In families affected by an inherited genetic condition, parents face a difficult task of having to communicate genetic risk information to their children. A systematic review of all major health and medical research databases was undertaken using current guidelines to identify original relevant research papers from 1980 to 2007, which explore the issues surrounding parents and their children's communication about inherited genetic risk. A total of 9698 abstracts were found of which 158 research papers were reviewed as potentially relevant. A final 17 papers were identified which met predefined inclusion and exclusion criteria. Using a meta-ethnographic approach, all identified studies' findings were analysed as primary data sources by three researchers, who independently identified the key concepts. A high level of congruence emerged between researchers, and agreed concepts were used to examine similarities and differences between papers. The findings informed the development of a narrative framework exploring the issues that related to parents' explanations of inherited genetic risk to their children, the reasons for sharing information, children's understanding of parents' explanations, the emotions evoked for family members and the support and guidance received from health professionals. Providing information, checking understanding, and explaining and managing the emotional feelings that arise were integral to supporting children's coping with genetic risk information. However, many parents struggled with one or more of these components and required more support specific to the child's developmental stage, and family members' transition of readjustment to the impact of the genetic condition.
Little is known about how parents explain to their children their risk of inheriting a gene that may cause disease in the child or in the child's future progeny. This study explored how genetic risk information is shared between family members and the factors affecting it, to ascertain the implications for children, young people and their parents to inform future service development and provision. A volunteer group of parents, children (8-11 years) and young people (12+ years) in families affected by or at risk of one of six inherited genetic conditions was interviewed. The semi-structured interviews explored the roles of family members, the language used and the self-reported psychological outcomes in a discussion on genetic risk information. The findings were analysed using grounded theory. A total of 33 families participated, which included 79 individuals. Parents often found discussing genetic risk information very difficult and emotionally painful. Discussions were not usually planned and often a major event prompted parents to finally explain genetic risks to their children; however, children usually preferred to learn about the genetic condition gradually throughout childhood. Parents identified a number of challenges they faced related to talking to children, and many thought health professionals should provide more advice to assist them in providing developmentally appropriate information. We therefore conclude that greater emphasis is required in supporting parents and children in discussing genetic risk information throughout their child's development. Open communication about genetic risks throughout childhood seemed to help children and parents cope better and come to terms with the implications of the genetic condition.
A combination of vital signs can be used to differentiate children with serious infections from those with less serious infections in a paediatric assessment unit and has comparable sensitivity to more complicated triage systems. The diagnostic value of combined vital signs and the NICE traffic light system remains to be determined in populations where the prevalence of severe illness is much lower.
This paper outlines how art-based techniques and activities can applied for use in consultation work and/or research projects with children and young people. First, the concept of what constitutes an art-based activity and how it might be used in consultation and/or research is explored. Following this, three art-based activities of using photographs, drawings/posters or collages and mapping techniques are considered in terms of application to field work. Literature and work undertaken by the author is drawn upon. Critical discussion of using art-based techniques includes pragmatic discussion relating to entering the field, time, resources, collecting the data, settings and feedback.
Recently, increased recognition has been attributed to the requirement to include the views of child patients in the planning of new health care services so that contemporary buildings can be designed to enhance future experience. This is important, especially since the voices of young children are so often under-represented or represented through adult proxies. The purpose of this article is to share young children's perspectives of what constitutes ideal physical design features for hospital-built environments. Using a participatory art-based approach, data were collected from 55 children (aged five-eight years) across three children's hospitals in Ireland. Emergent findings revealed three broad themes: personal space, physical environment and access. This study is important for nurses, clinicians and environmental designers because it outlines what a supportive child health care environment should constitute. Hospital environments need to be constructed not just to be child friendly, but to also respect children's right to dignity, privacy, family support and self-control.
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