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Abstract
Objectives To explore how parents navigate urgent and emergency care (U&EC) services when their child <5 years old has a feverish illness, their views of that experience and whether services are meeting their needs and triaging in line with national guidance.
Design Parents of a febrile child <5 years old contacting any U&EC service in three localities during a 6-month period were invited to participate in a telephone questionnaire supplemented by case note review. A subset participated in an in-depth interview.
Results Of 556 parents expressing an interest, 220 enrolled, making 570 contacts (median 3, range 1–13) with services during the child's illness which lasted 3 days on average. Parents' first preference for advice in hours was to see a general practitioner (GP) (67%; 93/138) and when unavailable, National Health Service Direct (46%; 38/82). 155 made more than one contact and 63% of the repeat contacts were initiated by a service provider. A range of factors influenced parents' use of services. Parents who reported receiving ‘safety netting’ advice (81%) were less likely to re-present to U&EC services than those who did not recall receiving such advice (35% vs 52%, p=0.01). Parents identified a need for accurate, consistent, written advice regarding fever and antipyretics.
Conclusion Parents know the U&EC service options available, and their first choice is the GP. Multiple contacts are being made for relatively well children, often due to repeated referrals within the system. Safety netting advice reduces re-attendances but parents want explicit and consistent advice for appropriate home management.
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Introduction
Although most childhood illnesses are managed at home without medical intervention,1 2 children are significant users of urgent and emergency care (U&EC) in England3,–,5; for example, a quarter of calls made to National Health Service (NHS) Direct1 and more than a quarter of visits to emergency departments (EDs) each year concern children,3 with the number of ED attendances for children increasing.6 Febrile illness is one of the most common reasons for parents to contact the health services.7 ‘Fever phobia’8 or parental concerns about fever significantly influence service use9 and are due to parental anxiety about serious illness and factors such as previous experiences.10,–,15 The excessive use of secondary care services for problems perceived by parents as urgent, remains an on-going concern for healthcare provision.16,–,20
What is already known on this topic
▶ The expanding range of urgent and emergency care services available to parents need to meet the needs of children and their families.
▶ Feverish illness in a young child is a very common reason for parents to seek advice from a doctor.
▶ Guidelines recommend giving ‘safety netting’ advice to parents following contact with a healthcare professional.
What this study adds
▶ Parents are aware of the urgent and emergency care services available to them but prefer their general practitioner for initial advice.
▶ Multiple contacts are being made for relatively well children, contributed to by multiple onward referrals.
▶ Safety netting advice reduces re-attendances, but parents need more explicit and consistent written and verbal advice for appropriate home management.
In 2007, the National Institute for Health and Clinical Excellence (NICE) in England developed a guideline21 for the assessment and initial management of children less than 5 years old with feverish illness. The guideline recognised and aimed to provide advice for the plethora of U&EC options available to parents including the general practitioner (GP), out of hours GP provider (OOHs), NHS Direct (a 24-h telephone advice line for people in England staffed by nurses), walk-in centre (WIC) and ED. We aimed to explore how parents and carers access and navigate urgent services for their child <5 years of age with febrile illness, their views of that experience and whether services are meeting their needs. The term ‘parent’ is used in the remainder of the article to refer to parents and carers.
Methods
The study was carried out in three locations in England: Leicestershire (county and city), the City of Peterborough and north west London between January and June 2009. The populations in the three areas varied widely as regards socioeconomic status and included rural/urban/inner-city residents and immigrant populations. All services in each location providing U&EC were invited to take part and included ambulance services, children's assessment units, EDs, GP practices (via Primary Care Research Networks), NHS Direct centres, Primary Care Trust out of hours GP services, WICs and any other services. Other services refers to any community based health professionals such as pharmacists, midwives and health visitors. It also includes a specific team of community paediatric specialist nurses who visit acutely unwell children in one particular region.
Parents were approached when they contacted any of these primary (including non-face-to-face) or secondary services with a febrile child aged <5 years. Exclusion criteria were: (1) if the child had a pre-existing disease for which they had been given a prior pathway to follow during febrile illness; (2) the parent had initiated formal complaint procedures or was currently involved in a negligence case against the service in question; or (3) the child died during the study period. Eligibility was determined by health professionals and by the researcher. The recruitment process is described in figure 1.
Recruitment and data collection process. NICE, National Institute for Health and Clinical Excellence.
Data were collected from three sources: (1) a telephone questionnaire to determine the number of contacts the parent made during the episode of illness, the child's presenting signs/symptoms at each contact (in order to classify the level of risk according to the NICE guideline21) and the outcome in each case; (2) subject to relevant trust research and development approval and parental consent, the child's case notes for each contact with a service were reviewed for correlation with questionnaire results; and (3) a telephone semi-structured interview with a subset of parents to explore reasons for choosing particular services, experiences of navigating through the health system, whether advice given by services was followed, examples of what worked well and what could be improved, and sources of information that parents seek independently. A purposive and opportunistic sampling strategy was used to select a sample of parents across geographical areas (urban, rural and inner-city), service types and time of contact with a service (working hours/night/weekend) for the telephone interview. This stage ended when ‘saturation’ was reached.22 All parents were offered feedback on the results of the study. Interpreter services (http://www.languageline.co.uk) were used with non-English speakers.
Each contact was classified for risk of serious illness by the same researcher based on the ‘traffic light system’ recommended in the NICE guideline,21 that is, high risk if any red features were present, intermediate risk for amber features and low risk for green features alone. Any areas of uncertainty were discussed with a consultant paediatrician and consensus reached. The level of risk was determined from the questionnaire supplemented by the case note proformas.
Descriptive statistics are used to summarise the data. For categorical variables, frequencies and percentages are presented and for continuous variables, the total n, median and range are presented. Data were analysed using the Statistical Package for Social Sciences (SPSS version 17). Associations between different variables were tested by χ2 tests. The participating services were grouped in order to preserve anonymity. Deprivation ranks were calculated using data from the Indices of Multiple Deprivation (2007).23 The responses of the 29 parents who answered follow-up questions were recorded and transcribed. Content analysis and QSR NVivo software were used to analyse the transcriptions to identify any patterns and themes.22
Research ethics approval was obtained from St Thomas' Hospital Research Ethics Committee in October 2008 (08/H0802/119).
Results
Recruitment of participants
Thirty-four services agreed to act as participation identification centres and refer parents to the study team from January to June 2009 (table 1). The results comprised three datasets: 220 parents who participated in the telephone questionnaire, those children whose medical notes were reviewed and 29 parents who participated in an in-depth telephone interview (see figure 2). While all those participating in the original questionnaire were invited to participate in the in-depth interview, we selected parents so that the sample would be representative in terms of geographical area (52% urban, 24% rural, 24% inner-city), ethnicity (59% white British, 41% non-white British), socioeconomic status, number of contacts made (median 3, range 1–9), level of risk of serious illness according to parent report (28% high, 62% medium, 7% low, 3% not known), types of services used (38% secondary care) and ‘in’ and ‘out of hours’ contacts (34% in hours, 17% out of hours, 48% in and out of hours). The demography of the sample (n=220) was similar to that of England as a whole, although the proportion of mixed ethnic groups was higher in the sample (table 2). The case note review results are reported elsewhere.24
Number of participants.
Types of participating services
Contacts with services
Overall, the 220 parents made a total of 570 contacts (median 3, range 1–13) across primary and secondary care services throughout the child's illness which lasted an average (median) of 3 days (range 10 min to 2 weeks). Thirty-nine per cent (85) of parents reported seeking advice within 24 h of their child becoming ill, 23% (50) waited between 25 and 48 h, 37% (81) waited more than 49 h and the waiting time of the remainder (2%; 4) was unknown. As shown in figure 3A–D, the parents' preference for initial advice when ‘in hours’ was to see their GP (67%; 93/138). When the GP was not available, approximately half chose to contact NHS Direct (46%; 38/82). Overall, 11% (24/220) of parents brought their child directly to the ED for initial advice.
(A) Services contacted in hours for initial advice. (B) Services contacted out of hours for initial advice. (C) Services contacted at any time for initial advice. (D) Services contacted at any time and at any point in the journey. *Other services refers to any community based health professionals such as pharmacists, midwives and health visitors. It includes a specific team of community paediatric specialist nurses who visit acutely unwell children in one particular region. GP, general practitioner; NHS, National Health Service.
The outcome of the initial contact is detailed in table 3. Most onward referrals were made by primary care services. Although the lowest number of high risk patients presented to NHS Direct, these resulted in the largest number of children being assessed elsewhere. The majority (70%; 155/220) of parents had more than one contact, involving 505 contacts in total. These repeat contacts were often initiated by the health services themselves (221 of 350). A total of 44 parents made four or more contacts, accounting for 249 of the 570 contacts; 71 contacts were with a single team of community paediatric specialist nurses who visit acutely unwell children at home in one particular region.
Children presenting as at high risk of serious illness according to parent report
Reasons for parental choice of service
Interviewees evaluated their own advice seeking behaviour, and reasons for choosing specific services included the child's young age and illness history, level of concern, availability of their GP, belief that the child's illness required face-to-face consultation, previous experiences and the inconvenience associated with hospital waits. Parents would first seek advice from their GP if they could get a same day appointment (the doctor–patient relationship and listening skills were valued). Convenience and proximity were other reasons mentioned for service preference, particularly outside surgery hours. The need for reassurance and advice about whether the child could be managed at home, whether the symptoms indicated serious illness (such as meningitis) and the need to be seen by a medical professional were strong themes. The NHS Direct telephone service/website was often used for this reason, particularly out of hours.
‘Safety netting’ advice
We asked parents whether they had received safety netting advice, that is, told what to do if their child did not progress as expected (as recommended in the NICE guidance21). Overall, 81% (284/349) of those sent home or who kept their child at home recalled being given safety netting advice, 56 did not recall such advice and nine did not know. Parents not ‘safety netted’ were more likely to seek another contact than those who were (52%; 29/56 vs 35%; 98/284, p=0.01). The recall of safety netting advice was proportionate to the parent reported risk level (high: 90%; intermediate: 85%; low: 75%). Some interviewees commented that the advice given was not always helpful. One parent suggested that information about which signs to look for should be provided in writing as it can be difficult to retain spoken information when distressed.
Expectations of services
Some interviewees expressed frustration about long waiting times and the timeliness of the assessment and had clear opinions about how quickly they thought their child should be seen, which was often related to the age of the child. Some sought face-to-face contact if they felt that they had been kept waiting too long by an NHS Direct nurse returning a call and others felt prioritisation of children at the point of contact with medical services was required. Parents expected their concerns to be taken seriously, to be ‘listened to’ and not to made to feel like a ‘panicky’ parent, especially when they perceived the illness as potentially life-threatening and/or where the child was very distressed. Suggestions for improvements included understanding the families' needs, for example, the inconvenience of attending face-to-face services regarding transport, family circumstances or the time of day.
Need for appropriate information and advice
Parents had a range of fever- and service-specific information needs, namely management of fever and related symptoms, management of minor (viral) illnesses, indications for antibiotics, what temperature indicated the need to seek medical care and from where, ‘benign’ rashes and those associated with meningitis, access to services including what to do in an emergency and numbers to call, and the administration, use and effects of analgesia and antipyretics, for example, alternating ibuprofen and paracetamol. Some parents felt advice given by health professionals was conflicting. Improvements needed included consistent, clear communication about the aetiology of fever, signs to look out for following discharge and what should trigger a return visit. The internet was used as a source of information for fever and rashes prior to contacting services. Some found this failed to reassure, or encouraged them to contact NHS Direct or their GP. Others felt it was too detailed, ‘scaring’ parents unnecessarily. Many would welcome information leaflets, not only about fever but children's illnesses in general. No interviewees reported receiving a copy of the patient version of the NICE guideline.21
Discussion
This pilot study provides insight into the U&EC services used in England by parents of young children, and their rationale for doing so. Notably, despite the fact that the majority of children experienced a short (median 3 days) illness, there were an average of three contacts with services, clearly contributing to the burden that febrile illness places on the health service. However, contrary to the perceptions of many service providers, this was not the result of ‘doctor shopping’,25 but rather due to parents seeking advice being referred between services. The fragmentation of current U&EC arrangements is leading to multiple assessments, compared to ‘old-style’ general practice, and may not be cost effective. Interestingly, despite the proliferation of U&EC service options, the parents' first choice of advice was their own GP. When the GP was not accessible, they sought advice from NHS Direct in the majority of cases, although they were then often directed to other services. Most of the contacts with GPs/OOHs services at any point during the child's illness were face to face (82%) as opposed to by telephone. In times of financial stringency, these results may be of value to other countries considering providing a new range of urgent care services for young children. While these may be used by families, it is unclear how cost effective they are, given the high number of ‘internal referrals’ between services, and parents' preference to see their GP first rather than the newer service providers.
Only 11% of parents chose the ED initially for advice, and then only because they perceived their child as being at high or intermediate risk of serious illness. The ED service was the second most frequently used (15%) at any point during the patient journey (figure 3D), usually as a result of referrals between services (40 of 83 contacts). There were 16 cases where the parent self-referred to the ED following a visit to primary care (GP/OOHS GP, WIC or NHS Direct); in 10 cases, safety netting advice was given, and it is difficult to know what influence this may have had. Williams' survey of parents of children with non-urgent needs presenting to an ED found that parents generally engage in appropriate care-seeking behaviour before presenting to a paediatric ED.19
The use of ‘stay at home’ decisions by the ambulance crews could not be ascertained as unfortunately no cases were recruited to the study by this service in any of the three locations. Use of the ambulance service by study participants related only to those being transferred to the ED, where the most common reason for calling an ambulance was a ‘febrile seizure’ (9/15).
The value of safety netting advice has been highlighted by other authors.26 27 Our data would support its value. It is reassuring that 81% of parents recalled being given such advice, and re-attendances among this group were significantly fewer than among those without advice. Health professionals should ensure that safety netting advice is given to all, and not just to those perceived to be at highest risk of serious illness. ‘Fever phobia’ is reduced if parents are provided with information enabling them to care for children with mild illness and to recognise when their child needs an urgent assessment.28 Ehrich found that parents not only wanted information about which symptoms should prompt a return visit but that on the return visit they wanted a higher priority and not to have to wait at the back of the queue.29
Parents participating in this study explicitly identified a need for consistent advice regarding fever thresholds that warrant assessment or treatment, what symptoms and signs to watch for, what antipyretics should be used and what dosing regimes were required. Some parents expressed a desire to receive written information, and we recommend that such guidance (eg, advice leaflets based on the fever chapter in the Department of Health publication, Birth to five years30) should be produced and disseminated throughout U&EC services to standardise the assessment and management of such children. It was disappointing to note that most parents asked were unaware of NICE's ‘parent information’ for febrile illness and this does raise questions as to how this is being disseminated. Providers need to be more aware of the resources that parents use, in particular online resources, and consider uploading relevant advice to such sites.
Conclusion
Parents have a good knowledge of the U&EC services available to them locally, and would prefer to attend their GP first when their young child is ill. There are an unacceptably high number of health service contacts for short-lived illnesses among children, most of which are generated by referrals between services and not by parents. This raises questions about the current service provision for these children: are all of the newer urgent care services ‘adding value’ to the care of these children? It also highlights the need for relevant training of those assessing acutely ill children. Safety netting advice is a priority and significantly reduces re-attendances. Clear, consistent, symptom-based written advice for parents about what features to look for, home management and when to seek further help is urgently required by all services and may reduce the burden of low risk consults on these services.
Acknowledgments
The authors would like to thank Richard Baker, Elizabeth Draper, Linda Haines, Patricia Hamilton, Fiona Jewkes, Martin Richardson and Ann Seymour of the project steering group, as well participating parents, individual staff who helped us at collaborating NHS Trusts, and the Primary Care Research Networks.
References
Footnotes
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Funding This study was funded by Department of Health for England.
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Competing interests None.
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Ethics approval This study was conducted with the approval of the St Thomas' Hospital Research Ethics Committee.
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Provenance and peer review Not commissioned; externally peer reviewed.