Internet Use by Parents of Children With Rare Conditions: Findings From a Study on Parents' Web Information Needs.

BACKGROUND: Parents 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. OBJECTIVE: To (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. METHODS: Data 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. RESULTS: Parents 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. CONCLUSIONS: This 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.

An evaluation of an interprofessional master's level programme in children's palliative care: The students' evaluation.

In 2010/12 an innovative children's palliative care interprofessional educational project funded by the Irish Hospice Foundation was undertaken in a University faculty (Trinity College Dublin). This initiative responded to international educational recommendations to meet the palliative care needs of children. The project involved the development and delivery of 3 standalone modules at Master's level and a substantive research evaluation of the project to examine stakeholders and students perspectives to provide an insight into their experiences and to gather data for future developments. The research evaluation was conducted in two parts, part one sought students' evaluation and part two sought stakeholders', curriculum developers and lecturers' feedback. This paper reports the students' evaluation. Findings indicate that students perceived undertaking the modules provided them with the opportunity for improved interprofessional learning and they found modular content and assessment challenging. They also found the modules met their educational needs and also promoted an awareness of interprofessional education and the collaborative teamwork involved in children's palliative care. These students already experienced in children's palliative care indicated that those teaching on programmes at this level need expertise and programme time needs to be available for sharing experiences and for consolidation of learning.

Awareness and minimisation of systematic bias in research.

A 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.

Myths and facts about safe patient handling in rehabilitation.

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.

The multifaceted influence of gender in career progress in nursing.

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.

Questioning: a tool in the nurse educator's kit.

Effective questioning is one of the most important teaching techniques and plays a crucial role in creating an effective learning environment. Yet, in nurse education little has been written about this technique or its importance. Most literature refers to the need for lecturers to be skilled in questioning, but less is written about how to develop this essential technique. Being skilled in questioning is an important fundamental step towards becoming an effective lecturer. Developing the skills necessary to help students draw on and apply acquired knowledge in new, unique situations requires the skilled use of questioning. Most experienced lecturers use both written and verbal questioning, but evidence suggests that the majority of their questioning is posed at lower cognitive levels of description. Quality teaching requires students to be engaged with the content of learning tasks designed to reach understanding. Using questioning appropriately facilitates the learning process by requiring the student to participate in the process and to achieve higher comprehension skills by acquiring deep, elaborate understanding of the subject. To acquire and develop this skill, the lecturer is required to understand questioning, to select the tool appropriately and to use questions that are varied, planned, appropriate and humanely posed. The functions of questioning, types of questions and the key skills required for the effective use of this teaching strategy are outlined in this article.

The glass ceiling in Irish healthcare: a nursing perspective.

PURPOSE: The purpose of this study is to describe and explore from the perspectives of top-level nurses holding the formal position of director of nursing their perceptions and interpretations of their experiences in the Irish healthcare system. DESIGN/METHODOLOGY/APPROACH: This paper presents some findings from a nation-wide study, which is qualitative in approach using grounded theory methodology. Semi-structured interviews were conducted with 50 directors of nursing representing general and psychiatric nursing. FINDINGS: The study in this paper was conducted in the context of a changing healthcare system, which emphasises the flattening of organisational pyramids. However, this study's findings indicate that, while structures might be changing, behaviours remain unaltered. In particular, the medicine nursing power base remains unchanged, while the power shift between nursing and general management continues to widen in favour of general management. RESEARCH LIMITATIONS/IMPLICATIONS: Research in this paper shows that directors of nursing who chose to participate in this study may have different perceptions of experiences from those who chose not to participate. ORIGINALITY/VALUE: In the paper the reality is neither medicine nor general management, individually or collectively, are going to share or devolve power and influence to nursing. This study's findings indicate that nursing needs to confront this power imbalance. Nursing needs to take the first steps towards shattering the glass ceiling by really examining its own behaviours, in maintaining the status quo, in the traditional balance of power.