policy options at a national level and contribute to the development of a unified EU policy framework for rare cancers. The pilot survey was also useful to collect input from the core stakeholders. Key messages • This study identifies key policy domains and feasible alternatives. A pilot preference assessment study based on these options can aid in EU policy development. • Navigating rare cancer policy complexities demands collaboration and innovation. Engaging stakeholders and exploring alternatives can forge a more effective EU framework for addressing rare cancers.

Facilitating the transfer and implementation of practices across health and care systems

Abstract The THCS partnership has developed the initial draft of a framework designed to facilitate the transfer and implementation of solutions across health and care systems. During the workshop, we will present this framework along with the preliminary results of its real-world testing in transfer and implementation activities. The goal of this presentation is to gather feedback on the framework and generate ideas for its further development. Choosing to transfer existing solutions rather than developing new ones can offer several advantages in terms of efficiency, reliability, and cost-effectiveness. Adopting existing solutions can save time and reduce development costs significantly. The THCS framework aims to support, promote, and accelerate the transfer and implementation of solutions across health and care systems. The THCS framework is primarily targeted at individuals involved in planning, coordinating, and executing development activities within health and care organizations. This framework includes: 1) Paradigmatic commitments that underpin its understanding of development activities, transferability, and implementation; 2) Principles for conducting the activities of transferring and adapting solutions developed elsewhere; 3) Guidelines for describing original solutions; and 4) Key development tasks that outline the necessary steps for transferring, adapting, and implementing solutions developed elsewhere.

Analysis of the national structure of care provided to older people in Slovenia

Ageing in place has for many years been at the forefront of political goals for care provision for older people in Europe. The organization of care in terms of the national governing structure must therefore be continually observed to better understand the care actually offered and then used by older people. In this study, we examined the organization of social home care and institutional care across municipalities and administrative units in terms of what is offered to older people as formal care. Variation across municipalities and administrative units is observed with explorative cluster analysis and analysis of means of key dependent variables across clusters to better understand the variability in the care offered to older people in those municipalities and administrative units. The results show that while social home care is temporally available across several clusters of municipalities, and the affordability of social home care is also stable across clusters of municipalities, there are still municipalities where social home care has a limited time availability and municipalities where the out-of-pocket contribution to social home care delivery is nearly the twice the average of such contributions. In terms of institutional care, one can find administrative units with either a deficit or a surplus of placements of such care available.

Unveiling women's lived experiences with care provided by a pregnancy heart team: A qualitative phenomenological study.

The purpose of this study was to gain an in-depth understanding of the lived experiences of women with CVD regarding their care by a pregnancy heart team (PHT) during pregnancy and the immediate postpartum period. Using a qualitative phenomenological study, data were collected through semi-structured interviews with 13 women receiving follow-up care from a PHT at a large tertiary center. Data were collected between December 2022 and September 2023, and thematic content analysis was conducted. The lived experiences of women with CVD were reflected in the PHT by two main themes: "emotional distress" and "(dis-)organization of care." The "emotional distress" theme had sub-themes of "awareness and impact of CVD on pregnancy," "loneliness," and "need for psychological support." The theme of "(dis)organization of care" was expressed through the sub-themes of "(dis-)continuity of care" and "(expected) skills of healthcare providers." The current study findings highlight the impact of CVD on pregnancy and the emotional challenges faced by women with CVD during the course of their pregnancy. Improvements in accessibility, timeliness, reciprocity and shared decision-making, and psychological support could contribute to more patient-centered care.

Hybridity and Leadership In Norwegian Early Childhood Education and Care Organizations

Norwegian early childhood education and care organizations are marked by tensions. These tensions are rooted in the social mandate, in recent changes in the ownership structure and in increased competition. The challenges that these changes pose to ECEC organizations and leadership need further exploration. This two-tiered article first analyzes these changes using the notion of the hybrid organization. Building on existing regulations, policy documents, previous research, and available statistics, the analysis takes a particular interest in organizational goals and missions and argues that organizational hybridity is a central feature of ECEC organizations. The analysis relates hybridity to governing mechanisms. Second, the article discusses the consequences of hybridity for ECEC directors. The inherent tensions generated by potentially conflicting missions are discussed in relation to internal and external leadership. The article aims to contribute a new perspective on organizations and leadership in Norwegian ECEC research.

ERN eUROGEN Guidelines on the Management of Anorectal Malformations, Part IV: Organization of Care and Communication between Providers.

Being born with an anorectal malformation (ARM) can have profound and lifelong implications for patients and parents. Organization of care and communication between health care providers is an overlooked area of patient care. The European Reference Network eUROGEN for rare and complex urogenital conditions assembled a panel of experts to address these challenges and develop comprehensive guidelines for the management of ARM. The Dutch Quality Standard for ARM served as the basis for the development of guidelines. Literature was searched in Medline, Embase, and Cochrane. The ADAPTE method was utilized to incorporate the newest available evidence. A panel of 15 experts from seven European countries assessed currency, acceptability, and applicability of recommendations. Recommendations from the Dutch Quality Standard were adapted, adopted, or rejected and recommendations were formed considering all available evidence, expert consensus, and the European context. Aspects pertaining to organization of care, patient/parent/health care provider communication, and referral and collaboration between providers caring for ARM patients were assessed. Two new studies were identified. In total, the panel adapted 12 recommendations, adopted 7, and developed 2 de novo. The overall level of newly found evidence was considered low and most recommendations were based on expert opinion. Collaborative care and organization of care are gaining importance in the field of ARM. This guideline gives practical guidance on how to achieve better communication and collaboration between all involved parties, applicable at the European level.

Effectiveness of Residential and Intensive Outpatient Programs for the Treatment of Post-Traumatic Stress Disorder in Active Military Personnel and Veterans: A Meta-Analytical Review

ABSTRACT The care and services offered in the treatment of active military personnel and veterans with PTSD take a variety of forms, ranging from residential to outpatient treatment programs. The differences in the organization of care between these programs make comparisons difficult; however, an intermediate alternative exists in the form of intensive outpatient programs (IOPs), whose organization and range of care are closer to that offered in residential programs. This review compares and evaluates the effectiveness of residential programs to that of IOPs in the treatment of PTSD in active military personnel and veterans. Nine databases were searched from September/November 2022 to include primary studies evaluating the treatment of PTSD in active military personnel and veterans in residential programs and IOPs. Results were summarized in a narrative synthesis. A meta-analysis using a random effects model examined changes in standardized mean differences in PTSD symptom scores at baseline and discharge. Thirty-two studies in 41 publications were included. There was a notable decrease in PTSD symptom scores at the end of treatment in both programs, and no significant difference was found between them. However, IOPs effectiveness may be influenced by patient type (active military personnel or veterans). Regardless, our results suggest a positive effect of both types of programs on reducing PTSD symptoms. It is essential to be aware of the constraints inherent in the literature on the subject, including the lack of comparative studies, the potential impact of comorbidities, and the differential response of active military personnel and veterans to similar treatments.

Decisional needs for older adults, home health care nurses and dental hygienists during team-based oral health assessments in ordinary home settings – a qualitative study

BackgroundParticipation by all actors involved in health planning is a prerequisite for person-centred care and healthy ageing. Understanding the multiple knowledge needs and the values that shape oral health assessments in home settings is important both to enable participation in oral health planning and to contribute to healthy ageing.ObjectiveThe aim of this study was to investigate decisional needs during oral health assessments in ordinary home settings from the perspectives of older adults, home health care nurses and dental hygienists.MethodsData was collected in ordinary home settings through 24 team-based oral assessments and 39 brief, semi-structured interviews including older adults (n = 24), home health care nurses (n = 8) and dental hygienists (n = 7). Data was analysed using content analysis with a deductive approach. The analysis was guided by the Ottawa Decision Support Guide.ResultsThe analysis revealed that all participants considered participation in decision-making important but until now, older adults might not have participated in making decisions regarding oral health issues. The older adults considered participation important because the decisions had a strong impact on their lives, affecting their health. The professionals considered decision-making important for knowing what step to take next and to be able to follow up and evaluate previous goals and treatments. Organizational and personal barriers for shared decision-making among home health care nurses and dental hygienists were identified. Of the 24 older adults, 20 had different oral health conditions that objectively indicated the need for treatment. An initial important decision concerned whether the older adult wanted to make an appointment for dental care, and if so, how. Another decisional conflict concerned whether and how assisted oral care should be carried out.ConclusionIt is important for key participants in ordinary home settings to participate in interprofessional teams in home health care. To further anchor this in theory, conceptual models for professionals from different care organizations (municipal care, dental care) need to be developed that also involve older adults as participants. Future research could bridge theory and practice by including theories of learning while exploring interorganizational oral health planning in home settings.

Implementing telemedicine with 5G technologies in a nursing home for reducing emergency admissions– study protocol of a mixed-methods study

BackgroundBy transmitting various types of data, telemedical care enables the provision of care where physicians and patients are physically separated. In nursing homes, telemedicine has the potential to reduce hospital admissions in nonemergency situations. In this study, telemedicine devices were implemented with the new 5G mobile communications standard in selected wards of a large nursing home in Northwest Germany. The main aim of this study is to investigate which individual and organizational factors are associated with the use of telemedicine devices and how users perceive the feasibility and implementation of such devices. Moreover, it is investigated whether the telemedical devices help to reduce the number of emergency admissions.MethodsTelemedicine devices are implemented over an 18-month period using a private 5G network, and all users receive training. This study uses qualitative and quantitative methods: To assess the individual and organizational factors associated with the use of telemedicine devices, survey data from employees before and after the implementation of these devices are compared. To assess the perception of the implementation process as well as the feasibility and usability of the telemedical devices, the nursing staff, physicians, medical assistants and residents are interviewed individually. Moreover, every telemedicine consultation is evaluated with a short survey. To assess whether the number of emergency admissions decreased, data from one year before implementation and one year after implementation are compared. The data are provided by the integrated dispatch centre and emergency medical services (EMS) protocols. The interview data are analysed via structured qualitative content analysis according to Kuckartz. Survey data are analysed using multivariable regression analysis.DiscussionLearnings from the implementation process will be used to inform future projects implementing telemedicine in care organizations, making the final telemedicine implementation and care concept available to more nursing homes and hospitals. Moreover, the study results can be used to provide use cases for appropriate and targeted application of telemedicine in nursing homes and to define the role of 5G technologies in these use cases. If the intervention is proven successful, the results will be used to promote 5G network rollout.Trial registrationGerman Clinical Trials Register – trial registration number: DRKS00030598.

Evaluation of an interprofessional educational program in nursing home practice: a mixed methods multiple-case study

ABSTRACT Research has shown that interprofessional collaboration (IPC) and education (IPE) may potentially lead to better care for residents in nursing homes, but their implementation is challenging. This study evaluates the implementation of a co-designed IPE program and investigates what and how healthcare students learn and what factors influence their learning. A mixed-methods approach was used to evaluate three cases, with student participation in the IPE (n = 72). The study comprised pre- and posttests, focus groups, and interviews (n = 54). The results indicate that students developed their interprofessional skills and person-centered practice, as confirmed by both the students and educators in the interviews. Additionally, the findings suggest that others also learned from the program. The study emphasizes the influence of workplace learning culture, resources, organizational infrastructure for IPC, and educators’ embeddedness in the care organization on learning outcomes. The findings suggest that IPE is stimulated and accelerated by existing IPC and can stimulate or accelerate existing IPC. As the enabling factors are interrelated, addressing them simultaneously on all organizational levels may result in the faster development of an IPE-ready organization.

Policy Brief – Survivorship is cancer survivorship the poor cousin of cancer control within the EBCP?

BackgroundThere is an increasing number of cancer survivors, including children, adolescents, young adults, individuals of working age, and the elderly, within the Belgian and European population. Yet, survivorship care and rehabilitation are often treated as an afterthought in care organisation. This not only directly affects the quality of life of survivors and carers, but also puts the sustainability of the healthcare and social security systems at risk.MethodsWe analysed the ongoing Europe Beating Cancer Plan (EBCP) to identify the actions supporting survivorship (care) developments, then compared their weight in the EBCP to the other domains of cancer control. Following this analysis, and comparison with related ongoing projects, and current infrastructure in Belgium, several unmet needs were identified.ConclusionTo better address these unmet needs, we recommend that Belgium incorporates survivorship care and long-term follow-up in clinical guidelines and care pathways, and considers including indicators related to cancer survivorship in the planning and design of quality insurance schemes, including certification of comprehensive cancer centres. Furthermore, we suggest further investment and support for research and knowledge exchange in the field of survivorship.

Trends in the incidence, organization of care, and treatment of medullary thyroid cancer in the netherlands over the last three decades: a population-based study

Trends in the incidence, organization of care, and treatment of medullary thyroid cancer in the netherlands over the last three decades: a population-based study

Linked Care: A Harmonized Workflow for Medication Ordering, Prescription and Dispensing in Mobile Care Settings.

The growing demand for care amid changing demographics poses significant challenges exacerbated by decreasing healthcare professional availability. In Austria, the Linked Care project aims to address these challenges by developing an intersectoral, harmonized IT-supported workflow for medication ordering, prescription, and dispense in mobile care settings. A human centered design approach, with user-focused interviews and workshops was used to identify requirements and analyze the workflows. Activity diagrams were used represent workflows. The resulting harmonized workflow, developed through iterative collaboration with care organizations, integrates the LC platform into existing care software. To test and demonstrate the harmonized workflow, mockups were created and evaluated for usability, resulting in positive feedback and suggestions for enhancements. Current workflows revealed media breaches and inefficiencies, which the proposed harmonized workflow seeks to address. The paper concludes with implications for future developments, including the subsequent adoption of a HL7 FHIR Implementation Guide for Austria, based on the defined harmonized workflow, to streamline intersectoral communication and improve efficiency in mobile care settings.

Validation of a tagalog version of the EORTC PATSAT-C33 and EORTC OUT-PATSAT7 patient satisfaction questionnaires for patients with cancer undergoing outpatient radiotherapy.

190 Background: The satisfaction of cancer patients with their care significantly impacts their quality of life. Beyond specific cancer treatments, the delivery of care plays a vital role. Evaluating patient satisfaction with care is increasingly important in oncology due to the prolonged and intensive nature of cancer management. Discussions often focus on medical aspects, neglecting administrative and psychosocial concerns. Patient-centered care involves assessing satisfaction, which reflects perceived quality. Patient satisfaction is now recognized as a key indicator of care quality. Methods: The EORTC developed tools like PATSAT-C33 and OUT-PATSAT7 to assess satisfaction with cancer care. These instruments, translated into Tagalog using a “forward-backward” translation procedure in accordance with the EORTC QOL Study Group guidelines, were validated among Filipino cancer patients undergoing radiotherapy. The tools encompass dimensions like doctors' skills, information exchange, nurses' responsiveness, and care organization. They showed reliability and validity comparable to the original versions. Results: Construct, criterion, and factorial validity were assessed, indicating the tools measure intended constructs effectively. The multi-item scales of EORTC PATSAT-C33 and EORTC OUT-PATSAT7 have good to excellent internal consistency. A value between 0.8 - 0.9 represents good reliability, whereas a Cronbach alpha of≥0.9 represents excellent reliability. Criterion validity was confirmed by comparing them with a validated Filipino satisfaction scale. Each dimension identified in the original study applies to Filipino cancer patients, suggesting the tools' applicability across populations. Conclusions: Despite some demographic biases in the study sample, the translations proved valid and reliable. These Tagalog versions are recommended for use with native Tagalog-speaking Filipino cancer patients. Further studies with larger sample sizes may enhance reliability. [Table: see text]

Supplementing systematic review findings with healthcare system data: pilot projects from the Agency for Healthcare Research and Quality Evidence-based Practice Center program

ObjectivesThe US Agency for Healthcare Research and Quality, through the Evidence-based Practice Center (EPC) Program, aims to provide health system decision makers with the highest-quality evidence to inform clinical decisions. However, limitations in the literature may lead to inconclusive findings in EPC systematic reviews (SRs). The EPC Program conducted pilot projects to understand the feasibility, benefits, and challenges of utilizing health system data to augment SR findings to support confidence in healthcare decision-making based on real-world experiences. Study Design and SettingThree contractors (each an EPC located at a different health system) selected a recently completed SR conducted by their center and identified an evidence gap that electronic health record (EHR) data might address. All pilot project topics addressed clinical questions as opposed to care delivery, care organization, or care disparities topics that are common in EPC reports. Topic areas addressed by each EPC included infantile epilepsy, migraine, and hip fracture. EPCs also tracked additional resources needed to conduct supplemental analyses. The workgroup met monthly in 2022-2023 to discuss challenges and lessons learned from the pilot projects. ResultsTwo supplemental data analyses filled an evidence gap identified in the SRs (raised certainty of evidence, improved applicability) and the third filled a health system knowledge gap. Project challenges fell under three themes: regulatory and logistical issues, data collection and analysis, and interpretation and presentation of findings. Limited ability to capture key clinical variables given inconsistent or missing data within the EHR was a major limitation. The workgroup found that conducting supplemental data analysis alongside an SR was feasible but adds considerable time and resources to the review process (estimated total hours to complete pilot projects ranged from 283 to 595 across EPCs), and that the increased effort and resources added limited incremental value. ConclusionSupplementing existing SRs with analyses of EHR data is resource intensive and requires specialized skillsets throughout the process. While using EHR data for research has immense potential to generate real-world evidence and fill knowledge gaps, these data may not yet be ready for routine use alongside SRs.

Recommendations for managing adults with chronic non-cancer pain in primary care: A systematic clinical guideline review.

Chronic non-cancer pain (CNCP) is a leading driver of disability. Primary care clinicians treat most patients with CNCP. Yet, they are often unable to identify appropriate pain treatments, mainly due to concerns about the safety and effectiveness of available medications. Clinical practice guidelines (CPGs) can be useful tools to guide primary care clinicians in selecting pain treatments based on the best available evidence. To undertake a systematic review of CPGs that address the management of adults with CNCP, regardless of underlying condition type, in primary care. We systematically reviewed and synthesised current CPGs for managing adults with CNCP in primary care (2013-2023). We followed a stepwise systematic process to synthesise key CPG recommendations: extracted and analysed each recommendation, synthesised by compiling similar recommendations using a thematic analysis approach, and assessed the strength of CPG recommendations to create a final, unified set of recommendations. We focused on identifying CPGs containing recommendations on the following topics: (a) opioid pain management, (b) non-opioid pharmacological pain management, (c) non-pharmacological pain management, and (d) patient-centred communication around pain management, prevention, and organisation of care. We included 13 CPGs, 8 of which focused solely on use of opioids, emphasising the lack of long-term effectiveness and safety concerns, being mainly based on the expert consensus. As an exception, high-quality evidence recommended referring patients with suspected opioid use disorder to specialist addiction services for medication-assisted treatment. Recommendations for non-opioid pain management were often contradictory and based on the expert consensus. Patient-centred pain management combined with exercise-based interventions and psychological therapies are appropriate strategies for managing patients with CNCP. Most CPGs focused on opioid management, with contradictory recommendations for non-opioid management based on low-quality evidence. Additional research is needed to strengthen the evidence for using non-opioid and non-pharmacological interventions to manage patients with CNCP.

Trust in Black and White Breast Cancer Patients: Opportunities to Enhance Trustworthiness in Cancer Care

IntroductionThis study evaluated the relationships between patient and cancer delivery factors with trust in oncology providers in a racial/ethnically diverse group of cancer patients. MethodsData were analyzed from a prospective cohort study of women with hormone receptor positive (HR+) breast cancer. A standardized survey collected validated measures of trust in providers, psychosocial factors, and cancer care delivery factors. Multivariable logistic regression models and race-stratified models were employed to calculate odds ratios and 95% confidence intervals associated with trust. ResultsOf the 567 participants, 28% identified as Black and the rest were White. Compared to White women Black women reported lower trust in providers. Four domains of cancer care delivery were significantly associated with patients’ higher trust in their providers: general satisfaction with care (P < .0001), technical quality of the provider (P < .001), interpersonal manner of the provider (P = .0008) and provider communication (P = .0010). Race-stratified models revealed 2 significant cancer care delivery domains for both groups (ie, general satisfaction and interpersonal) and 2 care domains (technical quality and communication) that were only significant among White women. ConclusionEfforts are needed to nurture trusting relationships between Black women and their oncology providers. Factors related to the organization and delivery of cancer care are modifiable targets for interventions as these were robust predictors of patient trust regardless of a woman's self-reported race. Investments in strategies that strengthen the structure and organization of care towards a structures of trust worthiness may better support providers and patients and ultimately reduce cancer care disparities.

PEER CONNECT: a pragmatic feasibility randomised controlled trial of peer coaching for adults with long-term conditions

ObjectiveTo test the feasibility of a targeted peer coaching intervention on the health and well-being of people with long-term health conditions and low activation attending outpatient clinics at a UK...

A sense of injustice in care networks: An intersectional exploration of the collaboration between professionals and carers with a migration background.

This study tries to understand the power of knowledge within collaborative care networks to provide insights for designing successful collaboration within care networks by combining intersectionality and epistemic (in)justice. Becoming an informal carer for someone with an acquired brain injury (ABI) causes a dramatic disruption of daily life. Collaboration between professionals and carers with a migration background may result in unjust and unfair situations within care networks. Carer experiences are shaped by aspects of diversity which are subject to power structures and processes of social (in)justice in care networks. In this study, intersectionality was used to both generate complex in-depth insights into the different active layers of carer experiences and focus on within-group differences. Intersectionality was combined with the theoretical concept of epistemic (in)justice to unravel underlying dynamics in collaborative care networks contributing to the understanding that carers with a migration background are often not seen as ‘knowers of reality.’ This qualitative study conducted in the Netherlands between 2019 and 2022 incorporated three informal group conversations (N = 32), semi-structured interviews (N = 21), and three dialogue sessions (N = 7) with carers caring for someone with an ABI. A critical friend and a community of practice, with carers, professionals, and care recipients (N = 8), contributed to the analysis. Three interrelated themes were identified as constituting different layers of the carer experience: (a) I need to keep going, focusing on carers' personal experiences and how experiences were related to carers social positioning; (b) the struggle of caring together, showing how expectations of family members towards carers added to carer burden; and (c) trust is a balancing act, centering on how support from professionals shaped carers' experiences, in which trusting professionals' support proved challenging for carers, and how this trust was influenced by contextual factors at organizational and policy levels. Overall, the need for diversity-responsive policies within care organizations is apparent. Carers with a migration background need to feel heard so they can meaningfully tailor care to meet recipients' needs.