Dental patients as partners in promoting quality and safety: a qualitative exploratory study.

OBJECTIVE: Active patient involvement in promoting quality and safety is a priority for healthcare. We investigated how dental patients perceive their role as partners in promoting quality and safety across various dental care settings. METHODS: Focus group sessions were conducted at three dental practice settings: an academic dental center, a community dental clinic, and a large group private practice, from October 2018-July 2019. Patients were recruited through flyers or word-of-mouth invitations. Each session lasted 2.5 h and patients completed a demographic and informational survey at the beginning. Audio recordings were transcribed, and a hybrid thematic analysis was performed by two independent reviewers using Dedoose. RESULTS: Forty-seven participants took part in eight focus group sessions; 70.2% were females and 38.3% were aged 45-64 years. Results were organized into three major themes: patients' overall perception of dental quality and safety; patients' reaction to an adverse dental event; and patients' role in promoting quality and safety. Dental patients were willing to participate in promoting quality and safety by careful provider selection, shared decision-making, self-advocacy, and providing post-treatment provider evaluations. Their reactions towards adverse dental events varied based on the type of dental practice setting. Some factors that influenced a patient's overall perception of dental quality and safety included provider credentials, communication skills, cleanliness, and durability of dental treatment. CONCLUSION: The type of dental practice setting affected patients' desire to work as partners in promoting dental quality and safety. Although patients acknowledged having an important role to play in their care, their willingness to participate depended on their relationship with their provider and their perception of provider receptivity to patient feedback.

A social-ecological examination of sleep among Airmen in technical training.

Inadequate sleep is an on-going risk to the health and mission readiness of U.S. Armed Forces, with estimates of sleep problems high above U.S. civilian populations. Intervening early in the career of active duty Air Force personnel (or "Airmen") with education and the establishment of healthy behaviors may prevent short and long term-detriments of sleep problems. This paper describes the results of a qualitative study seeking to understand the facilitators and barriers to achieving good sleep in a technical training school during the first year of entry into the United States Air Force. Using the social ecological framework and content analysis, three focus groups with Airmen were conducted to explore themes at the individual, social, environmental, and organizational/policy level. Overall, results indicated a cohort motivated to achieve good sleep, and also struggling with a number of barriers across each level. This paper highlights opportunities for population health interventions during technical training aimed at supporting Airmen in developing healthy sleep behaviors early in the course of their career.

Immigrant Mothers' Perspectives on Pediatric Primary Care: Challenges and Solutions to Improve Medical Home Use.

Children in immigrant families (CIF) constitute 25% of all children in the United States. Known barriers to accessing and navigating the health care system for immigrants (i.e., poverty, fear, limited English proficiency, lack of insurance) lead to decreased medical home establishment among CIF, although the ways in which these obstacles affect medical home access are less studied. With a focus on Congolese, Afghan, Syrian/Iraqi, and Central American immigrants, key informant interviews and focus groups were conducted to identify mothers' perceptions of and experiences with pediatric primary health care. Five common themes emerged: mothers' critical role in children's health, uniqueness of the U.S. health care system, logistical challenges, influence of prior clinical experiences, and importance of culturally appropriate communication. Few, but distinct, differences among the groups revealed specific obstacles for individual populations. Improving rates of medical home use among CIF requires targeted, immigrant-informed approaches that involve population outreach as well as systems-level changes.

Building consensus on common features and interoperability use cases for community health information systems: a Delphi study.

INTRODUCTION: Information systems for community health have become increasingly sophisticated and evidence-based in the last decade and they are now the most widely used health information systems in many low-income and middle-income countries. This study aimed to establish consensus regarding key features and interoperability priorities for community health information systems (CHISs). METHODS: A Delphi study was conducted among a systematically selected panel of CHIS experts. This impressive pool of experts represented a range of leading global health institutions, with gender and regional balance as well as diversity in their areas of expertise. Through five rounds of iterative surveys and follow-up interviews, the experts established a high degree of consensus. We supplemented the Delphi study findings with a series of focus group discussions with 10 community health worker (CHW) leaders. RESULTS: CHISs today are expected to adapt to a wide range of local contextual requirements and to support and improve care delivery. While once associated with a single role type (CHWs), these systems are now expected to engage other end users, including patients, supervisors, clinicians and data managers. Of 30 WHO-classified digital health interventions for care providers, experts identified 23 (77%) as being important for CHISs. Case management and care coordination features accounted for more than one-third (14 of 37, 38%) of the core features expected of CHISs today, a higher proportion than any other category. The highest priority use cases for interoperability include CHIS to health management information system monthly reporting and CHIS to electronic medical record referrals. CONCLUSION: CHISs today are expected to be feature-rich, to support a range of user roles in community health systems, and to be highly adaptable to local contextual requirements. Future interoperability efforts, such as CHISs in general, are expected not only to move data efficiently but to strengthen community health systems in ways that measurably improve care.

A qualitative study on determinants of the use of malaria rapid diagnostic test and anti-malarial drug prescription practices by primary healthcare workers in Ebonyi state, Nigeria.

BACKGROUND: The increased availability and use of malaria rapid diagnostic test (RDT) by primary healthcare (PHC) workers has made universal diagnostic testing before malaria treatment more feasible. However, to meaningfully resolve the problem of over-treatment with artemisinin-based combination therapy and the heightened risk of selection pressure and drug resistance, there should be appropriate response (non-prescription of anti-malarial drugs) following a negative RDT result by PHC workers. This study explored the determinants of the use of RDT and anti-malarial drug prescription practices by PHC workers in Ebonyi state, Nigeria. METHODS: Between March 2 and 10, 2020, three focus group discussions were conducted in English with 23 purposively-selected consenting PHC workers involved in the diagnosis and treatment of malaria. Data was analysed thematically as informed by the method by Braun and Clarke. RESULTS: The determinants of the use of RDT for malaria diagnosis were systemic (RDT availability and patient load), provider related (confidence in RDT and the desire to make correct diagnosis, PHC worker's knowledge and training, and fear to prick a patient), client related (fear of needle prick and refusal to receive RDT, and self-diagnosis of malaria, based on symptoms, and insistence on not receiving RDT), and RDT-related (the ease of conducting and interpreting RDT). The determinants of anti-malarial drug prescription practices were systemic (drug availability and cost) and drug related (effectiveness and side-effects of the drugs). The determinants of the prescription of anti-malarial drugs following negative RDT were provider related (the desire to make more money and limited confidence in RDT) and clients' demand while unnecessary co-prescription of antibiotics with anti-malarial drugs following positive RDT was determined by the desire to make more money. CONCLUSIONS: This evidence highlights many systemic, provider, client, and RDT/drug related determinants of PHC workers' use of RDT and anti-malarial drug prescription practices that should provide tailored guidance for relevant health policy actions in Ebonyi state, Nigeria, and similar settings.

How family physicians in Singapore recognise complexity during consultations: a qualitative study.

BACKGROUND: The prevalence of persons with complex needs in Singapore is rising. Poor understanding of what constitutes complexity impedes the identification of care gaps and development of interventions to improve care for these individuals. We aim to identify the characteristics contributing to complexity in primary care, from the Family Physicians' (FP) perspectives. METHODS: Focus group discussions (FGDs) were conducted from January to September 2021 with experienced FPs across 14 study sites, employing a qualitative descriptive approach based on a complexity framework. Data were coded independently and categorised using thematic analysis by two independent investigators. RESULTS: Five FGDs were conducted with 18 FPs aged 32 to 57 years old working in different primary care settings, with a mean of 13.5 years of primary care experience. Participants emphasised the need for a unified definition of complexity. Complexity is characterised by the presence of issues spanning across two or more domains (medical, psychological, social or behavioural) that adversely impact medical care and outcomes. Persons with complex needs contrast with persons with medically difficult issues. Medical domain issues include the number of active medical problems, poor chronic disease control, treatment interactions, ill-defined symptoms, management of end-of-life conditions and functional impairment. Psychological domain issues include the presence of mental health conditions or cognitive impairment. Social domain issues include the lack of social support, competing social responsibilities and financial issues, while behavioural domain issues include a lack of trust in healthcare workers, fixed health beliefs and poor health literacy. CONCLUSION: Recognising the medical, psychological, social and behavioural factors that contribute to complexity aids in discerning the diverse needs of individuals with complex needs. This underscores the need for additional support in these pertinent areas.

Care-receivers with physical disabilities' perceptions on having humanoid assistive robots as assistants: a qualitative study.

BACKGROUND: People with physical disabilities due to disease or injury face barriers to their daily activities and participation in society. Many depend on formal or informal caregivers for assistance to live independently. However, future healthcare challenges due to demographic changes threaten access to home care and assistants. Assistive technologies, such as robots for physical assistance, can support the independence and autonomy of people with physical disabilities. This study explore Norwegian care-receivers' perceptions of using robot assistance in their homes, including preferences for tasks acceptable or unacceptable for robot assistance and the underlying reasons. METHOD: Purposive sampling was employed to recruit 18 participants, aged between 18 and 77 years, with differences in physical function including diagnoses such as stroke, spinal cord injury, amputations, and muscular dystrophy. Qualitative data were gathered through four focus group interviews wherein participants watched videos featuring a humanoid assistive robot, EVEr3. The collected data underwent analysis using reflexive thematic analysis. RESULTS: Three themes with associated sub-themes were constructed: (a) How a robot could assist in daily life, (b) The robot's appearance and functionality, and (c) Concerns about having a robot as an assistant. The participants welcomed the idea of a future robotic assistant in areas that may contribute to an increased feeling of independence and autonomy. CONCLUSION: A robot assisting in activities of daily living would need to be individually customized to meet the needs of each user in terms of which tasks to assist with, how to assist in these defined tasks, and how it is controlled.

Gender health gaps in guideline-based inpatient cardiovascular medical and nursing care and implementation strategies to reduce the gap (HeartGap): A mixed methods study protocol.

BACKGROUND: A growing body of evidence has demonstrated that a gender-sensitive approach to healthcare is needed in all areas of medicine. Although medical and nursing guidelines include gender-sensitive care (GSC+) recommendations, the level of implementation in health care practice is unknown. This study aims to examine the current level of implementation and acceptance of GSC+ among physicians and nurses and to identify potential gaps between guidelines and practice and barriers and facilitators of GSC+ implementation, taking the perceptions of all relevant stakeholders into account. The overarching aim is to develop holistic recommended actions to strengthen GSC+. METHODS: This study has a mixed methods triangulation design. The preparation phase consisting of a literature review and a two-part (qualitative and quantitative) data analysis will be conducted in the cardiology department of 9 pilot hospitals in Berlin, North Rhine-Westphalia, Lower Saxony, Rhineland-Palatinate, Germany. 18 focus groups with clinicians and nurses as well as interviews with experts in other relevant fields will be performed. In the national roll-out phase, a questionnaire survey will be conducted with hospital clinicians (n = 382), nurses (n = 386) and patients (n = 388). DISCUSSION: This study will provide comprehensive insights into the implementation and acceptance of GSC+ in cardiology from the perspective of doctors, nurses, patients, stakeholders and experts in relevant fields, such as policy and education. A focus will also be on the extent to which age or gender of health professionals, region and hospital type influence the implementation of GSC+. The identification of GSC+ implementation barriers and facilitators should help to improve the standard of care for cardiology patients of all genders. The outcomes from this study can be used to develop measures and recommended actions for the successful and sustainable implementation of gender-sensitive care. TRIAL REGISTRATION: The study is registered in the German Register of Clinical Studies (DRKS) under study number DRKS00031317.

Understanding the psychosocial determinants of effective disease management in rheumatoid arthritis to prevent persistently active disease: a qualitative study.

BACKGROUND: According to epidemiological studies, psychosocial factors are known to be associated with disease activity, physical activity, pain, functioning, treatment help-seeking, treatment waiting times and mortality in people with rheumatoid arthritis (RA). Limited qualitative inquiry into the psychosocial factors that add to RA disease burden and potential synergistic interactions with biological parameters makes it difficult to understand patients' perspectives from the existing literature. AIM: This study aimed to gather in-depth patient perspectives on psychosocial determinants that drive persistently active disease in RA, to help guide optimal patient care. METHODS: Patient research partners collaborated on the research design and materials. Semistructured interviews and focus groups were conducted online (in 2021) with patients purposively sampled from diverse ethnicities, primary languages, employment status and occupations. Data were analysed using inductive thematic analysis. RESULTS: 45 patients participated across 28 semistructured interviews and three focus groups. Six main themes on psychosocial determinants that may impact RA management were identified: (1) healthcare systems experiences, (2) patient education and health literacy, (3) employment and working conditions, (4) social and familial support, (5) socioeconomic (dis)advantages, and (6) life experiences and well-being practices. CONCLUSION: This study emphasises the importance of clinicians working closely with patients and taking a holistic approach to care that incorporates psychosocial factors into assessments, treatment plans and resources. There is an unmet need to understand the relationships between interconnected biopsychosocial factors, and how these may impact on RA management.

Implementation of a digital tool for population management in Primary Health Care.

OBJECTIVE: Describe the implementation of a digital diagnostic and territorial monitoring tool in primary healthcare. METHODS: Quantitative and qualitative study, developed in 14 basic healthcare units in São Paulo, with community health workers, coordinators, nurses, and physicians. Data collection occurred in four phases: analysis of the instruments used by the team for territory management; development of the digital tool; training and implementation; and evaluation after 90 days using focus groups. Descriptive analyses were conducted by calculating absolute and relative frequencies to treat quantitative data. Qualitative data were subjected to content analysis. RESULTS: Three hundred thirty-four professionals participated in the study. In the first step, territory management's main challenges were filling out various instruments, system failures, data inconsistency, internet infrastructure/network, and lack of time. Therefore, a digital tool was developed consisting of 1) a spreadsheet recording the number of family members and markers of health conditions, date of visit, and number of return visits; 2) a spreadsheet with a summary of families visited, not visited, and refusals; and 3) a panel with a summary of the data generated instantly. In the evaluation, after the initial use of the tool, the themes that emerged were integration of the tool into daily work, evaluation of the digital tool implementation process, and improvement and opportunities for improvement. CONCLUSIONS: Faced with the challenges faced by family healthcare teams when filling out systems and managing the territory, the tool developed provided greater reliability and agility in data visualization, reduced the volume of instruments, and optimized the work process.

Continuous palliative sedation until death: a qualitative study of palliative care clinicians' experiences.

BACKGROUND: The practice of continuous palliative sedation until death is the subject of much medical and ethical debate, which is reflected in the inconsistency that persists in the literature regarding the definition and indications of palliative sedation. AIM: This study aims to gain a better understanding of palliative care clinicians' experiences with continuous palliative sedation. DESIGN: We conducted a qualitative study based on focus group discussions. SETTING/PARTICIPANTS: We conducted six focus groups with a total of 28 palliative care clinicians (i.e., 15 nurses, 12 physicians, and 1 end-of-life doula) from diverse care settings across Canada, where assisted dying has recently been legalized. RESULTS: An interpretative phenomenological analysis was used to consolidate the data into six key themes: responding to suffering; grappling with uncertainty; adapting care to ensure ongoing quality; grounding clinical practice in ethics; combining medical expertise, relational tact, and reflexivity; and offering an alternative to assisted death. CONCLUSIONS: Interaction with the patient's family, uncertainty about the patient's prognosis, the concurrent practice of assisted dying, and the treatment of existential suffering influence the quality of sedation and indicate a lack of clear palliative care guidelines. Nevertheless, clinicians exhibit a reflective and adaptive capacity that can facilitate good practice.

The Role of Chief Medical officers in making Public Health Overview Documents in Norwegian Municipalities. A qualitative Study.

AIMS: To investigate how Chief Medical Officers experience their role in the municipalities´ work with making the public health overview documents, demanded by the Norwegian Public Health Act from 2012. METHODS: A qualitative study with semi-structured focus group interviews with 21 Chief Medical Officers from 20 different municipalities in Norway. The interviews were conducted in 2017. The data were analyzed thematically. RESULTS: The Chief Medical Officers were mainly positive to participating in making public health overview documents. They took on roles as leaders of the work, medical advisors, data collectors towards local GPs and listening post to other sectors. Organizational factors like too small positions and a lack of tradition to involve the CMO in public health work were experienced as barriers to their involvement. The collaboration with the public health coordinators was said to be rewarding, and the intersectoral process involved employees from other sectors in a new way in public health. Although there were some positive experiences, several CMOs considered the use and impact of the public health overview document as limited. CONCLUSION: There was a large variation in the amount and the type of involvement the Chief Medical Officers had in making the public health overview documents in Norwegian municipalities. More research is needed to understand if this has any consequences for the quality of public health work in the municipalities and whether it is a sign of a changing role of the Chief Medical Officers.

When one door closes: a qualitative exploration of women's experiences of access to sexual and reproductive health services during the COVID-19 lockdown in Nigeria.

BACKGROUND: COVID-19 pandemic widely disrupted health services provision, especially during the lockdown period, with females disproportionately affected. Very little is known about alternative healthcare sources used by women when access to conventional health services became challenging. This study examined the experiences of women and adolescent girls regarding access to sexual and reproductive health (SRH) services during the COVID-19 lockdown in Nigeria and their choices of alternative healthcare sources. METHODS: The study sites were two northern states, two southern states, and the Federal Capital Territory. Qualitative data were obtained through 10 focus group discussion sessions held with married adolescents, unmarried adolescents, and older women of reproductive age. The data were transcribed verbatim and analysed using a thematic approach and with the aid of Atlas ti software. RESULTS: Women reported that access to family planning services was the most affected SRH services during the COVID-19 lockdown. Several barriers to accessing SRH services during COVID-19 lockdown were reported, including restriction of vehicular movement, harassment by law enforcement officers, fear of contracting COVID-19 from health facilities, and fear of undergoing compulsory COVID-19 tests when seeking care in health facilities. In the face of constrained access to SRH services in public sector facilities during the COVID-19 lockdown, women sought care from several alternative sources, mostly locally available and informal services, including medicine vendors, traditional birth attendants, and neighbours with some health experience. Women also widely engaged in self-medication, using both orthodox drugs and non-orthodox preparations like herbs. The lockdown negatively impacted on women's SRH, with increased incidence of sexual- and gender-based violence, unplanned pregnancy resulting from lack of access to contraceptives, and early marriage involving adolescents with unplanned pregnancies. CONCLUSION: COVID-19 negatively impacted access to SRH services and forced women to utilise mostly informal service outlets and home remedies as alternatives to conventional health services. There is a need to ensure the continuity of essential SRH services during future lockdowns occasioned by disease outbreaks. Also, community systems strengthening that ensures effective community-based health services, empowered community resource persons, and health-literate populations are imperative for overcoming barriers to healthcare access during future lockdowns.

Pursuance of a Yoruba name for cervical cancer in Southwest Nigeria: a case study.

OBJECTIVES: Participants' comprehension of research process affects the quality of research output, which is the reason why translation of research instruments into local languages is standard practice. Literature has consistently reported that in Africa, knowledge about cervical cancer is low but paradoxically, expressed, and actual uptake of human papillomavirus vaccine for its prevention is high. This study explored the Yoruba names of cervical cancer among Yoruba people in Ibadan, Nigeria to guide the translation of cervical cancer research instruments to Yoruba language. DESIGN: Exploratory case study design was used and data were obtained with 10 in-depth interviews and four focused group discussions. Data were analysed using content analysis. SETTINGS: The study took place in Ibadan North local government area, Southwest Nigeria. PARTICIPANTS: These were 4 traditional healers, 3 Yoruba linguists, 3 public health educators and 38 parents of adolescents. MEASURES: These were Yoruba names for cervical cancer and their meanings. RESULTS: Participants were aware of cervical cancer but only the traditional healers and public health educators had names for it. These names were highly varied. The public health educators gave names that were linked with different parts of the female reproductive system and external genital which were actually different medical conditions. Each traditional healer also had different names for cervical cancer, which either described the female body parts, or symptoms of female genital infections. These various names can lead to unnecessary misconceptions and misinformation about cervical cancer, its prevention, management, and research. CONCLUSIONS: There was no consensus Yoruba name for cervical cancer among the study participants. Efforts to educate the Yoruba speaking populace about cervical cancer, its prevention, management and participation in its research can be frustrated if a generally accepted Yoruba name is not provided for this cancer. Stakeholders' collaboration is required to get an appropriate Yoruba name for cervical cancer.

Public perceptions on carbon removal from focus groups in 22 countries.

Carbon removal is emerging as a pillar of governmental and industry commitments toward achieving Net Zero targets. Drawing from 44 focus groups in 22 countries, we map technical and societal issues that a representative sample of publics raise on five major types of carbon removal (forests, soils, direct air capture, enhanced weathering, and bioenergy with carbon capture and storage), and how these translate to preferences for governance actors, mechanisms, and rationales. We assess gaps and overlaps between a global range of public perceptions and how carbon removal is currently emerging in assessment, innovation, and decision-making. In conclusion, we outline key societal expectations for informing assessment and policy: prioritize public engagement as more than acceptance research; scrutiny and regulation of industry beyond incentivizing innovation; systemic coordination across sectors, levels, and borders; and prioritize underlying causes of climate change and interrelated governance issues.

Access to family planning services and associated factors among young people in Lira city northern Uganda.

BACKGROUND: Access to family planning services among young people is crucial for reproductive health. This study explores the access and associated factors among young people in Lira City, Northern Uganda. METHODS AND MATERIALS: A mixed-methods study was conducted in March to April 2022. Quantitative data were collected using a structured questionnaire from 553 participants aged 15-24 years. Qualitative data were obtained through in-depth interviews and focus group discussions. Data analysis included univariate, bivariate, and multivariate analyses for quantitative data, while interpretative phenomenological analysis was used for qualitative data. RESULTS: Overall, 31.7% of the respondents had a good perceived access to family planning services, with 64.6% reporting perceived availability of FP methods. Challenges included lack of privacy (57.7%), fear of mistreatment (77.2%), and decision-making difficulties (66.2%). Among females, good perceived access to FP services was less likely among urban residents (AOR: 0.22, 95% CI: 0.09-0.53), Christian respondents (AOR: 0.51, 95% CI: 0.01-0.36), Muslim respondents (AOR: 0.07, 95% CI: 0.01-0.55) and respondents with poor attitude to FP services (AOR: 0.39, 95% CI: 0.24-0.64), but more likely among respondents with a sexual a partner (AOR: 4.48, 95% CI: 2.60-7.75). Among males, good perceived access to FP services was less likely among respondents living with parents (AOR: 0.19, 95% CI: 0.05-0.67) but more likely among respondents with good knowledge of FP services (AOR: 2.28, 95% CI: 1.02-5.32). Qualitative findings showed that three themes emerged; knowledge of family planning methods, beliefs about youth contraception and, friendliness of family planning services. CONCLUSION: The study revealed a substantial gap in perceived access to family planning services among young people in Lira City. Barriers include privacy concerns, fear of mistreatment, and decision-making difficulties. Tailored interventions addressing urban access, religious beliefs for females, and knowledge enhancement for males are essential. Positive aspects like diverse FP methods and physical accessibility provide a foundation for targeted interventions. Youth-friendly services, comprehensive sexual education, and further research are emphasized for a nuanced understanding and effective interventions in Northern Uganda.

Multilingual education: medical interns perceptions regarding the usefulness of non-mother tongue communications skills taught during the undergraduate curriculum.

BACKGROUND: This paper investigates the perceptions of medical interns regarding the usefulness of non-mother tongue communication skills taught during the undergraduate curriculum at the University of Cape Town in South Africa. In 2003, the university decided to incorporate Afrikaans and IsiXhosa communication skills into the new MBChB curriculum in order to meet the Faculty of Health Sciences goals to promote quality and equity in healthcare, and to prepare graduating health practitioners for multilingual communities where they would be serving. Despite annual internal evaluations and reviews of the languages courses, the usefulness, if any, of the additional languages in the working clinical environment had not been determined. METHODS: Data were collected during the second year of medical internship across a five-year period through survey questionnaires, as well as focus group interviews conducted in the Western Cape, South Africa. Surveys were conducted from 2009 to 2013. RESULTS: The study shows that the usefulness of each of the probed categories was not consistent across both languages. The interns expressed a need for an overall improvement of the isiXhosa course offering, while the outcomes for the Afrikaans language were more positive across all categories except for cultural understanding. CONCLUSION: The study indicates a positive trend amongst the interns towards developing usefulness in communication skills in Afrikaans and isiXhosa to communicate with their patients.

Cancer care coordination in rural Hawaii: a focus group study.

BACKGROUND: Rural populations consistently experience a disproportionate burden of cancer, including higher incidence and mortality rates, compared to the urban populations. Factors that are thought to contribute to these disparities include limited or lack of access to care and challenges with care coordination (CC). In Hawaii, many patients residing in rural areas experience unique challenges with CC as they require inter-island travel for their cancer treatment. In this focus group study, we explored the specific challenges and positive experiences that impact the CC in rural Hawaii cancer patients. METHODS: We conducted two semi-structured focus group interviews with cancer patients receiving active treatment for any type of cancer (n = 8). The participants were recruited from the rural areas of Hawaii, specifically the Hawaii county and Kauai. Rural was defined using the Rural-Urban Commuting Area Codes (RUCA; rural ≥ 4). The focus group discussions were facilitated using open-ended questions to explore patients' experiences with CC. RESULTS: Content analysis revealed that 47% of the discussions were related to CC-related challenges, including access to care (27.3%), insurance (9.1%), inter-island travel (6.1%), and medical literacy (4.5%). Other major themes from the discussions focused on facilitators of CC (30.3%), including the use of electronic patient portal (12.1%), team-based approach (9.1%), family caregiver support (4.5%), and local clinic staff (4.5%). CONCLUSION: Our findings indicate that there are notable challenges in rural patients' experiences regarding their cancer care coordination. Specific factors such as the lack of oncologist and oncology services, fragmented system, and the lack of local general medical providers contribute to problems with access to care. However, there are also positive factors found through the help of facilitators of CC, notability the use of electronic patient portal, team-based approach, family caregiver support, and local clinic staff. These findings highlight potential targets of interventions to improve cancer care delivery for rural patients. TRIAL REGISTRATION: Not required.

Implementation and early effects of medicaid policy interventions to promote racial equity in pregnancy and early childhood outcomes in Pennsylvania: protocol for a mixed methods study.

BACKGROUND: There are large racial inequities in pregnancy and early childhood health within state Medicaid programs in the United States. To date, few Medicaid policy interventions have explicitly focused on improving health in Black populations. Pennsylvania Medicaid has adopted two policy interventions to incentivize racial health equity in managed care (equity payment program) and obstetric service delivery (equity focused obstetric bundle). Our research team will conduct a mixed-methods study to investigate the implementation and early effects of these two policy interventions on pregnancy and infant health equity. METHODS: Qualitative interviews will be conducted with Medicaid managed care administrators and obstetric and pediatric providers, and focus groups will be conducted among Medicaid beneficiaries. Quantitative data on healthcare utilization, healthcare quality, and health outcomes among pregnant and parenting people will be extracted from administrative Medicaid healthcare data. Primary outcomes are stakeholder perspectives on policy intervention implementation (qualitative) and timely prenatal care, pregnancy and birth outcomes, and well-child visits (quantitative). Template analysis methods will be applied to qualitative data. Quantitative analyses will use an interrupted time series design to examine changes over time in outcomes among Black people, relative to people of other races, before and after adoption of the Pennsylvania Medicaid equity-focused policy interventions. DISCUSSION: Findings from this study are expected to advance knowledge about how Medicaid programs can best implement policy interventions to promote racial equity in pregnancy and early childhood health.

Meaningful Patient Engagement in Adolescent and Young Adult (AYA) Cancer Research: A Framework for Qualitative Studies.

Over the last two decades, patient engagement in cancer research has evolved significantly, especially in addressing the unique challenges faced by adolescent and young adult (AYA) cancer populations. This paper introduces a framework for meaningful engagement with AYA cancer patient research partners, drawing insights from the "FUTURE" Study, a qualitative study that utilizes focus groups to explore the impact of cancer diagnosis and treatment on the sexual and reproductive health of AYA cancer patients in Canada. The framework's development integrates insights from prior works and addresses challenges with patient engagement in research specific to AYA cancer populations. The framework is guided by overarching principles (safety, flexibility, and sensitivity) and includes considerations that apply across all phases of a research study (collaboration; iteration; communication; and equity, diversity, and inclusion) and tasks that apply to specific phases of a research study (developing, conducting, and translating the study). The proposed framework seeks to increase patient engagement in AYA cancer research beyond a supplementary aspect to an integral component for conducting research with impact on patients.