Probably the most important thing for family members to know is that although childhood cancer is rare, its cure rates are high. Treatment is very well organised in specialist centres and that children and young people tend to cope well with the treatment. Overall survival rates are 82% [1] rising to above 90% for common Acute Lymphoblastic Leukaemia (ALL).
Patients will most probably be an inpatient for anything from one-four weeks at initial diagnosis, during which time professionals, relatives and friends are all welcome to visit the child or young person. Encouraging extended family to visit gives the parents/carers the opportunity to take a break, or spend time together or with the siblings. Family and friends can offer practical help such as shopping, cooking and collecting siblings from school, etc. After the initial diagnosis, the majority of illnesses are treated either as an outpatient or on a cyclical basis of brief hospital admissions for chemotherapy.
What can a community health care professional do to support the family?
The families really appreciate any professional who was already involved in their care making contact, even if there may have been a delay in diagnosis, allowing this to be acknowledged. It will have been explained to the families that unfortunately it is the norm to have been seen by primary, secondary even tertiary care (often more than once) before cancer is diagnosed, as it is relatively rare in the children and young people age group.
The General Practitioner (GP) and Health Visitor (HV) are families’ consistent medical professionals long after their cancer treatment is completed. Around six months after a child or young person completes treatment they will be asked to return to contacting their GP if they become unwell (their regular follow-up appointments at the hospital continue also). If there has been no contact between the GP and the family throughout the duration of treatment this can be a difficult transition.
Initial contact with the GP after diagnosis may be made by parents/carers to request a “Fit for Work” / sick leave note. Health visitors/community nurses will often be involved in supplying sundries even if not involved for emotional support. As a community professional you may not be an expert in cancer in children and young people, but you are an expert in your local area and know what help and resources are available there.
A few GP surgeries offer a flag system for families facing serious or complex challenges. This means that when any immediate family member attends the surgery they are fast tracked where possible and their circumstances are know amongst the practice employees. This can help families feel supported.
If the child or young person becomes incurable and chooses home palliation, input from the community multi-disciplinary team (CMDT), alongside the paediatric haematology / oncology team, is very valuable. This phase is often easier for all parties if the CMDT members were already involved before the end of life prognosis.
Staff support for community teams
How we explain about clinical trials to the child, young person and family
Clinical trials are available for most cancers in the child and young person age group. If they are eligible, parents/carers will be asked to enter their child into the appropriate one. Parents/carers do not always tell their extended family and friends about this as some trials are very complicated and take a lot of time to explain. Family members may try to discourage trial entry, mistaking these treatment trials to be early phase experimental trials, which is rarely the case (unless appropriate.)
Trials are explained to the family as containing a “standard” treatment arm and a trial arm(s). The trial arm(s) is believed to be as good, but it is hoped it will be better than the present standard treatment. One can choose not to be in the trial (so standard treatment would be given) but one cannot choose the trial arm. Parents/carers and children and young people are given trial specific information sheets.
All PTCs have a research nurse who can also spend time with the family providing additional support. Children’s cancer clinicians have worked collaboratively on a national scale since the 1970’s and this has contributed to the vastly improved survival rates.
Information about clinical trials for families
A guide to clinical trials - factsheet for parents
Organisation of children's cancer care in the UK
Practical and emotional support offered to families by treatment centre
Every family with a child or young person with cancer will have a CLIC Sargent (children’s cancer) Social Worker and a Paediatric Oncology Outreach Nurse Specialist (POONS) / key worker allocated to them. Both of these services offer practical and psychosocial information and support in the hospital and via home visits. The children and young people cancer units also have access to the full range of multi-disciplinary team members (link to team supporting CYP) including play specialists and psychologists who, when necessary, can work with the patient and / or their parents/carers on a one-to-one basis.
Hospital chaplains and Faith Leaders are also available in most hospitals and a valuable resource. A cancer diagnosis is known to cause spiritual pain and may cause people to question the meaning in their life. Even when the family have no particular faith they can be comforted by the spiritual support of Faith Leaders.
The specialist psychologist, when necessary, can offer advice and intervention around emotional and behavioural aspects of the child’s care. The Psychologist will see the child or young person and their parents/carers individually or together, as required. Input can include siblings and extended family where appropriate.
Parents/carers are given a centre specific Family Journal. This is a file containing a vast amount of information and advice in a friendly and easy to read format (available via the POONS). It contains all the “must know” information and more. The “must know” information about how to keep their child safe is also given verbally by staff in the lead up to discharge. This information exchange is documented.
There are many children's cancer care booklets, leaflets and factsheets, as well as resources from many individual support services and disease-specific groups. Some families want all the information they can possibly get and others want information on a need-to-know only basis.
Information for parents, patients and families
Over and above the essential information, unit staff take their lead from the child or young person and parents/carers as to how much information (especially written) to give them and when to offer it.
Parental relationships
Parents/carers’ relationships come under a lot of psychosocial, practical and financial strain when their child is diagnosed, as they are pulled in different directions between the sick child and siblings, hospital and home. It is helpful if the professionals around them try to encourage parents/carers to spend time together to discuss important decisions, support one another and allow time to catch up.
For parents/carers who are not together as a couple, but who have equal parental rights and responsibilities, it too is important that they both have equal access to the information and decision-making meetings with professionals. If the child or young person is to stay with both parents/carers in different locations, then each must have the full discharge information explained in order to keep them safe.
Parents/carers should be encouraged to share their anxieties and worries and are given open access to their cancer unit at all times. They are reassured the cancer is not due to anything they did – or didn’t do. There are links for further resources at the end of this section.
Other family members
The following information is useful for families and will have been discussed - to a greater or lesser extent, depending on family circumstances - by members of the hospital care team.
Siblings
Siblings often fear it is their fault their brother or sister got ill because they fought or were naughty. They can present with symptoms themselves and fear that they will be next. Being aware of this and speaking to them about what is going on and what their sibling is going through is helpful. It is common for siblings to feel left out, thinking that their parents/carers do not have time for them emotionally or physically. The sick child or young person may be looked upon as the “lucky” one who gets all the presents and one-to-one time with the parent(s)/carer(s). Ask other family members to be mindful of siblings in their enquiries and gifts. We encourage families being as open as they can be when speaking to siblings, to tell them they can ask questions and that it is alright to be upset. It is frequently at school where children show they are upset [1].
They may:
- Withdraw and become very quiet
- Become disruptive in the classroom
- Cry easily
- Become frustrated and have outbursts of anger
- Fall behind in class work
- Get lower marks than usual
- Start missing school
- Become rebellious towards teachers or parents
- Have arguments and fights with friends and other children in the class.
The Paediatric Oncology Outreach Nurse Specialist (POONS) will arrange to visit the school and offer the teachers information and support (link School), particularly when this is to discuss the diagnosis and implications of health on needs at school. When the issues around school are more related the social and emotional needs of the child, family, school staff and classmates, the CLIC Sargent social workers are also available for school visits in most locations. Some centres run events for siblings, such as a Christmas party, and others an annual sibling support day.
There is a range of information available for brothers and sisters:
CCLG publications on helping brothers and sisters
Grandparents
Grandparents face a double blow – worry for their child as well as their grandchild. Many have said they wish it was them as they have lived their lives. It is important to explain to grandparents that cancer in children is probably not what they may imagine. They have lived in an era where cure rates were very low and treatment given in the absence of the supportive care we have now.
It may help to explain that most childhood cancers are different to adult cancers, often arising from primitive cells in the body as opposed to bodily organs. Children get sicker quicker than adults, but they also get better faster.
Grandparents often take on a new and demanding job - caring for the other grandchildren, school pick ups, driving up and down to the hospital, being “on-call” to care for siblings when the sick child needs to be admitted at short notice. This help is invaluable but as time goes on can be very tiring. We would again try to encourage a little break for them when possible.
References
[1] Children’s Cancer and leukaemia Group (CCLG) (2014) Children and Young People with Cancer: A Parent’s Guide 2014. London, Great Britain
[2] Gov.uk Parental rights and responsibilities read May 29th 2014