Artículos de revistas: "Healthcare Design for Children"

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Sims, Tara. "Participatory design of healthcare technology with children". International Journal of Health Care Quality Assurance 31, n.º 1 (12 de febrero de 2018): 20–27. http://dx.doi.org/10.1108/ijhcqa-11-2016-0162.

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Purpose There are many frameworks and methods for involving children in design research. Human-Computer Interaction provides rich methods for involving children when designing technologies. The paper aims to discuss these issues. Design/methodology/approach This paper examines various approaches to involving children in design, considering whether users view children as study objects or active participants. Findings The BRIDGE method is a sociocultural approach to product design that views children as active participants, enabling them to contribute to the design process as competent and resourceful partners. An example is provided, in which BRIDGE was successfully applied to developing upper limb prostheses with children. Originality/value Approaching design in this way can provide children with opportunities to develop social, academic and design skills and to develop autonomy.

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Allsop, Matthew J. y Raymond J. Holt. "Evaluating methods for engaging children in healthcare technology design". Health and Technology 3, n.º 4 (14 de julio de 2013): 295–307. http://dx.doi.org/10.1007/s12553-013-0062-7.

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Srinivas, Gunda. "Healthcare Innovation and Design Thinking". Karnataka Pediatric Journal 36 (6 de septiembre de 2021): 87–93. http://dx.doi.org/10.25259/kpj_14_2021.

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The objective of this article is to bring awareness to the changing landscape of the healthcare ecosystem and the clinician’s role with respect to medical devices, medical systems, technology, and processes involved in the system. Clinicians interact with them every day and have a huge implication for them directly, and to their patients indirectly. Clinicians are actively involved in clinical research which involves the knowledge and practice of the disease, diagnosis and management, etc. Recently, the role of non-clinical aspects such as medical devices, processes and systems of the healthcare ecosystem is gaining popularity. Hence, there is potential to explore this aspect of the healthcare delivery system to redesign and innovate for improving clinical outcomes. To achieve this, the clinicians need to understand these systems from a perspective that will help them to identify the problems and develop innovative solutions. Just like the clinical research is systematic and methodical, the improvement of the medical systems is also methodical to a large extent. This includes concepts and techniques that are quite fresh and new to a clinician who probably has never been exposed to these in their medical careers. These general principles of Innovation and Design thinking applied to other domains have yielded fantastic results and for the same to be applied in the medical domain, the role of the practicing clinician is central. As clinicians, we have always practiced innovation at some point of time in our career when we would have faced a resource crunch and were compelled to save the children and hence have tried to innovate on the devices, processes, etc., in our own way and has worked many a times. To generate many such solutions at large scale, the whole process needs to be methodical and systematic so that the solutions developed are safe and consistent at all times. Such a solution can be scaled up and made to reach across such setups where it is needed and there can be a measurable improvement in efficiency, quality, effectiveness, or economics of patient care delivery on a large scale.

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Weightman, Andrew Patrick Hayes, Nick Preston, Raymond Holt, Matthew Allsop, Martin Levesley y Bipinchandra Bhakta. "Engaging children in healthcare technology design: developing rehabilitation technology for children with cerebral palsy". Journal of Engineering Design 21, n.º 5 (25 de marzo de 2009): 579–600. http://dx.doi.org/10.1080/09544820802441092.

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Babbu, Abdul Halim y Mazharul Haque. "Design Characteristics for Sustainable Pediatric Healthcare Environments: Stakeholder’s Perception". European Journal of Sustainable Development 12, n.º 1 (1 de febrero de 2023): 113. http://dx.doi.org/10.14207/ejsd.2023.v12n1p113.

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Background: The therapeutic environments of children and adolescents differ from those of adults, and are complex entities. Though studies have been conducted on the built environments of adult healthcare facilities, the impact of therapeutic environments on the health outcomes of pediatric patients is yet to be explored. Objective: The purpose of this study is to investigate design characteristics for creating a pleasant, comfortable, and child-friendly physical environment in children's healthcare settings. Method: After extracting features that influence pediatric healthcare design from the relevant literature, a survey questionnaire, consisting of 45 items from 14 domains, was conducted. Principal component analysis (PCA) using varimax rotation was used to explore the intrinsic concept in an Indian sample (N= 224). Results: PCA with varimax rotation yielded 4- factors: (1) child-centred design characteristics; (2) indoor ambient environmental quality; (3) positive distraction strategies; and (4) sense of autonomy and control, accounting for 78.14% of the explained variance. A factor loading range of 0.41 to 0.93 was found across the four variables, indicating construct validity, and all the factors were found to be significantly related to each other. Conclusions: This study concludes that the built environment of pediatric healthcare settings impacts patients’ health outcomes and behaviour, with decreased patient stress & anxiety, and better family experience. The findings suggest the need of providing comfort to the children through several rejuvenating elements such as positive distraction strategies, play opportunities, family and peer interaction, child-friendly design, age-associated characteristics, etc. It also suggests various design characteristics that help contribute the positive patient health outcomes. Keywords: pediatric therapeutic environment, healthcare design, child-friendly design, therapeutic play, family-centred care

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Han, Hsing-Wen, Hsien-Ming Lien y Tzu-Ting Yang. "Patient Cost-Sharing and Healthcare Utilization in Early Childhood: Evidence from a Regression Discontinuity Design". American Economic Journal: Economic Policy 12, n.º 3 (1 de agosto de 2020): 238–78. http://dx.doi.org/10.1257/pol.20170009.

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This paper estimates the price elasticity of healthcare utilization in early childhood. We employ a regression discontinuity design by exploiting a subsidy that reduces patient cost-sharing for children under age 3 in Taiwan. Using longitudinal medical claims of over 410,000 children, we find a modest price elasticity of outpatient expenditure (e.g., −0.10 for regular outpatient care). Furthermore, increased cost-sharing at age 3 largely decreases the chance of visiting high-intensity healthcare providers (e.g., teaching hospitals) for minor illnesses. In contrast, children’s utilization of inpatient care is price insensitive, providing a rationale for full inpatient care coverage to children. (JEL H51, I11, I12, I13, I18, J13)

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Salami, Bukola, Alleson Mason, Jordana Salma, Sophie Yohani, Maryam Amin, Philomena Okeke-Ihejirika y Tehseen Ladha. "Access to Healthcare for Immigrant Children in Canada". International Journal of Environmental Research and Public Health 17, n.º 9 (10 de mayo de 2020): 3320. http://dx.doi.org/10.3390/ijerph17093320.

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Immigrants experience poorer health outcomes than nonimmigrants in Canada for several reasons. A central contributing factor to poor health outcomes for immigrants is access to healthcare. Previous research on access to healthcare for immigrants has largely focused on the experience of immigrant adults. The purpose of this study was to investigate how immigrants access health services for their children in Alberta, Canada. Our study involved a descriptive qualitative design. Upon receiving ethics approval from the University of Alberta Research Ethics Board, we invited immigrant parents to participate in this study. We interviewed 50 immigrant parents, including 17 fathers and 33 mothers. Interviews were audio recorded, transcribed, and analyzed according to the themes that emerged. Findings reveal that systemic barriers contributed to challenges in accessing healthcare for immigrant children. Participants identified several of these barriers—namely, system barriers, language and cultural barriers, relationship with health professionals, and financial barriers. These barriers can be addressed by policymakers and service providers by strengthening the diversity of the workforce, addressing income as a social determinant of health, and improving access to language interpretation services.

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Setiawan, Agus, Poppy Fitriyani, Rizkiyani Istifada y Shefaly Shorey. "Healthcare Providers and Caregivers’ Perspectives on the Quality of Child Health Services in Urban Indonesia: A Mixed-Methods Study". International Journal of Environmental Research and Public Health 18, n.º 15 (29 de julio de 2021): 8047. http://dx.doi.org/10.3390/ijerph18158047.

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Although Indonesia’s child mortality rate has decreased in tandem with the global trend, healthcare services can be further improved for children. This study aims to explore the perceptions of healthcare providers and caregivers of children aged below five years to improve child health in urban Indonesia. A mixed-methods study design was adopted. Quantitative data were collected via questionnaires from the caregivers. Qualitative data were collected via semi-structured interviews from the healthcare providers. Analysis of 540 caregiver questionnaires regarding the care provided to their child revealed that the majority of them were very satisfied (46.1%) and satisfied (52.2%) with the care received. Analysis of 12 interviews with healthcare providers derived three major themes: (1) importance of one’s role as a healthcare provider; (2) factors affecting the delivery of healthcare; and (3) the way forward in caring for young children. Although caregivers were very satisfied with the care received for their children, the perception of healthcare providers regarding their responsibility in delivering care to children under five years old provides insights into improving the quality of services for children in Indonesia. Our findings suggest that mortality and morbidity of children aged below five years can be best reduced by optimizing primary and secondary preventive measures.

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Mimmo, Laurel, Susan Woolfenden, Joanne Travaglia, Iva Strnadová, Maya Tokutake and Karen Phillips, Matthew and Debbie van Hoek y Reema Harrison. "Codesigning patient experience measures for and with children and young people with intellectual disability: a study protocol". BMJ Open 11, n.º 12 (diciembre de 2021): e050973. http://dx.doi.org/10.1136/bmjopen-2021-050973.

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IntroductionChildren and young people with intellectual disability represent one of the most vulnerable groups in healthcare, yet they remain under-represented in projects to design, develop and/or improve healthcare service delivery. Increasingly, healthcare services are using various codesign and coproduction methodologies to engage children and young people in service delivery improvements.Methods and analysisThis study employs an inclusive approach to the study design and execution, including two co-researchers who are young people with intellectual disability on the project team. We will follow an adapted experience-based co-design methodology to enable children and young people with intellectual disability to participate fully in the co-design of a prototype tool for eliciting patient experience data from children and young people with intellectual disability in hospital.Ethics and disseminationThis study was granted ethical approval on 1 February 2021 by the Sydney Children’s Hospitals Network Human Research Ethics Committee, reference number 2020/ETH02898. Dissemination plan includes publications, doctoral thesis chapter, educational videos. A summary of findings will be shared with all participants and presented at the organisation quality and safety committee.

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Bester, Michelle, Yolanda Havenga y Zea Ligthelm. "Practices employed by South African healthcare providers to obtain consent for treatment from children". Nursing Ethics 25, n.º 5 (12 de agosto de 2016): 640–52. http://dx.doi.org/10.1177/0969733016660878.

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Background: The ability to consent promotes children’s access to health services. Healthcare providers should assess and arrive at a clinical judgement about the child’s maturity and mental capacity to obtain valid consent. Research objective: The objective of the study was to determine practices employed by South African healthcare providers to obtain consent for treatment from children. Research design: A qualitative, explorative, descriptive research design was used and the study was contextual. Participants and research context: In all, 24 healthcare providers (professional nurses and medical practitioners) were purposively sampled from a hospital and primary health clinics. Semi-structured interviews were used. Ethical consideration: Ethical approval was obtained from the Institutional Review Board and gatekeepers. Written informed consent was obtained from each participant. Findings: Healthcare providers’ current practices in obtaining consent from children revealed inconsistency in implementation as well as the yardstick used to determine children’s mental capacity. Building trust with children, sharing information and assessment were interlinked in obtaining consent. Discussion: The inconsistent practice has implications for children’s access to healthcare services. Conclusion: Inconsistent practices in the implementation of consent laws have the potential to violate children’s rights to bodily and psychological integrity, access to health services and having their opinions heard and be taken into consideration. Through uncovering the current perceptions and practices and a literature review, guidelines intended for use by the Department of Health could be developed.

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Gaminiesfahani, H., M. Lozanovska y R. Tucker. "A Scoping Review of the Impact on Children of the Built Environment Design Characteristics of Healing Spaces". HERD: Health Environments Research & Design Journal 13, n.º 4 (20 de febrero de 2020): 98–114. http://dx.doi.org/10.1177/1937586720903845.

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Aim: This article elucidates current understanding in pediatric healthcare building design via scoping review of research on the impacts on the health and well-being of children of the architectural and landscape characteristics of healing spaces. Background: Studies indicate that patients’ phenomenological experiences of the built environment characteristics of healthcare buildings can impact their healing and well-being. It follows that understanding the healing effects of landscape and architecture can inform the design of healthcare settings for increased health benefits. Method: This method comprises five search stages: (1) research question is formed; (2) key words, search terms, and search strategy are identified; (3) databases are searched, and papers are assessed via inclusion and exclusion criteria; (4) information of the selected articles is extracted and summarized; and (5) key findings are interpreted and reported via comparative tabulation. Results: One hundred seventy-three papers were found during the first search stage. After screening and evaluating for relevance and quality, 13 articles were selected for study. Analysis indicates that the built environment characteristics of pediatric healthcare environments that have healing benefits include access to nature, music, art and natural light, reduced crowding, reduced noise, and soft, cyclical, and user-controlled artificial lighting. Conclusions: While it is important to understand the design variables that influence pediatric healthcare, it is also necessary to contextualize them and to distinguish these variables from each other and appreciate their interaction. In other words, a more rounded understanding of these variables is required via research so that their individual and combined impacts are reflected in holistic design recommendations.

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김호곤 y Yong-ho Ha. "The Relationship between Value Recognition of Exercise and Healthcare Footwear Design Element for Children". Journal of Korea Design Forum 23, n.º 1 (febrero de 2018): 7–16. http://dx.doi.org/10.21326/ksdt.2018.23.1.001.

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Pesantes, M. Amalia y Patricia I. Documet. "Helping undocumented children in an emerging Latino community". International Journal of Migration, Health and Social Care 13, n.º 3 (11 de septiembre de 2017): 309–20. http://dx.doi.org/10.1108/ijmhsc-11-2015-0048.

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Purpose The purpose of this paper is to describe and discuss the limitations of strategies that mothers of undocumented Latino children use in an emerging community to address the health needs of their children. Design/methodology/approach In-depth interviews with low-income immigrant mothers of undocumented Latino children (n=10) and social service providers (n=6). Interviews were transcribed, coded using Atlas-ti and analyzed to identify common perspectives on the strategies used to secure healthcare for uninsured undocumented children. Findings Mothers of undocumented Latino children struggle to secure healthcare for their children. Based on the principles of familismo and personalismo, they rely on social support networks such as friends, relatives and fellow churchgoers to secure information about available healthcare options. Despite the willingness of social and health service providers to help them access healthcare, options are limited and depend on the actions of individuals rather than organized solutions. Securing care for undocumented children using families, friends and sympathetic individual providers as the source of information and advice leads to fragile unsustainable solutions. Research limitations/implications This paper adds to the small yet growing literature of Latinos in emerging communities. Practical implications Emerging Latino communities are usually unprepared to welcome Latinos and address its various needs. Undocumented children are a particularly vulnerable group and any sustainable strategy to address their needs would require structural changes in existing health services to ensure that undocumented children’s lives are not affected by poor health. Originality/value Healthcare access problems for immigrant children are presented from the perspective of parents and offers a nuanced description of health systems unpreparedness to provide care for vulnerable groups whose immigrant status is poorly understood.

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Rangachari, Pavani, Imran Parvez, Audrey-Ann LaFontaine, Christopher Mejias, Fahim Thawer, Jie Chen, Niharika Pathak y Renuka Mehta. "Effect of Disease Severity, Age of Child, and Clinic No-Shows on Unscheduled Healthcare Use for Childhood Asthma at an Academic Medical Center". International Journal of Environmental Research and Public Health 20, n.º 2 (13 de enero de 2023): 1508. http://dx.doi.org/10.3390/ijerph20021508.

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This study examines the influence of various individual demographic and risk factors on the use of unscheduled healthcare (emergency and inpatient visits) among pediatric outpatients with asthma over three retrospective timeframes (12, 18, and 24 months) at an academic health center. Out of a total of 410 children who visited an academic medical center for asthma outpatient care between 2019 and 2020, 105 (26%) were users of unscheduled healthcare for childhood asthma over the prior 12 months, 131 (32%) over the prior 18 months, and 147 (36%) over the prior 24 months. multiple logistic regression (MLR) analysis of the effect of individual risk factors revealed that asthma severity, age of child, and clinic no-shows were statistically significant predictors of unscheduled healthcare use for childhood asthma. Children with higher levels of asthma severity were significantly more likely to use unscheduled healthcare (compared to children with lower levels of asthma severity) across all three timeframes. Likewise, children with three to four clinic no-shows were significantly more likely to use unscheduled healthcare compared to children with zero clinic no-shows in the short term (12 and 18 months). In contrast, older children were significantly less likely to use unscheduled healthcare use compared to younger children in the longer term (24 months). By virtue of its scope and design, this study provides a foundation for addressing a need identified in the literature for short- and long-term strategies for improving supported self-management and reducing unscheduled healthcare use for childhood asthma at the patient, provider, and organizational levels, e.g., (1) implementing telehealth services for asthma outpatient care to reduce clinic no-shows across all levels of asthma severity in the short term; (2) developing a provider–patient partnership to enable patient-centered asthma control among younger children with higher asthma severity in the long term; and (3) identifying hospital–community linkages to address social risk factors influencing clinic no-shows and unscheduled healthcare use among younger children with higher asthma severity in the long term.

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Kelsall-Knight, Lucille. "Qualitative exploration of lesbian parents’ experiences of accessing healthcare for their adopted children in England". BMJ Open 11, n.º 10 (octubre de 2021): e053710. http://dx.doi.org/10.1136/bmjopen-2021-053710.

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ObjectiveTo explore the experiences of lesbian parents accessing healthcare for their adopted children in England.DesignA qualitative inductive design, using narrative inquiry with a critical incident recall interview approach. Interviews were analysed using merged tools of critical event analysis and broadening, burrowing, storying and restorying.SettingParticipants were recruited from a British lesbian, gay, bisexual and transgender fostering and adoption charity.ParticipantsSix lesbian adoptive parents with experience of accessing healthcare for their adopted children in England.ResultsFollowing data analysis, five themes were identified: navigating heteronormativity, navigating healthcare settings and professionals and having an ‘adopted’ status, intersectional identity of lesbian-parented adoptive families accessing healthcare, reflective imagery of lesbian parents and adoptive families and professional expectations. Self-imposed strategies instigated by the parents to strengthen and protect their familial identities were also discovered.ConclusionsThe needs and challenges of lesbian adoptive families may be different to those of heterosexual and biological families when accessing healthcare. There was an undercurrent of discriminatory practice, shown by various healthcare professionals, and a lack of understanding of the adoption process, knowledge surrounding the child’s history and legal stance with regards to parental responsibility. Further training is needed for healthcare professionals.

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Mage, Ermy S. R., Rinawaty Sirait y Amelya Betsalonia Sir. "Factors Related to The Visit of Children Under Five in Obesi Village Integrated Healthcare Center". Lontar : Journal of Community Health 2, n.º 3 (15 de septiembre de 2020): 101–12. http://dx.doi.org/10.35508/ljch.v2i3.3370.

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The integrated healthcare center is a form of community-based health effort for monitoring the health and growth of toddlers as a strategy to reduce health problems, especially the toddler mortality rate. Mother’s behavior to visit integrated healthcare center is influenced by various factors. This study aims to analyze the factors related to the visit of children under five. This is an analytical study with a cross-sectional study design. This research was conducted in two integrated healthcare centers in Obesi Village in March 2020. The population of this study is 123 mothers. The sample size in this study was calculated using the Slovin formula obtained 95 mothers. Then sample calculation for each integrated healthcare center was carried out using the proportional simple random sampling formula. The data were collected using questionnaires and then analyzed using the chi-square test with a confidence level of 95% % . The results showed that maternal knowledge (p-value = 1,000), maternal attitude (p-value = 1,000), maternal occupation (p-value = 0,475), attitude of health workers (p-value = 1,000) are not related to the visits of children under five. But integrated healthcare center distance (p-value = 0,012) and husband’s support are related to the visits of children under five 2019 (p-value = 0,019). This study shows that the visits of children under five to integrated healthcare center is influenced by various factors, therefore it is recommended to the community and various related parties to support mothers of children under five in making visits to the integrated healthcare center.

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Parbhu, Neerali, Stephen Reay, Erik Landhuis y Tineke Water. "Differing perspectives: Evaluation of a new IV pole by children and adults". Journal of Child Health Care 23, n.º 4 (10 de enero de 2019): 551–63. http://dx.doi.org/10.1177/1367493518819221.

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Involving children in the evaluation of hospital environments has been recognized as important. It is argued that this should extend to engaging children in the evaluation of medical products. A study was undertaken to evaluate how children, parents/caregivers and nurses viewed the design of a new intravenous (IV) pole compared to the existing IV pole currently used. Children and adults were asked to give their perspectives on mobility, safety, aesthetics and functionality of the new and existing IV poles. The findings suggest that children value different aspects of medical product design than adults. We conclude that designers, manufacturers and healthcare organizations should recognize the importance and benefit of involving children in the design of medical products that will ultimately be used by them.

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Pols, David HJ, Mark MJ Nielen, Arthur M. Bohnen, Joke C. Korevaar y Patrick JE Bindels. "Increased healthcare utilisation among atopic children in a general practice database: a nested index-control study". BJGP Open 2, n.º 1 (6 de febrero de 2018): bjgpopen18X101349. http://dx.doi.org/10.3399/bjgpopen18x101349.

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BackgroundAtopic eczema, asthma, and allergic rhinitis (AR) create a serious burden on general practice resources.AimTo investigate the use of general practice resources (that is, consultation visits, telephone contacts, and home visits) in children with physician-diagnosed atopic disorders (ADs).Design & settingIn a nested index-control study design, all children (here defined as individuals aged 2–18 years) listed in a representative general practice database were selected in 2014.MethodChildren diagnosed with ADs were matched on age and sex with non-atopic controls within the same practice. For all the different groups, the number and frequency of children contacting the GP were calculated.ResultsOf the children with atopic eczema (n= 15 202), 80% consulted the GP in 2014 (controls = 67%). Of the children with asthma (n= 7754), 80% consulted the GP (controls = 65%), and for children with AR (n= 6710), this was 82% (controls = 66%). Of the children with all three ADs, 91% consulted the GP (controls = 68%). On average, a child with atopic eczema contacted the GP 2.8 times/year (controls = 1.9); for children with asthma, the contact frequency was 3.0 (controls = 1.9); and for AR, 3.2 (controls = 1.9). For children with all three ADs, the contact frequency was 4.3 (controls = 2.0). Consultations related to the ADs investigated only explain a smaller part of the increased healthcare utilisation in atopic children.ConclusionAtopic children use more general practice resources compared to non-atopic children, yet frequently for morbidity or other health-related questions not related to one of the ADs.

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Erika, Kadek Ayu y Elly Nurachmah. "Pengaruh Pendekatan Child Healthcare Modeldan Transtheoretical Model terhadap Asupan Makan Anak Overweight dan Obesitas". Kesmas: National Public Health Journal 9, n.º 1 (1 de agosto de 2014): 14. http://dx.doi.org/10.21109/kesmas.v9i1.450.

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Overweight dan obesitas pada anak merupakan suatu masalah yang kompleks disebabkan multifaktor, yaitu interaksi genetik dan lingkungan. Gaya hidup perkotaan dipicu oleh asupan makanan yang berlebih pada anak overweight dan obesitas. Strategi untuk menurunkan asupan makan berlebih pada anak adalah dengan pendekatan child healthcare model dan transtheoretical model sehingga dapat mengendalikan gaya hidup anak. Penelitian ini bertujuan membuktikan pengaruh pendekatan child healthcare dan transtheoretical model terhadap asupan karbohidrat anak overweight dan obesitas. Penelitian ini dilaksanakan di wilayah kecamatan Biringkanaya dan Tamalanrea, Makassar, pada bulan Agustus 2013 sampai Maret 2014. Desain yang digunakan adalah quasy experiment yaitu pretest and posttest with control group design. Sampel dipilih secara purposive sebanyak 31 anak overweight atau obesitas pada kelompok perlakuan dan 33 kontrol pada anak sekolah dasar kelas 4 - 6. Intervensi penelitian 6 bulan dengan pemberian buku panduan gaya hidup sehat. Instrumen menggunakan kuesioner food recall. Hasil uji-t berpasangan menghasilkan asupan karbohidrat pada pre-post intervensi kelompok perlakuan dengan nilai p 0,004 ( < 0,05) sedangkan kelompok kontrol dengan nilai p 0,114. Penelitian ini menyimpulkan bahwa ada pengaruh pendekatan child healthcare model dan transtheoretical model terhadap asupan karbohidrat anak overweight dan obesitas.Overweight and obesity in children is a complex problem that is caused by a multifactorial genetic and environmental interactions. Urban lifestyle fueled by excessive food intake in overweight and obese children. Strategies to reduce excessive food intake in children is the child healthcare approach and the transtheoretical model so that the model can control the child’s lifestyle. This study aimed to prove the effect of child healthcare approach and the transtheoretical model of the food intake of overweight and obese children. This research was conducted in the district area Tamalanrea and Biringkanaya, Makassar from August 2013 to March 2014. The design used is quasy experiment pretest and posttest with control group design. Purposively selected sample of 31 children as overweight or obese in the treatment group and 33 controls on primary school children grade 4 - 6. Intervention research was conducted during a six month period by providing guide books on healthy lifestyle. The instrument used food recall questionnaire. Paired t-test results produced carbohydrate intake in the pre-post intervention treatment groups with p value 0.004 (<0.05), whereas the control group with p value of 0.114. This study concludes that there is influence of CHM and TTM approaches to the intake of carbohydrates of overweight and obese children.

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Riquelme, Inmaculada, Álvaro Sabater-Gárriz y Pedro Montoya. "Pain and Communication in Children with Cerebral Palsy: Influence on Parents’ Perception of Family Impact and Healthcare Satisfaction". Children 8, n.º 2 (27 de enero de 2021): 87. http://dx.doi.org/10.3390/children8020087.

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Cerebral palsy (CP) is an impacting chronic condition. Concomitant comorbidities such as pain and speech inability may further affect parents’ perception of the pathology impact in the family quality of life and the provided care. The objective of this cross-sectional descriptive correlational study was to compare parental reports on family impact and healthcare satisfaction in children with CP with and without chronic pain and with and without speech ability. Parents of 59 children with CP (age range = 4–18 years) completed several questions about pain and speech ability and two modules of the Pediatric Quality of Life Measurement Model: The PedsQLTM 2.0 Family Impact Module and the PedsQLTM Healthcare Satisfaction Generic Module. Our findings revealed that children’s pain slightly impacted family physical health, social health and worry. In children without pain, speech inability increased the perceived health impact. Parents’ healthcare satisfaction was barely affected by pain or speech inability, both increasing parents’ satisfaction in the professional technical skills and inclusion of family domains on the care plan. In conclusion, pain and speech inability in children with CP can impact family health but not healthcare satisfaction. Regular assessment and intervention in family health is essential for the design of family-centred programs for children with CP.

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Noble, Fiona, Jennifer Kettle, Joe Hulin, Annie Morgan, Helen Rodd y Zoe Marshman. "‘I Would Rather Be Having My Leg Cut off Than a Little Needle’: A Supplementary Qualitative Analysis of Dentally Anxious Children’s Experiences of Needle Fear". Dentistry Journal 8, n.º 2 (13 de mayo de 2020): 50. http://dx.doi.org/10.3390/dj8020050.

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Fear of needles is common in childhood, with up to 50% being affected to some degree. In individuals who are dentally anxious, the prevalence may be as high as 91%. Fear of needles, and therefore intra-oral injections can have negative impacts on children’s quality of life and healthcare experiences, including a requirement for pharmacological methods to facilitate dental treatment. The aim of this study is to identify whether dentally anxious children report fear of injections and explore how these children experience a fear of needles in a dental setting. A supplementary analysis of interviews collected as part of two previous studies relating to children with dental anxiety. Five main themes were identified: feelings about needles; the nature of needle fear; the context of the fear, its consequences and how children tried to control the process. Children showed a desire to have control of their healthcare interventions, and wanted to trust the healthcare professionals giving the injections. There is evidence that children with dental anxiety also experience fear of needles, including intra-oral injections. Further primary qualitative research is needed to explore this topic in more depth and to design appropriate child centred interventions to reduce needle fear.

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Rungamornrat, Somsiri, Apawan Nookong, Yuwadee Pongsaranuntakul y Chonlasin Srilasak. "Factors Influencing the Quality of Life and Nutritional Status of 0-2 Years Old Children". Siriraj Medical Journal 74, n.º 3 (1 de marzo de 2022): 142–51. http://dx.doi.org/10.33192/smj.2022.18.

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Objective: To investigate the effects of children factors, family factors, and access to healthcare services on children’s quality of life as perceived by caregivers and nutritional status of 0 to 2 years old children.Materials and Methods: This study employed predictive design. The sample group consisted of 106 caregivers with children aged 0 to 2 years old from five subdistricts in one province in Central region in Thailand. The research instruments included the Demographic Data of Parents and Children Questionnaire; the Access to Healthcare Services Questionnaire; the Child-Rearing Practices Questionnaire; the Quality of Life of 0-2-year-old Children Questionnaire. The data were analyzed by using the Chi-square, Fisher’s exact test, and multivariate logistic regression.Results: Logistic regression model accounted for 34 % of variance in children’s quality of life (Nagelkerke R2= 0.34) and 35.3% of variance in their nutritional status (Nagelkerke R2=.35). Factors predicting the QoL of children were the maternal age (OR=4.75; 95%CI = 1.16, 19.45, p < .05), and the child-rearing practices (OR=5.68; 95%CI = 1.97, 16.40, p < .05). Factors predicting nutritional status were maternal age (OR=0.088; 95%CI = 0.01, 0.79; OR=0.225; 95%CI=0.02, 2.34, p < .05), and child-rearing practices (OR=7.84; 95%CI = 1.93, 31.84, p < .05). Finally, access to healthcare services had a significant association with QoL of children (χ2 = 9.632, p < .05).Conclusion: Healthcare personnel should improve children’s quality of life and nutritional status by organizing programs to promote child-rearing practices and facilitating parents for accessibility to healthcare services.

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Qamaria, Aziza Ainur y Nur Yeny Hidajaturrokhmah. "The Relationship of Participation in Early Childhood Education Activities at the Integrated Healthcare Center Park with the Development of Toddler Children in NgadiRenggo Village, Pogalan District, Trenggalek Regency". Open Access Health Scientific Journal 2, n.º 1 (5 de febrero de 2021): 20–27. http://dx.doi.org/10.55700/oahsj.v2i1.15.

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Background: Integrated healthcare center park is a government effort in optimizing Integrated healthcare center activities so that they do not only carry out monitoring functions but are also promotive efforts to stimulate child growth and development better, but in fact there are still many children who have not participated in Taman Integrated healthcare center either due to limited facilities and there are still many parents who doubt the benefits. Method: The design of this study was observational with a cross sectional approach. The population of this study were all toddlers in Ngadirenggo Village, Pogalan District-Trenggalek totaling 399 toddlers, with a proportioned random sampling technique obtained a sample of 40 respondents. The independent variable is the participation of Taman Integrated healthcare center with the dependent variable being child development. Data analysis using Spearman rank test at=0.05. Results: The results showed that all respondents who participated in Taman Integrated healthcare center had the appropriate category development, namely 8 respondents (100.0%) and most of the respondents who did not participate in Taman Integrated healthcare center had development in the appropriate category, namely 22 respondents (55.0%). The results of the analysis showed that there was a relationship between participation in Early Childhood Education Programs activities at the Integrated healthcare center Park with the development of children under five in Ngadirenggo Village, Pogalan District, Trenggalek Regency (p = 0.005 < = 0.05). Conclusion: Children who participate in the integrated healthcare center park will get better monitoring of growth and development, besides that they will also get developmental stimulation through group activities. Existing play and learning activities are useful in honing children's development so that children who participate in Integrated healthcare center parks tend to have more appropriate developments

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Sato, Mari, Hitoshi Oshitani, Raita Tamaki, Nobuko Oyamada, Kineko Sato, Alkaff Raihana Nadra, Jhoys Landicho, Portia P. Alday, Socorro P. Lupisan y Veronica L. Tallo. "Factors affecting mothers’ intentions to visit healthcare facilities before hospitalisation of children with pneumonia in Biliran province, Philippines: a qualitative study". BMJ Open 10, n.º 8 (agosto de 2020): e036261. http://dx.doi.org/10.1136/bmjopen-2019-036261.

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Background and objectivesDespite a substantial reduction in the mortality rate of children under 5 years in the past 25 years, pneumonia remains the single-largest infectious cause of child deaths worldwide. This study explored the chronological order of visited healthcare facilities and practitioners, and the factors affecting mothers’ intention to seek care before the hospitalisation of children with pneumonia.Methods and analysisA qualitative research design was employed using theory of planned behaviour as a framework for the analysis. Using purposive sampling technique, 11 mothers, whose children under 5 years old were hospitalised with severe pneumonia, were recruited for individual semi-structured interviews. Their socio-demographic information was analysed using descriptive statistics.ResultsMothers brought their sick children to multiple facilities, and 1 to 19 days had passed before hospitalisation. We identified four major factors determining mothers’ intentions: (1) doing something useful for the sick child, (2) expecting the child to receive the necessary assessment and treatment, (3) accepting advice to visit a healthcare facility and be referred to a hospital and (4) considering issues and benefits associated with hospitalisation. Mothers noticed their children’s unusual symptoms and monitored them while applying home remedies. They also took their children to traditional healers despite knowing that the treatments were not necessarily effective. Mothers expected children to be checked by health professionals and listened to advice from family members regarding the facilities to visit, and from healthcare staff to be referred to a hospital. Financial issues and the double burden of housework and caring for the hospitalised child were mothers’ major concerns about hospitalisation.ConclusionChildren were hospitalised after several days because they visited multiple healthcare facilities, including traditional healers. Improving care quality at healthcare facilities and reducing financial and mothers’ burden may reduce the hospitalisation delay for children with pneumonia.

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Nilsson, Stefan, Angelica Wiljén, Jonas Bergquist, John Chaplin, Ensa Johnson, Katarina Karlsson, Tomas Lindroth et al. "Evaluating pictorial support in person-centred care for children (PicPecc): a protocol for a crossover design study". BMJ Open 11, n.º 5 (mayo de 2021): e042726. http://dx.doi.org/10.1136/bmjopen-2020-042726.

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IntroductionThis study protocol outlines the evaluation of the pictorial support in person-centred care for children (PicPecc). PicPecc is a digital tool used by children aged 5–17 years to self-report symptoms of acute lymphoblastic leukaemia, who undergo high-dose methotrexate treatments. The design of the digital platform follows the principles of universal design using pictorial support to provide accessibility for all children regardless of communication or language challenges and thus facilitating international comparison.Methods and analysisBoth effect and process evaluations will be conducted. A crossover design will be used to measure the effect/outcome, and a mixed-methods design will be used to measure the process/implementation. The primary outcome in the effect evaluation will be self-reported distress. Secondary outcomes will be stress levels monitored via neuropeptides, neurosteroids and peripheral steroids indicated in plasma blood samples; frequency of in-app estimation of high levels of distress by the children; children's use of analgesic medicine and person centeredness evaluated via the questionnaire Visual CARE Measure. For the process evaluation, qualitative interviews will be carried out with children with cancer, their legal guardians and case-related healthcare professionals. These interviews will address experiences with PicPecc in terms of feasibility and frequency of use from the child’s perspective and value to the caseworker. Interview transcripts will be analysed using an interpretive description methodology.Ethics and disseminationEthical approval was obtained from the Swedish Ethical Review Authority (reference 2019-02392; 2020-02601; 2020-06226). Children, legal guardians, healthcare professionals, policymaking and research stakeholders will be involved in all stages of the research process according to Medical Research Council’s guidelines. Research findings will be presented at international cancer and paediatric conferences and published in scientific journals.Trial registrationClinicalTrials.gov; NCT04433650.

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Schroeder, Alan R., Alex Dahlen, Natasha Purington, Francisco Alvarez, Rona Brooks, Lauren Destino, Gayatri Madduri, Marie Wang y Eric R. Coon. "Healthcare utilization in children across the care continuum during the COVID-19 pandemic". PLOS ONE 17, n.º 10 (27 de octubre de 2022): e0276461. http://dx.doi.org/10.1371/journal.pone.0276461.

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Objectives Healthcare utilization decreased during the COVID-19 pandemic, likely due to reduced transmission of infections and healthcare avoidance. Though various investigations have described these changing patterns in children, most have analyzed specific care settings. We compared healthcare utilization, prescriptions, and diagnosis patterns in children across the care continuum during the first year of the pandemic with preceding years. Study design Using national claims data, we compared enrollees under 18 years during the pre-pandemic (January 2016 –mid-March 2020) and pandemic (mid-March 2020 through March 2021) periods. The pandemic was further divided into early (mid-March through mid-June 2020) and middle (mid-June 2020 through March 2021) periods. Utilization was compared using interrupted time series. Results The mean number of pediatric enrollees/month was 2,519,755 in the pre-pandemic and 2,428,912 in the pandemic period. Utilization decreased across all settings in the early pandemic, with the greatest decrease (76.9%, 95% confidence interval [CI] 72.6–80.5%) seen for urgent care visits. Only well visits returned to pre-pandemic rates during the mid-pandemic. Hospitalizations decreased by 43% (95% CI 37.4–48.1) during the early pandemic and were still 26.6% (17.7–34.6) lower mid-pandemic. However, hospitalizations in non-psychiatric facilities for various mental health disorders increased substantially mid-pandemic. Conclusion Healthcare utilization in children dropped substantially during the first year of the pandemic, with a shift away from infectious diseases and a spike in mental health hospitalizations. These findings are important to characterize as we monitor the health of children, can be used to inform healthcare strategies during subsequent COVID-19 surges and/or future pandemics, and may help identify training gaps for pediatric trainees. Subsequent investigations should examine how changes in healthcare utilization impacted the incidence and outcomes of specific diseases.

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Norviana, Eda, Lensi Natalia Tambunan y Eva Prilelli Baringbing. "Hubungan Perilaku Ibu tentang Pemanfaatan Posyandu dengan Status Gizi pada Balita". Jurnal Surya Medika 8, n.º 2 (31 de agosto de 2022): 163–70. http://dx.doi.org/10.33084/jsm.v8i2.3881.

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Background: Toddlers are children under five years of age marked by a very rapid growth and development process. Infancy is a period that is vulnerable to disease, especially nutritional problems. One of the factors not utilizing integrated healthcare centers regularly will affect the nutritional status of toddlers so that toddlers will experience malnutrition. This is because mothers cannot monitor the growth and development of toddlers if the occurrence of nutritional problems in toddlers cannot be detected early. Objective: The study determined the relationship between maternal behavior regarding the use of integrated healthcare centers with nutritional status in toddlers. Methods: literature review design, Google Scholar data source (2017-2020), articles using Indonesian language, with a population of mothers of toddlers and toddlers. From the search results, the study obtained six inclusion criteria. The research design used was a cross-sectional, descriptive correlation. Results: A total of six articles analyzed stated a relationship between mother's behavior regarding the use of integrated healthcare centers with nutritional status in toddlers. (p-value 0.000 < 0.05). Conclusion: Based on the study results, six articles stated a relationship between maternal behavior regarding the use of integrated service posts with nutritional status in toddlers. Factors that affect the nutritional status of children under five are the mother's behavior in the use of integrated service posts; this is because in the use of integrated healthcare centers, there is weighing of children under five, counseling on nutrition, Supplementary Food Provision (PTM) and early detection through Cards Towards Health (KMS) which supports the improvement of nutrition in toddlers and optimal growth.

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Petersson, Christina, Karin Åkesson, Karina Huus, Karin Enskär y Marie Golsäter. "To promote child involvement - healthcare professionals’ use of a health-related quality of life assessment tool during paediatric encounters". European Journal for Person Centered Healthcare 5, n.º 1 (23 de mayo de 2017): 26. http://dx.doi.org/10.5750/ejpch.v5i1.1201.

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Background, aims and objectives: Children and healthcare professionals should be provided with easy-to-use tools which could lead to actionable results. There is increasing interest in the use of patient-reported outcomes to aid management of individual care; therefore the use of health-related quality of life (HRQOL) assessments during consultations need to be studied. The aim of this study was to explore how healthcare professionals use a HRQOL assessment tool during paediatric encounters. Methods: A descriptive, explorative design with a qualitative approach based on video-recordings was chosen. Twenty-one video recordings, from 9 different healthcare professionals’ consultations where an assessment tool of HRQOL were used, were analysed by content analysis. Results: The healthcare professionals were using different strategies and when they combined these strategies 3 approaches emerged. The instructing approach was characterized by healthcare professionals giving a summary of the results, leading to children becoming passive bystanders in the encounter. An inviting approach, requesting the children’s perceptions of their situation resulted in the children becoming involved in the conversations. Conclusions: The child’s involvement could be facilitated depending on which approach was being used. When an inviting and engaging approach is used, actions in a non-linear set of interactions was co-produced with the child. The use of an HRQOL assessment tool changed the management during consultations and acted to promote child involvement.

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Coutinho, Geraldo Gaspar Paes Leme, Eny Maria Goloni-Bertollo y Érika Cristina Pavarino-Bertelli. "Effectiveness of two programs of intermittent ferrous supplementation for treating iron-deficiency anemia in infants: randomized clinical trial". Sao Paulo Medical Journal 126, n.º 6 (noviembre de 2008): 314–18. http://dx.doi.org/10.1590/s1516-31802008000600004.

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CONTEXT AND OBJECTIVE: Low compliance among mothers regarding the treatment of anemic children using daily doses of ferrous sulfate administered at home has been reported. This study aimed to establish the effectiveness of weekly doses administered by mothers at home compared with weekly supplements administered directly by healthcare professionals, to reduce the prevalence of anemia. DESIGN AND SETTING: This was a randomized clinical trial at a public healthcare clinic in São José do Rio Preto, Brazil. METHODS: This iron supplementation study was carried out using two intervention groups. The sample population was 130 infants, randomly allocated to two groups of 65 children. All of them received 12 weekly doses of 25 mg of elemental iron, administered either in the public healthcare clinic or at their homes. RESULTS: Treatment compliance was shown in both groups. The prevalence of anemia among all of the children was 75% at the beginning of supplementation and 46.3% at the end of the period (P < 0.0005), corresponding to a reduction in the number of anemic children of 38.3%. The average increases in hemoglobin concentration levels were 0.75 g/dl and 0.65 g/dl, respectively for home interventions and healthcare clinic administration (P < 0.00005). CONCLUSION: Weekly supplementation of 25 mg of iron was proven to be efficient in reducing anemia, using interventions both at home and in healthcare clinics. Compliance among the mothers was achieved because weekly supplementation was easy to administer and had few side effects. The results showed that the treatment presented low cost and fast benefits.

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Chidambaran, Vidya, Blair Simpson, Laura Brower, Rachel Hanke, Marc Mecoli, Blake Lane, Sara Williams et al. "Design and implementation of a novel patient-centered empowerment approach for pain optimisation in children undergoing major surgery". BMJ Open Quality 11, n.º 3 (julio de 2022): e001874. http://dx.doi.org/10.1136/bmjoq-2022-001874.

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BackgroundPaediatric surgery is a stressful experience for patients and caregivers. While standardised protocols are the norm, patient-centred approaches are needed to empower patients/caregivers for an optimal perioperative pain experience. To address this gap, we employed a patient-centred approach using design thinking (DT) methodology to develop insights, map processes, identify opportunities and design solutions for individualised empowerment tools.MethodsIn consultation with DT experts, a multidisciplinary team of stakeholders (healthcare providers, patients who underwent pectus excavatum/scoliosis surgery and their caregivers), were invited to participate in surveys, interviews and focus groups. The project was conducted in two sequential stages each over 24 weeks—involving 7 families in stage 1 and 16 patients/17 caregivers in stage 2. Each stage consisted of three phases: design research (focus groups with key stakeholders to review and apply collective learnings, map processes, stressors, identify influencing factors and opportunities), concept ideation (benchmarking and co-creation of new solutions) and concept refinement.ResultsIn stage 1, mapping of stress/anxiety peaks identified target intervention times. We identified positive and negative influencers as well as the need for consistent messaging from the healthcare team in our design research. Current educational tools were benchmarked, parent-child engagement dyads determined and healthcare-based technology-based solutions conceived. The ‘hero’s journey’ concept which has been applied to other illness paradigms for motivation successfully the was adapted to describe surgery as a transformative experience. In stage 2, patient and caregiver expectations, distinct personas and responses to perioperative experience were categorised. Educational tools and an empowerment tool kit based on sensorial, thinking, relaxation and activity themes, tailored to parent/child categories were conceptualised.ConclusionDT methodology provided novel family centred insights, enabling design of tailored empowerment toolkits to optimise perioperative experience. Adapting the hero’s journey call to adventure may motivate and build resilience among children undergoing surgery.

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Hirsch-Moverman, Yael, Michael Strauss, Gavin George, Anthony Mutiti, Arnold Mafukidze, Siphesihle Shongwe, Gloria Sisi Dube, Wafaa M. El Sadr, Joanne E. Mantell y Andrea A. Howard. "Paediatric tuberculosis preventive treatment preferences among HIV-positive children, caregivers and healthcare providers in Eswatini: a discrete choice experiment". BMJ Open 11, n.º 10 (octubre de 2021): e048443. http://dx.doi.org/10.1136/bmjopen-2020-048443.

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ObjectiveIsoniazid preventive therapy initiation and completion rates are suboptimal among children. Shorter tuberculosis (TB) preventive treatment (TPT) regimens have demonstrated safety and efficacy in children and may improve adherence but are not widely used in high TB burden countries. Understanding preferences regarding TPT regimens’ characteristics and service delivery models is key to designing services to improve TPT initiation and completion rates. We examined paediatric TPT preferences in Eswatini, a high TB burden country.DesignWe conducted a sequential mixed-methods study utilising qualitative methods to inform the design of a discrete choice experiment (DCE) among HIV-positive children, caregivers and healthcare providers (HCP). Drug regimen and service delivery characteristics included pill size and formulation, dosing frequency, medication taste, treatment duration and visit frequency, visit cost, clinic wait time, and clinic operating hours. An unlabelled, binary choice design was used; data were analysed using fixed and mixed effects logistic regression models, with stratified models for children, caregivers and HCP.SettingThe study was conducted in 20 healthcare facilities providing TB/HIV care in Manzini, Eswatini, from November 2018 to December 2019.ParticipantsNinety-one stakeholders completed in-depth interviews to inform the DCE design; 150 children 10–14 years, 150 caregivers and 150 HCP completed the DCE.ResultsDespite some heterogeneity, the results were fairly consistent among participants, with palatability of medications viewed as the most important TPT attribute; fewer and smaller pills were also preferred. Additionally, shorter waiting times and cost of visit were found to be significant drivers of choices.ConclusionPalatable medication, smaller/fewer pills, low visit costs and shorter clinic wait times are important factors when designing TPT services for children and should be considered as new paediatric TPT regimens in Eswatini are rolled out. More research is needed to determine the extent to which preferences drive TPT initiation, adherence and completion rates.

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Cartland, Jenifer, Holly S. Ruch-Ross, Lauren Carr, Audrey Hall, Richard Olsen, Ellen Rosendale y Susan Ruohonen. "The Role of Hospital Design in Reducing Anxiety for Pediatric Patients". HERD: Health Environments Research & Design Journal 11, n.º 3 (12 de junio de 2018): 66–79. http://dx.doi.org/10.1177/1937586718779219.

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Objectives: To study the impact of hospital design on patient and family experiences during and after hospitalization. Background: Hospitalization can be psychologically traumatic for children. Few research studies have studied the role of the design of the hospital environment in mitigating that traumatic experience. Methods: The study employs a two-group posttest and follow-up design to compare the impact of hospitalization on child anxiety and parent stress. It compares the experiences of children (ages 3–17) hospitalized at a new facility designed to support child-centered care and with family-friendly features with an older facility that did not have these features. The new facility was a replacement of the old one, so that many challenges to comparison are addressed. Results: Controlling for the facts of hospitalization, patient demographics, and the child’s typical anxiety level, children in the new facility experienced less anxiety than in the old facility. The study does not provide evidence that the hospital design reduced the psychological sequelae of hospitalization. Parents and children found different features of the hospital to be restorative. Conclusions: The study supports the use of Ulrich’s theory of supportive design to children’s healthcare environments, though what is experienced as supportive design will vary by the developmental stage of the child.

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Laronne, Anat, Leeat Granek, Lori Wiener, Paula Feder-Bubis y Hana Golan. "Organizational and individual barriers and facilitators to the integration of pediatric palliative care for children: A grounded theory study". Palliative Medicine 35, n.º 8 (5 de julio de 2021): 1612–24. http://dx.doi.org/10.1177/02692163211026171.

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Background: Pediatric palliative care has established benefits for children with cancer and their families. Overcoming organizational and healthcare provider barriers have been demonstrated as central for the provision of palliative care in pediatric oncology. A deeper understanding is needed of the influence of these barriers and the interactions between them, specifically in primary palliative care in hospital settings. Aim: To identify the organizational and healthcare provider barriers to the provision of primary pediatric palliative care. Design: This study utilized the grounded theory method. Semi-structured interviews were conducted and analyzed line by line, using NVivo software. Setting/participants: Forty-six pediatric oncologists, nurses, psychosocial team members, and other healthcare providers from six academic hospital centers participated in the research. Results: Organizational and healthcare provider factors were identified, each of which acted as both a barrier and facilitator to the provision of pediatric palliative care. Organizational barriers included lack of resources and management. Facilitators included external resources, resource management, and a palliative care center within the hospital. Individual barriers included attitudes toward palliative care among pediatric oncologists, pediatric oncologists’ personalities, and the emotional burden of providing palliative care. Facilitators include dedication and commitment, initiative, and sense of meaning. Provider facilitators for palliative care had a buffering effect on organizational barriers. Conclusion: Organizational and healthcare provider factors influence the quality and quantity of palliative care given to children and their families. This finding has implications on interventions structured to promote primary palliative care for children, especially in healthcare systems and situations where resources are limited.

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Suka, Veronika, Ahmad Watsiq Maula, Dian Mawarni, Retna Siwi Padmawati y Mubasysyir Hasanbasri. "Administrative versus field work activities in urban and rural East Indonesian region: analysis of 85 health center managers from the 2012 IFLS East". Berita Kedokteran Masyarakat 34, n.º 3 (15 de marzo de 2018): 137. http://dx.doi.org/10.22146/bkm.33988.

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Purpose: This study aimed to determine managerial factors that can affect outside services of primary health care centers in urban and rural areas.Methods: This study was a quantitative research using secondary data from the IFLS East 2012, with a cross-sectional survey design. The study population was 1690 primary healthcare leaders who were scattered over 7 provinces in the East Indonesia region (Nusa Tenggara Timur, Kalimantan Timur, Sulawesi Tenggara, Maluku, Maluku Utara, Papua Barat, and Papua). Selected samples were 97 primary healthcare leaders based on IFLS East 2012. Sampling was from 7 provinces, based on Susenas July 2010 data. Results: A primary healthcare leader who was not a doctor and stayed in the village (rural) had more outdoor activities compared to a doctor who stayed in the city (urban). Primary healthcare which was led by a leader who was not a medical doctor and was located in the village (rural), conducted counseling and children examination 15 times more often compared to primary healthcare providers which was located in the city (urban).Conclusion: Primary healthcare leaders who were a medical doctor were more likely to do outdoor activity for administration duties such as meetings and seminars. Primary healthcare leaders who were not a medical doctor were more likely to do outdoor activity such as counseling and children examination. Primary healthcare which was located in the village (rural) had more outdoor activity rather than the one that was located in the city (urban).

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Khairani, Nurul y Pawiliyah Pawiliyah. "THE RELATIONSHIP BETWEEN FAMILY CHARACTERISTICS WITH STUNTING INCIDENCE IN WORKING AREA OF PADANG SERAI PUBLIC HEALTH CENTER". Nurse and Health: Jurnal Keperawatan 9, n.º 2 (27 de diciembre de 2020): 184–93. http://dx.doi.org/10.36720/nhjk.v9i2.196.

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Background: Under-fives who have stunting have a risk of decreased intellectual ability, productivity, and increased risk of degenerative diseases in the future (Anugraheni & Kartasurya, 2012). Objective: to examine the relationship between family characteristics with stunting incidence of under five children who visited the Integrated Healthcare Center (Posyandu) in working area of Padang Serai Public Health Center (Puskesmas) of Bengkulu City. Methods: this study was conducted in June, 2016. The type of the study was Analytical Survey and the design was Cross Sectional. Sample was under five children aged 0-59 months (stunted and non-stunted) who visited the Integrated Healthcare Center in working area of Padang Serai Public Health Center of Bengkulu City with their mothers. The sampling technique was Accidental Sampling and the sample total was 92 under five children. The data were primary and secondary data. The primary data were length or height, age of children, and family characteristics (education and knowledge of mothers, number of family, income rate of household heads). The secondary data was collected from Health Department and Integrated Healthcare Center. The data was analyzed with univariate and bivariate analysis. Bivariate analysis used Chi-Square (χ2) test. Results: The prevalence of stunting incidence was 27.17%, no relationship between family characteristics [height of mother (p=0.054), education of mother (p=0.857), knowledge of mother (p=1.000), total of family members (p=0.934), and income rate of household head (p=1.000)] with stunting incidence of under five children who visited the Integrated Healthcare Center in working area of Padang Serai Public Health Center of Bengkulu City.Conclusion: Padang Serai Public Health Center should be able to overcome the stunting problem by doing more intensive nutrition program for the fertile women, pregnant, and lactating women, under five children, and also socialization of the nutritional status of stunting to the community. Keywords: Family Characteristics, Stunting, Under Five Children.

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Skaret, Claudine, Else Lykkeslet y Trude Fløystad Eines. "Fagkunnskap på godt og vondt - helsepersonell som pårørende til egne alvorlig syke barn på sykehus, en kvalitativ studie". Nordisk tidsskrift for helseforskning 16, n.º 1 (28 de enero de 2020): 15. http://dx.doi.org/10.7557/14.4669.

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Expertise - an advantage or a hindrance? Healthcare professionals as relatives of their own critically ill children in hospital, -a qualitative study The hospitalization of children is a stressful event for parents, and it may be even worse for parents who are healthcare professionals. Scant attention has been given to this issue in the literature and by researchers. This study aim to describe how a small group of health professionals experience the hospitalization of their child, in critically ill cases. The data are based on a qualitative design, using depth interviews with three nurses and a doctor. The interviews were analyzed using a thematic content approach. The findings show how the informants experience role conflicts, and social and psychological difficulties as relatives. This article highlights the importance of how health care professionals interact and support health professionals as relatives for their own children hospitalized.

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Shah, Anita N., Katherine A. Auger, Heidi J. Sucharew, Colleen Mangeot, Kelsey Childress, Juianne Haney, Samir S. Shah, Jeffrey M. Simmons y Andrew F. Beck. "Effect of Parental Adverse Childhood Experiences and Resilience on a Child’s Healthcare Reutilization". Journal of Hospital Medicine 15, n.º 11 (20 de mayo de 2020): 645–51. http://dx.doi.org/10.12788/jhm.3396.

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BACKGROUND: Adverse childhood experiences (ACEs) are associated with poor health outcomes in adults. Resilience may mitigate this effect. There is limited evidence regarding how parents’ ACEs and resilience may be associated with their children’s health outcomes. OBJECTIVE: To determine the association of parental ACEs and resilience with their child’s risk of unanticipated healthcare reutilization. DESIGN, SETTING, AND PARTICIPANTS: We conducted a prospective cohort study (August 2015 to October 2016) at a tertiary, freestanding pediatric medical center in Cincinnati, Ohio. Eligible participants were English-speaking parents of children hospitalized on a Hospital Medicine or Complex Services team. A total of 1,320 parents of hospitalized children completed both the ACE questionnaire and the Brief Resilience Scale Survey. EXPOSURE: Number of ACEs and Brief Resilience Scale Score among parents. MAIN OUTCOMES: Unanticipated reutilization by children, defined as returning to the emergency room, urgent care, or being readmitted to the hospital within 30 days of hospital discharge. RESULTS: In adjusted analyses, children of parents with 4 or more ACEs had 1.69-times higher odds (95% Confidence Interval 1.11-2.60) of unanticipated reutilization after an index hospitalization, compared with children of parents with no ACEs. Resilience was not significantly associated with reutilization. CONCLUSION: Parental history of ACEs is strongly associated with higher odds of their child having unanticipated healthcare reutilization after a hospital discharge, highlighting an intergenerational effect. Screening may be an important tool for outcome prediction and intervention guidance following pediatric hospitalization.

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Ventura, Renato Nabas, Rosana Fiorini Puccini, Nilza Nunes da Silva, Edina Mariko Koga da Silva y Eleonora Menicucci de Oliveira. "The expression of vulnerability through infant mortality in the municipality of Embu". Sao Paulo Medical Journal 126, n.º 5 (septiembre de 2008): 262–68. http://dx.doi.org/10.1590/s1516-31802008000500004.

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CONTEXT AND OBJECTIVE: Infant mortality expresses a set of living, working and healthcare access conditions and opens up possibilities for adopting interventions to expand equity in healthcare. This study aimed to investigate vulnerability and the consequent differences in access to health services and occurrences of deaths among infants under one year of age in the municipality of Embu. DESIGN AND SETTING: This was a descriptive study in the municipality of Embu. METHODS: Primary data were collected through interviews with the families of children living in the municipality of Embu who died in the years 1996 and 1997 before reaching one year of age. Secondary data were obtained from death certificates. The variables collected related to living conditions, income, occupation, prenatal care, delivery and the healthcare provided for children. These data were compared with the results obtained from a study carried out in 1996. RESULTS: Statistically significant differences were found with regard to income, working without a formal employment contract and access to private health plans among the families of the children who died. There were also differences in access to and quality of prenatal care, frequency of low birth weight and neonatal intercurrences. CONCLUSIONS: The employment/unemployment situation was decisive in determining the degree of family stability and vulnerability to the occurrence of infant deaths, in addition to the conditions of access to and quality of healthcare services.

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Hillier, Ashleigh, Monica Galizzi y Kianna Ferrante. "Healthcare experiences of young adults with autism spectrum disorder". Advances in Autism 3, n.º 4 (2 de octubre de 2017): 206–19. http://dx.doi.org/10.1108/aia-06-2017-0014.

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Purpose Characteristic challenges that define autism spectrum disorder (ASD), coupled with comorbid conditions and poor communication with providers, can lead to inadequate healthcare. The majority of previous work has focused on children. The purpose of this paper is to examine the healthcare experiences of young adults with ASD within the US healthcare system. Design/methodology/approach An online questionnaire was utilized to examine: the accessibility of healthcare for those with ASD: do they make their own appointments, fill out paperwork independently, go in the examination room on their own; the quality of care they receive: what are their medical needs, how effectively can they communicate their needs, do providers understand their disability; and the outcomes of care: do they understand their recommended care, can they follow healthcare instructions accurately, are they satisfied with the care received. The authors compared responses of those with ASD (n=16) with those of parents of adults with ASD (n=50), as well as a matched comparison group of young adults without ASD (n=42) for statistical differences using the Fisher Exact test. The authors also asked parents about their time costs of assisting their adult children through the healthcare process. Findings The results suggest that those with ASD overestimated their ability to manage their healthcare needs, felt more positively about the healthcare they received than was warranted, and were significantly less independent in managing their healthcare than their peers. Parents experienced losses and costs in terms of lost productivity, household work, and personal time. Originality/value This study furthers the understanding of the healthcare experiences of young adults with ASD which is crucial to dissecting problems which hamper access to quality care.

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Husna Yunardi, Dalila, Rahmad Dawood, Maya Fitria y Rini Deviani. "Design and testing booking application for private doctors’ practices to support disaster management". E3S Web of Conferences 340 (2022): 02010. http://dx.doi.org/10.1051/e3sconf/202234002010.

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During the pandemic or natural disaster, people will be dispersed and locked down in their own homes or crisis centres. During these times, people are still in need of access to healthcare. While general healthcare would be provided by the government during these times, certain people within the population will need access to specialised doctors, especially children, the elderly and people who have prior or long-term diseases. During a disaster, people may not have access to these services. Therefore, a simple technology that lets them book an appointment with these specialised doctors will be designed in this research. This booking application, will be able to back up the general healthcare when it is overwhelmed, especially during a disaster. This research was carried out using qualitative research. The data collection was conducted using interview and observation. These primary data are then coded according to the general themes. The data is then used to create a usable design for the booking application prototype, using User-Centred Design as its method. After the prototype was created successfully, it was then tested for its usability with its potential users. 6 people from 3 user groups agreed to be respondents for the usability testing. Using think aloud protocols, it was found that on average 4 out of 6 people found the prototype usable and suitable for their jobs.

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Nicholson, Emma, Edel Doherty, Suja Somanadhan, Suzanne Guerin, James Schreiber, Gerard Bury, Thilo Kroll, Meredith Raley y Eilish McAuliffe. "Health inequities in unscheduled healthcare for children with intellectual disabilities in Ireland: a study protocol". HRB Open Research 3 (23 de enero de 2020): 3. http://dx.doi.org/10.12688/hrbopenres.12973.1.

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Background: Health inequities for children with intellectual disabilities (ID) are prevalent within different health systems, and children with ID have shorter life expectancies than the general population, higher mortality rates before the age of 17 and have a greater risk of potentially preventable hospitalisations. A health systems approach to research in this area provides a useful means through which research can inform policy and practice to ensure people with ID receive equitable healthcare; however, there is a paucity of evidence regarding how to address differences that have been described in the literature to date. The overall aim of this research is to establish the extent of health inequities for children with ID in Ireland compared to children without ID with respect to their utilisation of primary care and rates of hospitalisation, and to gain a better understanding of what influences utilisation of primary care and ED services in this population. Methods and analysis: The design of this research adopts a mixed-methods approach: statistical analysis of health data to determine the extent of health inequities in relation to healthcare utilisation; discrete choice experiments to explore General Practitioners’ decision making and parental preferences for optimal care; and concept mapping to develop consensus between stakeholders on how to address current healthcare inequities. Discussion: By applying a systems lens to the issue of health inequities for children with ID, the research hopes to gain a thorough understanding of the varying components that can contribute to the maintenance of such healthcare inequities. A key output from the research will be a set of feasible solutions and interventions that can address health inequities for this population.

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Nicholson, Emma, Edel Doherty, Suja Somanadhan, Suzanne Guerin, James Schreiber, Gerard Bury, Thilo Kroll, Meredith Raley y Eilish McAuliffe. "Health inequities in unscheduled healthcare for children with intellectual disabilities in Ireland: a study protocol". HRB Open Research 3 (16 de julio de 2020): 3. http://dx.doi.org/10.12688/hrbopenres.12973.2.

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Background: Health inequities for children with intellectual disabilities are prevalent within different health systems, and children with intellectual disabilites have shorter life expectancies than the general population, higher mortality rates before the age of 17 and have a greater risk of potentially preventable hospitalisations. A health systems approach to research in this area provides a useful means through which research can inform policy and practice to ensure people with intellectual disabilities receive equitable healthcare; however, there is a paucity of evidence regarding how to address differences that have been described in the literature to date. The overall aim of this research is to establish the extent of health inequities for children with intellectual disabilities in Ireland compared to children without intellectual disabilities with respect to their utilisation of primary care and rates of hospitalisation, and to gain a better understanding of what influences utilisation of primary care and emergency department services in this population. Methods and analysis: The design of this research adopts a multi-methods approach: statistical analysis of health data to determine the extent of health inequities in relation to healthcare utilisation; discrete choice experiments to explore General Practitioners’ decision making and parental preferences for optimal care; and concept mapping to develop consensus between stakeholders on how to address current healthcare inequities. Discussion: By applying a systems lens to the issue of health inequities for children with intellectual disabilities, the research hopes to gain a thorough understanding of the varying components that can contribute to the maintenance of such healthcare inequities. A key output from the research will be a set of feasible solutions and interventions that can address health inequities for this population.

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Gerlach, Alison, Meghan Sangster, Vandna Sinha y First Nations Health Consortium. "Insights from a Jordan’s Principle Child First Initiative in Alberta". International Journal of Indigenous Health 15, n.º 1 (5 de noviembre de 2020): 21–33. http://dx.doi.org/10.32799/ijih.v15i1.33991.

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In 2016 Canada was ordered to implement Jordan’s Principle by the Canadian Human Rights Tribunal. In response to the order Canada created the Child First Initiative to provide federal funding for provincial and territorial organizations supporting First Nation’s children’s health, education, and social service needs, including service coordination. In the shifting national landscape of Child First Initiative funding, there is a lack of evidence on how pediatric healthcare services are addressing the serious health and healthcare inequities experienced by many First Nations children. This paper describes the implementation of a Child First Initiative by the First Nations Health Consortium in the Alberta region, and research findings that provide insights into the complexity and challenges of advancing First Nations children’s health and health equity within the current federal Child First Initiative mandate in this province. This paper highlights the need for transformative pediatric healthcare approaches that expand beyond an individual and demand-driven system and orient towards practices and policies that are socially-responsive. Also, that First Nations leaders and Jordan’s Principle initiatives play a leading role in the design and delivery of all pediatric healthcare services with First Nation communities, families and children across Canada.

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Abebe, Ephrem, Sarah Wiehe y Richard J. Holden. "11384 Medication Use Safety During Care Transitions for Children with Medical Complexity". Journal of Clinical and Translational Science 5, s1 (marzo de 2021): 133. http://dx.doi.org/10.1017/cts.2021.740.

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ABSTRACT IMPACT: This study will generate preliminary data to address a critical, care transition-related patient safety gap involving medication use among children with medical complexity. OBJECTIVES/GOALS: The objectives of this study are: (1) to understand care transition-related medication safety risks for children with medical complexity (CMC), and (2) through a participatory, human centered design (PD) approach, to develop an early prototype intervention to address identified safety risks. METHODS/STUDY POPULATION: The study population includes children with medical complexity (CMC), a medically fragile pediatric population with intensive healthcare needs. CMC rely on multiple and complex medication regimens and/or medical devices for optimal functioning. Parents of CMC report multiple unmet healthcare needs. For Aim 1, we will conduct observations and interviews with ˜15 clinicians as well as semi-structured interviews with ˜30 family caregivers during three care transition experiences: from Cardiac ICU to home, Neonatal ICU to home, and those between primary care/specialty clinic to home. For Aim 2, we will conduct participatory design sessions with up to 5 participants (separately for clinicians and family caregivers) from each of the three care transition settings to co-design a prototype intervention. RESULTS/ANTICIPATED RESULTS: The study is currently recruiting family caregivers of CMC for aim 1 research activities, with interviews planned to be completed in February/March 2021. Transcribed interviews will be used to inform development of patient journey maps. A patient journey map helps to visually depict healthcare services through the patient and family lens, and highlights important ‘touch points’ along the patient journey (e.g., decisions, encounters, constraints, emotional states, etc.) that shape the patient and family experience. The journey map will distill findings from qualitative data and generate a concise visual story focused on the medication use experience of CMC as they transition between the hospital and their home. Individual journey maps will also be combined to generate a consolidated journey map. DISCUSSION/SIGNIFICANCE OF FINDINGS: An-in-depth understanding of medication safety risks unique to the context of CMC care would be essential to develop interventions that are useful, scalable, and sustainable. This is even more important because current interventions are primarily adopted from adult care settings with mixed outcomes.

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Ramadhani, Glabella Ersyara, Ahmad Farkhan y Leny Pramesti. "THE DESIGN APPLICATION OF PHYSICAL OUTCOME’S THEORY ON THE HOSPITAL OF MOTHER AND CHILD IN SURAKARTA". ARSITEKTURA 16, n.º 1 (30 de abril de 2018): 39. http://dx.doi.org/10.20961/arst.v16i1.17236.

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<em>Women and Children Hospital is an useful healthcare facility to improve the health of Indonesian people especially for women, mothers and children. The lack of adequate health facilities in Indonesia for mothers and children, especially in the city of Solo, makes the number of health cases concerning them are still poorly handled and thorough. Therefore, it needs a special health facility that handles the problem, namely Women and Children Hospital with concept that can solve the problem. The appropriate theory for solving the problem is the Physical Outcome Theory (derived from the concept of Healing Environment).That theory serves to help patients in the hospital, to feel comfortable and safe to be treated in it. The research method used is applied research, through the exploration of initial ideas and data collection which then concluded to be a guide in the design analysis. The results of Physical Outcome Theory implementation in buildings, realized through the processing siteplan design, building facade, interiors, and exteriors.</em>

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Heacock, Raquel M., Joseph J. Montano y Jill E. Preminger. "Adult Children’s Perspectives on Their Role in Their Parent’s Hearing Healthcare Processes". Journal of the American Academy of Audiology 30, n.º 10 (noviembre de 2019): 871–82. http://dx.doi.org/10.3766/jaaa.17124.

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AbstractCommunication partners play an important role in the hearing healthcare (HHC) process of the person with hearing impairment (HI). However, present research focuses mainly on the role of the spouse; the role of the adult child is often overlooked or understated.The aim of the study was to describe the role of the adult child in the HHC process of a parent with HI.Using a qualitative study design, participants described their role in their parents’ HHC process and the impact of a parent’s HI on their relationship and communication in individual semi-structured interviews.Twelve adult children of ten parents with HI participated; two sets of siblings were included to gain different perspectives on the HHC process within the same family.Thematic analysis, a qualitative method to explore participant’s perceptions and viewpoints, was used as the method of analysis.The superordinate theme discussed most frequently by participants, communication management, was bolstered by three ideas or pillars: facilitating HHC, communication strategies, and encouraging hearing aid use. Adult children saw themselves as advocates or supporters of their parent’s HHC by taking an ongoing and active role in promoting successful communication rather than a role in directing their parent’s HHC actions. Within each pillar of communication management, participants’ perceptions and actions were modulated by the varying levels of effort and a desire to ask questions to better understand how to help their parent, which in turn influenced their awareness of the HI and HHC options, often resulting in the adult child putting forth new effort.Whereas the patient journey is often presented to the patient as a linear process, the adult children instead viewed the process of communication management as an ongoing and continuous cycle. The audiologist should be encouraged to involve adult children in the HHC process, as adult children play an important role in everyday communication management.

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Groba, Betania, Nereida Canosa y Patricia Concheiro-Moscoso. "Guidelines to Support Graphical User Interface Design for Children with Autism Spectrum Disorder: An Interdisciplinary Approach". Proceedings 2, n.º 18 (17 de septiembre de 2018): 1177. http://dx.doi.org/10.3390/proceedings2181177.

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The study aims to describe the guidelines to support user interface design for develop technology centered in the specific learning style, abilities and needs of children with Autism Spectrum Disorder (ASD). This research study describes the conclusions drawn following a process of interactive design of software, ASD Module, In-TIC PC. Four groups of participants were involved in the process: specialists with experience in the intervention with people with ASD, specialists with experience in the development and design of technology for people with disability, children with ASD and their families (n = 39). The techniques used to formalize the collection of information from different groups of participants were observation, interview, group discussions and a questionnaire. The results of the study target the development of a design guide that includes the evidence, the basic ideas and suggestions deduced from the design and development process of the ASD Module. This translates into a list of rules with suggestions to consider in the design and adaptation of technology for children with ASD. These guidelines of interface design provide useful information for researchers, developers, social and healthcare professionals and families, with the aim of offering alternatives for children with ASD and facilitating the understanding of daily life.

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Basargekar, Prema, Sushmita Priyadarshini, Shubham Seth y Vaibhav Ganjoo. "Impact of Socio-economic Factors in Reducing Malnutrition among Children: A comparative study of India, Bangladesh and Sri Lanka". Asia Pacific Journal of Health Management 16, n.º 3 (29 de septiembre de 2021): 21–28. http://dx.doi.org/10.24083/apjhm.v16i3.959.

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Objective: To assess the impact of economic and gender factors on malnutrition among children below 5 years age by making a comparative study between India, Bangladesh and Sri Lanka Design and setting: The study uses data and information on economic and gender status parameters taken from the secondary sources for three South Asian Countries between the years 2000 to 2018. The study uses ANOVA, Post Hoc test and Fixed Effects Panel Regression analysis to arrive at the conclusions. Results: Comparative analysis between the three countries shows that the extent of malnutrition among children is lowest in Sri Lanka and highest in India. The study finds that economic factors such as domestic government’s expenditure of healthcare as percentage of total health expenditure and gender factors measured in terms of female labour force participation, and school enrolment of girls at secondary level significantly impact the level of malnutrition among children. Conclusion: Malnutrition among children is a complex challenge which cannot be solved by emphasizing on only economic growth. Policies emphasising on gender parity and empowerment integrated in healthcare policies will positively impact nutritional level of children.

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Wiener, R. Constance, Christopher Waters, Ruchi Bhandari y Alcinda K. Trickett Shockey. "Healthcare Utilization and Morbidity among Adolescents with ADHD in Children Aged 11-17 Years, NHIS, 2017". Child Development Research 2019 (25 de marzo de 2019): 1–10. http://dx.doi.org/10.1155/2019/4047395.

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Purpose. Children with ADHD have known behaviors of hyperactivity and impulsivity which may result in adverse outcomes. The purpose of this study is to examine the association of serious adverse outcomes (emergency department visits within the previous year) in preadolescents and adolescents with ADHD as compared with preadolescents and adolescents without ADHD. Method. The researchers conducted a cross-sectional, secondary data analysis of National Health Interview Survey (NHIS) 2017 data concerning 2,965 children (>11 to 17 years). The NHIS data resulted from face-to-face interviews of a household member selected from a multistage area probability design representing households in the US. Data analyses for this study included Chi-square bivariate analyses and logistic regression analyses. Results. There were 13.2% of children in the sample who had ADHD. Children with ADHD were more likely to be male and non-Hispanic white. They were also more likely to have one or more additional disease or condition excluding ADHD. In adjusted logistic regression analysis on emergency department utilization by ADHD status, the adjusted odds ratio was 1.93 (95%CI: 1.35, 2.74; p = 0.0003) for preadolescents and adolescents with ADHD as compared with preadolescents and adolescents without ADHD. Conclusion. Children with ADHD were more likely to have emergency department utilization than children without ADHD. Preventive medical visits were similar between preadolescent and adolescent children with and without ADHD. Characteristics associated with ADHD may explain the increased need for emergent care. Developing interventions for children with ADHD may decrease emergency department utilization.

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Peña-Longobardo, Luz María, Isaac Aranda-Reneo, Juan Oliva-Moreno, Svenja Litzkendorf, Isabelle Durand-Zaleski, Eduardo Tizzano y Julio López-Bastida. "The Economic Impact and Health-Related Quality of Life of Spinal Muscular Atrophy. An Analysis across Europe". International Journal of Environmental Research and Public Health 17, n.º 16 (5 de agosto de 2020): 5640. http://dx.doi.org/10.3390/ijerph17165640.

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Background: this study aimed to estimate the economic impact and health-related quality of life (HRQOL) of patients with spinal muscular atrophy (SMA) in three European countries. It was used a cross-sectional study carried out in France, Germany, and the United Kingdom. Data were collected from July 2015 to November 2015. Healthcare costs (hospitalizations, emergencies, medical tests, drugs used, visits to general practitioners (GPs) and specialists, medical material and healthcare transport), and non-healthcare costs (social services and informal care) were identified and valued. EuroQol instruments, the Zarit interview, and the Barthel Index were also used to reflect the burden and the social impact of the disease beyond the cost of healthcare. Results: we included 86 children with SMA, 26.7% of them had Type I, and 73.3% Type II or III. The annual average cost associated with SMA reaches €54,295 in the UK, €32,042 in France and €51,983 in Germany. The direct non-healthcare costs ranged between 79–86% of the total cost and the informal care costs were the main component of these costs. Additionally, people suffering from this disease have a very low health-related quality of life, and there are large differences between countries. Conclusions: SMA has a high socioeconomic impact in terms of healthcare and social costs. It was also observed that the HRQOL of affected children was extremely reduced. The figures shown in this study may help to design more efficient and equitable policies, with special emphasis on the support provided to the families or on non-healthcare aid.

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