Adult Care Research Articles

Nature and Challenges of Transnational Family Caregiving: A Scoping Review

ABSTRACT Purpose This scoping review explored the nature and challenges of transnational family caregiving. International migration and global aging have resulted in growing instances of transnational family caregiving, which involves providing care for older adults across national borders. However, little is known about the realities of such caregiving. Method Following the scoping review framework set forth by Arksey & O’Malley (2005), we searched 10 electronic databases (e.g. AgeLine, MEDLINE, CINAHL) using targeted search terms (e.g. transnational*, cross-border*) and predefined eligibility criteria. After removing duplicates, screening the titles and abstracts, and reviewing full texts, nine articles were eligible for inclusion. Findings Studies showed that transnational caregiving involves providing financial and emotional support, arranging care, mailing gifts and letters, making care decisions, and communicating via phone/video calls. Financial strain comes from expenses in the host and support countries, including traveling back to the home country. Transnational caregivers experience guilt, worry, and distress related to the unpredictability of the care situation and their inability to be physically present. Strict immigration policies, inadequate employer support, and limited institutional care in home countries also present challenges. Implications This review highlights the nature and challenges experienced by transnational caregivers, yet further research is needed to deepen our understanding of this unique subpopulation of caregivers.

Assessing the feasibility of measuring residents’ quality of life in English care homes and the construct validity and internal consistency of measures completed by staff proxy: a cross-sectional study

ObjectivesTo assess the feasibility of capturing older care home residents’ quality of life (QoL) in digital social care records and the construct validity (hypothesis testing) and internal consistency (Cronbach’s alpha)...

Assessing the reliability and feasibility of quality indicators used to evaluate long-term care for older adults.

Standardized quality indicators for long-term care (QIs-LTC) were previously developed to ensure high-quality holistic nursing care for older adults. This research aimed to assess the feasibility and reliability of unfavorable health outcomes measured by the QIs-LTC and proposed strategies for improvement. Thirty-nine pairs of home care nurses assessed 53 clients. We evaluated 20 of the 21 items of feasibility to calculate scores for the "I do not know" answer and test the interrater reliability using bias-adjusted and prevalence-adjusted kappa (PABAK). We then conducted interviews with 16 home care nurses to collect feedback on the implementation of QIs-LTC. Based on this feedback, we developed the QIs-LTC assessment manual and reassessed the QIs-LTC when used with the manual. The mean for the "I do not know" answer was 13.8%, and the mean PABAK was 0.75 (±0.28). Overall, the reliability was good for physical assessment but inadequate for social aspects. Using the assessment manual, the mean for the "I do not know" answers decreased to 10.4%. The mean PABAK was 0.77 (±0.32) and increased for 12 unfavorable health outcomes. The feasibility and reliability of most unfavorable health outcomes were ensured by using the newly developed assessment manual. Challenges in education and practice of social aspects were identified. QIs-LTC support individual and agency evaluations, nursing interventions and quality evaluations, which are a priority for long-term care in Japan. Geriatr Gerontol Int 2025; ••: ••-••.

Developing a set of key principles for care planning within older adult care homes: study protocol for a modified Delphi survey

BackgroundOlder adult care homes in England are required to develop care plans on behalf of each of their residents and to make these documents available to those who provide care....

Development and Validation of the Internalized Care Stigma Scale (ICSS): Measuring care stigma aimed at informal care for older adults in Germany.

In this study we developed and validated the Internalized Caregiver Stigma Scale (ICSS) to measure internalized stigma targeting informal care for older adults (≥60 years) in Germany. The ICSS scale was developed in the Attitudes Towards Informal Caregivers (ATTIC) project based on stigma theories and (cognitive) pretesting with informal caregivers. Informal long-term caregivers (aged ≥40 years; n=433) of older relatives (aged ≥60 years) were quota-sampled from the online panel GapFish in December 2023 (twice as many female and middle-aged (aged 40-64 years) caregivers than male and younger (18-39 years) or older adults (65+ years) were included in the sample). Caregiver identification and the Social Impact Scale were used for validation of the newly developed measure. Factor structure, reliability and concurrent validity were tested. A correlated two-factor model with excellent goodness of fit criteria and good to excellent internal consistency of the factors and the total scale was confirmed for the ICSS. The negative ICSS subscale correlated highly, and the positive ICSS subscale correlated weakly, with the care-specific Social Impact Scale. Both ICSS subscales were weakly correlated with caregiver identification. Both aspects of self-stigma showed significant associations with sociodemographic and care-specific factors in the regression models. The ICSS is the first scale measuring internalized stigma targeting informal care for older adults directly and shows excellent psychometric criteria. It provides the necessary tool for a new approach to analyze the complex psychosocial mechanisms in this highly relevant care context.

A Framework to Optimize Primary Care of Older Surgical Patients: A Qualitative Study of Geriatricians.

An increasing number of older adults are undergoing surgery. Older adults face significant challenges throughout the spectrum of perioperative care. No frameworks exist to support primary care clinicians in helping older adults navigate perioperative care beyond preoperative medical clearance. We aimed to develop a framework to assist primary care clinicians in surgical care navigation for older patients. This qualitative study used semistructured interviews with a sample of geriatricians from across the US between January and June 2022. Interviews were conducted one on one via an online video conferencing platform without observers present. Demographics of participants were analyzed using descriptive statistics. Directed content analysis of interview data was used to examine how primary care clinicians can optimally support older patients throughout the perioperative process. This qualitative study included 24 geriatricians, 16 (67%) women, with median time in practice of 12.4 years (IQR, 5.0-24.5 years). Of those, 11 (46%) worked at an academic or tertiary referral center. Qualitative analysis identified 7 actions that geriatricians perform when caring for patients through the surgical continuum: conduct risk-benefit analysis of surgical referral, elicit and communicate patient goals, prepare patient and family for surgical consultation, set realistic expectations, assist with decision about surgery, advocate for patient and family, and coordinate postoperative care. In this qualitative study of geriatricians, 7 key domains of perioperative care for older adults were identified. The resulting framework can be used by primary care clinicians as they help their older patients navigate surgical care.

How Important are Carer Tasks in Determining Carer Quality of Life? Evidence from a Shapley Decomposition Approach

Abstract While there is a large literature that examines the determinants of carer quality of life, there is a dearth of research that focuses on the usual activities that carers perform and how they are related to carer-specific measures of quality of life. We use data from the Survey of Adult Carers in England to investigate the role that the tasks that carers perform play in determining carer quality of life. We model the relationship between the variables through a series of simple linear regressions, multiple linear regressions, and a Shapley decomposition. We find that all of the individual tasks that we have information on are statistically significant predictors of carer quality of life. In addition, the Shapley decomposition shows that, when taken together, carer tasks explain a higher proportion of variance in carer quality of life than any other group of determinants. These results are largely robust to different measures of carer tasks, different measures of carer quality of life, and different subgroups. We also find that there is evidence of a causal link between carer tasks and carer quality of life as carers report that their caring responsibilities have affected tangible health outcomes such as illnesses and GP visits. From a policy perspective, local government services that are used to support carers should know that policies designed to help carers with their tasks could have a large impact on carer quality of life.

Distribution of informal caregiving for older adults living with or at risk of cognitive decline within and beyond family in rural South Africa.

Aging populations will increasingly need care, much of this provided informally particularly in rural areas and in low and middle-income countries. In rural South Africa, formal support is severely limited, and adult children are frequently unavailable due to morbidity, early mortality, employment and migration. We describe how care is shared within and between households. We conducted quantitative interviews with 1,012 household members and non-household caregivers of 106 older adults (age ≥54) living with or at risk of cognitive decline in rural Mpumalanga, South Africa. Using descriptive statistics and regression analysis, we described how care is shared, with particular attention to generational patterns of care. Spouses, the majority women, commonly considered themselves primary caregivers. informal care was spread among family, friends, and neighbors, most commonly by unemployed female relatives one or two generations younger than the recipient. A small number of paid caregivers, also mostly female, provided the most intensive care. Informal care for older adults was spread widely, predominantly from co-resident family but with important contributions from others. Family commitment to care reflected shared history, reciprocal relationships, and easy access to care tasks within the household. A deeper understanding of how informal care for older adults is shared is essential for developing targeted interventions.

The Perspectives of Young Adults with Cerebral Palsy on Transition to Adult’s Health Care and Rehabilitation

The purpose of this study was to describe the perspectives of young adults with cerebral palsy on participating in the transition process when transitioning from children’s health care to adults’ health care and rehabilitation. A phenomenographic approach with data collected with semi-structured interviews was used. Fourteen young adults aged 19–26 with cerebral palsy participated. The analysis resulted in four categories: (1) need for comprehensive and participatory rehabilitation; (2) barriers in the rehabilitation system; (3) self-awareness, courage and activity are rewarded; and (4) a dream of an active role in society. To conclude, the young adults had both positive and negative experiences of the transition process as well as of the rehabilitation planning at the adult health care service. It is important to start the transition planning early, and to involve the young adult as an active participant in the planning process. Both in the transition phase and in the adult health care service an anticipatory and collaborative approach where the young adult’s holistic needs would be considered should be standard practice. A focus is needed on how to grow towards a good adulthood and how to live a meaningful life as a valued member of society.

Evaluation of an updated educational intervention on nutritional care to prevent undernutrition among older adults in primary health care.

The aim of this study was to evaluate district nurses' perceived and factual knowledge about nutritional care after an updated and expanded educational intervention. Furthermore, we aimed to compare the outcomes of the revised and the original educational intervention. In-depth knowledge of nutritional care is a prerequisite to supporting older adults' well-being and health. District nurses' actual knowledge of the nutrition care process, older adults' need for food, and palliative care in diverse phases of disease is therefore of utmost importance. An updated and expanded educational intervention meeting these needs was evaluated. A study-specific questionnaire about nutritional care was used before and after the educational intervention. Participants (n = 118) were district nurses working in primary health care in Region Stockholm. Additionally, a pre- and post-test quasi-experimental design was used to assess differences in learning outcomes of the revised intervention compared with the original intervention. District nurses who completed the questionnaire had worked in health care for about 18 years and as district nurses for 5 years after their specialist examination. After the revised educational intervention, significant improvements were found in all statements concerning perceived challenges and actions related to nutritional care, while questions about factual knowledge showed significant improvements in three of the four questions.Comparison between the revised and the original intervention revealed no differences in most areas of perceived challenges and actions related to nutritional care. Additionally, in half of the areas assessed, factual knowledge improved more after the revision than after the original educational intervention, including the maximum length of overnight fast and the type of oral nutritional supplements (ONS) that should be prescribed. The intervention was successful in increasing knowledge about nutritional care, nutritional counselling, food adaptation, and prescribing ONS in an individually tailored way. In-depth knowledge supports usability in clinical practice. Nevertheless, we need to follow-up and understand how increased knowledge about undernutrition and ONS prescription are implemented in primary health care when caring for older adults' desires and needs.

Healthcare and non-healthcare professionals’ knowledge about nutrition in older adults: a cross-sectional study

BackgroundMalnutrition frequently affects older adults, increasing their risk for numerous diseases, as well as healthcare costs. Therefore, nutritional assessment and appropriate nutritional support addressed to meet individual nutritional needs and prevent malnutrition and its consequences should be a fundamental part of healthcare for older adults. This study aimed to compare the knowledge of nutrition guidelines for older adults between healthcare and non-healthcare professionals working with older adults.MethodsThe study was conducted during May and June 2021 using a validated “Knowledge of nutrition guidelines for older adults” questionnaire designed by Andrija Stampar Teaching Institute of Public Health, Croatia. The study participants were recruited from various institutions providing care for older adults in Split-Dalmatia and Dubrovnik-Neretva County. The final convenience sample consisted of 214 participants (163 healthcare professionals and 51 non-healthcare professionals). The obtained results were analyzed using descriptive and inferential statistics. The associations between participants’ characteristics and knowledge about the importance of nutrition in disease prevention and treatment, the assessment of nutritional status in older adults, and clinical nutrition were analyzed using multiple linear regression models.ResultsParticipants’ overall knowledge of nutrition guidelines for older adults was moderate in both groups, with healthcare professionals scoring a median of 7.0 (IQR = 1.0) and non-healthcare professionals scoring a median of 6.0 (IQR = 2.0). Compared to non-healthcare professionals, healthcare professionals had lower knowledge about the importance of nutrition in disease prevention and treatment (β = − 0.16; p = 0.024). No statistically significant differences were found between healthcare and non-healthcare professionals in the level of knowledge about the assessment of nutritional status in older adults (β = − 0.02; p = 0.769) and clinical nutrition (β = 0.08; p = 0.267).ConclusionsThis study highlights gaps in knowledge regarding dietary guidelines for older adults among healthcare and non-healthcare professionals working with this specific population group. These findings suggest that targeted educational programs might be needed to improve understanding of geriatric nutrition.

Dose-response analysis of music intervention for improving delirium in intensive care unit patients: A systematic review and meta-analysis.

Delirium is a common and severe condition among adult intensive care unit (ICU) patients. Music intervention, as a non-pharmacological approach, has the potential to reduce delirium, but the optimal dosage and type of intervention remain unclear. To explore the effects of music intervention at different doses and types on reducing delirium in ICU patients. This study was conducted as a systematic review and meta-analysis. Databases including Cochrane Library, EBSCO, Embase, PubMed, Web of Science, Airiti Library, China National Knowledge Infrastructure and Wanfang Data were searched until 29 February 2024. Study quality was assessed using the Cochrane Risk of Bias 2.0 criteria. Data were analysed using RevMan 5.4.1 and Comprehensive Meta-Analysis 3.0. Fourteen studies involving 1434 ICU patients were included. Four studies were of good quality (low risk of bias), seven were of moderate quality (unclear risk) and three were of low quality (high risk). Pooled analysis showed that music interventions significantly reduced the risk of delirium (12 studies, RR = .49, 95% confidence interval [CI] [.40, .61]). Slow-tempo music had the strongest effect (11 studies, RR = .46, 95% CI [.37, .57]). The optimal intervention dosage involves conducting music interventions twice daily (12 studies, RR = .46, 95% CI [.34, .63]), with each session lasting 30 min (12 studies, RR = .41, 95% CI [.30, .55]). Additionally, a pooled analysis showed that a 7-day music intervention (6 studies, RR = .43, 95% CI [.26, .71]) was the most effective in reducing the risk of delirium. Music intervention reduces delirium in ICU patients, especially with two 30-min sessions daily for 7 days. However, the certainty of evidence is low, highlighting the need for further high-quality research. Music intervention is a simple, non-invasive method that may help reduce delirium in ICU patients. However, given the low certainty of the current evidence, it should be used cautiously, and further research is needed to validate its effectiveness before routine implementation.

Referral for Diabetes Self-Management Education and Support in Adult Primary Care: An Integrative Review.

The purpose of this integrative review was to identify effective diabetes self-management education and support for increasing adult primary care referrals, participation rates and improving health outcomes for persons with diabetes. Integrative review. A systematic literature search of PubMed/MEDLINE, Embase and CINAHL was performed by applying the PRISMA guidelines. Following Whittemore and Knafl's method, 11 papers were included for review. Integration of diabetes self-management education and support in primary care clinics and a multifaceted approach resulted in improved referral and participation rates, ameliorated glycated haemoglobin A1C and boosted patient, provider and staff satisfaction. Patient-centred multifaceted interventions can boost current diabetes self-management education referrals and participation rates and enhance health outcomes for persons with diabetes. Nurses in their role as primary care providers, diabetes educators and clinic staff are well-positioned to undertake this intervention. Further investigation is needed to explore the impact of these interventions among individuals with type 1 diabetes, gestational diabetes and those living across various global regions. Along with other healthcare providers, nurses are qualified to advocate for, and lead programmes that increase referrals for persons with diabetes to improve health outcomes. Additionally, as primary care providers, nurse practitioners are well placed to positively impact the outcomes of individuals with diabetes by referring them to diabetes self-management education. Nurses, as diabetes educators, are well positioned to implement diabetes self-management education which can improve patient outcomes. Improved referral of persons with diabetes to diabetes self-management education and increased participation have the propensity to contribute to the achievement of positive health outcomes for individuals living with Type 2 Diabetes. There is no patient or public contribution for this review.

Young adults as paid care workers: gendered and classed transitions, trajectories, and experiences

ABSTRACT This article brings a youth lens to the study of care by empirically examining the accounts of young adults who pursue paid adult social care employment. The youth lens includes drawing on youth studies – particularly youth transitions – literature, which is combined with paid care work scholarship in a novel way. Young adults’ experiences as paid care workers are peripheral in youth studies and care work scholarship, despite this work’s increasing prevalence. The article examines the experiences of young adults pursuing, starting out and doing this work, through qualitative empirical research in Teesside, north-east England. A key finding of young people’s unpaid caring for adults influencing their pursuit of paid adult social care work is identified. The article contributes to understanding of youth transitions, particularly in relation to care work, and offers insights regarding the reproduction and sustainability of the paid adult social care workforce. It augments the growing sociological literature of Teesside [Shildrick, T., R. MacDonald, C. Webster, and K. Garthwaite. 2012. Poverty and Insecurity: Life in Low-Pay, No-Pay Britain. Bristol: Policy Press], and converses with work that foregrounds care work’s gendered and classed dimensions [Skeggs, B. 1997. Formations of Class and Gender: Becoming Respectable. London: Sage; Stacey, C. L. 2011. The Caring Self: The Work Experiences of Home Care Aides. Ithaca: Cornell University Press].

DOP004 Proactive fecal calprotectin testing in ulcerative colitis: Initial results of the PROMOTE UC study

Abstract Background Fecal calprotectin (FC) is a biomarker of mucosal inflammation widely used in the management of inflammatory bowel disease (IBD). Given the convenience of home-based FC testing, we hypothesized that intensive, proactive FC monitoring would prevent symptomatic ulcerative colitis (UC) flares by detecting elevated FC levels prior to symptom onset and allowing clinicians to optimize therapy. Methods This prospective, multicenter, randomized, observational clinical trial evaluated intensive home-based, FC testing (IBDoc, Bühlmann Laboratories) versus usual care in adults with UC in clinical remission, defined as a modified partial Mayo score (mpMayo) ≤2 with no rectal bleeding. Patients in the intervention arm used the home testing kit every 2 months for 18 months or until symptomatic flare. The decision to modify therapy based on an elevated FC result was left to the discretion of the attending physician. Patients in the control group were followed according to usual care for 18 months or until symptomatic flare. Clinical data were collected at baseline and every 6 months. The primary endpoint was the time to symptomatic flare, defined as an increase in mpMayo ≥2 points from baseline or a rectal bleeding score ≥1. Results A total of 584 patients were followed at 14 sites in Canada and Australia until symptomatic flare or end of study. Demographics were similar between the control (n=293) and intervention arms (n=291), including mean age (41.9 vs 41.9 years), sex (46.8% vs 49.1% male), disease duration (1.61 vs 1.44 years), and mean mpMayo (0.39 vs 0.40) (Table). At study end, the flare rate of 30.9% in the intervention arm with proactive monitoring was slightly lower than the flare rate of 32.8% in the control arm (median follow-up 549 and 562 days, respectively). Overall, HR for flare in the intervention vs control arm was 1.01 (95% CI: 0.76, 1.34; p=0.96) (Figure). Risk for flare was also similar when analyzed by disease extent (proctitis: 1.13 [0.60, 2.14, p=0.71]; left-sided disease: 0.99 [0.61, 1.58, p=0.95]; pancolitis: 0.96 [0.60, 1.53, p=0.86]) or biologic use (biologics: 1.29 [0.86, 1.95, p=0.22], non-biologics: 0.78 [0.52, 1.18, p=0.24]) at baseline. Conclusion In this large, prospective clinical trial, approximately one-third of patients with UC in clinical remission developed a symptomatic flare within 18 months. Longitudinal proactive FC monitoring was not associated with a reduction in clinical flares. Further study is needed to determine the utility of home-based FC testing in guiding the management of UC.

N13 Development of an interactive vaccination guide for Canadian Inflammatory Bowel Diseases nurses to use with immunosuppressed patients with IBD: Insights into the process & practical applications

Abstract Background Inflammatory Bowel Disease (IBD) is a chronic, immune-mediated condition requiring complex management, often with immunosuppressive therapies. These therapies increase infection risk, making vaccination vital. Given the complexities of immunosuppressive therapies and vaccine considerations, IBD nurses need support to provide vaccination-related guidance to patients. The Canadian IBD Nurses (CANIBD) group developed an interactive vaccination guide to support IBD nurses in this role and shares the process, lessons learned, and practical applications. Methods The interactive vaccination guide, developed by CANIBD and infectious disease specialists, is a web-based resource hosted by Crohn’s and Colitis Canada (https://canibdvaccination.ca/). With greater access to technological resources, such as computers-on-wheels and electronic tablets, the paper-based format became under-utilized. Transitioned to an interactive web-based format in 2024, the guide was redesigned to optimize usability. The development process involved a scoping review of updates in vaccination, including COVID-19 vaccination guidelines. This review was conducted by 2 IBD nurse practitioners and 2 infectious disease specialists in pediatric and adult care. The CANIBD board members approved a budget for web development after reviewing a business proposal. The project took 12 months to complete, involving multiple virtual meetings among collaborators and web designers. Results The vaccination guide includes updated content on: 1) identifying immunocompromised patients; 2) live vaccines; 3) inactivated vaccines; 4) COVID-19 vaccines; 5) travel vaccines; and 6) vaccinations for family members of immunocompromised patients. Designed for ease of use, the guide enables IBD nurses to provide timely, real-time vaccination support to patients and families. It ensures appropriate and comprehensive care plans for immunocompromised patients and is regularly updated as new data emerges. Conclusion The vaccination guide has proven valuable for IBD care. Its interactive, question-based design simplifies vaccination recommendations, supporting patients and families in staying protected. By incorporating the latest vaccine updates and addressing family vaccination needs, the guide reduces infection risk, enhances patient care, and reinforces CANIBD’s commitment to advocacy and healthcare collaboration. Future plans include evaluating the guide’s usability and expanding its reach to other healthcare providers, such as physicians and pharmacists.

Prevalence and mortality associated with multidrug-resistant infections in adult intensive care units in Argentina (PREV-AR).

This study is registered with ClinicalTrials.gov as NCT06574776.

P0818 Addressing unmet needs in adult Inflammatory Bowel Disease care

Abstract Background Many patients with Inflammatory Bowel Disease (IBD) are living with unmet needs. Diet and mental health are two areas where IBD management is often reported by patients to be suboptimal, often resulting in patients self-imposing restrictions to their diet and social life to reduce symptoms, despite these efforts often reducing their quality of life further1. Optimal patient management requires holistic care provided through a specialist Multidisciplinary Team (MDT)2; however, a recent IBD report3 in the United Kingdom (UK) found adult IBD services to be lacking certain members of the MDT, especially dietitians and psychologists. Methods Observational cross-sectional study. Two self-administered surveys, one for patients and one for clinicians, were advertised through the Crohn’s and Colitis UK (CCUK) website, social media platforms of CCUK and National Institute for Health and Care Research, Applied Research Collaboration, East Midlands (NIHR ARC EM) and the researchers’ professional networks. Patients with IBD aged ≥18 years and clinicians working in an IBD MDT were identified through convenience sampling. The Statistical Package for Social Sciences (v27) was used for statistical analysis. A P-value <0.05 was considered statistically significant. Results 91 patients and 16 IBD clinicians completed the surveys. The characteristics of the survey participants can be found in table 1. 29 (32%) patients had seen a dietitian as part of their care and just 2 (2%) patients reported having seen a psychologist. This is unsurprising given 99% of patients reported that they had never been, or had the option to be, referred for psychological support. 95% of patients felt that their mental health is at least sometimes linked to their diagnosis of IBD. The majority of clinicians stated that they routinely discussed diet and mental health in consultations; however, the opposite was reported by patients. Clinicians reported that it is a challenge to meet the holistic needs of their patients (13, 81%) and often did not feel equipped to address diet and mental health concerns, primarily due to limited resources and a lack of knowledge and training in these areas. 81% of the clinicians felt dissatisfied with the current care they provide to their patients. Conclusion The unmet needs reported by patients is highlighted by the discrepancy between the experience of care provision reported by clinicians and patients. Further research is required to explain why this discrepancy exists and to explore ways to bridge these gaps therefore improving patient experience and potentially outcomes1,4. For effective provision of person-centred care, complete, holistic IBD teams are required.

Evaluation of Clinically Integrated Community Health Worker Support Interventions for Adults With Cardiovascular Disease: A Literature Review Guided by the PRISM Framework.

Chronically ill individuals with cardiovascular diseases (CVDs) have been extensively challenged by the complexities of disease management. Although clinically integrated community health worker (cCHW) support interventions have been increasingly implemented to help manage CVDs, a comprehensive analysis of interventions implemented in real-world settings is lacking. Additionally, the influence of contextual factors (eg, patient/organization characteristics) on such interventions is underexplored. Guided by the PRISM framework, the purpose of this review is to understand cCHW interventions supporting individuals with CVDs in the clinical settings. PubMed, CINAHL and APA PsycInfo databases were searched using the following primary keywords: (community health worker), (integrat*), (chronic) and (cardiovascular disease). Studies investigating the integration of CHWs in the care of adults with CVD published from inception to 2023 were included. A total of 25 studies were included in the review. Majority of studies (n=23) measured intervention effectiveness and often positively impacted outcomes, including blood pressure and chronic disease control. Compared to effectiveness, the rest of the RE-AIM domains were underexplored. cCHW programs have demonstrated some evidence in improving health outcomes in individuals with CVD. However, less is known about their impact on other relevant multidimensional RE-AIM outcomes.

Patient-Centered Care for Adolescents and Young Adults with an Uncertain or Poor Cancer Prognosis: A Secondary Analysis of What Is Needed According to Patients, Caregivers, and Healthcare Providers

Patient-centered care focuses on aligning healthcare with a person’s values and preferences to support their health and life goals. This approach is especially crucial among adolescents and young adults (AYAs—with a primary cancer diagnosis between the ages of 18 and 39) facing an uncertain or poor cancer prognosis (UPCP), whose care needs differ from those undergoing curative treatment. This study aims to gain insights from AYAs with a UPCP, their informal caregivers, and healthcare professionals (HCPs) to define optimal patient-centered care and identify barriers to its implementation. We conducted semi-structured interviews with 46 AYAs, 39 informal caregivers, and 49 HCPs from various clinical backgrounds. Findings highlighted the need of AYAs for an equal relationship with HCPs and active involvement in decision-making, alongside tailored information addressing their unique challenges. Informal caregivers expressed the need for information to support patients while preferring a minimal focus on themselves. HCPs noted the necessity for specialized training to meet the specific needs of AYAs with a UPCP, reporting difficulties in providing tailored support due to the disease’s uncertainties. This study’s results can lead to improved healthcare for this population and enhance educational modules for HCPs, equipping them to better support AYAs facing a UPCP.