Parents’ experience is now rightly considered a vital component of all healthcare service development, research projects and charity services. King’s College London, in partnership with academics from the Universities of Leeds and York, has developed a suite of new resources to support the healthcare, charity and academic sectors to engage safely and responsibly with parents of seriously ill children and bereaved parents.
There are many things to consider when engaging parents, particularly bereaved parents or parents of disabled children and children with life-limiting or life-threatening conditions. We recognise that it’s not always easy to know how best to approach engaging parents and we wanted to better understand what parents felt we and others could do to ensure they are supported throughout the process, so that we can all do better.
After a number of discussions, in 2023, we commissioned Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation at King’s College London to develop good practice guidelines for those working with parents of seriously ill children and bereaved parents. The guidelines are intended for use by anyone working in the healthcare or charity sectors who consults parents and carers about their experiences.
The Institute undertook a review of existing guidance and ran two workshops with a group of parents, healthcare and charity professionals. Parents shared a wealth of information about their personal experiences, both positive and negative, of being engaged in roles as a parent, advisor, fundraiser, speaker or consultant or in research.
Parents’ recommendations can be grouped into three main areas:
1. Communication is key
Parents ask us to really listen to their experiences and meaningfully engage them in discussion. Parents should feel valued and should be kept updated on how their contribution is making a difference. It is important to be consistent and reliable and not to make assumptions about how a family will feel.
2. Build relationships
Parents want us to consider the support that they might need and to strive to provide it. They want us to take time to understand their story and to allow them to be active co-creators of a project. They ask us to be clear about how we’ll work together and explain why specific questions are being asked. Parents also want to know how their feedback will be used.
3. Be inclusive
Parents highlighted that not every family needs the same thing and that it’s vital to personalise activities, communication styles and ways to engage. We should never assume that technology is accessible to all parents, and we should allow parents to contribute differently depending on their preferences day to day. Flexibility is vital.
A short film and guidance materials are now available for free for anyone working with parents. These can be accessed below. These materials will be invaluable, providing practical advice and food for thought on how to engage with parents thoughtfully, safely and responsibly.
True Colours and King’s College London would like to express our thanks to all the parents and professionals who took part in the workshops and helped to co-design the materials.
Co-working with parents - film
