1 ‘How do you want me to talk to you?’ Supporting practitioner communication with children with exceptional healthcare needs Workshop developed by the National managed Clinical Network for Children with Exceptional Healthcare Needs (NMCN CEN) Author: Claire Edwards for NMCN CEN

2 Welcome and introductions The National Managed Clinical Network for Children with Exceptional Healthcare Needs (NMCN CEN) aims to: Improve care for a group of children and young people defined by their complexity of healthcare, not by their diagnostic label. Respond to issues identified by service users and service providers Produce tangible resources such as the film and workshop that can be used to improve practice This workshop is designed especially for professionals who do not work with children with complex needs on a regular basis and practitioners early in their careers.

3 Introductions Facilitator introduction Participants – Who are you and what is your role? What are you looking for from this workshop?

4 Housekeeping and Ground Rules Housekeeping Fire alarms Comfort Breaks Mobile phones Ground rules Confidentiality Respect each other’s right to express themselves Listen to each other Take responsibility for yourself Use of ‘I’ statements Anything else?

5 Aims of the workshop To: Increase awareness of your own feelings in relation to working with children and young people who are non-verbal Provide an opportunity to reflect on those feelings and their implications for your practice Provide an opportunity to increase your confidence to engage with children and young people with exceptional healthcare needs and their families

6 What does the title of this workshop say to you? ‘How do you want me to talk to you?’

7 Reflective statements Pairs exercise: Discuss the following statements in terms of whether you agree or disagree with them - I would always use the parent as an interpreter With the right augmentation equipment I would be able to get the child to communicate with me Non-verbal children usually have learning disability as part of their overall condition Everyone with a learning disability can understand some things about their care It is important to acknowledge the child when talking about their care and treatment I feel awkward when I meet a child with complex needs It is more important to get the information quickly than to include the young person in your discussion

8 Watching the film In small groups – Watch the film and then discuss with regard to each of the following questions: 1. What do you feel watching the children and young people in the opening sequence? 2. What sort of feelings are expressed by the practitioners? 3. What do you think about Dr Russell’s comments about the use of touch? 4. Identify what the two mothers say and do with their children, Peter and Jessie? 5. What does the practitioner, Shona say and do with Rylie? 6. How did you feel as you watched these interactions with the children?

9 Observations 1 You may have identified the following – 1. A range of feelings within yourself when watching the children including anxiety, discomfort, compassion, sadness, happiness. 2. The practitioners expressed feelings that included awkwardness, fear of being patronising, avoidance, confusion, a tension between getting the information and including the child, the need to learn from the children and to adapt your communication accordingly 3. Some possible thoughts: – using touch is something you would not find easy -you are comfortable with touch and use it regularly - you would always ask first -using touch to communicate is not something you had thought about before

10 Observations 2 4. Mothers – mirroring of sounds offering clear choices verbally responding to eye movements and smiles on-body signing 5. Shona – describing what she is doing asking questions mirroring sounds 6. Feelings – I can learn from watching them.. The relationship is important... I’d feel self conscious... It’s all about being respectful...

11 Identifying the principles of good practice In small groups – In the light of what you have seen and heard in the film what are the principles towards which we should have regard when meeting non-verbal children and young people? Identify the elements of good practice Are these elements different depending on where you meet the child or not? Draw from your experience Write these on to the flip chart Agree who will speak for the group One group to share their discussion and others to add in anything missing or that you feels needs greater emphasis

12 Principles of good practice in communication 1 When meeting a child/young person – Do not assume that the child/young person will be ‘used’ to being in hospital or in a clinic Acknowledge that being in hospital or in a clinic may be distressing Introducing yourself directly to the child/young person by name and by profession and explaining what your professional title means Addressing the child/young person’s parent or carer directly Asking the parent or carer if there is anything specific you need to know about the child/young person’s communication If both parents are present ensure that you address each of them and check that there is a shared understanding of the concerns and/or what information you share Some of these principles will mirror those required for any person in a hospital environment

13 Principles of good practice in communication 2 Asking what might be the best way to communicate in terms of your position e.g. ‘Would it be best if I crouch down by your child’s wheelchair?’ Having full regard to what you are told and referring to it when speaking to the child/young person e.g. ‘I understand that if you don’t like something you will look away’ Describing what you are going to do and why and pitching this at an (developmental) age appropriate level and tone: ‘I am going to look at your gastrostomy site as there seems to be an infection’ (14 year old) ‘I am going to look at your tummy as it seems to be sore’ (6 year old)

14 Reflective practice This workshop has been developed to encourage you to reflect on your own practice in relation to communicating with children, young people and their families. Through reflection you can consider your own practice and how you might want to change or improve it. Reflective notes are used by health professionals as part of CPD. There are two types of reflection – Think while acting: Reflection ‘in’ action Consider what has been done: Reflection ‘on’ action Which are you?

15 Tool to aid reflective practice Gibb’s cycle 1988

16 How to use the cycle Gibb’s cycle provides a structured way to think about a situation you found challenging so that you can consider how you might do it differently – As a staff group to gain other perspectives and insights Individually to gain insight into your practice It can also be used to reflect on a positive experience and piece of work that went well so that you can identify why it was effective and use the learning in other situations.

17 Principles into practice Triad exercise – in groups of three carry out the following: Each person to take a role – Parent Child/young person Practitioner Using the scenario and the principles you have identified - each person in turn has the opportunity to be the practitioner trying to get a piece of information about the child/young person. As the practitioner draw on your own role – what would you want to ask this child? 5mins each

18 Summary Feelings of awkwardness and anxiety in communicating with non- verbal children and young people are understandable We must move from these feelings to be effective in our practice Our feelings affect our behaviour and this will have implications for our practice in relation to children, young people and their families You can use reflective practice to improve your skills Poor communication has a negative impact on children, young people and their families Awareness of our feelings can help us to change our behaviour There is a set of principles that can guide our practice These principles are rooted in the very human values of courtesy and respect