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With comments from a young person’s perspective
In this paper I describe my own personal approach to children’s rights in health care. This has developed from apprenticeship to good role models, from listening to children,and from voluntary organisations which represent children. The National Children’s Bureau has been a valuable source of advice (www.ncb.org.uk).
The UN Convention on the Rights of the Child is an essential tool for individual health care as well as public health practice. Any paediatrician who peruses the Convention carefully will find many articles with health implications.1 Table 1 lists the essential health care related articles. I have asterisked the articles which are of relevance to every consultation with a child. The other articles are important because they impose an advocacy function on us as paediatricians.
I will deal with paediatric practice in relation to the clinic consultation, to the provision of information, to advocacy for children in difficulty, and to participation. Finally a mention is made of teaching in this field.
The chief principle underlying my practice is that of child autonomy and respect for the child’s separate identity. The child is as much a person as their parent and deserves respect and separate consideration. Children and young people (hereafter CYP) often say, “The doctor never spoke to me”. The child is the primary client and the parents secondary, though essential to the child’s wellbeing. This will not be new to most paediatricians.
Hence my aim is to communicate directly with the child in every consultation. This is regardless of age. The conversation begins with the child, though this can be limited if he or she is under 3—and some children do not open up easily. However, it is good practice, if not always easy, to engage with every child. Some parents keep interrupting and would like to give the history themselves; they have to be persuaded to wait their turn.
The child him or herself can provide much of the history as well as interests and views about school, which is a core interest in children’s lives.
Children and young people are honest with the doctor and don’t hold back on confidences as long as they trust you.
What about seeing children/young people on their own? My practice is to do this after the age of about 12, but take each case as it comes. It is always helpful to see a young person on their own and should be the norm after about 15, though each should be taken on merits.
It would be useful to have a notice up in the waiting area about confidentiality or perhaps a leaflet to give out to the CYP when they arrive, as it can be difficult to explain this each time.
When I have completed the assessment, I will inform both the child and the parent of my opinion and plan. Certain other issues may come up which may require advocacy: for example, discrimination, lack of services for a disabled child, exclusion from school, emotional abuse, bullying. Assistance may be offered if appropriate.
Young person’s commentary
I have highlighted certain areas of the article: bold is what I disagree with, italics what I agree with, and underlining something I have a question about.
I completely agree with Dr Waterston about the need for the child to be the primary patient and not the parents. I also agree that information on confidentiality should be more readily available and easily accessible to children and young people (CYP); from my experiences I have found that this is not so and have often become confused about what the law says my rights are. From a political level I also agree that there should be a ban on smacking, and a close eye kept on health and travel aspects of life, as this greatly concerns CYP. I have found that many doctors or nurses don’t know how to approach talking to YP—teenagers in particular—and I feel it should be an invaluable part of their training to look into things like this, as the author suggested.
However I did disagree on two points with the author. If a letter is sent out about someone who is 16 or older then I feel that it isn’t right to send it to the parents. I feel that if the YP is able to give consent for treatment at that age they should have the decision about whether their parents are informed; this is a huge issue in confidentiality that needs to be addressed. Secondly, I disagree that schools should be contacted about bullying with the consent of the parent—what about the young person? They should give their consent as well, and what about if they want the school to be contacted and their parents don’t—does that mean they therefore will not get the help?
Finally, in underlined text, I have questioned two aspects: whether or not the child should attend the meeting about their bullying problem (with the headmaster); and whether the CYP have any influence in deciding what happens if they are being abused or if there is not influence there.
I don’t feel that there is anything missing from this piece about rights; they are clearly indicated at the beginning of the article that I found very helpful for reference.
A full discussion would be held with the CYP if consent is required. Children should be asked for their consent to immunisation and there isn’t normally a problem with them agreeing to do so.
The consultation may be used as a form of modelling to the parents about child participation. This means treating the CYP as a person worthy of respect. I like to model positive regard, in particular for the child with low self-esteem and the child on the receiving end of negative attitudes from the parent. The child should leave walking on air because they feel so good about themselves, and return happily on the next occasion. This means finding the right words to comment positively on their characteristics. Not all children have had this experience and they like it a lot. Remember they may use what you say with the parents afterwards, so one has to be sure not to say anything that isn’t true.
PROVISION OF INFORMATION
It is desirable to provide written information for the CYP about their condition and its management. For conditions such as ureteric reflux, a drawing is needed. However, children may require a longer explanation and there is a shortage of written information. There are several websites which are good sources of information (for example, Contact a Family, and the American Academy of Pediatrics), but these are not written for children themselves. Useful sources of information for parents and children are:
It is good practice to send a copy of the GP letter to the parents, and if the child is over 16 then I send a copy to them too. If the first language is not English, children should not interpret for their parents, even if they wish to do so.
CONTENT OF THE CONSULTATION
It is desirable to explore social issues in relation to children’s rights. Discrimination is common. Possible issues are: asylum seekers not receiving benefits; a disabled child not allowed to go on a school trip; or a child with learning difficulties bullied at school.
Articles 24, 27, and 28 are also relevant to the consultation. Access to health care may appear adequate, but there may be constraints owing to expense of transport and child care considerations. Language differences and judgemental attitudes by health staff can also reduce access by parents. I hold clinics in the most deprived areas of the city in order to reduce these constraints; this also facilitates multidisciplinary working. I will address Articles 27 and 28 in the next section.
ADVOCACY FOR CHILDREN IN DIFFICULTY
Advocacy is required in relation to bullying (Article 19), abuse and neglect (Article 19), provision of benefits and good housing (Article 27), and education (Article 28). The principles are the same for a number of other issues such as disability, racial discrimination, and refugee status. The list is almost endless and I can only take on what is realistic and achievable.
Bullying frequently comes up and is a significant concern. Do paediatricians have a role in tackling bullying? We have an obligation to do so and approaches are given in table 2.
Another concern is emotional abuse by a parent. As I see many children with emotional difficulties, I encounter parents who are extremely negative about their children. When does this become abusive? There needs to be some evidence that the child’s wellbeing is affected, either through behavioural difficulties which interfere with education, or through the development of symptoms such as self harming. The first approach should be to support the parents to help them to change their responses to be more positive towards the child while not condoning bad behaviour. Some parents, owing to their own poor experiences as children, are unable to do so, and then social services need to be brought in to assess the overall functioning of the family. In my experience this should be done sooner rather than later. Smacking is potentially abusive, but it is very common; advice on alternative non-violent means of discipline2 should be readily available.
Education is another key area for advocacy. Two key issues are the exclusion from school of a child with challenging behaviour, and the support of children with special educational needs. I have seen children who have been out of school not receiving significant education for over two years because of their behaviour. This is not acceptable. Such issues should be raised with the local education authority at a senior level. The same is true for children with disability, where an alliance with the educational psychology service is crucial.
Advocacy is also desirable at a political level. I have covered this elsewhere,3 but current issues where national advocacy is required are in legislation to ban corporal punishment of children in the home,4curbs on the marketing of convenience food to young children,5and traffic calming and traffic reduction programmes in residential areas.6
Promoting CYP participation is a central area within the UNCRC but still little practised in child health care. The current initiative of the RCPCH Research Unit is very welcome and a good example for others.7 Figure 1 illustrates the ladder of participation, which is a valuable aid.
The chief opportunity for most paediatricians to promote participation is in relation to the health care process. Is the young person asked for their opinion about treatment, and are they encouraged to make their own choice within a range of options? The parent may not always demonstrate this approach, so we need to assist them in this direction.
Participation in health care means that we should consult young patients about out patient and hospital provision and in particular, about the development of new facilities.8 This issue is highlighted in standard one (child centred services) of the National Service Framework on hospital services.9
There are many other opportunities for participation which will be organised outwith the health service: for example, in Newcastle a young people’s organisation carried out a consultation on young people’s views on health and health services in schools. This was published as a report which illustrated their view that organisation within the school was a greater threat to health than infections or cigarettes.10
TEACHING CHILDREN’S RIGHTS
It is essential that these ideas are incorporated in the theoretical and clinical teaching of paediatricians. Teaching material is now available11 and can be covered in a two hour teaching session; there is a need for videos on how to communicate with children.
The pursuit of children’s rights allows paediatricians to follow a practice of health care which is child centred, respectful, and promotes wellbeing. It makes the relation with our client group more satisfying and ensures that we are considerate of global and national societal needs. The work is best conducted in a team with other health professionals who have similar approaches in their respect for children’s rights.
I am grateful to Issy Cole-Hamilton, Gerison Lansdown, David Baum, Rachel Hodgkin, Margaret Lynch, and Elspeth Webb who have all provided important stimulation to my clinical practice in relation to children’s rights.
With comments from a young person’s perspective
This article has been read by a young person, Hannah Gibney, who has provided her comments (see box).
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