Health Care Providers Research Articles

Tumor Necrosis Alpha (TNF-α) Antagonists Used in Chronic Inflammatory Rheumatic Diseases: Risks and their Minimization Measures.

Tumor necrosis factor alpha (TNF- α) inhibitors are widely employed for the management of chronic inflammatory rheumatism. However, their usage carries significant risks, including site and infusion reactions, serious infections, malignancy, heart failure autoimmune and demyelinating disorders. These risks are comprehensively outlined in risk management plans (RMPs) associated with these molecules. RMP provides information on the safety profile of a medicinal product as well as the measures that will be taken to minimize risks; these are known as risk minimization measures. These measures are divided into routine measures related to elements, such as the summary of product characteristics, labeling, pack size, package leaflet, or legal supply status of the product, while additional measures may include educational programs, including tools for healthcare providers and patients, controlled access or pregnancy prevention programs, among others. Additional measures can consist of one or more interventions that need to be implemented in a sustainable way in a defined target group, while respecting the timing and frequency of any intervention and procedures to reach the target population. An evaluation of the effectiveness of these measures is required to determine whether or not an intervention has been effective. This comprehensive review offers an in-depth exploration of the current treatment, uses, and associated risks of TNF-α inhibitors. Additionally, it provides a detailed account of risk minimization measures and risk management practices while shedding light on their real-world implementation and effectiveness.

Genetic testing and counseling for hypertrophic cardiomyopathy: An evidence-based practice resource oftheNational Society of Genetic Counselors.

Hypertrophic cardiomyopathy (HCM) is a common hereditary condition affecting approximately 1 in 500 adults. It is characterized by marked clinical heterogeneity with individuals experiencing minimal to no symptoms, while others may have more severe outcomes including heart failure and sudden cardiac death. Genetic testing for HCM is increasingly available due to advances in DNA sequencing technologies and reduced costs. While a diagnosis of HCM is a well-supported indication for genetic testing and genetic counseling, incorporation of genetic services into the clinical setting is often limited outside of expert centers. As genetic counseling and testing have become more accessible and convenient, optimal integration of genomic data into the clinical care of individuals with HCM should be instituted, including delivery via genetic counseling. Drawing on recommendations from recent disease guidelines and systematic evidence reviews, we highlight key recommendations for HCM genetic testing and counseling. This practice resource provides a comprehensive framework to guide healthcare providers in the process of genetic test selection, variant classification, and cascade testing for genetic evaluation of HCM.

Prevalence of irritable bowel syndrome in endometriosis patients: A cross-sectional study

ABSTRACT Background: Despite its prevalence, limited research has explored the direct correlation between irritable bowel syndrome (IBS) and endometriosis, particularly in regions like Saudi Arabia. This study aimed to bridge this gap by investigating the prevalence of IBS among endometriosis patients and identifying associated risk factors. Materials and Methods: The study conducted a cross-sectional analysis, it was done at King Abdulaziz University Hospital, Jeddah. From September to December 2023. Women who were diagnosed with endometriosis and aged above 18 years old were included. Results: Our study revealed that 47.8% of endometriosis patients had previously been diagnosed with IBS. Interestingly, Saudi patients exhibited a significantly higher prevalence of IBS compared to non-Saudi individuals. While no substantial link emerged between IBS prevalence and other demographic or endometriosis-related factors, patients with chronic digestive conditions like food intolerance, esophageal reflux, and inflammatory colon diseases showed a higher likelihood of IBS. Conclusions: This study underscores a substantial association between IBS and endometriosis, urging healthcare providers to consider IBS as a potential comorbidity in affected patients. The findings stress the importance of holistic assessments and awareness regarding overlapping symptoms and risk factors. Further research is encouraged to unveil underlying mechanisms and devise optimal management strategies for individuals grappling with both conditions.

Investigating Inappropriate Discontinuations of Enteral Nutrition Related to Gastric Residual Volume in Critically Ill Patients: A Retrospective Observational Descriptive Study

Background: Gastric residual volume (GRV) is measured by nurses in clinical practice as a simple method to assess gastrointestinal intolerance. Nutrition therapy guidelines recommend avoiding enteral tube feeding (ETF) discontinuation if GRV is < 500 mL. Aim: This study aimed to clarify the status of inappropriate ETF discontinuation related to GRV in critically ill patients. Methods: Patients who were ventilated for more than 48 hours in the intensive care unit of a university hospital in 2021 were retrospectively surveyed, and data were collected up to 2 weeks after admission. ETF discontinuation data were collected and categorized as planned or unplanned. The reasons for unplanned discontinuation were further categorized into high GRV, symptoms, and conditions. The reasons and the amount of GRV were analyzed descriptively. Inappropriate ETF discontinuation related to GRV was defined as ETF discontinuation for a GRV of < 500 mL. Results: ETF was discontinued in 10% (270 events / 2,600 orders) of critically ill patients. Unplanned discontinuations accounted for 37% (99/270) of discontinuations, with GRV being the most common reason (43%), followed by nausea and vomiting (8%), and hemodynamic instability (8%). Conclusions: Thirty-seven percent of ETF discontinuations in critically ill patients were unplanned, and 42% of these were inappropriate ETF discontinuations related to GRV. Research results and guideline recommendations need to be disseminated clearly to make more healthcare providers aware of the GRV criteria for discontinuing ETFs.

Thresholds for the value judgement of health technologies in the United Arab Emirates: a consensus approach through voting sessions

BackgroundIn the evolving healthcare landscape of the United Arab Emirates (UAE), establishing cost-effectiveness thresholds (CETs) is pivotal to informing decision-makers about the value of health technologies.ObjectiveThis study aimed to establish...

Perceived patient navigator services and characteristics to address barriers to linkage to hepatitis C care among people released from provincial prison in Quebec, Canada

BackgroundPatient navigation increases linkage to hepatitis C virus (HCV) care following release from prison; however, little is known about the services patient navigators should provide to maximize linkage to care. We aimed to identify perceived barriers and facilitators to linkage to HCV care post-release, and to determine patient navigator services and characteristics best suited to address barriers to linkage to care among people released from prison. MethodsTen semi-structured interviews were conducted with adult (age ≥ 18 years) men living with chronic HCV, released from the largest Quebec provincial prison, and linked to HCV care by a patient navigator. Interviews were guided by the Socio-Ecological Model (SEM) and aimed to explore the multi-level barriers and facilitators to linkage to HCV care post-release. Interviews were audio-recorded, transcribed, and analyzed using a deductive, thematic approach. ResultsThe median age of participants was 54 years. Barriers to linkage to HCV care included competing priorities post-release (e.g., substance use, mental health issues, unstable housing), stigma (related to HCV, injection drug use, and incarceration), and lack of transportation. Facilitators included social support, established relationships with existing healthcare providers, prior cure with direct-acting antivirals, and HCV-related health literacy and knowledge. Perceived essential patient navigator services to enhance linkage included pre-release discharge appointments, housing assistance, and facilitated transportation to HCV appointments. Ensuring a consistent, non-judgemental, and empathetic patient navigator were considered important characteristics; lived experiences of incarceration and/or HCV were not felt to be essential for a patient navigator. ConclusionsInterventions that seek to improve linkage to HCV care for people following release from prison should address many levels (individual, interpersonal, and policy) of the SEM. While people experience several competing priorities post-release, having an empathetic and consistent patient navigator, regardless of their lived experiences of HCV and/or incarceration, may improve linkage to HCV care post-release.

Enhancing nursing students' communication skills with deaf patients: Workshop impact on nursing education programs

BackgroundNursing students require education on effective communication with patients to fulfill their roles as future healthcare providers. Ensuring inclusive patient care requires addressing this educational gap. PurposeThis study assesses the impact of workshops on nursing students' communication strategies with Deaf and hard-of-hearing patients. MethodA cross-sectional survey was conducted among nursing students before and after participating in workshops conducted by Deaf instructors from the non-profit association Maagalei Shema. Data was collected from January 2023 to March 2024 and analyzed using SPSS software. FindingsResults indicate that the workshops significantly improved participants' communication strategies, with 82.48% reporting enhanced abilities post-workshop. The use of communication tools, including professional interpreters, increased following the workshops. DiscussionWorkshops offer an effective approach to enhancing healthcare workers' communication with Deaf and hard-of-hearing patients. These findings underscore the importance of incorporating experiential learning opportunities into nursing education to optimize patient interactions and improve healthcare outcomes.

[Translated article] Approach and management of patients injured by bullfighting trauma

Introduction: Bullfighting festivals are attributed to the cultural idiosyncrasies of the Ibero-American people, posing an extreme risk to the physical integrity of the participants. Spain is considered the country with the highest number of bull-related celebrations worldwide and, therefore, with the highest number of patients injured by bullfighting trauma treated, thus justifying a public health problem. The generalities associated with this type of trauma define the people injured as polytraumatised patients. In addition, it is important to know the kinematics of the injuries and their specific characteristics, in order to implement quality medical-surgical care.Methods: scientific review of the literature to promote a comprehensive guide for the medical-surgical management of patients injured by bullfighting trauma.Results: We described the guidelines to standardise protocols for in-hospital approach of patients injured by bullfighting trauma.Conclusions: Bullfighting trauma is considered a real health problem in the emergency departments of the ibero-Americans countries, especially in Spain, where bullfighting is part of the national culture. The inherent characteristics of these animals cause injuries with special aspects, so it is important to know the generalities of bullfighting trauma. Because of the multidisciplinary approach, these guidelines are adressed to all healthcare providers involved in the management of these patients. It is essential to establish particular initial care for this type of injury, specific therapeutic action and follow-up based on the medical-surgical management of the trauma patient in order to reduce the associated morbidity and mortality.

Lower Incidence of Hepatocellular Carcinoma with Tenofovir Alafenamide in Chronic Hepatitis B: Evidence from a Large-Scale Cohort

Background & AimsThe newer tenofovir alafenamide (TAF) lacks extensive research regarding its impact on hepatocellular carcinoma (HCC). This study aims to evaluate and compare the effects of TAF, tenofovir disoproxil fumarate (TDF), and entecavir (ETV) on HCC incidence using nationwide claim data. MethodsA total of 75,816 treatment-naïve chronic hepatitis B patients were included and divided into TAF (n=25,680), TDF (n=26,954), and ETV (n=23,182) groups after exclusions. Propensity score matching (1:1:1) resulted in 17,537 patients per group, and HCC incidence rates were compared. ResultsBefore matching, the incidence of HCC was significantly lower in the TAF group compared to the TDF and ETV groups (11.47 vs. 15.04 and 14.24 per 1,000 person-years). The incidence rate ratio for TDF was 1.31 (1.19-1.44) and for ETV was 1.24 (1.12-1.37). Before matching, the TAF group had a significantly lower HCC compared to TDF and ETV in both cirrhotic and non-cirrhotic patients. After matching, the TAF group had a lower HCC incidence compared to TDF (12.38 vs. 15.39, incidence rate ratio 1.24, p<0.001) but not ETV (incidence rate ratio 1.08, p=0.219). In cirrhotic patients, TAF had lower HCC incidence than TDF and ETV (30.25 vs. 39.56 and 38.51). In non-cirrhotic patients, TAF had lower HCC incidence than TDF (incidence rate ratio 1.19, p=0.030) but not ETV (incidence rate ratio 0.85, p=0.066). Cox regression analysis showed TAF had a significantly lower HCC incidence compared to TDF (hazard ratio 1.335, p<0.001) and ETV (hazard ratio 1.162, p=0.011), after adjusting for age, gender, and cirrhosis status. ConclusionsThe TAF group consistently demonstrated a lower incidence of HCC compared to the TDF and ETV groups, especially in patients with cirrhosis. IMPACT and IMPLICATIONSThe scientific justification for this work lies in its potential to fill the knowledge gap regarding the comparative efficacy of Tenofovir Alafenamide (TAF), Tenofovir Disoproxil Fumarate (TDF), and Entecavir (ETV) in reducing the incidence of hepatocellular carcinoma (HCC) in chronic hepatitis B patients. The study's findings are particularly crucial for healthcare providers and policymakers, as they highlight the significantly lower incidence of HCC associated with TAF, especially in patients with cirrhosis. These results suggest that TAF could be a preferable antiviral therapy option to mitigate HCC risk, thus influencing clinical decision-making and healthcare guidelines. Practically, these findings can guide physicians in prescribing more effective treatments, assist researchers in designing further studies to explore the mechanisms behind TAF's effectiveness, and inform policymakers in crafting healthcare policies that optimize patient outcomes while considering potential limitations such as the observational nature of the study and residual confounding factors.

Staffing Shortages? Time to Consider a Virtual Assistant

We are experiencing declining reimbursements and rising costly overheads in American healthcare. The modern healthcare provider faces the challenge of balancing efficient healthcare with the overload of paperwork that is increasing burnout and motivating doctors to early retirement. Using virtual assistants as a staffing alternative addresses the needs of many medical practices, regardless of their size or location. This article explores the role of virtual assistants and their ability to revolutionize healthcare delivery and offers information on implementing a virtual assistant.

Assessing Contributing and Mediating Factors of Telemedicine on Healthcare Provider Burnout

Assessing Contributing and Mediating Factors of Telemedicine on Healthcare Provider Burnout

The Effectiveness of Recipe4Health: A Quasi-Experimental Evaluation

IntroductionFood as Medicine is increasingly recognized as an important strategy for addressing the related challenges of food insecurity and nutrition-related chronic conditions. Food as Medicine refers to integration of food-based nutrition interventions into healthcare to prevent and treat disease. However, there is limited evidence to understand the effectiveness of Food as Medicine. MethodsRecipe4Health, a comprehensive Food as Medicine program, was implemented in 4 Federally Qualified Health Centers in California for patients with food insecurity and/or nutrition-related chronic conditions. Patients were referred by a healthcare provider to a ‘Food Farmacy’ (16 weekly produce home deliveries) alone or in combination with a ‘Behavioral Pharmacy’ (16 weekly group visits). A quasi-experimental study with pre/post surveys (4 months) and propensity score matched controls for Electronic Health Record (EHR) outcomes over 12 months was conducted. Participants were 2,643 Recipe4Health patients and 2,643 controls identified from 1/2020 to 12/2022; data were analyzed from 2023-2024. ResultsThere was a significant increase in produce consumption from baseline to four months (0.41 servings/day [0.11, 0.72], p=0.007) in the Food Farmacy in combination with Behavioral Pharmacy. Compared to controls, there were improvements in non-HDL cholesterol for the Food Farmacy alone (-17.1 mg/dl[-26.9, -7.2], p<0.001) and in combination with Behavioral Pharmacy (-17 mg/dl [-28.3, -5.8], p=0.003) at 12 months. Compared to controls, HbA1c significantly decreased in the Food Farmacy alone at 12 months (-0.37%, 95% CI [-0.65, -0.08]; p=0.01), but not the Food Farmacy with Behavioral Pharmacy. ConclusionsRecipe4Health resulted in improvements in diet and multiple clinical health outcomes, such as non-HDL cholesterol and HbA1c.

Post-traumatic stress disorder and symptoms in paediatric cancer survivors and their family nucleus: systematic review, meta-analysis and meta-regression.

Various studies have highlighted the increased incidence and symptoms of depression and anxiety in paediatric cancer survivors (PCS). Yet no meta-analysis has focused on post-traumatic stress disorder (PTSD) or post-traumatic stress symptoms (PTSS) in PCS and their family nucleus. To evaluate the overall risk of PTSD and severity of PTSS in PCS and their family nucleus. Secondary objectives include identifying potential risk factors of PTSD and high PTSS. We systematically searched PubMed, Embase and PsycINFO for studies comparing the risk of PTSD and PTSS severity among PCS, their family nucleus and non-cancer controls. PRISMA reporting guidelines were followed. Random effects meta-analyses and meta-regressions were conducted. From 1089 records, we included 21 studies. PCS have an increased risk of PTSD (risk ratio 2.36, 95% CI 1.37-4.06) and decreased PTSS severity (standardised mean difference -0.29, 95% CI -0.50 to -0.08). Subgroup analyses of other categorical study-level characteristics revealed that female PCS who were older at diagnosis and data collection had a significantly higher risk of PTSD. Meta-regression were insignificant. Family nucleus did not show a significantly increased risk of PTSD (risk ratio 1.13, 95% CI 0.59-5.00) and PTSS severity (standardised mean difference 0.53, 95% CI -0.00 to 1.06). Systematically reviewing studies on the family nucleus found that the majority reported a significantly increased risk of psychological trauma compared with the comparator. Lower education, income and social status were also risk factors. Timely identification and interventions are imperative for policy makers and healthcare providers to prevent trauma from worsening in this population group.

Electronic health records and data exchange in the WHO European region: A subregional analysis of achievements, challenges, and prospects

Electronic health record (EHR) systems are powerful tools that enhance healthcare quality. They improve efficiency, enable data exchange, and ensure authorized access to patient information. In 2022, the World Health Organization Regional Office for Europe (WHO EURO) conducted a survey to assess the digital health capabilities of the 53 Member States. This article provides a sub-regional analysis of the status of EHR systems and major barriers to their implementation, their readiness for information sharing, and the access and re-use of EHR data.Generally, EHR implementation and national data exchange are at an advanced stage in the region, though achievements and challenges vary across subregions. While more Member States in the Eastern, Western, and Southern Europe subregions reported having centralized national EHR systems, the situation is more diverse in Northern Europe and the Asian subregions, where both centralized and decentralized EHR systems are in use. Significant barriers to EHR implementation, including funding, technical capacity, competing priorities, and lack of interoperability standards are frequently cited, while others like demand, knowledge or acceptance challenges are not reported as significant. Significant barriers were reported the most by the Central Asia subregion, while barriers had least significance in Western Europe. Five out of the six subregions reported a wide adoption of national strategies and have dedicated agencies to ensure interoperability and secure data exchange. However, only 29 Member States have established legal requirements for healthcare providers to adopt EHR systems that conform to national standards for both clinical terminology and electronic messaging, with this being most notable in Western, Eastern, and Northern Europe, and the lowest percentage of Member States in Central Asia. All Member States of the six sub regions have passed privacy and data protection legislation. The use of EHR data is widely regulated, with only five remaining Member States of WHO Europe to develop EHR legislation distributed across subregions (Southern Europe, Western and Central Asia).Looking ahead, Member States are encouraged to define national legislation governing EHR systems and their use, while ensuring the interconnectivity of the local and regional EHR systems. Sustainable funding should be allocated to the development and maintenance of these systems. Efforts should also focus on creating comprehensive roadmaps for the full implementation of health data standards, addressing interoperability at local and regional levels, and developing quality management systems for testing and certification. Additionally, monitoring and evaluation should be conducted to assess whether EHRs are contributing to national health objectives. Finally, engaging patients and intersectoral partners will be key to developing a more patient-centered approach, ensuring that EHR systems meet patient needs and expectations.

Understanding the impact of delayed diagnosis and misdiagnosis of systemic lupus erythematosus (SLE)

ABSTRACT Systemic lupus erythematosus (SLE) is a complex and multifaceted autoimmune disease that poses a significant diagnostic challenge for healthcare providers due to its diverse clinical manifestations, lack of specific testing, and potential to mimic other conditions. Delayed diagnosis and misdiagnosis of SLE can have serious consequences for patients, impacting their physical and psychological well-being. The physical consequences of delayed diagnosis and misdiagnosis of SLE are significant. Studies have shown that delays in diagnosis can lead to increased organ damage, poorer health outcomes, and increased morbidity and mortality. With a delayed diagnosis or misdiagnosis, patients may also experience increased psychological symptoms, such as depression, anxiety, and lack of trust in clinicians. The median delay from the first symptom to diagnosis in SLE is 47 months, highlighting the need for early recognition and management. Delayed diagnosis can lead to increased disease progression, which can result in irreversible organ damage and long-term complications. This paper investigates the multifaceted consequences of delayed diagnosis and misdiagnosis of SLE, encompassing both physical and psychological impacts. It delves into the underlying reasons behind diagnostic delays and offers comprehensive strategies for healthcare providers to enhance early recognition and management. Through a thorough analysis of medical literature and statistical data, this paper aims to provide physicians with actionable insights to improve diagnostic accuracy and patient outcomes in SLE.

Normal Value of Perfusion Index in Healthy Neonates Born in Iran.

Perfusion index is a dependable indicator for assessing the perfusion status of newborns. A low perfusion index indicates compromised hemodynamic function. The study aims to investigate perfusion index in asymptomatic newborns aged 35 to 41 weeks who did not require medical support. Healthy neonates born in four major maternity hospitals of Tehran University from 2019 to 2021 were selected. To ensure consistency and reliability in data collection, a detailed manual was developed and distributed, along with comprehensive training sessions for all personnel involved. A total of 994 newborns entered the study. Among them, echocardiography was adversely affected in 218 neonates due to abnormal screening pulse oximetry. Of these 218 neonates, 53 were found to have abnormal echocardiography results. The median perfusion index value in healthy neonates was 1.6%, and the median oxygen saturation was 97%. A percentile perfusion index curve was developed for healthy neonates to establish a normal reference range. Developing a percentile perfusion index curve specific to healthy neonates provides a useful reference range for healthcare providers to assess perfusion status in this population, but further research is needed to confirm its accuracy.

Investigating the role of PmrB mutation on Colistin antibiotics drug resistance in Klebsiella Pneumoniae

Klebsiella pneumoniae, a member of the Enterobacteriaceae family, naturally resides in the digestive tracts of both healthy animals and humans. Carbapenem-resistant Klebsiella pneumoniae (CRKP) poses a significant health risk for hospitalized patients worldwide, greatly reducing the effectiveness of commonly used antibiotics. This leaves healthcare providers with limited treatment options, often relying on colistin. PmrB is important for the survival of Klebsiella pneumonia and, a mutation in the PmrB protein is accountable for the development of colistin antibiotic resistance in Klebsiella pneumonia. This is especially important because colistin is a fundamental component in the treatment of pneumonia. Three mutated residues—T157P, G207D, and T246A—are responsible for colistin resistance. The structural alterations and underlying mechanisms in the PmrB protein that cause resistance owing to mutation remain unclear. As a result, this study is focused to the exploration of the putative mechanism of resistance resulting from these mutations, as well as the structure modification of normal and mutant PmrB proteins, using molecular docking and molecular dynamics simulations analysis. Our results demonstrated that the interaction paradigm for the mutants has been altered and thus showing a significant effect upon the hydrogen bonding network. Interestingly, the binding of Colistin with the three mutant demonstrate unstable behavior as compared with WT+Colistin. The proposed drug-resistance mechanism will help to guide the development of PmrB drugs. These finding may give a new framework for developing novel drugs against the mutant version of PmrB.

The evolution of diabetes healthcare providers

Healthcare providers provide technical support for insulin pump therapy. In practice, they often provide much more than just logistical support. The complexity of day-to-day diabetes management, and the innovative systems that have emerged in recent years, make the provider a key partner. The changing needs of both patients and pump-initiating centers call for a transformation of their role.

Scoping review of enablers and challenges of implementing pharmacogenomics testing in the primary care settings.

Pharmacogenomic testing (PGx) plays a crucial role in improving patient medication safety, yet ethical concerns and limitations impede its clinical implementation in the primary care settings. To systematically review the current state of PGx in the primary care settings and determine the enablers and challenges of its implementation. A scoping review was carried out by adhering to Arksey and O'Malley's 6-stage methodological framework and the 2020 Joanna Briggs Institute and Levac et al. DATA SOURCES: Cochrane Library, EMBASE, Global Health, MEDLINE and PubMed were searched up to 17 July 2023. All peer-reviewed studies in English, reporting the enablers and the challenges of implementing PGx in the primary care settings were included. Two independent reviewers extracted the data. Information was synthesised based on the reported enablers and the challenges of implementing PGx testing in the primary care settings. Information was then presented to stakeholders for their inputs. 78 studies discussing the implementation of PGx testing are included, of which 57% were published between 2019 and 2023. 68% of the studies discussed PGx testing in the primary care setting as a disease-specific themes. Healthcare professionals were the major stakeholders, with primary care physicians (55%) being the most represented. Enablers encompassed various advantages such as diagnostic and therapeutic benefits, cost reduction and the empowerment of healthcare professionals. Challenges included the absence of sufficient scientific evidence, insufficient training for healthcare professionals, ethical and legal aspects of PGx data, low patient awareness and acceptance and the high costs linked to PGx testing. PGx testing integration in primary care requires increased consumer awareness, comprehensive healthcare provider training on legal and ethical aspects and global feasibility studies to better understand its implementation challenges. Managing high costs entails streamlining processes, advocating for reimbursement policies and investing in research on innovation and affordability research to improve life expectancy.

Caring for the child with a tracheostomy through the eyes of their caregiver: A photovoice study

PurposeThis qualitative descriptive study aimed to explore the daily experiences of caregivers of children with medical complexity with a tracheostomy at home. MethodsThis study used photovoice, a participatory action research methodology. Adult English-speaking caregivers of children with a tracheostomy, living in Texas, with access to a smartphone were recruited. Photographs taken by participants and an interview guide were used to guide semi-structured interviews with caregivers. ResultsEight participants were recruited. After analyzing photographs and caregiver interviews, four main themes were identified: role transition, daily challenges, finding support, and thriving in the new normal. ConclusionsCaregivers take on multiple roles, including providing medical care, advocating for their children, and educating others. While facing emotional challenges such as guilt, fear, and exhaustion, caregivers rely on external support systems, emphasizing the need for nurses and healthcare providers to provide comprehensive support and improve the accessibility of home nursing services. Practice implicationsThe findings of this study can inform nurse-led interventions and advocacy efforts aimed at supporting marginalized children with medical complexity with a tracheostomy and their families. These efforts may include enhancing communication and collaboration between families, healthcare workers, and the public, providing comprehensive, proactive support for caregivers, and improving access to home nursing services.