caring for children with life-threatening illnesses
by Kendra Inman
A growing number of medical professionals believe young people with life-threatening illnesses should be involved in decisions about their treatment, even when those decisions are difficult and heart-rending.
© Getty
Young people with life-limiting illnesses have a wide range of diseases and disorders. Some are genetic and obvious from a very young age. Others, such as cancer, are contracted in childhood or adolescence. Whatever their condition, many of the issues faced by children and families dealing with serious illness are the same.
palliative care
Advances in medicine and disease management mean that many seriously ill young people are living longer than ever before. With this in mind the kind of support on offer must keep pace with the families changing needs, say experts.
Dr Ann Goldman, a consultant in palliative care at Great Ormond Street hospital says help for children and their families' needs to be flexible. There are critical moments in a disease when families will want intensive help from professionals and other times when they'll want the service to pull back, says Dr Goldman.
The popular though wrongly held view is that palliative care is about pain relief during the last weeks of a patient's life. Palliative care is not what professionals do when all else has failed, says Dr Goldman. 'Rather it's a philosophy, an approach to care which is not about dying. It's about living optimally with a life-threatening illness.'
Good palliative care treats the whole person including their physical, emotional, social and spiritual needs. It includes support for family and friends, management of distressing symptoms, and provision of respite care.
what young people want
Campaigners for improved palliative care have identified gaps in services for young people. A working party chaired by Dr Ann Goldman of Great Ormond Street and including The Association for Children with Life-threatening or Terminal Conditions and their Families (ACT), the National Council for Hospice and Specialist Palliative Care Services and the Scottish Partnership Agency for Palliative and Cancer Care, produced a report, Palliative Care for Young People, setting out what young people and their families need from the service.
taking control
Adolescents should be treated as a distinct group and services tailored to their needs, says the report. Those interviewed for the research were adamant they wanted to be involved in decision-making and wanted to contribute to their own care. The children interviewed for the report said sometimes they resented their parents answering questions such as 'how are you feeling?' on their behalf. At other times, particularly when they were feeling very ill, they valued their parents for talking to professionals for them.
One young person told researchers: 'At one point I decided not to take my calcium tablets – they tasted like chalk. But then the doctor explained the pros and cons and I realised that they were right. I could then evaluate the situation and make a decision. Sometimes this information stage is missed out.'
state of independence
Many of the conditions young people suffer cause progressive deterioration over time and as a result the child or adolescent becomes increasingly dependent on their family – at a time when most young people are enjoying greater independence.
Parents want to protect their children – feelings that are heightened when that child is ill. Research shows that over-protection as the child grows older can make them feel more disabled. Parents often need help in 'letting go' and allowing their child greater independence. The young person may want to discuss sex and relationships and professionals need to be trained to talk about sensitive issues.
The youngster may also need to speak to someone outside the family about emotional issues. Professionals say the psychological needs of adolescents are not being properly addressed. Young people facing their own death need opportunities to explore their feelings without upsetting other members of their family.
Also adolescents with a serious illness want opportunities to do the things all young people do. They don't want their condition to dominate their lives and want to be viewed as a young person first.
help for parents
The parents of seriously ill children and young people want practical help that allows them to live as normal a life as possible, says Jill Harrison, spokeswoman for the charity Contact a Family (CAF) which helps families who care for children with any disability or special need. But this help isn't always forthcoming.
'They have to negotiate their way around the health, social care and benefits system to ensure they get the help and support they need,' says Ms Harrison. The amount of help available varies enormously across the country, she explains. 'There are often long waiting lists for the aids and equipment needed to care for their children at home. In some cases the wait has been so long that children have died before the equipment was delivered.'
The Palliative Care for Young People report says many children have conditions that were limited to childhood. Now children are surviving into adulthood and there is insufficient expertise in the adult sector to help them live with their illness.
Children with some of the rarest disorders have had difficulty getting access to the right specialist at the right time, says Ms Harrison. Some conditions are so rare that professionals in some parts of the country lack the knowledge and expertise needed to treat them. But help is available. CAF strives to fill some of the gaps by putting the families of children with rare disorders in touch with others with the same condition, and publishes a directory of rare conditions and disorders, available online, which is used by professionals and parents alike.
help for siblings
Serious illness affects the whole family. The brothers and sisters of a seriously ill child often complain about the impact their sibling's illness has on all their lives. They can resent the attention paid to their poorly sister or brother. If they feel neglected by their parents, feelings of resentment, anger, loneliness and deprivation are common. This in turn can lead to siblings feeling guilty for having entertained negative thoughts in the first place.
Young people who have had cancer or leukaemia have suggested that all families need someone outside the medical team to talk to about their fears and anger.
the right support
Money is an issue for many families. On a practical level it costs three times as much to bring up a disabled child as it does an able-bodied child, says Ms Harrison. Some parents fail to realise they are entitled to claim benefits to help them with the extra costs.
The families are also prevented from enjoying leisure activities together if the facilities are inaccessible for disabled young people.
Working families may have difficulty getting access to child care. As Ms Harrison explains, 'Many child minders won't take disabled children because of the level of care needed.'
There are times when both parents and children need a break from each other. But there is a huge gap in respite care for adolescents, and good quality respite care away from home that includes nursing is scarce, says the report Palliative Care for Young People.
The report identifies the ingredients of good palliative care. These include that each young person and the family should have a key worker to help them negotiate their way through the health and social care system and that services for adolescents should involve all the agencies responsible for their care.
help and info
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organisations
Association for Children with Life-threatening or Terminal Conditions and their Families (ACT)
Orchard House
Orchard Lane
Bristol BS1 5DT
Helpline: 0845 108 2201 (Mon-Fri 9am-5pm, answerphone at other times)
Website: www.act.org.uk
Works to improve care and services for children in the UK with life-threatening or terminal conditions and their families. Provides information to parents on a wide range of areas helping to address different aspects of the care for their child.
The Child Death Helpline
Great Ormond Street Hospital
London WC1N 3JH
Helpline: 0800 282 986 (every day 7pm-10pm; Mon, Wed, Fri 10am-1pm)
Website: www.childdeathhelpline.org.uk
Provides a listening service that offers emotional support to all those affected by the death of a child. Run by professionals and trained volunteers, almost all of whom are bereaved parents. The service is based at Great Ormond Street Hospital.
Contact a Family
209-211 City Road
London EC1V 1JN
Helpline: 0808 808 3555 (Mon-Fri 10am-4pm)
Website: www.cafamily.org.uk
Runs a free confidential helpline. Gives information and support to anyone who cares for a child with a disability or special need. Can put parents in touch with support groups.
Cruse Bereavement Care
126 Sheen Road
Richmond TW9 1UR
Helpline: 0870 167 1677 (Mon-Fri 9.30am-5pm)
Helpline E-mail: helpline@crusebereavementcare.org.uk
General E-mail: info@crusebereavementcare.org.uk
Website: www.crusebereavementcare.org.uk
Runs a helpline and offers counselling, advice and support to anyone who has been bereaved.
The Cystic Fibrosis Trust
11 London Road
Bromley BR1 1BY
General helpline: 0845 859 1000
Benefits helpline: 0845 859 1010
Welfare helpline: 0845 859 1020
Donation line: 0845 859 20 40
E-mail: enquiries@cftrust.org.uk (general enquiries)
E-mail: AskTheExpert@cftrust.org.uk (medical enquiries)
Website: www.cftrust.org.uk
Works to improve the lives of people with CF, raise the profile of CF and fund research into a cure. The website has a section called 'Living with CF' which covers diagnosis, symptoms, treatment, nutrition and CF at school.
National Council for Palliative Care
First Floor
34-44 Britannia Street
London WC1X 9JG
Tel: 020 7520 8299 (Mon-Fri 9am-5pm)
Website: www.ncpc.org.uk
The umbrella and representative body for palliative care in England, Wales and Northern Ireland.
React
St Luke's House
270 Sandycombe Road
Richmond TW9 3NP
Tel: 020 8940 2575 (Mon-Fri 9am-5pm, answerphone available)
E-mail: react@reactcharity.org.uk
Website: www.reactcharity.org
An independent UK charity dedicated to helping children with life-limiting illness. Provides children and families with practical support (such as wheelchair or washing machine) and can help with travelling expenses and holidays.
Sargent Cancer Care for Children
Griffin House
161 Hammersmith Road
London W6 8SG
Tel: 020 8752 2800 (Mon-Fri 9.30am-5.30pm)
E-mail: care@sargent.org
Website: www.sargent.org
Supports children and young people under 21 who have been diagnosed with cancer, and their families. Provides practical help and financial assistance to families in need. Services include social work, family support, grants, residential accommodation for both young people and families, home from home accommodation, mentoring, youth programme and play therapy.
The Rainbow Centre
27 Lilymead Avenue
Bristol BS4 2BY
Tel: 0117 985 3354 (Mon-Fri 10am-2pm)
E-mail: contact@rainbowcentre.fsnet.co.uk
Website: www.rainbowcentre.org.uk
Provides support and therapy to children affected by cancer, life threatening illness and bereavement.
The Compassionate Friends
53 North Street
Bristol BS3 1EN
Helpline: 08451 23 23 04 (every day 10am-4pm, 6.30-10pm)
E-mail: info@tcf.org.uk
Website: www.tcf.org.uk
Offers understanding, support and friendship to bereaved parents, and their families, who have lost a child of any age and from any circumstance. Support is offered through the helpline, local group meetings, one-to-one visits, letter contact, weekend retreats and gatherings. Produces a quarterly newsletter for parents, grandparents and siblings,
and a range of other publications for the family and for professionals. Also runs a postal library service.
The Scottish Partnership for Palliative Care
1A Cambridge Street
Edinburgh EH1 2DY
Tel: 0131 229 0538 (Mon-Fri 9am-5pm)
E-mail: office@palliativecarescotland.org.uk
Website: www.palliativecarescotland.org.uk/home/contact.htm
The national umbrella and representative body for palliative care in Scotland.
websites
The Association of Children's Hospices
www.childhospice.org.uk
Brings together over 40 voluntary sector organisations in Great Britain dedicated to the care of terminally ill children. Their website is intended to be an initial point of contact for people seeking further information about children's hospices.
Cancer BACUP
www.cancerbacup.org.uk
Provides information, practical advice and support for cancer patients and their families. Website contains a range of online information booklets on subjects including specific cancers, treatments, coping with cancer, living with cancer, and dying with cancer.
Dial UK
www.dialuk.org.uk
A national organisation for a network of 140 local Disability Information and Advice Line services (DIALs) run by and for disabled people. DIAL information and advice services are based throughout the UK and provide information and advice to disabled people and others on all aspects of living with a disability, i.e. welfare benefits, community care, equipment, independent living, mobility and transport, discrimination and holidays.
Family Fund Trust
www.familyfundtrust.org.uk
Aims to ease the stress on families in the UK who care for severely disabled children under 16, by providing grants and information related to the care of the child. Has a range of publications, details of which are on the website.
Help Adolescents with Cancer (HAWC)
www.hawc-co-uk.com
Self-help organisation for young people who have or had any kind of cancer or life threatening disease. Offers members the opportunity to take part in social outings, group meetings, workshop venture/holidays and support and counselling.
Website contains further information about HAWC, including contact details.
The Hospice Information Service
www.hospiceinformation.co.uk
Provides information on hospices and palliative care services for both professionals and the public. Online directory contains details of local hospices and palliative care services. Website has a range of links.
Hospice Net: For patients and families facing life-threatening illness
www.hospicenet.org
American-based website which provides information and support to patients and families facing life-threatening illnesses. Range of resources for patients and carers on palliative care and bereavement. Has a directory of local hospices, including a UK directory.
Making Cancer Less Painful – A Handbook for Parents (1992)
www.pediatric-pain.ca/mclp/mclp.html
This book, for parents of children with cancer, was produced by the Oncology Unit of the Izaak Walton Killam Children's Hospital in Halifax, Nova Scotia, Canada. It aims to teach parents about pain, and to help parents feel more comfortable about being involved in the treatment of their child's pain.
National Association of Citizens Advice Bureaux
www.nacab.org.uk
Information about Citizens Advice Bureaux, who offer free, confidential, impartial and independent advice in such areas as debt and consumer issues, benefits, housing, legal matters, employment, and immigration. You can search the directory for details of local centres and specialist services.
The United Kingdom Children's Cancer Study Group (UKCCSG)
www.ukccsg.org
Aims to improve the management of children with cancer and to advance the knowledge and study of childhood malignancy. The website has details about UKCCSG and its services, plus an extensive range of links.
reading
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Sibling Bereavement: Helping children cope with loss by Ann Farrant (Continuum International Publishing Group, 1998) |
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The Bereaved Parent by Harriet Sarnoff Schiff (Souvenir Press Ltd, 1979) |
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Suffering Love: Coping with the death of a child by Bill Merrington (Advantage, 1986) |
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When a Child Has Died: Ways you can help a bereaved parent by Bonnie Hunt Conrad (Fithian Press, 1995) |
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(November 2001, resources updated February 2005)
