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Supporting anxious parents in search of internet information.

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The National Service Framework for Children, Young People and Maternity Services (Department of Health, 2003) highlights the importance of sharing information with children and parents. It states that ‘children, young people and parents can only participate fully as partners in care if they have access to accurate information that is valid, relevant, up to date, timely, understandable and developmentally, ethically and culturally appropriate’.

Abstract

VOL: 102, ISSUE: 19, PAGE NO: 24

Jody Blake, BSc, RN, is helpline and information adviser, WellChild

The National Service Framework for Children, Young People and Maternity Services (Department of Health, 2003) highlights the importance of sharing information with children and parents. It states that ‘children, young people and parents can only participate fully as partners in care if they have access to accurate information that is valid, relevant, up to date, timely, understandable and developmentally, ethically and culturally appropriate’.

 

 

When parents are told that their child is sick, many understandably have a need to find out as much as possible about their child’s condition. This can be difficult and frustrating, particularly for parents who may not have access to information or do not know where to start looking. Nurses working in a range of clinical and other settings - whether in the community, on the ward or staffing helplines - therefore have an important role to play in ensuring that parents of sick children are as well informed as possible. This usually occurs via the provision of appropriate information or the offer of support and guidance as to how it might be accessed and from where and/or whom.

 

 

Increasingly, the internet is being recognised as an important source of such information. Indeed, nurses have for some time been familiar with the power and the pitfalls of internet information sourcing in support of their work. While some enter nurse training with internet skills, many are given the opportunity to learn and develop such skills through their pre-registration and post-registration training.

 

 

Recent research indicates that the potential for the nursing use of the internet has yet to be fulfilled (Morris-Docker et al, 2004). With the recent development of resources targeted for use by nurses, midwives and allied health professionals, the internet is a potentially invaluable tool in helping nurses support anxious parents.

 

 

The importance of information
The parental need for information when a child has been in contact with the healthcare system has been referred to as a primary need (Paul et al, 2004).

 

 

A lack of information at any stage of a child’s ill health can contribute to raised levels of stress and anxiety in parents.

 

 

Although information-seeking behaviour can be complex and is generally regarded as inadequately studied, Lazarus and Folkman’s transactional model of stress and coping is one approach that can be used to provide a helpful framework for understanding by nurses (Van der Molen, 1999). This model regards information-seeking as:

 

 

- The most common method of coping with stressful events, especially where information is lacking;

 

 

- Taking place within a reciprocal relationship between people and their environment;

 

 

- A form of cognitive control that facilitates a re-engagement with the process of decision-making;

 

 

- Opening up opportunities for supportive informational encounters with others, such as nurses and other allied healthcare professionals.

 

 

It is increasingly recognised that the diversity of backgrounds and presentations of patients, relatives and carers demand heightened awareness and sensitivity when entering a relationship centred around the provision and sharing of information. For example, age-appropriate forms of information will be required where this is to be passed on by parents to children. Also, parental levels of literacy and understanding should be sensitively assessed and not assumed. This issue is also important when support is offered through internet-based information. Despite common perceptions, not all families, homes or neighbourhoods can be assumed to have access to the internet, nor be internet literate.

 

 

Nursing uses of the internet
In order to provide guidance on how nurses can use the internet to support anxious parents, it is helpful to clarify the broad patterns of nursing internet use. The increasingly important role of nurses in the modernisation of the NHS, and in breaking down the barriers with medicine, places a greater emphasis on nurses as active decision-makers within a framework of evidence-based practice (Thompson et al, 2004). The three patterns of nursing use of the internet are:

 

 

- Research and education: nursing now draws upon an expanding evidence base, with research and lifelong learning increasingly taking place and being available online;

 

 

- Clinical: useful data and resources for evidence-based clinical practice are also now available through electronic, online means;

 

 

- Networks: online networks of support now commonly inhabit electronic spaces, with email-based helplines and bulletin boards, as well as the provision of gateways or portals for a wide range of, for example, condition-specific information.

 

 

There are, however, a range of problems that nurses report when seeking information from the internet, including:

 

 

- Limited availability of access;

 

 

- Limited time for searching;

 

 

- Lack of IT training;

 

 

- Lack of critical appraisal skills.

 

 

Not all nurses have access to the internet at work and those who have access at home are more likely to use it for pursuing their continuing professional development than for specific work-related enquiries (McCaughan et al, 2005).

 

 

These problems could be addressed through the provision of open access to the internet, as well as the use of informal and formal methods of support and training. Indeed, where such approaches were offered to ward-based nurses, internet use was found to be more readily integrated into their working day (Morris-Docker et al, 2004). However, primary care nurses have been found to favour personal experience and consultations with colleagues over online sources of information (McCaughan et al, 2005).

 

 

With nurses increasingly being employed in diverse work settings and sectors - for example ‘traditional’ wards, primary care in the community, private occupational nursing and voluntary sector helplines provision - the internet appears to have the potential to meet many of the information needs of modern nursing.

 

 

Nursing resources on the internet
For the potential of the nursing use of the internet to be realised, a further link in the chain of informational access is required - that of the existence and availability of a wide range of resources.

 

 

As the internet has expanded and matured, so the range of information available and the means of accessing it has followed suit. Numerous databases allow for easier searches of nursing and associated research, such as MEDLINE (free), CINAHL (subscription) or meta-searches through engines such as Ovid (subscription).

 

 

A multitude of websites are available freely or via subscription. Many professional organisations, NHS trusts, government departments and voluntary sector organisations have their own websites. Some include bulletin boards, weblogs, ‘emailable’ helplines and specialist archives of material. Extensive portals include the National Electronic Library for Health (www.nelh.nhs.uk), the National Library for Health (www.library.nhs.uk) and the WellChild children’s health portal (www.childrenshealth.org.uk).

 

 

One issue that remains outstanding is the quality of information on the internet. Where nurses might use such information in clinical settings, it is imperative that some form of quality control should be exercised. Innovations such as the online gateway NMAP (http://nmap.ac.uk) give nurses greater assurance that information has been evaluated and is of a high quality. NMAP was developed specifically for nurses, midwives and allied health professionals and allows access to websites, electronic journals and other relevant internet resources (Ward et al, 2004). The purpose of NMAP is that each resource is checked against quality criteria, which means that nurses do not have to spend time evaluating the material as they would do if they carry out a search on the internet using a general search engine.

 

 

Critical internet usage
Resources such as NMAP might not provide all the information that nurses need. Other informational resources could also be useful and relevant.

 

 

However, despite any potential benefits, there is much information on the internet that is incomplete, misleading and inaccurate (Ademiluyi et al, 2003). Education and training in the critical and reflective use of the internet is therefore essential (Box 1, p25).

 

 

This is widely offered through contemporary pre-registration and post-registration nurse training in higher education institutions. It is also available online, through such freely available resources as the virtual training suite on the internet for nursing, midwifery and health visiting site (www.vts.rdn.ac.uk and click on ‘Nursing, midwifery and health visiting’). NMAP also offers support on how to evaluate internet-based information sources (http://nmap.ac.uk/guidelines/eval/howto.html).

 

 

Case study
The WellChild helpline is a nurse-led service that offers accurate and up-to-date information about any aspect of children’s health or illness. The helpline welcomes enquiries from parents, carers, relatives, professionals, children and teenagers or anyone who needs help with any children’s health query or problem, however minor or complex. As well as providing a telephone service, the WellChild helpline responds to email and text enquiries.

 

 

The majority of the enquiries that the helpline receives are email enquiries. One recent example was from a mother whose five-year-old child had recently been diagnosed with epilepsy. She was feeling very isolated and felt that she needed some ongoing support. She also mentioned in her email that she felt that she would like the opportunity to be in contact with other parents who were in a similar situation.

 

 

The helpline responded by emailing her contact details and links to the websites of the epilepsy charities in the UK (Epilepsy Action and the National Society for Epilepsy) encouraged her to look at their websites, and to contact these charities to find out about the support they could offer her. The helpline also told her about support groups that these charities run and their online communities that could give her the opportunity to be in touch with other parents who also have a child with a diagnosis of epilepsy. She responded very quickly saying that she had no idea these charities existed and only wished she had been told about them months before.

 

 

When the helpline receives a telephone enquiry from a parent looking for further information, the helpline adviser will always ask if they have access to the internet. If they do, the helpline will then direct them to accurate information on the internet. If they do not have access, the helpline will send information to them.

 

 

Conclusion
Parental uncertainty and anxiety is easily transmitted to sick children, and can impede their recovery. The provision of information for parents can help them manage their anxiety. Parents often need more information than can be given in a consultation and at times to suit their current and developing needs and those of their child.

 

 

It is clear, though, that where nurses adopt a role in support of anxious parents, the critical use of internet information resources is highly valuable, especially when positioned alongside other aspects of nursing care provision.

 

 

As nurses work in increasingly diverse work settings, including helplines, they require more flexible access to information to support their evidence-based practice and the potential of nursing use of the internet has yet to be fully realised. This article has been double-blind peer-reviewed.

 

 

For related articles on this subject and links to relevant websites see www.nursingtimes.net

 

 

Learning objectives
Each week Nursing Times publishes a guided learning article with reflection points to help you with your CPD. After reading the article you should be able to:

 

 

- Know the information needs of parents with sick children;

 

 

- Understand the various functions that the internet can provide for nurses;

 

 

- Know the resources that are available for nurses on the internet;

 

 

- Familiarise yourself with the pitfalls of sourcing information on the internet.

 

 

Guided reflection
Use the following points to write a reflection for your PREP portfolio:

 

 

- Detail your place of work and why this article is relevant to you;

 

 

- Outline a recent clinical experience where you could have used the internet;

 

 

- Highlight a new piece of information you have learnt from this article;

 

 

- Explain how you could use this in your future practice;

 

 

- Discuss how you will disseminate what you have learnt to your colleagues.

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