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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., (©Honor Nicholl, Catherine Tracey, Thelma Begley, Carole King, Aileen M Lynch. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 28.02.2017.)

Purpose: The purpose of this project was to gather parents' expertise to inform an educational leaflet for parents to share with professionals caring for children with 22q11.2 deletion syndrome (22q11.2 DS)., Design and Methods: A mixed-method design was adopted. Data were collected by one focus group interview (n = 8) and questionnaires with 92 other parents of children with 22q11.2 DS., Results: Quantitative and qualitative responses informed the development of an information leaflet., Practice Implications: Parents are well positioned to assist in development of information leaflets that can minimize "repeated storytelling" during professional encounters., (© 2014, Wiley Periodicals, Inc.)

Children with complex care needs form a diverse population with a variety of health and social care requisites in the presence of a range of complex symptoms and diagnoses. An exploratory literature review with a systematic search of the current qualitative literature was undertaken to explore parents' perceptions and evaluation of respite care services for children with complex needs. A systematic search was undertaken using a pre-defined search strategy in six databases; CINAHL, EMBASE, PsycINFO, Applied Social Sciences Index & abstracts and Web of Science. Studies were screened using inclusion criteria and eight studies were included in the review. These were analyzed using thematic analysis based on Braun and Clarke framework. Findings identified that there was a limited availability of respite care services for children with complex needs. Parents' perceived that respite was beneficial for themselves, their child and other siblings in the family. Barriers to accessing respite were also identified. It is recommended that respite services should be flexible and appropriate to the family's needs. A combination of in home and out of home services that are responsive to families' needs and are flexible would be optimal. Qualitative research is considered most suitable to obtain the views of parents of children with complex needs. Further research is recommended in this area, particularly in determining how services may improve and what the views of children using the respite services and their siblings are regarding respite. [ABSTRACT FROM AUTHOR]

The authors discuss the importance of family-centered care in the paediatric intensive care unit (PICU). Topics covered include the challenges of overcoming the physical setting and technological equipment, the occasional prevention of participation by parents in decision-making, and variations in approaches to global PICU family-centered care due to cultural beliefs. Also noted is the need to develop a shared vision of family-cemtered care based on examples of best practice.