Health Counseling Research Articles

“Warning: ultra-processed”: an online experiment examining the impact of ultra-processed warning labels on consumers’ product perceptions and behavioral intentions

BackgroundNutrient content and degree of processing are complementary but distinct concepts, and a growing body of evidence shows that ultra-processed foods (UPFs) can have detrimental health effects independently from nutrient content. 10 + countries currently mandate front-of-package labels (FOPL) to inform consumers when products are high in added sugars, saturated fat, and/or sodium. Public health advocates have been calling for the addition of ultra-processed warning labels to these FOPLs, but the extent to which consumers would understand and be influenced by such labels remains unknown. We examined whether the addition of ultra-processed warning labels to existing nutrient warning labels could influence consumers’ product perceptions and purchase intentions.MethodsIn 2023, a sample of adults in Brazil (n = 1,004) answered an open-ended question about the meaning of the term “ultra-processed,” followed by an online experiment where they saw four ultra-processed products carrying warning labels. Participants were randomly assigned to view either only nutrient warning labels or nutrient plus ultra-processed warning labels. Participants then answered questions about their intentions to purchase the products, product perceptions, and perceived label effectiveness.ResultsMost participants (69%) exhibited a moderate understanding of the term “ultra-processed” prior to the experiment. The addition of an ultra-processed warning label led to a higher share of participants who correctly identified the products as UPFs compared to nutrient warning labels alone (Cohen’s d = 0.16, p = 0.02). However, the addition of the ultra-processed warning label did not significantly influence purchase intentions, product healthfulness perceptions, or perceived label effectiveness compared to nutrient warning labels alone (all p > 0.05). In exploratory analyses, demographic characteristics and prior understanding of the concept of UPF did not moderate the effect of ultra-processed warning labels.ConclusionsUltra-processed warning labels may help consumers better identify UPFs, although they do not seem to influence behavioral intentions and product perceptions beyond the influence already exerted by nutrient warning labels. Future research should examine how ultra-processed warning labels would work for products that do and do not require nutrient warnings, as well as examine the benefits of labeling approaches that signal the health effects of UPFs.Trial registrationClinicalTrials.gov, NCT05842460. Prospectively registered March 15th, 2023.

Challenges in diagnosis and treatment of cystinuria patients with Urolithiasis: multicenter patient centered study.

Cystinuria represents a rare cause of urolithiasis, accounting for 1% of all cases. However, it poses unique challenges in diagnosis and management. This study aimed to examine the challenges of managing cystine stones from the perspective of cystinuria patients. Following ethical approval, we reviewed the medical records of cystine stone patients treated at four tertiary centers from 2016 to 2021 and surveyed them on their perceptions of cystinuria. It included questions about demographic characteristics, herbal treatments, pain management, online engagement, disease outcomes, and cystinuria-related fears. The study included 28 adults with cystinuria nephrolithiasis, with a mean age of 30.5 years. Of these, 78.6% had consanguineous parents, and the first stone episode occurred at a mean of 14.82 years age. Family history of Cystinuria was encountered in 82.1%. Cystinuria was diagnosed after a mean of 6.43 years from the first stone episode, and stone analysis was performed in 22/28 after a mean of 3.86 years from the first stone episode. Only 17 patients (60.8%) underwent metabolic evaluation for kidney stones. Regarding non-surgical treatments, 13 (46.5%) patients received alkalinization medication, and only 10 (35.7%) were prescribed chelating agent therapy. Additionally, 50% of patients took herbal remedies. The diagnosis of cystinuria is often delayed, leading to a delay in receiving medical treatment (alkalinization and chelating agents) and poor health education and counseling. Thus, referring cystinuria patients to tertiary hospitals and providing a multidisciplinary approach might decrease the morbidity of the disease and enhance their well-being.

Public responses and parasocial relationships following senator John Fetterman's depression disclosure.

Research has found that when a public figure discloses an illness, it can motivate members of the public to reconsider their own health behaviors, particularly when they have a parasocial relationship with the public figure. When the public figure is a politician, it is possible that partisan differences may also influence emotional, attentional, and behavioral responses to health news. We empirically examined public responses to Democrat John Fetterman's disclosure of his treatment for depression shortly after he was inducted into the United States Senate as the junior senator from Pennsylvania in 2023. Using a survey of adult Pennsylvania residents who identified as eligible voters in April 2023, we found that 204 respondents were aware of the news of Fetterman's diagnosis of and treatment for depression. Our data revealed that differences in demographics and parasocial relationships-both positive and negative-with Fetterman predicted different patterns of emotional responses to the news. In addition, age, anger, a negative parasocial relationship, and a positive parasocial relationship were associated with additional outcomes, including attention to news about the disclosure and depression-related information seeking. Mental health advocates could use politicians' depression disclosures to provide information at a time when people are paying more attention to the condition; however, they may need to find other public figures to counteract negative responses to partisan officials. Policymakers could also consider funding mental health campaigns, which could be launched alongside public figure disclosures.

Stress and depression among male police officers in Taiwan: Severity, determinants, and coping strategies.

Police work, known for its high stress, exhibits elevated depression rates. This study explores stress and depression in male officers, examining personality traits, coping strategies, family, and social support. Aligned with the diathesis-stress hypothesis and job demands-resources model, it aims to illuminate these factors in policing. Two hundred and sixty-four male police officers from Yunlin, Taiwan were enrolled in this study. Structured measurements of stress level, depression symptoms, personality traits, family functioning, and social support were made. We used multiple regression analysis to assess predictors of stress level and depression and identified coping strategies used by the police officers. Of the 264 male police officers, 36.4% had clinically significant depression. Occupational stress was mostly related to organizational factors. Multivariate regression analyses showed that age, personality traits, officer's rank, and period of education obtained could predict police officers' occupational stress. Personality traits, social support, occupational stress, and period of education obtained could predict depression. The most frequently used coping strategies were drinking and smoking. The results of our study support the diathesis-stress hypothesis and the job demands-resources model. Enhancing male police officers' mental well-being requires addressing key factors like social support and occupational stress. Strategic measures, such as mental health education, destigmatization, counseling, and community-building, are vital. Policymakers should collaborate with mental health professionals for tailored interventions, fostering a healthier work environment.

Self-reported Health Service Utilization and Barriers to Care Among US Adults with a History of Post COVID-19 Condition.

Millions of US adults continue to experience symptoms of post COVID-19 condition (PCC). More data on health service utilization patterns and barriers to care in this population are needed to understand how to care for people with PCC. To evaluate health service utilization and barriers to medical care among individuals with a history of PCC compared with other US adults. Data were analyzed from the 2022 National Health Interview Survey (NHIS), a nationally representative, cross-sectional survey of the US population. US adults. Health service utilization and the presence of financial and nonfinancial barriers to care in the preceding 12 months. There were 24,905 individuals included in the analysis, representing approximately 230 million US adults. The weighted prevalence of those with a history of PCC was 6.9% (95%CI, 6.5-7.3). Compared to other US adults, participants with a history of PCC were more likely to have had an urgent care visit (adjusted odds ratio (aOR) 1.52 [95%CI, 1.34-1.72]), emergency room visit (aOR 1.94 [95%CI 1.71-2.21]), hospitalization (aOR 1.48 [95%CI, 1.24-1.77]), rehabilitation services (aOR 1.35 [95%CI, 1.14-1.60]), home care (aOR 1.55 [95%CI, 1.66-2.26]), mental health counseling (aOR 1.39 [95%CI, 1.17-1.65]), and complementary and integrative medicine services (aOR 1.29 [95%CI, 1.13-1.49]). Furthermore, respondents with a history of PCC were more likely to report at least one financial barrier to care (aOR 1.71 [95%CI, 1.48-1.97]) and at least one nonfinancial barrier (aOR 1.77 [95%CI, 1.56-2.00]). A greater proportion of participants with a history of PCC reported a financial barrier and nonfinancial barrier than adults with most other chronic conditions captured by NHIS. Individuals with a history of PCC were more likely to use a variety of health services and report barriers to medical care. Health systems should consider developing accessible, multidisciplinary care pathways for this population.

Paul Farmer: A Pioneer of Global Health, Health Equity, and Health Advocacy.

Paul Farmer, a distinguished physician and anthropologist known by many as a pioneer in global health endeavors, made a profound impact on the landscape of healthcare. Through his innovative approaches to healthcare delivery and his unwavering commitment to social justice and health equity, he changed the landscape of healthcare on a global scale. He was a Kolokotrones University Professor, Chair of the Department of Global Health and Social Medicine at Harvard Medical School, Chief of the Division of Global Health Equity at Brigham and Women's Hospital in Boston, Chancellor of the University of Global Health Equity in Rwanda, and Chief Strategist and Co-founder of Partners In Health (PIH). PIH is an international non-profit organization that embarked on research and healthcare advocacy initiatives, providing direct healthcare services for those in resource-limited communities worldwide. Farmer, through his development of innovative and heartfelt approaches to healthcare delivery and social justice medicine, exemplified how integrating community engagement and social determinants of health can lead to transformative healthcare solutions and ultimately improve patient experiences. This vignette explores Farmer's early life, educational journey, and major contributions to medicine and social justice in healthcare, emphasizing the enduring impact of his work on public health and future generations of medical professionals.

The Factors Affecting Substance Use and the Most Effective Mental Health Interventions in Adolescents and Young Adults

Adolescents and young adults are particularly susceptible to substance abuse. They have yet to solidify their sense of self to the degree necessary to effectively resist temptations from negative peer pressure. It is vital for mental health counselors to understand the factors affecting substance abuse in adolescents/young adults and to comprehend the effectiveness of common intervention strategies fully. This paper produces a narrative literature review of 27 international journal publications from 2004 through June 2024 related to causal factors and interventions effective for treating substance abuse in adolescents and young adults. The results indicate that adolescents who idolize antisocial peers and lack a strong sense of self, family attachment, parental monitoring, and role models are more likely to suffer from substance abuse. Successful interventions include those that help strengthen the adolescent’s sense of self, a mental-health-friendly school environment staffed with professional mental health counselors, and interactive programs that engage students in positive behaviors. Positive family and peer role models can also assist in helping adolescents/young adults build a strong self-image and resist substance use. Positive peer influence is another critical factor, but more work must be undertaken to fully assess its effectiveness as an intervention.

Beyond the symptoms: Team‐based learning for social determinants in emergency medicine training

AbstractBackgroundEmergency departments serve as the front line for individuals facing acute health needs, often compounded by social determinants of health (SDoH). Integrating SDoH into emergency medicine care is vital for promptly addressing health concerns and averting future crises. This curriculum adopts a team‐based approach to train emergency medicine residents in identifying and addressing SDoH, thereby delivering comprehensive and equitable care.MethodsThe curriculum employs various educational strategies, including presession readings, SDoH introductions, case simulations, debriefing sessions, panel discussions, and collaboration with other health care professionals. Evaluation via pre‐ and postcurriculum surveys revealed substantial enhancements in residents' comprehension, identification, and familiarity with local resources related to SDoH.ResultsFindings indicated an uptick in residents' grasp and acknowledgment of SDoH, alongside their capacity to address these factors. Posttraining Likert scores exhibited notable improvements across all domains, underscoring an augmented ability to manage SDoH in clinical practice. This curriculum amplifies residents' capability to deliver patient‐centric care and advocate for health equity.ConclusionsContinuous refinement and assessment are paramount for ensuring residents' readiness to navigate the intricate social determinants affecting patients' well‐being. Ultimately, this curriculum heralds a pivotal stride toward fostering health equity and refining patient care standards within emergency medicine.

The Hypocritical Oath? Unintended Consequences of Prenatal Substance Use Policies and Considerations for Health Care Providers.

Prenatal substance use (PSU) is a serious perinatal health issue in the United States with consequential health effects. To address this issue and protect children from the detrimental effects of substance exposure during pregnancy, the US government amended the Child Abuse Prevention and Treatment Act to provide funding to states with protocol to notify child protective services of PSU cases and develop treatment plans for affected families. Although well-intentioned, this statute resulted in diverse inter- and intrastate interpretations and implementation of PSU regulations nationwide, ultimately leading to mass confusion about who the policy applies to and when it should be applied. PSU policies are largely punitive in nature, which has led to null or adverse effects on perinatal outcomes. Treatment-prioritizing policies present hope for supporting birthing parents who use substances; however, their potential benefits are obstructed by fear and confusion instilled by coexisting punitive policies, stigma of disclosing substance use during pregnancy, variable or lack of screening methods, and insufficient knowledge about PSU health risks and counseling methods. Precis: Punitive prenatal substance use policies may result in adverse perinatal outcomes. Treatment-oriented protocols and legislation should be prioritized.

Teleworking and Psychological Well-being:Insights and Applications for TVETInstitutions

The shift to teleworking has reshaped the work environment, introducing new dynamics and challenges. This transition is particularly relevant in the context of Technical and Vocational Education and Training (TVET), where preparing students for the evolving job market is essential.This study addresses the limited scientific analysis of how teleworking affects psychological well-being. Understanding these impacts is crucial for TVET institutions to equip students with the skills needed to thrive in remote working environments.The objectives are to identify the determinants of psychological well-being related to teleworking, analyze their impact, and propose a conceptual model linking these determinants to well-being. This study aims to fill the gap in existing research by providing concrete evidence and insights.The methodology involves a quantitative approach,using a survey questionnaire administered to 107 participants from a selected area. Data collection focuses on various factors influencing psychological well-being, and the analysis employs statistical methods to identify significant determinants and their relationships.The findings reveal key determinants of psychological well-being in teleworking, such as resilience, time management, and technology proficiency. These determinants are synthesized into a conceptual model that highlights their impacts and interconnections.The study's significance extends toTVET institutions by enhancing support services, providing mental health resources and counseling, establishing mentorship programs, and fostering partnerships with employers. These initiatives aim to better prepare students for teleworking, contributing to a healthier, more resilient workforce.

New image, same tactics: global tobacco and vaping industry strategies to promote youth vaping.

E-cigarette use (or vaping) is widespread in young people and is a rapidly growing public health problem. While the tobacco and vaping industry has promoted vaping as a smoking cessation aid for adults, the industry has strategically targeted young people through marketing and appealing designs to orientate a new generation of consumers to use their products. These strategies are not new and replicate what we have previously seen employed by the tobacco industry in past decades to maintain and grow their tobacco profits. We review the evidence on tobacco and vaping industry interference, highlighting the calculated and strategic use of interference tactics as a discourse to curb tobacco control efforts. We demonstrate how these tried and tested strategies are now being purposefully re-used in the context of vaping. As Australia is currently undergoing significant policy reforms for the access and retail of vaping products, we also provide a case study of the industry response played out in this contemporary landscape. Government and public health advocates are in a key position to be one step ahead in proactively tackling the vaping crisis. We recommend that continued monitoring of industry activities and strategies, achieving political transparency and tightening loopholes in current regulations are all needed to identify and eliminate the tobacco and vaping industry's influence on policymaking. Given their previous track record, we emphasize the need to counter industry interference tactics with urgency to prevent a new generation of nicotine dependence and to support and protect future action in tobacco control.

Prostate cancer survivorship of Australian men living with prostate cancer: Patient support programs in Australia.

Treatment for prostate cancer (PC) is associated with adverse effects, especially in patients receiving androgen deprivation therapy (ADT). The Australian Government, non-governmental organisations and pharmaceutical companies responsible for marketing ADT have initiated and sponsored various strategic support programs for patients diagnosed with PC. This professional article provides an overview of available PC patient support programs in Australia to assist general practitioners (GPs) to direct patient referrals and optimise clinical care. These PC support programs provide useful assistance on educational materials, decision support, clinical care management and referral to specialised services (eg continence advice, sexual health counselling and psychological support). More concerted efforts and smarter investment in PC survivorship programs are necessary to engage, educate and improve the lives of men living with PC more effectively.

Further assessment of structural and social determinant of health effects on breast cancer care timelines: A qualitative study.

121 Background: Time to treatment (TTI) delays result in increased morbidity and mortality for cancer patients. These treatment delays disproportionately occur within marginalized communities due to structural challenges with social determinants of health (SDoH), disengagement with the healthcare system and limited or low health literacy that impacts their ability to obtain timely, appropriate care. We conducted semi-structured interviews with patients treated for breast cancer about their care treatment trajectories to further understand barriers and facilitators for timely treatment from the patient perspective. Methods: We conducted semi-structured interviews with 30 patients in 2023 who received curative intent breast cancer treatment at Montefiore Medical Center from 2019 to 2023. Interviews addressed barriers and facilitators of timely TTI, perceived timeliness and salience of timeliness, emotional well-being, and perceptions of the healthcare team and communication. We analyzed interviews using framework analysis. Results: A total of 30 patients were interviewed (mean age 58.9 year ± 10.6, 75% Non-Hispanic Black, 25% Non-Hispanic White). The median TTI was 52.5 days (49, 62 IQR). First treatment modality included surgery (75%) and chemotherapy (25%). Many participants found significant emotional and logistical support through family, social networks, religion, and connecting with survivors. Several patients faced transportation issues hindered their ability to adhere to schedules, childcare challenges, and difficulty managing numerous appointments, with some wishing transportation services had been offered at diagnosis. Some participants experienced unique cancer presentation, required clearances, involvement of non-oncologic providers and consultants, and time for decision-making about treatment options that may have contributed to delays. Some patients faced financial burdens including personal expenses, family support needs, and difficulties accessing third-party assistance (i.e., short-term disability, Supplemental Security Income). Some patients valued mental health counseling and other resources like group therapy and social workers, though some wished for earlier, more specialized support, indicating gaps in the support timeline. A few patients expressed preference for longer TTI that afforded them time to make important decisions and seek opinions. Conclusions: The study revealed that many patients faced logistical, emotional, and informational challenges while awaiting treatment and highlighted a need for more tailored assistance and timely interventions. Findings from our work highlight the need for further study on how healthcare systems can better equip and engage patients early in the care timeline to avoid delayed TTI.

Peningkatan Pola Asuh Melalui Penyuluhan Gizi dan Kesehatan di Kelurahan Samaan, Kota Malang

Nutrition and health counseling in Samaan Village, Malang City, aims to increase parents' understanding of the importance of proper parenting in supporting child development, especially in the context of stunting prevention. Through a Participatory Action Research (PAR) approach, this activity involved posyandu cadres and the PKK mobilizing team in designing and implementing counseling. The materials presented focused on balanced nutrition, psychological stimulation, and the importance of routine health checks for toddlers. The results of the counseling showed an increase in parents' understanding of the importance of nutrition in supporting children's physical and cognitive development, as well as the application of better parenting.

GREEN DENTISTRY: A SUSTAINABLE FUTURE FOR ORAL HEALTH CARE

The dental public health profession, like many others, is becoming increasingly aware of its environmental impact and the urgent need to adopt more sustainable practices. Green dentistry, also known as eco-friendly dentistry, is a growing movement that focuses on reducing waste, conserving energy, and minimizing pollution while maintaining high standards of patient care. By integrating environmentally conscious choices into daily practices—such as using digital technologies, reducing water consumption, and choosing biodegradable or recyclable materials—dentists can significantly contribute to environmental preservation without compromising the quality of their services. One of the core tenets of green dentistry is the shift towards digital dentistry. Traditional methods of record-keeping and patient management involve a considerable amount of paper and plastic waste. By adopting digital x-rays, patient records, and appointment scheduling systems, dental practices can dramatically reduce their paper use, lower radiation exposure, and decrease the need for disposable materials. Additionally, using energy-efficient equipment and eco-friendly sterilization techniques can help reduce the carbon footprint of dental offices, aligning with global sustainability goals. As the dental community moves towards greener practices, there is an opportunity for education and advocacy in dental public health. Dental schools and professional organizations play a crucial role in promoting awareness of sustainable practices among both practitioners and patients. By fostering a culture of environmental responsibility within the field, we not only contribute to a healthier planet but also inspire the next generation of dentists to prioritize sustainability in their professional lives. Green dentistry represents a vital step towards a more sustainable future for both the profession and the world at large.

Analysis of Educational Needs of Home Care Nurses: Utilizing Borich’s Needs Assessment and the Locus for Focus Model

Purpose: This study analyzed educational needs of home care nurses to improve the quality of home care service and identify priority educational subjects. Methods: This study analyzed the training priorities of 54 home care nurses working at community service centers or public health centers in Seoul, Korea, using the Borich Needs Assessment and the Locus of Focus model. The home care nurses’ tasks were categorized into 21 tasks and 85 task elements. Results: Six priority educational subjects were identified: 1) health assessment and monitoring, 2) nursing records and information management, 3) health education and counseling techniques, 4) home care supplies management, 5) recipient identification and communication skills, and 6) care recipient classification and management. Activities related to one-on-one health management, such as health screening, measurements, and disease management counseling, were found to be high priorities. In contrast, small group program planning and operation were rated as a low priority. Conclusion: This study underscores the importance of incorporating identified educational needs into training curricula for home care nurses. Regular assessment and integration of these needs into educational programs are crucial for enhancing nursing competence and service quality.

Understanding the impact of expertise on compassion fatigue in counseling via core self-evaluation and resilience.

Compassion fatigue is a prevalent challenge experienced by helping professionals, influencing both their personal well-being and the quality of services they deliver. While the beneficial impact of expertise in counseling on alleviating compassion fatigue has been established, limited research has investigated this association specifically among mental health counselors within the cultural context of China. Additionally, the underlying mechanisms remain unclear. This study examined whether expertise in counseling can reduce compassion fatigue and whether this relationship is mediated by core self-evaluation and resilience. A cross-sectional survey of 109 mental health counselors revealed that expertise negatively predicted compassion fatigue both directly and indirectly through enhanced core self-evaluation. However, resilience only exhibited a negative correlation with compassion fatigue and a positive correlation with core self-evaluation, its mediating effect between expertise and compassion fatigue was not supported. This study highlights the crucial role of expertise and core self-evaluation as mediating factors in alleviating compassion fatigue.

Effects of a muscle relaxation exercise programme on test anxiety and sleep quality among fourth‐year nursing students before comprehensive examination in Palestine

AbstractIntroductionThere is a lack of research on the effect of progressive muscle relaxation (PMR) on minimising test anxiety and enhancing sleep quality among nursing students in Arab countries, including Palestine. Therefore, this study aimed to investigate the effects of a PMR intervention programme on test anxiety and sleep quality in fourth‐year nursing students before the comprehensive examination in Palestine.MethodsA one‐group pre‐/postdesign was conducted on a group of fourth‐year nursing students before the comprehensive examination (N = 60) at Arab American University in Palestine. The PMR programme consisted of five sessions lasting 45 min over the course of 1 week and was implemented from the beginning of January to the end of January 2024.ResultsFindings indicated a significant difference in test anxiety pre‐ and post‐PMR exercise (t[59] = 19.3, p < .01). Also, a significant difference was found in sleep quality before and after the PMR exercise (t[59] = 15.4, p < .01). Additionally, no difference was found in test anxiety and sleep based on age and gender pre‐/post‐PMR intervention programme.ConclusionThis study proposes that PMR effectively reduces test anxiety and improves sleep quality among nursing students. Therefore, the PMR programme should be incorporated as a therapeutic intervention for nursing students and students in general and particularly those suffering from test anxiety and poor sleep quality. Also, mental health counsellors and instructors can use such interventions in their therapeutic management as non‐pharmacological therapy.

Conceptualization and teaching health advocacy in undergraduate medical education:a document analysis.

Health advocacy is considered to be a core competence for physicians, but it remains unclear how the health advocacy role, despite being described in overarching competency frameworks, is operationalized in undergraduate medical education (UME). This study aimed to identify how health advocacy is conceptualized and taught in undergraduate medical curricula. We performed a qualitative analysis of curriculum documents from all eight medical schools in the Netherlands, all of which offered competency-based UME. Thematic analysis was used to code all the documents and generate themes on health advocacy conceptualization and teaching. To categorize the emerging themes, we used the framework of Van Melle et al. for evaluating the implementation of competency-based medical educational programs. Health advocacy was mostly conceptualized in mission statements about social responsibility of future physicians, related to prevention and promoting health. We found key concepts of health advocacy to be taught mainly in public health and social medicine courses in the bachelor stage and in community-based clerkships in the master stage. Specific knowledge, skills and attitudes related to health advocacy were taught mostly in distinct longitudinal learning pathways in three curricula. Health advocacy is conceptualized mostly as related to social responsibility for future physicians. Its teaching is mostly embedded in public health and social medicine courses and community-based settings. A wider implementation is warranted, extending its teaching to the full width of medical teaching, with longitudinal learning pathways providing a promising route for more integrative health advocacy teaching.

"You Can't Let Go" - A Black Community Leader's Perspective on Engagement and Advocacy.

Lanre Tunji-Ajayi is president and CEO of the Sickle Cell Awareness Group of Ontario (SCAGO). This charitable organization focuses on ameliorating the lives of those living with sickle cell disease by providing evidence-based support to patients and supporting clinical and psychosocial research, health promotion and the development of best practice guidelines. Lanre's passion for this work is personal. Following the death of her brother Sunday Afolabi from preventable and treatable complications of sickle cell disease, Lanre immersed herself in advocacy for community health and quality patient care. In this oral history narrative, Lanre reflects on her decades-long journey advocating for those living with sickle cell disease - a disease which disproportionately affects Black people. Her reflections focus acutely on the challenges she has faced in raising awareness and visibility, including through formal public engagement policy processes. Lanre also speaks to the personal costs she has encountered engaging in this advocacy work and the subtle and institutionalized forms of anti-Black racism that have punctuated this already difficult effort to bring about change.