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Evidence review for information for suspected bacterial meningitis or meningococcal disease
Evidence review K1
NICE Guideline, No. 240
Information for suspected bacterial meningitis or meningococcal disease
Review question
What information is valued by patients and their families or carers, when concerns arise about the possibility of bacterial meningitis or meningococcal disease?
Introduction
Bacterial meningitis and meningococcal disease (meningococcal sepsis with or without an associated meningitis) are rare but serious infections, which can occur in any age group.
When the possibility of these conditions is first raised, patients and their families or carers will naturally have many concerns and questions.
The aim of this review is to determine what information patients and their families or carers value when concerns first arise about the possibility of bacterial meningitis or meningococcal disease, but before the diagnosis is confirmed.
Summary of the protocol
See Table 1 for a summary of the Population, Phenomenon of Interest and Context characteristics of this review.
For further details see the review protocol in appendix A.
Methods and process
This evidence review was developed using the methods and process described in Developing NICE guidelines: the manual. Methods specific to this review question are described in the review protocol in appendix A and the methods document (supplementary document 1).
Declarations of interest were recorded according to NICE’s conflicts of interest policy.
Qualitative evidence
Included studies
Nine qualitative studies were included in this review (De 2014, Haines 2005, Jones 2014, Kelly 2016, Neill 2015, Sahm 2016, Sweeney 2013, Villarejo-Rodriguez 2019, Walsh 2007).
The included studies are summarised in Table 2.
Seven studies reported views and experiences of parents and carers of babies, children and young people suspected of having bacterial meningitis (De 2014, Jones 2014, Kelly 2016, Neill 2015, Sahm 2016, Villarejo-Rodriguez 2019, Walsh 2007). Two studies reported the views and experiences of parents and carers of children and young people who had confirmed meningococcal disease (Haines 2005, Sweeney 2013) but only views and experiences of information pre-diagnosis of the disease has been included in this review.
The data from the included studies were synthesised and a number of central themes and sub-themes emerged (as shown in Figure 1).
Two studies were from Australia (De 2014, Walsh 2007), 1 study was from England (Haines 2005), 3 studies were from the UK (Jones 2014, Neill 2015, Sweeney 2013), 1 study was from Ireland (Kelly 2016), 1 study was from Denmark (Sahm 2016), and 1 study was from Spain (Villarejo-Rodriguez 2019).
See the literature search strategy in appendix B and study selection flow chart in appendix C.
Excluded studies
Studies not included in this review are listed, and reasons for their exclusion are provided in appendix J.
Summary of included studies
Summaries of the studies that were included in this review are presented in Table 2.
See the full evidence tables in appendix D.
The themes identified through analysis of all the included studies are listed here: information format, communication, information at diagnosis, information sources, timing of information and information content.
This was a qualitative meta-synthesis, so no quantitative meta-analysis was conducted (and there are no forest plots in appendix E).
Summary of the evidence
The evidence generated 6 main themes in relation to the information valued by parents, their families, and carers when bacterial meningitis or meningococcal disease is suspected. Seven studies provided the evidence relating to information format, which had 4 sub-themes (written, verbal, accessible, and audio-visual). Six studies provided the evidence relating to information sources, which had 8 subthemes (internet, smartphone apps, media, lay sources, healthcare professionals, community-based systems, education, and experience). Three studies provided the evidence relating to information content, which had 2 subthemes (detailed and conflicting information). Six studies provided the evidence relating to communication, which had 3 subthemes (inadequate, clear, and open). Two studies provided the evidence relating to timing of information, which had 2 subthemes (managing common childhood illness and managing individual child’s illness). Four studies provided the evidence relating to information at diagnosis, which had no subthemes. The overarching themes and subthemes were developed to allow subthemes on a common topic to be grouped to aid presentation of results, without obscuring the detail included within the individual subthemes. For example, the subthemes on information sources all related to different sources of information that parents and carers had reported using and what their views about these different sources were. Figure 1 shows the themes and the subthemes.
Whilst there was not a specific theme or subtheme about language, the subtheme about clear communication included that information should be presented in simple language and multiple languages. However, no evidence emerged relevant to the theme of decision making, stated in the phenomenon of interest in the protocol.
A summary of the strength of evidence, assessed using GRADE-CERQual, is presented for each of the sub-themes in the theme map above. The main reasons for downgrading were due to concerns about methodological limitations of the primary studies (for example, because of a lack of consideration of the relationship between researcher and participants, no justification for data collection methods as it relates to data saturation and potential for recruitment bias), concerns about relevance (for example, because studies focused on fever), and concerns about adequacy (for example, for review findings when evidence offered no or only some rich data).
Findings from the studies are summarised in GRADE-CERQual tables. See the evidence profiles in appendix F for details.
Economic evidence
Included studies
A single economic search was undertaken for all topics included in the scope of this guideline, but no economic studies were identified which were applicable to this review question.
Economic model
No economic modelling was undertaken for this review because the committee agreed that other topics were higher priorities for economic evaluation. This was because this review does not involve a comparison of competing courses of action.
The committee’s discussion and interpretation of the evidence
The outcomes that matter most
The review focused on the views and experiences of the information provided when bacterial meningitis and/or meningococcal disease is suspected. The committee identified a number of potential themes as illustrative of the main themes to guide the review. These themes were information content, information format, information sources, decision making, timing of information provision, language, and communication. However, the potential themes were not exhaustive, as the committee did not want to constrain the evidence, and an emergent approach was taken to the thematic synthesis.
The quality of the evidence
The evidence was assessed using GRADE-CERQual methodology and the overall quality ranged from low to high. Assessments of the potential methodological limitations of the primary studies were undertaken using the CASP checklist; overall concerns regarding methodological limitations ranged from “no or very minor” to “moderate concerns”. The most common issues were lack of consideration of the relationship between researcher and participants, no justification for data collection methods as it relates to data saturation and potential for recruitment bias. Concerns about relevance ranged from “no or very minor” to “moderate”. The minor concerns were due to studies focusing on fever as the main context for the study with meningitis as one of the potential causes of fever. Moderate concerns were because of studies that focused on confirmed meningitis or meningococcal disease as the main context of the study but focused on fever as the main context of the study with all participants admitted to hospital and having a complete sepsis work up. Concerns about coherence were “no or very minor” for all the review findings, as there was no data that contradicted the findings nor was there ambiguous data. Concerns about adequacy ranged from “no or very minor” to “serious”. There were serious concerns for review findings when evidence offered no rich data, moderate concerns for review findings when evidence offered some rich data and minor concerns for review findings that were based on evidence offering moderately rich data. The number of studies contributing to each subtheme ranged from 1 to 6.
No evidence was identified for the following outcomes: decision making and language.
Benefits and harms
All the evidence identified for this review focused on the views of parents or carers. However, the committee agreed that the recommendations made should apply equally to people, who are in hospital, with suspected bacterial meningitis or meningococcal disease themselves. Although, they acknowledged that there may be differences in the types and delivery of information provided to people with suspected bacterial meningitis or meningococcal disease and their parents or carers due to factors such as the developmental age of the individual (particularly in the case of babies, children, and young people) and the impact of the illness on people’s ability to communicate. The committee noted that there were no differences in the emergent themes based on whether the suspected diagnosis was bacterial meningitis or meningococcal disease.
The committee were aware of existing NICE guidance on patient experience in adult NHS services and babies, children and young people’s experience of healthcare, and focused recommendations on information needs that were specific to bacterial meningitis and meningococcal disease.
There was moderate quality evidence from subtheme K1.4.1 (inadequate communication) and theme 6 (information at diagnosis) that parents felt they did not receive adequate information from health professionals during the period of diagnosis. Similarly, there was moderate quality evidence from subthemes K1.3.1 (detailed information content) and K1.4.3 (clear communication) that parents expressed a need for detailed and clear information on all aspects of their child’s illness. Specifically, parents highlighted the need for more information about the suspected diagnosis (theme 6 and subtheme K1.3.1), the disease (subtheme K1.3.1; severity, symptoms, causes, management, and trajectory), when to seek professional advice (subtheme K1.3.1) and procedures such as lumbar puncture (subtheme K1.4.1). In addition, there was moderate quality evidence from subthemes K1.1.2 (verbal information format) and subtheme K1.2.5 (healthcare professionals as source of information) that information was usually not voluntarily offered by healthcare professionals. The committee considered the evidence and recommended that clear information is provided about the reasons for their suspected diagnosis and any uncertainty about their initial diagnosis, the need for investigations (including lumbar puncture for bacterial meningitis), and any considerations around the timing of investigations and administration of antibiotics. The committee agreed that healthcare professionals need to establish the right time to offer information to patients and their families, including timing of investigations and administrations of antibiotics, whilst also considering the amount of time available for them to digest the information. The committee highlighted that, in their experience, fear often originates from a lack of information and, therefore, agreed that keeping people with suspected bacterial meningitis or meningococcal disease and their parents or carers informed on when they can expect to know more is important to reduce anxiety while they wait for a confirmation of the diagnosis.
Based on their experience, the committee discussed the need for information in situations where people are considered unlikely to have bacterial meningitis or meningococcal disease but are sent home from hospital with an unconfirmed diagnosis. The committee agreed that everyone in these circumstances should be provided with safety-netting information on symptoms and signs to look out for and what changes should prompt return to hospital. The committee considered the high quality evidence from subtheme K1.1.1 (written information format) where parents expressed a preference for information in written format, and the moderate quality evidence from subtheme K1.3.1 (detailed information content) where parents expressed the need for detailed information on all aspects of the illness, including when to seek professional advice. In addition, they considered the moderate to high quality evidence from subthemes K1.1.3 (audio-visual information format), K1.2.1 (internet as source of information), K1.2.2 (smartphone apps as source of information) and K1.2.3 (media as source of information) where parents reported seeking information from digital sources such as the internet and smartphone apps. Based on this evidence and their clinical knowledge and experience, the committee agreed that people should be directed to sources of online information. This was additionally supported by high quality evidence from subtheme K1.1.4 (accessible information format) that parents needed easily accessible, credible information without having to navigate through this themselves.
Cost effectiveness and resource use
This qualitative review question did not consider decisions between competing alternatives and therefore is not directly relevant to the tools of economic evaluation. Whilst communication and information provision do consume resources, they are also a vital and routine part of healthcare provision. The committee felt their recommendations reflected good practice which would not entail a significant resource impact to the NHS and would help promote the provision of information that is valued by patients and carers where bacterial meningitis or meningococcal disease is suspected.
Recommendations supported by this evidence review
This evidence review supports recommendations 1.3.1 and 1.3.2. Other evidence supporting the recommendations can be found in the evidence review on support for suspected bacterial meningitis or meningococcal disease (see evidence review K2).
References – included studies
De 2014
De, S, Tong, A, Isaacs, D et al. Parental perspectives on evaluation and management of fever in young infants: an interview study. Archives of Disease in Childhood, 99(8), 717–723, 2014 [PubMed: 24849214]Haines 2005
Haines, C. Parents’ experiences of living through their child’s suffering from and surviving severe meningococcal disease. Nursing in critical care, 10(2), 78–89, 2005 [PubMed: 15839239]Jones 2014
Jones, C. H. D, Neill, S, Lakhanpaul, M et al. Information needs of parents for acute childhood illness: Determining ‘what, how, where and when’ of safety netting using a qualitative exploration with parents and clinicians. BMJ open, 4 (1), 2014 [PMC free article: PMC3902331] [PubMed: 24430877]Kelly 2016
Kelly, M, Sahm, L. J, Shiely, F et al. Parental knowledge, attitudes and beliefs regarding fever in children: an interview study. BMC public health, 16, 540, 2016 [PMC free article: PMC4940974] [PubMed: 27401677]Neill 2015
Neill, S. J, Jones, C. H, Lakhanpaul, M et al. Parent’s information seeking in acute childhood illness: what helps and what hinders decision making?. Health expectations : an international journal of public participation in health care and health policy, 18(6), 3044–3056, 2015 [PMC free article: PMC5810715] [PubMed: 25327454]Sahm 2016
Sahm, L. J, Kelly, M, McCarthy, S et al. Knowledge, attitudes and beliefs of parents regarding fever in children: A Danish interview study. Acta Paediatrica, International Journal of Paediatrics, 105(1), 69–73, 2016 [PubMed: 26280909]Sweeney 2013
Sweeney, F, Viner, R. M, Booy, R et al. Parents’ experiences of support during and after their child’s diagnosis of meningococcal disease. Acta Paediatrica, 102(3), e126–30, 2013 [PubMed: 23205710]Villarejo-Rodriguez 2019
Villarejo-Rodriguez, M. G and Rodriguez-Martin, B. A qualitative study of parents’ conceptualizations on fever in children aged 0 to 12 years. International Journal of Environmental Research and Public Health, 16(16), 2959, 2019 [PMC free article: PMC6720744] [PubMed: 31426408]Walsh 2007
Walsh, A; Edwards, H; Fraser, J. Influences on parents’ fever management: beliefs, experiences and information sources. Journal of Clinical Nursing, 16(12), 2331–2340, 2007 [PubMed: 17419783]NICE 2012
National Institute for Health and Care Excellence (2012). Patient experience in adult NHS services: improving the experience of care for people using adult NHS services. Available at: https://www.nice.org.uk/guidance/cg138 [Accessed 18/07/2022] [PubMed: 34260162] NICE 2021
National Institute for Health and Care Excellence (2021). Babies, children and young people’s experience of healthcare. Available at: https://www.nice.org.uk/guidance/ng204 [Accessed 18/07/2022] [PubMed: 34730910]
Qualitative
Economic
No studies were identified which were applicable to this review question.
Other
Appendices
Appendix A. Review protocols
Appendix B. Literature search strategies
Appendix C. Qualitative evidence study selection
Appendix D. Evidence tables
Appendix E. Forest plots
Forest plots for review question: What information is valued by patients and their families or carers, when concerns arise about the possibility of bacterial meningitis or meningococcal disease?
No meta-analysis was conducted for this review question and so there are no forest plots.
Appendix F. GRADE-CERQual tables
Appendix G. Economic evidence study selection
Appendix H. Economic evidence tables
Economic evidence tables for review question: What information is valued by patients and their families or carers, when concerns arise about the possibility of bacterial meningitis or meningococcal disease?
No evidence was identified which was applicable to this review question.
Appendix I. Economic model
Economic model for review question: What information is valued by patients and their families or carers, when concerns arise about the possibility of bacterial meningitis or meningococcal disease?
No economic analysis was conducted for this review question.
Appendix J. Excluded studies
Excluded studies for review question: What information is valued by patients and their families or carers, when concerns arise about the possibility of bacterial meningitis or meningococcal disease?
Excluded qualitative studies
The excluded studies table only lists the studies that were considered and then excluded at the full-text stage for this review (N=58) and not studies (N=5) that were considered and then excluded from the search at the full-text stage as per the PRISMA diagram in Appendix C for the other review questions in the same search.
Table 11Excluded studies and reasons for their exclusion
| Study | Code [Reason] |
|---|---|
| (2018) Raising awareness of the signs and symptoms, and ensuring early diagnosis and treatment of meningococcal disease. |
- Study design not of interest for review Recommendations made via expert consensus. No presentation of qualitative data |
| Ahronheim, S. R, McGillivray, D, Barbic, S et al. (2015) Expectant parents ’ understanding of the implications and management of fever in the neonate. PLoS ONE 10 (4) [PMC free article: PMC4390280] [PubMed: 25853510] |
- Study design not of interest for review Quantitative study and no indication of suspected meningitis or meningococcal disease |
| Al-Eissa, Y.A, al-Zamil, F.A, al-Sanie, A.M et al. (2000) Home management of fever in children: Rational or ritual?. International Journal of Clinical Practice 54(3): 138–142 [PubMed: 10829354] |
- Population not of interest for review No indication of suspected meningitis or meningococcal disease |
| Al-Nouri, L and Basheer, K. (2006) Mothers’ perceptions of fever in children. Journal of Tropical Pediatrics 52(2): 113–116 [PubMed: 16115838] |
- Study design not of interest for review Quantitative study |
| Ames, N. J, Peng, C, Powers, J. H et al. (2013) Beyond intuition: Patient fever symptom experience. Journal of pain and symptom management 46(6): 807–816 [PMC free article: PMC3830719] [PubMed: 23742739] |
- Population not of interest for review No indication of suspected meningitis or meningococcal disease |
| Apitzsch, S, Larsson, L, Larsson, A. K et al. (2021) The physical and mental impact of surviving sepsis - a qualitative study of experiences and perceptions among a Swedish sample. Archives of Public Health 79(1): 66 [PMC free article: PMC8088073] [PubMed: 33933171] |
- Population not of interest for review No indication of suspected meningitis or meningococcal disease |
| Arica, S. G, Arica, V, Onur, H et al. (2012) Knowledge, attitude and response of mothers about fever in their children. Emergency medicine journal 29(12): e4 [PubMed: 22158536] |
- Study design not of interest for review Quantitative study |
| Aurel, M, Dubos, F, Motte, B et al. (2011) Recognising haemorrhagic rash in children with fever: a survey of parents’ knowledge. Archives of Disease in Childhood 96(7): 697–698 [PubMed: 20522475] |
- Phenomenon of interest not of interest for review Study is focused on how meningococcal disease is identified |
| Blake Jr, R. L; Spencer, D; Daugird, A. (1981) After-hours management of febrile children. The Journal of family practice 13(5): 613–617 [PubMed: 7276872] |
- Study design not of interest for review Quantitative study |
| Brunt, Kimberly Coder (1997) Parental beliefs and action regarding fever in children. Dissertation Abstracts International: Section B: The Sciences and Engineering 57(9b): 5908 |
- Context not of interest for review Dissertation |
| Carter, B, Roland, D, Bray, L et al. (2020) A systematic review of the organizational, environmental, professional and child and family factors influencing the timing of admission to hospital for children with serious infectious illness. 15(7): e0236013 [PMC free article: PMC7377491] [PubMed: 32702034] |
- Study design not of interest for review A systematic review study; individual included studies have been assessed and none meet the inclusion criteria |
| Cuzzolin, L, Zaffani, S, Gangemi, M et al. (2004) Parental attitudes about the most common symptoms/pathologies in pre-school children. Italian Journal of Pediatrics 30(4): 248–253 |
- Population not of interest for review No indication of suspected meningitis or meningococcal disease |
| Davie, S; Glennie, L; Rowland, K. (2012) Towards a meningitis free world-Can we eliminate meningococcal meningitis?. Contribution of the meningitis patient groups. Vaccine 30(suppl2): B98–B105 [PubMed: 22607905] |
- Study design not of interest for review Overview of research and other activities by meningitis patient groups. No qualitative data presented |
| De Bont, E. G. P. M, Francis, N. A, Dinant, G. J et al. (2014) Parents’ knowledge, attitudes, and practice in childhood fever: An internet-based survey. British Journal of General Practice 64(618): e10–e16 [PMC free article: PMC3876146] [PubMed: 24567577] |
- Population not of interest for review No indication of suspected meningitis or meningococcal disease |
| de Bont, E. G, Loonen, N, Hendrix, D. A et al. (2015) Childhood fever: a qualitative study on parents’ expectations and experiences during general practice out-of-hours care consultations. BMC family practice 16: 131 [PMC free article: PMC4597376] [PubMed: 26446754] |
- Population not of interest for review No indication of suspected meningitis or meningococcal disease |
| Diorio, C, Martino, J, Boydell, K. M et al. (2011) Parental perspectives on inpatient versus outpatient management of pediatric febrile neutropenia. Journal of pediatric oncology nursing 28(6): 355–362 [PubMed: 22194148] |
- Population not of interest for review No indication of suspected meningitis or meningococcal disease |
| Fee, N, Hartigan, L, McAuliffe, F. M et al. (2017) Education in Sepsis: A Review for the Clinician of What Works, for Whom, and in What Circumstances. Journal of Obstetrics and Gynaecology Canada 39(9): 772–780 [PubMed: 28673799] |
- Phenomenon of interest not of interest for review Focused on medical education for recognition and management of sepsis in pregnant patients |
| Fletcher, J.L; Jr; Creten, D. (1986) Perceptions of fever among adults in a family practice setting. Journal of Family Practice 22(5): 427–430 [PubMed: 3486251] |
- Population not of interest for review No indication of suspected meningitis or meningococcal disease |
| Forsner, M; Jansson, L; Sorlie, V. (2005) The experience of being ill as narrated by hospitalized children aged 7-10 years with short-term illness. Journal of child health care : for professionals working with children in the hospital and community 9(2): 153–165 [PubMed: 15961369] |
- Population not of interest for review No indication of suspected meningitis or meningococcal disease |
| Gallop, K. H, Kerr, C. E. P, Nixon, A et al. (2015) A qualitative investigation of patients’ and caregivers’ experiences of severe sepsis. Critical care medicine 43(2): 296–307 [PubMed: 25251757] |
- Population not of interest for review No indication of suspected meningitis or meningococcal disease |
| Gehrke-Beck, S, Banfer, M, Schilling, N et al. (2017) The specific needs of patients following sepsis: A nested qualitative interview study. BJGP open 1(1) [PMC free article: PMC6172671] [PubMed: 30564650] |
- Population not of interest for review No indication of suspected meningitis or meningococcal disease |
| Hancock, Rebecca D. (2018) Qualitative analysis of older adults’ experiences with sepsis. Dissertation Abstracts International: Section B: The Sciences and Engineering 79(12be): No-Specified |
- Context not of interest for review Dissertation |
| Hiller, M. G; Caffery, M. S; Begue, R. E. (2019) A Survey About Fever Knowledge, Attitudes, and Practices Among Parents. Clinical pediatrics 58(6): 677–680 [PubMed: 30873862] |
- Study design not of interest for review Quantitative study |
| Jeddian, A. R, Lindenmeyer, A, Marshall, T et al. (2016) Caring for Acutely Ill Patients in General Wards: A Qualitative Study. Archives of Iranian Medicine 19(9): 639–44 [PubMed: 27631179] |
- Population not of interest for review Study focused on health professionals in Iran |
| Jensen, J.F, Tonnesen, L.L, Soderstrom, M et al. (2010) Paracetamol for feverish children: parental motives and experiences. Scandinavian Journal of Primary Health Care 28(2): 115–120 [PMC free article: PMC3442316] [PubMed: 20470019] |
- Population not of interest for review No indication of suspected meningitis or meningococcal disease |
| Kai, J. (1996) What worries parents when their preschool children are acutely ill, and why: a qualitative study. BMJ 313(7063): 983–986 [PMC free article: PMC2352339] [PubMed: 8892420] |
- Context not of interest for review Study date precedes 2000 |
| Kai, J. (1996) Parents’ difficulties and information needs in coping with acute illness in preschool children: A qualitative study. British medical journal 313(7063): 987–990 [PMC free article: PMC2352333] [PubMed: 8892421] |
- Context not of interest for review Study date precedes 2000 |
| Karwowska, Anna, Nijssen-Jordan, Cheri, Johnson, David, Davies, H. Dele (2002) Parental and health care provider understanding of childhood fever: a Canadian perspective. CJEM 4(6): 394–400 [PubMed: 17637156] |
- Study design not of interest for review Quantitative study |
| Kelly, M, Sahm, L. J, Shiely, F et al. (2015) The knowledge, attitudes and beliefs of carers (parents, guardians, healthcare practitioners, creche workers) around fever and febrile illness in children aged 5 years and under: Protocol for a qualitative systematic review. Systematic Reviews 4 (1) [PMC free article: PMC4391301] [PubMed: 25874896] |
- Study design not of interest for review Study protocol |
| Koksal, A. O, Ozdemir, O, Yilmaz, A. A et al. (2014) Mother approaches to children with fever. Gazi Medical Journal 25(2): 63–69 |
- Study design not of interest for review Quantitative study |
| Kramer, M.S; Naimark, L; Leduc, D.G. (1985) Parental fever phobia and its correlates. Pediatrics 75(6): 1110–1113 [PubMed: 4000786] |
- Study design not of interest for review Quantitative study |
| Kuijpers, D. L, Peeters, D, Boom, N. C et al. (2021) Parental assessment of disease severity in febrile children under 5 years of age: A qualitative study. BMJ Open 11(3) [PMC free article: PMC8098985] [PubMed: 33649055] |
- Population not of interest for review No indication of suspected meningitis or meningococcal disease - parents of children with a life threatening condition needing immediate medical attention were excluded |
| Lagerlov, Per, Helseth, Solvi, Holager, Tanja (2003) Childhood illnesses and the use of paracetamol (acetaminophen): a qualitative study of parents’ management of common childhood illnesses. Family practice 20(6): 717–23 [PubMed: 14701898] |
- Population not of interest for review No indication of suspected meningitis or meningococcal disease |
| Langer, T, Pfeifer, M, Soenmez, A et al. (2013) Activation of the maternal caregiving system by childhood fever-a qualitative study of the experiences made by mothers with a German or a Turkish background in the care of their children. BMC family practice 14: 35 [PMC free article: PMC3607993] [PubMed: 23506372] |
- Population not of interest for review No indication of suspected meningitis or meningococcal disease |
| Light, Patricia A; Hupcey, Judith E; Clark, Mary Beth (2005) Nursing telephone triage and its influence on parents’ choice of care for febrile children. Journal of Pediatric Nursing 20(6): 424–9 [PubMed: 16298283] |
- Study design not of interest for review Quantitative study and no indication of suspected meningitis or meningococcal disease |
| Marchetti, M; Minghetti, P; Donzelli, P. (1991) Treatment of children’s fevers in Italy after the withdrawal of aspirin pediatric formulations from OTC products. Journal of Social and Administrative Pharmacy 8(3): 121–129 |
- Population not of interest for review No indication of suspected meningitis or meningococcal disease |
| McIlvoy, L. (2012) Fever management in patients with brain injury. AACN advanced critical care 23(2): 204–211 [PubMed: 22543493] |
- Study design not of interest for review Literature review |
| Neill, S. J, Jones, C. H, Lakhanpaul, M et al. (2016) Parents’ help-seeking behaviours during acute childhood illness at home: A contribution to explanatory theory. Journal of child health care : for professionals working with children in the hospital and community 20(1): 77–86 [PubMed: 25296933] |
- Population not of interest for review Study reports the same population as Neill 2015 which has been included in the review, and no additional themes were identified from this study |
| Perez, S. L, Paterniti, D. A, Wilson, M et al. (2015) Characterizing the Processes for Navigating Internet Health Information Using Real-Time Observations: A Mixed-Methods Approach. Journal of Medical Internet Research 17(7): e173 [PMC free article: PMC4527005] [PubMed: 26194787] |
- Population not of interest for review Participants did not have suspected BM or MD but responded to clinical scenario of BM |
| Rawson, Timothy M; Moore, Luke S. P; Hernandez, Bernard, Castro-Sanchez, Enrique, Charani, Esmita, Georgiou, Pantelis, Ahmad, Raheelah, Holmes, Alison H. (2016) Patient engagement with infection management in secondary care: a qualitative investigation of current experiences. BMJ open 6(10): e011040 [PMC free article: PMC5093376] [PubMed: 27799238] |
- Population not of interest for review No indication of suspected meningitis or meningococcal disease |
| Sakai, R; Niijima, S; Marui, E. (2009) Parental knowledge and perceptions of fever in children and fever management practices: differences between parents of children with and without a history of febrile seizures. Pediatric Emergency Care 25(4): 231–237 [PubMed: 19382321] |
- Context not of interest for review Study set in Tokyo |
| Sivakumar, A; Venkatramanan, P; Premkumar, S. (2020) Role of the internet in the healthseeking behaviour of parents of children underfive during fever. Indian Journal of Public Health Research and Development 11(3): 482–484 |
- Study design not of interest for review Quantitative study |
| Strifler, L, Morris, S. K, Dang, V et al. (2014) The health burden of invasive meningococcal disease: A systematic review. Paediatrics and Child Health (Canada) 19(6): e92 [PubMed: 26501470] |
- Study design not of interest for review Systematic review of quantitative studies |
| Taylor-Robinson, D, Elders, K, Milton, B et al. (2010) Students’ attitudes to the communications employed during an outbreak of meningococcal disease in a UK school: A qualitative study. Journal of Public Health 32(1): 32–37 [PubMed: 19675024] |
- Population not of interest for review No indication of suspected meningitis or meningococcal disease |
| Thompson, A. P, Nesari, M, Hartling, L et al. (2020) Parents’ experiences and information needs related to childhood fever: A systematic review. Patient education and counseling 103(4): 750–763 [PubMed: 31668490] | - Study design not of interest for review systematic review study, included studies have been reviewed and relevant ones are already included in the review |
| Thompson, Alison P and Le, Anne, Hartling, Lisa, Scott, Shannon D. (2020) Fading confidence: A qualitative exploration of parents’ experiences caring for a febrile child. Journal of clinical nursing 29(05 jun): 964–973 [PubMed: 31891200] |
- Population not of interest for review No indication of suspected meningitis or meningococcal disease |
| Urbane, U. N, Likopa, Z, Gardovska, D et al. (2019) Beliefs, Practices and Health Care Seeking Behavior of Parents Regarding Fever in Children. Medicina (Kaunas, Lithuania) 55(7) [PMC free article: PMC6681325] [PubMed: 31336677] |
- Study design not of interest for review Quantitative study |
| van Elsland, S. L, Springer, P, Steenhuis, I. H et al. (2012) Tuberculous meningitis: barriers to adherence in home treatment of children and caretaker perceptions. Journal of Tropical Pediatrics 58(4): 275–9 [PubMed: 22141110] |
- Context not of interest for review Study set in South Africa |
| Van Stuijvenberg, M, De Vos, S, Tjiang, G. C. H et al. (1999) Parents’ fear regarding fever and febrile seizures. Acta Paediatrica, International Journal of Paediatrics 88(6): 618–622 [PubMed: 10419245] |
- Study design not of interest for review Quantitative study |
| Villarejo-Rodriguez, M. G and Rodriguez-Martin, B. (2019) Parental approach to the management of childhood fever: Differences between health professional and non-health professional parents. International Journal of Environmental Research and Public Health 16(20): 4014 [PMC free article: PMC6844131] [PubMed: 31635136] |
- Population not of interest for review No indication of suspected meningitis or meningococcal disease |
| Villarejo-Rodriguez, M. G and Rodriguez-Martin, B. (2020) Behavior of Parents Seeking Care From Emergency Services Due to Fever in Children. Journal of nursing scholarship : an official publication of sigma theta tau international honor society of nursing 52(2): 136–144 [PubMed: 31950605] |
- Population not of interest for review No indication of suspected meningitis or meningococcal disease |
| Villarejo-Rodriguez, M. G and Rodriguez-Martin, B. (2020) Parents’ and primary caregivers’ conceptualizations of fever in children: A systematic review of qualitative studies. Nursing & health sciences 22(2): 162–170 [PubMed: 31452312] | - Study design not of interest for review systematic review study, included studies have been reviewed and relevant ones are already included in the review |
| Wagstaff, B. (2006) Impact of antibiotic restrictions: The patient’s perspective. Clinical microbiology and infection 12(suppl5): Oct-15 [PubMed: 16827820] |
- Study design not of interest for review Literature review |
| Walsh, A; Edwards, H; Fraser, J. (2008) Parents’ childhood fever management: community survey and instrument development. Journal of Advanced Nursing 63(4): 376–388 [PubMed: 18727765] |
- Population not of interest for review No indication of suspected meningitis or meningococcal disease |
| Walsh, A; Edwards, H; Fraser, J. (2009) Attitudes and subjective norms: determinants of parents’ intentions to reduce childhood fever with medications. Health education research 24(3): 531–45 [PubMed: 18974070] |
- Study design not of interest for review Quantitative study |
| Walsh, Anne, Edwards, Helen, Abdullah, Ajzen Al-Eissa Al-Eissa Ames Anderson Banco Barrett Blatteis Blumenthal Blumenthal Broome Bursey Casey Connell Cranswick Crocetti Curtis Drwal-Klein Edwards Edwards Edwards Ferraro Fischer Goldman Gribetz Grossman Hyam Impicciatore Janke Kai Kai Kapasi Karwowska Kelly Kilmon Kinmonth Kluger Knoebel Kramer Lagerlov Li Linder Lorin Lorin Lorin Mackowiak May McCamish McCaul McErlean Murphy O’Neill-Murphy Poirier Porter Robinson Roth Sarrell Sarrell Schmitt Schmitt Singhi Taveras Thomas Usherwood Walsh Wambach Wambach Zeisberger (2006) Management of childhood fever by parents: Literature review. Journal of advanced nursing 54(2): 217–227 [PubMed: 16553708] | - Study design not of interest for review Literature review. Studies included were checked and none met the inclusion criteria |
| Westin, E and Sund Levander, M. (2018) Parent’s Experiences of Their Children Suffering Febrile Seizures. Journal of Pediatric Nursing 38(pp6873) [PubMed: 29167084] |
- Population not of interest for review No indication of suspected meningitis or meningococcal disease |
| Wisemantel, Melinda, Maple, Myfanwy, Massey, Peter D and Osbourn, Maggi, Kohlhagen, Julie, Allport, Balluffi Board Borg Braun Bronner Buysse Diaz-Caneja Fereday Garralda Grimwood Haines Heymann Israel Johnson Judge Koomen Koomen Liamputtong Massey Miller Rees Shears Shears Shurdy Sweeney Tak Vermunt (2018) Psychosocial challenges of invasive meningococcal disease for children and their families. Australian Social Work 71(4): 478–490 |
- Population not of interest for review Confirmed cases of IMD included with no data pre-diagnosis |
Excluded economic studies
No studies were identified which were applicable to this review question.
Appendix K. Research recommendations – full details
Research recommendations for review question: What information is valued by patients and their families or carers, when concerns arise about the possibility of bacterial meningitis or meningococcal disease?
No research recommendation was made for this review.
Figures
Figure 1Theme map
BM: Bacterial Meningitis; MD: Meningococcal disease
++ = high quality evidence; + = moderate quality evidence; - = low quality evidence
Tables
Table 1Summary of the protocol
| Population |
|
|---|---|
| Phenomenon of interest | Views and experiences of the information provided when bacterial meningitis and/or meningococcal disease is suspected. Themes will be identified from the literature. The committee identified the following potential themes (however, not all of these themes may be found in the literature, and additional themes may be identified):
|
| Context |
Studies sought will be those published in the English language from OECD high-income European countries, Australia, Canada, New Zealand, from 2000 until the date the searches are run. The search cut-off date of 2000 was selected as microbiology has not changed much since 2000 and most relevant interventions were available by then. Including studies prior to this may not capture experiences reflective of current practice. |
OECD: Organisation for Economic Co-operation and Development
Table 2Summary of included studies
| Study | Population | Methods | Themes applied after thematic synthesis |
|---|---|---|---|
|
General qualitative inquiry Australia |
N=36 Parents of febrile babies aged <3 months admitted to tertiary children’s hospital. Age, years: n = 23-44 |
Setting: Purposive sampling by reviewing daily hospital admissions in Tertiary children’s hospital in Sydney Data collection and analysis: Semi structured face-to-face interviews, thematically analysed following grounded theory principles. |
|
|
Phenomenological study England |
N= 7 Parents whose child has suffered from and survived severe MD Age: NR |
Setting: Purposive sampling of parents of children admitted to PICU Data collection and analysis: Semi structured face-to-face interviews, analysed using Colaizzi’s Interpretation Process. |
|
|
General qualitative inquiry United Kingdom |
N=27 Parents with at least one child under the age of 5 years who are able to speak English Age (years): <20: n = 1 20–29: n = 5 30–39: n = 16 40–49: n = 5 |
Setting: Maximum variation sampling from first contact care settings, community centres, children’s centres and nurseries in the Midlands, UK Data collection and analysis: Focus groups and/or interviews, analysed using the grounded theory method of constant comparison. |
|
|
Phenomenological study Ireland |
N= 23 Parents of children where at least one child was aged 5 years or younger at the time of the study Age, years, mean: 31.7 |
Setting: Convenience sampling from ante-natal clinics Data collection: Semistructured interviews, analysed using thematic analysis. |
|
|
General qualitative inquiry United Kingdom |
N=27 Parents of at least one child less than 5 years Age, years: <30: n = 6 30–39: n = 16 40–49: n = 5 |
Setting: Maximum variation sampling from South Asian and Gypsy/Travelling communities, a SureStart Children’s Centre and a private sector day nursery Data collection and analysis: Focus groups and individual interviews, analysed using constant comparative analysis. |
|
|
General qualitative inquiry Denmark |
N=21 Parents of healthy children where at least one child was aged five years or younger at the time of the study Age, years, median: n = 32.4 (female) n = 35.5 (male) |
Setting: Convenience sampling from the Nørrebro area of Copenhagen Data collection and analysis: Semi-structured face-to-face interviews, analysed using constant comparison method. |
|
|
General qualitative inquiry United Kingdom |
N=244 Parents/carers of survivors of serogroup B meningococcal disease in childhood Age: NR |
Setting: Purposive sampling as part of a UK (MOSAIC) Data collection and analysis: Structured telephone interviews, analysed using qualitative content analysis. |
|
|
Grounded Theory Spain |
N=57 Parents of Spanish nationality with children aged between 0 and 12 years who had received care at the Primary Care Emergency Services of the health clinics due to a fever Age, years: <30: n = 0 (male), n = 4 (female) 30–40: n = 15 (male), n = 14 (female) >40: n = 12 (male), n = 12 (female) |
Setting: Theoretical sampling and snowball sampling from the Emergency Primary Care Services in two Spanish municipalities Data collection and analysis: Focus groups, analysed using constant comparative method. |
|
|
General qualitative inquiry Australia |
N=15 Parent and primary caregiver for a child aged between six months and five years Age, years, mean: n = 34.1 |
Setting: Purposive convenience sample from advertisement in online newspaper Data collection and analysis: Interviews and focus groups, data was thematically analysed. |
|
MD: meningococcal disease; MOSAIC: meningococcal outcomes in adolescents and in children; NR: not reported; PICU: paediatric intensive care unit
Final
Evidence review underpinning recommendations 1.3.1 and 1.3.2 in the NICE guideline
This evidence review was developed by NICE
Disclaimer: The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or service users. The recommendations in this guideline are not mandatory and the guideline does not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.
Local commissioners and/or providers have a responsibility to enable the guideline to be applied when individual health professionals and their patients or service users wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with compliance with those duties.
NICE guidelines cover health and care in England. Decisions on how they apply in other UK countries are made by ministers in the Welsh Government, Scottish Government, and Northern Ireland Executive. All NICE guidance is subject to regular review and may be updated or withdrawn.