BackgroundParents of children with rare conditions increasingly use the Internet to source information on their child’s condition. This study reports on part of a larger study whose overall aim was to identify the Internet use by parents when seeking information on their child’s rare condition, with the specific purpose of using the findings to aid in the development of a website specifically designed to meet the parents’ needs. It presents findings on why these parents use the Internet, the information and support content they source, and the impact these resources have on their capacity to care for and manage their child’s condition.ObjectiveTo (1) ascertain parents’ general Internet usage patterns, (2) identify the nature of the information parents most frequently searched for, and (3) determine the effect the Internet-sourced information had on parents of children with rare conditions.MethodsData collection was conducted in 2 parts: Part 1 was a focus group interview (n=8) to inform the development of the questionnaire, and Part 2 was a questionnaire (Web- and paper-based). All respondents (N=128) completed the questionnaire using the Internet.ResultsParents frequently and habitually used the Internet and social media to gather information on their child’s condition. These Web-based resources provide parents with a parent-to-parent support platform that allows them to share their experiences and information with other parents, which, the respondents considered, improved their knowledge and understanding of their child’s condition. The respondents also reported that these resources positively impacted on their decision making, care, and management of their child’s condition. However, they reported receiving mixed responses when wishing to engage and share with health care professionals their Internet and social media interactions and information outcomes.ConclusionsThis study adds to the emerging body of research on the Internet use by parents of children with rare conditions to source information on their child’s condition. The evolving and ever increasing parent-to-parent support systems via social media are impacting on parents’ capacity to manage their children. Implications for practice include health care professionals’ response to this knowledge and capacity shift, and the significance of these changes when interacting with parents. The key message of this study was that parents of children with rare conditions are habitual users of the Internet to source information about their children’s conditions. Social media, especially Facebook, has an increasing role in the lives of these parents for information and support. Parents’ interest in information gathering and sharing includes a desire for shared dialogue with health care professionals.
The complex web of gender influence in the workplace results from a multifaceted interplay of factors [Walby et al. (1994) Medicine and Nursing. Sage Publications, London]. Literature reports that in nursing men's success compared with that of women is disproportionate and substantial evidence of gender-based disadvantage is found [Women in Management Review13 (1998) 184]. However, studies have not addressed the specific reasons for this and little is known of how or what influences nurses' career decisions and developments [Journal of Advanced Nursing25 (1997) 602]. Those studies which examine career developments and patterns are mainly found in the private business sector.
As the incidence of injuries associated with patient-handling tasks remains high in the rehabilitation community, interdisciplinary discussions on optimal methods for preventing injuries and ensuring good care continue. A national task force consisting of representatives from the Association of Rehabilitation Nurses, the American Physical Therapy Association, and the Veterans Health Administration identified myths that have been promulgated on both sides of the discussion, focusing especially on rehabilitation practices. The purpose of this article is to dispel these myths by using evidence-based methods. Evidence should be applied in discussions of safe patient handling, and although concern about patient outcomes is critical, there is no evidence that the use of patient-handling technology undermines rehabilitation goals and strong evidence that these practices enhance the safety of rehabilitation care providers. Further research on the impact of safe patient-handling practices on rehabilitation goals and continued communication between rehabilitation providers are recommended.
CitationAwareness and minimisation of systematic bias in research., 23 (5) Bias Awareness in Research Practice 2 AbstractA major goal of nursing and midwifery is the delivery of evidence-based practice.Consequently, it is essential for the quality and safety of patient/client care that policy makers, educators and practitioners are aware of the presence of potential systematic bias in research practice and research publications so that only sound evidence translates into practice. The main aim of this paper is to highlight the need for ongoing awareness of the potential presence of systematic bias in research practice, to explore commonly reported types of systematic bias and to report some methods that can be applied to minimise systematic bias in research.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
hi@scite.ai
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.