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Background: Hypertension is the leading cause of death and disability. Clinical care for patients with hypertension in Kenya leverages referral networks to provide basic and specialized healthcare services. However, referrals are characterized by non-adherence and delays in completion. An integrated health information technology (HIT) and peer-based support strategy to improve adherence to referrals and blood pressure control was proposed. A formative assessment gathered perspectives on barriers to referral completion and garnered thoughts on the proposed intervention. Methods: We conducted a qualitative study in Kitale, Webuye, Kocholya, Turbo, Mosoriot and Burnt Forest areas of Western Kenya. We utilized the PRECEDE-PROCEED framework to understand the behavioral, environmental and ecological factors that would influence uptake and success of our intervention. We conducted four mabaraza (customary heterogenous community assemblies), eighteen key informant interviews, and twelve focus group discussions among clinicians, patients and community members. The data obtained was audio recorded alongside field note taking. Audio recordings were transcribed and translated for onward coding and thematic analysis using NVivo 12. Results: Specific supply-side and demand-side barriers influenced completion of referral for hypertension. Key demand-side barriers included lack of money for care and inadequate referral knowledge. On the supply-side, long distance to health facilities, low availability of services, unaffordable services, and poor referral management were reported. All participants felt that the proposed strategies could improve delivery of care and expressed much enthusiasm for them. Participants appreciated benefits of the peer component, saying it would motivate positive patient behavior, and provide health education, psychosocial support, and assistance in navigating care. The HIT component was seen as reducing paper work, easing communication between providers, and facilitating tracking of patient information. Participants also shared concerns that could influence implementation of the two strategies including consent, confidentiality, and reduction in patient-provider interaction. Conclusions: Appreciation of local realities and patients' experiences is critical to development and implementation of sustainable strategies to improve effectiveness of hypertension referral networks. Incorporating concerns from patients, health care workers, and local leaders facilitates adaptation of interventions to respond to real needs. This approach is ethical and also allows research teams to harness benefits of participatory community-involved research. Trial registration: Clinicaltrials.gov, NCT03543787, Registered June 1, 2018. https://clinicaltrials.gov/ct2/show/NCT03543787 [ABSTRACT FROM AUTHOR]

Background: Unsatisfactory cancer screening results are often associated with poor prognosis. This study synthesized the literatures addressing the impact of patient navigation (PN) interventions on population-based breast cancer screening promotion to identify characteristics of the model for addressing breast cancer disparities. Methods: We searched Pubmed, Embase, Web of Science, and the Cochrane Central Registry from inception to 31 December 2020 for randomized controlled trials (PROSPERO: CRD42021246890). We double blindly abstracted data and assessed study quality. We assessed screening completion rates and diagnostic resolution using random-effects models between those receiving navigation and controls. Results: Of 236 abstracts identified, 15 studies met inclusion criteria. Nine of the papers evaluated the impact of PN on breast screening, while the other six were on the resolution of abnormal screening results. Compared to the non-PN group, PN improved screening completion (OR: 2.0, 95% CI: 1.4–2.8]) and shortened the time to diagnosis (WMD: − 9.90 days, 95% CI: − 19.09 to − 0.71). Conclusions: Patient navigation improves breast cancer screening rates but does not improve resolution of abnormal tests. [ABSTRACT FROM AUTHOR]

Background & Objective: Epidermolysis bullosa (EB) is the term used for a group of genetic skin fragility disorders. For those living with EB, pain represents a constant challenge, with blistering and tasks such as changing dressings, adding to the distress. This paper focuses on describing and exploring the health‐care needs of children, adults and families who are affected by EB. The specific aim of the paper is to identify the needs of the EB population with a view towards informing the development of a community liaison service to support adults living with EB and the parents/carers of children living with EB. Setting and Participants: Interviews with six adults and the parents of eight children with EB were conducted. The data were analysed thematically. All participants were resident on the island of Ireland and are therefore reflecting on services in this geographic region. Results: Participants' needs were grouped into five themes: support managing physical health‐care issues; access to community/home‐based services; EB‐specific information and psychosocial support; effective interaction with health‐care professionals; and advice regarding benefits and entitlements. Discussion and Conclusions: This article represents the health‐care needs and preferences of a broad spectrum of those with EB, highlighting the need for a comprehensive service regardless of the severity of the condition. [ABSTRACT FROM AUTHOR]

Background: The concept of patient navigation was first established in the USA to support vulnerable patient groups in receiving timely and comprehensive access to cancer care. It has recently gained increasing interest in Germany to support patients with chronic diseases in a fragmented healthcare system. The aim of this paper is to present the development of such a model adapted to the German context based on the results of mixed-methods studies investigating the need for and barriers to patient-oriented care.Methods: In a process adapted from Delphi rounds, we conducted regular structured workshops with investigators of the project to discuss results of their studies and identify content and structure of the model based on the data. Workshop discussions were structured along seven core components of a navigation model including target patient groups, navigator tasks, occupational background and education of navigators, and patient-navigator interaction mode.Results: Using an approach based on empirical data of current care practices with special focus on patients' perspectives, we developed a patient-oriented navigation model for patients who have experienced stroke and lung cancer in the German healthcare context. Patients without personal social support were viewed as struggling most with the healthcare system, as well as multimorbid and elderly patients. Navigators should serve as a longer-term contact person with a flexible contact mode and timing based on the individual situation and preferences of patients. Navigator tasks include the provision of administrative and organizational support as well as referral and guidance to available resources and beneficial health programs with special forms of knowledge. Implementation of the navigator should be flexibly located to ensure a reliable outreach to vulnerable patients for first contact in settings like specialized in-patient and out-patient settings, while navigation itself focuses on care coordination in the out-patient setting.Conclusion: Flexibility of navigator tasks needed to be a core characteristic of a navigation model to be perceived as supportive from patients' perspectives. In a subsequent feasibility study, an intervention based on the model will be evaluated according to its acceptance, demand, and practicality. [ABSTRACT FROM AUTHOR]

Objective: To assess rates of traversing barriers to care to access optimal clinical outcomes in people with migraine internationally. Background: People in need of medical care for migraine should consult a health care professional knowledgeable in migraine management, obtain an accurate diagnosis, and receive an individualized treatment plan, which includes scientific society guideline-recommended treatments where appropriate. Methods: The Chronic Migraine Epidemiology and Outcomes-International (CaMEO-I) Study was a cross-sectional, web-based survey conducted from July 2021 through March 2022 in Canada, France, Germany, Japan, the United Kingdom, and the United States (US). Respondents who met modified International Classification of Headache Disorders, 3rd edition, criteria for migraine and had Migraine Disability Assessment Scale (MIDAS) scores of ≥ 6 (i.e., mild, moderate, or severe disability) were deemed to need medical care and were included in this analysis. Minimally effective treatment required that participants were currently consulting a health care professional for headache (barrier 1), reported an accurate diagnosis (barrier 2), and reported use of minimally appropriate pharmacologic treatment (barrier 3; based on American Headache Society 2021 Consensus Statement recommendations). Proportions of respondents who successfully traversed each barrier were calculated, and chi-square tests were used to assess overall difference among countries. Results: Among 14,492 respondents with migraine, 8,330 had MIDAS scores of ≥ 6, were deemed in need of medical care, and were included in this analysis. Current headache consultation was reported by 35.1% (2926/8330) of respondents. Compared with the US, consultation rates and diagnosis rates were statistically significantly lower in all other countries except France where they were statistically significantly higher. Total appropriate treatment rates were also statistically significantly lower in all other countries compared with the US except France, which did not differ from the US. All 3 barriers were traversed by only 11.5% (955/8330) of respondents, with differences among countries (P < 0.001). Conclusions: Of people with migraine in need of medical care for migraine, less than 15% traverse all 3 barriers to care. Although rates of consultation, diagnosis, and treatment differed among countries, improvements are needed in all countries studied to reduce the global burden of migraine. Trial registration: NA. [ABSTRACT FROM AUTHOR]

Abstract Background & Objective Epidermolysis bullosa (EB) is the term used for a group of genetic skin fragility disorders. For those living with EB, pain represents a constant challenge, with blistering and tasks such as changing dressings, adding to the distress. This paper focuses on describing and exploring the health‐care needs of children, adults and families who are affected by EB. The specific aim of the paper is to identify the needs of the EB population with a view towards informing the development of a community liaison service to support adults living with EB and the parents/carers of children living with EB. Setting and Participants Interviews with six adults and the parents of eight children with EB were conducted. The data were analysed thematically. All participants were resident on the island of Ireland and are therefore reflecting on services in this geographic region. Results Participants’ needs were grouped into five themes: support managing physical health‐care issues; access to community/home‐based services; EB‐specific information and psychosocial support; effective interaction with health‐care professionals; and advice regarding benefits and entitlements. Discussion and Conclusions This article represents the health‐care needs and preferences of a broad spectrum of those with EB, highlighting the need for a comprehensive service regardless of the severity of the condition.

Trans people face substantial barriers to care worldwide. In Greece, limited evidence regarding trans health and actions to improve accessibility in healthcare services is available. This study aims to identify barriers to care for transgender populations in order to discuss the potential gaps in healthcare providers' training in this direction. A scoping review was conducted in PubMed. Study eligibility criteria included: (a) reporting on at least one barrier to care for trans individuals or at least one educational need for healthcare providers; (b) free full text availability; and (c) publishing from 2015 and afterwards. Discrepancies in study inclusion were discussed between the research team until consensus was reached. Out of 560 identified references, 69 were included in this study, with only three reporting empirical research from Greece. Several individual-, interpersonal-, and institutional-level barriers to healthcare for trans individuals were identified. These included discriminatory treatment by healthcare providers, a lack of knowledgeable providers trained on trans-specific healthcare issues, lack of trusted and safe healthcare environments, health coverage-related issues, and healthcare systems that do not take into account particular transgender health issues during care provision. Improving access to care for transgender people is a multidimensional issue that should be addressed at the societal, healthcare, and research levels. Actions for future professional education initiatives should focus on respecting transgender identity, protecting confidentiality, creating trusted provider–patient relationships, and providing sufficient competency on trans-specific healthcare issues. [ABSTRACT FROM AUTHOR]

Introduction: Indigenous people who use unregulated drugs (IPWUD) face significant barriers to care, including sparse availability of culturally safe health services. Integrating Indigenous traditional and cultural treatments (TCT) into health service delivery is one way to enhance culturally safe care. In a Canadian setting that implemented cultural safety reforms, we sought to examine the prevalence and correlates of client perceptions of primary care provider awareness of TCT among IPWUD. Methods: Data were derived from two prospective cohort studies of PWUD in Vancouver, Canada between December 2017 and March 2020. A generalized linear mixed model with logit-link function was used to identify longitudinal factors associated with perceived provider awareness of TCT. Results: Among a sample of 507 IPWUD who provided 1200 survey responses, a majority (n = 285, 56%) reported their primary care provider was aware of TCT. In multiple regression analyses, involvement in treatment decisions always (Adjusted Odds Ratio [AOR] = 3.6; 95% confidence interval [CI]: 1.6–7.8), involvement in treatment decisions most or some of the time (AOR = 3.3; 95% CI: 1.4–7.7), comfort with provider or clinic (AOR = 2.7; 95% CI: 1.5–5.0), and receiving care from a social support worker (AOR = 1.5; 95% CI: 1.0–2.1) were positively associated with provider awareness of TCT. Conclusion: We found high levels of perceived provider awareness of TCT and other domains of culturally safe care within a cohort of urban IPWUD. However, targeted initiatives that advance culturally safe care are required to improve healthcare and health outcomes for IPWUD, who continue to bear a disproportionate burden of substance use harms. [ABSTRACT FROM AUTHOR]

Background: Unsafe abortion is a major medical and public health problem in Ethiopia and contributes significantly to abortion-related morbidity and mortality in the country. We explored women's experiences with modern contraceptives and identified barriers to accessing safe abortion care and other sexual and reproductive health services. Methods: We recruited participants from six health clinics and a public hospital in southern Ethiopia. We conducted one-on-one interviews with 34 women aged 18–49 years who sought abortion care within the past twelve months of the study. Interviews were recorded, transcribed verbatim, translated to English, and imported into Dedoose software. We analysed the data using a directed content analysis. Results: Our findings show prevailing belief among participants that contraceptives caused infertility, abnormalities in subsequent pregnancies, and other side effects. Some of the women suggested that medical or unsafe abortions were a better alternative to using modern contraceptives for terminating unplanned pregnancies. Barriers to accessing safe abortion care included costs of services, lack of privacy, and fear of judgment from providers. Women who had negative experiences with providers were more likely to seek unsafe abortion the second time around. Conclusion: Providers need to address women's concerns about using modern contraceptives, educate their clients about the best ways to prevent unwanted pregnancies, and provide non-judgemental services. In addition, comprehensive counselling services that include contraceptive counselling should be made available to women before, during, and after abortion care. Finally, providers should strive to be facilitators of, not barriers to, safe abortion care. [ABSTRACT FROM AUTHOR]

The term ‘resilience’ has grown in its usage across a range of disciplines and practices. The US military and the British armed forces have typified this increasing use of ‘resilience’ in recent years within such initiatives as Comprehensive Soldier Fitness (CSF) and throughout British Army Doctrine. However by unpacking what being ‘resilient’ for soldiers might mean we explore the interaction between their personal ‘masculine’ characteristics, the structural environment within which they operate, and the civilian life they return to. In doing so this paper offers a critical sociological analysis combining the agency of the soldiers’ body with the structure of the military as a [total institution] to problematize issues of masculinity, stigma and resilience within the military setting. As such, we question if the fostering of ‘resilience’ in military personnel is something that may be productive during service, but counter-productive thereafter when service personnel return to civilian life as veterans. [ABSTRACT FROM PUBLISHER]

Background: Many people experience long-term symptoms such as fatigue, cognitive problems, or shortness of breath after an acute infection with COVID-19. This emerging syndrome, known as long COVID, is new and complex in many aspects. This study aims to collect the experiences of people with long COVID with ambulatory healthcare structures. Methods: Four focus groups were conducted with a total of 23 adults with long COVID in June and July 2022. These discussions were audio-recorded, subsequently transcribed, and analyzed using the qualitative content analysis of Mayring and Kuckartz. Results: Fourteen out of 19 participants who had a primary care encounter regarding their long COVID symptoms did not perceive it as helpful. Many respondents reported that their general practitioners did not take their long COVID symptoms seriously and did not refer them to specialists or made therapeutic recommendations. However, some participants reported that they were prescribed non-pharmaceutical therapies (e.g., group meetings supported by psychotherapists, occupational therapy, etc.) that improved their condition. 14 of 23 respondents perceived care barriers such as providers' lack of awareness of long COVID, poor access to specialists, a lack of specialized care (e.g., long COVID clinics), or high bureaucratic hurdles for specific healthcare services. To improve medical care, participants suggested campaigns to raise awareness of long COVID among healthcare providers and the general population, increase research and government investments regarding the development of treatment structures for long COVID, expanding existing therapeutic services, and establishing one-stop shops for integrated specialist healthcare for people with long COVID. Conclusions: Several implications for healthcare professionals and policymakers can be derived from this study: (1) general practitioners should take the symptoms of long COVID seriously, assume a care coordinating role, make referrals, and establish contact with long COVID clinics; (2) care planners should focus on developing interprofessional evidence-based care and treatment approaches for long COVID; (3) existing care structures such as long COVID outpatient clinics should be expanded. The overarching goal must be to develop consistent guidelines for long COVID diagnosis, care, and treatment. Trial registration: The study is registered in the German register for clinical trials (DRKS00026007, first registration on 09/09/2021). [ABSTRACT FROM AUTHOR]

Abstract Background Hypertension is the leading cause of death and disability. Clinical care for patients with hypertension in Kenya leverages referral networks to provide basic and specialized healthcare services. However, referrals are characterized by non-adherence and delays in completion. An integrated health information technology (HIT) and peer-based support strategy to improve adherence to referrals and blood pressure control was proposed. A formative assessment gathered perspectives on barriers to referral completion and garnered thoughts on the proposed intervention. Methods We conducted a qualitative study in Kitale, Webuye, Kocholya, Turbo, Mosoriot and Burnt Forest areas of Western Kenya. We utilized the PRECEDE-PROCEED framework to understand the behavioral, environmental and ecological factors that would influence uptake and success of our intervention. We conducted four mabaraza (customary heterogenous community assemblies), eighteen key informant interviews, and twelve focus group discussions among clinicians, patients and community members. The data obtained was audio recorded alongside field note taking. Audio recordings were transcribed and translated for onward coding and thematic analysis using NVivo 12. Results Specific supply-side and demand-side barriers influenced completion of referral for hypertension. Key demand-side barriers included lack of money for care and inadequate referral knowledge. On the supply-side, long distance to health facilities, low availability of services, unaffordable services, and poor referral management were reported. All participants felt that the proposed strategies could improve delivery of care and expressed much enthusiasm for them. Participants appreciated benefits of the peer component, saying it would motivate positive patient behavior, and provide health education, psychosocial support, and assistance in navigating care. The HIT component was seen as reducing paper work, easing communication between providers, and facilitating tracking of patient information. Participants also shared concerns that could influence implementation of the two strategies including consent, confidentiality, and reduction in patient-provider interaction. Conclusions Appreciation of local realities and patients’ experiences is critical to development and implementation of sustainable strategies to improve effectiveness of hypertension referral networks. Incorporating concerns from patients, health care workers, and local leaders facilitates adaptation of interventions to respond to real needs. This approach is ethical and also allows research teams to harness benefits of participatory community-involved research. Trial registration Clinicaltrials.gov, NCT03543787, Registered June 1, 2018. https://clinicaltrials.gov/ct2/show/NCT03543787

Belize has the highest national prevalence of type 2 diabetes (T2D) of Central and South America, and fifth direst in the world. T2D is the leading cause of death in Belize, a country facing burdens of increasing prevalence with few resources. Since March of 2020, the COVID-19 pandemic has exacerbated the difficulties of those living with T2D in Belize. To address T2D issues in Belize, our interdisciplinary research team explored the barriers to care and self-management for adult patients with T2D in Belize prior to and during the COVID-19 pandemic. Research relationships between Canadian (ARH) and Belizean (LE) authors have been ongoing since 2016. Together we used a qualitative Constructivist Grounded Theory design generating knowledge through 35 semi-structured patient interviews, 25 key informant discussions, and participant observation with field notes between February 2020 to September 2021. We used Dedoose analysis software for a systematized thematic coding process, as well as iterative verification activities. Findings revealed several barriers to care and self-management, including: 1) the tiered health and social care system with major gaps in coverage; 2) the unfulfilled demand for accurate health information and innovative dissemination methods; and 3) the compounding of loss of community supports, physical exercise, and health services due to COVID-19 restrictions. In the post-pandemic period, it is necessary to invest in physical, nutritional, economic, and psychosocial health through organized activities adaptable to changeable public health restrictions. Recommendations for activities include sending patients informational and motivational text messages, providing recipes with accessibly sourced T2D foods, televising educational workshops, making online tools more accessible, and mobilising community and peer support networks. [ABSTRACT FROM AUTHOR]

Background Though research among Canadian Forces Health Services (CFHS) personnel is limited, the literature suggests formal healthcare is underused. Though much research has been conducted on particular barriers (e.g., stigma), examining a breadth of barriers could better inform behavioral interventions. Furthermore, work has yet to examine the indirect effects of barriers through their impact on intentions to access care. Methods CFHS participants were randomly assigned to complete either a mental health (N = 503) or physical health (N = 530) version of the survey. The survey included questions on the perceived impact of barriers, health-related information (e.g., past access to care), intention to seek care, and two hypothetical scenarios (i.e., pneumonia and back injury or post-traumatic stress disorder and depression) as a proxy of access to care. Multiple regressions using Hayes PROCESS macro were conducted to assess the direct and indirect effects (through intentions) of the barriers on hypothetical access to care. Results Results show conflict with career goals barriers were indirectly linked to all health outcomes, and directly linked to mental health outcomes. Treatment preference barriers were directly and indirectly linked to care seeking only for mental health, while resource barriers were directly linked to care seeking only for physical health. Knowledge and ability to access care barriers were directly linked to care seeking for depression and pneumonia. Implications Interventions to improve treatment-seeking should be developed only after the behavioural antecedents are understood, and should focus on combining evidence-based techniques to simultaneously target multiple aspects of the behaviour. [ABSTRACT FROM AUTHOR]

Recent exciting advances in the diagnosis and management of breast cancer have improved outcomes for Canadians diagnosed and living with breast cancer. However, the reach of this progress has been uneven; disparities in accessing care across Canada are increasingly being recognized and are at risk of broadening. Members of racial minority groups, economically disadvantaged individuals, or those who live in rural or remote communities have consistently been shown to experience greater challenges in accessing 'state of the art' cancer care. The Canadian context also presents unique challenges—vast geography and provincial jurisdiction of the delivery of cancer care and drug funding create significant interprovincial differences in the patient experience. In this commentary, we review the core concepts of health equity, barriers to equitable delivery of breast cancer care, populations at risk, and recommendations for the advancement of health equity in the Canadian cancer system. [ABSTRACT FROM AUTHOR]

Background: Minors who sell sex are likely to have complex mental health needs that may persist into adulthood. This topic is understudied in sub-Saharan Africa. This study hypothesized that adult female sex workers in Eswatini who started selling sex as minors have a higher prevalence of depression than those who started as adults. We also examined correlates of depression and underage initiation of selling sex, including stigma and condom-related behaviors. Methods: From October-December 2014, women aged 18 or older who sold sex in the past 12 months in Eswatini were recruited through venue-based sampling. Participants completed a survey including the 9-item Patient Health Questionnaire (PHQ-9) and a question about the age at which they first sold sex for money. T-tests, χ2 tests and multivariable logistic regression were used to assess associations. Results: Overall, 43.1% of participants (332/770) had probable depression, and 16.6% (128/770) started selling sex as minors under the age of 18. Over half (55.5%, 71/128) of those who started selling sex as minors had depression. This was significantly higher than the 40.7% (261/642) prevalence of depression among participants who started selling sex as adults (p = 0.002). After adjusting for confounders, female sex workers who started selling sex as minors had higher odds of depression than those who started as adults (adjusted odds ratio [aOR] 1.70, 95% confidence interval 1.11-2.60). Conclusion: Results highlight the need for trauma-informed and adolescentfriendly mental health services in settings free of stigma toward female sex workers in Eswatini. [ABSTRACT FROM AUTHOR]

Objectives: To evaluate the experienced barriers of care for treatment-seeking trans individuals (TSTG) in three large European clinics. Methods: An online follow-up questionnaire was filled out by 307 TSTG individuals as part of the research protocol of the European Network for the Investigation of Gender Incongruence (ENIGI). Data was collected during follow-up in 2017/2018, around 5 years after participants had their initial clinical appointments in Ghent (Belgium), Amsterdam (the Netherlands), or Hamburg (Germany). Background characteristics, country, treatment characteristics and mental health were analyzed in relation to experienced barriers of care (EBOC, measured though agreement with statements). Results: The majority of participants reported various EBOC, oftentimes more than one. The most-frequently reported EBOCs pertained to the lack of family and friends' support (28.7%, n = 88) and travel time and costs (27.7%, n = 85), whereas around one-fifth felt hindered by treatment protocols. Also, a significant share expressed the feeling that they had to convince their provider they needed care and/or express their wish in such way to increase their likelihood of receiving care. A higher number of EBOCs reported was associated with more mental health problems, lower income and female gender. Conclusions: A substantial number of TSTG individuals within three European health care systems experiences EBOCs. EBOCs relate to both personal and systemic characteristics. These findings can help health care providers and centers to improve care. More research must be done to better understand the diversity among TSTG individuals and the corresponding barriers experienced. Supplemental data for this article is available online at https://doi.org/10.1080/26895269.2021.1964409 [ABSTRACT FROM AUTHOR]

Engaging people living with HIV who report substance use (PLWH-SU) in care is essential to HIV medical management and prevention of new HIV infections. Factors associated with poor engagement in HIV care include a combination of syndemic psychosocial factors, mental and physical comorbidities, and structural barriers to healthcare utilization. Patient navigation (PN) is designed to reduce barriers to care, but its effectiveness among PLWH-SU remains unclear. We analyzed data from NIDA Clinical Trials Network's CTN-0049, a three-arm randomized controlled trial testing the effect of a 6-month PN with and without contingency management (CM), on engagement in HIV care and viral suppression among PLWH-SU (n = 801). Latent profile analysis was used to identify subgroups of individuals' experiences to 23 barriers to care. The effects of PN on engagement in care and viral suppression were compared across latent profiles. Three latent profiles of barriers to care were identified. The results revealed that PN interventions are likely to be most effective for PLWH-SU with fewer, less severe healthcare barriers. Special attention should be given to individuals with a history of abuse, intimate partner violence, and discrimination, as they may be less likely to benefit from PN alone and require additional interventions. [ABSTRACT FROM AUTHOR]

Abstract Background The concept of patient navigation was first established in the USA to support vulnerable patient groups in receiving timely and comprehensive access to cancer care. It has recently gained increasing interest in Germany to support patients with chronic diseases in a fragmented healthcare system. The aim of this paper is to present the development of such a model adapted to the German context based on the results of mixed-methods studies investigating the need for and barriers to patient-oriented care. Methods In a process adapted from Delphi rounds, we conducted regular structured workshops with investigators of the project to discuss results of their studies and identify content and structure of the model based on the data. Workshop discussions were structured along seven core components of a navigation model including target patient groups, navigator tasks, occupational background and education of navigators, and patient-navigator interaction mode. Results Using an approach based on empirical data of current care practices with special focus on patients’ perspectives, we developed a patient-oriented navigation model for patients who have experienced stroke and lung cancer in the German healthcare context. Patients without personal social support were viewed as struggling most with the healthcare system, as well as multimorbid and elderly patients. Navigators should serve as a longer-term contact person with a flexible contact mode and timing based on the individual situation and preferences of patients. Navigator tasks include the provision of administrative and organizational support as well as referral and guidance to available resources and beneficial health programs with special forms of knowledge. Implementation of the navigator should be flexibly located to ensure a reliable outreach to vulnerable patients for first contact in settings like specialized in-patient and out-patient settings, while navigation itself focuses on care coordination in the out-patient setting. Conclusion Flexibility of navigator tasks needed to be a core characteristic of a navigation model to be perceived as supportive from patients’ perspectives. In a subsequent feasibility study, an intervention based on the model will be evaluated according to its acceptance, demand, and practicality.

Background: Atrial fibrillation (AF) is the most common cardiac arrhythmia that affects 60 million people worldwide. Limited evidence on AF management exists from low- and middle-income countries and none from Sri Lanka. We aimed to investigate the existing AF care pathway and patients' perception on AF management to identify barriers and enablers for optimal AF care in Northern Province, Sri Lanka.Methods: A rapid evaluation was undertaken with use of qualitative methods. Local healthcare providers (HCPs) mapped the intended pathway of care for AF patients which was then explored and annotated through 12 iterative sessions with additional HCPs. Topics of inefficiencies identified from the finalised map were used to guide focus group discussions (FGDs) with AF patients. AF patients who were attending the anticoagulation clinic at the only tertiary hospital in Northern Province were recruited and invited to participate using purposive sampling. The topic guide was developed in collaboration with local clinicians and qualitative experts. FGDs were conducted in the native Tamil language and all sessions were recorded, transcribed verbatim and thematically analysed using a deductive approach.Results: The mapped pathway revealed inefficiencies in referral, diagnosis and ongoing management. These were explored through three FGDs conducted with 25 AF patients aged 25 to 70 years. Two key themes that contributed to and resulted in delays in accessing care and ongoing management were health seeking behaviours and atomistic healthcare structures. Four cross-cutting sub-themes identified were decision making, paternalistic approach to care, cost impacts and lifestyle impacts. These are discussed across 10 unique categories with consideration of the local context.Conclusions: Strengthening primary healthcare services, improving public health literacy regarding AF and building patient autonomy whilst understanding the importance of their daily life and family involvement may be advantageous in tackling the inefficiencies in the current AF care pathway in Sri Lanka. [ABSTRACT FROM AUTHOR]

Background Little is known about healthcare-seeking behaviour and barriers to care for cardiovascular disease (CVD) in sub-Saharan Africa. Methods Emergency department patients in Tanzania with acute CVD were prospectively enrolled. Questionnaires were administered at enrollment and 30 d later. Results Of 241 patients, 186 (77.2%) had visited another facility for the same illness episode (median symptom duration prior to presentation was 7 d) and 82 (34.0%) reported that they were initially unaware of the potential seriousness of their symptoms. Of the 208 (86.3%) patients completing follow-up, 16 (7.7%) had died, 38 (18.3%) had visited another facility for persistent symptoms, 99 (47.6%) felt they understood their diagnosis, 87 (41.8%) felt they understood their treatment and 11 (7.8%) could identify any of their medications. Predictors of 30 d survival with symptom improvement included medication compliance (p<0.001), understanding the diagnosis (p=0.007), understanding the treatment (p<0.001) and greater CVD knowledge (p=0.008). Conclusions Patients with CVD in Tanzania usually visit multiple facilities for the same illness episode, typically after prolonged delays. Only a minority understand their diagnosis and treatment, and such understanding is correlated with survival with symptom improvement. Patient-centred interventions are needed to improve the quality of cardiovascular care in Tanzania. [ABSTRACT FROM AUTHOR]

Background: Approximately 25% of all neonatal deaths worldwide occur in India. The Indian Government has established Special Neonatal Care Units (SNCUs) in district and sub-district level hospitals to reduce neonatal mortality, but mortality rates have stagnated. Reasons include lack of personnel and training and sub-optimal quality of care. The role of medical equipment is critical for the care of babies, but its role in improving neonatal outcomes has not been well studied. Methods: In a qualitative study, we conducted seven focus group discussions with SNCU nurses and pediatric residents and thirty-five key informant interviews and with pediatricians, residents, nurses, annual equipment maintenance contractors, equipment manufacturers, and Ministry of Health personnel in Maharashtra between December 2019 and November 2020. The goal of the study was to understand challenges to SNCU care. In this paper, we focus on current gaps and future needs for SNCU equipment, quality of the power supply, and use of SNCU equipment. Results: Respondents described a range of issues but highlighted poor power quality as an important cause of equipment malfunction. Other concerns were lack of timely repair that resulted in needed equipment being unavailable for neonatal care. Participants recommended procuring uninterrupted power supply (UPS) to protect equipment, improving quality/durability of equipment to withstand constant use, ensuring regular proactive maintenance for SNCU equipment, and conducting local power audits to discern and address the causes of power fluctuations. Conclusions: Poor power quality and its negative impact on equipment function are major unaddressed concerns of those responsible for the care and safety of babies in SNCUs in Central India. Further research on the power supply and protection of neonatal equipment is needed to determine a cost-effective way to improve access to supportive care in SNCUs and desired improvements in neonatal mortality rates.

Background: Medication adherence in chronic obstructive pulmonary disease (COPD) is low, though not enough is known about the factors that affect adherence in COPD. This study uses qualitative methods to understand the patient perspective on facilitators and barriers to medication adherence in COPD as well as patient-reported strategies for self-management of disease.Methods: Semi-structured interviews were conducted with 30 individuals (n = 30). Transcripts were analyzed using iterative qualitative coding by 2 independent coders, and codes were categorized using thematic analysis.Results: Challenges with adherence reported were gaps in understanding, forgetfulness of the patient, physician availability, cost navigation, and overcoming substance use. Most commonly, the financial burden of COPD medications caused patients to source other countries to obtain medications, rely on sample medications collected during doctors' visits, and to alter medication dosage and frequency to extend the length of a prescription. Tools and resources reported by patients to support self-management of COPD included pharmacist assistance, physician office information, and community resources. Individuals further reported that the use of logs or diaries to track medication usage, visual or temporal cues to take medications, and support from family members were helpful in promoting adherence to their COPD medication regimen.Conclusions: Medication adherence in individuals with COPD is affected by challenges with self-management of disease and financial burden of medications. However, patients reported multiple tools and resources to support adherence. Physician recognition of these factors impacting self-management, as well as awareness of strategies to promote adherence and manage disease, may improve patient outcomes. [ABSTRACT FROM AUTHOR]

Surgical healthcare in South Africa is inequitable with a considerable lack of resources in the public health sector. Identifying barriers to care and creating research priorities to mitigate these barriers can contribute to strategic interventions to improve equitable access to quality surgical care. To use the Four Delays Framework to map barriers to surgical care and identify priorities to achieve equitable and timely access to quality surgical care in South Africa. A multi-disciplinary stakeholder workshop was held in Cape Town, South Africa in January 2020. A Four Delays Framework (delays in seeking care, reaching care, receiving care, and remaining in care) was used to identify barriers that occur at each delay and the top 10 priorities for intervention. Barriers were categorised into overarching themes and schematically mapped. Thirty-four stakeholders including health service users, health service providers, and community members participated in this exercise. In total, 34 barriers were identified with 73 connections to various delays. Specifically, 14 barriers were related to delays in seeking care, 11 were related to delays in reaching care, 20 were related to delays in receiving care, and 28 were related to delays in remaining in care. The highest priority barriers across the delays were Lack of service provider's knowledge, training and experience, and Limited surgical outreach. The barrier Lack of decentralised services was related to all four delays. Barriers were interconnected and potentially reinforcing. This workshop is the first of its kind to generate evidence on the delays to surgical care in South Africa. Mapping crucial interconnected, potentially reinforcing barriers, and priority interventions demonstrated how a multifaceted approach may be required to address delays to access. Further research focused on the identified priorities will contribute to efforts to promote equitable access to quality surgical care in South Africa. [ABSTRACT FROM AUTHOR]

Background: Adolescents may forego needed sexual and reproductive health (SRH) services due to a variety of concerns and barriers. The purpose of this study is to compare adolescents' perceptions of these barriers by participant characteristics including race/ethnicity, gender, sexual orientation, housing situation, and sexual experience.Methods: Adolescents in a California-wide sexual health education program completed an anonymous survey at baseline (N = 10,015) about perceived barriers to using SRH services. Logistic regression analyses that accounted for the clustered data structure assessed differences by gender, age, sexual orientation, race/ethnicity, living situation, and sexual experience.Results: The majority of participants were Hispanic/Latino (76.4%) with an average age of 14.9 years, and 28.8% had sexual experience. Half of the youth reported concerns about test results (52.7%), cost of services (52.0%), and confidentiality of services (49.8%). When controlling for other characteristics, youth identifying as transgender/non-binary/multiple genders had the highest odds of perceiving cost (odds ratio (OR) 1.89) and confidentiality (OR 1.51) as barriers. Increasing age was associated with decreasing odds of all barriers. Sexual orientation was a consistent predictor, with LGBQ+ youth having higher odds of perceiving test results (OR 1.21), cost (OR 1.36), and confidentiality (OR 1.24) as barriers. Asian or Pacific Islander/Native Hawaiian youth had higher odds of perceiving test results (OR 1.68) and cost (OR 1.37) as barriers. In contrast, Black youth had lower odds of reporting cost (OR 0.65) and confidentiality (OR 0.77) as barriers. Younger respondents and youth who identified as female, transgender/non-binary/multiple genders, LGBQ+, and Asian or Pacific Islander/Native Hawaiian had higher odds of reporting five or more barriers compared to reference groups.Conclusions: The majority of adolescents face barriers to accessing appropriate SRH services, with females, gender-minority youth, younger adolescents, LGBQ+ youth, and Asian and Pacific Islander/Native Hawaiian youth more likely than others to report barriers. Access to SRH services can be improved through strengthening linkages between clinics and SRH education programs, providing youth-friendly clinical services, and ensuring youth have sufficient information, skills, and support to access care.Trial Registration: Approved by California Health and Human Services Agency's Committee for the Protection of Human Subjects [12-08-0658, 11/30/2017]. [ABSTRACT FROM AUTHOR]

Purpose: Standard of care for definitive treatment of locally advanced cervical cancer (LACC) is concurrent chemoradiation followed by a brachytherapy boost. Only 55.8% of women in the United States receive brachytherapy, with even lower proportions in San Diego and Imperial Counties. The purpose of this study was to investigate brachytherapy practice and referral patterns in Western United States border region. Material and methods: A short survey was sent to 28 radiation oncologists in San Diego and Imperial Counties, who treat patients with gynecologic malignancies. Descriptive statistics were used for analysis. Results: Seventeen (61%) physicians responded to the survey. All physicians reported some training in cervical cancer brachytherapy during residency, with median 6 months. Only two physicians reported personally treating all cervical cancer patients with brachytherapy; however, 92% of remaining physicians would recommend brachytherapy for patients if given time and access. The most common reason for referral (78%) was patients deemed to require hybrid or interstitial brachytherapy implants. Barriers to referral included patients' preference, insurance status, their resources, or logistics. No changes were reported for brachytherapy practices during the COVID-19 pandemic, except the addition of pre-procedural testing for SARS-CoV-2. Ninety-two percent of physicians identified inadequate maintenance of skills as a barrier to performing brachytherapy, but 77% were not interested in additional training. External beam radiation therapy boosts were rarely recommended in case scenarios describing potentially curable patients. Conclusions: The importance of brachytherapy is widely recognized for conferring a survival benefit, but barriers to implementation include inadequate training or maintenance of skills, and larger systematic issues related to reimbursement policy, social support, and financial hardship. As most established providers were uninterested in additional brachytherapy training, future approaches to improve patients' access should be multidimensional and reflect the value of brachytherapy in definitive treatment of patients with LACC. [ABSTRACT FROM AUTHOR]

Migraine affects over 40 million Americans and is the world's second most disabling condition. As the majority of medical care for migraine occurs in primary care settings, not in neurology nor headache subspecialty practices, healthcare system interventions should focus on primary care. Though there is grade A evidence for behavioral treatment (e.g., biofeedback, cognitive behavioral therapy (CBT), and relaxation techniques) for migraine, these treatments are underutilized. Behavioral treatments may be a valuable alternative to opioids, which remain widely used for migraine, despite the US opioid epidemic and guidelines that recommend against them. Identifying and removing barriers to the use of headache behavioral therapy could help reduce the disability as well as the personal and social costs of migraine. These techniques will have their greatest impact if offered in primary care settings to the lower socioeconomic status groups at greatest risk for migraine. We review the societal and cultural challenges that impose barriers to optimal use of non-pharmacological treatment services. These barriers include insufficient knowledge of migraine/headache behavioral treatments and insufficient availability of clinicians trained in non-pharmacological treatment delivery; limited access in underserved communities; financial burden; and stigma associated with both headache and mental health diagnoses and treatment. For each barrier, we discuss potential approaches to minimizing its effect and thus enhancing non-pharmacological treatment utilization. Case Example A 25-year-old graduate student with a prior history of headaches in college is attending school in the evenings while working a full-time job. Now, his headaches have significant nausea and photophobia. They are twice weekly and are disabling enough that he is unable to complete homework assignments. He does not understand why the headaches occur on Saturdays when he pushes through all week to get through his examinations that take place on Friday evenings. He tried two different migraine preventive medications, but neither led to the 50% reduction in headache days his doctor had hoped for. His doctor had suggested cognitive behavioral therapy (CBT) before initiating the medications, but he had been too busy to attend the appointments, and the challenges in finding an in-network provider proved difficult. Now with the worsening headaches, he opted for the CBT and by the fifth week had already noted improvements in his headache frequency and intensity. [ABSTRACT FROM AUTHOR]

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With a recent surge in older adult populations worldwide (i.e., composed of individuals aged 65 years and older), disparities in mental healthcare delivery and access are increasingly apparent. An analysis of the literature on service provision for individuals experiencing mental health issues shows that older adults are ubiquitously underrepresented and underserved. Older adults who require resources frequently fall through the cracks of family healthcare and community mental health centres. Older adults underutilizing mental health resources is likely due to a myriad of barriers to perceiving a need for care and to accessing care once a need is acknowledged. This critical review explores how physical and psychological barriers are distinct and how they lead to adverse outcomes for older adults through physical and social isolation and internalized ageism stigma. Proposed steps to mitigating challenges to accessing mental healthcare are discussed, including increasing availability of specialized geriatric care providers, establishing healthy and diverse community support networks with more physically accessible community programs, and increasing integration of medical and mental healthcare. [ABSTRACT FROM AUTHOR]

Objectives: To identify social and structural barriers to timely utilisation of qualified providers among children under five years in a high‐mortality setting, rural Mali and to analyse how utilisation varies by symptom manifestation. Methods: Using baseline household survey data from a cluster‐randomised trial, we assessed symptom patterns and healthcare trajectories of 5117 children whose mothers reported fever, diarrhoea, bloody stools, cough and/or fast breathing in the preceding two weeks. We examine associations between socio‐demographic factors, symptoms and utilisation outcomes in mixed‐effect logistic regressions. Results: Almost half of recently ill children reported multiple symptoms (46.2%). Over half (55.9%) received any treatment, while less than one‐quarter (21.7%) received care from a doctor, nurse, midwife, trained community health worker or pharmacist within 24 h of symptom onset. Distance to primary health facility, household wealth and maternal education were consistently associated with better utilisation outcomes. While children with potentially more severe symptoms such as fever and cough with fast breathing or diarrhoea with bloody stools were more likely to receive any care, they were no more likely than children with fever to receive timely care with a qualified provider. Conclusions: Even distances as short as 2–5 km significantly reduced children's likelihood of utilising healthcare relative to those within 2 km of a facility. While children with symptoms indicative of pneumonia and malaria were more likely to receive any care, suggesting mothers and caregivers recognised potentially severe illness, multiple barriers to care contributed to delays and low utilisation of qualified providers, illustrating the need for improved consideration of barriers. [ABSTRACT FROM AUTHOR]

Background: Social innovation has been applied increasingly to achieve social goals, including improved healthcare delivery, despite a lack of conceptual clarity and consensus on its definition. Beyond its tangible artefacts to address societal and structural needs, social innovation can best be understood as innovation in social relations, in power dynamics and in governance transformations, and may include institutional and systems transformations. Methods: A scoping review was conducted of empirical studies published in the past 10 years, to identify how social innovation in healthcare has been applied, the enablers and barriers affecting its operation, and gaps in the current literature. A number of disciplinary databases were searched between April and June 2020, including Academic Source Complete, CIHAHL, Business Source Complete Psych INFO, PubMed and Global Health. A 10-year publication time frame was selected and articles limited to English text. Studies for final inclusion was based on a pre-defined criteria. Results: Of the 27 studies included in this review, the majority adopted a case research methodology. Half of these were from authors outside the health sector working in high-income countries (HIC). Social innovation was seen to provide creative solutions to address barriers associated with access and cost of care in both low- and middle-income countries and HIC settings in a variety of disease focus areas. Compared to studies in other disciplines, health researchers applied social innovation mainly from an instrumental and technocratic standpoint to foster greater patient and beneficiary participation in health programmes. No empirical evidence was presented on whether this process leads to empowerment, and social innovation was not presented as transformative. The studies provided practical insights on how implementing social innovation in health systems and practice can be enhanced. Conclusions: Based on theoretical literature, social innovation has the potential to mobilise institutional and systems change, yet research in health has not yet fully explored this dimension. Thus far, social innovation has been applied to extend population and financial coverage, principles inherent in universal health coverage and central to SDG 3.8. However, limitations exist in conceptualising social innovation and applying its theoretical and multidisciplinary underpinnings in health research. [ABSTRACT FROM AUTHOR]

Background: Grenada is a small, resource‐limited Caribbean country with a high incidence of sickle cell disease (SCD). Since little is known about the challenges facing individuals living with SCD in the West Indies, we sought to assess barriers to healthcare and the impact of SCD on quality of life in Grenada. Methods: Both adults aged 18+ (n = 19) and caregivers of children aged 2–17 (n = 26) completed validated survey measures regarding barriers to care and quality of life, along with a genetics knowledge questionnaire. Caregivers also completed a caregiver burden scale. Survey scores were calculated, and responses were analyzed for an association between demographic variables. Results: The Barriers to Care Questionnaire, in which lower scores indicate more barriers, revealed that both adults (mean = 69.9) and children (mean = 75.5) with SCD experienced reduced access to care. The Adult Sickle Cell Quality of Life Measurement Information System indicated increased depression and loneliness in adults, with the lowest scores in the Emotional subscale. However, the Pediatric Quality of Life Inventory answered by caregivers of children with SCD showed the lowest scores in the Physical Functioning subscale. Further analysis using the Caregiver Burden Scale‐Zarit Burden Interview revealed that 53.8% of caregivers of children with SCD indicated "little to no burden," which may reflect a difference in cultural expectations of a caregiver between high‐income countries and Grenada. Finally, ~80% of respondents knew that SCD was a genetic condition; however, 61%–84% could not correctly indicate recurrence risks, demonstrating a need for additional education. Conclusion: These data provide new insights regarding the experience of living with SCD in Grenada and support the need for further investigations into specific barriers to healthcare delivery, which could also improve education and well‐being for those affected by SCD in Grenada and in the broader Caribbean community. [ABSTRACT FROM AUTHOR]