This article presents an original study commissioned by the UK charity, Together for Short Lives which explored children and young people up to 25 years of age with life-threatening/limiting conditions and their families. Using Appreciative Inquiry and framework analysis, qualitative work sought to explore perceived met and unmet needs of services and care. Fifty-one families were interviewed from one UK area, 18 of which were children/young people up to 25 years old. Findings indicated that children and their families felt medical/nursing needs were well met but provision was needed for broader financial, social and emotional support alongside more responsive specialist therapies.
Bibliographical note“NOTICE: this is the author’s version of a work that was accepted for publication in Journal of Pediatric Nursing. Changes resulting from the publishing process, such as peer review, editing, corrections, structural formatting, and other quality control mechanisms may not be reflected in this document. Changes may have been made to this work since it was submitted for publication. A definitive version was subsequently published in Journal of Pediatric Nursing [in press] DOI 10.1016/j.pedn.2014.09.007"
- Life limiting/life threatening condition
- Complex/palliative care
- Children/young people/families
- Met/unmet needs