Children's participation in consultations and decision-making at health service level: A review of the literature

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Abstract

Background

The past decade has seen a growing recognition in Ireland and internationally that children and young people have a right to participate in matters that affect their lives.

Objectives

To critique the research literature on children's, parents and healthcare professionals’ experiences of children's participation in consultations and decision-making within the healthcare setting.

Method

The literature was obtained from electronic databases, books, and journals focusing on work published in between 1993 and 2007.

Results

Despite the importance of consulting with sick children, their views are rarely sought nor acknowledged within the healthcare setting. Children are rarely involved in decision-making process and appear to occupy a marginalized position in healthcare encounters. Healthcare professionals and parents play a significant influence on whether children's efforts to participate are facilitated and supported in the hospital setting.

Conclusions

There is a need for further research to explore health professionals’ and parents’ perspectives on children's participation in consultations and decision-making, as clearly they have reservations/concerns about children's active involvement in such matters. This information could be used to develop guidelines that will assist professionals and parents in facilitating and supporting children's participation.

Introduction

Since 1989, the United Nations Convention on the Rights of the Child (UNCRC) has become the most widely ratified human rights treaty in history as over 190 countries have ratified it. Ireland ratified the Convention on the Rights of the Child in 1992, without reservation. The Convention clearly stated the right of every child to self-determination, dignity, respect, non-interference, and the right to make informed decisions(United Nations Convention on the Rights of the Child, 1989). More recently in 2002, the United Nations held a Special Session of the UN General Assembly on Children, at which the nations of the world committed themselves to a series of goals to improve the situation of children and young people (UN General Assembly on Children, 2002). This resulted in the adoption of a document called ‘A World Fit for Children’ supported by the United Nations, UNICEF and other UN agencies, international organisations, civil society organisations and non-governmental organisations (NGO) (United Nations General Assembly, 2002). This document reaffirmed the United Nations commitment to several key principles and objectives enshrined in the Charter of the United Nations (United Nations General Assembly, 2002). In relation to children's right to participation, it stated specifically that:

“Children including adolescents, must be enabled to exercise their right to express their views freely, according to their evolving capacity, and build self-esteem, acquire knowledge and skills, such as those for conflict resolution, decision-making and communication, to meet the challenges of life. The right of children, including adolescents, to express themselves freely must be respected and promoted and their views taken into account in all matters affecting them, the views of the child being given due weights in accordance with the age and maturity of the child” (United Nations General Assembly, 2002, p. 7).

It is UNICEF's belief that children need to be encouraged and enabled to make their view known on issues that affect them and that the goals of ‘A World Fit for Children’ will only be accomplished with the full participation of children and young people (UNICEF, 2003). The importance of children's right to be heard in matters that affect their lives, has been established both at a national level in Ireland (Department of Health and Children, 2000, Department of Health and Children, 2000a) and at international level (American Academy of Pediatrics, 1995, Department of Health, 2003, Royal College of Paediatrics and Child Health, 2000, Spinetta et al., 2003, United Nations, 1989). Consultation with children is now a key policy issue that is recognised and actively promoted by many non-government and voluntary organisations such as Action for Sick Children, Barnardo's, Carnegie Young People Initiative, National Youth Agency, National Children's Bureau and Save the Children.

The emphasis on children's rights to participation led to the establishment in Ireland of a National Children's Office, Children's Ombudsman and a National Children's Strategy whose vision aims to create an Ireland where “children are respected as young citizens with a valued contribution to make and a voice of their own” (Department of Health and Children, 2000 p. 4). The National Children's Strategy emphasised the importance of all organisations developing children's consultation mechanisms so that children are involved in decisions, which affect their lives. Likewise in England, the appointment of a Children's Taskforce, Children's Ombudsman and the Children's National Service Framework (NSF) are significant initiatives designed to encourage children and young people's active participation. The Children's NSF (Department of Health, 2003) is a 10-year strategy that intends to radically improve the health and social care services for children and families by establishing national standards. The Children's NSF explicitly states that hospital services should be child-centred and that children ‘should be encouraged to be active partners in decisions about their health and care, and, where possible, be able to exercise choice’ (Department of Health and Children, 2000a p. 9).

Despite the importance of consulting with sick children, it appears that their views are rarely sought nor acknowledged within the healthcare setting (Alderson and Montgomery, 1996, Coyne, 2006, Dixon-Woods et al., 1999, Savage and Callery, 2007). The literature suggests that quite divergent opinions exist among health professionals on whether children should be allowed and encouraged to have a say in matters that affect them. We need to know why the principle of children's participation is problematic in practice, and to this end, this paper will critically consider children's experiences of participation in consultations; children and decision-making; and health professionals and parents’ experiences of children's participation in decision-making. These are important issues since children are our present and future health care consumers. For the purpose of simplicity, the term children are used to refer to children and young people in this paper.

Section snippets

Methods

The major health and social science electronic databases such as Medline, CINAHL, PubMed, Psyclit and were searched using key terms such as: ‘children’, ‘young people’, parents’, ‘healthcare professionals’, ‘consultations’, ‘decision-making’, ‘involvement’, and ‘participation’ in various combinations. Government and non-governmental databases were accessed such as; Action for Sick Children, Barnardo's, Carnegie Young People Initiative, National Youth Agency, National Children's Bureau and Save

Hospitalised children's experiences of participation

Although government and non-governmental agencies appear to support the principle of children's participation, the actual implementation of this principle in healthcare settings has been patchy. The National Youth Agency (NYA) and the British Youth Council (BYC) surveyed statutory and voluntary sector organisations in England (n = 849) in order to establish the extent to which children are involved in public decision-making (Oldfield and Fowler, 2004). They found that the level of participation

Discussion

The research evidence clearly illustrates that children are not always actively involved in consultations or decision-making within the healthcare setting. Generally children appear to occupy a marginal role in the information-exchange process. Children have identified several factors, which may constrain them from actively participating in consultations. These include: not knowing health professionals; not wanting to hear bad news; fear of causing ‘trouble’ by asking questions; lack of time

Conclusion

Both the National Children's Strategy (2000) for Ireland and the National Service Framework for the UK (2003) directs healthcare services to give children greater choice and participation in decisions about their health and care. Likewise many children and young people want to be heard, listened to and allowed to participate in healthcare matters (Cavet and Sloper, 2005). But the evidence suggests that there are many obstacles to the realisation of children's participation in the healthcare

Conflicts of interest

None.

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