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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]

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]