Parents' experiences of support during and after their child's diagnosis of meningococcal disease

Abstract

Aim: 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.

Conclusion: 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.