This study explored parents' experiences of care by paediatricians in the time leading up to and including diagnostic disclosure of a life-limiting condition in their child.
Research methods: Qualitative exploration using in depth interviews with a purposive sample of 30 families whose child was diagnosed with a life-limiting condition.
Results: Parents' stories centred upon their need to have their concerns and needs as parents validated by paediatricians. Demonstrable qualitative differences were shown to exist between the sensitive and insensitive clinical practices of paediatricians. Parents' stories identify the need for clinical practice to be based upon a humanistic approach to care. These also identify how sensitive paediatricians achieved this ideal through meeting the 'double obligation' of combining technical skills with an understanding of their needs as parents.