Establishing need for palliative care services for children/young people

CHILDREN’S NURSING

Establishing need for palliative care services for children/young people Ruth Davies Abstract This article describes how epidemiology may be used effectively to provide hard statistical data upon which to justify and base the development of paediatric palliative nursing services within a defined locality. Through an analysis of mortality data this study identified the number of children and young people with life-limiting (LL) conditions who met the criteria for paediatric palliative care (PPC) in South Glamorgan. Findings from this were then related to the provision of services, including nursing services, required to meet the PPC needs of children and those of their families within such a population. Outcomes identify the need for a multiprofessional/multiagency approach to care provision, including family nursing, respite and terminal care as well as postbereavement support. This study highlights how epidemiology may be used effectively to identify unmet needs and promote better systems of care delivery. Studies such as this strengthen the argument for nurses to cast aside what has been perceived as a hesitancy to use quantitative methods of research (Bonnell, 1999). Epidemiology, as a methodology, may now be deemed as yet another vital weapon in the nurse researcher’s armoury aimed at providing evidence-based health care.

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aediatric palliative care is a relatively new specialty that encompasses the care of children with a diverse and extensive range of life-limiting (LL) conditions such as cancer, severe cerebral palsy, and rare genetic disorders (Davies, 1999). It is defined by the Association for Children with Life-Threatening or Terminal Conditions and their Families (ACT), and the Royal College of Paediatrics and Child Health (RCPCH) (ACT/ RCPCH, 1997) as: ‘An active and total approach to care embracing physical, emotional and spiritual elements. It focuses on quality of life for the child and support for the family and includes management of distressing symptoms, provision of respite and care through death and bereavement.’

Ruth Davies is Lecturer in Nursing, St Cadoc’s, Caerleon, Gwent Accepted for publication: January 2003

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Identifying the number of children with LL conditions within a given child population may be regarded as the first step towards identifying the services required to meet their needs. This article will demonstrate how findings from an epidemiological study may be

used effectively to inform service providers in relation to the child population they serve and the nursing services that may be developed to meet their needs and those of their carers. Epidemiology has been defined as a quantitative science that measures the study of disease occurrence in human populations (Friedman, 1987). As Mulhall (2000) has claimed, this has led to it being ignored by nurses whose focus has been upon the needs of individual patients/clients and qualitative research methodologies. As Bonnell (1999) has also claimed, there has been a ‘hesitancy’ within the profession to adopt quantitative methods based upon a perception that these are inimical to nursing practice and research. The study that follows will support Mulhall’s (2000) call for a more epidemiologically informed profession and Bonnell’s (1999) assertion that nursing should embrace multiple methods of research as a means of demonstrating evidence-based practice initiatives and the unique contribution we make to healthcare outcomes. To put this study into context it was considered helpful to set out the present state of service provision within the UK for this group of children. Ideally, paediatric palliative care includes the provision of nursing within the home, respite, terminal care (hospital, home, or children’s hospice) and postbereavement support to families. However, these are not always accessible to families. Successive reports have identified that not all parts of the UK are served by community children’s nursing teams and few are able to provide the 24hour service that families need (National Council for Hospice and Specialist Palliative Care Services (NCHSPCS)/ACT/Association of Children’s Hospices (ACH), 2001). It may be assumed therefore that only a minority of children have access to family nursing in the home that, in addition to practical care, provides information, family counselling, and advocacy (Whyte, 1992; Claveirole et al, 2001). Advocacy is defined as a nurse assuming the role of keyworker

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NURSING, 2003, VOL 12, NO 4

ESTABLISHING NEED FOR PALLIATIVE CARE SERVICES FOR CHILDREN/YOUNG PEOPLE

and ensuring a multiprofessional/multiagency approach to care (Davies, 1999). Without this, many children do not receive support from health or social services or those of voluntary agencies such as children’s hospices (Davies, unpublished work, 2002). The majority of children in need of palliative care are those with non-malignant LL conditions such as severe cerebral palsy or muscular dystrophy (ACT/RCPCH, 1997). Some will be totally dependent upon their carers for all their needs from birth, e.g. babies with conditions such as severe cerebral palsy or spinal atrophy. Others will become totally dependent because of the progressive deterioration associated with conditions such as Huntington’s chorea or muscular dystrophy and many are surviving longer because of advances in medical and nursing therapies (ACT/NCHSPCS/SPAPCC, 2001). For example, life expectancy for a child diagnosed with severe cerebral palsy (Hutton et al, 1994) or muscular dystrophy (Modell and Modell, 1992) is now late adolescence. Children with non-malignant LL conditions, therefore, represent increasing levels of care as well as years of care for their parents who in most cases are their main carers. Studies have shown that these unremitting care responsibilities affect parental health, leading to high levels of physical exhaustion, stress, and psychological morbidity (Cairns, 1992; Beresford, 1995; Pain, 1999; Lenton et al, 2001). Although respite would give parents such as these a break from care, consecutive reports (Bone and Meltzer, 1989; While et al, 1996) have identified a dearth of provision and some parents never receive it (House of Commons Health Committee, 1997). Although children’s hospices are able to offer a range of respite choices, including respite as a family, i.e. the child, parents and siblings all resident, or planned respite for the child alone or during an emergency (Farrell, 1996; Davies, 1998), there are only 22 such hospices throughout the UK, so many families do not have access to these (NCHSPCS/ACT/ACH, 2001). Likewise, although some Diana community children’s nursing teams, set up in 1999 to provide palliative care, are able to provide respite at home, these currently only number 10 throughout the UK so many do not have access to this service either (Davies and Harding, 2002a). While services for children with malignant conditions are well developed providing a

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network of family nursing support, terminal care at home, and postbereavement support to families throughout the UK (Hunt, 1996), for those with non-malignant conditions services are far less well developed. It is apparent that if there is to be equity of provision for all children with LL conditions then statistical evidence as to their actual number must be available to inform service providers on both a national and local basis. Until quite recently there was little hard statistical evidence to show the extent of LL conditions within child populations, as collection of data was hampered by the lack of criteria to define what constituted an LL condition. While et al (1996) were the first to carry out an extensive review of mortality rates of ‘life-limiting incurable conditions’ in children aged 1–17 years during 1987–1991 across England and Wales. Their findings established that annual mortality from these conditions is 1 per 10 000. Findings also identified that two-fifths of all deaths for children aged between 1 and 9 years could be attributed to these conditions. Other findings identified that deaths from neoplasms accounted for a substantial number of deaths across all age cohorts, while deaths from myopathies and transport conditions of metabolism were greater in later childhood. Since this groundbreaking study, the ACT and RCPCH, in their working party report (ACT/RCPCH, 1997), have set out strict criteria for defining LL conditions delineated into four broad groups (Table 1). This same

Table 1. Life-limiting conditions: four main groups Group 1: Life-threatening conditions for which curative care may be feasible but can fail. Palliative care may be necessary during periods of prognostic uncertainty and when treatment fails. Children in long-term remission or following successful curative treatment are not included, e.g. cancer, irreversible organ failures of heart, liver, kidney Group 2: Conditions where there may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal childhood activities, but premature death is still possible, e.g. cystic fibrosis, muscular dystrophy Group 3: Progressive conditions without curative treatment options, where treatment is exclusively palliative and may commonly extend over many years, e.g. Batten’s disease, mucopolysaccharidosis Group 4: Conditions with severe neurological disability which may cause weakness and susceptibility to health complications and may deteriorate unpredictably, but are not usually considered progressive, e.g. severe multiple disabilities such as following brain or spinal cord injuries, including some children with severe cerebral palsy Source: ACT/RCPCH (1997)

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report emphasized that epidemiological studies of the prevalence of these conditions are needed ‘urgently’ as ‘evidence upon which to base clinical practice’. Mulhall (2000) has described how epidemiology is able to provide hard statistical evidence for the planning, delivery, and evaluation of health services. As findings from this study will demonstrate, this is particularly evident in relation to the future planning and development of paediatric palliative care services for children and young people in a defined locality.

Figure 1. Health authority boundaries operative since April 1996. Reproduced with kind permission of National Assembly of Wales.

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This is primarily a descriptive study of mortality data for children and young people aged 0–19 years in South Glamorgan during the period 1990–1995 with particular focus upon the incidence of LL conditions. As shown in Figure 1, this part of Wales includes the city of Cardiff, the most densely populated area of the country, as well as the rural Vale of Glamorgan. Data from death certificates were sought from the Office of National Statistics (ONS, 1995). Under the Births and Deaths Act 1953 each certificate includes the deceased’s name, surname, date of birth, and age at death (Dean, 1993). Each certificate also records the actual cause(s) of death as well as any underlying cause(s) such as a LL condition. Place of death, e.g. hospital or home, is also recorded. A total of 6 years’ data were sought (1990–1995) while the ninth and tenth revisions of International Classification of Diseases (ICD) recorded on certificates facilitated collection of data according to LL condition. Data analysis included date of birth, underlying as well as actual cause(s) of death, ICD codes, year as well as actual cause(s) of death and place of death (hospital, home, or hospice). These data were transferred to a computer software program, EXCEL/ACCESS, that allowed rapid sorting of data using single or multiple codes.

Ethical considerations

METHODS

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Data relating to mortality, especially death certificates, represent highly sensitive information. The principle of non-maleficence, i.e. not causing harm (Beauchamp and Childress, 1989) to the families of children included in this study, guided all aspects of the research process. Approval was sought and given by the local ethics committee on the basis of the following safeguards. First, only the researcher and supervisor would have access to certificates and other data. Second, information that identified individuals would not be used. The study was also subject to the Data Protection Act 1994 and all data were kept in a locked filing cabinet within a secure place. The EXCEL/ACCESS program was protected by a user access password and any information that identified families was omitted. STUDY FINDINGS

Mortality from all causes Initial data analysis showed that the total number of deaths in children and young people aged

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0–19 years during 1990–1995 was 361 with a range of 48–65 deaths per annum (mean of 60 deaths per annum). In 1996, the total child population for this age group within South Glamorgan was 110 366 (ONS, 1995). With a mean expected death rate of 60 per annum this is equivalent to 5.45 deaths per 10 000 from all causes. The majority of deaths occurred in neonates, defined as those aged between 0 and 27 days, and infants, defined as those aged between 28 and 364 days (Waterston et al, 1997). Major causes of deaths were found to mirror national findings and were prematurity (Confidential Enquiry into Stillbirths and Deaths in Infancy, 1997), accidents (Jarvis et al, 1995), and sudden infant death syndrome (Conroy and Smith, 1999), as shown in Table 2.

Mortality from LL conditions At this stage conditions that did not meet the strict criteria for an LL condition were separated from the preceding total. Remaining LL conditions, as defined by the Joint Working Party (ACT/RCPCH, 1997), were then classified under the major disorders listed in Table 3. Thus, it was possible to establish that the total number of LL deaths was 98, representing just over a quarter (27%) of all deaths (n = 361). Mortality was associated with a wide range of disorders. In descending order of incidence these were neoplasms, congenital heart disease, muscle disease, and severe cerebral palsy, as shown in Table 4.

Mortality according to age cohort The ONS record and publish mortality data according to age cohorts and it was considered helpful to adopt the same practice for this study because age is a key factor in predicting mortality for some LL conditions. For example, congenital malformations account for one in five deaths in children under the age of 5 years (Botting and Crawley, 1995) and it is estimated that 50% of boys diagnosed with muscular dystrophy will die before the age of 15 years (Modell and Modell, 1992).

Mortality from LL conditions in infant cohort Previous studies have not always included children under the age of 1 year when calculating incidence of LL conditions (Soutter et al, 1994; While et al, 1996). The decision to include this age group was made on the basis that both they and their parents as carers have palliative care

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needs. Deaths that met this criteria accounted for 25 in all, of these 15 were owing to congenital heart disease. Other causes in descending order of incidence were cerebral palsy, central nervous system disorders and muscular atrophies. Eight of these children died at home

Table 2. Mortality from all causes age 0–19 years (South Glamorgan 1990–1995) Division

Number

Percentage

Accident

54

15.0%

Birth asphyxia

11

3.0%

Central nervous system disorders

9

2.5%

Chronic liver failure

4

1.1%

Chronic renal failure

1

0.3%

Congenital disorders

32

8.9%

Congenital heart disease

21

5.8%

Infections

30

8.3%

Metabolic disorders

6

1.7%

Mucopolysaccharide disease

1

0.3%

Muscle disease

11

3.0%

Neoplasms

25

6.9%

Prematurity

90

24.9%

Severe cerebral palsy

9

2.5%

Severe learning difficulties

4

1.1%

38

10.5%

Unascertained

7

1.9%

Unlawful

8

2.2%

Sudden infant death syndrome

Total

361

Table 3. Classification of life-limiting conditions under major disorders Central nervous system disorders, e.g. schizencephaly, lissencephaly Chronic liver failure Chronic renal failure Congenital disorders, e.g. chromosomal abnormalities Congenital heart disease Metabolic disorders, e.g. Zellweger’s syndrome Mucopolysaccharide disease, e.g. Hunter’s syndrome Muscle disease, e.g. muscular dystrophy Neoplasms (leukaemias and solid tumours) Severe cerebral palsy Severe learning difficulties, e.g. Cockayne’s syndrome

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in an age range spanning 2 days–8 months. This represents a small but significant number of home deaths for, while some of these may have occurred suddenly and unexpectedly, it is probable that some parents made the decision for their child to die at home.

Mortality from LL conditions in age 1–4 years cohort Deaths from LL conditions numbered 23 in this age cohort. These in descending order of incidence were neoplasms, congenital heart disease, cerebral palsy, muscular dystrophy, and congenital disorders. By condition, neoplasms accounted for the greater number of deaths, i.e. five deaths. The majority of deaths from LL disorders took place in hospital with only five deaths at home, of these only one was from a neoplasm.

Mortality from LL conditions in age 5–9 years cohort Deaths that met this criterion accounted for 12 in all. These in descending order of incidence were neoplasms, cerebral palsy, congenital heart disease and central nervous system disorders. The majority of these took place in hospital with only six home deaths, of these four were from neoplasms.

Mortality from LL conditions in age 10–14 years cohort Deaths that met this criterion accounted for 16 in all. By condition, neoplasms predominated

Table 4. Mortality from life-limiting conditions age 0–19 years (South Glamorgan 1990–1995) Division

Number

Percentage

Central nervous system disorders

9

9.2%

Chronic liver failure

3

3.1%

Chronic renal failure

1

1.0%

Congenital disorders

7

7.1%

representing just under a third of all such deaths. Other LL deaths were muscular dystrophy, cystic fibrosis, and spina bifida. The majority of these took place in hospital with only six home deaths, of which four were from neoplasms.

Mortality from LL conditions in age 15–19 years cohort Deaths that met this criterion accounted for 22 in all. Of these, nine were due to neoplasms. A number of young people died from LL conditions such as severe learning difficulties (n = 3), cerebral palsy (n = 3) and muscular dystrophy (n = 2). These are of poignant significance representing as they do a lifetime of increasing care for parents. It should be noted that two adolescents died from neoplasms in an adult hospice. Although LL deaths only accounted for 22 of the 63 deaths in this cohort the predominance of deaths owing to risk-taking activities such as accidents and drug overdoses should be taken into account. To summarize, a small but significant number of infants met the criteria for an LL condition and a small number of these died at home. These outcomes suggest that this age group should now be included in future studies, bearing in mind that for some conditions early death may be predicted or warnings given of an increased susceptibility to death in infancy. Mortality from LL conditions in age cohorts 1–4 years, 5–9 years, and 10–14 years accounted for half of all deaths. While mortality from LL conditions in the age cohort 15–19 years only accounted for a third of all deaths this was attributable to the high number of deaths from risk-taking activities. These findings are summarized in Table 5, according to age cohort. HOME DEATHS FROM LL CONDITIONS

Congenital heart disease

21

21.4%

Metabolic disorders

6

6.1%

Mucopolysaccaride disease

1

1.0%

Muscle disease

11

11.2%

Neoplasms

25

25.5%

Severe cerebral palsy

10

10.2%

Severe learning difficulties Total

228

4 98

4.1%

Only a small number of deaths occurred at home — 60 in total representing 17% of all deaths (n = 361). Of this total it should be noted that 23 were attributed to sudden infant death syndrome while another two were unascertained. Home LL deaths accounted for only 32, representing just over half of all home deaths. For the age cohorts 5–9 years and 15–19 years all home deaths were from LL conditions as summarized in Table 6. By condition, neoplasms, i.e. malignant LL conditions, represented just over a third (n = 12) of all home deaths (n = 60) as summarized in Table 7.

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There can be no doubt that during 1990–1995 there were a considerable number of deaths from all causes and that mortality from LL conditions accounted for a significant number of these, as summarized in Figure 2. At this stage the author is aware that any study that focuses on numerical data, and is essentially quantitative, lays itself open to the criticism of reductionism, i.e. of reducing people — or in this case children — to numbers and individuals to conditions. It is not the intention of this study to overlook the fact that each death recorded here represents the loss of a child. DISCUSSION

Findings from this study identified that out of a total of 361 deaths from all causes, 98 (27%) met the criteria for an LL condition. Findings also established an incidence of 0.98 LL conditions per 10 000 in this local population (1–17 years) comparable with that of 1:10 000 established by While et al (1996). Unlike previous studies (Soutter et al, 1994; While et al, 1996) infants were included and findings established 25 infant LL deaths. By condition, neoplasms and congenital heart disorders accounted for a significant number of LL deaths. Other causes in descending order of incidence were muscle disease, cerebral palsy, central nervous system disorders, congenital disorders, and severe learning difficulties. Age at death was considered a useful indicator of the palliative care services needed within this locality, hence the decision to group these children by age cohort. Findings established that a significant number of children died in early and late adolescence from LL conditions such as muscular dystrophy, severe cerebral palsy, and severe learning difficulties. It was also established that these represented a lifetime of increasing care for parents as carers. It may be assumed that families such as these would have benefited from family nursing support as well as respite. During the period 1990–1995 there was no community children’s nursing teams operating within the locality and respite was not always available to families either (Davies, unpublished work, 2002). Home deaths were considered a useful indicator of the possible demand for terminal care at home. For this outcome it was established that a significant number of infants (n = 8) died at home from LL conditions while for age

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cohorts 5–9 years and 15–19 years all home deaths were from LL conditions. By condition, the majority of LL home deaths were from cancer and it should be noted that these children would have received terminal care from the paediatric oncology specialist unit.

Table 5. Summary of mortality (all causes and life-limiting (LL) conditions) according to age cohorts 0–19 years (South Glamorgan 1990–1995) Age cohort

Deaths (all causes)

Deaths (LL conditions)

Under 1 year

202

25 (12%)

1–4 years

43

23 (53%)

5–9 years

21

12 (57%)

10–14 years

32

16 (50%)

15–19 years

63

22 (35%)

361

98 (27%)

0–19 years

Table 6. Home deaths by age cohort from all causes and life-limiting (LL) conditions age 0–19 years (South Glamorgan 1990–1995) Age cohort

Home deaths (all causes)

Under 1 year

34

8 (24%)

1–4 years

6

5 (83%)

5–9 years

6

6 (100%)

10–14 years

7

6 (86%)

15–19 years

7

7 (100%)

0–19 years

60

Home deaths (LL conditions)

32 (53%)

Table 7. Home deaths by age cohort for neoplasms and other life-limiting (LL) conditions age 0–19 years (South Glamorgan 1990–1995) Age cohort

Home deaths (LL conditions)

Home deaths (neoplasms)

Under 1 year

8

0

1–4 years

5

1 (20%)

5–9 years

6

4 (67%)

10–14 years

6

4 (67%)

15–19 years

7

3 (43%)

32

12 (38%)

0–19 years

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Other outcomes established that two older adolescents died from cancer in an adult hospice. While is it recommended that neither children nor adolescents should receive terminal care in an adult hospice (ACT/RCPCH, 1996), it should be noted that between 1900 and 1995 there was no local children’s hospice for families to access. Finally, a considerable number of families experienced the loss of a child during this period (n = 361), including those who experienced the loss of child with a LL condition (n = 98). These findings alone highlight the number of families who may have been in need of postbereavement support. IMPLICATIONS FOR PRACTICE

Figure 2. Summary of mortality from all causes and life-limiting conditions by age cohort 0–19 years (South Glamorgan 1990–1995).

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Since this study, Ty Hafan Children’s Hospice, opened in 1999, and is now able to provide respite and terminal care to children and young people aged 0–18 years (Whittle and Cutts, 2002). The recent establishment (October 2002) of the first community children’s nursing team within former South Glamorgan also means families in the future may benefit from palliative care services within the home. It may be assumed that future epidemiological studies may show an increase in the number of home deaths because of these new services. There is, however, still perhaps a need to establish a Diana community nursing team to provide a continuum of paediatric palliative care to include family nursing support, respite, terminal care, and post-bereavement support.

An evaluation of the Diana community nursing team, Leicester (Danvers et al, 2002), has now identified a framework of care that is able to deliver a seamless service of care to families. This framework is underpinned by the multiprofessional nature of the team itself which includes a clinical psychologist, respite nurses, residential respite team, occupational therapist, play specialist, cultural link worker, oncology and community children’s nurses, and a parent support group. Likewise, other Diana teams across the UK have developed innovative practices in response to the particular needs of the local child population. The Diana Team in North Wales which covers an extensive geographical area has recruited and trained local respite carers to care for children in their own home. Through multiprofessional/multiagency working with health, education and social services and local children’s hospices, they are able to provide seamless care and in addition organize social events with the children, their families and carers (Davies and Harding, 2002a,b). CONCLUSIONS

Findings from this study have demonstrated how epidemiology can provide hard evidence to justify the development of new and innovative services such as children’s community nursing services and Diana teams. Through its application it has been possible to explore the relationship between unmet needs in a defined locality and justify the allocation of resources to this vulnerable group of children and families based upon current evidence-based practice. As Mulhall (2000) has claimed, epidemiology can provide the mechanism for the efficient planning and delivery of nursing services for those who need them most. Findings from studies such as this vindicate Mulhall’s call for an epidemiologically informed profession (Mulhall, 2000) and for the inclusion of this academic discipline within the educational curriculum (Mulhall, 1996). It may be stated that the application of epidemiolgy may be used effectively for the benefit of patients and client groups, and provide the means for the profession to take a more active role in the planning, implementation, and evaluation of the services they provide. As has been observed by Dossey (1999), Florence Nightingale was one of the first to make use of this methodology to benefit patients. Her analysis of mortality data in the

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KEY POINTS ■ This epidemiological study through analysis of mortality data identified that a significant number of children and young people aged 0–19 years died from life-limiting (LL) conditions in a defined locality of Wales. ■ Outcomes from this study established the need for family nursing support to meet the palliative care needs of children and their families. ■ Outcomes from evidence-based practice highlight how Diana community children’s teams set up to provide palliative care can meet the needs of children and their families through a multiprofessional/ multiagency approach. ■ Epidemiology may be used effectively in the planning, implementation, and evaluation of nursing services to benefit patients and clients and demonstrate the unique contribution nurses make to care.

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Crimean War was instrumental in the establishment of an army nursing service. Use of this method then fell into abeyance within the profession until a resurgence in the 1990s as evidenced by the work of Mulhall (1996, 2000) and While et al (1996). The inclusion of epidemiology within the new preregistration curriculum, Fitness for Practice and Purpose (Nursing and Midwifery Council, 2001), may now provide the impetus for nurses to overcome any remaining hesitancy (Bonnell, 1999) they have in the adoption of quantitative research methods. This may lead to a new generation of nurses who will regard epidemiology as yet another useful weapon in the research armoury aimed at improving care and services to parents and clients as well as demonstrating our contribution to health care. LIMITATIONS TO THE STUDY

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