The first 1001 days, from conception to the time a child reaches 2 years of age, are critical for their physical, emotional and cognitive development. When it is identified that a baby has a disability or illness during this period, it can present as a different parenting journey from the usual expectations. Delivering this type of different news to parents must be done sensitively and compassionately by professionals
Back in 2019, the Institute of Health Visiting developed and delivered a pilot project aimed at improving the delivery of different news to mothers to be and their families on behalf of the Intellectual Disabilities Programme. This work was so well received by both experts by experience and healthcare professionals that it was agreed that it needed to be scaled up in order to further develop the robustness of the initial project and reach a larger workforce group. This second phase has now completed.
Two of the people involved in this project tell us why this project is so important, and how it will help change lives.
“As soon as I was invited to share my story I felt compelled to do it. I knew if it helped one person to avoid the stress of being told of a diagnosis in an ill thought out way then it was worth it.
It was also really cathartic to talk about my experiences. I was told in the middle of the night, after my husband has gone home, when I wanted to sleep because my daughter’s birth had been fast and my body was exhausted. I didn’t take it in and then had to tell my husband alone.
To be able to talk about something that had actually stayed with us months after, taking attention away from the love and joy of having our little girl, was important for me. The fact that I am helping to shape training for professionals is wonderful. The interview was carried out so well, I felt really listened to and at ease talking about a really emotive event.
My specific story is actually shared in the training itself, and it means a lot to know that people are hearing it and learning better ways to deliver diagnosis.”
– A parent with lived experience of receiving different news in the first 1001 days of a child’s life
“The first 1001 days covering from pregnancy to the time that a child is two years old are critical for their physical, emotional and cognitive development. Families are vulnerable when congenital anomalies are identified as this presents a different parenting journey from their expectations. Ineffective delivery of this different news and the news itself can result in depression or anxiety in parents. This may impair parenting ability which potentially has a direct immediate and long-term impact on the infant’s physical, cognitive, emotional and social development. Different news must be delivered sensitively and compassionately by professionals. This does not always happen due to a lack of standardised training or policy in this area.
Working with parents with the lived experience of receiving different news and healthcare professionals, we developed a training intervention that equips professionals to demonstrate empathy; compassion; utilise kind, simple and truthful language; answer questions and signpost to further support using a mnemonic to structure and pace the conversation. 204 professionals received the training. Parents who co-delivered the training, emphasised that they retained a strong image of how they received their different news as a film in their minds long after they had received the news. We found statistically significant improvements in confidence and skills to provide sensitive, responsive, balanced care to families. The training may equip professionals to minimise the psychological distress associated with receiving different news which can prevent mental ill-health across the life course. It is imperative to roll out the training nationally to ensure that families adequately supported.”
– Dr Esther Mugweni – Research Lead on behalf of the Delivering Different News Study Team
To download a copy of the full report, look at the additional resources produced including a journal article or just review our easy read summary click here
For more information, please contact the project lead details below:
Project lead: Dr Esther Mugweni
Email contacts: esther.mugweni@ihv.org.uk
Web address: https://ihv.org.uk/
Twitter: @iHealthVisiting
Workforce Development for & with People with Intellectual Disabilities 