Chapter 3 Introduction to community
INTRODUCTION
Paediatric care today has been transformed with fewer admissions to hospital and a shorter hospital stay. The emphasis is on primary health and the delivery of healthcare in the community rather than secondary care based in the hospital (Middleton 2000). Medical advances have seen an increase in the numbers of babies born prematurely and surviving with increasing levels of needs. Nurses in the community have been identified as fundamental to increasing effectiveness and improving patient satisfaction (Scottish Executive 2005). Nurses in the community also help parents of children with chronic illness by enabling, facilitating and empowering them to cope at home (Carter 2000, Olsen & Maslin-Prothero 2001) and by raising the quality of care for a range of conditions, for example eczema, incontinence problems and behavioural difficulties, which often have a low profile (Drew et al 2003).
Children with disability and technology-dependent children who need ongoing medical and nursing care are the two most common areas that require the involvement of children’s services (Teare 2008). There is evidence that highlights that the outcomes are better for the child and family when they are supported to manage their child’s illness at home (Wang & Burnard 2004). Benefits to the child and family include reduced levels of anxiety, positive improvements in the child’s physical and mental health, financial benefits and increased educational achievement. Children’s nursing in the community has a key role to play in providing the support and care needed to achieve these positive outcomes alongside the multi-agency input of social work, education and the voluntary services.
MULTIDISCIPLINARY TEAM WORKING
A joint approach to delivering care and the importance of team working is central to Every Child Matters (DfES 2003), The Children Act (2004) and the National Service Frameworks in England and Wales (DoH 2004a; Welsh Assembly Government 2005). The Children’s Plan (Department for Children, Schools and Families 2007) brings together these existing policies and aims to ensure that services are designed around the needs of the child and their family, rather than around organisations or professionals. Doyle (2008) highlights the risks of poor communication and failure of professionals working together, which can lead to duplication of care, poor management, failure to provide care, clinical risk and the family losing confidence in the services provided. A further aim of ‘The Children’s Plan’ is to remove existing professional barriers to improve access to services for children and families to enable effective multidisciplinary team working. ‘For Scotland’s Children’ (Scottish Executive 2001a) states that better integrated children’s services will ensure services are more responsive, and identifies the need to bring services together to meet the needs of individual children, young people and their families. The ‘National Service Framework for Children, Young People and Maternity Services’ (DoH 2004a) states that everyone who works with children, not just in healthcare settings, but also in schools and the wider community, will be expected to have an understanding of children’s needs.
COMMUNITY CHILDREN’S NURSING
Community children’s nurses (CCN) are registered children’s nurses with additional education in caring for children at home and their wider community (Pontin & Lewis 2008). CCN services have developed and the majority of areas throughout the UK now have a service. The Royal College of Nursing (2000) states that CCN services have been developed in response to local need and circumstances instead of being based on the most effective model of provision. Models of service delivery vary and include:
CCNs have a key role in being proactive in preventing crisis through support and early intervention and providing a holistic approach that sees each child as part of a family. The concept of the nurse offering support to the child and family is widely recognised but there is a need to define what support means. Kirk and Glendinning’s (2004) study with parents caring for their technology-dependent children defined support as three dimensional: (1) Emotional support (includes ‘being there’, easy to contact, knowing the child, listening/counselling, promoting parents’ self-confidence). (2) Instrumental or practical help (includes practical support, advocacy, ‘hands-on’ care, organising services and equipment). (3) Information (includes advice and information giving, teaching, giving feedback and sign-posting to other care agencies).
CCNs facilitate family-led packages of care and empower the parents in care partnerships (Gould 2000). The level of care and support varies to ensure that each family is confident in the care they are able to provide.
CCNs need to have the interpersonal skills to work in partnership with the family to identify their strengths and weakness, as well as capacity, willingness and ability to get involved in their child’s care. Getting to know the family in the community requires a different dynamic than nurses working in a hospital setting as the relationship develops over a longer period of time and continues on a short-term (days or weeks) or long-term (months or even years) basis. Pontin and Lewis (2008) highlight the skills that CCNs have in ‘knowing’ the family through gathering knowledge about the child, their condition, the family and resources available within the local community. A holistic view considers the child’s views, their home circumstances and quality of life as part of the decision-making process. Knowing what to ask to find out about the child and family is one aspect of ‘knowing’ but there is then the need to interpret the information, understanding its relevance and then knowing what to do next.
TRANSITION FROM HOSPITAL TO HOME
Implementing a successful transition of care from hospital to home needs careful planning. The aim of this planning is to ensure that the child’s care is continuous and the parents receive the support and education that enables them to provide safe care without undue stress. For children with complex healthcare needs, discharge planning needs to start some weeks before the child leaves hospital. Ideally the CCN will visit the family in hospital to enable them to develop a relationship and to start to discuss the practical issues of going home. The CCN can familiarise herself with the care that the child is currently receiving and can identify the resources that will be required in the home. This can be described as ‘hospital in-reach’, where the CCN takes an active role in the discharge planning process (Royal College of Nursing 2000). While the child is still in hospital, education programmes can be initiated for the child and parents, who should be encouraged to discuss any concerns that they may have so that they are able to give informed consent to the care that they are being asked to undertake. Communication between the hospital and the primary healthcare team is essential and involvement in the assessment and care planning will be a key role. The CCN is often ideally placed to act as a liaison and is able to involve the primary healthcare team at an early stage in the planning process.
When children are discharged home from hospital, any continuing hands-on care is most often provided by their parents (Thurgate & Warner 2005). Glendinning and Kirk (2000) reports on a study that aimed to look at the dynamics involved in the transfer of responsibility from professionals to parents. The findings highlighted that parents felt obliged to care for their child and this was influenced by the strong desire for their child to go home. Often there is no alternative to parents taking on the role as carer and parents in the study highlighted the lack of community services. The implications of this evidence highlight that it is essential to work in partnership with parents in planning for the child’s transition from hospital to home. Parents as carers need to feel confident and competent in the care they are providing and training needs to be tailored to their needs. The nurse has a responsibility to document any training and procedures and check competency of the carers to ensure standards are being achieved. This will include regular reviews of competences and supplying training updates as necessary. This should also demonstrate that the instruction has been understood and that the parents and carers are capable of undertaking the procedure confidently and competently, being aware of all the problems that might occur and what action to take. Families should always be given the option of handing back control if they feel that they can no longer cope.
Providing care at home for children with complex healthcare needs is demanding and often exhausting for parents and families (Wang & Burnard 2004). Respite support, now known as short breaks, can offer a break for the family and may involve a range of services including respite at home, in a respite facility or children’s hospice and through social services. A further example of respite support is shared care with other families taking on the caring role.
WORKING IN PARTNERSHIP WITH CHILDREN, YOUNG PEOPLE AND THEIR FAMILIES
Recognition of the need to listen to children’s views about health and other services has grown over the last 10 years. Key policy documents include Article 12.1 of the UN Convention on the Rights of the Child’ (1989), where it is stated that children have the right to express their views freely in matters affecting them. The Children (Scotland) Act 1995 advocates the need for professionals to listen to and take account of children’s views and Delivering a Healthy Future (Scottish Executive 2007) and Every Child Matters (DfES 2003) advocates that children should be viewed as partners in decisions involving their care and treatment.
Evidence suggests that good communication between health professionals and children results in increased understanding of illness and treatment and lower levels of stress for children (Coyne 2006). Findings from Stalker et al (2003) highlighted that young people expect the following from healthcare professionals:
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