title: Exploring the perceived met and unmet need of life-limited children, young people and families.
abstract: 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.
authors.affiliation: Centre of Children and Families Applied Research, CCFAR, Faculty of Health & Life Sciences, Richard Crossman Building, Coventry University, Coventry, UK. Electronic address: jane.coad@coventry.ac.uk.
authors.forename: Jane
authors.initials: J
authors.lastname: Coad
authors.affiliation: Centre of Children and Families Applied Research, CCFAR, Faculty of Health & Life Sciences, Richard Crossman Building, Coventry University, Coventry, UK.
authors.forename: Jasveer
authors.initials: J
authors.lastname: Kaur
authors.affiliation: Centre of Children and Families Applied Research, CCFAR, Faculty of Health & Life Sciences, Richard Crossman Building, Coventry University, Coventry, UK.
authors.forename: Nicky
authors.initials: N
authors.lastname: Ashley
authors.affiliation: Brook Building, School of Health, University of Central Lancashire, Preston, UK.
authors.forename: Christopher
authors.initials: C
authors.lastname: Owens
authors.affiliation: Brook Building, School of Health, University of Central Lancashire, Preston, UK.
authors.forename: Anne
authors.initials: A
authors.lastname: Hunt
authors.affiliation: Together for Short Lives, Bristol, UK.
authors.forename: Lizzie
authors.initials: L
authors.lastname: Chambers
authors.affiliation: Centre of Children and Families Applied Research, CCFAR, Faculty of Health & Life Sciences, Richard Crossman Building, Coventry University, Coventry, UK.
authors.forename: Erica
authors.initials: E
authors.lastname: Brown
mesh_terms: D000293:Adolescent; D000328:Adult; D000367:Age Factors; D002648:Child; D002908:Chronic Disease; D016638:Critical Illness / Q000401:mortality* / Q000628:therapy; D003695:Delivery of Health Care / Q000706:statistics & numerical data*; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008017:Life Expectancy; D008297:Male; D020380:Needs Assessment; D010166:Palliative Care / Q000379:methods*; D010465:Perception; D035583:Rare Diseases; D012189:Retrospective Studies; D018570:Risk Assessment; D016019:Survival Analysis; D006113:United Kingdom
keywords: Children/young people/families; Complex/palliative care; Life limiting/life threatening condition; Met/unmet needs