Lee, P. (2008) Exploring online pre-admission information for children. This is an extended version of the article published in Nursing Times; 104: 19, 28-29.
BACKGROUND: Children and their families are less anxious during hospital admission if their information needs have been addressed adequately.
AIM: To explore information available on the internet to children and families before the child’s planned hospital admission.
METHOD: A descriptive survey of all NHS hospital trusts in the London region was undertaken to determine the amount of information available.
RESULTS: Only nine out of 32 websites provided any child-specific information.
CONCLUSION: Recommendations are given for how websites could be developed to meet children’s and families’ information needs.
Polly Lee, MSc, BA, RSCN, RGN, is lecturer in child health, City University.
Information before admission to hospital is useful for all patients, and particularly for children. The last few years have seen a massive increase in the information available to children and their families through books, videos and specifically designed pre-admission programmes. As the number of households with internet access is rising, some of the information previously provided through expensive media, such as books, is now available on hospital trusts’ own websites. However, it is not clear how much information is available through such sources.
This study aimed to explore information available on the internet to children and their families, before the child’s planned admission to hospital.
The objectives were to:
Examine websites to determine the information available to children;
Examine websites to establish the information available to families;
Consider differences between sites regarding the information given (provided that sufficient information was available).
There is a wealth of literature acknowledging the anxiety and distress that a child’s hospitalisation can have on both the child and parents (Beddows, 1997; Sheldon, 1997).
In order to help prevent stress in this experience, it is widely accepted that children and parents need appropriate information when the child is ill or injured (Department of Health, 2004). Furthermore, Abbott (1990) and Ritchie et al (1984) highlighted the importance of giving children truthful answers to questions regarding both medical equipment and treatments.
Parents, however, often feel they cannot answer their child’s questions (Smith and Callery, 2005). McGrath and Huff (2001) argued that if children do not have information about illness they will develop misconceptions and use their imagination to construct their own answers. Therefore, some form of information is essential for them. Smith and Callery (2005) found, when interviewing 7–11 year olds before planned surgery, that the children had not received information about it from healthcare professionals at the hospital.
Various strategies have been introduced in an attempt to reduce children’s anxiety before a planned admission. Over the last two decades these have included pre-admission clubs, often known as Saturday clubs. The information given at these clubs was previously based on healthcare professionals’ perceptions of what children needed or ought to know, whereas now children’s views are solicited (Smith and Callery, 2005).
Initiatives such as booklets, slide shows and videos have also been produced locally. Play specialists use these (Matthews and Lonsdale, 1992), but to meet the play specialist the child must either attend the pre-admission clinic or wait until they are admitted. Provision of information on admission, information-giving by theatre staff (Donnelly, 1998) and information before specific procedures such as venepuncture (Willock et al, 2004) are other measures that have been used.
Pre-admission clinics have often developed from Saturday clubs. These clinics now not only provide information - and therefore are intended to help the child and family emotionally - but also they form part of the admission process. Children and families see a variety of health professionals, including surgeons and anaesthetists, and therefore patients are assessed clinically. However, such schemes may entail parents taking additional time off work, unless the pre-admission clinic is on the same day as the outpatient appointment. Although research suggests that such initiatives are beneficial, not every healthcare facility provides such schemes (Garretson, 2004).
However, the socio-cultural context of child healthcare should not be forgotten. A higher proportion of children are from one-parent families compared with 20 years ago when pre-admission clubs for children were first reported. This development, coupled with the fact that some children may now travel further to hospital for surgery (Royal College of Surgeons, 2007), means that not all children and young people are able to attend pre-admission clubs.
In addition to fewer children attending such clubs, the last decade has witnessed two important developments. First, children are able to participate in decision-making (Coad, 2007). Second, there is now widespread use and availability of information on the internet. Children now expect to find answers on websites, and it seems logical that answers to their pre-admission questions should be available to them through such means. Some information is available from charities such as Action for Sick Children (www.actionforsickchildren.org) and the DH website (www.dh.gov.uk).
However, a review of the literature did not reveal the extent to which children’s pre-admission questions are answered online. Hospital trusts have their own websites but at present no overview exists on whether the information given to children is helpful or is in an accessible and flexible form (Smith and Callery, 2005).
It is possible to use the internet not only to collect information from respondents but also to search the content of websites (Ahern, 2005). Boyington et al (2006) explored the presence of nursing (usually nursing jobs available) on hospital websites. Their research also considered how deep within the site a person had to go before finding the relevant information (that is, how many clicks it took from the home page to find it). Wilkas (2002), Hendrickx and Winters (2001) and Kim et al (1999) explored the evaluation of health sites, although these were linked to self-help groups, academic sources and other organisations focusing on specific diseases, rather than hospital websites giving information to children and families.
A descriptive survey was undertaken. An advantage of this method is that it was possible to access the entire population of hospital websites, and therefore the problems of sampling and poor response rate were eliminated, and therefore bias reduced. An appraisal tool was designed (see Appendix 1) to collect ordinal data.
The study population was all NHS trusts in the NHS London region that undertook planned admission of children.
Binley’s (2006) - a publicly available database of hospitals in the UK - was searched for general hospitals, as well as specialist hospitals (for example, eye and orthopaedic) to determine the exact population. If there was doubt about whether an NHS trust admits children, then this was checked in the Institute of Healthcare Management (IHM) yearbook (2005).
Mental health trusts were excluded. Emergency admissions were not included, as less has been published on preparing children and families before such an admission. Independent hospitals were also excluded from the study as some belong to a chain of healthcare providers, and there may be one website for that entire organisation rather than just the local provider.
Thirty-two trusts were located in Binley’s (2006) and cross-referenced with the IHM yearbook to determine whether they provided children’s services. One of these was a specialist children’s trust, five were specialist service providers that admitted children, and the remaining 26 were general hospitals or trusts that admitted both adults and children. Some of these 26 had a single children’s ward and others had several children’s wards within them, some with regional or even supra-regional services.
All the information required is in the public domain (Binley’s 2006, IHM yearbook 2005-2006 and the internet). Therefore, following consultation with the chair of the university research ethics committee, it was not deemed necessary to gain approval from the committee. However, ethical considerations were made at all stages, particularly the potential identification of hospitals.
Kim et al (1999) explored the internet and peer-reviewed medical journals to identify areas of consensus on evaluating health-related information on the web. The ‘content of site’ was the most frequently occurring criterion for evaluating health-related websites. Various authors have suggested what should be included in the content of a health-related site. Wilkas (2002) suggested authority, coverage, accuracy, currency and quality of writing are all important factors.
As both adults and children may search for information from a hospital website before a child’s admission, consideration should be given to what children consider to be important. This is in line with standard 3 on family-centred services in the National Service Framework for Children, Young People and Maternity Services (DH, 2004).
To achieve this criterion, the appraisal tool (Appendix 1) was developed from Smith and Callery (2005). They used the ‘write and draw’ technique to collect the views of 7-11 year-olds on pre-operative information needs. From this study, Smith and Callery (2005) outlined 61 questions that children asked and these were further classified under the following headings in Box 1:
Box 1. Information needs that children considered important (Smith and Callery, 2005)
The nine headings in Box 1 were used for the appraisal tool. Hospital websites were examined using this tool to determine the extent of information available to children and their families. The study therefore aimed to determine if the information available met the criteria of information that children actually wanted.
Each website was assessed for two elements: whether information was provided for the child or adolescent; and whether information was provided for the parent to pass on to their child. If a hospital had only one information page (intended for both children and parents) then that was recorded in a separate child and parent column but if the information was written in child-specific language then that was recorded in a column of child-specific information. This is similar to assessing coverage, described by Cooke (2001).
In addition, following the example of Boyington et al (2006), a note was made of the accessibility and visibility of the information on the website:
Very accessible – having to click through one or two pages;
Moderately accessible – having to click through three pages;
Somewhat accessible – having to click through four pages;
Minimally accessible – having to click through five pages;
Absent – having to click through six or more pages.
The data was collected in April 2007 and a further check was made in July. Hospital websites that did not have a separate section for children or children and families in April still did not have a separate section for them in July, so the data remained valid.
The websites of five hospitals in the study were used to trial the appraisal tool. As not all sites included in the pilot had information for children it was decided that it would be difficult to achieve the study’s third objective.
Validity and reliability
The use of an appraisal tool adapted from previous research (Smith and Callery, 2005) helped to ensure the questions were valid. Although content validity suggests that experts are consulted regarding the data collection tool, in this study the experts could be considered to be the children who stated the information they wanted in Smith and Callery’s (2005) research.
The researcher could be biased in interpreting the information that is sourced. So although the research was undertaken as a ‘one-shot’ survey, it was designed so it could be repeated at a later stage, thus enhancing reliability.
Only nine (28.1%) hospitals had an active section of their website for children or children and their families. These are examined more closely later.
The remaining 23 (71.9%) websites had no separate section for children or children and families. One of the 23 sites identified stated that it was ‘currently under construction’ but appeared to have clearly considered the need for a separate child section. Of the remaining 22 (68.8%) with no separate section for these groups, five gave information regarding visiting on children’s wards, and one other trust gave visiting times for adult wards but not children’s. These websites were not analysed further.
Of the nine that did have a separate section for children or children and families, one was a specialist children’s hospital and three were specialist hospitals that admitted children. Therefore only five of the 26 (19.2%) general hospital trusts provided a separate section for these groups, although one of these had specialist children’s services/children’s hospital within the trust. The numbers in each category were considered to be too small to undertake tests of significance.
Of the nine that did have a separate section for children or children and families, only one specialist children’s hospital and one other specialist hospital admitting children provided information specifically for them. The remaining seven (two specialist and five generalist) provided information specifically tailored for parents (carers).
Regarding the nine themes identified by Smith and Callery (2005), few websites addressed the issues the children requested, although many did provide additional information. Those issues addressed are outlined in Table 1 below.
Table 1. Information provided by trusts
|Specialist with children’s info)||Specialist||Specialist||General (with integral children’s hospital)||General||General||General||General|
The route to finding information on websites was variable and no standard route or tree/branch system was used. From the home page, four websites had a route that included the word ‘patient’ whereas one had ‘visiting us’, two (including the specialist children’s hospital) had child/parents/families as their first route, and two had children’s information listed under services (one of which had information for adults listed under patients).
Even after various initial routes were taken from the home page, it was still important to determine how many steps it took to reach the relevant information. Including the home page, the specialist children’s hospital took two steps, four took three steps and the remaining four took four steps.
Before undertaking the study an assumption (later demonstrated not to be true) was that all trusts would have a separate section of their website for planned admissions for children. The results clearly demonstrated that the majority (71.9%) did not have this, although this study did not set out to determine the reasons for lack of separate provision of information.
Over the years child health professionals across the UK have campaigned to ensure that children’s services are appropriate for children and their families and that services are in line with current policy. As hospital trust websites are relatively new, and many are still developing, there is scope for many in London to reconsider whether their websites do meet children’s and families’ needs.
Although nine (28.1%) websites did appear to have a separate section for children and families, only two (6.3%) had a separate one specifically for children. The information contained on those sites was variable in terms of the amount and whether it addressed issues that children had identified as important (Table 1). It is not clear why some websites provided more comprehensive information for children and families.
Some of the specialist hospitals were able to provide specific information on certain medical conditions (Table 1), although in one case at the time, to access this at home the computer would have required an Adobe reader as the documents were in Portable Document Format (PDF). While many more homes now have this, it cannot be assumed that families have an Adobe reader. However, some of these documents did appear to be the same documents that were sent to children and their families before a child’s admission, and therefore some hospitals may not have deemed it necessary or may even have considered it inappropriate to place such information on their website.
It has already been noted that three of the five specialist hospitals that admit children and the one specialist children’s service had separate sections for children or children and their families. Four of the five specialist hospitals that admitted children had a total bed number (adult plus child) that was smaller than most of the general ones. The total number of beds of the specialist hospitals therefore should not make a difference to the quality of information for children and their families on their website.
There was no one consistent route to finding relevant information on the websites, although the number of steps was fairly consistent. It is perhaps not surprising that the one specialist children’s trust took only two steps for the children and/or their families to find information. This is rated as very accessible by Boyington et al (2006). It is easier for such a specialist children’s service to direct children and families straight to where they wish to visit. Four hospitals took three steps and the remaining four took four. According to Boyington et al (2006), this means the information is moderately accessible and somewhat accessible respectively.
This is encouraging, in that the scant amount of information accessible to children and/or their families is not too difficult to find. However, many children and families may have spent some time searching for information that was not present, as indicated by 23 of the 32 sites that did not provide a specific section for these groups.
The research focused on children with a planned admission and therefore did not examine information for those admitted as an emergency or with a mental health problem. Including children in these categories may have yielded different results.
It is possible that websites can change quickly (equally, they can quickly become outdated), so information given on one day may have changed the following day. The results therefore only represent the time when the data was collected.
The research examined trusts within the NHS London region and therefore only gives a view of London. This may or may not represent the rest of England or even the UK, as the capital has several specialist hospitals that admit children as well as specialist children’s hospitals. Generalising the findings to other NHS regions may not therefore be appropriate.
This survey examined only the information available on hospital websites. It did not determine who the author was. The author(s) may have been webmasters, a specially convened ‘website committee’ or the webmaster may have obtained information from a designated person within each directorate, such as a modern matron. The type of author may have influenced the amount or quality of information on the site.
Implications for practice
Children and their families have a right to receive information (DH, 2004). This can be given in a variety of forms but if trusts intend to provide information on their website then it should as a minimum meet the requirements set out in the NSF for children (DH, 2004), or equivalent for Wales or Scotland. Good practice would ensure the information was appropriate and met children’s information needs (Smith and Callery, 2005).
Meanwhile, children’s nurses could encourage their modern matrons (or equivalent) and trust webmasters to consider the information available on their website. This could be achieved through discussion in team meetings. Modern matrons could work with trust webmasters to ensure there is a child-friendly section of the website.
With regard to the study, a larger population may enable significance tests to be undertaken. A separate study interviewing webmasters/web authors would determine whether trusts had restrictions with resources, amount of time or finance available to fund their sites.
A national guideline on the minimum standard of information provided to children and families could be formulated, with children and young people involved. This descriptive survey could be repeated at a later date (for example, in two years’ time) to determine if the information had changed significantly, or was different for other regions.
The internet is a relatively new development and hospital trusts are now uploading some information onto their websites. However, with regard to children’s pre-admission needs, very few hospital trusts in London have provided them with information that they consider important.
In addition, the route to accessing information on websites is variable and some children and families may not have a sufficient understanding of healthcare or NHS terminology to navigate their way through some of the sites.
Proposals have been made for a minimum standard for trusts to provide children and families with pre-operative and pre-admission information. Trusts should ensure that this information meets the needs identified by children and their families.
I would like to thank Lucy Bray for permission to use the subject headings from Smith and Callery (2005).
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Appendix 1. The Appraisal tool
The topics for this appraisal tool have arisen from the question that Smith and Callery (2005) asked: ‘What would you like to know about being in hospital?’
Will an explanation be given to the child and family on admission to hospital?
Procedures to expect
Any anaesthesia/pain relief
Length of time of procedure
Hospital environment (what to expect in layout)
Family support available
Feelings/pain after the procedure
The medical condition
Concerns the child/family may have with regard to admission or procedures