Laura Clark, Meningitis Research Foundation &University of Bristol

Aftercare and support for children after meningitis and septicaemia

Overview

Introduction and aims of the projectFirst member survey findingsAftercare survey Preliminary themes from parent interviewsRecap

Impact of meningitis project

What happens when people are sent home from hospital after meningitis and septicaemia?

-How many people have after effects and what support is needed for those after effects when they go home?(societal impact and cost to state)

- Information used to signpost members and health professionals, campaign for better services and routine vaccination and complement costing projects.

First MRF member survey

809 participants, either parents or family members or theperson actually affected answered. - Half had long term after effects

- Less than 1/3 with bacterial meningitis had a hearing assessment within 1 month

after discharge

- Difficulty with access to aftercare

- 14% of 0-18 yrs impact on education

Rationale for aftercare survey

Questions from 1st member survey? Why did people not receive hearing assessment within 4 weeks?

? Had access to aftercare improved?

? What types of support were provided for educational and behavioural and psychological problems?

?Which factors contributed towards needs being met/not met?

Need for more recent experience of accessing aftercare services

Shift in focus on aftercare rather than entire care pathway

Aftercare survey – 3 main aims

Survey of parents of children who had meningitis and septicaemia between 2000-2010 to find out:

- Which aftercare and support services parents felt were required

- How satisfied parents were with provision and access to aftercare services

-Which factors contributed to child’s needs being met/not met

Qualitative research

One-to-one follow up interviews with 18 parents to gain an understanding of why they felt child’s needs were met/not met

Survey sample

-215 parents from UK and ROI

-Most children under 4 years old when ill

-High reporting of after effects (nearly half ofparents reported that their child hadpermanent after effects – bias in sample)

-The median time since illness of responderswas 6.5 years (IQR 4 years).

NICE guideline – bacterial meningitis and septicaemia in children

1.5.3 Offer a formal audiological assessment as soon as possible, preferably before discharge, within 4 weeks of being fit to test.

1.5.5 Children and young people should be reviewed by a paediatrician with the results of their hearing test 4–6 weeks after discharge from hospital to discuss morbidities associated with their condition and offered referral to the appropriate services.

Comparison of our sample with NICE guideline

Hearing test within 4 weeks of being fit to test?

Comparison of our sample with NICE guideline

Follow up appointment after discharge?

Aftercare and support services required

-58% required at least 1 aftercare service and 41% required more than one

-The highest need was for educational support, and over half of these did not feel they received enough.

-Requirement for well integrated community care for rehabilitation in day-to-day activities (most needed physiotherapy, speech and language therapy and occupational therapy).

-Although most people could access the most needed services (albeit with some difficulty), and most agreed the support they received was useful, many disagreed that they were happy with the follow up provided. This implies other factors than access to aftercare are important for parents.

Preliminary themes emerging from interviews

“School have been brilliant”

(when enough educational support has been provided)

Preliminary themes emerging from interviews

“Routine health visitor helped a lot ”

Preliminary themes emerging from interviews

“We were totally left on our own”

Preliminary themes emerging from interviews

“Age holds everyone back – wait and see”

Recap and conclusionsAftercare survey high numbers reporting after effects due

to biased sample

Just over 1/3 reported hearing assessment within 1 month and more than 1/3 not offered follow up

Educational support, physiotherapy, speech and language

therapy and occupational support most needed

Most people could access the most needed services but many were not happy with the care received

Preliminary emerging themes from interviews – both those who felt needs were met/not met said school and health visitors very important, those with needs not met said ‘left on our own’ and child’s age delayed diagnosis

Recap and conclusions

School important for rehabilitation (educational support vital for this age group and potential for tailoring to individual needs of child)

More awareness of need for routine follow up appointments - with all involved in child’s development

Initial support post discharge more standardised/structured –how to deal with ‘wait and see’?

Thanks!

A big thank you to all parents who took part in the survey and follow up interviews, staff at MRF and health professionals and researchers who took the time to look at the survey and offer advice!