Pre-school children frequently seen but seldom heard in nursing care.
A significant number of users of nursing services are pre-school
children, and have a right to be heard in matters affecting their
health. Despite nurses' duty to seek and take seriously the views
of children in matters concerning children's health, children are
rarely directly consulted as consumers of health care. Thus,
children's voices are largely unheard in nursing practice.
Furthermore, research about children's experience of illness
generally excludes preschool children. Therefore, preschool
children's voices are also mostly unheard in nursing research about
the experience of being ill. Consequently, there is little evidence from
nursing practice or research to show the potential benefits of ensuring
these voices are heard. This line of reasoning forms the basis of
recommending the need for research that seeks to understand how
preschool children experience being ill and how they communicate those
experiences to others.
Key Words: Preschool children, children's voices, paediatric nursing.
Children (Health aspects)
|Publication:||Name: Nursing Praxis in New Zealand Publisher: Nursing Praxis in New Zealand Audience: Academic Format: Magazine/Journal Subject: Health care industry Copyright: COPYRIGHT 2008 Nursing Praxis in New Zealand ISSN: 0112-7438|
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The importance of hearing children's voices in health care is evident in the following example from my experience as a registered nurse caring for a primary school aged child admitted for elective surgery. While completing a routine preoperative checklist with a child (approximately 8-years-old) and his mother, I asked the mother whether the child was allergic to anything. The mother said "no", but the child interrupted saying something like "what about at the party when I was blowing up the balloon?" The mother shrugged off the child's comment as not important. However, I asked the child to tell me more, and he mentioned having tingly lips after blowing up a balloon. I explained to the mother and the child the possible significance of the tingly lips as a sign of an allergy to latex. The anaesthetist was informed; precautions against exposure to latex were taken during the operation and the remainder of the child's stay in hospital. Subsequent testing confirmed the child had a latex allergy. This incident highlights the potential benefits of ensuring children's voices are heard and given due weight in their health care.
Preschool children (being those less than five years of age), rather than school aged children, are the group of children seen the most by nurses in primary, secondary, and tertiary health care settings (Ministry of Health, 2008). Despite this fact the potential benefits of ensuring preschool children's voices are heard and given due weight in their health care are largely unknown. In part this is because contemporary nursing practice in child health tends to rely on adults, usually a parent, to represent the views of children, particularly preschool children, and also because preschool children are largely excluded from the research on children's experience of illness. My argument is not about the rights of children versus the rights of their parents, or about who decides what is in the best interests of the child, or about the competence of children. In this article I detail my line of reasoning that all children including preschool children have a right to be heard and that, because preschool children's voices are largely unheard in nursing practice and nursing research, nurses do not know the potential benefits of this source of data.
Children's Right to be Heard
The Child Health Strategy (Ministry of Health, 1998) which forms the basis of the New Zealand Government's plans for improving child health through to 2010, is framed around a vision of "our children/tamariki: seen, heard [italics added] and getting what they need" (p. 17). This vision is consistent with Article 12 of the United Nations Convention on the Rights of the Child (United Nations High Commissioner for Human Rights, [UNHCHR] 1989). Under Article 12 of the Convention, States that have ratified the convention have agreed to:
Lansdown (1994) argues Article 12 is "fundamental both to the Convention and the recognition of children as people with a right to be heard" (p. 37). The Convention therefore guides health professionals to treat children as people with a right to be heard (Melton, 1998).
The abovementioned Convention is central to the international movement on children's rights. Those rights include the provision of health care, protection from harm, and the right to full participation in decisions that affect their lives. The Convention was adopted by the General Assembly in 1989 and ratified by New Zealand in 1993. Subsequently the children's rights movement is starting to have an impact on practices in the New Zealand justice, social welfare and education systems (See Atwool, 1998, 2000; Carr, 2000; Smith, Gollop, & Taylor, 2000; Taylor, Gollop, 8v Smith, 2000 for examples). However, in relation to children's health the Children's Commissioner (2006) suggests little has changed since McDowell's (1997) claim that there was, scant evidence of children's rights affecting practices in the New Zealand health care system.
Some legislative support for article 12 of the United Nations Convention on the rights of the child is provided through Section 74 of the Health and Disability Commissioner Act (1994) which includes a regulation allowing for the prescription of a Code of Health and Disability Services Consumers' Rights. The rights in the Code of Health and Disability Services Consumer Rights (1996) apply to all consumers of health and disability services in New Zealand, regardless of whether they are children or adults. The Code therefore provides regulatory protection for the rights of children as consumers of health and disability services. Those relevant to this discussion include:
* The right to be treated with respect (right 1), which includes the right to be provided with services that take into account the needs, values and beliefs of different cultural, religious, social and ethnic groups, including the needs, values, and beliefs of Maori (right 1 (clause 3)).
* The right to have services provided in a manner that respects the dignity and independence of the individual (right 3).
* The right to effective communication (right 5), which includes the right to an environment that enables both consumers and provider to communicate openly, honestly, and effectively (right 5 (clause 2)).
* The right to make an informed choice and give informed consent (right 7) which includes a presumption of competence, unless there are reasonable grounds for believing that the consumer is not competent (right 7 (clause 2)). Furthermore, individuals with diminished competence are extended the right to consent, to the extent appropriate to his or her level of competence (right 7 (clause 3)).
One message for providers of child health services within these regulatory rights is that they have a duty to seek and take seriously the views of children in matters concerning children's health. Unfortunately despite these regulatory rights, the United Nations Convention, and the vision for child health, it is still the case that children are rarely consulted as health care consumers (Coyne, 2006; Dickinson, 2004; Hart & Chesson, 1998).
Children's Voices in Nursing Care
Not only are children rarely consulted as consumers, but historical, and to a large extent contemporary nursing practice in child health has relied on adults, usually a parent, to give an account of their child's illness experience. At first it seems eminently reasonable for nurses working with children to rely on parents'/ caregivers' accounts of their child's illness. After all parents/ caregivers have privileged access to their children's life experiences and they tend to know and understand their children well (van Manen 8v Levering, 1996). However, the assumption that these accounts of the child's illness experience coincide with the child's experience or the child's account is questionable.
Child health nurses' reliance on adult accounts of children's illness experiences may reflect their commitment to family-centred care. The concept of family-centred care is widely regarded as fundamental to the provision of nursing care to children, at home, in the community and in hospital (Darbyshire, 1995; Nethercott, 1993; Power 8v Franck, 2008). The orientation of child nursing towards the family can create a paradox between the rights and needs of the child and the rights and needs of the family. While there is no question that nursing children requires a strong orientation towards caring for the child and the family/ wh[??]nau, it is regrettable that very little of the literature on family-centred care acknowledges that the best interests of the child shall be the primary consideration and may not always be addressed by focusing on the family rather than the individual child.
The dominant perspective that regards children as developmentally immature and unable to understand and describe their world and life experiences may also contribute to nurses' reliance on adults' accounts of children's illness experiences rather than the accounts of children themselves. While children's biological immaturity is a fact, the way in which that immaturity is understood and enacted is socially and culturally constructed (Prout & James, 1997). The view that preschool children are unable to understand and describe their world and experiences is not supported by research. Research demonstrates that under some conditions children under 5-years-old and as young as 2-years-old can recall quite accurately, information about personally experienced events (Docherty & Sandelowski, 1999; Fivush, Gray, & Fromhoff, 1987; Fivush & Hamond, 1989; Follmer Greenhoot, Ornstein, Gordon, & Baker-Ward, 1999; Liwag & Stein, 1995; Merritt, Ornstein, & Spicker, 1994; Ornstein, Gordon, & Larus, 1992).
In a nursing context the meaning of the illness experience from the child's perspective may be as important as the accuracy of their parent's account of the specific events that were part of that experience. Van Manen (1999) stresses the pathic nature of nursing practice, which focuses directly on the ill person rather than the diagnostic or prognostic aspects of the experience. Similarly, Gadow (1995) argues for the centrality of the patient's meaning of the illness experience in nursing assessment. The meaning of the illness experience from the child's perspective is also relevant within the medical context. Wulff (1995) distinguishes four components used by physicians in making clinical decisions: the biological, the empirical, the empathic/ hermeneutic, and the ethical component. The empathic/ hermeneutic component acknowledges that the state of illness cannot be identified without attention to "the patient's personal experience of the symptoms in the context of his or her own life" (Wulff, p. 305).
Reports by patients of their experiences of illness are a practical and integral part of the data interpreted by health professionals in the process of making clinical decisions (Good & Good, 1981). Adult accounts of children's illness experiences in child health care are undoubtedly significant to clinical decision-making. However, Ireland and Holloway (1996) have argued that to focus on adult accounts of children's illness to the exclusion of the child's perspective about their illness might prevent health professionals from obtaining important and relevant information. This is not an argument to exclude adult accounts of children's illnesses. Rather it is an acknowledgement that adult accounts of a child's illness provide only part of the picture. The missing piece of the puzzle is the child's perspective which should be obtained and given due weight in clinical decision-making.
Children's Voices in Research
There is now some research that addresses from the child's perspective how children experience various illnesses and aspects of being ill. However, researchers have tended to focus on school aged children with chronic illnesses such as, asthma (Yoos & McMullen, 1996), attention deficit hyperactivity disorder (Kendall, Hatton, Beckett, & Leo, 2003), cancer (Hockenberry-Eaton & Minick, 1994), diabetes (Miller, 1999), and liver transplant recipients (Wise, 2002), to name a few. Some researchers have included school aged children with a range of chronic illnesses (e.g. Sartain, Clarke, & Heyman, 2000; Woodgate, 1998). Researchers have also begun to address, from the child's perspective, how school aged children experience factors associated with being ill, such as hospitalisation (Boyd & Hunsberger, 1998; Carney et al., 2003; Forsner, Jansson, & Sorlie, 2005) and acute pain (Alex & Ritchie, 1992; Polkki, Pietila, & Vehvilainen-Julkunen, 2003; Woodgate & Kristjanson, 1996). Nevertheless research on the school aged child's perspective on various, mainly chronic illnesses, cannot be generalised to the experience of preschool children who predominantly are seen by nurses for well child health checks or because of short term passing illnesses.
Even though preschool children are significant users of health services, research literature has given scant attention to understanding the experience of illness, from the children's own point of view. Of the studies listed above only two--Woodgate and Kristjanson's (1996) study of young children's perception of postoperative pain and Carnevale's (1997) study of what it is like for a child to be critically ill--included preschool children. The scant attention in the research literature to understanding the preschool child's subjective experience of illness can be attributed in part to the methodological difficulties of conducting research with this young age group. The limits of preschool children's language abilities inevitably constrain research reliant on verbal fluency. When it comes to research with preschool children there is a need to develop new methodologies that move away from the traditional heavy reliance upon verbal data.
Despite international conventions and national statutes confirming the rights of children to have their voices heard in relation to health care, nurses and other health professionals face practical challenges in understanding and communicating with preschool children who because of short-term passing illnesses are frequent users of health services. Understanding the child's experience is an important component of nursing children but one that is progressively more difficult the younger the child. Therefore, particularly with preschool children, an understanding of the child's experience is often neglected in the provision of health services. There is little research based evidence about how preschool children express their views in matters affecting their health and its management. Similarly it is unclear whether their views are recognised and given due weight by adults making decisions related to the child's illness experience. It is likely there are clinical benefits to be gained from understanding how preschool children experience being ill, and to knowing how they communicate this experience to others. There is a need for research that specifically addresses this gap.
I wish to acknowledge Dr Irena Madjar from the University of Auckland and Professor Dianna Keatinge from the University of Newcastle Australia who reviewed an earlier draft of this manuscript.
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