Aim: To develop a simple health literacy intervention aimed at supporting informed reproductive choice among members of UK communities practising customary consanguineous marriage. Background: The contribution of 'health literacy' to reducing health inequalities and improving primary health-care efficiency is increasingly recognised. Enhancing genetic literacy has received particular attention recently. Consanguineous marriage is customarily practised among some UK minority ethnic communities and carries some increased risk of recessive genetic disorders among offspring compared with unions among unrelated partners. The need to enhance genetic literacy on this issue has been highlighted, but no national response has ensued. Instead, a range of undocumented local responses are emerging. Important knowledge gaps remain regarding how the development and implementation of culturally appropriate, effective and sustainable responses can be achieved. Methods: Our co-design approach involved active participation by local people. Initial insight generation employed six focus group discussions and 14 individual interviews to describe current understandings and information needs. A total of 11 personas (heuristic narrative portraits of community 'segments') resulted; four participatory workshops provided further understanding of: preferred information channels; feasible information conveyance; and responses to existing materials. Prototype information resources were then developed and feedback gathered via two workshops. Following further refinement, final feedback from healthcare professionals and community members ensured accuracy and appropriateness. Findings: The project demonstrated the utility of co-design for addressing an issue often considered complex and sensitive. With careful planning and orchestration, active participation by diverse community members was achieved. Key learning included: the importance of establishing trusting and respectful relationships; responding to diversity within the community; and engendering a creative and enjoyable experience. The resultant materials were heavily shaped by local involvement. Evaluative work is now needed to assess impacts on knowledge and service uptake. Longer term sustainability will depend on whether innovative community-level work is accompanied by broader strategy including investment in services and professional development.
Long Term Non-Invasive Ventilation (NIV) is increasingly common and is benefitting children with a wider range of conditions. It improves quality of life and life expectancy and reduces hospital admissions and length of stay. Children are at risk however of adverse effects caused by NIV interfaces such as skin injury, facial flattening and eye problems. The correct size interface, that is properly fitted, can decrease the risk of device related injury but it remains difficult to fit interfaces to children with particularly small, syndromic or asymmetrical face shapes. Specialist centres are producing semi-custom and fully custom-made interfaces in an attempt to improve fit and decrease device related injury. Recent advances in modern technology such as facial scanning and 3D printing are making custom made interfaces a more viable solution, but it is not yet known whether these approaches will be cost-effective and what the impact of these interfaces will be on the adverse effects of NIV.
KeywordsChildren, Long term non-invasive ventilation, Interface sleep fragmentation with daytime somnolence as well as chronic hypoxia resulting in pulmonary hypertension and cor pulmonale [4].
In order to better explore the opportunities for tangible interaction in new areas such as the home or cultural heritage sites, we used multiple rapidly-developed prototypes that take advantage of existing technology. Physical prototypes allow us to give form to ideas and to evaluate the integration of form and function, two core components of tangible interaction. We discuss potentials and pitfalls when using off-the-shelf digital devices (by embedding a device, cracking it open and building on it, or collating board and parts) through six prototypes developed in two studies. Hacking devices to materialize our ideas proved excellent for fast prototyping. Technology imposed constraints and prompted different design solutions than initially intended offering unexpected ways to engage. On the basis of this experience we outline a process and offer guidelines for the fast prototyping of tangible interactions.
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