Student Nurse

Caring for the Ventilated Child in the Community


Introduction

The purpose of this essay is to examine 3 issues relating to community care provision for children aged 0-16 years receiving home ventilation and whom reside in the Glasgow area. Issue 1 shall focus on the impact that caring for a ventilator dependant child has on the family. The social, emotional and financial aspects shall be examined and also what support there is in the community for families. Issue 2 will focus on the various types of respite care that is offered to children and families within the Glasgow area. Issue 3 shall examine the children's community nursing service and how this may benefit the child and family.

The importance of permitting the family unit to remain intact was emphasised by the Platt Report (1959) and Court Report (1976). The treatment of children at home avoids many of the problems associated with separation from parents and other family members (MacCarthy et al 1962). This is further supported in the Audit Commission Report - Children First (1993) which concluded that there is clean scope for moving children from hospital into the community.

Advances in medical technology and health care have improved the outcomes for may children with congenital abnormalities, chronic illness, and other conditions. A direct consequence of this as noted by Kirk (1999) is that many children are now dependant on the technology that has ensured their survival. Boosfeld and O'Toole (2000) explain that children who are dependant on mechanical ventilation are prime examples of how technology has advanced. The neonatal and infant mortality rates have continued to show a downward trend and in 2000 was 3.3 per 1000 births. The Glasgow City Joint Strategy on Impact of Disability on Children, Young People and their Families (2002-2004) also revealed that children receiving home ventilation has increased from 1 in 1989 to 14 in 2001 and it is anticipated that this figure will be set to rise.

Issue 1 - Impact on Family

Jardine et al (1999) defined a ventilated-dependant child as "any child when medically stable requiring a mechanical aid for breathing after an acknowledged failure to wean, or a slow wean 3 months after insituation of ventilation".

Studies by Clarke (1995) and Noyes et al (1999) suggests that home care of the ventilator dependant child brings stress to the whole family with an associated burden of care. As a result, the family makes personal sacrifices with caring for the ventilated child at home. These can be perceived as costs of caring to siblings and parents and fall into three main categories: financial, emotional and social.

Financial Costs

Research carried out by Dobson and Middleton (1998) estimated that the average cost of bringing up a child who has a disability was three times that required to bring up a child without a disability. The research estimated that the minimum costs of bringing up a child with a disability was £7355 per annum compared to £2100 per annum for a child without a disability. The financial cost of caring for a ventilated child is influenced by loss of earnings (Stutts 1994). As woman are the main caregivers, it is this income that is most likely to be sacrificed. Jennings (1992) conducted a study of unemployment in families with a technology dependant child. The study found that 25% of fathers with a child with a tracheostomy were unemployed. However it is difficult to draw conclusions from this study as it only accounts for 2 fathers and there were no mention of mothers' employment status and no discussion of how unemployment can impact the family. Bakewell-Sachs and Porth (1995) suggest that there are also so called 'hidden' costs that are often ignored such as caregiving, telephone, electricity and transport expenses.

Emotional Costs

There is extensive research findings of emotional costs incurred by families caring for a ventilated child with stress, depression and sleep deprivation as the most common problems, however the majority of this research is American based (Andrews and Neilson 1998, Wegener and Aday 1989). These emotional difficulties affect marital relationships, family health and siblings behaviour (Jennings 1990, Clarke 1995).

Stutts (1994) describes how stress manifests itself in many different ways and uses the term 'chronic sorrow' to describe the feelings of parents. It takes into account the feelings of guilt, anger, stress, anxiety and sadness that parents experience. Jennings (1990) suggests that parents often feel anxious about performing unpleasant procedures such as suctioning a tracheostomy on their child. A further study by Jennings (1992) investigated the coping mechanisms used by mothers caring for a technology dependant child and described a range of emotional difficulties that mothers experienced with depression as a common feeling.

Social costs and Family dynamics

Families with a ventilated child are prone to social isolation (Kirk 1999). A study by Wheeler and Lewis (1993) found that families of children with complex medical needs have difficulty in finding appropriate community support networks and services. The study also found that when parents do have access to services they are dissatisfied as they feel that they are poorly co-ordinated and fragmented. Family relationships in the home can also be challenging. Smith (1991) reported behavioural changes in siblings and negative sibling relations such as jealousy, resentment and rivalry.

Community Support

The Scottish Executive (2004) in conjunction with local authorities have introduced direct payments in Scotland. If a local authority decided that families caring for a child are entitled to community children's services then they can provide families with money so that the family can arrange and buy the services themselves. This gives the families freedom to chose the service that is best for their family and give them more control. The money cannot be spent on anything other than community care services. A good example of a way to spend the money is to purchase respite time. The family can buy occasional short breaks if the local authority has deemed them as needing it. The Family Fund (2004) are able to supply grants to help families. The grants can be used for holidays or leisure activities, washing machines, beds and bedding, hospital visiting expenses and telephone and play equipment.

Issue 2 - Respite Care

Treneman et al (1997) describes respite care as shared care of a person with difficulties/disabilities either at home or in a residential setting, in order to give the family a break from routine care taking. Over recent years there has been an improved understanding of the of the burden of care and the pressures faced by the family with a ventilated child (Murphy 2001). The Joseph Rowntree Foundation (1999) carried out research that suggests that families want a spectrum of respite services offering flexibility and continuity of care. For some families the concept of respite care signifies an inability to cope with caring for their child (Farrell 1996). Parents are also concerned with the quality of respite care (The Joseph Rowntree Foundation 1999).

Children's Hospice

Children's hospices are a growing number in the UK. At present there are a total of 18 hospices in the UK with another 11 being planned (The Joseph Rowntree Foundation 1999). In Scotland at present there is only one - Rachel House which is run by The Children's Hospice Association Scotland (CHAS), however there is another hospice - Robin House which is currently under development. In 1999 The Joseph Rowntree Foundation carried out research that looked at children's hospices across the whole of the UK. The findings showed that most children's hospices accommodate a wide range of children from young babies to young adults. The amount of care the hospices offered varied, with newer hospices able to offer more stays than older, more heavier used ones. On average children were accommodated for 20 days a year, however there were some examples of children receiving more than this. There were 3 main reasons why families used hospice care. A positive recommendation by a professional or another family, poor experience of, or inadequate support from, other short term care services and lack of suitable alternative provision. The National Council for Hospice and Specialist Palliative Care Services (1996) lay down 5 basic principles that form a model of palliative care. These are a focus on good quality of life remaining for the child, a whole person approach involving family members, a family centered approach, flexibility giving the family a choice to receive care in a way to best meet their needs and effective communication.

The hospice team works in partnership with other professionals giving support and help to the family both in the hospice and in their own home. The family centered approach in this sphere of nursing advocates that the needs of all the family are addressed (Andrews and Hood 2003). This is further echoed by Kenyan and Barnett (2001) who writes that a family centered philosophy establishes a partnership with the child and family receiving care in order to promote the maintenance of the family functioning as a unit.

However due to the fact that Rachel House in Scotland covers such a wide area there are strict rules for accepting a child for respite. Children must be under 18 at time of referral and have a qualifying condition. This includes any condition in which the child is not expected to survive into childhood. Although Rachel house offers families 21 days respite each year it is unclear whether a ventilated child would qualify, as his/her condition would have to be life threatening.

Home Care

Kirk (1999) suggests that families with ventilated children prefer home based care to hospice and hospital care. The main reasons being increased flexibility, the opportunity for the child to remain in a familiar environment and avoiding the need to transport large amounts of equipment. In Glasgow home based respite care is organised by Social Work Services and the local children's hospital. The scheme known as 'Home is where the Help is' provides families with a range of home based family support services. The service employs staff to provide support in the home or support to children to access local resources/activities. Care is provided by a limited number of carers who know the child and family which enables a relationship of trust to develop, carers can be non-professional as long as they are appropriately trained. However as Linter (2000) noted the recruitment and retention of staff can be challenging as the role can be demanding and on-going support is required.

When a child is referred to the home care team the support needs of the child and family are assessed by staff ad strategies are implemented to meet those needs (Andrews and Hood 2003).

Shared Care and Shared Care Plus

Shared care is family based respite care for children affected by disability who normally live in the community with their families. Shared carers take children into their homes for one weekend a month and possibly for a longer spell during the year. The length of stays and frequency of visits are flexible and are organised to suit both the family and the shared carers.

Shared care plus is a family based respite care scheme for children with more complex needs. Professional shared carers are linked to 4 children, offering each child around 42 days care each year. Carers usually look after the children the carers own homes, but are also able to be flexible offering care in the child's home or supporting the parents if the child is in hospital. The aim of such schemes is to facilitate the development of long term relationships between families. Morris (1998) believes that schemes such as these can also increase local community links for children with complex needs and their families. Prewett (2000) notes that most short break carers for children with complex needs have had personal or professional experience of disability which makes them more willing to take on this challenge. However Beresford (1994) writes that some parents find that using this type of service can increase their feelings of guilt because another family can cope when they are unable to. Beresford (1994) also finds the benefit that this service has for siblings as parents are able to spend more time with them, which for some families is the main reason for using respite care services.

Voluntary Services

Capability Scotland (2004) is leading the way in respite care by providing enjoyable breaks in secure environments. Families can relax in the knowledge that they have no need to worry as their children are being well looked after and having fun. The Glasgow Children's Project is funded by Capability Scotland (2004) and provides a range of flexible home and day care services to support children with disabilities within their own communities which is an alternative to residential care. NCH action for Children (2004) operate a shared care service which allows disabled children to enjoy the benefits of specialist care whilst their family has the chance to rest and relax. NCH (2004) also operate specialist residential units and family link care. The respite packages offered enable children and their families to have a planned break away from each other. From a few hours to a few days the service gives parents and carers time to relax. The Glasgow Joint Strategy (2002-2004) aims to increase resource allocations and expand the shared care schemes. Its main aim is to establish a comprehensive range of community based support services.

Issue 3 - Community Children's Nurse/Service Provision

The right of the child to be cared for at home, wherever possible was first identified in The Platt Report in 1959. A developing awareness that this service should be provided by a children's nurse within a family centered model of care has led to recognition of the need for dedicated Children's Community Nursing (CCN) teams (Audit Commission 1993).

Service Provision

The welfare of children in hospital -The Platt Report (1959) strongly recommended that treatment for children's health needs should be available in the community and that hospitalisation of children should be avoided unless entirely necessary. The House of commons health committee (1997) recommends that all children requiring nursing interventions should have easy access to children's community nursing services staffed by qualified children's nurses, the service should also be available 24 hours a day, 7 days a week and that every GP should have access to a named community children's nurse. Before 1999 a community nursing service was limited to certain areas of Scotland but it has expanded in recent years. 14 of the 15 Scottish health boards now have a children's community nursing service (Moss and Bond 2002).

Across the UK around 10 percent of children have access to a 24 hour CCN service (House of Commons Health Committee 1997). The aims and expected benefits of the service are to reduce length of hospital stays, reduce hospital admissions and promote child and family satisfaction (Coley and Partridge 2002). The CCN team in the Greater Glasgow area accepts children from 0-16 years of age and operates Monday - Saturday 0900-1700 hours.

The aims of the service are to provide a nursing service for families who have children with a wide variety of health problems, provide care from registered children's nurses, provide short and long term care at home or other community setting, prevent admission to hospital or shortening a hospital stay where possible, teaching and supporting children and families so that they can become as independent as possible, offering children and families incorporating health promotion, by acting as an interface between community and hospital services through effective communication, and by teaching and supporting other health professionals in aspects of care for children, including children with special care needs.

All the children referred to the service live within the Greater Glasgow Health Board area. The CCN team are divided into two areas and link across LHCC's and child development centres. Team A cover the west, north and east of the city and Team B cover the southside area. A child can be referred to the service in various ways, either via a health professional working in the hospital or community setting, via social and educational services, from a parent or carer or from charity and voluntary services.

Voluntary Services

A REACT nurse also works in conjunction with the CCN team. REACT provides practical help for children at home suffering from life limiting illnesses. Their aim is to give assistance as quickly and as fully as possible. Since 1991 REACT has helped the families of over 700 children in Scotland (REACT 2004). REACT also has spent in excess of £300,000 in Scotland, over £16,000 of this has been in the provision of medical or domestic items to families in Scotland with children who suffer from a variety of life limiting conditions. REACT also maintains close links with the Children's Hospice Association Scotland (REACT 2004). REACT also provide respite care in the form of holidays in the west coast of Scotland.

Conclusion

Despite the benefits of a community children's nursing service that have been clearly described in the literature, problems with its establishment and development still exist. Until fairly recently a community children's nursing service was virtually non-existent. The absence of a children's community nursing service often means that ventilated children either stay in hospital for prolonged periods of time or parents cope alone without any support.

In 2003 Barnardos published "Breathing Space" a report looking at community support for children with long term ventilation needs. The report aims to raise the awareness of children on long term ventilation. Barnardos is calling on for rights of children on long term ventilation should be recognised both within the hospital and home so that the impact of their condition is minimised and they have an equal opportunity to family life, to participate in their local community and participate fully in educational opportunities.


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