VOL: 98, ISSUE: 39, PAGE NO: 38
Alison Day, MA, BSc, RGN, RSCN, RHV, is care development officer, the Association of Children's HospicesThe UK's first children's hospice, Helen House, opened in Oxford in 1982 as a result of the relationship between a child called Helen, her parents, and Mother Frances Dominica of All Saints Convent in east Oxford (Worswick, 2000). Helen needed 24-hour nursing care after surgery to remove a brain tumour. Realising that the family was under an enormous amount of stress, particularly after Helen's sister was born, Mother Frances offered to care for Helen at the convent for a weekend to give her parents a break. After several such weekends the idea of extending this type of support to other families developed. The families of children who need palliative care face overwhelming stress because of the progressive and terminal nature of their child's illness. They need care and support which is flexible and can be adapted to the child's changing needs. The specialised care offered by children's hospices acknowledges the unique nature of those needs (Gravelle, 1997).
The UK's first children's hospice, Helen House, opened in Oxford in 1982 as a result of the relationship between a child called Helen, her parents, and Mother Frances Dominica of All Saints Convent in east Oxford (Worswick, 2000). Helen needed 24-hour nursing care after surgery to remove a brain tumour. Realising that the family was under an enormous amount of stress, particularly after Helen's sister was born, Mother Frances offered to care for Helen at the convent for a weekend to give her parents a break. After several such weekends the idea of extending this type of support to other families developed. The families of children who need palliative care face overwhelming stress because of the progressive and terminal nature of their child's illness. They need care and support which is flexible and can be adapted to the child's changing needs. The specialised care offered by children's hospices acknowledges the unique nature of those needs (Gravelle, 1997).
Epidemiological studies show that about one in 1,000 children in the UK are in need of palliative care. This means that about 15,000 children aged between birth and 19 in the UK need palliative care (National Council for Hospice and Specialist Palliative Care Services et al, 2001).
There are 25 children's hospices in the UK and 13 more are planned. Children's hospices receive less than 5% of their funding from statutory sources, an issue that the Association of Children's Hospices hopes to address as part of Children's Hospice Week (September 21-28).
Children's hospices are usually small units with between eight and 10 beds that offer a wide range of services, from specialist respite and terminal care to bereavement counselling, support and group work. Some hospices provide outreach nursing care in the community to complement local community nursing services. Others offer residential nursing care as specialist respite, either planned or emergency, and terminal care.
The focus in every case is on children and their families. Each hospice has a child-centred philosophy that emphasises children as people first, with their illnesses a secondary consideration. Care is tailored to the needs of each particular child and wherever possible the child's normal home routine is followed.
In many cases the whole family stays at the hospice with the child. Some parents use the facilities to give them a break from routine household tasks and to take advantage of the support on offer in caring for their other children. Others leave their sick child at the hospice while they have a break or take siblings away on holiday. This varies widely from hospice to hospice and from family to family. Proximity to the hospice also makes a difference. Families who live close to the hospice may be more likely to leave their child in the care of hospice staff than those who live further away. Families who live near the hospice may also use day-care facilities.
Who do children's hospices cater for?
There is a misconception that children's hospices offer most of their support to children with cancer or leukaemia, but these patient groups make up only a small percentage of the children who use such facilities (Chadwick, 1999). The types of conditions that children have can be divided into three main categories: life-limiting conditions; life-threatening conditions; and potentially life-threatening disabilities (Thornes, 1990).
Life-limiting conditions may be defined as progressive, degenerative conditions such as Duchenne muscular dystrophy, spinal muscular atrophy, Batten disease, cystic fibrosis, mucopolysaccharidoses or severe chromosomal abnormalities. Many of these conditions have genetic origins and are slow to manifest. As a result families may have more than one affected child, which increases both the physical and emotional difficulties they face.
Life-threatening conditions include not only neoplastic diseases such as cancer or leukaemia but also severe cardiac abnormalities and liver disease.
The third category includes children who are so severely disabled, for example through cerebral palsy or microcephaly, that they are vulnerable to infections or complications. This group are by far the most difficult to assess in terms of eligibility because medical advances and interventions such as gastrostomy feeding have greatly improved their prognosis.
Organisation of children's palliative care services
Children's palliative care services are organised differently from those for adults (National Council for Hospice and Specialist Palliative Care Services et al, 2001). Paediatricians usually remain involved in the care of the child and work alongside palliative care services. Medical cover at hospices may be provided by a local GP surgery with a particular interest in paediatric palliative care, although this varies.
There is not always a doctor on site, which means that staff nurses have to be highly skilled in assessing needs, planning and implementing care, and making decisions on the treatment of children whose conditions can deteriorate suddenly. Most children's hospices will initiate resuscitation procedures in emergencies. Deciding whether or not to resuscitate is an important part of the assessment and review process, which is done in consultation with the parents and, where appropriate, the children or adolescents.
More supportive care for children with life-threatening or life-limiting conditions has meant that an increasing number survive into adolescence and young adulthood (Thornes, 2001). A growing number of children's hospices are setting up adolescent units that offer specialist care for young people. Such units enable adolescents to meet peers and share experiences, providing them with the facilities they need to be independent and explore the issues facing all young people at that stage in their lives.
Staffing in children's hospices
Specialist youth workers and experienced staff enable adolescents to work through their fears and feelings, and to express themselves as individuals. This is an important part of helping them to develop autonomy, particularly as their chronic medical conditions often mean that their parents are involved in medical decision-making beyond the age at which most young people become self-aware and take control of their lives (Thornes, 2001).
Specialist respite care is the main focus of children's hospice work. Most children's hospices employ a multidisciplinary team, including sick children's staff nurses, nursery nurses, physiotherapists, occupational therapists, play specialists, teachers, youth workers, social workers and care assistants. Some also employ link workers to support families from different cultural backgrounds.
Nursing in a children's hospice is very different from working on a busy paediatric ward. There is a different pace and a different focus. The emphasis is on creating time and space to care for the whole child in a way that is often not possible in hospital. Many children using hospices have severe physical and learning disabilities. The high staffing ratio gives nurses the time to get beyond those disabilities and discover the children's strengths, their likes and dislikes, what makes them smile and laugh, and what makes them cry. Individualised care plans often concentrate as much on the child's preferences in music, toys and routines as they do on nursing care.
The focus on the child and family means that cuddling, talking and playing are an integral part of work in a children's hospice. Children often come to the hospice for several years before their condition becomes terminal. This enables a strong relationship to be built up, and the hospice and staff can become almost a second home and family.
Excellent basic nursing care, such as good general hygiene, pressure area awareness, and oral, bowel and bladder care, is fundamental to the work of children's hospices. More specialised care includes tube feeding via nasogastric, gastrostomy or jejunostomy tubes.
Many of the children have difficulties tolerating food or feeds and the degenerative nature of their conditions mean that some require regular suction to remove secretions and maintain a clear airway as they are unable to do this for themselves. These factors put them at risk of aspiration pneumonia. Others may have severe epilepsy or require oxygen therapy. Some hospices care for children with central venous catheters, peritoneal dialysis or ventilators. The aim is to provide any care that parents might be expected to provide at home.
Many of the children require 24-hour care. Where possible, children's hospices aim to operate on a 1:1 ratio of staff to children but this is not always feasible at night. Some of the children are hyperactive or exhibit challenging behaviours. The children's hospice movement acknowledges that such children should have freedom to move around and express themselves while their safety and the safety of other children is ensured. Staffing levels and allocations reflect these needs (Association of Children's Hospices, 1999).
The strong relationships that develop during a child's visits to a hospice can be of enormous value and support to families after a child dies. Many children's hospices offer bereavement care in the form of individual or group work and families often maintain links with the hospice for some time after the death of their child (Phillips and Burt, 1999).
Children's hospices are bright, airy, cheerful places full of fun and laughter that focus on letting sick children have a childhood and help them to live whatever life they have to the full. Coming to terms with the death of a child is never easy, no matter how serious or how long the child's illness. However, much of the job satisfaction that comes from working in a children's hospice derives from the fact that by offering their care and support, nurses help to make the situation more bearable.
- Further information about children's hospices can be found on the Association of Children's Hospices website: www.childhospice.org.uk, or by contacting them at: King's House, 14 Orchard Street, Bristol BS1 5EH, tel: 0117 905 5082.