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Improving communication with disabled children as inpatients: A research programme to develop a parent-delivered intervention Siobhan Sharkey 1 , Claire Lloyd 2 , Richard Tomlinson 3 , Eleanor Thomas 3 , Rebecca Gumm 3 , Chris Morris 2

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  1. Improving communication with disabled children as inpatients: A research programme to develop a parent-delivered intervention Siobhan Sharkey1, Claire Lloyd2, Richard Tomlinson3, Eleanor Thomas3, Rebecca Gumm3, Chris Morris2 1 University of Plymouth; 2 University of Exeter Medical School, University of Exeter; 3 Royal Devon and Exeter NHS Foundation Trust Background Methods • This research is part of a project which aims to improve communication between staff and disabled children when they are admitted to hospital • Communication emerged as a significant influence on children's hospital experience in our systematic review • This qualitative study explores professional and parent perceptions about communication in an inpatient setting • Parents of children with a communication difficulty who had recently been admitted to hospital and staff working on a paediatric ward were eligible • 15 parents were interviewed • 25 paediatric ward staff took part in semi structured interviews or focus groups • Data were analysed using the framework approach What we found • We identified key themes for parents and professionals (Diagram A) • From these key themes we identified clear barriers and facilitators to good communication between paediatric ward staff and families Knowing (the child) Time Child’s eye view Parents Prioritising Communication Professionals Professional World Parent – Professional Relationship Barriers Diagram A: Key Themesfor Parents & Professionals • Lack of time and needing to prioritise medical care • Changing shifts make it hard to build relationships • The presence of a parent can limit the opportunity for staff to communicate with children • Staff can feel awkward communicating with a child in the presence of an expert parent • Parents can feel unable to leave because of professionals reliance on them for communicating with their child • Communication can be seen as someone else's job, i.e. no one takes responsibility • Both parents and nurses can feel that information about the child is not shared between them Facilitators • Parents and nurses agree that knowing, or getting to know, the child aids good communication • Taking the time to chat with children and making the most of ‘quiet moments’ when a child might open up • A good relationship between staff and parents can build the parents trust and the child's confidence • Nurses can take on a mediatory role in the relationship between doctors and families • The use of simple tools such as yes/no cards might make all the difference to a child How will we use this information? Key Messages • Key messages from this research are being used to develop training materials for paediatric ward staff • Parents will help to deliver these messages in hospital based training sessions which emphasise the importance of communication for a happy hospital experience Prioritising communication and getting to know a child may save time later Ask parents for information and advice about their child Everyone is responsible for trying to communicate Parents from the PenCRU Family Faculty worked with us to formulate the research question and design the project. They continue to contribute through regular steering group meetings For more information contact… Email: pencru@pcmd.ac.uk Telephone: 01392722901 Website: www.pencru.org This study is supported by the National Institute for Health research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) for the South West Peninsula. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health

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