title: Parents' experiences of support during and after their child's diagnosis of meningococcal disease.
abstract: OBJECTIVE
  To understand parents'/carers' experiences of support received following their child's diagnosis of invasive meningococcal serogroup B disease (MenB).
  
  
  METHODS
  Structured interviews with parents/carers of 244 survivors of MenB disease in childhood, drawn from a population-based case-control study.
  
  
  RESULTS
  Responses indicated that optimal support should encompass the whole treatment pathway, beginning with fast and accurate recognition of MenB by clinicians, followed by the provision of information about the symptoms and possible sequelae of MenB, better communication about the treatment process and disease progression and greater follow-up care.
  
  
  CONCLUSIONS
  Parents' experience of support following their child's diagnosis of MenB could be significantly enhanced through better education and enhanced knowledge in health care professionals, improved access to information about short- and long-term sequelae and easier access to follow-up support and advice. Much of the data generated pertained to situations and processes common to most serious illnesses occurring in children and therefore it is likely that these findings pose wider questions about support and communication in paediatrics.
authors.affiliation: General and Adolescent Paediatrics Unit, UCL Institute of Child Health, London, UK.
authors.forename: Faye
authors.initials: F
authors.lastname: Sweeney
authors.forename: Russell M
authors.initials: RM
authors.lastname: Viner
authors.forename: Robert
authors.initials: R
authors.lastname: Booy
authors.forename: Deborah
authors.initials: D
authors.lastname: Christie
mesh_terms: D000293:Adolescent; D002648:Child; D015331:Cohort Studies; D005260:Female; D058015:Health Communication; D006266:Health Education / Q000458:organization & administration; D006801:Humans; D008297:Male; D008589:Meningococcal Infections / Q000175:diagnosis* / Q000523:psychology / Q000628:therapy*; D020380:Needs Assessment; D038541:Neisseria meningitidis, Serogroup B; D010290:Parents / Q000193:education / Q000523:psychology*; D011368:Professional-Family Relations; D012944:Social Support; D006113:United Kingdom