Feature

But the doctors aren’t your mum

If users are to become involved in planning health services, then why shouldn’t children have their say too? Eva Elliott and Ali Watson seek the views of younger users

If the media form a lens through which we view current social preoccupations, then it would appear that we are very concerned about children. News bulletins unfailingly cover stories about children abused, neglected or abandoned by parents, families or institutions. Discussions abound with moral pronouncements about the need to return to ‘traditional’ family values and structures, and to protect children from sex and violence on film, television and the Internet. And alongside these concerns, a related issue is emerging — that the views of children themselves need to be heard and taken seriously.

The legal status of children as independent citizens was enshrined by the Children Act 1989 and the recognition that children have a right to be heard has been extended, albeit slowly, to the health services. While the NHS Executive’s Local Voices: the views of local people in purchasing for health and Patient Partnership: building a collaborative strategy did not refer to children directly, and consultation tended to rely on parents or carers as proxies, the Welfare of Children and Young People in Hospitaland the more recent Patient’s Charter and Services for Children and Young People have made provision for children’s voices to be heard. A recent BMJ editorial said that ‘children and young people should have all the information they need to enable them to participate in their own healthcare’.

It is but a short step from recognising that children should play a part in decisions relating to their own healthcare, to the recognition that children’s views ought to be taken into account in planning and policy development.

It is in this context that Salford & Trafford health authority asked researchers from the Public Health Research & Resource Centre to interview children and young people as a part of a consultation process over plans to reconfigure existing children’s health services.

Last October, with the support of the education authorities, we were ready to interview local children. Despite logistical problems — deadlines and the schools’ half-term — we were able to organise visits to six schools: four primary and two secondary. Without the enthusiasm and support of their teachers and pupils, the project would not have been possible.

In total we did 21 group interviews involving more than 200 children aged 4-16. There was no time to develop sophisticated methods. We used a topic guide and tape recorder which, for the younger groups, prompted much excitement. We found ourselves in a variety of what would normally be considered unfavourable interviewing conditions. But this may have worked in our favour; young children were unlikely to see us as awesome figures of authority if we were squatting with them in a corridor. The teenagers also appeared to enjoy the opportunity to talk — and, perhaps, to miss lessons.

This was what some would see as a ‘quick and dirty’ research exercise, and yet the information collected was both rich and illuminating. Several strong themes emerged, which appeared common to all age groups and across localities.

Children disliked being ‘ignored’ by health professionals. Even young children felt that doctors should include them in discussions about their health. They not only felt ‘shut out’ if doctors spoke only to their parents, but also thought that doctors couldn’t know what was wrong with them if they failed to ask them directly. ‘After all’, said one eight-year-old, ‘I’m the one in pain.’ Older children (or near adults) felt that they were ignored and often not believed, or that their complaints were seen as trivial. They put this down to the fact that while they were no longer seen as small and sweet, they were not considered old enough to be trusted as responsible adults. ‘When you’re little they’re nice to you because you’re little and cute, but when you’re older they don’t take much notice of you.’

Most children thought doctors used over-complicated terminology and that they should explain what they meant in laypersons’ language. Children also wanted more thorough explanations about diagnoses and treatment options. Incomplete explanations only increased their feelings of being kept in the dark.

The children we spoke to had a number of concerns about the ways in which treatment was given. They disliked, and were sensitive to, being physically manipulated or having things done to them in ways which felt invasive or intrusive. There was a very general dislike of being ‘prodded and poked about’, especially if they couldn’t see any point to it. This was true even of seemingly innocuous procedures such as the use of stethoscopes, and was particularly the case with injections or ‘needles’.

Hospitals, in particular, were seen by some children who had stayed there as settings in which intrusive and invasive things happened. Their accounts uncovered feelings of fear towards the various devices to which they were attached. Having an operation was seen as particularly fearful, as well as shrouded in mystery.

Whatever procedures were carried out, children felt better about them if their fears were recognised, understood and dealt with. This included letting children hold or play with an instrument such as a stethoscope, rewarding them for acts of bravery such as having an injection, and allowing close relatives to stay with them while they were undergoing treatment hospital.

All children and young people acknowledged the value of the role of ‘care’ in the process of ‘treatment’. If they were ill they wanted to be ‘tucked up in bed’ or ‘wrapped up warm and pampered’. Close relatives were seen as performing vital tasks in the process of their recovery, and sometimes their healthcare skills were seen to be greater than the professionals’. One seven-year-old said: ’The doctors don’t do you any good because the doctors aren’t your mum.’

It was because of this need to be in a safe environment that many children said they would prefer to be at home, if they were ill, rather than in hospital. Some also said that at home they felt more confident to express their views. The reasons for preferring home were well put by one 15-year-old: ‘I prefer home, definitely,’ he said. ‘You’ve got your mum and dad there and your friends come round and keep you company and all that. You’re on your own area too, aren’t you? You know everyone round there. No strangers.’

For some children, hospital had been a positive experience. For others, their memories were of a large, anonymous, strange and authoritarian institution which could be both dull and frightening. These feelings of loneliness, boredom and fear were reduced by access to frequent visitors, enjoyable activities and sympathetic staff.

Nevertheless there was also a perception that hospitals were centres of expertise, prompting some reservations about the value of home treatment: one seven-year-old thought it was better to be treated at hospital because ‘you could die at home’. This concern about the withdrawal of access to expertise was summed up by a 15-year-old girl who had had regular hospital treatment for asthma. She said: ‘If I had a really bad asthma attack I’d be scared so I’d want to be in hospital, but I’d want to be at home at the same time. But if there was someone at home like a nurse or something and I knew that she could deal with it, then I’d stay at home, because you’d know the surroundings and there’d be people with you.’

The children we interviewed had a great deal to say about their experiences and about the ways in which they felt local health services ought to be run. They talked about the things that kept them well, their views about primary healthcare services, the use of medicine, the roles that different health providers play, their preference for male or female doctors, and whom they prefer to ask for help and advice on health-related issues.

The research highlighted issues that could benefit from further exploration. For instance: the role that children can and do play in keeping themselves healthy; the provision of more appropriate, accessible and confidential information; the changing needs of children as they ‘grow up’; and the ways in which young people’s needs for social support in hospital could best be met.

Finally, a key issue that the research raised was the need to value the expertise that children have in respect of their own health. Children and young people are capable of formulating and expressing some very clear ideas about how local services are planned and delivered, and ways of accessing their views on a regular and on-going basis should certainly be explored. As health authorities start to involve ‘consumers’ in planning appropriate healthcare, then there is no good reason why the views of children should not also be included. Salford & Trafford is committed to their continuing involvement in the design and development of local health services.