The health, social and educational needs of children who have survived meningitis and septicaemia: the parents’ perspective

BMC Public Health

Caroline L Trotter²  Matthew Hickman¹  Suzanne Audrey¹  Linda Glennie³  Laura J Clark³ 

[1] School of Social and Community Medicine, University of Bristol, Bristol, UK;Now at: Disease Dynamics Unit, Department of Veterinary Medicine, University of Cambridge, Madingley Road, Cambridge CB3 0ES, UK;Meningitis Research Foundation, Thornbury, Bristol, UK

关键词: Qualitative;    Survey;    Aftercare;    Sequelae;    Septicaemia;    Meningitis;   

Others  :  1161668
DOI  :  10.1186/1471-2458-13-954

 received in 2013-01-03, accepted in 2013-10-07,  发布年份 2013

【 摘 要 】

Background

Survivors of bacterial meningitis and septicaemia can experience a range of after-effects. There is little published research on the needs and provision of aftercare for children surviving bacterial meningitis and septicaemia.

Methods

Mixed methods study employing a survey and follow-up interviews with a sample of survey participants recruited from Meningitis Research Foundation’s member database and social media.

Results

Of 194 eligible survey respondents, 77% reported at least moderate short-term after-effects, and 57% a need for aftercare or support. Most parents reported that their child received a hearing test (98%) and follow-up appointment with a paediatrician (66%). Psychosocial after-effects were most common and the greatest need was for educational support. About half of participants felt their children’s needs for aftercare were met. We conducted interviews with 18 parents. Findings suggest access could be limited by: parents’ inability to navigate systems in place, child’s age, and delayed identification of sequelae. Parents felt a comprehensive explanation of possible after-effects on discharge from hospital was required, and found uncertain prognoses difficult. Good communication between professionals enabled a service tailored to the child’s needs.

Conclusions

Our study supports the NICE and SIGN guidelines and highlights areas for improvement in the aftercare of these children.

【 授权许可】

   
2013 Clark et al.; licensee BioMed Central Ltd.

【 参考文献 】

• [1]Edmond K, Clark A, Korczak VS, Sanderson C, Griffiths UK, Rudan I: Global and regional risk of disabling sequelae from bacterial meningitis: a systematic review and meta-analysis. Lancet Infect Dis 2010, 10:317-328.
• [2]Halket S, de Louvois J, Holt DE, Harvey D: Long term follow up after meningitis in infancy: behaviour of teenagers. Arch Dis Child 2003, 88:395-398.
• [3]Shears D, Nadel S, Gledhill J, Garralda E: Short term psychiatric adjustment of children and their parents following meningococcal disease. Pediatr Crit Care Med 2005, 6:39-43.
• [4]Canavese F, Krajbich JI, La Fleur BJ: Orthopaedic sequelae of childhood meningococcemia: Management considerations and outcome. J Bone Joint Surg Am 2010, 92:196-203.
• [5]Buysse CMP, Oranje AP, Zuidema E, et al.: Long-term skin scarring and orthopaedic sequelae in survivors of meningococcal septic shock. Arch Dis Child 2009, 94:381-386.
• [6]Slack R, Hawkins KC, Gilhooley L, Addison GM, Lewis MA, Webb NJ: Long-term outcome of meningococcal sepsis-associated acute renal failure. Pediatr Crit Care Med 2005, 6:477-479.
• [7]Shears D, Nadel S, Gledhill J, Gordon F, Garralda E: Psychiatric adjustment in the year after meningococcal disease in childhood. J Am Acad Child Adolesc Psychiatry 2007, 46(1):76-82.
• [8]Christie D, Viner RM, Knox K, Coen PG, Wang H, El Bashir H, Legood R, Patel BC, Booy R: Long-term outcomes of pneumococcal meningitis in childhood and adolescence. Eur J Pediatr 2011, 170(8):997-1006.
• [9]Borg J, Christie D, Coen PG, Booy R, Viner RM: Outcomes of meningococcal disease in adolescence: prospective, matched-cohort study. Pediatrics 2009, 123(3):e502-e509.
• [10]Levy C, Taha MK, Weil Olivier C, Quinet B, Lecuyer A, Alonso JM, Aujard Y, Bingen E, Cohen R, Groupe des pédiatres et microbiologistes de l'Observatoire National des Méningites: Association of meningococcal phenotypes and genotypes with clinical characteristics and mortality of meningitis in children. Pediatr Infect Dis J 2010, 29(7):618-623.
• [11]National Institute for Health and Clinical Excellence: Management of bacterial meningitis and meningococcal septicaemia in children and young people younger than 16 years in primary and secondary care. London: NICE; 2010.
• [12]Glaser BG: Doing grounded theory: issues and discussions. Mill Valley, CA: Sociology Press; 1998.
• [13]Pope C, Ziebland S, Mays N: Qualitative research in health care: analysing qualitative data. BMJ 2000, 320:114-116.
• [14]Ritchie J, Lewis J (Eds): Qualitative Research Practice: A Guide for Social Science Students and Researchers. London: Sage Publications; 2003.
• [15]Slomine BS, McCarthy ML, Ding R, et al.: Health care utilization and needs after pediatric traumatic brain injury. Pediatrics 2006, 17:e663-e674.
• [16]Hawley CA: Reported problems and their resolution following mild, moderate and severe traumatic brain injury amongst children and adolescents in the UK. Brain Inj 2003, 17:105-129.
• [17]Aitken ME, Mele N, Barrett KW: Recovery of injured children: parent perspectives on family needs. Arch Phys Med Rehabil 2004, 85:567-573.
• [18]De Louvois J, Halket S, Harvey D: Effect of meningitis in infancy on school-leaving examination results. Arch Dis Child 2007, 92:959-962.
• [19]Sweeney F, Viner RM, Booy R, Christie D: Parents' experiences of support during and after their child's diagnosis of meningococcal disease. Acta Paediatr 2013, 102(3):e126-e130.
• [20]Network SIG: Management of invasive meningococcal disease in children and young people. Edinburgh: SIGN; 2008.