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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]

Accessible summary • A lot of people worry about going to the dentist. • Sometimes people aren’t given a choice about the treatment they have at the dentist. • We worked with somebody to help them feel better about going to the dentist. • People can copy our work to help other people feel better going to the dentist. Dental anxiety is a common form of anxiety problem, and research suggests that more people with learning disabilities experience dental anxiety than in the general population. Very little work has been done to investigate effective non-medical approaches for supporting people with a learning disability and dental anxiety to access dental care. This has created a significant barrier to accessing treatment, and meant that individual’s are not offered a meaningful choice between treatment options. Using a case study, this paper demonstrates that a simple cognitive behavioural intervention can be effective in reducing dental anxiety, and offer a more meaningful choice of treatment options. This paper is limited in that no formal assessment measures were used, and was evaluated through client feedback. It is possible that this intervention could be applied by other practitioners to increase the accessibility of dental health services. [ABSTRACT FROM AUTHOR]

Background: Nursing home quality of care is a persistent challenge, with recent reports calling for increased reforms to improve quality and safety. Less is known about the clinical approaches currently used and the barriers perceived by skilled nursing facilities (SNFs) to provide care for their short‐stay residents. Methods: We conducted a nationally representative survey of SNFs from October 2020 to May 2021 to understand their care delivery approaches and perceived barriers. Our primary outcomes were the reported number of 23 separate care delivery approaches and the reported number of 12 separate barriers to reduce spending or improve care for SNF short‐stay residents. We also performed stratified analyses by facility participation in bundled payments and other SNF characteristics. Results: We received 377 responses from 693 SNFs contacted (response rate = 54%). SNFs reported an average of 16.8 care delivery approaches and an average of 5.0 barriers. While there were some differences observed in SNF characteristics, such as by bundled payments participation or ownership type, there were common care delivery approaches and barriers shared by most facilities. Care management practices, including reviewing the patient census and medication reconciliation on discharge, were the most common delivery approaches reported. SNFs were less likely to ensure the completion of a follow‐up appointment with a primary care provider or track repeat emergency room visits. Issues concerning staffing, such as staff turnover and/or burnout, and lack of resources to provide patients social support, mental health, and substance use services, were the most cited barriers to care delivery. Conclusions: Nationally, SNFs implemented a wide array of care delivery approaches, but challenges with staffing and limited resources to address patients' social and mental health needs were dominant. Individual SNFs may have limited ability to address these key barriers, so the involvement of many stakeholders across the entire healthcare system may be necessary. [ABSTRACT FROM AUTHOR]

Background: Sensory over‐responsivity has been linked to oral care challenges in children with special healthcare needs. Parents of children with Down syndrome (cDS) have reported sensory over‐responsivity in their children, but the link between this and oral care difficulties has not been explored. Aim: To investigate the relationship between sensory over‐responsivity and oral care challenges in cDS. Design: An online survey examined parent‐reported responses describing the oral care of their cDS (5–14 years; n = 367). Children were categorized as either sensory over‐responders (SORs) or sensory not over‐responders (SNORs). Chi‐square analyses tested associations between groups (SORs vs. SNORs) and dichotomous oral care variables. Results: More parents of SOR children than of SNOR reported that child behavior (SOR:86%, SNOR:77%; p <.05) and sensory sensitivities (SOR:34%, SNOR:18%; p <.001) make dental care challenging, their child complains about ≥3 types of sensory stimuli encountered during care (SOR:39%, SNOR:28%; p =.04), their dentist is specialized in treating children with special healthcare needs (SOR:45%, SNOR:33%; p =.03), and their child requires full assistance to brush teeth (SOR:41%, SNOR:28%; p =.008). No intergroup differences were found in items examining parent‐reported child oral health or care access. Conclusions: Parents of SOR children reported greater challenges than parents of SNOR children at the dentist's office and in the home, including challenging behaviors and sensory sensitivities. [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: 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]

The COVID‐19 pandemic has forced an abrupt change in the delivery of clinical services, including for individuals with an eating disorder. We present this Virtual Issue as a resource for the eating disorder community to showcase research published in the International Journal of Eating Disorders that provides information on effective strategies to help address the challenges arising from COVID‐19‐related disruptions. Articles included describe original research or systematic reviews on obstacles to health services use and strategies to improve access to care; technological tools to provide or enhance interventions; patients' and clinicians' attitudes or perspectives on using digital tools for clinical care; factors influencing therapeutic alliance; and ideas for improving reach and uptake of digital interventions. We hope that readers will find ways to observe and record their own experiences during this global crisis; the experiences of people at risk for developing or exhibiting an eating disorder; and the experiences of those who care for people with an eating disorder. These lived experiences will be invaluable in formulating hypotheses for future studies in service of advancing the understanding of eating disorders and improving interventions and policies for reducing the burden of suffering attributable to eating disorders. [ABSTRACT FROM AUTHOR]

Objective: The current study evaluated perceived barriers to care for parents of children with cancer and the mediating effect of illness uncertainty (IU; uncertainty from the ambiguity or unpredictability of the illness) on the relationship between barriers and parental psychological distress. We hypothesized that greater barriers to care would be related to higher levels of IU and, in turn, higher anxiety, depression, and posttraumatic stress symptom (PTSS) ratings.Methods: As part of an ongoing study of family adjustment to pediatric cancer, 145 caregivers of children diagnosed with cancer completed questionnaires assessing barriers to care, parent IU, and anxious symptoms, depressive symptoms, and PTSS. Time since cancer diagnosis ranged from 1 to 12 months.Results: Three mediation models assessed IU as a mediator between barriers to care and anxious symptoms, depressive symptoms, and PTSS, controlling for annual income. IU significantly mediated the relationship between barriers to care and depressive symptoms (B = -.03, SE = .02; 95% CI [-.08, -.01]) and to PTSS (B = -.15, SE = .10; 95% CI [-.38, -.03]). The mediation model was not significant for anxious symptoms.Conclusion: Experiencing barriers to obtaining treatment for their child with cancer is a significant risk factor for symptoms of depression and PTSS among parents. Specifically, greater barriers to care is significantly associated with IU, a well-established precursor to distress in this population. Interventions targeting IU may help ameliorate distress within the context of unmodifiable barriers to care. [ABSTRACT FROM AUTHOR]

Context Very little population-based research has examined health and access to care among transgender populations. This study compared barriers to care between cisgender, transgender, and gender nonconforming (GNC) adults using data from a large, multistate sample. Methods We used data from the 2014-2015 Behavioral Risk Factor Surveillance System to estimate the prevalence of having no health insurance, unmet medical care needs due to cost, no routine checkup, and no usual source of care for cisgender women (n = 183,370), cisgender men (n = 131,080), transgender women (n = 724), transgender men (n = 449), and GNC adults (n = 270). Logistic regression models were used to estimate odds ratios (OR) and 95% confidence intervals (CI) for each barrier to care while adjusting for sociodemographic characteristics. Findings Transgender and GNC adults were more likely to be nonwhite, sexual minority, and socioeconomically disadvantaged compared to cisgender adults. After controlling for sociodemographic characteristics, transgender women were more likely to have no health insurance (OR = 1.60; 95% CI = 1.07-2.40) compared to cisgender women; transgender men were more likely to have no health insurance (OR = 2.02; 95% CI = 1.25-3.25) and no usual source of care (OR = 1.84; 95% CI = 1.18-2.88); and GNC adults were more likely to have unmet medical care needs due to cost (OR = 1.93; 95% CI = 1.02-3.67) and no routine checkup in the prior year (OR = 2.41; 95% CI = 1.41-4.12). Conclusions Transgender and GNC adults face barriers to health care that may be due to a variety of reasons, including discrimination in health care, health insurance policies, employment, and public policy or lack of awareness among health care providers on transgender-related health issues. [ABSTRACT FROM AUTHOR]

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AIM The Actionable Bladder Symptom and Screening Tool (ABSST) is used to identify multiple sclerosis (MS) patients in possible need of evaluation for urinary symptoms. The primary objective of this study was to identify barriers experienced by MS patients in seeking evaluation for urinary symptoms. We also assessed the utility of ABSST tool in identifying patients that will follow up with urologic evaluation. METHODS This was a prospective observational study where 100 patients with MS were enrolled from an MS center. Patients completed demographic information, questions to assess barriers to care, a short form of the ABSST, and incontinence questionnaires. An ABSST score >3 met criteria for referral and evaluation. One year after enrollment, follow up calls assessed whether patients had seen a urinary specialist. RESULTS The most common barriers to seeking care included 'Doctor never referred' (16%) and 'Doctor never asked' (13%). Thirty-eight percent ( n = 8/21) of men stated 'Doctor never referred' compared to 10% ( n = 8/79) of women ( P = 0.002). Twenty-seven patients had an ABSST Score ≥3 and were more interested in seeing a specialist compared to those scoring <3 (88.9%, n = 24/27 vs. 26%, n = 19/73; P = <0.001). After 1 year, 70 patients were reached for follow up. A total of 57.9% ( n = 11/19) patients who followed up for evaluation screened positive on the ABSST. CONCLUSIONS The ABSST is a valuable tool to identify MS patients with urinary symptoms who will likely follow up for genitourinary evaluation. However, other barriers beyond awareness exist and prevent patients from being evaluated. [ABSTRACT FROM AUTHOR]

Purpose Vision and hearing impairments are known to increase in middle age. In this study we describe the prevalence of vision impairment and dual sensory impairment in UK adults aged 40-69 years in a very large and recently ascertained data set. The associations between vision impairment, age, sex, socioeconomic status, and ethnicity are reported. Methods This research was conducted using the UK Biobank Resource, with subsets of UK Biobank data analysed with respect to self-report of eye problems and glasses use. Better-eye visual acuity with habitually worn refractive correction was assessed with a log MAR chart ( n = 116 682). Better-ear speech reception threshold was measured with an adaptive speech in noise test, the Digit Triplet Test ( n = 164 770). Prevalence estimates were weighted with respect to UK 2001 Census data. Results Prevalence of mild visual impairment ( VA >0.1 logMAR (6/7.5, 20/25) and ≥0.48 (6/18, 20/60)) and low vision ( VA >0.48 (6/18, 20/60) and ≥1.3 (6/120, 20/400)) was estimated at 13.1% (95% CI 12.9-13.4) and 0.8% (95% CI 0.7-0.9), respectively. Use of glasses was 88.0% (95% CI 87.9-88.1). The prevalence of dual sensory impairment was 3.1% (95% CI 3.0-3.2) and there was a nine-fold increase in the prevalence of dual sensory problems between the youngest and oldest age groups. Older adults, those from low socioeconomic and ethnic minority backgrounds were most at risk for vision problems. Conclusions Mild vision impairment is common in middle aged UK adults, despite widespread use of spectacles. Increased likelihood of vision impairment with older age and with ethnic minorities is of concern given ageing and more ethnically diverse populations. Possible barriers to optometric care for those from low socioeconomic and ethnic minority backgrounds may require attention. A higher than expected prevalence of dual impairment suggests that hearing and vision problems share common causes. Optometrists should consider screening for hearing problems, particularly among older adults. [ABSTRACT FROM AUTHOR]

Despite an increasing number of military service members in need of mental health treatment following deployment to Iraq and Afghanistan, numerous psychological and practical barriers limit access to care. Perceived stigma about admitting psychological difficulties as well as frequent long distances to treatment facilities reduce many veterans' willingness and ability to receive care. Telemedicine and virtual human technologies offer a unique potential to expand services to those in greatest need. Telemedicine-based treatment has been used to address multiple psychiatric disorders, including posttraumatic stress disorder, depression, and substance use, as well as to provide suicide risk assessment and intervention. Clinician education and training has also been enhanced and expanded through the use of distance technologies, with trainees practicing clinical skills with virtual patients and supervisors connecting with clinicians via videoconferencing. The use of these innovative and creative vehicles offers a significant and as yet unfulfilled promise to expand delivery of high-quality psychological therapies, regardless of clinician and patient location. [ABSTRACT FROM AUTHOR]

There is growing enthusiasm for community-academic partnerships to promote health in underserved communities. Drawing upon resources available at a comprehensive cancer center, we developed the ACCESS program to guide community based organizations through a flexible program planning process. Over a three-year period, ACCESS partnered with 67 agencies serving various medically underserved populations. Organizations included hospitals, parishes, senior centers, harm reduction programs, and recreational facilities. Program outcomes at the organizational level were quantified in terms of introduction of new cancer information, referral or screening programs, as well as organizational capacity building. ACCESS represents a viable model for promoting partnership to transfer behavioral health programs and adapt interventions for new audiences. Plans to further evaluate and enhance this model to promote cancer screening efforts are discussed. We argue that, ultimately, formation and development of community partnerships need to be understood as a fundamental area of practice that must be systematically integrated into the mission of major academic medical institutions in every area of public health. [ABSTRACT FROM AUTHOR]

Objective. To further understand barriers to care as experienced by health care consumers, and to demonstrate the importance of conjoining qualitative and quantitative health services research. Data Sources. Transcripts from focus groups conducted in San Diego with English- and Spanish-speaking parents of children with special health care needs. Study Design. Participants were asked about the barriers to care they had experienced or perceived, and their strategies for overcoming these barriers. Using elementary anthropological discourse analysis techniques, a process-based conceptual model of the parent experience was devised. Principal Findings. The analysis revealed a parent-motivated model of barriers to care that enriched our understanding of quantitative findings regarding the population from which the focus group sample was drawn. Parent-identified barriers were grouped into the following six temporally and spatially sequenced categories: necessary skills and prerequisites for gaining access to the system; realizing access once it is gained; front office experiences; interactions with physicians; system arbitrariness and fragmentation; outcomes that affect future interaction with the system. Key to the successful navigation of the system was parents' functional biomedical acculturation; this construct likens the biomedical health services system to a cultural system within which all parents/patients must learn to function competently. Conclusions. Qualitative analysis of focus group data enabled a deeper understanding of barriers to care—one that went beyond the traditional association of marker variables with poor outcomes (“what”) to reveal an understanding of the processes by which parents experience the health care system (“how,”“why”) and by which disparities may arise. Development of such process-oriented models furthers the provision of patient-centered care and the creation of interventions, programs, and curricula to enhance such care. Qualitative discourse analysis, for example using this project's widely applicable protocol for generating experientially based models, can enhance our knowledge of the parent/patient experience and aid in the development of more powerful conceptualizations of key health care constructs. [ABSTRACT FROM AUTHOR]

Objectives. To examine whether fiduciary trust in a physician is related to unmet health care needs and delayed care among patients who have a regular physician, and to investigate whether the relationships between trust and unmet health care needs and delays in care are attenuated for disadvantaged patients who face structural obstacles to obtaining health care. Data Sources/Study Setting. The 1998–1999 Community Tracking Study (CTS) Household Survey, a cross-sectional sample representative of the U.S. noninstitutionalized population. This study analyzes adults who usually see the same physician for their health care ( n=29,994). Study Design. We estimated logistic regression models of the association of trust with unmet health care needs and delayed care. We tested interactions between trust and barriers to obtaining care, including minority race/ethnicity, poverty, and the absence of health insurance. Control variables included patients' sociodemographic characteristics, health status, satisfaction with the available choice of primary physicians, and the number of physician visits during the last year. Principal Findings. Patients' fiduciary trust in a physician is negatively associated with the likelihood of reporting delayed care and unmet health care needs among most patients. Among African Americans, Hispanics, the poor, and the uninsured, however, fiduciary trust is not significantly associated with the likelihood of delayed care. For unmet needs, only the uninsured have no significant association with trust. Conclusions. Results show that trust is associated with improved chances of getting needed care across most subgroups of the population, although this relationship varies by subpopulation. [ABSTRACT FROM AUTHOR]