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

Abstract

BackgroundSurvivors 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.MethodsMixed 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.ResultsOf 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.ConclusionsOur study supports the NICE and SIGN guidelines and highlights areas for improvement in the aftercare of these children.

A population-based prospective birth cohort study of childhood neurocognitive and psychological functioning in healthy survivors of early life meningitis

“…Although relatively less studied, meningitis is associated with poorer neurocognitive and educational performance. Studies have reported deficits in IQ, memory, increased emotional symptoms during childhood and adolescence among survivors of early-life meningitis (10-12, 15, 16). This suggests serious complications, which are often used to measure the impact of childhood meningitis, may only represent the tip of the iceberg in terms of disability associated with the illness.…”

Social Functioning and Autistic Behaviors in Youth Following Acquired Brain Injury

“…Further, a number of studies have reported poorer social adaptation and decreased social participation in youth following stroke [ 32 , 33 , 34 ], with challenges sometimes persisting in the absence of cognitive and/or behavioral difficulties. Similarly, 40% of parents of children who have survived bacterial meningitis and septicemia reported significant social and/or behavioral sequalae following the illness, and many of the families felt the social and behavioral aspects of recovery were under-recognized and underserved [ 35 ].…”

Challenges in pediatric post-sepsis care in resource limited settings: a narrative review

“…For example, in HICs, children admitted to the pediatric intensive care unit (PICU) for sepsis and assessed 3-6 months post-discharge showed lower IQ (albeit scores were within the normal range) and verbal recall than healthy control children; teachers also reported greater deterioration in academic and classroom performance (41). In a study evaluating post-sepsis effects in children approximately 1 year post-illness, researchers found that 42% of children had moderate or severe permanent sequelae including psychosocial, motor, or sensory changes (42). More recently, in addition to adverse neurodevelopmental outcomes, changes in QoL scores of survivors of pediatric sepsis have been reported (43).…”