Identifying information for child and maternity health

Manager of the Centre for Health Information Quality, The Help for Health Trust, Highcroft, Romsey Road, Winchester, Hampshire SO22 5DH, UK. E‐mail: thain@chiq.org

Introduction

‘Information is absolutely fundamental to choice… Information is the key to building trusting relationships and is essential to enable individuals to stay healthy’. ¹

If it is the case that information is fundamental to choice, then it is essential that users of children's and maternity services have access to useful information and information services. This article describes a recent study designed to identify such resources. Users, communicators and producers of information found these to be of significant help to them.

The aim of the study was principally to identify useful information resources and knowledge services for users of children's and maternity services. The target group for the study was users, communicators and producers of information for children and maternity services. A questionnaire survey was undertaken involving representatives of the target groups. Supportive data was obtained through interviews with key professionals.

The study identified:

• • Eighty‐eight information resources
• • Indicators of quality accompanying information
• • Gaps where more information could be made available
• • Services through which this information should be available

In addition, recommendations were made for further work to help ensure the public and professionals in health and social care have equal access to knowledge resources which demonstrate high standards of quality. Specific recommendations include (a) involvement of information service staff in research, and (b) focus on the production and dissemination of user guides to health and social care services.

Background

In April 2003, the Department of Health for England published the Children's National Service Framework for hospital standards. ² Key issues are raised around ‘delivering better information: for children, young people and their parents on health and health services, and how to access them’.

Following this, in December 2003, The Help for Health Trust was commissioned by NHS Direct Online to undertake a 4‐month project to scope existing provision of high quality knowledge services relevant to child health and maternity services, on behalf of the National Knowledge Service.

Study methodology

The study was undertaken by staff of the Trust's Centre for Health Information Quality, with support from a project Steering Group, and comprising three distinct activities:

• • a questionnaire‐based survey with users, communicators and producers of information
• • semi‐structured interviews with key professionals
• • analysis and development of data.

For the purposes of the study, the following definitions of target audiences were used. User: an individual requiring information for his/her personal health gain, or health gain of a member of his/her family. Communicator: an individual requiring information to support a face‐to‐face interaction with a user. Producer: a representative of an organization that specializes in the production of information resources.

A questionnaire‐based survey was the principle method used.

A call for participants was made, for each of three target groups: users, experts and producers of health information. The questionnaire was made available in electronic and print formats. Fifty‐nine completed questionnaires were subsequently received.

The Steering Group developed an interview schedule, and 11 key professionals were identified and invited to participate. Seven responded positively, and six interviews were undertaken with key professionals involved.

To ensure appropriate comparison of data, an equal number of questionnaires (n = 11) from each target group was analysed.

Data yielded from the questionnaire was often incomplete. This meant that while a resource was identified, other associated details were either incomplete or simply missing. As a critical feature of the project was to provide a resource that could be used outside the study, further analysis and development of the data was required.

Support for the study

A Steering Group was formed to lead the work programme. This group held an initial teleconference, during which a list of stakeholders to be invited to participate in the study was agreed. The group met once more during the project period.

A key feature of this project was the significant support offered from interested parties. Where offers fitted with time and resource constraints these were followed up.

Many assisted simply by circulating details to colleagues. Other organizations, while not offering direct support in the survey, were keen to be involved in other ways. For example:

• • The Child Health Branch of the National Electronic Library for Health assisted by placing details of the survey on their website with a link directly to the CHIQ website
• • Great Ormond Street Children's Hospital – the Health Information and Language Manager (also project Steering Group member) offered to circulate questionnaire with users, through a local Patient Advice and Liaison Service.

Information for users of children's and maternity services

Full details of all the resources identified in the 33 questionnaires analysed. Where the subject areas were similar, the resources were divided into categories, with ‘condition‐specific’ being the most common category.

The following details are identified for each resource:

• • Title of resource
• • Description
• • Format, e.g. leaflet, website
• • Link to website (where applicable)
• • Any indicators of quality
• • Who provides the resource?
• • Who produces the resource?
• • How to access the resource
• • Cost to the user (if any)
• • Who recommended the resource (user/producer/communicator)

This creates a list of resources that can form part of a complete sign‐posting service for users. With the details described above, the user can immediately make an informed assessment of the resource.

The professionals interviewed were asked what the most important topics were. The following responses were given:

• • Immunization. General information, e.g. coughs and colds
• • Things other than health, e.g. housing
• • Conception to 5 years: which professional does what?
• • How the services work, e.g. cross boundary issues
• • Re. children: Vaccinations, diet, weaning, current disease, viral infections, bronchiolitis, common and acute illness
• • Re. maternity: Triple test, antenatal care, bleeding in pregnancy, maternity record, results of tests

From this, it is interesting to note that half of the interviewees indicated the most important topics were not about health, but related to health. For instance, there was concern about the lack of information about housing, the roles of different professionals and how services work across boundaries.

Quality indicators

Increasingly, health information resources demonstrate a commitment to quality by displaying a logo representing a relationship with an independent agency.

A number of quality indicators were cited by respondents to the questionnaire. This does not include those quality assurance indicators cited which were also cited as the producer of the resource.

During analysis it became clear that there is a wide variance in the type of quality assurance process adopted by producers. In many cases, the quality assurance process is not carried out by an independent agent. This could be regarded as misleading to users of the service.

Gaps in information provision

The study identified where it is considered there is insufficient or no information available.

With the small samples involved, it is not possible to draw firm conclusions, however, it is interesting to note references to information that is for, but not about health, such as, ‘how to use services’ and issues around maternity leave.

Responses from the users group identified a lack of information in the following areas:

• • Adolescent health
• • Patient experiences as users of a service
• • How to access services you need
• • Weaning

One respondent states

A list of doctors sympathetic to children with or in the process of being diagnosed with irritable bowel syndrome. ‘Our son is 13 years old and it's taken 8 years to find one! The difference in him is remarkable just knowing someone in the medical profession believes him’.

In addition, comments were made that the NHS provides conflicting and untrue information on home birth and breastfeeding.

Responses from the communicators’ group identified a lack of information related to:

• • Maternity leave rights and paternity leave and parental leave
• • Baby‐feeding information that is not produced by artificial food milk manufacturers
• • Up‐to‐date information (post‐1996) on safe infant care practices based on national epidemiological case–control study of sudden infant deaths
• • Dental health – that is produced by non‐commercial companies
• • Ethnic language health information
• • Wolfe Parkinson's White Syndrome

Responses from the producers’ group identified a lack of information in the following areas:

• • Quality assured services
• • Good quality information for teenagers with respiratory disease
• • The importance of preconceptual care/management in relation to women with diabetes who intend to become or are pregnant
• • Cultivating disease resistance, including alternative schedules of vaccination
• • Options in optimizing early infant nutrition and maternal nutrition
• • Treatment of babies in special care units
• • Sleep problems
• • Assuring parental confidence in the transition to parenthood and caring for the newborn
• • A guide to health and social services for parents of children with long‐term/life‐threatening conditions
• • A national strategy to tackle UK's childhood obesity.

Information services

Once information has been identified and the quality has been evaluated, the next question then, is where should the information be available to reach its intended audience.

The target groups were given a list of services, and asked through which services they feel information should be made available. The preferred services were self‐help groups, patient organizations and health centres. One reason for this may be that these services are usually characterised with good opportunities for face‐to‐face support.

Conclusions/Recommendations

This small‐scale study identifies a number of preferred information resources, and a significant amount of detail for each of these. This provides users and communicators with most of the information required to make an immediate assessment of whether the resource meets their requirement. Further work is required to raise awareness of these and similar resources, and to understand more where services users are most likely to access the information.

Once the characteristics of further information and knowledge resources/services are identified, these should be cross‐referenced with the service user needs on the corresponding care pathways, for example, in the Children's National Service Framework. ²

There is widespread willingness from individuals and key agencies to be more closely involved with this type of study. In addition, many participants who registered for the survey are working within dedicated information services. It may be observed that these representatives are ideally positioned to assist with similar studies, and should be invited to join a virtual group to take further work forward.

While independent evaluation of information and information services should be considered essential, the quality of such evaluation can be variable. Clarity over the nature of the evaluation process should always be made clear.

There appears to be a lack of information about services themselves. There should be a focus on the development and dissemination of high‐quality guides to assist users to be able fully to understand the wide range of health and social services available, as well as the way these services work together.

The full report is available on the CHIQ website: http://www.chiq.org/chiqchildandmaternity.