DDN Study 2
Research type
Research Study
Full title
Improving the delivery of different news to mothers and their families by healthcare professionals study 2.
IRAS ID
279289
Contact name
Esther Mugweni
Contact email
Sponsor organisation
University of Kent
Duration of Study in the UK
1 years, 0 months, 0 days
Research summary
Summary of Research
Background
In the UK, pregnant women are offered fetal anomaly screening to assess the chance of their baby being born with eleven different conditions. There is evidence to suggest that how healthcare professionals (HCPs) tell parents about their child having a congenital anomaly affects both the way parents adjust to the situation and the wellbeing of their child. In this study, we refer to this process as delivering different news (DDN), which is the process of imparting information relating to a child being diagnosed with a condition associated with a learning disability during the first 1001 days of a child’s life (pregnancy to 2 years old). The Fetal Anomaly Screening Programme also identifies other conditions which are not associated with learning disability however this study specifically focuses on conditions associated with a learning disability.
The proposed study follows on from the feasibility study which was completed in 2019. We conducted a mixed methods evaluation of a training intervention to improve how HCPs deliver different news in the South East of England. The training intervention was both feasible and acceptable to HCPs who indicated that it enhanced or consolidated their knowledge and skills, covered topics relevant to their practice and that they would recommend it to colleagues. Participants particularly valued integration of the voice of parents with lived experience in the training. HCPs reported feeling more confident in their ability to provide sensitive, responsive, balanced care to families. The significant improvements in confidence and skills reported suggest that the training may be effective in equipping HCPs to minimise the distress, anxiety, and depression associated with receiving different news. This represents a key aspect of the prevention of mental ill health across the life course.
Methods
We are now conducting a larger study to expand on the findings of the feasibility study by further developing the intervention, delivering and evaluating it. We will update the training intervention we developed in the first study by working with parents to have three additional case studies based on the recommendations from the feasibility study to include a wider range of disabilities. This will increase the range of disabilities but ensure that the training can be delivered in half a day. We will train 15 Delivering Different News Champions in 5 NHS Trusts (3 HCPs per site) to deliver different news. The NHS sites are Barts NHS Foundation Trust, Royal Cornwall Hospital, Kent Community Health NHS Foundation Trust; Medway NHS Foundation Trust; Southampton University NHS Foundation Trust. A DDN Champion will be an ambassador for delivering different news within their local area, cascading the training to colleagues, increasing awareness and knowledge of DDN within teams, enabling them to support families when they receive different news. They will also ensure that service users and those who are experts by experience are partners in the planning and shaping of local services. Each Champion will cascade the training to 15 fellow HCPs with the support from the research team both in preparation of the training, delivery and evaluation of the training (45 HCPs per study site). We will collect pre and post training data from each of the HCPs to measure changes in their knowledge, attitudes and practices of the HCPs. We will conduct up to ten interviews with managers and HCPs in participating sites as well as up to ten parents who receive different news from trained HCPs. The results of the proposed study will provide additional evidence for this training intervention and elaborate on effective ways of addressing the unmet need for DDN training. Furthermore, the study findings will be published in time to inform the National Institute of Clinical Excellence (NICE) guidance for Children and young people with disabilities and severe complex needs to be published in 2021 as well as provide evidenceSummary of Results
The first 1001 days from conception to the time a child reaches two years of age, are critical for their physical, emotional and cognitive development. When life changing health conditions or illnesses are identified during this period, it presents a different parenting journey from the usual expectations. Delivering this type of different news to parents must be done sensitively and compassionately by professionals.
There is a lack of consistent training for healthcare professionals about how to give parents this news. This can have a serious impact on the family and the baby's development, as well as the professional.
We worked with parents who had received different news, and healthcare professionals. Parents were clear that they wanted to promote positive terms, such as 'different news' and avoid negative terms, like 'bad news'. A parent who became involved in delivering the training emphasised that they retained a strong image of how they received their different news as a film in their mind long after they had received it. Together, we developed a training package that equips professionals to show empathy; compassion; use kind, simple and truthful language; answer questions and signpost to further support. Central to the training was the simple 'READY framework' which helps professionals plan ahead, structure and pace the conversation when they share different news. Our study aimed to test the effectiveness of the training package.
204 health professionals received the training. Over 80% of them had not had any training before in delivering different news. We found statistically significant improvements in the trained health professionals' confidence and skills to provide sensitive, responsive, balanced care to families. The strongest improvement was in being better able to structure conversations with families about different news. This suggests the READY framework was effective.
The training may equip professionals to reduce the psychological distress associated with receiving different news. This in turn may prevent mental ill-health across the life course. It is imperative to roll out the training nationally to ensure that families adequately supported.REC name
North West - Liverpool Central Research Ethics Committee
REC reference
20/NW/0178
Date of REC Opinion
7 Apr 2020
REC opinion
Favourable Opinion