As part of our new dedicated parental support service, we commissioned Parenting NI to undertake a research project to understand parent/caregivers’ experiences of anxiety during cancer and the impact their anxiety has had on them as individuals and as a family. The research was funded by the Department of Health through the ‘Cancer Charities Support Fund,’ administered by the Community Foundation Northern Ireland.

Cancer impacts all areas of family life and the future can become very uncertain. Family life is totally disrupted yet parents endeavour to keep going with ‘normal’ day to day living for their children. As a charity we believe that parents, children and young people are the experts on their needs and the aims of this research were:

• To ensure the voice of parents is heard in relation to their needs
• To understand and build better support for parents to help them cope with anxiety
• To provide evidence for recommendations and to advocate on behalf of parents
• To build support networks for parents with other charities/stakeholders

Research Findings

The Surveys methodology included parent interviews, focus groups and an online survey. Of the 97 parents/caregivers surveyed, 98% reported that a cancer diagnosis heightened their anxiety, 90% of respondents said a cancer diagnosis heightened their children’s anxiety and 94% reported that anxiety had a negative impact on their mental health.

Definitions of anxiety included but were not limited to; mental health, worry, well-being, stress, state of mind, burn out and depression.  Examples of situations that lead to heightened anxiety included hospital appointments and tests, COVID, fear of the unknown and the impact of cancer on family relationships, confusion and loss of control.

When asked whether there is enough support available to help parents/caregivers cope with anxiety 59% stated there is not. Parents also shared their thoughts on the types of support that they believed would help them manage and cope better with anxiety. This included face to face support (37%), parental support groups (35%) and online support (23%).

Report Recommendations

From this report three key strands of support emerged:

• Direct Individual Support
• Parental Group Support
• Strategies to Improve Coping

 Regardless of whether a child or parent has been diagnosed with cancer, the heightened levels of anxiety experienced by parents/caregivers is a major cause for concern. We are acutely aware that when parents are heard, feel supported, have access to direct service and can connect with others in similar situations, then they are better placed to offer much needed support to their children and young people.

In Northern Ireland there are a number of key organisations, charities, health trusts and others who all provide support in this space. It is incumbent upon us all to work together to ensure parents have access to the best support possible. It is also of critical importance to have a fully implemented cancer strategy in Northern Ireland.

This research supports the need to provide ongoing opportunities for parents impacted by cancer to meet with others in similar situations. There should be ongoing groupwork opportunities for parents that provide support/information on ‘parenting through cancer,’ specific issues to include, coping with anxiety, communication with children, relationships and managing family distress.

Parents also need to be offered a range of therapeutic support. This support also needs to be available online, in-person or via phone.

You can read the Parents and Anxiety Report in full here.