Art & science | life-limiting conditions
Innovative approach to providing 24/7 palliative care for children Linda Maynard and Deborah Lynn give an account of a service that filled a critical gap in provision and empowered families to make choices about care Correspondence [email protected] Linda Maynard is a nurse consultant Deborah Lynn is a clinical nurse specialist Both at East Anglia’s Children’s Hospices Date of submission August 27 2013 Date of acceptance January 15 2014 Peer review This article has been subject to open peer review and checked using antiplagiarism software Author guidelines ncyp.rcnpublishing.com
Abstract This study outlines an innovative, English hospicebased service that provides 24/7 care for children with life-limiting conditions and their families. Operational objectives were: symptom management; open access to families and professionals; choice in place of care and of death; and collaboration to develop shared pathways and management plans. Service standards were audited through questionnaires completed by professionals and families. Findings demonstrated that the nursing team filled a critical gap and met its pre-set standards. Keys to success were: having the right level and mix of specialist and advanced skills; funded on-call arrangements; anticipatory planning; symptom management plans; and clinical supervision. Further recommendations were to develop a multi-agency workforce strategy, and to increase capacity in the children’s sector to undertake academic research measuring the impacts of interventions. Keywords Children’s hospice, end-of-life care, paediatric palliative care, paediatric symptom management, 24/7 THE SOCIO-POLITICAL agenda and financial climate in England are urgent drivers for change in the management and delivery of health services (Department of Health (DH) 2011). There is a need to find different ways of providing support closer to home, reducing costs and standardising care pathways to reduce variation, while responding to choice and improving clinical outcomes. In light of growing evidence of gaps in provision, the children’s palliative care (CPC) sector is challenged to provide
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support to children 24 hours a day, seven days a week (24/7) (Association for Children’s Palliative Care (ACT) 2011). This article summarises the findings of a larger study (Maynard 2012) and evaluates the effectiveness of delivering 24/7 children’s palliative care across a network spanning four counties in one English Strategic Clinical Network, hosted by a children’s hospice service. The evaluation, undertaken after 18 months of service delivery, analysed feedback from health professionals, hospice care professionals and families.
Literature review The ‘gold standard’ principles for children are the nationally recognised ACT standards, which have guided the development and delivery of children’s palliative care over the past ten years (ACT 2009). Embedded in these standards is the principle that children and their families have a right to expect 24-hour access to symptom control including access to medication and suitably qualified and experienced practitioners. Despite many national reviews and policy guidance that have recommended provision of 24/7 access to clinical expertise in the home (House of Commons Select Committee 1997, DH 2007, 2009), significant gaps remain in services that should provide local nursing support at any time of the day or night. Service specifications must recognise that need is not regulated by office hours (Parker et al 2011). Children’s community nursing teams (CCNs) are the bedrock of care for children with life-limiting conditions and are best placed to support them at home 24/7 (Craft and Killen 2007). However, almost half of CCN services surveyed by Parker et al (2011) were available on weekdays only, highlighting July 2014 | Volume 26 | Number 6 27
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Art & science | life-limiting conditions Table 1
Ten service delivery standards used to assess provision Family (%)
To what extent does the 24/7 team provide
Not at all
To some extent
24/7 symptom management advice/support
Statutory professionals (%)
Mostly
As much as needed
1 (5)
Not at all
To some extent
Mostly
As much as needed
20 (95)
1 (2)
3 (7)
39 (91)
Specialist level of knowledge/expertise
1 (4)
2 (9)
20 (87)
2 (4)
14 (31)
30 (65)
Response to queries within four hours
1 (5)
7 (35)
12 (60)
2 (5)
11 (29)
25 (66)
Assessment of child’s physical symptoms
7 (32)
15 (68)
6 (14)
6 (14)
32 (72)
Assessment of child’s emotional symptoms*
4 (27)
11 (73)
5 (14)
3 (8)
28 (78)
Development of an appropriate management plan
3 (14)
18 (86)
3 (7)
12 (27)
29 (64)
Care and support for child wherever needed
2 (9)
20 (91)
1 (2)
8 (20)
32 (78)
1 (2)
A link between home/ hospice/hospital
1 (4)
3 (14)
18 (82)
4 (9)
10 (21)
33 (70)
Direction to other services or professionals
2 (10)
4 (20)
14 (70)
1 (2)
11 (26)
30 (72)
Advocacy for child
1 (5)
2 (11)
16 (84)
4 (10)
6 (15)
29 (73)
1 (2)
*Comparison between statutory and hospice professional groups was significant: U=629; P=.045; r=.22
the significant gap between strategic rhetoric and service reality. ‘Out of hours’ (OOH) provision of health services is an important element of the adult end-of-life care strategy and has been reviewed extensively (Brumley et al 2006, Fergus et al 2010, Taubert and Nelson 2010). All reviewers note challenges related to: Continuity of care. Sharing of clinical information between sectors. Inadequately staffed rotas. Lack of clarity about role boundaries. Anxiety related to controlled drugs in the home. Reduced access to drugs and equipment. Isolation when working OOH shifts. Access to appropriate medical advice. Further research has been recommended on how weekend working affects weekday cover and whether telephone advice is sufficient or home visits are necessary (Kendall and Jeffrey 2003). Recommendations have included: identifying clear funding for on-call work (Neilson et al 2010); use of 28 July 2014 | Volume 26 | Number 6
patient-held records (Fergus et al 2010); ensuring effective management of lone working; and making clinical supervision available (Neilson et al 2010, Taubert and Nelson 2010).
Aims The vision for this new service was to ensure that all children with a palliative care diagnosis had 24-hour access to high quality symptom management. Service objectives were also to offer children and families location choices, to work in partnership with statutory services and, for the specialist nursing team, to act as a catalyst for improvement, learning and development and to establish adequate supervision and debriefing.
The service The consultant nurse-led service was delivered across an area of approximately 5,125 square miles, with a total population of 2.8 million including 690,000 children aged under 19 years (Office for NURSING CHILDREN AND YOUNG PEOPLE
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Hospice professionals (%) Not at all
1 (2)
To some extent
Mostly
Combined (%) As much as needed
Not at all
To some extent
Mostly
As much as needed
9 (16)
47 (84)
1 (1)
13 (11)
106 (88)
1 (2)
18 (31)
39 (67)
4 (3)
34 (27)
89 (70)
1 (2)
15 (31)
33 (67)
4 (4)
33 (31)
70 (65)
10 (19)
42 (81)
6 (5)
23 (20)
89 (75)
5 (11)
17 (38)
23 (51)
10 (10)
24 (25)
62 (65)
3 (5)
11 (20)
41 (73)
6 (5)
26 (21)
88 (72)
2 (4)
14 (26)
38 (70)
3 (3)
24 (21)
90 (77)
12 (21)
45 (79)
5 (4)
25 (20)
96 (76)
14 (25)
42 (75)
3 (3)
29 (25)
86 (73)
7 (14)
42 (84)
6 (6)
15 (14)
87 (80)
1 (2)
National Statistics 2011). The service provided 24/7 symptom management advice and hands-on support for children and young people at any stage of palliative care, including at the end of life. The team consisted of five clinical nurse specialists (CNSs) in children’s palliative care, employed by the children’s hospice service, who had advanced nursing skills and a range of previous experience across hospice, community and acute sectors. The nurse consultant managed the service and the CNSs and was the principal evaluator. An administrator and an independent evaluation assistant were recruited to support the project. Medical support by a lead paediatrician was available to the CNSs and specialist palliative care support was provided by one part-time CPC consultant and four paediatricians with a specialist interest (postgraduate qualification in palliative care). The CNSs spanned organisational boundaries, working across the range of settings (hospice, home, community and acute), with honorary contracts NURSING CHILDREN AND YOUNG PEOPLE
2 (2)
1 (1)
from local statutory services to integrate this way of working in a multi-agency ‘team around the child’. Access to the service was through referral by professional or family members or via a care pathway (oncology and neonatal clients). Nursing was delivered Monday to Friday, 8am-6pm, with an on-call system at night and weekends. Families and professionals were given one telephone number for contact, day or night. Using an established GP OOH call-handling organisation to manage calls between 6pm and 8am (rather than, for example, pager or answerphone) reduced risk of equipment failure or error, enabled families to feel reassured that their call was being actively dealt with and reduced stress for CNSs.
Methods Audit methodology was used to assess provision against ten service delivery standards (Table 1). Seven questions were devised by the authors to assess usefulness of and satisfaction with elements of the service specification, and a further question July 2014 | Volume 26 | Number 6 29
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Art & science | life-limiting conditions Table 2
Usefulness of key elements of service specification Family (%)
How useful have you found:
Not at all
External professionals (%)
Somewhat
Mostly
Very
Not at all
1 (6)
2 (11)
15 (83)
1 (3)
Practical care given by the team
2 (11)
16 (89)
Support/advice given by the team*
2 (9)
20 (91)
Out-of-hours call-handling service†, ‡
1 (6)
17 (94)
SMP-written by the lead consultant or the team
Somewhat
Mostly
Very
2 (5)
7 (18)
28 (74)
1 (2)
2 (4)
7 (15)
38 (79)
1 (2)
3 (6)
11 (23)
33 (69)
1 (3)
7 (19)
28 (78)
SMP = symptom management plan. *Comparison between family and statutory professional groups was significant: U=407; P=.041; r=.24 †Comparison between family and hospice professional groups was significant: U=271.5; P=.01; r=.32 ‡Comparison across all three groups was significant: H=7.896; P=.019; df=2
Table 3
Levels of satisfaction with service Family (%)
Team qualities/overall satisfaction
Not at all
Somewhat
Mostly
External professionals (%) Very
Not at all
Somewhat
Mostly
Very
1 (2)
4 (8)
8 (17)
35 (73)
3 (13)
20 (87)
How reliable is the team?
3 (13)
20 (87)
1 (2)
7 (15)
39 (83)
How flexible is the team?
3 (14)
18 (86)
2 (5)
8 (19)
32 (76)
How satisfied are you with the service provided by the team?
1 (4)
22 (96)
4 (8)
6 (12)
38 (78)
How responsive is the team in meeting the child’s/family’s needs?
elicited views on satisfaction with the service overall. Participants were required to indicate the extent to which they agreed or disagreed with statements. Two open-ended questions were designed to elicit information on perceived benefits, challenges and ideas for improvement. Ethical considerations Ethical principles were promoted throughout all stages of the evaluation to safeguard the anonymity and confidentiality of all participants. Participants could withdraw from the evaluation process at any time without their care or any future care being affected in any way. Ethical approval was obtained from the ethics committee of the Faculty of Health and Social Care, London South Bank University. All families who used the service for nine months between April 2011 and January 2012 were included. Bereavement was not an exclusion criterion but consideration was given to the timing of the 30 July 2014 | Volume 26 | Number 6
1 (2)
initial approach (Hynson et al 2006). The sampling frame of professionals consisted of all statutory (69 medical practitioners and 60 nurses – acute, community and CNSs) and hospice professionals (121 from the hospice multidisciplinary care team) who had contact with the 24/7 team during the same period. No professionals other than the CNSs worked across all sectors. Quantitative data from the structured elements of questionnaires from all stakeholders were managed by the principal evaluator using SPSS version 19. Basic descriptive statistics were generated to illustrate responses, the Mann-Whitney U-test was used to compare stakeholder responses, and Kruskal-Wallis oneway analysis of variance (the H test) compared data for all three groups so that valid percentages were generated. Missing data were identified and percentages were estimated. Qualitative data from the two open-ended questions were transcribed verbatim by the project NURSING CHILDREN AND YOUNG PEOPLE
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Hospice professionals (%) Not at all
Somewhat
Combined (%)
Mostly
Very
Not at all
Somewhat
Mostly
6 (12)
46 (88)
1 (1)
3 (3)
15 (14)
89 (82)
1 (2)
11 (20)
43 (78)
1 (1)
3 (3)
20 (17)
97 (80)
1 (2)
13 (23)
43 (75)
1 (1)
4 (3)
16 (21)
96 (76)
6 (13)
11 (25)
28 (62)
7 (7)
19 (19)
73 (74)
Hospice professionals (%) Not at all
Somewhat
Very
Combined (%)
Mostly
Very
Not at all
Somewhat
Mostly
Very
9 (17)
45 (83)
1 (1)
4 (3)
20 (16)
100 (80)
8 (15)
47 (86)
1 (1)
18 (14)
106 (85)
1 (2)
16 (28)
40 (70)
3 (3)
27 (23)
90 (75)
2 (3)
8 (14)
48 (83)
6 (6)
15 (12)
108 (83)
administrator into Microsoft Word 2007. Data were analysed thematically using a framework approach where text was summarised into a matrix and arranged by categories and participants. Thematic analysis was undertaken independently by the principal evaluator and the evaluation assistant, and discussion helped to clarify and describe the coded patterns among the data.
Findings A total of 298 questionnaires were distributed and 139 returned, yielding an overall response rate of 47% (families n=26 (54%); hospice professionals n=60 (50%); statutory professionals n=53 (41%)). Table 1 shows that access to 24/7 symptom management advice and support was highly valued, with most respondents (88%) reporting as much provision as was needed or wanted. Ten per cent of respondents to assessment of a child’s emotional symptoms reported that this was provided to some extent only. NURSING CHILDREN AND YOUNG PEOPLE
1 (1)
Table 2 shows that, with the exception of two items (‘response to telephone/email queries within 4 hours’ and ‘assessment of child’s emotional symptoms’), all items scored highly, with 75% of respondents indicating top scores in all categories. Table 3 reveals that extremely high levels of satisfaction were reported (from 108 participants, 83%) and 75% or more of respondents rated the team extremely responsive, reliable and flexible. Comparing families and external professionals, data revealed that there was significant difference in the item ‘usefulness of support and advice by the team’ (U=407; P=0.041; r=0.24). Analysis of the OOH call handling service item showed significant difference between family and hospice professional responses (U=271.5; P=-0.01; r=0.32) and between the responses of all three groups (H=7.896; P=0.019; df=2). Figures in Tables 1-3 may not total 100% due to rounding. July 2014 | Volume 26 | Number 6 31
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Art & science | life-limiting conditions Qualitative data were provided by all three stakeholder groups (Table 4). All identified similar beneficial areas such as 24/7 availability, care in any location and that the team had filled a gap in service provision. Only families articulated the benefit of the team having time to spend with them, whereas the benefits of symptom management planning for end-of-life care, and support for colleagues and families, were common to both professional groups. Suggestions were made for improving access to the team and promptness of replies via the call-handling service, and the need for enhanced communication and liaison with statutory services. Hospice professionals recommended increasing integration through joint working on assessments and development of symptom management plans. Families suggested that jargon-free language in written care plans would be helpful. A small proportion (2) of statutory professionals proposed that 24/7 nursing services in the community should be core-funded by the NHS rather than being provided by the voluntary sector.
Discussion The majority (88%) of respondents thought the team provided as much 24/7 symptom management advice and support as was needed. A minority of respondents (10%) commented that assessment of a child’s emotional symptoms was met to some extent only, and this reflected the focus on physical symptoms in written management plans. Practical components of the service were also rated highly, with 75% of respondents indicating that symptom management plans and practical support/advice were very useful. These items correlated well with the four categories of calls suggested by Bradford et al (2012): communication, practical issues, symptom management and emotional support. This affirms the composition of the core specification of this service and reinforces the benefit of a holistic approach. Team qualities such as responsiveness, flexibility and reliability were reported in the literature as attributes that are valued by families (Carter et al 2009) and recommended by policy and practice guidance (DH 2008a, 2008b, ACT 2009). All stakeholder groups rated these qualities very highly in the team, although it could be argued that feedback gathered in this way provides a superficial view, because it does not develop deeper understanding of the meaning of these qualities as they relate to 24/7 children’s palliative care services. 32 July 2014 | Volume 26 | Number 6
In addition, fully independent evaluation would have reduced the potential for bias from service users wishing to please. A high level of satisfaction overall was reported. Although the majority of professionals welcomed this service development, professional gate-keeping was experienced by the team when engaging with some statutory organisations (Sharkey et al 2010). The view that 24/7 charitable services should only enhance NHS services is an outdated one. The hospice sector has a clear role in CPC and is a true partner agency in many networks. As a low-volume specialty, CPC is best developed by networking across a large geographical area, co-ordinating resources and making better use of the skills of paediatricians with special expertise (Vickers et al 2011), community children’s nursing teams and children’s hospice nurses (Carter et al 2009, Parker et al 2011). Vickers et al (2011) further argued that some hospice services, with cross-boundary catchment areas and good relationships with commissioners, are well placed to encourage developments such as the 24/7 team, as they are unconstrained by statutory limitations. However, some children’s hospice services suffer from isolation and access problems, with NHS professionals viewing them as respite care providers and as limited in terms of providing effective symptom control across the 24-hour period (Maynard 2009). Professional roles were not well described in the CPC literature reviewed, but evidence from the adult health and social care sector identified a number of barriers to interprofessional working – for example, lack of ability to communicate clear vision (Northouse 2010) and lack of respect for professional diversity (Frost and Robinson 2007). The introduction of joint protocols and documentation are strategies that can aid integration of new teams (Frost and Robinson 2007, Hickey 2008). Two projects were initiated by the 24/7 team: a document for the management of subcutaneous medicines delivered by syringe driver, which could be used by all nursing teams; and a standard operating procedure for administration of buccal diamorphine in the management of breakthrough pain. Both initiatives required joint working parties, which were established and led by the 24/7 team. These practice developments ensured safe care of children and enabled individuals from different sectors to work together and build robust relationships. NURSING CHILDREN AND YOUNG PEOPLE
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Table 4
Key helpful themes identified, and suggestions for improvement
Respondents Family (n=26)
Helpful (%)
Improvement (%)
20 (77)
16 (61)
Key helpful themes
Key improvement themes
Glue between professionals Safety net/lifeline Care any time Care any location Filling the gap One clear number, easy to find in emotional confusion Time spent with clients Positive personal qualities – calm, sensitive, understanding, reassuring Positive team qualities – flexible, committed
Nothing – could not think of any changes needed Geography/distance to travel Communication with all professionals Awareness among professionals Simpler language in written plans
Statutory professionals (n=53)
39 (74)
27 (51)
Co-ordination role – synchronised care End-of-life/symptom management planning 24/7 availability Filling critical gap Boundary spanning – links Support for families/ colleagues Positive personal qualities – caring, approachable, supportive, helpful Positive team qualities – responsive, available Partnership, joint working and liaison Support for neonates and their families
Nothing – could not think of any changes needed On-call medical advice needed 24/7 Greater visibility More team work/better liaison with all professionals Enhanced communication and clarity of roles Clearer expectations of what can/cannot be expected NHS core funding for 24/7 palliative care provided by community nurses Joint educational initiatives
Hospice professionals (n=60)
32 (53)
23 (38)
Co-ordination Symptom management planning Positive personal qualities – enabling, supportive, reassuring, leaders of care Positive team qualities – responsive, effective Providers of support, knowledge and expertise Boundary spanning of professional groups Enhanced continuity Enabling families Filling a gap – much needed link
Nothing – could not think of any changes needed Geography/distance from hospice locations Develop a ‘lead on call’ with others on call more locally Enhance communication processes Clarify roles Greater integration with hospice care team Address difficulties with access via call handling service Expand numbers/skills mix Ensure ability to deal with emotional impact of role
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Art & science | life-limiting conditions Strengths and limitations Key positive factors were the successful recruitment of appropriately experienced staff, the effectiveness of anticipatory care planning through the development of symptom management plans, staff support mechanisms through clinical supervision, formalised on-call funding and the ability to work across boundaries. There were a number of potential limitations. The design of the questionnaire offered anonymity but prevented analysis of non-responders, and the evaluation design was not appropriate for developing deeper understanding about qualities in teams that families perceive as effective. The principal evaluator was the lead for the service and therefore could have influenced evaluation outcome. To minimise this risk, the independent evaluator supporting the project was the link for families and professionals, and inputted and analysed all data with the project administrator.
Conclusion Using a network approach, 24/7 nursing for children with palliative care needs can be delivered effectively and is valued by families and professionals. Respondents reported that the service ‘filled a critical gap’ in provision, was ‘a lifeline’ for families and ‘enabled family choices in place of care’ to be realised. The overall design of this project enabled audit and evaluation of objectives and therefore achieved its purpose. The audit of team standards demonstrated that the new service was highly valued by families and professionals, and revealed evidence of good practice as well as areas for improvement. The team of clinical nurse specialists, as families reported, ‘have been the glue between the professionals, making it easier to talk about really difficult things’. This evaluation has revealed the successful implementation of a specialist nurse-led 24/7 service for children with palliative care needs and their families.
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Conflict of interest None declared Acknowledgement Thanks to the True Colours Trust who funded this project and for the support, encouragement and enthusiasm of the East Anglia’s Children’s Hospices senior management team, the clinical nurse specialists from the True Colours symptom management team, and administrative support from Christine Blackwell and Caroline Cannon.
References Association for Children’s Palliative Care (ACT) (2009) A Guide to the Development of Children’s Palliative Care Services. Third edition. ACT, Bristol, UK.
Department of Health (2008a) End of Life Care Strategy. Promoting High Quality Care for All Adults at the End of Life. Department of Health, London.
House of Commons Select Committee (1997) Health Services for Children and Young People in the Community. Third Report: Home and School. Stationery Office, London.
Association for Children’s Palliative Care (2011) A Care Pathway to Support Extubation Within a Children’s Palliative Care Framework. ACT, Bristol, UK.
Department of Health (2008b) Better Care: Better Lives. Improving Outcomes and Experiences for Children, Young People and Their Families Living With Life-Limiting and Life-Threatening Conditions. Department of Health, London.
Hynson JL et al (2006) Research with bereaved parents: a question of how not why. Palliative Medicine. 20, 8, 805-811.
Bradford N et al (2012) Palliative care after hours: a review of a phone support service. Journal of Pediatric Oncology Nurses. 29, 3, 141-150.
Department of Health (2009) End of Life Care Strategy. Quality Markers and Measures for End of Life Care. Department of Health, London.
Brumley D et al (2006) Improving access to clinical information in after hours community palliative care. Australian Journal of Advanced Nursing. 24, 1, 27-32.
Department of Health (2011) The NHS Outcomes Framework. Department of Health, London.
Kendall C, Jeffrey D (2003) Out-of-hours specialist palliative care provision in an oncology centre: is it worthwhile? Palliative Medicine. 17, 5, 461-464. Maynard L (2009) Children’s Palliative Care Commissioning and Service Provision in NHS Cambridgeshire Report. NHS Cambridgeshire, Cambridge, UK.
Carter B et al (2009) Community Children’s Nursing in England. An Appreciative Review of CCNs in England. Royal College of Nursing, London.
Fergus CJY et al ( 2010) Assessing and improving out-of-hours palliative care in a deprived community: a rapid appraisal study. Palliative Medicine. 24, 5, 493-500.
Maynard L (2012) An Evaluation of an Innovative Service Approach to the Provision of 24/7 Care and Support in Children’s Palliative Care. Unpublished MSc thesis, London South Bank University, London.
Craft A, Killen S (2007) Palliative Care Services for Children and Young People in England: An Independent Review. Department of Health, London.
Frost N, Robinson M (2007) Joining up children’s services: safeguarding children in multidisciplinary teams. Child Abuse Review. 16, 3, 184-199.
Neilson S et al (2010) Exploring the experiences of community-based children’s nurses providing palliative care. Paediatric Nursing. 22, 3, 31-36.
Department of Health (2007) Palliative Care Statistics for Children and Young Adults. Department of Health, London.
Hickey J (2008) Integrating health and social care service. Nursing Management. 15, 8, 20-24.
Northouse P (2010) Leadership: Theory and Practice. Fifth edition. Sage, Thousand Oaks CA.
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Office for National Statistics (2011) Mid-2010 Population Estimate: Quinary Age Groups for Local Authorities in the United Kingdom; Estimated Resident Population. www.ons.gov.uk/ ons/rel/sape/soa-mid-year-pop-est-engl-walesexp/mid-2010-release/index.html Parker G et al (2011a) Evaluating models of care closer to home for children and young people who are ill. Final report. NIHR Service Delivery and Organisation Programme, London. Sharkey K et al (2010) Clinician gate-keeping in clinical research is not ethically defensible: an analysis. Journal of Medical Ethics. 36, 6, 363-366. Taubert M, Nelson A (2010) ‘Oh God, not a palliative’: out-of-hours general practitioners within the domain of palliative care. Palliative Medicine. 24, 5, 501-509. Vickers D et al (2011) Putting the Child and Family First: Developing a Managed Clinical Network for Children’s Palliative Care in the East of England. Poster Presentation Royal College of Paediatrics and Child Health, Spring Meeting, University of Warwick, UK.
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Innovative approach to providing 24/7 palliative care for children Linda Maynard and Deborah Lynn give an account of a service that filled a critical gap in provision and empowered families to make choices about care Correspondence [email protected] Linda Maynard is a nurse consultant Deborah Lynn is a clinical nurse specialist Both at East Anglia’s Children’s Hospices Date of submission August 27 2013 Date of acceptance January 15 2014 Peer review This article has been subject to open peer review and checked using antiplagiarism software Author guidelines ncyp.rcnpublishing.com
Abstract This study outlines an innovative, English hospicebased service that provides 24/7 care for children with life-limiting conditions and their families. Operational objectives were: symptom management; open access to families and professionals; choice in place of care and of death; and collaboration to develop shared pathways and management plans. Service standards were audited through questionnaires completed by professionals and families. Findings demonstrated that the nursing team filled a critical gap and met its pre-set standards. Keys to success were: having the right level and mix of specialist and advanced skills; funded on-call arrangements; anticipatory planning; symptom management plans; and clinical supervision. Further recommendations were to develop a multi-agency workforce strategy, and to increase capacity in the children’s sector to undertake academic research measuring the impacts of interventions. Keywords Children’s hospice, end-of-life care, paediatric palliative care, paediatric symptom management, 24/7 THE SOCIO-POLITICAL agenda and financial climate in England are urgent drivers for change in the management and delivery of health services (Department of Health (DH) 2011). There is a need to find different ways of providing support closer to home, reducing costs and standardising care pathways to reduce variation, while responding to choice and improving clinical outcomes. In light of growing evidence of gaps in provision, the children’s palliative care (CPC) sector is challenged to provide
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support to children 24 hours a day, seven days a week (24/7) (Association for Children’s Palliative Care (ACT) 2011). This article summarises the findings of a larger study (Maynard 2012) and evaluates the effectiveness of delivering 24/7 children’s palliative care across a network spanning four counties in one English Strategic Clinical Network, hosted by a children’s hospice service. The evaluation, undertaken after 18 months of service delivery, analysed feedback from health professionals, hospice care professionals and families.
Literature review The ‘gold standard’ principles for children are the nationally recognised ACT standards, which have guided the development and delivery of children’s palliative care over the past ten years (ACT 2009). Embedded in these standards is the principle that children and their families have a right to expect 24-hour access to symptom control including access to medication and suitably qualified and experienced practitioners. Despite many national reviews and policy guidance that have recommended provision of 24/7 access to clinical expertise in the home (House of Commons Select Committee 1997, DH 2007, 2009), significant gaps remain in services that should provide local nursing support at any time of the day or night. Service specifications must recognise that need is not regulated by office hours (Parker et al 2011). Children’s community nursing teams (CCNs) are the bedrock of care for children with life-limiting conditions and are best placed to support them at home 24/7 (Craft and Killen 2007). However, almost half of CCN services surveyed by Parker et al (2011) were available on weekdays only, highlighting July 2014 | Volume 26 | Number 6 27
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Art & science | life-limiting conditions Table 1
Ten service delivery standards used to assess provision Family (%)
To what extent does the 24/7 team provide
Not at all
To some extent
24/7 symptom management advice/support
Statutory professionals (%)
Mostly
As much as needed
1 (5)
Not at all
To some extent
Mostly
As much as needed
20 (95)
1 (2)
3 (7)
39 (91)
Specialist level of knowledge/expertise
1 (4)
2 (9)
20 (87)
2 (4)
14 (31)
30 (65)
Response to queries within four hours
1 (5)
7 (35)
12 (60)
2 (5)
11 (29)
25 (66)
Assessment of child’s physical symptoms
7 (32)
15 (68)
6 (14)
6 (14)
32 (72)
Assessment of child’s emotional symptoms*
4 (27)
11 (73)
5 (14)
3 (8)
28 (78)
Development of an appropriate management plan
3 (14)
18 (86)
3 (7)
12 (27)
29 (64)
Care and support for child wherever needed
2 (9)
20 (91)
1 (2)
8 (20)
32 (78)
1 (2)
A link between home/ hospice/hospital
1 (4)
3 (14)
18 (82)
4 (9)
10 (21)
33 (70)
Direction to other services or professionals
2 (10)
4 (20)
14 (70)
1 (2)
11 (26)
30 (72)
Advocacy for child
1 (5)
2 (11)
16 (84)
4 (10)
6 (15)
29 (73)
1 (2)
*Comparison between statutory and hospice professional groups was significant: U=629; P=.045; r=.22
the significant gap between strategic rhetoric and service reality. ‘Out of hours’ (OOH) provision of health services is an important element of the adult end-of-life care strategy and has been reviewed extensively (Brumley et al 2006, Fergus et al 2010, Taubert and Nelson 2010). All reviewers note challenges related to: Continuity of care. Sharing of clinical information between sectors. Inadequately staffed rotas. Lack of clarity about role boundaries. Anxiety related to controlled drugs in the home. Reduced access to drugs and equipment. Isolation when working OOH shifts. Access to appropriate medical advice. Further research has been recommended on how weekend working affects weekday cover and whether telephone advice is sufficient or home visits are necessary (Kendall and Jeffrey 2003). Recommendations have included: identifying clear funding for on-call work (Neilson et al 2010); use of 28 July 2014 | Volume 26 | Number 6
patient-held records (Fergus et al 2010); ensuring effective management of lone working; and making clinical supervision available (Neilson et al 2010, Taubert and Nelson 2010).
Aims The vision for this new service was to ensure that all children with a palliative care diagnosis had 24-hour access to high quality symptom management. Service objectives were also to offer children and families location choices, to work in partnership with statutory services and, for the specialist nursing team, to act as a catalyst for improvement, learning and development and to establish adequate supervision and debriefing.
The service The consultant nurse-led service was delivered across an area of approximately 5,125 square miles, with a total population of 2.8 million including 690,000 children aged under 19 years (Office for NURSING CHILDREN AND YOUNG PEOPLE
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Hospice professionals (%) Not at all
1 (2)
To some extent
Mostly
Combined (%) As much as needed
Not at all
To some extent
Mostly
As much as needed
9 (16)
47 (84)
1 (1)
13 (11)
106 (88)
1 (2)
18 (31)
39 (67)
4 (3)
34 (27)
89 (70)
1 (2)
15 (31)
33 (67)
4 (4)
33 (31)
70 (65)
10 (19)
42 (81)
6 (5)
23 (20)
89 (75)
5 (11)
17 (38)
23 (51)
10 (10)
24 (25)
62 (65)
3 (5)
11 (20)
41 (73)
6 (5)
26 (21)
88 (72)
2 (4)
14 (26)
38 (70)
3 (3)
24 (21)
90 (77)
12 (21)
45 (79)
5 (4)
25 (20)
96 (76)
14 (25)
42 (75)
3 (3)
29 (25)
86 (73)
7 (14)
42 (84)
6 (6)
15 (14)
87 (80)
1 (2)
National Statistics 2011). The service provided 24/7 symptom management advice and hands-on support for children and young people at any stage of palliative care, including at the end of life. The team consisted of five clinical nurse specialists (CNSs) in children’s palliative care, employed by the children’s hospice service, who had advanced nursing skills and a range of previous experience across hospice, community and acute sectors. The nurse consultant managed the service and the CNSs and was the principal evaluator. An administrator and an independent evaluation assistant were recruited to support the project. Medical support by a lead paediatrician was available to the CNSs and specialist palliative care support was provided by one part-time CPC consultant and four paediatricians with a specialist interest (postgraduate qualification in palliative care). The CNSs spanned organisational boundaries, working across the range of settings (hospice, home, community and acute), with honorary contracts NURSING CHILDREN AND YOUNG PEOPLE
2 (2)
1 (1)
from local statutory services to integrate this way of working in a multi-agency ‘team around the child’. Access to the service was through referral by professional or family members or via a care pathway (oncology and neonatal clients). Nursing was delivered Monday to Friday, 8am-6pm, with an on-call system at night and weekends. Families and professionals were given one telephone number for contact, day or night. Using an established GP OOH call-handling organisation to manage calls between 6pm and 8am (rather than, for example, pager or answerphone) reduced risk of equipment failure or error, enabled families to feel reassured that their call was being actively dealt with and reduced stress for CNSs.
Methods Audit methodology was used to assess provision against ten service delivery standards (Table 1). Seven questions were devised by the authors to assess usefulness of and satisfaction with elements of the service specification, and a further question July 2014 | Volume 26 | Number 6 29
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Art & science | life-limiting conditions Table 2
Usefulness of key elements of service specification Family (%)
How useful have you found:
Not at all
External professionals (%)
Somewhat
Mostly
Very
Not at all
1 (6)
2 (11)
15 (83)
1 (3)
Practical care given by the team
2 (11)
16 (89)
Support/advice given by the team*
2 (9)
20 (91)
Out-of-hours call-handling service†, ‡
1 (6)
17 (94)
SMP-written by the lead consultant or the team
Somewhat
Mostly
Very
2 (5)
7 (18)
28 (74)
1 (2)
2 (4)
7 (15)
38 (79)
1 (2)
3 (6)
11 (23)
33 (69)
1 (3)
7 (19)
28 (78)
SMP = symptom management plan. *Comparison between family and statutory professional groups was significant: U=407; P=.041; r=.24 †Comparison between family and hospice professional groups was significant: U=271.5; P=.01; r=.32 ‡Comparison across all three groups was significant: H=7.896; P=.019; df=2
Table 3
Levels of satisfaction with service Family (%)
Team qualities/overall satisfaction
Not at all
Somewhat
Mostly
External professionals (%) Very
Not at all
Somewhat
Mostly
Very
1 (2)
4 (8)
8 (17)
35 (73)
3 (13)
20 (87)
How reliable is the team?
3 (13)
20 (87)
1 (2)
7 (15)
39 (83)
How flexible is the team?
3 (14)
18 (86)
2 (5)
8 (19)
32 (76)
How satisfied are you with the service provided by the team?
1 (4)
22 (96)
4 (8)
6 (12)
38 (78)
How responsive is the team in meeting the child’s/family’s needs?
elicited views on satisfaction with the service overall. Participants were required to indicate the extent to which they agreed or disagreed with statements. Two open-ended questions were designed to elicit information on perceived benefits, challenges and ideas for improvement. Ethical considerations Ethical principles were promoted throughout all stages of the evaluation to safeguard the anonymity and confidentiality of all participants. Participants could withdraw from the evaluation process at any time without their care or any future care being affected in any way. Ethical approval was obtained from the ethics committee of the Faculty of Health and Social Care, London South Bank University. All families who used the service for nine months between April 2011 and January 2012 were included. Bereavement was not an exclusion criterion but consideration was given to the timing of the 30 July 2014 | Volume 26 | Number 6
1 (2)
initial approach (Hynson et al 2006). The sampling frame of professionals consisted of all statutory (69 medical practitioners and 60 nurses – acute, community and CNSs) and hospice professionals (121 from the hospice multidisciplinary care team) who had contact with the 24/7 team during the same period. No professionals other than the CNSs worked across all sectors. Quantitative data from the structured elements of questionnaires from all stakeholders were managed by the principal evaluator using SPSS version 19. Basic descriptive statistics were generated to illustrate responses, the Mann-Whitney U-test was used to compare stakeholder responses, and Kruskal-Wallis oneway analysis of variance (the H test) compared data for all three groups so that valid percentages were generated. Missing data were identified and percentages were estimated. Qualitative data from the two open-ended questions were transcribed verbatim by the project NURSING CHILDREN AND YOUNG PEOPLE
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Hospice professionals (%) Not at all
Somewhat
Combined (%)
Mostly
Very
Not at all
Somewhat
Mostly
6 (12)
46 (88)
1 (1)
3 (3)
15 (14)
89 (82)
1 (2)
11 (20)
43 (78)
1 (1)
3 (3)
20 (17)
97 (80)
1 (2)
13 (23)
43 (75)
1 (1)
4 (3)
16 (21)
96 (76)
6 (13)
11 (25)
28 (62)
7 (7)
19 (19)
73 (74)
Hospice professionals (%) Not at all
Somewhat
Very
Combined (%)
Mostly
Very
Not at all
Somewhat
Mostly
Very
9 (17)
45 (83)
1 (1)
4 (3)
20 (16)
100 (80)
8 (15)
47 (86)
1 (1)
18 (14)
106 (85)
1 (2)
16 (28)
40 (70)
3 (3)
27 (23)
90 (75)
2 (3)
8 (14)
48 (83)
6 (6)
15 (12)
108 (83)
administrator into Microsoft Word 2007. Data were analysed thematically using a framework approach where text was summarised into a matrix and arranged by categories and participants. Thematic analysis was undertaken independently by the principal evaluator and the evaluation assistant, and discussion helped to clarify and describe the coded patterns among the data.
Findings A total of 298 questionnaires were distributed and 139 returned, yielding an overall response rate of 47% (families n=26 (54%); hospice professionals n=60 (50%); statutory professionals n=53 (41%)). Table 1 shows that access to 24/7 symptom management advice and support was highly valued, with most respondents (88%) reporting as much provision as was needed or wanted. Ten per cent of respondents to assessment of a child’s emotional symptoms reported that this was provided to some extent only. NURSING CHILDREN AND YOUNG PEOPLE
1 (1)
Table 2 shows that, with the exception of two items (‘response to telephone/email queries within 4 hours’ and ‘assessment of child’s emotional symptoms’), all items scored highly, with 75% of respondents indicating top scores in all categories. Table 3 reveals that extremely high levels of satisfaction were reported (from 108 participants, 83%) and 75% or more of respondents rated the team extremely responsive, reliable and flexible. Comparing families and external professionals, data revealed that there was significant difference in the item ‘usefulness of support and advice by the team’ (U=407; P=0.041; r=0.24). Analysis of the OOH call handling service item showed significant difference between family and hospice professional responses (U=271.5; P=-0.01; r=0.32) and between the responses of all three groups (H=7.896; P=0.019; df=2). Figures in Tables 1-3 may not total 100% due to rounding. July 2014 | Volume 26 | Number 6 31
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Art & science | life-limiting conditions Qualitative data were provided by all three stakeholder groups (Table 4). All identified similar beneficial areas such as 24/7 availability, care in any location and that the team had filled a gap in service provision. Only families articulated the benefit of the team having time to spend with them, whereas the benefits of symptom management planning for end-of-life care, and support for colleagues and families, were common to both professional groups. Suggestions were made for improving access to the team and promptness of replies via the call-handling service, and the need for enhanced communication and liaison with statutory services. Hospice professionals recommended increasing integration through joint working on assessments and development of symptom management plans. Families suggested that jargon-free language in written care plans would be helpful. A small proportion (2) of statutory professionals proposed that 24/7 nursing services in the community should be core-funded by the NHS rather than being provided by the voluntary sector.
Discussion The majority (88%) of respondents thought the team provided as much 24/7 symptom management advice and support as was needed. A minority of respondents (10%) commented that assessment of a child’s emotional symptoms was met to some extent only, and this reflected the focus on physical symptoms in written management plans. Practical components of the service were also rated highly, with 75% of respondents indicating that symptom management plans and practical support/advice were very useful. These items correlated well with the four categories of calls suggested by Bradford et al (2012): communication, practical issues, symptom management and emotional support. This affirms the composition of the core specification of this service and reinforces the benefit of a holistic approach. Team qualities such as responsiveness, flexibility and reliability were reported in the literature as attributes that are valued by families (Carter et al 2009) and recommended by policy and practice guidance (DH 2008a, 2008b, ACT 2009). All stakeholder groups rated these qualities very highly in the team, although it could be argued that feedback gathered in this way provides a superficial view, because it does not develop deeper understanding of the meaning of these qualities as they relate to 24/7 children’s palliative care services. 32 July 2014 | Volume 26 | Number 6
In addition, fully independent evaluation would have reduced the potential for bias from service users wishing to please. A high level of satisfaction overall was reported. Although the majority of professionals welcomed this service development, professional gate-keeping was experienced by the team when engaging with some statutory organisations (Sharkey et al 2010). The view that 24/7 charitable services should only enhance NHS services is an outdated one. The hospice sector has a clear role in CPC and is a true partner agency in many networks. As a low-volume specialty, CPC is best developed by networking across a large geographical area, co-ordinating resources and making better use of the skills of paediatricians with special expertise (Vickers et al 2011), community children’s nursing teams and children’s hospice nurses (Carter et al 2009, Parker et al 2011). Vickers et al (2011) further argued that some hospice services, with cross-boundary catchment areas and good relationships with commissioners, are well placed to encourage developments such as the 24/7 team, as they are unconstrained by statutory limitations. However, some children’s hospice services suffer from isolation and access problems, with NHS professionals viewing them as respite care providers and as limited in terms of providing effective symptom control across the 24-hour period (Maynard 2009). Professional roles were not well described in the CPC literature reviewed, but evidence from the adult health and social care sector identified a number of barriers to interprofessional working – for example, lack of ability to communicate clear vision (Northouse 2010) and lack of respect for professional diversity (Frost and Robinson 2007). The introduction of joint protocols and documentation are strategies that can aid integration of new teams (Frost and Robinson 2007, Hickey 2008). Two projects were initiated by the 24/7 team: a document for the management of subcutaneous medicines delivered by syringe driver, which could be used by all nursing teams; and a standard operating procedure for administration of buccal diamorphine in the management of breakthrough pain. Both initiatives required joint working parties, which were established and led by the 24/7 team. These practice developments ensured safe care of children and enabled individuals from different sectors to work together and build robust relationships. NURSING CHILDREN AND YOUNG PEOPLE
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Table 4
Key helpful themes identified, and suggestions for improvement
Respondents Family (n=26)
Helpful (%)
Improvement (%)
20 (77)
16 (61)
Key helpful themes
Key improvement themes
Glue between professionals Safety net/lifeline Care any time Care any location Filling the gap One clear number, easy to find in emotional confusion Time spent with clients Positive personal qualities – calm, sensitive, understanding, reassuring Positive team qualities – flexible, committed
Nothing – could not think of any changes needed Geography/distance to travel Communication with all professionals Awareness among professionals Simpler language in written plans
Statutory professionals (n=53)
39 (74)
27 (51)
Co-ordination role – synchronised care End-of-life/symptom management planning 24/7 availability Filling critical gap Boundary spanning – links Support for families/ colleagues Positive personal qualities – caring, approachable, supportive, helpful Positive team qualities – responsive, available Partnership, joint working and liaison Support for neonates and their families
Nothing – could not think of any changes needed On-call medical advice needed 24/7 Greater visibility More team work/better liaison with all professionals Enhanced communication and clarity of roles Clearer expectations of what can/cannot be expected NHS core funding for 24/7 palliative care provided by community nurses Joint educational initiatives
Hospice professionals (n=60)
32 (53)
23 (38)
Co-ordination Symptom management planning Positive personal qualities – enabling, supportive, reassuring, leaders of care Positive team qualities – responsive, effective Providers of support, knowledge and expertise Boundary spanning of professional groups Enhanced continuity Enabling families Filling a gap – much needed link
Nothing – could not think of any changes needed Geography/distance from hospice locations Develop a ‘lead on call’ with others on call more locally Enhance communication processes Clarify roles Greater integration with hospice care team Address difficulties with access via call handling service Expand numbers/skills mix Ensure ability to deal with emotional impact of role
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Art & science | life-limiting conditions Strengths and limitations Key positive factors were the successful recruitment of appropriately experienced staff, the effectiveness of anticipatory care planning through the development of symptom management plans, staff support mechanisms through clinical supervision, formalised on-call funding and the ability to work across boundaries. There were a number of potential limitations. The design of the questionnaire offered anonymity but prevented analysis of non-responders, and the evaluation design was not appropriate for developing deeper understanding about qualities in teams that families perceive as effective. The principal evaluator was the lead for the service and therefore could have influenced evaluation outcome. To minimise this risk, the independent evaluator supporting the project was the link for families and professionals, and inputted and analysed all data with the project administrator.
Conclusion Using a network approach, 24/7 nursing for children with palliative care needs can be delivered effectively and is valued by families and professionals. Respondents reported that the service ‘filled a critical gap’ in provision, was ‘a lifeline’ for families and ‘enabled family choices in place of care’ to be realised. The overall design of this project enabled audit and evaluation of objectives and therefore achieved its purpose. The audit of team standards demonstrated that the new service was highly valued by families and professionals, and revealed evidence of good practice as well as areas for improvement. The team of clinical nurse specialists, as families reported, ‘have been the glue between the professionals, making it easier to talk about really difficult things’. This evaluation has revealed the successful implementation of a specialist nurse-led 24/7 service for children with palliative care needs and their families.
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Conflict of interest None declared Acknowledgement Thanks to the True Colours Trust who funded this project and for the support, encouragement and enthusiasm of the East Anglia’s Children’s Hospices senior management team, the clinical nurse specialists from the True Colours symptom management team, and administrative support from Christine Blackwell and Caroline Cannon.
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Carter B et al (2009) Community Children’s Nursing in England. An Appreciative Review of CCNs in England. Royal College of Nursing, London.
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Maynard L (2012) An Evaluation of an Innovative Service Approach to the Provision of 24/7 Care and Support in Children’s Palliative Care. Unpublished MSc thesis, London South Bank University, London.
Craft A, Killen S (2007) Palliative Care Services for Children and Young People in England: An Independent Review. Department of Health, London.
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Northouse P (2010) Leadership: Theory and Practice. Fifth edition. Sage, Thousand Oaks CA.
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Office for National Statistics (2011) Mid-2010 Population Estimate: Quinary Age Groups for Local Authorities in the United Kingdom; Estimated Resident Population. www.ons.gov.uk/ ons/rel/sape/soa-mid-year-pop-est-engl-walesexp/mid-2010-release/index.html Parker G et al (2011a) Evaluating models of care closer to home for children and young people who are ill. Final report. NIHR Service Delivery and Organisation Programme, London. Sharkey K et al (2010) Clinician gate-keeping in clinical research is not ethically defensible: an analysis. Journal of Medical Ethics. 36, 6, 363-366. Taubert M, Nelson A (2010) ‘Oh God, not a palliative’: out-of-hours general practitioners within the domain of palliative care. Palliative Medicine. 24, 5, 501-509. Vickers D et al (2011) Putting the Child and Family First: Developing a Managed Clinical Network for Children’s Palliative Care in the East of England. Poster Presentation Royal College of Paediatrics and Child Health, Spring Meeting, University of Warwick, UK.
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