Chapter Twenty. Community children’s nursing
Anna Sidey and David Widdas
KEY ISSUES
• The development of community children’s nursing services in the United Kingdom
• The roles and responsibilities of community children’s nurses alongside other nursing disciplines
• Family nursing as a framework for practice
• Integrated multiagency care pathways
• Transition to adult services
Introduction
Community children’s nursing remains a relatively young discipline compared with more established branches of community nursing. As such, the corporate identity of services is still emerging. This lack of a traditional foundation can facilitate more imaginative and flexible approaches to identified care needs, but it can also cause confusion and misunderstanding for stakeholders and affect collaboration with other professional groups. In order to clarify the context of the current situation, this chapter begins with a brief overview of the development of community children’s nursing services and then examines roles and responsibilities and the context of community children’s nursing, as well as family nursing, integrated care pathways and the role of the key worker, followed by transitions to adult services and current challenges and opportunities for community children’s nursing services. Case studies will be used to illustrate significant points and to challenge current thinking.
The development of community children’s nursing
The formal existence of a community children’s nursing service was first recorded in 1949 (Gillet 1954). While the development of services has been consistently supported in official reports and government directives since the 1950s, expansion of this provision remained slow until the early 1990s (Whiting 2005). The last decade has witnessed most growth and development in this discipline due to a number of reasons, which include:
• medical advances that have enabled infants and children to survive what were once fatal disorders
• the increased availability of medicines, therapies and technology to support associated care needs
• the government agenda that has pursued a shift from secondary care to primary care alongside a philosophy of increasing consumer expectations
• the recognition of community children’s nursing as a discrete community specialist practitioner recordable qualification (United Kingdom Central Council 1994).
However, community children’s nursing services are fragmented and anomalies continue to exist that give rise to confusion. For example, Box 20.1 illustrates ten different models of services in operation in the UK, as identified by Whiting (2005).
Box 20.1
Models of community children’s nursing services
1. Hospital-based ‘generalist’ outreach services
2. Hospital-based services comprising a number of ‘specialist’ nurses
3. Community-based teams who are not specifically aligned with a single primary care trust
4. Primary care trust-based teams
5. Ambulatory care or assessment unit and hospital-at-home services
6. Services (including respite) for children with life-limiting illnesses including community, hospital- and hospice-based services
7. Continuing care teams
8. Specialist nurses based in tertiary referral centres
9. Services based in child development/Sure Start teams
10. Community neonatal services
Further to this, by 2004 in excess of 20% of UK regions did not have access to a service, with only a minimal number of existing services able to offer 24-hour access (Burr and Hughes 2005). Nationally, a 100% cover for the provision of palliative care is close to becoming a policy goal for the government and assemblies of the UK. However, a holistic, adequately staffed, nationwide community children’s nursing service remains a distant vision (Craft and Killen 2007). (Current details of primary care trusts in the UK commissioning community children’s nurses (CCNs) are available on the Royal College of Nursing website (www.rcn.org.uk).)
These variations have occurred essentially for the following reasons:
• Current standards regarding the care of sick children differ between hospital and community settings. For example, in 1991 the Department of Health stated that there should be at least two qualified children’s nurses on duty 24 hours a day in all hospital children’s departments and wards, a notion that was reinstated following the Beverley Allitt inquiry (Department of Health 1994). However, such a standard does not apply to the care of sick children in the community, despite being a recommendation following the review of children’s services by the House of Commons Health Committee (1997).
• There has been a lack of understanding and commitment by commissioning and purchasing authorities to meet the needs of sick children and their families in the community in some areas. The National Service Framework (NSF) for Children failed to provide the catalyst for commissioners to prioritize community children’s nursing services (Department of Health 2004).
• An absence of a national strategy and corporate identity for community children’s nurses continues to adversely influence professional recognition (Sidey, Widdas, 2005 and Sidey, Widdas, 2005).
Roles and responsibilities: the context of community children’s nursing
At present, community children’s nursing and the role of the CCN lacks a clear professional corporate identity, an issue not unique to this discipline. A corporate identity strengthens the culture and values of a service and provides a signpost for all staff. A stronger identity within community children’s nursing would enhance interdependent working with other care providers. In order to facilitate this, the uniqueness of the CCN’s role, alongside other nursing disciplines, needs to be established. A distinction between the titles that are often used synonymously within the literature (community children’s nurse, clinical nurse specialist, specialist outreach nurse) follows.
Community children’s nurses are registered children’s nurses with a community specialist practitioner qualification. This role can be identified with models 1, 3, 4, 5, 6, 7 and 9 of Box 20.1. Based in either an acute or community setting, the CCN facilitates nursing care for a varied, yet defined, caseload of sick children in a range of community settings. The work of the CCN has been described as having seven broad areas (Box 20.2).
Box 20.2
The work of the community children’s nurse (House of Commons Health Committee 1997)
1. Supporting the families of children with long-term nursing needs
2. Supporting children with a disability
3. Supporting families who are caring for a child during the terminal phase of his/her life
4. Neonatal and postnatal care, including the care of children with complex problems arising from prematurity and disorders presenting at birth
5. Supporting children undergoing planned surgery
6. Caring for children with acute nursing needs, which can reduce the need for and duration of hospital admission
7. Follow-up and support of children requiring emergency treatment which may assist the promotion of early discharge from hospital
A clinical nurse specialist (CNS) may work independent of, or within, a community children’s nursing team and concentrate on a disorder-specific subspecialty such as respiratory or community neonatal nursing. The CNS is a qualified children’s nurse, usually with an increased level of expertise and further education and training in the defined subspecialty but not necessarily in community nursing. This role concurs with models 2, 8 and 10 presented in Box 20.1. Miller (1995) describes the role as clinical expert, resource consultant, educator, change agent, researcher, advocate and mentor.
Conversely the specialist outreach nurse (SON) provides care from either a secondary or tertiary healthcare setting and is often a member of a specialist multiprofessional team. This role links most closely with models 2, 6, 8 and 10 (Box 20.1). The SON is a registered children’s nurse with further education and training in the specialty but not necessarily in community nursing. The philosophy underpinning practice is often one of ‘shared care’ either between primary and tertiary settings, between primary and secondary care, or between all three. This model is particularly well established in the care of children with malignant disease.
While some differences in these three roles are evident, they each aim to avoid admission to hospital, reduce the length of hospital stay and provide a high-quality, effective service (see Chapter 22 for further information on the range of nursing roles). This chapter is specifically concerned with the role and responsibilities of the CCN.
In the context of more established community nurses who work with children, such as specialist community public health nurses: health visitors (HVs) and school nurses (SNs), there are certain generic aspects that overlap with the CCN role. For example, health promotion and child protection clearly apply to the work of each of these three nurses but with varying degrees of emphasis. However, there are two distinguishing aspects to the CCN role that do not directly apply to other community nurses. First, all CCNs are registered children’s nurses and second, the main focus of their work is either to provide direct ‘hands on’ care or to facilitate and coordinate this in a range of community settings. This second component requires the CCN to be able to perform complex nursing procedures, such as changing a tracheostomy tube in a fragile baby while being observed by parents and untrained carers, and then to teach these same skills to those who may be emotionally vulnerable and lack confidence. This, therefore, demands unyielding confidence and advanced competence in teaching complex tasks to enable parents and other carers to become experts in the child’s care. Case studies 20.1 to 20.4 stimulate the reader to reflect upon the number of different health, social and voluntary personnel involved with families where children have complex health needs, highlighting some of the challenges faced by CCNs.
John is a young person of 11 years. He has had a complicated 7-year history of intractable constipation and recently had a colostomy performed as a result of this. He is reliant on oral medications. He receives support from an SON, CCN, HV and SN. The SON works within the gastroenterology team at a regional hospital in the Home Counties. She initially visited John in the children’s ward following his operation and now assesses him in a nurse-led clinic in the outpatient setting following his discharge home. Here, she will see him approximately four times per year to oversee the effectiveness of his treatment and provide the link between hospital and community provision. Following his assessment and adjustment to his treatment in the clinic, she liaises with the local team of CCNs to advise his named nurse of his continuing care needs between clinic appointments. The CCN provides regular home visits to John and his family. The aim of these visits is to assess the effectiveness of his medication and make appropriate changes according to his symptoms, to teach John and his parents how to manage the colostomy and to act as a resource to the HV and SN. The HV will eventually provide ongoing home visiting support to John and his family once they are independent in his care management and his condition stabilizes, using the CCN as a resource only. The HV will also organize a budget to provide regular supplies to the family and in the meantime, these continue to be supplied from the budget for the community children’s nursing service. The SN works with the teachers to ensure that John has the necessary equipment, resources and support in school to enable him to attend without fear of being socially isolated. Each member of the team involved in John’s care is dependent upon effective communication between all members to ensure continuity.
Questions
1. How might John’s care be configured differently?
2. With the focus on new ways of working, how might services for children in the community be delivered differently in the future?
Ways of working: family nursing
The ability of parents to negotiate their degree of involvement in their child’s home care is limited by a lack of alternatives (Kirk 2001). The dearth of community children’s nursing services in the UK means that parents are often required to learn complex skills and assume 24-hour responsibility for their child, often without help and support or respite, in order to achieve home care. This involves parents performing highly technical procedures that have previously been considered the domain of professionals, and perhaps extended nursing practice, therefore adopting a ‘neoprofessional’ role. For example, this may entail administering intravenous therapy, providing tracheostomy and ventilation support and administering parenteral feeding.
The terms most often associated with the work of CCNs are ‘partnership’ working and ‘family-centred care’ by children’s nurses skilled in child development and the recognition of the needs of the sick child. The concept of ‘family nursing’ is gaining increasing recognition in the UK for patients from all age groups (Scottish Executive 2006). Friedemann (1989) describes family nursing on three levels:
2. Interpersonal: the nurse uses communication techniques with two or more individuals to address family processes such as decision-making, limit setting and defining family roles.
3. Family system nursing: the client becomes the whole family system and nursing goals are aimed at changes in the system.
Given the role expected of parents, it is necessary for the CCN to assess how the family works together as a team in meeting the complex demands made on them as a system and to identify their unique needs. This could be reframed into identifying both their personal and ‘neoprofessional’ needs. Evidence from both CCNs and families, as the recipients of services, supports this notion. For example, research commissioned by the English National Board for Nursing, Midwifery and Health Visiting identified 17 principles of CCN practice derived from interviews with families (Procter et al 1999; Box 20.3).
Box 20.3
Guiding principles of community children’s nursing practice
1. Promoting family-centred care rather than child-centred care
2. Maintaining or improving the quality of life of the family, rather than focusing on medical needs
3. Minimizing stressful events rather than giving routinized care
4. Fostering family empowerment rather than learned helplessness/dependency on professionals’ solving abilities
5. Having an approach of partnership rather than the imposition of professional expertise
6. Appreciating the complexity of a problem rather than oversimplifying it
7. Solving or reframing problems rather than avoiding them
8. Recognizing the boundaries of one’s own expertise and knowing where to turn for appropriate help, rather than trying to solve all problems independently
9. Establishing credibility with paediatric and primary healthcare colleagues through working together openly rather than having an insular approach
10. Having a flexible, organic, responsive role, rather than a formally directed set of functions
11. Having knowledge gained through experience rather than procedures
12. Having the knowledge to anticipate and plan for future directions in the care needs of the child, rather than reacting to crisis
13. Being available (light touch) for the family when the family wants it, rather than when it is most convenient to services
14. Promoting the health of families rather than focusing solely on tertiary interventions
15. Lightening the burden through manner of approach, rather than getting caught up in the anxieties of the situation and reinforcing the burden
16. Enabling children and families to lead ordinary lives, rather than this being regarded as secondary to biomedical interventions
17. Listening and discovering rather than imposing ready-made solutions from elsewhere
These principles identify the fundamental need for the CCN to work in the context of the family as a whole and to work with the family as a unit of care. Principles such as ‘fostering family empowerment’ and ‘promoting the health of families’ relate both to family processes, using skills of ‘listening and discovering’, and to the client being the whole family system. This is further evidenced in the work of Carter (2000) whose study explored the role and skills used by CCNs caring for children with chronic illness. As a complement to the principles outlined in Box 20.3, CCNs themselves identified the need to have a deeply contextualized understanding of the child’s and family’s needs and the ability to work within an ‘individual family’s community’. This requires skilled negotiation and tremendous respect for the way families choose to live their lives (Carter 2000).
Rashider is 3 years old. She has an undiagnosed degenerative disorder that causes spastic quadriparesis and episodes of severe spasms. She is fully dependent for all activities of daily living. She has feeding problems and requires a gastrostomy tube for overnight feeds and the administration of medication. She is cared for at home by her parents, both aged 26 years, and her grandparents. She has two brothers. Imran is 6 years old and attends the local school. He suffers from severe, uncontrolled eczema. Yusuf is 4 years old and is still at home. She also has a baby sister of 3 months. Her mother is the main carer and is showing signs of stress, appearing withdrawn and tearful. Her father works long hours for a local company. At present the following services are involved in this family’s care:
| Community children’s nurse | Health visitor |
| School nurse | Geneticist |
| Pre-school counsellor | Community paediatrician |
| Consultant neurologist | Asian liaison health worker |
| General practitioner | Dermatologist |
| Independent nurse for gastrostomy services | Social worker |
Respite care services from a local voluntary agency have been offered but refused by the family.
Questions
1. From this list of professionals, who could adopt a more central role in facilitating a family nursing approach, using the three levels of family nursing as a guide?
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