State Level Research Articles

Public health use and lessons learned from a statewide SARS-CoV-2 wastewater monitoring program (MiNET)

The global SARS-CoV-2 monitoring effort has been extensive, resulting in many states and countries establishing wastewater-based epidemiology programs to address the spread of the virus during the pandemic. Challenges for programs include concurrently optimizing methods, training new laboratories, and implementing successful surveillance programs that can rapidly translate results for public health, and policy making. Surveillance in Michigan early in the pandemic in 2020 highlights the importance of quality-controlled data and explores correlations with wastewater and clinical case data aggregated at the state level. The lessons learned and potential measures to improve public utilization of results are discussed.The Michigan Network for Environmental Health and Technology (MiNET) established a network of laboratories that partnered with local health departments, universities, wastewater treatment plants (WWTPs) and other stakeholders to monitor SARS-CoV-2 in wastewater at 214 sites in Michigan. MiNET consisted of nineteen laboratories, twenty-nine local health departments, 6 Native American tribes, and 60 WWTPs monitoring sites representing 45 % of Michigan's population from April 6 and December 29, 2020. Three result datasets were created based on quality control criteria. Wastewater results that met all quality assurance criteria (Dataset Mp) produced strongest correlations with reported clinical cases at 16 days lag (rho = 0.866, p < 0.05).The project demonstrated the ability to successfully track SARS-CoV-2 on a large, state-wide scale, particularly data that met the outlined quality criteria and provided an early warning of increasing COVID-19 cases. MiNET is currently poised to leverage its competency to complement public health surveillance networks through environmental monitoring for new and emerging pathogens of concern and provides a valuable resource to state and federal agencies to support future responses.

Regional ambassadors or state agents? Representing Welsh interests in the British Parliament and Cabinet

ABSTRACT Despite devolution, the United Kingdom possesses no mechanism to represent its four nations at the state level. Consequently, some peripheral actors use their state representative positions to ‘stand up’ for Wales, Scotland or Northern Ireland. This paper explores this paradox by focussing on the descriptive and substantive representation of Wales in the Commons and the Cabinet between 1945 and 2019. We demonstrate that only one-third of Welsh backbenchers still adopt a role of ‘regional ambassador’ and that Welsh ministers tend to adopt the role of ‘state agent’. This research ratifies the radical disconnection between central and sub-state politics since devolution.

Lung Cancer Screening: Early Detection Decreases Mortality.

Lung cancer remains the number one cancer related mortality in the United States . While it is the third most diagnosed cancer, it is often found at an advanced stage. Survival rates for stage I lung cancer are above 70% while survival rates for stage IV lung cancer are less than 10% at five years. Methods to detect lung cancer at an earlier stage when it can be more effectively treated have been investigated for many years. These included regular chest x-rays (CXRs) and sputum samples. Unfortunately, these testing modalities did not show any benefit. This changed in 2011 when data from the National Lung Screening Trial were published. This landmark trial showed conclusively that a low-radiation dose chest computed tomography scan (LDCT) performed annually in patients with a heavy smoking history reduced lung cancer related mortality by 20%. These results have led to a nationwide effort to increase lung cancer screening. While the number of eligible patients that are being screened on a national level remains modest, significant efforts are being made at the state and local levels to increase awareness and to improve screening. These efforts have also targeted underserved areas and are focused on reducing disparities in access.

An imminent need for veterinary medical educators: are we facing a crisis?

A potential emerging shortage of veterinary medical educators requires the profession to acknowledge and understand the factors leading to this outcome. Expanding class sizes within existing schools and colleges of veterinary medicine and the expected expansion of new programs seeking AVMA-Council of Education accreditation have heightened the need to address an impending shortage of veterinary medical educators. A solution-oriented approach that accurately projects educator workforce needs and identifies factors contributing to the shortage requires effective collaboration across various partnering organizations to develop innovations in pedagogy and educational delivery methods. The veterinary profession must also identify and reduce disincentives that deter students and post-DVM trainees from pursuing careers in education. Finally, efforts at the state and federal level are critical to advocate for financial support and incentives for expansion of the veterinary medical educator workforce. Through these collective approaches and partnerships, the veterinary medical educator workforce can be strengthened to overcome obstacles for educating the next generation of veterinarians to meet societal needs.

Engagement of Peer Educators from India’s National Adolescent Health Programme for the COVID-19 response activities: Qualitative findings from i-Saathiya study

BackgroundThe COVID-19 pandemic strained India’s healthcare system and health workers unprecedentedly.PurposeThe extent of the contribution by peer educators (PEs) from India’s National Adolescent Health Programme-Rashtriya Kishor Swasthya Karyakram (RKSK) to...

Climate change adaptation attributes across scales and inter-institutional networks: insights from national and state level water management institutions in India

Effective climate change adaptation requires cohesive inter-institutional networks across different scales, facilitating the sharing of data, information, knowledge, and practices. However, the impact of adaptation attributes across scales is poorly understood due to limited focus on these networks. Based on interviews with 26 institutions operating at the national level (ION) in India and 26 institutions operating within a state (Himachal Pradesh) (IOS), this study analysed adaptation attributes and the inter-institutional networks across the two scales to understand its implications at different scales. IONs have a greater capacity (compared to IOS) to frame guidelines, standards and regulations for practitioners along with better accessibility to resources and information. When coupled with bridging institutions, this can enhance adaptive capacities at other scales. Conversely, learnings from low regret adaptive measures being implemented by IOS are opportunities for informing national policy strategies. While national adaptation strategies and goals can inspire adaptation at lower scales, the currently fragmented inter-institutional network in India reduces the passage and accessibility of data and information, creating a bottleneck for the smooth devolution of adaptation attributes. Recruitment and deployment practices for water officials further entrench silo attitudes, impeding essential data accessibility. Adaptation needs comprehensive networks across vertical, horizontal, and diagonal institutional connections to improve climate risk perception and strategy implementation. Policy measures should consider socio-institutional factors beyond legislative prescriptions.

Building digital resilience in the training of national security professionals and teachers of the «Defence of Ukraine»

The article reveals the peculiarities of forming digital resilience of national security specialists and teachers of the «Defense of Ukraine» as an important factor in countering modern challenges and threats, ensuring stable development of society and protecting its digital future. It is noted that specialists should identify sources of threats to the country's information space and apply mechanisms to discredit them, as well as take into account the focus of the enemy's destructive actions on vulnerable groups through social networks and targeted advertising. It is emphasized that the formation of digital resilience can be quite effective when studying the educational component «Strategic Communications»”, during which future national security specialists and teachers of the «Defense of Ukraine» study such key elements of this type of communication as informing, influencing and persuading; information efficiency; coordination and deconfliction; «communication by action” and reducing the gap in the «say-do» construct. Building digital resilience in national security professionals and teachers of the Defence of Ukraine involves mastering the skills of creating their own and using specialized critical platforms and tools necessary to identify and counter hybrid threats. Attention is focused on the mechanisms of digital resilience formation as a concept of «Society 5.0», which has become a kind of theoretical challenge to the socio-economic and socio-cultural transformations that occur as a result of the total introduction of digital technologies. It is noted that in the context of the problem under study, there is a risk of uneven development of digital media by people, which actualizes the need to introduce mechanisms to intensify adaptive processes at the state level.

Shared responsibility or not? A responsibility messages experiment during a cyber crisis in designing for risk communication

Responsibility awareness is a vital component of several countries’ crises preparedness policies. In recent years there has also been a formal shift in responsibility, from state level to regional and local levels, as well as to households. The shift is emphasized in risk communication activities targeted at the citizens. However, even with the close connection between risk communication and responsibility for risk prevention and preparedness measures, surprisingly little is known about the relationship between communicating responsibility, and the effects on responsibility awareness and self-preparedness. The aim of the study is to identify how citizens’ reception of responsibility messages concerning a crisis event, influence how residents view their own responsibility awareness and self-preparedness intent. In our study we selected a cyber-crisis scenario as a case to prepare for. A post-test only quasi-experimental cross-sectional survey research design conducted on data collected from 3395 survey participants of the Citizen panel revealed that the responsibility messages with the government taking almost all the responsibility, does not lead to a decrease in the citizens’ own responsibility awareness, and that a responsibility message with shared responsibility but also a message where the citizen is left to their own devices, both lead to an increased own responsibility awareness. However, neither of the responsibility messages lead to an increased self-preparedness intent.

Leveraging machine learning to generate a unified and complete building height dataset for Germany

Building geometry data is crucial for detailed, spatially-explicit analyses of the building stock in energy systems analysis and beyond. Despite the existence of diverse datasets and methods, a standardized and validated approach for creating a nation-wide unified and complete dataset of German building heights is not yet available. This study develops and validates such a methodology, combining different data sources for building footprints and heights and filling gaps in height data using an XGBoost machine learning algorithm. The XGBoost model achieves a mean absolute error of 1.78 m at the national level and between 1.52 m and 3.47 m at the federal state level. The goal is proving the applicability of the methodology at a large scale and creating a useful dataset. The resulting dataset is thoroughly evaluated on a building-by-building level and spatially resolved statistics on the quality of the dataset are reported. This detailed validation found that the building number and footprint area of German building stock is 90.31 % and 94.84 % correct, respectively, and the building height accuracy is 0.59 m at the national level. However, errors are not homogeneous across Germany and further research is needed into the impact of including additional datasets, especially for regions and building types with lower accuracies. This study proves that the chosen methodology is useful for generating a building height dataset and the workflow, with some modifications for regional data availability, can be transferred to other countries. The generated building dataset for Germany constitutes a valuable data basis for the research community in fields such as energy research, urban planning and building decarbonization policy development.

C. auris and neighborhood socioeconomic vulnerability in the state of Maryland from 2019 to 2022.

Candida auris is an emerging fungal pathogen increasingly recognized as a cause of healthcare-associated infections including outbreaks. We performed a mixed-methods study to characterize the emergence of C. auris in the state of Maryland from 2019 to 2022, with a focus on socioeconomic vulnerability and infection prevention opportunities. We describe all case-patients of C. auris among Maryland residents from June 2019 to December 2021 detected by Maryland Department of Health. We compared neighborhood socioeconomic characteristics of skilled nursing facilities (SNFs) with and without C. auris transmission outbreaks using both the social vulnerability index (SVI) and the area deprivation index (ADI). The SVI and the ADI were obtained at the state level, with an SVI ≥ 75th percentile or an ADI ≥ 80th percentile considered severely disadvantaged. We summarized infection control assessments at SNFs with outbreaks using a qualitative analysis. A total of 140 individuals tested positive for C. auris in the study period in Maryland; 46 (33%) had a positive clinical culture. Sixty (43%) were associated with a SNF, 37 (26%) were ventilated, and 87 (62%) had a documented wound. Separate facility-level neighborhood analysis showed SNFs with likely C. auris transmission were disproportionately located in neighborhoods in the top quartile of deprivation by the SVI, characterized by low socioeconomic status and high proportion of racial/ethnic minorities. Multiple infection control deficiencies were noted at these SNFs. Neighborhood socioeconomic vulnerability may contribute to the emergence and transmission of C. auris in a community.

The Aerogeophysical Atlas of Tocantins State: Synthesis of Magnetic Anomaly And Radioelement Maps With Emphasis on Regional Signatures and the Serra Da Cangalha Impact Structure

The Tocantins State Aerogeophysical Atlas (TSAA) is an institutional product of the Geological Survey of Brazil. It is aimed at promoting the use of airborne magnetic and gamma-ray spectrometry data to support geophysical and geological research at state level. Here, we present a synthesis of the TSAA with special emphasis on the interpretation of the magnetic (Anomalous Magnetic Field, First Vertical Derivative (FVD), and Total Gradient Amplitude (TGA) images) and radiometric (RGB composite color map of concentrations, Inverse Images of K, eTh, and eU, and Normalized eU enhancement) map. In particular, the radiometric data for the Serra da Cangalha impact structure in northeast Tocantins are discussed. For Tocantins State, the results show that the radiometric and/or magnetic signatures of geological units (e.g., Mosquito Formation basalts; granite-gneiss/migmatite terrains) and structural features (e.g., dykes and lineaments), or related exogenous deposits (Serra Geral do Tocantins quartzose soils; alluvial deposits of main drainage channels) can be visualized well on regional-scale maps. Analysis of radiometric ratios for the area of the Serra da Cangalha impact structure indicates that eU concentrations are enriched in the annular basin around the central uplift structure, and in the zone straddling the contact between the Piauí and Pedra de Fogo formations. In the latter case, the elevated eU concentrations could be related to brecciated chert layers or silicified sandstones.

Feasibility and Growth Dynamics of Mustard Farming in Uttar Pradesh and Bundelkhand Region of U.P. India

Bundelkhand is a region of central India lying in Uttar Pradesh and Madhya Pradesh. It is one of the least socio-economically developed regions of the country mainly due to regular incidence of drought and erratic rainfall. Mustard is one of the most important oilseed crop of rabi season for Bundelkhand region on the basis of area under the crop. With the limited resources, there has been a noticeable change in the area, production and productivity of mustard. Apart from edible oil, it also has industrial use in producing items like varnishes, soaps, paints, hydrogenated oil, perfumery, lubricants, etc. The study is an attempt to examine the pattern of growth, instability, cost and return of production of mustard crops at state (Uttar Pradesh) and regional (Bundelkhand region of Uttar Pradesh) level. Study is based on secondary data obtained from various published sources. Compound Annual Growth Rate, coefficient of variation, Commission for Agricultural Costs &amp; Prices (CACP) cost concept and returns were used as analytical tools to assess the financial suitability and performance of the crop in both the Uttar Pradesh and Bundelkhand region. It was observed that the growth in area (2.94%) and production (4.36%) of mustard crop in Bundelkhand region was increasing at a higher rate as that of Uttar Pradesh. Higher net return was earned by the farmer growing mustard in Uttar Pradesh than the farmer of Bundelkhand region.

Impacts of COVID-19 shelter in place across key life domains among immigrant farmworker Latina mothers and young adults

ObjectiveIndividuals and families from racial and ethnic groups experience social and economic disadvantage making them vulnerable to the disproportionate impact of the COVID-19 pandemic. This study sought to capture the impacts of Shelter in Place (SIP) across key life domains including family life, education, work, mental health, and coping strategies among a sample of Mexican-origin mothers who were currently engaged in agricultural work, or whose spouses were engaged in agricultural work, and young adults who had a parent working in agriculture.MethodDuring the summer of 2020, while California was under SIP orders, we conducted three virtual focus groups using Zoom(r). We recruited focus group participants from the Center for the Health Assessment of Mothers and Children of Salinas (CHAMACOS), an ongoing, 20-year, longitudinal cohort study of Mexican-origin families in a predominantly agricultural area of California. Three focus groups were conducted with mothers (n = 9), mean age = 48 years, young adult women (n = 8) and young adult men (n = 5), mean age = 18 years, respectively.ResultsMothers reported high levels of stress stemming from fear of Covid-19 infection, work instability and financial concerns, children’s schooling, anxiety about an uncertain future, and the demands of caretaking for dependents. Adverse mental health impacts were particularly pronounced among participants experiencing multiple adversities pre-dating the pandemic, including unemployment, single motherhood, and having undocumented family members. For young adults, work instability and varying work hours were also a source of stress because they made it difficult to make decisions about the future, such as whether to attend college or how many classes to take. Families used coping strategies including expressing gratitude, focusing on what’s under one’s control, familismo, and community engagement to manage mental health challenges during SIP.ConclusionIn the event of future pandemics or disasters, particular attention is needed to those who experience unemployment, are undocumented and/or have undocumented family members, and/or are single parents facing economic adversity. During public health emergencies, action at the local, state, and national level is needed to support farmworkers and other vulnerable groups’ secondary major stressors stemming from inequities in access to affordable housing, childcare, living wages, healthcare, and other benefits.

Cross-sectional description of hospital pharmacy services in Puerto Rico in 2022 using the Practice Advancement Initiative 2030 Self-Assessment Tool.

In an effort to expedite the publication of articles, AJHP is posting manuscripts online as soon as possible after acceptance. Accepted manuscripts have been peer-reviewed and copyedited, but are posted online before technical formatting and author proofing. These manuscripts are not the final version of record and will be replaced with the final article (formatted per AJHP style and proofed by the authors) at a later time. The American Society of Health-System Pharmacists (ASHP) developed the Practice Advancement Initiative 2030 (PAI 2030) to support the continuous improvement of hospital pharmacy services in the United States. Puerto Rico (PR) hospitals' level of compliance with PAI 2030 recommendations is not currently known. The primary objective of this study was to describe the hospital pharmacy scenario in PR in the 5 areas addressed in PAI 2030 recommendations. Through a collaboration between the state affiliate, a school of pharmacy, and ASHP, completion of the PAI 2030 Self-Assessment Tool was promoted among hospital pharmacy directors between August 2022 and March 2023. A total of 18 out of 66 hospitals completed the survey. The results were compared with national data provided by ASHP from 163 US hospitals. Areas where PR hospitals rated high were in PAI 2030 domain A (Pharmacy Technician Role, Education, and Training) and domain E (Pharmacist Leadership in Medication Use and Safety). PR hospitals rate their performance lower in domain A (Patient-Centered Care) and domain B (Pharmacist Role, Education, and Training). Specific focus areas for improvement by PR hospitals include pharmacist participation in medication reconciliation, 24/7 access to advanced clinical pharmacy services, expansion of the pharmacist's scope of practice, and training through the Board of Pharmacy Specialties and residency programs. This study illustrates how the PAI 2030 Self-Assessment Tool can be used to benchmark pharmacy services at the state level. We suggest that changes are needed to close the gap between hospital pharmacies working towards optimizing the role of pharmacists in healthcare systems and those still struggling with dedicating staff to well-recognized pharmacist roles and responsibilities.

Effects of various freak waves on dynamic responses of a Spar-buoy floating offshore wind turbine

There are various kind of waves in the actual ocean. Changes on freak wave profiles affect the motion of floating offshore wind turbines (FOWTs) and threaten the operation safety. To investigate this issue, the phase modulation method is used to simulate freak waves in our work. The original freak wave is first generated, then the wave profile is modulated to obtain five other types of freak waves, such as the reversed wave, the high-crested wave, the deep-troughed wave, the fluctuated wave, the elevated wave. A coupled time-domain model of a Spar-buoy FOWT is established to simulate the motion under steady wind and various freak waves. The dynamic responses are analyzed in the time domain, including the three-degree-of-freedom (3-DOF) motions of the floating foundation, the tension of mooring line and the nacelle acceleration. The frequency-domain properties under various freak waves are investigated using wavelet analysis. The effects of various wave profiles are compared with the original freak wave. Freak waves in low sea states are also generated to research their effects on pitch motion in different sea states. Results show that the response peaks increase in the impact region under freak waves. The reversed wave increases the maximum value of the 3-DOF motions, especially in pitch motion, and causes the high-frequency energy core of wavelet plots to move. The dynamic responses under the fluctuated wave combines the properties of increased response peaks at high-crested wave and increased amplitude of low-frequency motions at deep-troughed wave. The elevated wave greatly increases the heave motion of the FOWT. The increase in sea state level causes a nonlinear amplification in the transient oscillation.

Candida albicans PPR proteins are required for the expression of respiratory Complex I subunits.

Pentatricopeptide repeat (PPR) proteins bind RNA and are present in mitochondria and chloroplasts of Eukaryota. In fungi, they are responsible for controlling mitochondrial genome expression, mainly on the posttranscriptional level. Candida albicans is a human opportunistic pathogen with a facultative anaerobic metabolism which, unlike the model yeast Saccharomyces cerevisiae, possesses mitochondrially encoded respiratory Complex I (CI) subunits and does not tolerate loss of mtDNA. We characterized the function of 4 PPR proteins of C. albicans that lack orthologs in S. cerevisiae and found that they are required for the expression of mitochondrially encoded CI subunits. We demonstrated that these proteins localize to mitochondria and are essential to maintain the respiratory capacity of cells. Deletion of genes encoding these PPR proteins results in changes in steady-state levels of mitochondrial RNAs and proteins. We demonstrated that C. albicans cells lacking CaPpr4, CaPpr11, and CaPpr13 proteins show no CI assembly, whereas the lack of CaPpr7p results in a decreased CI activity. CaPpr13p is required to maintain the bicistronic NAD4L-NAD5 mRNA, whereas the other 3 PPR proteins are likely involved in translation-related assembly of mitochondrially encoded CI subunits. In addition, we show that CaAep3p, which is an ortholog of ScAep3p, performs the evolutionary conserved function of controlling expression of the ATP8-ATP6 mRNA. We also show that C. albicans cells lacking PPR proteins express a higher level of the inducible alternative oxidase (AOX2) which likely rescues respiratory defects and compensates for oxidative stress.

A pilot study exploring the effectiveness of binaural beats at reducing anxiety associated with cadaveric dissection.

This study explored the effects of a novel intervention, binaural beats (BB), on anxiety levels of anatomy students during cadaveric dissections and its impact on the learning environment. The study was quasi-experimental, employing a purposive sampling strategy. State (SA) and trait (TA) anxiety levels were measured using the State-Trait Anxiety Inventory during two routine dissection sessions. SA was measured at three time points: at the start, after a 3-min control (silence)/intervention (10 Hz BB) session, and at the end of the dissection. A post-study survey was distributed to the participants to obtain qualitative feedback on their perceptions of BB use during cadaveric dissections. Thirteen female students participated in this study (mean age 19.62 ± 0.65 years). Both control and intervention measures significantly reduced SA levels, with BB demonstrating a greater effect size (Hedges' g = 0.98 for intervention vs. 0.76 for control). SA decreased significantly after the BB intervention (t(12) = 3.78, p = 0.003) and remained low throughout the session, in contrast to the control session, where the reduction post-measure was not sustained (t(12) = -0.64, p = 0.54). Feedback from the post-study survey indicated that most students found the BB intervention effective in reducing their anxiety levels before the dissection. The BB intervention was effective in reducing and maintaining students' SA levels during dissection. Students reported positive experiences with BB. Further investigations are warranted to determine whether the findings of this study can be generalized to larger and more heterogeneous populations.

Passive representation: The effect of affirmative action bans on female representation in law enforcement

AbstractStudies of representative bureaucracy often focus on underrepresented social groups in the public sector and examine the link between passive representation and active or symbolic representation. This study emphasizes that passive representation is not a fixed condition but can be influenced by policy interventions and shaped by historical passive representation. This study proposes hypotheses that affirmative action bans at the state level, which were adopted with an expectation to yield neutral outcomes by proponents, may not lead to neutral outcomes but can disproportionately decrease female representation in law enforcement. It tests hypotheses using both staggered and two‐way fixed‐effects difference‐in‐difference methods with city‐level panel data from 1988 to 2019. The findings indicate that affirmative action bans have decreased female representation in cities with more than 100 sworn officers. This study provides empirical evidence that the absence of affirmative action may result in the decreased representation of underrepresented and marginalized social groups.

Monarchy Institution and Sabah Political Stability

Purpose: The main purpose of this article is to analyse the role of Tuan Yang Terutama Yang di-Pertuan Negeri of Sabah, called 'TYT', as representative of Yang di-Pertuan Agong at the state level in ending the political stalemate in Sabah in the three state elections held in 1985, 1994, and 2018 respectively. Theoretical framework: This study applies the conceptual framework of constitutional monarch in relation to the Sabah Constitution on the role of Tuan Yang Terutama Yang di Pertua Negeri of Sabah or with the acronym of TYT (His Excellency the Head of State) in maintaining political stability in the state. Method: Research methods for this study are based on documentary analysis and interviews; Results and conclusion: The study has found that TYT has played an impressive role in maintaining political stability, and ceasing political impasse in Sabah after the three state elections. Research implications: The research implication of this study is to increase the deep knowledge on the role of constitutional monarch, in particular the TYT of Sabah in safeguarding political stability. Originality/value: The study has contributed meaningful political values, especially in analysing the dynamic role of monarch institution in a democratic country like Malaysia.

Equitable Care for Children With a Tracheostomy: Addressing Challenges and Seeking Systemic Solutions.

Children with medical complexity (CMC) often face significant barriers to accessing care, obtaining appropriate insurance coverage for medical devices, technology, supplies, home nursingand social services. These challenges, when viewed through the lens of social determinants of health, highlight concerns about healthcare inequity. These inequities can impact CMC by limiting access to follow-up appointments, leading to disproportionate use of emergency department services, restricting support services, reducing the quality of medical productsand increasing the likelihood of adverse events. Addressing these concerns requires comprehensive policy changes at both state and federal levels. Achieving successful collaborations between states and federal agencies is particularly challenging and may take months or even years to accomplish. Through an exploratory qualitative approach, this study facilitates a nuanced inquiry into the experiences and systemic challenges encountered by medical professionals and primary caregivers managing CMC who require a paediatric tracheostomy. Qualitative interviews were conducted with 17 health professionals and primary caregivers residing in the United States. A thematic analysis was used to analyse the transcribed interview data. Using exploratory thematic analysis, we identified challenges and opportunities for improvement regarding (a) access to health insurance, (b) procurement of essential medical supplies, (c) logistical constraintsand (d) identifying interim solutions. Building on our findings, we discuss how socioecological factors impact health and quality of life of CMC and families. Additionally, we address the growing gap in quality of care through a comprehensive approach that considers patient needs, regulatory frameworksand affordability. Medical practitioners and healthcare professionals were actively involved in the development, productionand implementation of the research project. These individuals were given the opportunity to review their statements and review the manuscript before publishing. While caregivers did not engage in member checking, each provided their consent before data collection.