A childhood diagnosis of cancer can be a devastating experience for a family, influencing every aspect of family life. It is important to be aware that although each experience of cancer is individual, families need not travel this journey alone, and that support is available. Following diagnosis, children with cancer and their families may find themselves in a whirlwind of doctor’s appointments, treatment plans and medications. Indeed many families compare the experience to travelling on a rollercoaster.
There are a number of ways in which a Social Worker can provide support and assistance with regard to childhood cancer and its impact on the family. If you feel you would benefit from assistance in any of these areas, ask about the Social Worker in the hospital your child is attending.
How much information do I give my child?
Parents have the right to choose how much information to give a child regarding their diagnosis, treatment and prognosis. The appropriate level of information is dependent on factors such as age of the child and developmental stage. Some children are very curious by nature and will ask questions. Others may not want to know. Many parents find it helpful to be as open as possible with children, as this can prevent them from relying on half-truths or using the Internet to research their condition. Many find that atmosphere of openness in the family lends itself well to coping with a childhood diagnosis of cancer. You can seek further support/ advice from your medical social worker relating to this topic.
What do I tell my other children?
Again, it is a parents right to choose how much information to disclose. Information provided in the previous section (with regard to age, developmental stage, curiosity etc.) also applies here. In some cases, siblings may have difficulty adjusting to changes in lifestyle. As such, it can be useful to help them to feel included (to whatever extent is appropriate) in the treatment process.
What if my partner/ I require emotional support?
A childhood diagnosis of cancer can impact on each member of a family in different ways. Some parents may require external support to help them to adjust and cope. Social Workers can provide emotional support to families of paediatric patients throughout, and sometimes after treatment. Some of the other resources available to child patients and their families may include psychology and play therapy.
How can I best serve my child’s emotional/ psychological well-being?
Many children with a diagnosis of cancer cope well emotionally. As a parent, you are often the best judge of your child’s emotional well being. It is normal for a child to be scared, worried and even fed-up when receiving treatment for cancer. This does not necessarily mean that they require psychological assessment. However, if your child’s behaviour undergoes significant change during treatment (i.e. they become very anxious, low in mood, reticent or in some cases, clingy) and you are concerned, it is best to discuss this with their doctor, a psychologist or a social worker to ensure that the appropriate intervention can be made.
Where can we find accommodation during treatment?
If a child is receiving treatment as an outpatient, it may be necessary to arrange accommodation for the duration of treatment. Some hospitals have special facilities to accommodate children and their families. In other cases, it may be possible to support some of the cost of alternative accommodation through a community welfare officer (CWO) supplementary payment. Ask your Social Worker about the facilities available in the hospital you are attending.
What about childcare for my other children?
It may be possible to rely on another family member or friend for childcare arrangements while one child is receiving treatment. Don’t be afraid to ask family/ friends for support at a time like this. If this is not possible, and it is necessary to support childcare costs, the CWO (see section below) can sometimes offer a (means-tested) supplementary welfare allowance to support this cost.
Your Community Welfare Officer is based in your local health centre or local health office
A phonebook or the Health Service Executive web site (www.hse.ie) can give you information about your local health centre. The HSE has a call save information line number Mon-Sat. 8am-8pm also provides such information. Call Save 1850 241850 or Email: firstname.lastname@example.org.
How do I manage transport costs?
Transport costs are a difficulty for many patients with a diagnosis of cancer. Some hospitals have access to a transport service. If transport costs are an issue, it may be possible to get assistance from your CWO or from other financial aid sources. You can ask your Social Worker about this.
What do I tell my employer?
Most employers will be accommodating if a parents need to take time off to care for an ill child. Some may provide assistance with regard to Carer’s Benefit (see below) A Social Worker can provide a supporting letter for these purposes.
Am I, or is my child entitled to a Medical Card?
A medical card issued by the Health Service Executive (HSE) allows the holder to receive certain health services free of charge.As with adults, paediatric oncology patients are not automatically entitled to a medical card. However, medical card sections across the country can be quite sympathetic when it comes to serving paediatric patients. The medical card is still means-tested, however the full circumstance surrounding a patient’s application will also be taken into account. Supporting letters from the medical team and your Social Worker can be very useful in these situations.
How soon should my child return to school?
This is dependant on a number of factors such as (i) the nature of the child’s illness (ii) the physical and emotional impact of treatment (iii) their own wishes, (iv) the school’s capacity to manage a sick child. Many children return to school successfully quite soon after treatment has been completed, but children should pace themselves and allow some opportunity to recoup.
How can my child’s school get involved?
Most schools are very understanding when it comes to dealing with an ill child. Some are uncertain as to how they will manage a child after treatment. It may be necessary for schools to liase with members of the multi-disciplinary team in order to best support the needs of an ill pupil. Clic Sargent (website address available below) has a number of online resources for schools.
What supports are available when treatment has finished?
Social Workers can provide assistance with regard to discharge planning, in order to ensure that all appropriate services (such as community OT, Public Health Nursing and Home Care Teams) and appliances (such as wheelchairs, hospital beds & nebulisers) are made available to paediatric patients and their families when treatment is completed. This of course is dependant both on the needs of the child and the resources available in the area in question.
What if recovery is unlikely?
When children receive a poor prognosis, they are often referred to the hospital’s Palliative Care Team, and on discharge, to the local Home Care Team. Many (however not all) children who have been referred to the Palliative Care Team may be able to access the support of a Palliative Care Social Worker in the community. They can provide support with regard to practical issues, emotional & anticipatory grief work, family work and bereavement aftercare. Some hospitals also have palliative care and bereavement social workers. Many hospitals facilitate Bereavement Support Days or programmes in the aftermath of the death of a patient. These can help families to understand the grief process and develop ways to manage their loss.
The sadness experienced by families when a child dies is both devastating and long-lasting. It is not unusual for parents to feel that they are going mad following the death of their child. You may feel the need to contact your GP/ local hospice/ the hospital your child attended to enquire about bereavement support.
‘Precious Times: a handbook on palliative care for parents of children with cancer’ (ICS in conjunction with OLHSC, Crumlin)
www.cancer.ie (Irish Cancer Society)
www.wish.org (Make a Wish Foundation)
www.cdhelpinghands.ie (Children’s Cancer Charity)
www.canteen.ie (Canteen Ireland)
www.hospicefoundation.ie (Irish Hospice Foundation)