REGULAR ARTICLE

Parents’ experiences of support during and after their child’sdiagnosis of Meningococcal DiseaseFaye Sweeney1, Russell M Viner1, Robert Booy2, Deborah Christie (Deborah.Christie@uclh.nhs.uk)1

1.General and Adolescent Paediatrics Unit, UCL Institute of Child Health, London, UK2.National Centre for Immunisation Research & Surveillance (NCIRS), The University of Sydney, Sydney, NSW, Australia

KeywordsAdolescents, Children, Meningococcal disease,Qualitative research, Support

CorrespondenceD Christie, University College London Hospital, Childand Adolescent Psychological Services, 6th Floor,250 Euston Road, London, NW1 2PQ, UK.Tel: +0203 447 9086 |Fax: +0203 447 9064 |Email: Deborah.Christie@uclh.nhs.uk

Received3 August 2012; revised 1 October 2012;accepted 28 November 2012.

DOI:10.1111/apa.12112

ABSTRACTAim: 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.

INTRODUCTIONMeningococcal infection is the most common cause ofbacterial meningitis and septicaemia in children in the UK(1). Serogroup B meningococcal disease (MenB) remainsthe only common cause of childhood meningitis for which avaccine has not yet been introduced. 896 cases of menin-gococcal disease were confirmed in England and Wales in2009/10; 785 cases were Group B (1). MenB is a life-threatening illness with severe long-term physical andpsychological sequelae (2, 3) and is one of the diseaseswhich parents most worry about their child contracting (4).

The importance of meeting psychosocial needs is high-lighted in ‘family-centred care’, one of the core principles ofquality care for hospitalized children (5); ‘the care providedby a hospital has to centre firmly on the recognition of thechild as a member of a family; a family whose supportduring a hospital stay is essential to the child’s well-being’(6).

Support has been found to be key to parents’ perceivedability to cope during a child’s admission to intensive care

(7), although further research is needed to establish thenature of the care needed. Previous research has focused onthe needs of parents of children with chronic illness (8),with little research into long-term support needs of parentsof children with serious illness following discharge fromhospital. This is the first study to describe parental experi-ences of, and desire for, support following a diagnosis ofMen B. The rich data generated through qualitativeresearch is best suited to achieving this (8).

METHODSThe Meningococcal outcome study in adolescents and inchildren (MOSAIC) is a UK population-based study pro-viding robust outcome data on MenB disease (9). Data from245 MenB survivors were collected on physical and mental

Abbreviations

Men B, Serogroup B meningococcal disease; MOSAIC, Menin-gococcal outcome study in adolescents and in children; MRU,Meningococcal reference unit; PCR, Polymerase chain reaction;HPA, Health protection agency; GP, General practitioner; A&E,Accident and emergency; NHS, National health service.

Key notes� Parents’/carers’ experiences of support were variable,

however positive descriptions of care directly mirroredsuggestions for improvement.

� Many families do not receive specialized follow-up carefollowing discharge from hospital.

� There is a need for increased awareness and recogni-tion of the psycho-social burden of MenB disease.

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health, well-being and quality of life, cognitive function andhealth economics. 244 parents also participated in astructured interview about their experiences of support.

The recruited sample was highly similar to non-recruitedchildren in terms of age at disease (p = 0.9), sex (p = 0.4)and median length of hospital stay (p = 0.4.). However,non-recruited individuals were much more likely to live inareas in the most deprived quintile (p = 0.001). Full detailsof case definition and recruitment have been describedpreviously by Viner et al. (9). The London BloomsburyResearch Ethics Committee, part of the National ResearchEthics System (NRES), approved the study.

ProcedureTwo hundred and forty-four parents participated in atelephone interview exploring their experience of supportat the time of their child’s diagnosis and at time ofinterview. All parents were interviewed which enabled anappreciation of the full breadth of experiences. The advan-tage of this unorthodox approach mitigated a more in-depthexploration of a smaller number of participants’ responses.

Participants were asked three open-ended questions;‘What kind of support or help would you have liked tohave access to when your child was diagnosed withmeningitis?’, ‘What kind of support or help do you feelyou might need now?’ and ‘Do you have any suggestions toimprove the support received?’ Interviews were conductedby trained research assistants using neutral prompts (i.e.‘could you tell me more about that’). The terms ‘support’and ‘help’ were purposefully chosen as broad categories toinvite parent’s understandings of these concepts and toavoid potentially leading terms.

Data were analysed by the authors (FS and DC) usingqualitative content analysis (10, 11). Content analysisinvolves the systematic identification of key-words andphrases to derive recurrent themes (12). This allows theinference of meaning from the context of the discourse andadheres to the naturalistic paradigm, that is, it attempts tounderstand how people construct their own social reality(10). As the data were limited to free-text responses to threeselect questions, a more in-depth analysis was not appropri-ate. Resisting more in-depth interpretations has the advan-tage of reducing subjective influence upon the analysis.

Transcripts were read in detail several times, by FS toidentify key-words, summaries, associations and prelimin-ary themes. Subsequent readings identified themes thatdescribed identical or closely related issues. Synonyms weregrouped after considering specific context (13). Transcriptswere reread after identification of a theme to ensure thetheme was clearly grounded in data with exemplary quo-tations (14) used to achieve trustworthiness (15). A table ofthemes and corresponding quotations was produced, andthemes were counter-coded by DC. Themes were groupedinto super-ordinate themes that shared commonality andorganized to create a coherent thematic account. Exem-plary quotations were chosen for their richness and repre-sentativeness of the data. Some were chosen because theywere deemed poignant or significant. Parents commonly

refer to MenB disease as ‘meningitis’ regardless of whethertheir child had the septicaemic form of the disease; originalusage is maintained for fidelity.

ResultsSix super-ordinate themes emerged from the data: 1)information provision, 2) symptom awareness, 3) medicalfollow-up care, 4) recognition of and provision for addi-tional needs, 5) impact of the disease and 6) reassurance.

Information provisionWithin the theme of ‘information provision’ there were twosubthemes, information about the disease specifics of MenBand communication during diagnosis and treatment.

Information about the disease specifics of MenBParents who had no suggestions for how their support couldhave been improved described having all their ‘questionsanswered’ and being ‘given all the information needed’about meningitis in a written format ‘We were worriedafterwards but we had a leaflet to look over and knew wecould call the hospital if necessary’.

Many parents felt they would have liked ‘more informa-tion about what meningitis means’. Some parents referredto a desire for ‘more knowledge’ or for someone to ‘explainevery single aspect of the disease’. Parents were concernedabout after effects, with the most common request forinformation being about the long-term sequelae of meningitis,referring to ‘side-effects’ and ‘future outcomes’. The per-ceived effect of having more information was decreasedanxiety: ‘More information would put my mind at rest’.

Communication during diagnosis and treatmentClear communication was a key factor for parents whoseresponses indicated satisfaction with support provision: ‘itwas faultless from start to finish - from the paramedic tothe hospital. They kept us informed - the good and thebad’.

Parents would have liked better communication at thetime of diagnosis and treatment. ‘Getting the balance betterin communication’ included having the treatment processexplained clearly ‘more information on what is going on,like what meningitis is and how it is diagnosed’. Theywanted to be kept up to date with details of diseaseprogression and be given an opportunity to ask questions:‘More communication - it was very frightening and wedidn’t know when he was out of danger. We were not sure itwas meningitis because we weren’t really told. My partnerwas asking questions but was ignored completely’. Havingthings explained in lay terms in a way that was understand-able was also important: ‘Doctors could have explainedeverything more clearly because they explained everythingin medical terms’.

Symptom awarenessParents who described positive experiences of care identi-fied ‘quick responses’ and accurate recognition of thesymptoms as a critical factor: ‘The GP we saw at the

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surgery was completely on the ball - sent her straight toA&E’.

To avoid misdiagnosis and obtain faster treatment, theimportance of health care professionals having greaterawareness of symptoms was highlighted. Parents whosechild had been misdiagnosed said that they had wanted tobe ‘listened to’ by GPs and have their concerns takenseriously: ‘I was sent away with penicillin saying it waschicken pox. I felt I was being wrongly judged as a panickyyoung mum. I’d done the glass test already but was told Iwas mistaken. So initially I would have liked to be believed’.

Promotion of better public awareness and knowledge ofsymptoms was also seen as beneficial, ‘Parents of childrenwho haven’t had meningitis should be better informedabout it’.

Medical follow-up careHelp and support following discharge from hospital was animportant theme. This was described as ‘aftercare’, ‘follow-up’ or ‘check-up appointments’. Parents wanted specificfollow-up care, such as ‘a brain scan’, ‘another hearing test’or an appointment to address concerns about the develop-mental progress of their child: ‘more follow ups for the next18 months to check how the child progresses. Maybe every3 months to see if child progresses normally’. Parents withbehavioural concerns wanted assessment of developmentalprogress ‘I wouldn’t say he was a really naughty child but athome he seems not to listen or pay attention. I am not sureif he has behavioural problems… I would like to knowabout that’.

The need for follow-up was to assess possible sequelae:‘follow-ups to assess the impact of MenB’. There weredifferent views about the specific amount and type ofcontact desired, including ‘a home visit’, ‘specialised chil-dren’s centre’, ‘follow-up phone calls’, as well as whichhealth care professional would be appropriate: ‘I’d haveliked the district nurse to help and reassure.’, ‘a nurse orcare worker to come to explain about what had happenedand what could happen.’, ‘more check-ups from the doctoror hospital’.

Recognition of and provision for additional needsWithin the theme of ‘recognition of and provision foradditional needs’, there were three main subthemes: emo-tional, practical and educational.

EmotionalParents would have liked to have had access to emotionalsupport at diagnosis. This included talking to somebodywho had insight into the situation, such as a parent ‘whohas been through it’ or specific counselling services: ‘It isvery traumatic, it’s a very upsetting time…it might be helpfulto have counselling. I had been told that there was a chancethat [child] could die’.

There was also a need for emotional support followingdiagnosis, as the effect of MenB was immensely distressing‘It is haunting now and I still feel very sad as I feel there aretwo [child’s name]…before and after the illness and two

me’s. I don’t know what support I need…it’s with me everyday and it fuels every aspect of how I parent her. It feels likeI’ve taken a deep breath and never exhaled’.

PracticalPractical support at the time of diagnosis included financialhelp, such as ‘some information or a leaflet about what todo financially if your child is hospitalized’ or informingnurseries or schools about what was happening. Practicalhelp accessing support services was also requested post-discharge: ‘her home has still not been adapted for awheelchair-bound, visually impaired child with severelearning difficulties. We still require someone to help us toaccess the services she needs’.

EducationalAccess to educational support for was identified for parentswho had concerns about their child being ‘behind atschool’. Identification (through specialist assessment) andan understanding of specific special educational needs washighlighted. ‘Understanding and identifying his needs espe-cially at school’.

Impact of the diseaseUncertainty about the impact of meningitis was a key theme.‘What if this or other things are to do with meningitis?’Common concerns were about ‘normality’ and develop-mental progress in comparison with peers or siblings, andconcerns about behavioural problems. ‘he is in SEN [specialeducational needs] class at school and struggles with work.He finds it hard to engage with other children […]. I’d like toknow if his behaviour is due to meningitis’.

ReassuranceAn overarching theme was the need for reassurance.Parents talked about how receiving more information,emotional support or follow-up care would provide themwith reassurance regarding their coping skills or theirchild’s recovery. ‘For two years I was completely changed- my nerves - I was like a woman possessed. I would’ve likedsomeone to talk to and reassure us about things’.

DISCUSSIONPrevious research (16) showed that only 50% of subjects in astudy of invasive meningococcal disease reported follow-upcare. MOSAIC provided a unique opportunity to collectqualitative data from a large, contemporary sample of 244parents of children survivingMenB disease. Positive descrip-tions of care directly mirrored suggestions for improvement.Parents were clear that optimal support should encompassthe whole treatment pathway, beginning with fast andaccurate recognition of the disease, the provision of infor-mation about symptoms and possible sequelae, better com-munication about the treatment process and diseaseprogression and regular specialized follow-up care. Parents’would be more reassured about the impact of MenB on theirchild if this support was provided as standard.

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In the current study, parents are asking for recognition of the‘invisible psychosocial burden’ documented in the MOSAICstudy (9). Many parents feel they do not receive adequatereassurance about the impact of the disease and provision foradditional needs is insufficient 3–5 years after diagnosis.

Where misdiagnosis occurred, parents advocate greaterawareness of symptoms among primary care practitioners.Treatment delay not only occurs due to GPs and hospitalstaff’s difficulty in recognizing Meningococcal disease, butalso parents’. Presentation of symptoms is complicated andoften non-specific in the early stages. Parents may visit theGP to reduce anxiety by sharing the responsibility ofrecognizing a serious illness (4). As a result, GPs see manyfebrile children daily, whilst a case of suspected meningitisor septicaemia may only present every few years. They facea constant dilemma of ensuring parents feel ‘listened to’whilst safeguarding medical resources. This dilemma isfurther complicated by the fact that many children do notexhibit classic features of the disease (17), which makesdiagnosis in primary care difficult (18). GPs who haverecognized meningococcal disease correctly acknowledgethat contextual factors such as knowledge of parents’consultation history and anxiety levels play an importantrole in the decision-making process (19).

Enhanced public education and training of clinicians inboth symptom awareness and increased vigilance, for theoften hidden educational, social and psychological impactof MenB (9), are called for (20).

Several parents referred specifically to how helpfulsupport from charities had been. Whilst charities provideconsiderable support for families in these areas, there seemsto be huge variation in signposting to these services.

One limitation of the study was that recruited cases weremuch less likely to live in highly deprived areas than non-recruited, making it difficult to explore any possibleconfounding effects of deprivation. Additionally, it wasnot possible to explore possible links between parentalconcerns and disease severity. Further research in this areamay help clinicians to target support and after-care in themost efficient manner. Further research might also exploreother factors, beyond the scope of the present article, whichmay influence parents’ ability to comprehend or retaininformation, such as being in a heightened emotional state.

The sub-theme ‘Communication during diagnosis andtreatment’ reflects challenges in the provision of ‘family-centred care’, where a key component is communication.This study supports previous reports of ‘family-centred care’which show that the concept remains abstract (21, 22), andsupport is often ad hoc and unpredictable (23). Operation-alization of the concept of ‘family-centred care’ wouldensure that ‘family-centred care’ is recognized in policy,facilitating its provision through the establishment ofappropriate standards of care (21, 22). To achieve this,factors that limit communication such as limited time orstaff being unable or unwilling to discuss complex issueswould need to be considered.

Much of the data under the themes of ‘Communicationduring diagnosis and treatment’, ‘recognition of and

provision for additional needs’ and ‘reassurance’ couldequally apply to any serious childhood illnesses. Thesefindings therefore pose wider questions about support inpaediatrics, particularly about the way in which theinformation is communicated to parents; is it the righttype and amount of information? Is it given at the righttime? What factors influence parents’ ability to compre-hend or retain the information? It is beyond the scope ofthe present study to answer such questions. However, itwould be valuable to explore parallels between thesefindings and current support available for other seriousillnesses.

Parents feel disempowered and anxious when they lackrelevant information to make sense of a child’s illness andalso when their beliefs or expectations differ from clinicians(24). Parents who were given an information leaflet by thehospital reported that they felt supported and less anxious.A greater understanding and consideration of the issuesdescribed in this study would undoubtedly enhance parents’experience of communication and support.

This study supports the need for increased awareness andrecognition of the psycho-social burden of MenB and theneed for improved universal systems of targeted outcome-related support; using NHS resources effectively andensuring signposting to additional services where appropri-ate. As one of the first qualitative studies to explore parentalexperiences of support when a child presents with a seriousillness, it also has wider implications for support andcommunication in general paediatric practice.

ACKNOWLEDGEMENTSWe would like to acknowledge the involvement of all thechildren and young people and their families who gave theirtime to participate in MOSAIC.

COMPETING INTERESTSRB has received funding from CSL Limited, Roche, Sanofi,GlaxoSmithKline and Wyeth to conduct sponsoredresearch or attend and present at scientific meetings; healso received honoraria for delivering educational presen-tations; any funding received is directed to researchaccounts and not personally accepted. All other authorsdeclare that they have no conflicts of interest.

FUNDINGThis project was commissioned and funded by the Menin-gitis Trust, who were not involved in the study design;collection, analysis and interpretation of data or writing ofthe paper.

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