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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]

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]

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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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]