title: 'Why does it happen like this?' Consulting with users and providers prior to an evaluation of services for children with life limiting conditions and their families.
abstract: Children with life limiting conditions and their families have complex needs. Evaluations must consider their views and perspectives to ensure care is relevant, appropriate and acceptable. We consulted with children, young people, their parents and local professionals to gain a more informed picture of issues affecting them prior to preparing a bid to evaluate services in the area. Multiple methods included focus groups, face-to-face and telephone interviews and participatory activities. Recordings and products from activities were analysed for content to identify areas of relevance and concern. An overarching theme from parents was 'Why does it happen like this?' Services did not seem designed to meet their needs. Whilst children and young people expressed ideas related to quality of environment, services and social life, professionals focused on ways of meeting the families' needs. The theme that linked families' concerns with those of professionals was 'assessing individual needs'. Two questions to be addressed by the evaluation are (1) to what extent are services designed to meet the needs of children and families and (2) to what extent are children, young people and their families consulted about what they need? Consultations with families and service providers encouraged us to continue their involvement as partners in the evaluation.
authors.affiliation: University of Central Lancashire, UK ahunt@uclan.ac.uk.
authors.forename: Anne
authors.initials: A
authors.lastname: Hunt
authors.affiliation: University of Central Lancashire, UKCoventry University, UKWarwick Medical School, UKUniversity of Central Lancashire, UKTogether for Short Lives, UK.
authors.forename: Erica
authors.initials: E
authors.lastname: Brown
authors.affiliation: Coventry University, UK.
authors.forename: Jane
authors.initials: J
authors.lastname: Coad
authors.affiliation: Warwick Medical School, UK.
authors.forename: Sophie
authors.initials: S
authors.lastname: Staniszewska
authors.affiliation: University of Central Lancashire, UKCoventry University, UKWarwick Medical School, UKUniversity of Central Lancashire, UKTogether for Short Lives, UK.
authors.forename: Suzanne
authors.initials: S
authors.lastname: Hacking
authors.affiliation: University of Central Lancashire, UK.
authors.forename: Brigit
authors.initials: B
authors.lastname: Chesworth
authors.affiliation: Together for Short Lives, UK.
authors.forename: Lizzie
authors.initials: L
authors.lastname: Chambers
mesh_terms: D000293:Adolescent; D002648:Child; D002662:Child Health Services / Q000600:supply & distribution*; D019988:Children with Disabilities / Q000534:rehabilitation*; D005190:Family; D017144:Focus Groups; D006301:Health Services Needs and Demand; D006302:Health Services Research; D006801:Humans; D007407:Interviews as Topic; D012017:Referral and Consultation
keywords: Children’s participation; family; health services research; palliative care; quality of care