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Journal of Clinical Nursing 2002; 11: 421429

Review Adaptation and negotiation as an approach to care in paediatric diabetes specialist nursing practice: a critical review
MARIE MARSHALL B S c , RS CN , R G N
Paediatric Diabetes Nurse Specialist, St Marys Hospital, Manchester, UK

ELIZABETH FLEMING B S c , R N
Research Assistant, Clinical Nursing Practice Research Unit, Department of Primary & Community Nursing, Faculty of Health, University of Central Lancashire, Preston, UK

WARREN GILLIBRAND M S c , R N Lecturer, Clinical Nursing Practice Research Unit, Department of Primary & Community Nursing, Faculty of Health, University of Central Lancashire, Preston, UK BERNIE CARTER P hD , R S C N
Professor of Childrens Nursing, Department of Primary & Community Nursing, Faculty of Health, University of Central Lancashire, Preston, UK Accepted for publication 21 November 2001

Summary

Considerable attention has been given to diabetes care in children. However, nursing practice may be guided by biomedical models. Diabetes care in children should focus on family-centred approaches arguably based in the community. Psychosocial constructs have an important role in the development of selfmanagement of chronic illness in children. Paediatric diabetes nurse specialists are pivotal in facilitating family-centred care based on personal models of child and family interventions. Keywords: children, community nursing, diabetes, family-centred care, psychosocial constructs.

Introduction
Correspondence to: Warren Gillibrand, Clinical Nursing Practice Research Unit, Department of Primary & Community Nursing, Faculty of Health, University of Central Lancashire, Preston PR1 2HE, UK (tel.: +44 1772 893775; e-mail: wpgillibrand@uclan. ac.uk).
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Current United Kingdom (UK) Department of Health (DoH) and National Health Service (NHS) directives demand an evidence base for health care practice (DoH, 1998, 1999) and clinical governance directives place 421

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M. Marshall et al. (Coyne, 1996). In the evolution of parental participation, the terminology changed from parental involvement to partnership in care and nally to family-centred care. It is because of this confusion over the denition that the terms are used interchangeably and indiscriminately (Coyne, 1994). Coynes (1996) analysis conrms a lack of consistency in the description of parental participation, because of the changing terminology, but states that regardless of the confusion the underlying theme is apparent. The main aim of the partnership model is that the family will be involved and consulted about the care of their child, as it recognizes and respects the family as the experts in the care of their child (Casey, 1988; Casey & Mobbs, 1988; Sidney, 1990). Therefore, care is planned in negotiation with the families who, in principle, are considered to have an equal relationship with the health professionals providing the care (Taylor, 2000). Caseys (1995) study, which involved 243 inpatients and their families over a 3-year period, found that the majority of parents, 85% (or other family carers), were involved in some aspect of their childs care. It suggested that parents understood what was expected from them and therefore felt more comfortable being involved. Alternatively, Taylor (2000) suggests that they may have established a relationship with the nurses over a longer length of time and so both understood each others role. This study also stated that parent participation only occurred when families were in hospital for several days. According to Taylor (2000), a nurse should be able to negotiate care in a short time, but she further recognized that the acute nature of a childs illness may lead to a lack of understanding on both sides regarding the partnership role. Evans (1994) also undertook a study that explored issues in parental participation on the paediatric oncology ward where she worked. Five mothers were asked to participate in the study and were taught how to administer intravenous antibiotics to their children. This study appeared to provide realistic data on parent participation, with positive feedback from the mothers participating in this type of care. However, to undertake what was asked of them, they all felt that they required strong supervision, education and support throughout. Bishop (1988) argues from her study that the nurses role of support and teaching requires adequate time if it is to be effective. Taylor (2000) suggests that hospital nurses attitudes and assumptions about the family can hinder its participating fully in the childs care. This has been supported by Callery & Smith (1991), Dearmun (1992) and Darbyshire (1992, 1993), who observed nurses who did not fully
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emphasis on the use of research and evidence in todays health care systems (DoH, 1998). As a profession, nursing has a duty to provide safe, effective patient care (United Kingdom Central Council, 1992). The development of advanced nursing roles can help promote excellence in patient care by enabling nurses to develop and research advanced knowledge and skills in a specic area of practice (Dyson, 1997; Armstrong, 1999). This paper is a critical review of novel approaches to child diabetes care based on psychosocial theories and the role of the paediatric diabetes specialist nurse. In terms of community-based practice there has been little or no empirical work examining the role of the paediatric diabetes specialist nurse. Precepts of care rest uneasily between following Caseys (1988) model of family-centred care and a predominantly consultant-led biomedical model (Atkinson & Maclaren, 1994). The search strategy used the terms: paediatric nursing; diabetes; children; adolescents; community nursing; psychology; psychosocial and family-centred care. Boolean combinations were used and databases searched were Medline, CINAHL, PsychInfo, Nursing Collections, Cochrane and EBM Reviews. Secondary references and the grey literature were followed up, together with a Royal College of Nursing library bibliographic search. All years dating from the present back to 1966 were searched.

Family-centred care
Since the publication of the Platt Report on the welfare of children in hospital (Ministry of Health, 1959), there have been attempts to humanize childrens hospitals by offering open visiting (Fagin & Nusbaum, 1978) and living-in facilities for parents, and encouraging parents to take a more active role in their childs care whilst in hospital (Sainsbury et al., 1986). Fradd (1987) continued the introduction of the concept of family participation and recommended that parent participation should be viewed as a philosophy that will enable parents to engage in their childs care and retain total responsibility for their child. This concept of family-centred care is regarded as fundamental to the provision of care for children nursed in hospital or the community (Tackett & Hunsberger, 1981; Hutcheld, 1999). This is further supported in documents published by the UK DoH (Department of Health, 1991) and the Audit Commission (1993). Familycentred care, parental participation and family adaptation could be facilitated better in the community setting than in hospital (Gould, 1996). According to a review of the literature, parental participation is a complex and multidimensional concept

Role of paediatric diabetes specialist nurse attend to the care of parents because they had reservations about the parents ability to provide the necessary care. Therefore, it is important that childrens nurses in hospital establish a partnership with the family, who must be kept fully informed of their childs condition and are assisted in participation in their childs care, as this is the foundation for establishing trust (Fradd, 1996). Parents who are informed and aware of what is happening to their child are more likely to be able to help their child cope with both the illness and hospitalization (Glen, 1982). A study undertaken by While (1992) reported that, whilst parents at home felt more supported and informed about their childs progress, this was probably the result of the ongoing relationship between the community childrens nurses and the family. Secondly, a study by Moyer (1989) supported the notion that parents need ongoing education and support, preferably by a diabetes specialist nurse. However, this raises concern that the diabetes specialist nurse may foster dependence (Bridgman et al., 1978). In contrast, reluctance of community nurses to provide the families with ongoing education and support was identied in a study by Wade & Moyer (1989).

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Community childrens nursing


The introduction of paediatric diabetes nurse specialist posts arose out of a need to provide families with the necessary education and support they require to care for their children (McEvilly, 1991; Da Costa, 2000). The role of the paediatric diabetes specialist nurse (PDSN) today is difcult to dene both because of the multifaceted nature of the work and the individuality of the professionals. To undertake this role, according to Lowes (1997), the specialist nurse needs to understand the problems of diabetes management from the perspective of both the child and parents. Becker (1994) suggests that in order for the nurse to understand the problems the child and parents are having, the individual familys values and beliefs about health and illness must be considered. Only then can education and support be developed to encompass a family-centred care approach that includes everyone who undertakes some responsibility for the childs management (Hatton et al., 1995; Lowes, 1997). Jones (1995) argues that the special needs of children, parents and families have been the main focus for the development of paediatric nurse specialists. It has been suggested that the majority of nurse specialist roles have developed in areas that have a clear association with medical specialities or that are associated with specic and skilled techniques, for example, asthma nurse specialists and intravenous nurse
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specialists (Pickersgill, 1995; McGee et al., 1996; Dyson, 1997). In adapting to meet the ongoing care needs of their child, parents use the support of community childrens nurses (Whiting, 1990). It has been argued that parents are highly motivated caregivers and are capable of caring for their child at home if long-term treatment is required (Stampford, 1990). In support of this view it has been suggested that, no matter how much parents are encouraged to be involved in their childs care, they do not feel in control in hospital (Fradd, 1990). In the hospital setting the balance of power in the nurse/family relationship is tipped in favour of the nurse and it has been argued that the nurse has control of the hospital ward, including what and how information is given to parents (Callery & Smith, 1991). It has been further argued that the balance of power is reversed in the community, as the health care professional is now a visitor to the family home, rather than the family being a visitor to the ward (Gould, 1996). It has previously been shown that specialist nurses are taking on increasing responsibility for diabetes education and support in the home (Rayner, 1984; Baum & Kinmonth, 1985). According to Hentinen & Kyngas (1998), social support has been identied as a powerful mediator of personal well-being. Furthermore, there is evidence that providing families with emotional support and further information has been associated with good adaptation (Dunst et al., 1986; Moyer, 1989). This appears to conrm the ndings from the Hentinen & Kyngas (1998) study that parents with poor adaptation felt they had received poor emotional support from both their relatives and health care staff. It has been suggested that for education to become meaningful for the child and the family, the most successful family teacher programmes appear to be those given over a long period of time and involving frequent contact and reinforcement (Brown, 1988; Moyer, 1989). The diabetes nurse is in the ideal position to offer parents support, enabling them to voice their fears and anxieties in a comfortable non-threatening environment (Moyer, 1989; Anderson, 1990; While, 1992; Richmond, 1998). It has been suggested that specialization equates with medical dominance and the loss of nursing focus, yet it could be that understanding the disease process and its related treatment is crucial to effective nursing care (Thompson & Webster, 1986; Dyson, 1997). Power (1985) argues that accurate and complete information about the disease process and its treatment helps to alleviate feelings of helplessness in families coping with a chronically ill child. Parents who have a good understanding of their childs condition develop a sense of control over their

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M. Marshall et al. although the causes of this are not clear. People with IDDM rst diagnosed in early childhood face a lifetime of testing and insulin therapy and the increased risks associated with long duration. In 1997, an estimated 124 million people worldwide had diabetes and by the year 2010 the total number of people with diabetes is projected to reach 221 million (Amos et al., 1997). Diabetes in childhood is recognized by health care professionals as a lifelong illness requiring a complicated daily management regime (Betschart, 1988). This is in order to maintain good diabetic control, achieve normal growth and development, prevent complications, and promote and sustain optimal functioning for the child. Denitions of this type, according to Anderson (1981), appear to t in the context of Western medicine, where perhaps the major concern of doctors and nurses is with the disease process and the therapeutic regimes that can produce cure or at least arrest the course of the disease. The diagnosis of a chronic illness can have a devastating effect on the child and family and constitutes a major crisis. According to Eiser (1990) it can change all aspects of family life and requires parents to adapt (Hentinen & Kyngas, 1998). Jerrett (1994) and Coyne (1997) suggest that successful management of a childs chronic illness hinges on the parents being able to provide the prescribed care. This care is often taken for granted by health care professionals (Jerrett, 1994). The assumption that parents will do what is expected of them, and carry out the prescribed treatment regime, is based on the fact that, out of concern for their child, they (in particular mothers) will willingly accept the treatment regime, seeking satisfaction in their ability to provide excellent care for their child (Procter et al., 1998). For some parents coping with adversity brings out family strengths and thus together they undertake what is required of them (Hobbs et al., 1985). However, it may also be that caring for a sick child puts additional strain on the family. In the UK, children newly diagnosed with diabetes have initially been hospitalized, but over the past two decades there has been a gradual shift towards home management from the time of diagnosis (McEvilly, 1991; Swift et al., 1993; Lowes & Davis, 1997). Symptoms at presentation are variable and children over 5 years of age are now frequently diagnosed in the less acute, early stages of the disease. The development of the diabetes team and in particular the specialist nurse, who works in the hospital and the community, is able to provide the daily support and education required for successful home management (McEvilly, 1991; Swift et al., 1993). This movement towards home management is further supported by the Department of Health (1991), which suggests that
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situation (Canam, 1986; Evans, 1987). It has been argued that PDSN roles must be rmly family centred, based on expert practice and grounded in a nursing philosophy (Dyson, 1997; Scholeeld & Viney, 1997). Clarke (1982) argues that the role of nurse advocate involves informing patients of their rights, making sure they have the information to make informed decisions and supporting them when they have reached those decisions. For diabetes specialist nurses, involving parents and children in decisions concerning care has become particularly signicant because of the movement towards home management for children diagnosed with diabetes. Swift et al.s (1993) study appears to suggest that children who develop diabetes can be safely and effectively managed out of hospital if a specialist team committed to community management is available. It followed the British Paediatric Associations Working Party Report (1990) on childrens diabetes services, in which it was stated that 87% of paediatricians reported that virtually all children with diabetes were admitted at the time of diagnosis, despite there being no published work showing that hospital admission for children who do not require treatment is necessary or benecial. Swift et al.s (1993) study also showed that children managed out of hospital had fewer readmissions. Galatzer et al. (1982) argued that by initiating the process of management of diabetes out of hospital and by allowing parents to adjust by practical activity to the crisis of diagnosis, the subsequent problems are managed more effectively by parents making telephone contact with specialist nurses or consultants and thus avoiding admissions.

Diabetes in children: a chronic illness


Diabetes can be found in almost every population in the world and epidemiological evidence suggests that, without effective prevention and control programmes, it will continue to increase globally [World Health Organization (WHO), 1994; Amos et al., 1997]. The large majority of children and young people with diabetes have type 1 (insulin-dependent diabetes mellitus, IDDM). According to Molbak et al. (1994), this makes IDDM one of the most common childhood diseases in developing nations. Type 1 diabetes results from cellular mediated autoimmune destruction of pancreatic islet beta cells, resulting in the loss of insulin production (Atkinson & Maclaren, 1994). The incidence of children under 15 with type 1 diabetes is around 1520 per 100 000 per year and there are at least 20 000 children and young people with diabetes in Britain (Rangasami et al., 1997). The incidence is increasing,

Role of paediatric diabetes specialist nurse children should only be admitted to hospital if the appropriate care cannot be provided daily in the community. There is now recognition that children are particularly vulnerable to the emotional impact of illness and hospitalization (Visintainer & Wolfer, 1975; Royal College of Nursing, 1994). Moyer (1987) suggests that knowledge is a potential coping mechanism for parents caring for a child with a chronic condition. According to Gibson (1999), if the necessary education is not provided, parents will actively search for it and try to make sense of their situation. However, Brown (1988) and Glasgow et al. (1999) consider that education alone is not sufcient for successful management of a child with diabetes. This must be viewed as a more complex process, which should also include emotional peer support, supervision and behavioural reinforcement directed both towards the child and those closest to him/her. According to Cox & Gonder-Fredrick (1992), the impact of and adjustment to diabetes begins with diagnosis. Receiving and attempting to understand the diagnosis is difcult for most parents (Jerrett, 1994; Hatton et al., 1995). Coyne (1997) suggests that the sequence of emotions parents go through during this time follows that of any bereavement, as they mourn the loss of their healthy child. A study by Hentinen & Kyngas (1998) describes the adaptation of parents who had a child with a chronic illness, comparing diabetes, asthma and arthritis and reveals that overall there were greater difculties in adaptation in parents whose child suffered from diabetes than in those whose child had rheumatoid arthritis or asthma. The results appear to conrm that, in families where there was good adaptation, there was an acceptance of their childs condition, good relationships in the family, and freedom to express feelings. In families who appeared to have poor adaptation there was more conict, parents felt guilty having a child with a chronic condition and there was little time to express feelings. Useful data emerged indicating that community nurses can be used to interact more effectively with families of children with chronic illness facilitating adaptation (Hentinen & Kyngas, 1998). A small qualitative research study undertaken by Hatton et al. (1995) with eight, two-parent families looked into the parents experiences of children diagnosed with diabetes and found common emotional responses including shock, anger, fear, sadness, guilt and grief. Parents suggested that empathetic, non-judgemental listening would have been of tremendous value in supporting them in adapting to their situation. Jerretts (1994) study of 10 two-parent families of children with juvenile arthritis
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found that parents reported similar feelings of anger, sadness, guilt, helplessness and shock on diagnosis, but further revealed the need for nurses to demonstrate awareness of the experience the parents were living as they struggled to learn the childs illness management. The clientnurse negotiation model would assist in promoting this shared understanding, and enable parents to feel they are partners involved in shaping their own role as caregivers. According to Jerrett (1994), attending to parents feelings offers an opportunity to develop new options for coping and new understandings. Whilst support for the child with diabetes and their family is essential, education for professionals must also be addressed. Educating patients and members of the health care team is one subrole highlighted for the paediatric diabetes nurse specialist that was identied in the literature as early as 1967 (Etzwiler, 1967). This was a historical study, which looked at evaluating the knowledge of diabetes among a group of health professionals (nurses, dieticians and physicians) who were involved in teaching patients, and appeared to identify a need for a specialist nurse to undertake this teaching role. Etzwilers (1967) study was based on his opinion that only well-informed patients who co-operated with interested and knowledgeable medical personnel could achieve proper control of diabetes. Fisher et al. (1982) describe diabetes as being one of the most psychologically and behaviourally demanding of the chronic medical illnesses. They suggest that psychosocial factors are relevant to nearly every aspect of diabetes and its treatment for the children and families. This account would appear to confront the personal and social meaning of diabetes that families have to live with in their everyday lives. Nevertheless, Gochman (1997) feels that, despite the complexity of this condition, current practice policies regarding diabetes management remain predominantly biologically focused.

Personal models
McMahon & Pearson (1991) argue that therapeutic relationships with children and families are about understanding the childs reasons for not adhering to selfmanagement plans. They suggest that PDSN care cannot be considered holistic unless acknowledgement and understanding is sought of the psychosocial constructs that individuals operate under. In applying psychosocial constructs, it may be possible to map the childs and familys needs into a personal-model-based care plan. Therefore, analysis is required of models that are appropriate, in this case adaptation and negotiation models (Hentinen & Kyngas, 1998). This needs to be coupled

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M. Marshall et al. the psychological, cultural and social meanings of particular situations from the familys perspective that they can begin to help them acquire health behaviours compatible with their system of beliefs and values (Anderson, 1990). A limitation of this model is that the nurse using it needs to be an expert nurse. The more able the nurse is, the more they will acknowledge and incorporate the familys own perspectives into the provision of care (Benner, 1984). Families, regardless of background, may have different concepts of health and illness from the nurse. Therefore, nursing care must be negotiated in partnership with them. It is only by attending to the total context in which health and illness are experienced that nurses can provide effective health care (Anderson, 1990). King (1984) argues that one of the most powerful inuences on health-related behaviour is a particular combination of beliefs, known as the health belief model. Attempts to change individuals behaviour must rst involve an understanding of the beliefs on which the existing behaviour is based. Health beliefs are seen as an essential tool in health promotion, as families will rarely follow advice that conicts with their existing beliefs. Any advice has to be negotiated with the family, as there is clearly no single educational prescription suitable for all families, but the beliefs, concerns and expectations of each individual family will provide the basis for discussion (King, 1984). According to Becker (1994), individuals are more likely to comply with treatment when they believe that the doctor is correct, the illness can cause harm and the prescribed treatment will reduce the risk of complication or death, or that their health will improve (Cameron, 1996). The health belief model can help childrens nurses to focus on the individual childs understanding and beliefs about their own health and illness. Identifying these beliefs, inuencing them and implementing change that is positive for the child and the family can only be brought about through a process of negotiation (Buckingham, 1997). However, it could be argued that the health belief construct may only be a tangential model to be used in understanding the world of the child with diabetes. Its emphasis on rational aspects of decision-making, ignoring emotional factors such as fear, may only provide a small addition to developing a personal model of care. For families caring for a child with diabetes, fear could be considered to be a motivating factor towards self-management. Secondly, the model also implies that beliefs are static and do not change over time (Walker, 1999) and nally, as Sheeran & Orbell (1996) suggest, the model does not address behaviour itself and does not address the
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with recognition of the variables that can affect the childs and familys concepts of health and health beliefs. An area which also has received little attention but is vitally important in the UKs multicultural society is an understanding of cultural issues and differences, which will in turn change families and childrens psychosocial constructs. In negotiation with the family, the nurse can provide education and support in accordance with their values and beliefs (Anderson, 1990). In acknowledging that parents have the major responsibility for day-to-day management of their childs condition, Banion et al. (1983) suggest that parents adaptation to the childs condition will have a major inuence on the coping of other family members, including the child. Adaptation has been dened by Hentinen & Kyngas (1998) as the degree to which parents cope psychologically, socially and physiologically with their childs chronic illness and is seen as an outcome of a coping process. Parents who adapt well will accept their childs chronic condition, be able to live with it, comply with carrying out their childs treatment and care and be able to meet the childs developmental tasks, their own needs and those of the family (Lazarus & Folkman, 1984). Canam (1993), Jerrett (1994) and Hentinen & Kyngas (1998) argue that parents and childrens abilities to express their feelings are connected with good adaptation, and if parents are able to identify and express their feelings, they can support the child in doing the same. According to Thompson et al. (1992), inhibitions in expressing emotions are a characteristic of poor adaptation, as parents avoid facing the real situation. Lynam (1992) argues that, in order to provide nursing care that is meaningful and effective, it is necessary that nurses have an understanding of the complex factors that inuence the familys responses to prescribed treatment regimes. The benets of Western biomedical science will not be realized unless nurses and doctors provide care in a way that is socially and culturally accepted to the family (Anderson, 1990). Lynam (1992) suggests that effective self-management requires the use of the nurse client negotiation model of care. This model recognizes that discrepancies exist between nurse and family about notions of health, illness and treatment, and it attempts to bridge the gap between the nurses scientic knowledge and the familys interpretations of the biomedical model, and beliefs and values derived from their sociocultural backgrounds. The model centres on nding out the familys understanding of their health problem and their understanding of the treatment process. In negotiation with the nurse, treatment is adapted to their particular situation. It is only when nurses understand

Role of paediatric diabetes specialist nurse important role of intention to behave, only behaviour itself. Nevertheless, the health belief model can be used by childrens nurses as a way of understanding the familys attitudes towards treatment and health (Buckingham, 1997). It is in relation to these psychological models that the paediatric nursing role needs to be explored and perhaps re-dened. Anderson (1981) argues that diabetes management is often presented within the context of Western medicine, where the major concern is with the disease process and therapeutic regimes. It could be suggested that it fails to acknowledge the sequence of emotions some parents go through as they mourn the loss of their healthy child (Coyne, 1997). Further, it assumes that parents, who appear in control when they are informed of their childs diagnosis, are actually coping. Gibson (1999) argues that parents of a child who has just been diagnosed with a chronic illness are passive recipients of care. If this is the case, parents may not feel that they have the knowledge or condence to challenge a decision about home management. Psychological support is essential in the care of children with diabetes. Bradley & Gamson (1994) believe that psychological well-being should be monitored alongside self-management regimes as a means of highlighting specic problems in coping. With support, parents and families adapt to their childs chronic illness and reshape their world to enable care-giving activities to become fully integrated into family life (Hatton et al., 1995).

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It is possible that further evidence is required for the re-denition of nursing approaches to childhood diabetes care, based on psychosocial constructs. Special consideration should be given to the way in which the paediatric nurse specialist approaches the guidance of children and their families through a change process, using psychosocial interventions to develop a personal model of care. Family-therapy-based interventions using accepted and understood personal models of psychosocial constructs should result in improved nursing interventions.

References
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Conclusion
Whilst it appears from the literature that it was urgent clinical necessity that drove the creation of many diabetes specialist posts, it could also be said that the specialist role developed out of a desire to improve standards and quality of patient care (Wade & Moyer, 1989; Jones, 1995; Wigens, 1998). This presented nurses with the opportunity to adopt a holistic nursing approach to care rather than a medical model (Vaughan, 1989). A holistic approach to care suggests that the paediatric diabetes nurse specialist role is central to the childs diabetes selfmanagement and disease control. More use of psychosocial constructs in developing nursing interventions would promote understanding of the personal and social meaning of diabetes and the familys attitudes towards treatment and health. It is argued that community childrens nurses are in a better position to facilitate parents and childrens abilities to express their feelings in their own environment using a nurseclient negotiation model of care (Anderson, 1990).
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