Abstract:
:Rare diseases face serious sustainability challenges regarding the distribution of resources geared at health and social needs. Our aim was to describe the barriers experienced by parents of children with Rett Syndrome for accessing care resources. A qualitative case study was conducted among 31 parents of children with Rett syndrome. Data were collected through in-depth interviews, focus groups, researchers' field notes and parents' personal documents. A thematic analysis was performed and the Standards for Reporting Qualitative Research (SRQR) guidelines were followed. Three main themes emerged from the data: (a) essential health resources; (b) bureaucracy and social care; and (c) time management constraints. Parents have difficulties accessing appropriate health services for their children. Administrative obstacles exist for accessing public health services, forcing parents to bear the financial cost of specialized care. Time is an essential factor, which conditions the organization of activities for the entire family. Qualitative research offers insight into how parents of children with Rett syndrome experience access to resources and may help improve understanding of how Rett syndrome impacts the lives of both the children and their parents.
journal_name
Int J Environ Res Public Healthauthors
Güeita-Rodriguez J,Famoso-Pérez P,Salom-Moreno J,Carrasco-Garrido P,Pérez-Corrales J,Palacios-Ceña Ddoi
10.3390/ijerph17124466subject
Has Abstractpub_date
2020-06-21 00:00:00issue
12eissn
1661-7827issn
1660-4601pii
ijerph17124466journal_volume
17pub_type
杂志文章abstract::The objectives of this study were to evaluate the effect of gender and postures of the neck, trunk, and knee on overall postural discomfort, and to classify combined postures into different postural discomfort groups. A total of 95 participants (42 males and 53 females) performed 45 different static postures, which we...
journal_title:International journal of environmental research and public health
pub_type: 杂志文章
doi:10.3390/ijerph17228314
更新日期:2020-11-10 00:00:00
abstract::In response to the emergent public health event of COVID-19, the efficiency of transport of medical waste from hospitals to disposal stations is a worthwhile issue to study. In this paper, based on the actual situation of COVID-19 and environmental impact assessment guidelines, an immune algorithm is used to establish...
journal_title:International journal of environmental research and public health
pub_type: 杂志文章
doi:10.3390/ijerph17165831
更新日期:2020-08-12 00:00:00
abstract::This paper is an extension of the work originally presented in the 16th International Conference on Wearable, Micro and Nano Technologies for Personalized Health. Despite using electronic medical records, free narrative text is still widely used for medical records. To make data from texts available for decision suppo...
journal_title:International journal of environmental research and public health
pub_type: 杂志文章
doi:10.3390/ijerph16224360
更新日期:2019-11-08 00:00:00
abstract:BACKGROUND:Our understanding of gambling relapse is limited despite the damaging consequences affecting many aspects of the gambler's life. Paradoxically, regardless of these negative consequences problem gamblers (PGs) continue to relapse, seemingly unable to stop this cycle of harm. This paper addresses the phenomeno...
journal_title:International journal of environmental research and public health
pub_type: 杂志文章
doi:10.3390/ijerph16162858
更新日期:2019-08-10 00:00:00
abstract::Visually impaired people have difficulty accessing information about public transportation systems. Several systems have been developed for assisting visually impaired and blind people to use the city bus. Most systems provide only one-way communication and require high-cost and complex equipment. The purpose of this ...
journal_title:International journal of environmental research and public health
pub_type: 杂志文章
doi:10.3390/ijerph110504560
更新日期:2014-04-25 00:00:00
abstract::The primary aim of this study was to describe the prevalence of childhood overweight and obesity in Liverpool between 2006 and 2012. A secondary aim was to examine the extent to which socioeconomic inequalities relating to childhood overweight and obesity in Liverpool changed during this six-year period. A sample of 5...
journal_title:International journal of environmental research and public health
pub_type: 杂志文章
doi:10.3390/ijerph15122612
更新日期:2018-11-22 00:00:00
abstract::There exist some fuzziness and uncertainty in the process of ecological construction. The aim of this paper is to develop a direct and an effective simplified method for obtaining the cost-sharing scheme when some interested parties form a cooperative coalition to improve the ecological environment of Min River togeth...
journal_title:International journal of environmental research and public health
pub_type: 杂志文章
doi:10.3390/ijerph13111102
更新日期:2016-11-08 00:00:00
abstract::Nurses experience significant stress and emotional exhaustion, leading to burnout and fatigue. This study assessed how the nurses' mood and fatigue evolves during their shifts, and the temporal factors that influence these phenomena. Performing a two-level design with repeated measures with moments nested into a perso...
journal_title:International journal of environmental research and public health
pub_type: 杂志文章
doi:10.3390/ijerph17197277
更新日期:2020-10-05 00:00:00
abstract::This research examined the ethnic differences in domestic recovery after the 2008 Wenchuan Earthquake in China. In 2014, 866 valid questionnaires were collected. Han and Qiang & Zang households were analyzed using logistic regression to determine the factors influencing household recovery. It was found that the househ...
journal_title:International journal of environmental research and public health
pub_type: 杂志文章
doi:10.3390/ijerph14060590
更新日期:2017-06-02 00:00:00
abstract::Driven by the high social costs and emotional trauma that result from traffic accidents around the world, research into understanding the factors that influence accident occurrence is critical. There is a lack of consensus about how the management of congestion may affect traffic accidents. This paper aims to improve ...
journal_title:International journal of environmental research and public health
pub_type: 杂志文章
doi:10.3390/ijerph17041393
更新日期:2020-02-21 00:00:00
abstract::The FIBA Basketball World Cup is one of the most prominent sporting competitions for men's basketball, with coaches interested in key performance indicators (KPIs) that give a better understanding of basketball competitions. The aims of the study were to (1) examine the relationship between match KPIs and outcome in e...
journal_title:International journal of environmental research and public health
pub_type: 杂志文章
doi:10.3390/ijerph17165722
更新日期:2020-08-07 00:00:00
abstract::Nongovernmental organizations (NGOs) are being integrated into U.S. strategies to expand the services that are available during health security threats like disasters. Identifying better ways to classify NGOs and their services could optimize disaster planning. We surveyed NGOs about the types of services they provide...
journal_title:International journal of environmental research and public health
pub_type: 杂志文章
doi:10.3390/ijerph14111423
更新日期:2017-11-21 00:00:00
abstract::Chronotype reflects an individual's preferred time of the day for an activity/rest cycle and individuals can be classified as a morning, intermediate, or evening type. A growing number of studies have examined the relationship between chronotype and general health. This review aimed to map current evidence of the asso...
journal_title:International journal of environmental research and public health
pub_type: 杂志文章,评审
doi:10.3390/ijerph17010068
更新日期:2019-12-20 00:00:00
abstract::Background: Older adults in rural areas have unique transportation barriers to accessing medical care, which include a lack of mass transit options and considerable distances to health-related services. This study contrasts non-emergency medical transportation (NEMT) service utilization patterns and associated costs f...
journal_title:International journal of environmental research and public health
pub_type: 杂志文章
doi:10.3390/ijerph14020174
更新日期:2017-02-10 00:00:00
abstract::We investigated the association between head computed tomography (CT) scans and the risk of noncancer thyroid diseases in patients with minor head injury in a Taiwanese healthcare setting. For this retrospective population-based cohort study, the 2009-2013 Longitudinal Health Insurance Database was used to include pat...
journal_title:International journal of environmental research and public health
pub_type: 杂志文章
doi:10.3390/ijerph17113873
更新日期:2020-05-29 00:00:00
abstract::Background: The stigma of mental illness causes delays in seeking help, and often compromises victims' therapeutic relationships with healthcare providers. The knowledge, attitudes, and behavioural responses of future healthcare professionals toward individuals with mental illnesses are explored here to suggest steps ...
journal_title:International journal of environmental research and public health
pub_type: 杂志文章
doi:10.3390/ijerph17010025
更新日期:2019-12-18 00:00:00
abstract::The increasing worldwide use of paediatric computed tomography (CT) has led to increasing concerns regarding the subsequent effects of exposure to radiation. In response to this concern, the international EPI-CT project was developed to study the risk of cancer in a large multi-country cohort. In radiation epidemiolog...
journal_title:International journal of environmental research and public health
pub_type: 杂志文章
doi:10.3390/ijerph10020717
更新日期:2013-02-18 00:00:00
abstract::The increase in human immunodeficiency virus (HIV) transmission cases poses a serious public health concern. Although several previous studies have been conducted with the aim of identifying the risk factors for HIV transmission, the number of cases has been increasing, especially in youth. The present study is aimed ...
journal_title:International journal of environmental research and public health
pub_type: 杂志文章
doi:10.3390/ijerph17228332
更新日期:2020-11-11 00:00:00
abstract::Reservoir sediments act as important receivers and sources for nutrients in the overlaying water. To determine the sediments adsorption and release characteristics and their impacts on water quality, surface sediments samples collected from Biliuhe reservoir in August 2015 were studied through simulation experiments i...
journal_title:International journal of environmental research and public health
pub_type: 杂志文章
doi:10.3390/ijerph16183303
更新日期:2019-09-08 00:00:00
abstract:BACKGROUND:In this paper, we aimed to investigate the potential impacts of a fire accident in a fertilizer warehouse on chromosomal anomalies, including Trisomy 21 (T21) and Trisomy (T18) among pregnancies in Brazos County, Texas. We conducted an observational study in Brazos County, TX, with all patients of T18 and T2...
journal_title:International journal of environmental research and public health
pub_type: 杂志文章
doi:10.3390/ijerph17072561
更新日期:2020-04-08 00:00:00
abstract::Legionnaires' disease is normally acquired by inhalation of legionellae from a contaminated environmental source. Water systems of large and old buildings, such as hospitals, can be contaminated with legionellae and therefore represent a potential risk for the hospital population. In this study, we demonstrated the co...
journal_title:International journal of environmental research and public health
pub_type: 杂志文章
doi:10.3390/ijerph16071103
更新日期:2019-03-28 00:00:00
abstract::Heavy metal contamination is currently a major environmental concern, as most agricultural land is being polluted from municipal discharge. Among various other pollutants, cadmium (Cd), one of the most harmful heavy metals, enters into the food chain through the irrigation of crops with an industrial effluent. In the ...
journal_title:International journal of environmental research and public health
pub_type: 杂志文章
doi:10.3390/ijerph17113850
更新日期:2020-05-29 00:00:00
abstract::The role of nutritional factors in arsenic metabolism and toxicity is yet to be fully elucidated. A low protein diet results in decreased excretion of DMA and increased tissue retention of arsenic in experimental studies. Malnourished women carry a higher risk of adverse pregnancy outcomes. Chronic exposure to high ar...
journal_title:International journal of environmental research and public health
pub_type: 杂志文章
doi:10.3390/ijerph7072811
更新日期:2010-07-01 00:00:00
abstract::Hygienic fecal treatment in resource-oriented sanitation (ROS) systems is an important concern. Although the addition of nitrifying microorganisms is a sustainable fecal treatment method in ROS systems, it is essential to examine the cleanliness of this method. In this study, we investigated the fate of fecal indicato...
journal_title:International journal of environmental research and public health
pub_type: 杂志文章
doi:10.3390/ijerph15010164
更新日期:2018-01-20 00:00:00
abstract::This paper explores wellbeing from the perspective of the psychological dynamics underlying adolescents' relationship with place. It uses a dynamic model of wellbeing called personal project analysis (PPA) which captures the concept of 'flourishing', defined as functioning well in your activities, strivings and intera...
journal_title:International journal of environmental research and public health
pub_type: 杂志文章
doi:10.3390/ijerph9093227
更新日期:2012-09-05 00:00:00
abstract::Numerous studies have established that participation in regular physical activity provides physical, cognitive, and affective benefits to adolescents, but fewer studies have examined how athletic involvement might affect character, social, or religious developmental markers of psychosocial functioning. The purpose of ...
journal_title:International journal of environmental research and public health
pub_type: 杂志文章
doi:10.3390/ijerph17030686
更新日期:2020-01-21 00:00:00
abstract::Background: A machine learning (ML) system is able to construct algorithms to continue improving predictions and generate automated knowledge through data-driven predictors or decisions. Objective: The purpose of this study was to compare six ML methods (random forest (RF), logistics regression, linear support vector ...
journal_title:International journal of environmental research and public health
pub_type: 杂志文章
doi:10.3390/ijerph17176234
更新日期:2020-08-27 00:00:00
abstract::This study presents an assessment of the participation and training of nurses in public health areas in the Americas. Information was gathered through a literature review and interviews with key informants from Mexico, Colombia, and Paraguay. Results demonstrate that there is significant variation in definitions of pu...
journal_title:International journal of environmental research and public health
pub_type: 杂志文章,评审
doi:10.3390/ijerph7030729
更新日期:2010-03-01 00:00:00
abstract::Overcoming the impact of the coronavirus pandemic (COVID-19) on primary schools is an emerging need and priority in the current social welfare system. Accordingly, this study presents an empirical learning package to support teachers, who perform frontline work in schools, in coping with stress, preventing burnout, im...
journal_title:International journal of environmental research and public health
pub_type: 杂志文章
doi:10.3390/ijerph17228633
更新日期:2020-11-20 00:00:00
abstract::In this paper, we consider a variant of the location-routing problem (LRP), namely the the multiobjective regional low-carbon LRP (MORLCLRP). The MORLCLRP seeks to minimize service duration, client waiting time, and total costs, which includes carbon emission costs and total depot, vehicle, and travelling costs with r...
journal_title:International journal of environmental research and public health
pub_type: 杂志文章,评审
doi:10.3390/ijerph16112064
更新日期:2019-06-11 00:00:00