'Pizza, patients and points of view': Involving young people in the design of a post registration module entitled the adolescent with cancer.

UNLABELLED: Health policy and education directives emphasise the need to involve service users and carers in healthcare, from service design and delivery to the education of healthcare professionals. This paper describes a pilot project aimed at eliciting teenagers and young people with cancer views in relation to the content of a continuing professional development module entitled 'adolescents with cancer'. Seven young people participated in the project. The project design was based on the PARTICIPATION - spice it up [Shephard, C., Treseder, P., 2002. PARTICIPATION: spice it up! Dynamix, Swansea] framework, which aims to ensure effective and appropriate involvement of service users and carers. 'Post-it ideas storm' 'diamond ranking' and 'dot voting' were used to elicit the young people's views. The teenagers and young people could clearly articulate the qualities they felt nurses should have when caring for adolescents with cancer. They also identified topics they felt were important to include in the module, with an understanding of, and using, humour being given the highest priority. This was not originally included in the module timetable but as a direct result of consulting with the young people changes were made to reflect their views.

'They did not have a word': the parental quest to locate a 'true sex' for their intersex children.

Given the paucity of research in this area, the primary aim of this study was to explore how parents of infants with unclear sex at birth made sense of 'intersex'. Qualitative methods were used (semi-structured interviews, interpretative phenomenological analysis) with 10 parents to generate pertinent themes and provide ideas for further research. Our analysis highlights the fundamental shock engendered by the uncertain sex status of children, and documents parental struggles to negotiate a coherent sex identity for their children. Findings are discussed in light of the rigid two-sex system which pervades medicine and everyday life, and we argue that greater understanding of the complexity of sex and gender is required in order to facilitate better service provision and, ultimately, greater informed consent and parental participation regarding decisions about their children's status.