Care Financing Research Articles

Mapping the Out-of-Pocket Healthcare Costs for Terminal Cancer Patients across Europe

Abstract Background In many countries, including those with universal health insurance, cost-sharing for healthcare is prevalent, resulting in out-of-pocket expenses for cancer patients. However, the proportion of government contribution to national healthcare expenditure varies across countries. This study aims to determine the prevalence and magnitude of out-of-pocket expenditure among cancer decedents in their final year of life and to assess whether decedents’ characteristics or their country’s welfare regime have a greater impact on out-of-pocket expenditure. Methods SHARE data was analyzed for individuals aged 50 and above from seven European countries (including Israel) who passed away from cancer. Interviews were conducted with the decedents’ family members to gather information about out-of-pocket expenditure on behalf of their deceased relatives. Results The study identified 1,950 cancer decedents with an average age of 74.4 (S.D.=9.39), of which 58.0 percent were male. In their last year of life, 58 percent of the decedents incurred out-of-pocket expenditure on healthcare services. The welfare regime is found to be the primary factor influencing the likelihood of out-of-pocket expenditure, while patients’ characteristics have minimal impact. The proportion of out-of-pocket expenditure varies significantly across welfare regimes, with the highest probability observed in the Continental and Social Democratic regimes and the lowest in the Mediterranean and East European regimes. Conclusions A country’s welfare regime plays a crucial role in determining the generosity of its public healthcare spending and its ability to alleviate the financial burden on the households of cancer patients. Increasing public funding for cancer care may reduce patients’ out-of-pocket expenditure in all countries, particularly in those where out-of-pocket expenditure is the highest. Key messages • A country’s welfare regime significantly impacts the likelihood and magnitude of out-of-pocket healthcare expenditure for cancer patients in their last year of life. • Increasing public funding for cancer care may help reduce the financial burden on patients and their families, particularly in countries with high out-of-pocket expenditure.

Research Priorities of the Oncology Nursing Society: 2024-2027.

To define the Oncology Nursing Society Research Agenda for 2024-2027. An iterative, multiple data sources consolidation through the Research Agenda Project Team. Previous research priorities, literature review, stakeholder survey, and research priorities from other cancer care organizations and funding agencies. 10 evergreen statements articulated foundational values for oncology nurse scientists, and 5 topics emerged as research priorities for the upcoming three years: Advance patient-centric, precision symptom science; provide evidence for safe and effective cancer care delivery models and support of the oncology nursing workforce; describe the impact of the environment on cancer care outcomes; integrate patient navigation into cancer care across the trajectory; and advance the use of innovative methodologies in oncology nursing research. The Oncology Nursing Society Research Agenda is an effective resource for directing the organization's research vision. This foundational document directs funding awards and requests, mentorship, and policy initiatives.

Policy, system and service design influence on healthcare inequities for people with end-of-life chronic obstructive airways disease, their support people and health professionals

BackgroundPeople with end-of-life chronic obstructive pulmonary disease (COPD) experience debilitating physical limitations, with a high mortality rate. Our research has shown health system design and delivery leads to inequitable outcomes. Enabling people with end-of-life COPD, their support people, and health professionals to partner in setting the agenda for resource allocation may inform health service improvement.DesignQualitative methodology utilising focus groups including patients, family, friends, informal support people, health care workers and professionals.MethodsThe analysis, utilising critical theory and Actor-Network theory, positioned people with severe COPD, their support people and health professionals as experts in end-of-life care. Analyses triangulated these perspectives, and were reviewed by the research investigators and an expert reference group.ResultsParticipants (n=74) in seven focus groups reported their experiences of inequity within the healthcare system. Equity was an overarching phenomenon identified by participants, with three specific themes being described: policy design, system design, and service design.ConclusionExperiences of patients, their support people and health professionals as experts in end-of-life COPD care can inform health systems and health service design to address current inequities in funding and delivery of care for end-of-life COPD.

Effects of pay for performance in primary care in an under-registration scenario.

To propose a method for detecting and analyzing under-registration and highlight its potential financial effect in view of the implementation of the Previne Brasil Program. An ecological study was carried out to analyze cytopathological exams in programmatic area 3.1 in the municipality of Rio de Janeiro. The data was collected from the Departamento de Informática do Sistema Único de Saúde (DATASUS - Department of Informatics of the Unified Health System) database, including information on reports from outsourced cytopathology laboratories and those available in the Sistema de Informação em Saúde para a Atenção Básica (SISAB - Health Information System for Primary Care) and the Sistema de Informação do Câncer do Colo do Útero (SISCOLO - Cervical Cancer Information System) of DATASUS/Ministry of Health. The estimated under-registrations per health unit totaled 108,511 exams in the last two years in the programmatic area 3.1 area, which corresponds to an estimated total of R$ 435,129.00 that would have been foregone if the Previne Brasil Program had been in place during the period studied. The article's main contribution lies in the presentation of empirical evidence of the potential effects of under-registration on Primary Health Care financing. In addition, there are two other significant findings - firstly, it highlights weaknesses in the process of recording health information inherent to vulnerable regions; secondly, it indicates a vicious circle potentially fueled by sudden changes in Primary Health Care funding conditions, in addition to potential consequences for other levels of care.

Austerity Measures and the Resilience of Zimbabwe's Healthcare System: Challenges and Solutions.

Austerity measures have become a contentious topic, shaping the landscape of health care systems around the world. As governments grapple with economic challenges, the impact of austerity on health care has emerged as a critical concern. This study focuses on the consequences of austerity actions adopted by the Zimbabwean government under the Transitional Stabilization Program (TSP) from August 2018 to December 2025. This research examines the impact of austerity measures on Zimbabwe's health care sector, exploring its connections with health infrastructure and resources, accessibility and affordability of health care, health funding, health care inequalities, and the health care workforce. Using a quantitative approach and data from 970 participants, including the general populace, health care providers, and government officials, significant positive correlations between austerity measures and these health care variables were identified. The findings indicated a noteworthy positive correlation between the independent variable "austerity measures" and five dependent variables: health care accessibility and affordability, health care inequalities, infrastructure and resources, health care funding, and health care workforce. The t-statistics values exceeded the threshold of 1.96, with values of 5.085, 3.120, 6.459, 8.517, and 3.830, respectively. These findings highlight the importance of considering the effects of austerity on health care access, health funding, health care inequalities, health workforce, health infrastructure and resources development. Policymakers should prioritize equitable resource allocation and targeted investments to strengthen the resilience of the health care system during economic challenges. Understanding these associations is crucial for evidence-based policy decisions and fostering a more equitable and resilient health care system in Zimbabwe.

Cardiovascular equity and health center funding: Associations of unmet hypertension and diabetes need by race/ethnicity and federal grants at federally qualified health centers, 2014-2019.

Racial and ethnic disparities in chronic disease are a major public health priority. To determine if the amount of federal grant funding to federally-qualified health centers (FQHCs) was associated with baseline overall prevalence of uncontrolled hypertension and uncontrolled diabetes, as well as prevalence by racial and ethnic subgroup. Cross-sectional multivariate regression analysis of Uniform Data System 2014-2019, which includes clinic-level data from each FQHC regarding demographics, chronic disease control by race and ethnicity, and grant funding. Our main exposure were the average values of the prevalence of uncontrolled hypertension and uncontrolled diabetes among the overall population and by racial and ethnic group from 2014-2016. Average federal grant funding per patient from 2017-2019, as measured by annual health center funding from the Bureau of Primary Health Care (BPHC) and overall federal grant funding. We analyzed 1,205 FQHCs from 2014-2019; the average BPHC grant per patient across all FQHCs in 2019 was $168 while the average total federal grant was $184 per patient. Increasing shares of total patients with uncontrolled hypertension or uncontrolled diabetes were not associated with increased total federal grant funding in either unadjusted or adjusted analysis. Increased shares of patients who are American Indian or Alaskan Native (AI-AN) with uncontrolled hypertension and diabetes were associated with increasing total federal grant funding in both unadjusted and adjusted analysis (adjusted beta hypertension $168.3, p <0.001; adjusted beta diabetes 59.44, p = 0.02). However, cardiovascular clinical need among other racial and ethnic groups was not significantly associated with grant funding. FQHCs with higher overall rates of uncontrolled hypertension or diabetes do not receive more federal funds, and there is no significant association between federal funding levels and rates of uncontrolled blood pressure or diabetes within most racial and ethnic groups, with the exception of AI-AN populations. To narrow inequities in cardiovascular disease, HRSA should consider more explicitly targeting federal grants to clinics with higher levels of clinical need.

Equitable use of subsidized child care in Georgia

High-quality childcare services are vital to children's development and family wellbeing but are not equitably accessed by all children. In the United States, programs supported by the Child Care and Development Fund (CCDF) have the potential to reduce these inequities. Economically eligible Black children use CCDF-supported services at higher rates than other children, but less is known about disparities in the characteristics of those services. This study uses weekly subsidy records from Georgia's Childcare and Parent Services (CAPS) program to examine racial, ethnic, and geographic differences in the types, modes, quality, proximity, and stability of care and in subsidy payments, co-payments, and subsidy use. The study distinguishes between unconditional differences that it observes in children's experiences and conditional disparities that it estimates after accounting for children's needs and other characteristics. It interprets the conditional disparities as evidence of inequity. The analysis uncovers many unconditional racial and ethnic differences in subsidized care outcomes and several geographic differences. However, the study finds fewer (and mostly smaller) conditional differences, including very few conditional differences between non-Hispanic Black and White children. The results suggest that there is substantial racial equity in participating children's use of CAPS services.

Evidence from an Applied Health Research Question (AHRQ): Describing Bundled Care Use in Ontario among Individuals with Total Joint Arthroplasty from fiscal year 2018-2021.

ObjectiveTo describe clinical pathways and use of the bundled care funding model, where a patient’s treatment and payment is assigned to a group of providers, among individuals who underwent a total joint arthroplasty (TJA) in Ontario. The request for this work was submitted by the Rehabilitative Care Alliance through the Applied Health Research Question (AHRQ) program. ApproachAdults with TJA from April 1st 2018 to March 31st 2022 were included. Demographics, surgical characteristics, inclusion in bundled care, and use of health services were defined using administrative health data. Results were stratified by location of surgery (bilateral or unilateral hip, knee, or shoulder TJA). ResultsAmong 152,135 individuals with TJA during the study period, 71,996 individuals (47.3%) received services through a bundled care approach. Rate of bundled care use was highest among individuals with unilateral knee TJA (52.5% in bundled care), and the lowest among individuals with shoulder TJA (13.4% in bundled care). In fiscal year 2018, 33% of TJA patients used bundled care, in fiscal year 2019, over 50% of TJA patients used bundled care and 55% of TJA patients used bundled care by 2021. Most individuals used bundled care following an inpatient surgery (88.9% of individuals following a unilateral knee TJA) as opposed to a same day surgery (11.1% with a unilateral knee TJA). ConclusionThe purpose of bundled care service delivery is to provide integrated healthcare delivery and therefore improved patient experience and outcomes. Understanding bundled care use may improve healthcare planning and assessment of health services.

A cost-consequence analysis of the Queensland specialist palliative rural telehealth (SPaRTa) service

Background Telehealth can extend the reach of specialist palliative care providers to ensure that patients can access specialist services closer to home. Aim To examine the cost and consequences of the Specialist Palliative Rural Telehealth (SPaRTa) service compared to the traditional non-specialist general practice-based services for people requiring palliative care. Design The costs and outcomes for SPaRTa were compared using cost-consequence analysis principles, with a focus on net benefit and return on investment. Costs were estimated from the perspective of the health service provider for the 2020/2021 financial year, and cost-offsets associated with change in location of death and change in hospital transfers. Setting/participants Patients of the SPaRTa in Queensland Australia. Results During study period 5472 consultations were conducted from four major metropolitan hub sites to regional, rural, and remote areas at a total cost of $4 426 644. When remuneration for consultations, change to location of death and reduction in ambulance transfers were taken into account, the net-benefit to the state health system was $1 244 060, giving a return on investment of $1.28 for every dollar spent. SPaRTa complimented existing local care services, and enabled access to specialist care into the home. Conclusions SPaRTa resulted in potential cost savings for the health service by enabling more convenient access to palliative care services outside of hospital settings. Decisions regarding funding for telepalliative care should consider not only the costs, but also the potential benefits to both the service providers, and the patients and families receiving this care.

Legal Approaches To Addressing The Social Determinants Of Public Health: The Scenario In India

The enhanced scope, services, and rising investment by both public and private entities are driving the rapid and vigorous growth of the Indian healthcare system. Clinical trials, hospitals, medical equipment, telemedicine, health insurance, and medical appliances are all included in the scope of healthcare. Numerous factors, including our residence, heredity, environmental conditions, income, and education, all contribute to the health of individuals and communities and have significant effects on public health care.Environment and circumstances are major factors in determining an individual's state of health as well. For the health care system to be successfully implemented, it must be designed to adhere to specific human rights norms. A strong regulatory framework is essential to achieving favourable results for human health. By enforcing sanitary regulations on things like food safety, abattoir hygiene, and water quality monitoring, it reduces the likelihood of contracting diseases. The result is a shaky human health care system due to wide gaps in the enforcement, monitoring, and evaluation processes. This is also a result of inadequate funding for medical care for people, a lack of dedication and leadership on the part of health professionals, and a lack of community.

Relationship Between Radiation Oncology Department National Institutes of Health Funding and Institutional Community Inclusion/Investment

PURPOSE Disparities in health care access and funding allocation persist among racial minorities and low-income populations. Radiation oncology departments play a crucial role in cancer treatment, yet the extent to which these departments serve historically underrepresented communities following receipt of National Institutes of Health (NIH) funding remains unclear. METHODS Radiation oncology departments awarded NIH funding from 2019 to 2021 were studied using the 2023 Lown Institute Hospital Index rankings for community benefit and inclusivity to assess the relationship between measures of community benefit and inclusivity and NIH radiation oncology department research funding. RESULTS Twenty-two radiation oncology departments were analyzed in this study. A significant positive correlation was identified between the NIH research funding these departments received and their institutional rankings for overall community benefit (tau = 0.38; P &lt; .034). Additionally, there was a trend toward significance for the relationship between NIH funding and institutional rankings for community investment spending (tau = 0.497; P &lt; .053). No significant correlation was observed for other variables, including institutional rankings for charity care spending, Medicaid as a portion of patient revenue or services provided to patients from minoritized groups, low-income backgrounds, or those with lower levels of education. CONCLUSION Our findings indicate a significantly positive correlation between NIH funding received by radiation oncology departments and overall community benefit (measured by spending on financial assistance, community investment, and Medicaid). This suggests that departments receiving NIH funding may be incentivized to allocate resources toward initiatives aimed at improving community health outcomes extending beyond direct patient care.

Health disparities among incarcerated populations: a crucial laboratory and pathology review.

The United States notoriously has one of the highest rates of incarceration in the world, yet scant attention to the health care needs of those incarcerated exists within laboratory medicine and pathology training and education. This article explores health disparities among incarcerated and released individuals regarding diagnostic laboratory testing and pathology services. A literature search was conducted for articles published between 2002 and 2023 using keywords including "healthcare," "incarcerated," "laboratory services," "pathology services," and "health insurance for prisoners." Central themes were extracted and discussed to reveal the realities of health care during and after release from incarceration. Excluded from the analysis were articles about the immediate or extended family of incarcerated persons. Incarcerated individuals have an increased risk for the development and exacerbation of communicable and noncommunicable diseases and mental health disorders, which results in exceedingly high morbidity and mortality rates. Policy changes are needed to mitigate disparities and improve health outcomes for incarcerated and released persons. Central to these disparities is decreased access to laboratory and pathology services, impeded by inadequate health care funding for these carceral institutions. Providing additional funding to the carceral system's health care budget is necessary to improve access to pathology and laboratory services.

A New Approach for Understanding International Hospital Bed Numbers and Application to Local Area Bed Demand and Capacity Planning.

Three models/methods are given to understand the extreme international variation in available and occupied hospital bed numbers. These models/methods all rely on readily available data. In the first, occupied beds (rather than available beds) are used to measure the expressed demand for hospital beds. The expressed occupied bed demand for three countries was in the order Australia > England > USA. Next, the age-standardized mortality rate (ASMR) has dual functions. Less developed countries/regions have low access to healthcare, which results in high ASMR, or a negative slope between ASMR versus available/occupied beds. In the more developed countries, high ASMR can also be used to measure the 'need' for healthcare (including occupied beds), a positive slope among various social (wealth/lifestyle) groups, which will include Indigenous peoples. In England, a 100-unit increase in ASMR (European Standard population) leads to a 15.3-30.7 (feasible range) unit increase in occupied beds per 1000 deaths. Higher ASMR shows why the Australian states of the Northern Territory and Tasmania have an intrinsic higher bed demand. The USA has a high relative ASMR (for a developed/wealthy country) because healthcare is not universal in the widest sense. Lastly, a method for benchmarking the whole hospital's average bed occupancy which enables them to run at optimum efficiency and safety. English hospitals operate at highly disruptive and unsafe levels of bed occupancy, manifesting as high 'turn-away'. Turn-away implies bed unavailability for the next arriving patient. In the case of occupied beds, the slope of the relationship between occupied beds per 1000 deaths and deaths per 1000 population shows a power law function. Scatter around the trend line arising from year-to-year fluctuations in occupied beds per 1000 deaths, ASMR, deaths per 1000 population, changes in the number of persons hidden in the elective, outpatient and diagnostic waiting lists, and local area variation in births affecting maternity, neonatal, and pediatric bed demand. Additional variation will arise from differences in the level of local funding for social care, especially elderly care. The problems associated with crafting effective bed planning are illustrated using the English NHS as an example.

Identifying cost-based quality and performance indicators for home care: a modified delphi method study

BackgroundThis study, part of a multi-study program, aimed to identify a core set of cost-based quality and performance indicators using a modified Delphi research approach. Conceptually, this core set of cost-based indicators is intended for use within a broader health system performance framework for evaluating home care programming in Canada.MethodsThis study used findings from a recently published scoping review identifying 34 cost-focused home care program PQIs. A purposive and snowball technique was employed to recruit a national panel of system-level operational and content experts in home care. We collected data through progressive surveys and engagement sessions. In the first round of surveying, the panel scored each indicator on Importance, Actionable, and Interpretable criteria. The panel set the second round of ranking the remaining indicators’ consensus criteria. The panel ranked by importance their top five indicators from operational and system perspectives. Indicators selected by over 50% of the panel were accepted as consensus.ResultsWe identified 13 panellists. 12 completed the first round which identified that 30 met the predetermined inclusion criteria. Eight completed the ranking exercise, with one of the eight completing one of two components. The second round resulted in three PQIs meeting the consensus criteria: one operational and two systems-policy-focused. The PQIs: “Average cost per day per home care client,” “Home care service cost (mean) per home care client 1y, 3y and 7y per health authority and provincially and nationally”, and “Home care funding as a percent of overall health care expenditures.”ConclusionsThe findings from this study offer a crucial foundation for assessing operational and health system outcomes. Notably, this research pioneers identifying key cost-based PQIs through a national expert panel and modified Delphi methodology. This study contributes to the literature on PQIs for home care and provides a basis for future research and practice. These selected PQIs should be applied to future research to test their applicability and validity within home care programming and outcomes. Researchers should apply these selected PQIs in future studies to evaluate their applicability and validity within home care programming and outcomes.

“Care process into a cash transaction”: medical neoliberalism, Afloat and graphic medicine

ABSTRACT Medical neoliberalism has precipitated a significant shift away from the patient-centric approach to a profit-driven paradigm that prioritises the interests of corporations and shareholders over the well-being of patients. Consequently, there is a shortage of funding for adult social care resulting in compromised service quality. Taking these cues, the article close-reads some sections of Nigel Baines’s Afloat: A Memoir about Mum, Dementia, and Trying Not to Drown (2019) in order to demonstrate how graphic medicine offers multifaceted critique of the NHS and social care arrangements in the UK through nuanced visualisations. Baines deploys a series of visual metaphors to concretise his challenges in quest of an appropriate care arrangement for his dementia-afflicted mother. In particular, Baines deploys thought-provoking board game metaphors (such as the snake and ladder board) and the Yeatsian symbol of gyre to introspect the fine-grained workings of medical neoliberalism and its impact on social care. The article concludes by discussing how Afloat operates as a critical lens exposing the intricacies emblematic of healthcare environments and the deeply rooted vulnerabilities enmeshed within the system.

Palliative care national plan implementation through stakeholder analysis

BackgroundNational palliative care plans depend upon stakeholder engagement to succeed. Assessing the capability, interest, and knowledge of stakeholders is a crucial step in the implementation of public health initiatives, as recommended by the World Health Organisation. However, utilising stakeholder analysis is a strategy underused in public palliative care.ObjectiveTo conduct a stakeholder analysis characterising a diverse group of stakeholders involved in implementing a national palliative care plan in three rural regions of an upper-middle-income country.MethodsA descriptive cross-sectional study design, complemented by a quantitative stakeholder analysis approach, was executed through a survey designed to gauge stakeholders’ levels of interest and capability in relation to five fundamental dimensions of public palliative care: provision of services, accessibility of essential medicines, palliative care education, financial support, and palliative care vitality. Stakeholders were categorised as promoters (high-power, high-interest), latent (high-power, low-interest), advocates (low-power, high-interest), and indifferent (low-power and low-interest). Stakeholder self-perceived category and knowledge level were also assessed.ResultsAmong the 65 surveyed stakeholders, 19 were categorised as promoters, 34 as advocates, 9 as latent, and 3 as indifferent. Stakeholders’ self-perception of their category did not align with the results of the quantitative analysis. When evaluated by region and palliative care dimensions the distribution of stakeholders was nonuniform. Palliative care funding was the dimension with the highest number of stakeholders categorised as indifferent, and the lowest percentage of promoters. Stakeholders categorised as promoters consistently reported a low level of knowledge, regardless of the dimension, region, or their level of interest.ConclusionsAssessing the capability, interest, and knowledge of stakeholders is a crucial step when implementing public health initiatives in palliative care. It allows for a data-driven decision-making process on how to delegate responsibilities, administer financial resources, and establish governance boards that remain engaged and work efficiently.

Old age care fund helps to manage their funds In easy way

Abstract: A Old Age Care Funds is a sort of investment vehicle in which the combined capital of several participants is used to purchase a diverse range of bonds, equities, and other securities. Funds, which are professionally managed, give people the chance to invest in a variety of assets without having to handle them themselves. The value of the Fund shares that investors purchase varies according to how well the underlying assets perform. Funds are well-liked by both rookie and seasoned investors because they offer diversity, liquidity, and expert management. Diverse mutual fund categories, such as stock, bond, money market, and hybrid funds, are available to suit varying investment goals and risk tolerances. Investors can select funds according to their risk tolerance, time horizon, and financial objectives. Securities regulators supervise mutual funds to maintain transparency and safeguard the interests of investors. They are now an essential instrument for people to develop a diversified investment portfolio and engage in the financial markets. Old Age Care Fund portfolio analysis is an important component of investment management that includes a variety of approaches for evaluating the performance, risk, and composition of investment portfolios. The efficient market hypothesis (EMH) states that markets are efficient and reflect all available information, making it difficult for fund managers to regularly outperform the market, according to Malkiel and Fame (1970). Jensen (1968) proposed the Capital Asset Pricing Model (CAPM), which emphasizes risk-adjusted returns and the identification of alpha, which indicates a fund manager’s capacity to create excess returns above the market. IndexTerms – Python, Powet-BI, Data Analysis.

Quality of life outcomes for informal carers of long-term care service users in Austria, England and Finland

PurposeThe provision and funding of long-term care (LTC) for older people varies between European countries. Despite differences, there is limited information about the comparative performance of LTC systems in Europe. In this study, we compared quality of life (QoL) of informal carers of home care service users in Austria, England and Finland.MethodsInformal carers were surveyed in Austria, England and Finland. The study data (n = 835) contained information on social care-related quality of life (SCRQoL) associated with the ASCOT-Carer measure, and characteristics of carers and care recipients from each country. We applied risk-adjustment methods using a fractional regression model to produce risk-adjusted SCRQoL scores for the comparative analysis. In a sensitivity analysis, we applied multiple imputation to missing data to validate our findings.ResultsWe found that the mean values of the risk-adjusted SCRQoL of informal carers in England were 1.4–2.9% and 0.3–0.5% higher than in Finland and Austria, and the mean values of the risk-adjusted SCRQoL of carers in Austria were 0.8–2.7% higher than in Finland. Differences in the mean values of the country-specific risk-adjusted SCRQoL scores were small and statistically non-significant. English informal carers were less healthy and co-resided with care resipients more often than carers in Austria or Finland.ConclusionSmall differences between the risk-adjusted SCRQoL scores between Austria, England and Finland are consistent with the observation that the countries provide different types of support for informal carers. Our results help local and national decision-makers in these countries to benchmark their informal care support systems.

NURS-05. CATALYZING AND INFORMING THE DEVELOPMENT OF MORE COMPREHENSIVE AND ACCESSIBLE PROGRAMS FOR CAREGIVERS OF YOUNG ADULT SURVIVORS OF CHILDHOOD BRAIN TUMORS

Abstract BACKGROUND The chronic and intensive care needs of young adult survivors of childhood brain tumors are most often addressed by their maternal caregivers with limited, specific psychosocial or other programs to reduce caregiving demands and enhance their family management. Using a social ecological perspective, the purpose of this study was to catalyze and inform the development of more comprehensive and accessible programs for caregivers of young adult survivors of childhood brain tumors. METHODS Semi-structured interviews were conducted with 21 maternal caregivers, 6 post baccalaureate students/professional coaches for a problem-solving intervention for maternal caregivers, and 16 neuro-oncology clinical experts using interview guides tailored to their roles and constructed based on the Consolidated Framework for Implementation Science. Qualitative. Interview data were analyzed using content analysis. RESULTS Barriers included: need for internet connected devices (microsystem level); lack of care matched to their identified needs (mesosystem); poor tracking of long-term survivors and lack of survivorship psychosocial services (macrosystem); and lack of supportive health care policies and funding mechanisms for individuals and organizations (exosystem). Facilitators included: web-based platform accessible to the individuals and population (microsystem); widespread acknowledgement regarding gaps in survivorship psychosocial care (mesosystem); partnerships with survivors of childhood brain tumors, caregivers, and organizations that treat them (macrosystem); and dissemination among childhood brain tumor treatment/survivorship programs, healthcare systems, and community organization and endorsement from them (exosystem). CONCLUSIONS Multilevel approaches that address barriers and facilitators for improving health equity for maternal caregivers of young adult survivors of childhood brain tumors incorporate the design and dissemination of accessible, web-based programs designed in partnership with survivors, caregivers, and organizations to build care matched to need, as well as organizational, political, and community advocacy.

ASSESMENT OF ALIGNMENT OF EARLY CHILDHOOD CARE AND EDUCATION CENTRES WITH DEVELOPMENTALLY APPROPRIATE PRACTICE PRINCIPLES

This study evaluates the alignment of 150 Anganwadi centres in Ganjam District, Odisha, with Developmentally Appropriate Practice (DAP) principles. Using an observation schedule, the research assesses infrastructure, resources, and teaching practices to identify challenges and opportunities in DAP implementation. Findings reveal significant infrastructure deficits, particularly the absence of dedicated buildings, which impede the creation of safe and stimulating learning environments. Despite these challenges, centres with adequate resources demonstrated effective DAP alignment, supported by strong parental and community involvement. The study underscores the need for continuous professional development for Anganwadi workers and policy reforms to increase funding and support for Early Childhood Care and Education (ECCE) programs. Cultural integration and tailored educational strategies emerge as essential for creating relevant and engaging learning experiences. The research concludes with recommendations to enhance DAP practices, aiming to improve holistic child development and educational outcomes in the region.