5. What the experts say?

Margaret:

In your experience as a clinical psychologist working in paediatric oncology what would you say the usual reaction of parents and carers have to their child's end of treatment?

Emily:

I think it's important to recognise that there's no such thing as a normal or usual reaction parents and carers often experience a huge range of emotions when their child finishes treatment and they react and adjust to this in different ways.

While a child is on treatment it can be hard to process and reflect on everything that's happening so the understandable grief loss and fear can hit parents when the treatment phase is over. Certainly some parents report to feeling anxious angry overwhelmed and even lonely, whereas others experience mainly relief and happiness when their child finishes treatment. In reality, most parents will experience a number of emotions both positive and negative and this is quite normal.

Margaret:

Why do you think parents and carers can find things difficult when their child's treatment has finished?

Emily:

Well firstly, many parents talk about feeling that they must get back to normal as a family and they feel the pressure from family friends and others around them to do this but this isn't really realistic as things have changed so much. We perhaps need to look instead at finding a new normal and this doesn't have to be a negative thing and indeed some families feel it's been quite positive, for example by bringing them closer as a unit. But for others it can be more challenging particularly because finding a new way for your family to function and relate to each other doesn't happen overnight and it can take time, patience and hard work.

When treatment ends parents also describe suddenly feeling quite abandoned and isolated and this is partly because previous friendships and acquaintances may have changed in nature during the time that the child has been on treatment perhaps becoming distant or even absent it can also be related to the friendship and support offered by other families at the hospital which inevitably changes once treatment ends. For example, contact with these families can be less frequent or even difficult if they're in a different place with the child's treatment. And in addition to this many families have felt close relationships with their child's cancer care team and some children have actually spent more time with their nurses and therapists than they have with friends our extended family. The hospital and its teams can seem like a safe and sympathetic place and families can find it hard to separate from the safety of this.

Of course, some families can't wait to get rid/away from us all but that's down to the individual. A third example is that there's often an expectation that worry and anxiety will reduce once treatment ends and to a degree this can do, so for example the risk from common infections is less of a concern and as are ongoing impacts of treatments such as sickness and fatigue from chemo' however there's also something of a safety net about treatment in that parents know that the medical team are always available if needed and they're monitoring their child closely. Once a child reaches the end of treatment this changes and parents can feel more rather than less responsible for looking out for their child.

Parents also say it can become more difficult to ask people for things you need for your child or to know if this is appropriate or even okay. If you do feel like this you're not alone and it's important to share those worries with your child's cancer care team as they will still have regular follow-ups and the team can make sure that you know who to contact if you do have concerns.

Margaret:

Finally, what would you recommend to parents who feel they are struggling?

Emily:

I think the most important thing is to let people know how you're feeling and to talk about it. Bottling things up often just encourages anxieties to grow and become increasingly overbearing, talking about them instead, can help you to recognise that many of your feelings and reactions are actually quite normal. Sometimes having things out in the open also makes it easier to seek/take action or to seek help if it's needed.

I'd suggest that talking to friends and family if you can or perhaps to other parents who have been through similar experiences it could be that you'd also benefit from speaking to a professional who could support you with some of the difficult emotions that you may be feeling remember there's nothing wrong with asking for help and it's often better to do this early on, rather than a crisis point, should things get too much. As a team we recognise that the end of treatment can be really difficult for parents and carers and we will always offer whatever support we can or point you in the direction of others he may be able to help.