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With comments from a young person’s perspective
Rights, what are they and who has them? Alderson1 describes rights as “equal entitlements for all members of the human family to respect their worth and dignity…” as a reflection of the preamble stated in the United Nations Convention on the Rights of the Child 1989.2 The Convention reflects the philosophy that children too are equals, having the same inherent value as grown-ups. The value of childhood itself is emphasised by the child’s right to play within Article 31 of the Convention.3 The Articles of the convention have been divided into three sections:
Provision: setting the rights to the provision of necessary goods services and resources that will help them reach their potential. This includes the right to food, health care, education, etc.
Protection: the right to be protected from neglect, abuse, exploitation, and discrimination.
Participation: the right to be respected; being active participants in the family, in the communities in which they live, as well as in organisations that provide services for them.
This includes being informed and having access to information, to the opportunity to express their views, and to have those views and wishes taken seriously in all matters that affect them (Articles 12, 13, and 17). In a health care setting these rights are especially challenging in relation to consent to treatment.
Working from a rights base perspective is important to my personal and professional accountability in my role as a nurse and manager within the NHS. All rights are applicable in health care but it is the application of the participation rights that are perhaps the most challenging because they challenge our power and authority. A rights based approach requires that we examine and understand our power and influence in the roles we have with children. As a health professional I hold power and authority by the nature of my specific nursing/medical knowledge and skills. I have access to resources and I can define what happens where, when, how, and by whom to a lesser or greater degree as can other professionals. The more authority one has in the team or the organisation, the greater the power and influence. If that power is used in a unilateral and paternalistic manner, then the patient (the child) and parent can become passive recipients of care organised and delivered by professionals. The UN Convention challenges our view of childhood and our power base. It can be seen as a “benchmark for a change of priorities in our relationships, professional and otherwise, with children”.4 The focus of nursing “is the whole person and the human response…”. Nursing interventions “are concerned with empowering people and helping them achieve, maintain, or recover their independence”.5 Nurses often have the greatest time in direct contact with the patient compared to other staff involved in their care. They are therefore able to identify the needs, wishes, and concerns more readily, and are in a unique position to influence the child’s empowerment through participation and indeed have a responsibility, with others, to do so.
Young person’s commentary
I have highlighted certain areas of the article: bold is what I disagree with and italics what I agree with.
I feel that in certain aspects of this piece of work the author is looking at the rights of the children from the wrong perspective—who has the most power in the relationship. It is not really about who has the power or intelligence, it’s about the mutual respect within the relationship and how this empowers and allows participation to flow naturally. I also feel she holds a slightly tokenisitic view when she says nurses are in a good position to influence and therefore gain consent. This is almost as if the decisions have already been made for the young person, and so although there is consultation, what they say does not really affect their own treatment and their own body.
However, there are many positive areas of this piece. I agree with the author in saying that although parents are an important and crucial part of the child’s life, in the child’s decision-making they should not necessarily have the final say. And that this particularly leads to patient centred care.
I feel that there isn’t really a lot missing from this article, except possibly a short paragraph from a young person that has been treated in the ways explained. This would illustrate either its effectiveness or what could be changed about the methods used.
In the main it has been the participation rights of children that have been the focus of my work, but no right can be seen in separation from another.6 While working in the role of Clinical Nurse Specialist within the Liver Unit (1988–2002), I established, with the multidisciplinary team, a framework of practice to help children with their parents to make choices in their care and treatment. Children’s participation rights in relation to consent or refusal of treatment were the key drivers in this work. Involving children in decision making on their treatment is one of the greatest challenges in paediatric practice, and in a rapidly developing, highly technological service, it was important to ensure there was a process from which the whole team worked to empower children and young people to share in decisions with their parents, enabling them to gain greater competence and confidence over time in decision making.7 Principles of practice were defined and objectives agreed.8 The process starts at the point of referral and applies to all children who attend the Liver Unit. The initial stage of the process involves identifying what children and young people already know about their health problem and treatment, as well as finding out about their experience of living with the disease/condition. An opportunity is provided for the child to share as much as they want to about themselves through various activity sheets. Information can then be shared by the team within the context of the child’s life experience and concerns.
Whenever possible, information is shared with the child at their own pace. In order to achieve this, time for information sharing and listening to the child needs to be built into the care and treatment plans and care pathways. Opportunities to share and discuss information with their parents are provided, as well as the chance to make real choices. It is important to be clear about the limits of choice and why that is so.
Supporting parents in this process is crucial. Many parents wish to protect their child from difficult information. This is only natural; however, it is our role to help them understand that informing children and giving them a chance to participate, when undertaken sensitively by skilled people and in an age appropriate manner, is preferable to unexpected unpleasant experiences in which the child has no control.9–11 This is respectful to the child. Many parents require support and guidance to prepare them to answer difficult and emotional questions from the child and their sibling(s) in a sensitive and truthful way.8 Supporting parents in their parenting role upholds Articles 5 and 18 of the Convention.
Runeson and colleagues12 identify in their research on children’s participation, the role of parents in upholding the views, concerns, and needs of their children, and indicates that parents may not always uphold these in a health care setting. Earlier research by Arronson13 identified that parents often take the side of physicians. Leikin14 states that parents may have “interests separate to those of the child, including fulfilling their own needs and desires and those of the staff”. This emphasises the importance of listening and responding to children, and not only acting on what the parent says. Our advocacy role on behalf of the child may be imperative.
The Department of Health Consent Policy15 reflects the partnership of choosing. In Consent Form 1, a place is provided for parents to sign when a ‘competent’ child is signing. Consent Form 2 similarly has a place for the child to sign in agreement alongside the parent’s signature. Nurses are in an excellent position to influence this, and indeed to become trained communicators in gaining consent to treatment.
While working with children, they themselves asked how they could make sure that the choices about the way they wanted to be looked after could happen in the planned episode of care in the intensive care unit (where they had no physical voice!). Together we came up with the idea of having a brightly coloured piece of paper headed “Things you need to know about me” or “How to look after me”. An example of the content of such a sheet is given below; an 8½ year old girl writes:
“I would like to have clip-on bag please, on my ileostomy. They are easier to change. I would like to take ‘Big Rabbit and Teddy’ to ITU with me. Please always tell me what you would like or need to do to me before you do it and how it will feel. Please talk to me even when I’m having my ‘special rest’ in ITU. I might be able to hear you but be too sleepy for you to know that.”
Sharing information, listening, and responding to children and young people requires time and skill and commitment. This can only happen if a process for this to be achieved is defined within teams and the skills of the different professionals are used (for example, play specialists with medical or nursing staff). How, where, and when children can access information and address their concerns should be defined, as well as identifying who will coordinate this process and ensure it happens. Within the Liver Unit team, this has mainly been the Liaison Nurse or Nurse Specialist. A whole team approach and commitment is required for this approach to be successful.
This approach has proved successful for children, young people, and their parents, as well as staff. Parents have said they have learnt with and from their children and gained greater confidence in their child making informed choices in their life. Staff are surprised by the knowledge and understanding that children can develop and are moved by the choices they make when given the opportunity. This in itself is an empowering and humbling process. Trust, respect, and commitment by the whole team to sensitive effective and honest communication between all parties, is the key to success.
While sharing this work with others I became motivated to explore the position of children’s involvement in their care and treatment in an acute paediatric surgical setting. This is an Action Research project being undertaken as part of an MPhil degree.
In my current role as Head of Child and Family Centred Care I have the opportunity to influence the implementation of the right’s of the child on a wider scale. One key area of responsibility is to develop policy and make reality within the Trust, patient and public involvement; that is:
The involvement of patients in care and treatment decisions
Their involvement in the review, planning, development, and delivery of services.
In paediatrics or child health services it can be all too easy to substitute the word patient for parent. Parents are of course vital to a child’s life, but they are not the patients with their “unique” experience. Their child’s experience and views need to be heard and respected alongside that of the parent if we are to deliver “patient centred” care and services.16,17
Through and with the people and services I am privileged to manage, the implementation of the rights of children will become more of a reality. These services include Cultural Patient Advice and Liaison service (CPALS), Child and Family Information Centre, Interpreting Service, Bereavement Service, and the post of Arts Manager.
This year’s objectives include:
Through creative and participative methods, help children gain knowledge and understanding of the United Nations Convention on the Rights of the Child and its application in their care and treatment
To develop and implement with colleagues, children, young people, and their families, multi-professional training and education on:
knowledge and application of children’s rights
communication with children and parents
empowering children and young people, including the development of resources on creative methods of gaining children’s and family’s views.
Other opportunities include the chance to influence the trust’s catering contract in the purchase of “Fair Trade”18 food products in support of Article 27 in the UNCRC: “the right of all children to a standard of living adequate for the child’s physical, mental, spiritual social development”.6
We live in exciting times. Children have never been so much at the centre of government policy and legal provision. The Children Bill19 “creates a legislative spine for developing more effective and accessible services focused on the needs of children, young people and their families”.
As a part of this process an independent champion for children will be created in the form of a Children’s Commissioner. Their role will be to represent the views and interests of children, ensuring “they are at the heart of policy making and national debate”. The Bill also states that the UNCRC will “provide an important context for the Commissioner’s work”. A Director of Children’s Service and Lead Coordinator Council Member for children will also be created. September 2004 saw the publication of all 11 standards of the National Service Framework for Children, Young People, and Maternity Services, providing clear direction on the provision of care of children and young people. As health professionals it is our responsibility to take on the challenge of putting this into practice.
Involving children and young—where to find out more. Department for Education and Skills, 2003.
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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