Chapter 37. Information is the key to empowerment
E. Alan Glasper, Cathryn Battrick and Tom C.A. Hain
LEARNING OUTCOMES
• Define empowerment in the context of health promotion.
• Consider the importance of providing information to support family-centred and self-care.
• Understand key issues raised in the Bristol Inquiry related to information giving.
• Review current initiatives in the field of consumer health information.
• Identify quality criteria for health information.
• Appreciate the role of NHS Direct Online.
Introduction
There is growing recognition in the UK of the need for healthcare professionals to improve the way they communicate with patients and the public. There is also acknowledgement that written and other information resources play an increasingly important role in modern health care, with a focus on empowering service users. Such information needs to be developed with service users and, where possible, with children themselves, and needs to be of the highest standards. The report of the Bristol Inquiry (Department of Health (DoH) 2001), which is perhaps the most in-depth analysis of a modern health service and its systems, made a number of key recommendations for improving communication. As a consequence, many national initiatives have emerged.
Empowerment
The term ‘empowerment’ has become somewhat of a buzz word, yet it is often misunderstood or used as a euphemism for any strategy that saves nursing time. The term stems from the Latin word potere, meaning ‘to be able’ and is also linked to the word potent, meaning ‘powerful, cogent, persuasive and having or exercising a great influence’.
However, the rhetoric of empowerment is somewhat different from the concreteness of strategies of empowerment that purport to enable people to make health-related decisions. Although the pursuit of empowerment strategies by nurses is a relatively recent phenomenon, it has become an integral component of advocacy. The term ‘empowerment’ is appealing perhaps because it conjures up images of power and independence. The nursing profession has embraced advocacy as a method of promoting family-centred care but the methods of achieving its implementation have changed considerably over the years. From a position of interceding or pleading a case for families, children’s nurses now act as guardians for their rights to autonomy and free choice. Indeed, current health promotion ideology accepts empowerment as enabling and supporting people to set their own health agendas and to take control of their health status through skills development and critical consciousness-raising (Glasper & McWilliams 1998).
Although there have been many innovations in patient advocacy, and empowerment is a real force within the field of child care, it has to be stressed that patients and families are sometimes passive bystanders in the process and this results in inequalities in the healthcare professional–family relationship. Gann (1991) has stated that information giving is the key to empowerment and, if this is true, the provision of information will enhance the relationship between the professional and the family.
Patient-centred care
When considering the role of health information, it is important to place this in context within a framework for patient-centred care. In the late 1970s, the Planetree organisation, based in Connecticut, USA, pioneered a model for patient-centred care that is widely used today (Planetree 2003). Planetree states that its model is holistic and considers healing in all dimensions – mental, emotional, spiritual and social, as well as physical. It aims to maximise healthcare outcomes by integrating complementary medical therapies such as mind/body medicine and therapeutic massage with conventional medical therapies. Within the Planetree model a strand has developed that focuses on empowering patients through information and education. This is achieved through a variety of initiatives, including production of information tailored for the individual, collaborative conferences for patients and experts and the development of patient-care pathways. Many similar initiatives based on Planetree have since emerged in the UK.
The Bristol Royal Infirmary Inquiry (2000)
Close to 200 recommendations were made following the national, public ‘Bristol Inquiry’ (DoH 2000a). Many of the key recommendations relate to the means through which information is obtained and communicated to children and their families (Box 37.1). It is important to consider these in context. The main issues leading to the national public inquiry are clarified in the summary document itself.
www
wwwRead the summary of the Bristol Inquiry Report online at:
Box 37.1 Key messages from the Bristol Inquiry
• Patients must be involved in decisions about their treatment and care, wherever possible (recommendation 1)
• Health professionals must adopt the notion of partnership, where the patient and professional meet as equals with different expertise (recommendation 3)
• Information about treatment and care should be given in a variety of forms, be given in stages and be reinforced over time (recommendation 4)
• Information should be tailored to the needs, circumstances and wishes of the individual (recommendation 5)
• Information should be based on the current available evidence and include a summary of the evidence and data, in a form which is comprehensible to patients (recommendation 6)
• Various modes of conveying information, whether leaflets, tapes, videos or CDs, should be regularly updated, and developed and piloted with the help of patients (recommendation 7)
• The public should receive guidance on those sources of information about health and health care on the internet which are reliable and of good quality: a kitemarking system should be developed (recommendation 9)
• Patients must be given such information as enables them to participate in their care (recommendation 12)
• Before embarking on any procedure, patients should be given an explanation of what is going to happen and, after the procedure, should be given the opportunity to review what has happened (recommendations 13, 16).
In the summary report, specific references are made to characteristics of the information made available to the families represented in the inquiry:
Such information as was given to parents was often partial, confusing and unclear … Patients should be able to gain access to information about relative performance of a hospital, or a particular service or consultant.
This illustrates the need for healthcare professionals to ensure all information is complete and clearly communicated. Nurses should be in a position to respond appropriately when asked by families for details of a hospital’s performance (such information may be provided within a Commission for Health Improvement report) as well as details related to clinicians’ performance.
Another key issue raised in the Bristol report is whether staff have the skills to communicate effectively:
All healthcare staff who treat children should be trained in communicating with young people and parents.
This statement implies that the content of basic and postgraduate training courses for many healthcare staff should be reviewed in light of the findings from the Bristol Inquiry. A number of communication-related training initiatives have since emerged. For example, the new NHS University is developing a communication skills module within its induction programme for all new NHS staff (NHSU 2004).
The Bristol Inquiry recommendations suggest that a range of information is usually required by the child and family, not only information about treatment and care, but also information that supports the child and family to deliver care for themselves. All information should be discussed face-to-face and information supporting such discussion should be made available, at least in written format. Where multimedia resources exist, these may add considerably to the usefulness of the resource (for example, a video/DVD demonstrating the use of a piece of equipment such as an inhaler can be a very useful aid).
Following the Bristol Inquiry report, other key initiatives illustrate the stronger focus for information provision in the context of empowerment and advocacy. Included are the Children’s National Service framework (DoH 2003) and the Welsh Children’s Commissioner’s report ‘Telling concerns’ (Children’s Commissioner for Wales 2003).
Children’s National Service Framework (2003)
In April 2003, the DoH published the Children’s National Service Framework for hospital standards (DoH 2003). This is one of a range of Millenium child health polices which pertain to children’s nursing. It is recognised within this seminal document that children and their parents should be given support and information to enable them to understand and cope with the illness or injury, and the treatment needed. The document indicates that there will be a greater focus on delivering better information: for children, young people and their parents on health and health services, and how to access them; about children receiving care, through support of an integrated care pathway; to support clinical practice; and for monitoring and continual improvement of services. Coles et al (2007) have however demonstrated that compliance by hospitals to policy recommendations varies enormously. Perhaps child health policy is only as good as the children’s nurse who delivers the standards of care embodied within them.
Children’s Commissioner for Wales report (2003)
The ‘Telling concerns’ report (Children’s Commissioner for Wales 2003) considers how far systems for complaints, whistle blowing and advocacy are effective in safeguarding and promoting the rights and welfare of children in Wales. Relating to complaints and representation of children, the report recommends that local authority social services should continue to involve children and young people in the review and future design of information material (recommendation 3.7). In relation to advocacy, the report states that local authority social services, in partnership with the advocacy provider, should continue to involve children and young people in the production of any publicity materials (recommendation 5.17).
The growth of consumer health information as a specialism
Patient organisations have in many ways been leading the development of health information services for a number of years, responding particularly to information needs unmet by the NHS. Sophisticated information services will provide a range of information in a variety of formats and often in different languages. A number of national information services have developed rapidly over the last decade. When supporting the child and family in obtaining current information to support health needs, the nurse is now able to draw upon a number of services available nationally. Examples of these services are summarised in this chapter and NHS Direct Online (http://www.nhsdirect.nhs.uk), is now considered by many to be the lead organisation in the field of consumer health information.
Patient organisations and self-help groups
Patient organisations and self-help groups have a rich history of providing combined information services for specific target audiences. For example, people with cancer can use specialist telephone advice services provided by CancerBacup (http://www.cancerbacup.org.uk) or Macmillan Cancer Relief (http://www.macmillan.org.uk). Through such services, users can access further information in leaflet format or via the internet. However, although the aforementioned services are recognised as leaders in their field, the quality of similar services can be variable and the nurse should take time to review exactly what is being provided before recommending such services to families. Some hospitals such as the Oxford children’s hospital have established sophisticated mechanisms for involving children and young people in developing information-giving strategies. Their young people’s executive known as yippee (http://www.oxfordradcliffe.nhs.uk/getinvolved/YiPpEe/yippee_home.aspx) have developed an information booklet for children and young people in hospital called ‘Young Voices’. The booklet includes personal stories of children who have been patients and information about the hospital and the staff who work there.
The Commission for Patient and Public Involvement in Health (CPPIH) was established in January 2003 to set up and support Patients’ Forums. This was abolished on the 31 March 2008 when Patients’ Forums were replaced by Local Involvement Networks (LINks) (Glasper 2008). LINks are designed to give citizens a stronger voice in how their health and social care services are delivered. They are run by local individuals and groups and their role is to ascertain what people want from their local health services. Each local authority (that provides social services) has been given funding and is under a legal duty to make contractual arrangements that enable LINk activities to take place. Evidence relating to the consultation activities of patient organisations with children and their families is evaluated during audits of compliance to healthcare policies.
Telephone services
The telephone, mainly through NHS Direct, now plays a very significant role in healthcare provision throughout the UK. Nurses can develop telephone skills that will allow them to give information, communicated clearly to a client at the other end. There are currently 22 NHS Direct call centres across the UK, providing a round-the-clock national telephone advice service. Some 6 million calls are taken through this service each year, a figure that is expected to rise to around 15 million.
Internet services
NHS Direct Online was launched by the Prime Minister in December 1999. A range of databases covering health topics is available 24 hours a day, and receives more than 450,000 visitors each month. Users of NHS Direct Online are able to access a number of databases to obtain information about health and health services and current health news items. In the future, users will also be able to develop personal space for information.
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wwwVisit the NHS Direct Online website and consider how the information available may be of use to a child (and the family) that you are currently looking after:
NHS direct online (http://www.nhsdirect.nhs.uk)
NHS Direct Online is a website providing high-quality health information and advice for the people of England. It is unique in being supported by a 24-hour nurse advice and information helpline. NHS Direct Online is viewed as the public interface with the NHS, providing health information, advice and appropriate use of NHS resources (Jenkins & Gann 2002).
NHS Direct Online has become one of the most popular websites in the UK, with around half a million people now visiting the website each month. It has established itself as Europe’s leading health website (Jenkins & Gann 2003). This was recognised in May 2003 when it won the eHealth Europe award for empowering citizens in management of health and well-being at the European Commission in Brussels.
History
The government introduced ‘The NHS Plan’ as a plan for investment with sustained increase in funding to reform the NHS. The vision was to give the people of Britain a health service fit for the 21st century: a health service built around the needs of the patient (DoH 2000b). The need for a knowledge (information)-based NHS is a political imperative. The national strategic programme (DoH 2000c) is concerned with major developments in the use of information technology within the NHS, including development of services using electronic communications. The government’s vision is for information and IT to connect delivery of ‘The NHS Plan’ with the capabilities of modern information technologies. As a result, December 1999 saw further diversification of the services provided by NHS Direct with the launch of NHS Direct Online (http://www.nhsdirect.nhs.uk). The aim of this site is to provide a gateway to high-quality and reliable health information and advice (for clients and public in England) on the internet (Nicholas et al 2002). NHS Direct Online provides multichannel access and is made up of several components, which aim to deliver information with a high level of user involvement.
NHS Direct Online provides public access to a variety of topics and users can benefit from information services including the following:
Activity
• Online encyclopaedia: this is a comprehensive guide to over 600 common medical conditions. The encyclopaedia contains sections on diagnosis and treatments along with explanatory diagrams and images.
• Self-help guide: an interactive, easy-to-use guide to treating common health problems at home. A ‘body key’ helps you identify your symptoms, then by answering simple step questions, you will be advised what to do next. The guide is also available in book form and is distributed through a variety of routes including pharmacies, doctors’ surgeries, supermarkets and ‘new mother’ packs.
• Local NHS services: a searchable database of hospitals and community health services, GPs, dentists, opticians and pharmacies in England. Addresses, telephone numbers, opening times and location maps are just some of the details provided. There are also contact details for all Health Authorities and NHS Trusts in England.
• Other links: this section hosts a directory of links to selected websites and other resources for a range of medical conditions where the user can seek further advice and information.
• Audio clips: for users who would like to listen to information, there is a selection of the College of Health’s audio files in RealAudio format. To access this type ‘audio clip’ into the search box.
• Hot topics: this section offers up-to-date information on the latest health issues. NHS Direct Online provides an important role in disseminating information to the public in the event of a health scare.
• Health information enquiry service: this is a very practical and popular health information enquiry service. The user completes a simple form, which is then researched by a health information professional. To maintain confidentiality, the user is allocated a password and, within 5 working days, is notified by e-mail that the information is ready. The user can access the information they requested by entering their previously allocated password.
• FAQs: this section contains the site’s most frequently asked questions about health and health care. The most frequently asked questions and answers on child health include:
• feeding/weaning
• childhood vaccinations
• how to reduce the risk of cot death.
• HealthSpace: this is a personal ‘health organiser’ created in a secure environment on the internet, in which users can record key personal health information (e.g. blood group, medication, allergies, appointments) and care wishes (e.g. organ donation, birth plans). HealthSpace can act as a ‘postbox’ for health news of interest to the user and for responses to health information requests submitted to the website’s online enquiry service. Password permission to a user’s HealthSpace could be shared with a partner, carer or doctor if they wished. NHS Direct Online is now working with the national programme for IT to develop HealthSpace as a web portal through which patients can access their electronic NHS records (Gann 2003).
• NHS Direct digital TV: this health information service in the interactive area on digital TV became available at the end of 2004. It offers information about:
• the NHS Direct services, details of local NHS services, national bodies, voluntary organisations and patient groups
• health information on illnesses and conditions, tests, treatments and operations, self-care advice and medicines
• healthy living
• hot topics on current health issues.
ActivityExplore the NHS Direct Online ‘body key’. Do you find it easy to use?
Clinical governance
To maintain the information on the site, topics are regularly reviewed and updated. The NHS Direct Online Editorial Board acts as a single editorial board for NHS Direct Online content whether in a web, information point, digital TV or print format. The editorial board is responsible for:
• a consistent editorial policy across NHS Direct Online
• prioritising content development
• commissioning content from third parties
• quality assurance of content
• reviewing users’ suggestions for new content
• ensuring consistency with other NHS websites
• ensuring synergy with the NHS Direct telephone service.
The 21st-century patient
Nurses have a long history of ‘being there’ for people who are in need of health care (Cudney & Weinert 2000) and there is an opportunity for nurses to reach those people who may be isolated. Although the internet is not a new medium, it can be considered contemporary for the delivery of nursing/health care and is an innovative way of providing support, education and reassurance. There are many websites and chat environments where people exchange ideas and opinions on health related issues; however, their validity and reliability could be open to question and depends on the ‘ownership’ of the chat platform. As NHS Direct and NHS Direct Online are extensions of the NHS, they can instil confidence and trust.
Activity
ActivityAccess the NHS Direct Online site and challenge it with a number of child-health-related questions. Discuss how efficient you thought the system was in your learning group.
Television services
In 2001, the DoH piloted information services, delivered by television, to explore the use of new interactive technologies (Dick, 2001 and Hain, 2001). The pilot services included the following:
• Appointment booking: where viewers can book appointments with their GP via the TV
• Text service: where thousands of pages of health information can be accessed, working in a similar way to a conventional teletext service
• Health videos: seven half-hour programmes for pregnant women and new mothers are all screened daily. Each programme deals with a different stage of pregnancy. The viewer is able to see the video relevant to her specific period of pregnancy
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