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chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

Informing Families

Informing Families Consultation and Research Report Parents and professionals felt that individual communication styles vary, with some displaying sensitivity and empathy while others provide less supportive communication. “People who came here tonight [to the focus group] are people who are interested in the subject, so are probably doing it well but in the generality of paediatrics there may be a lot of people who are not doing a great job in a sense, and maybe don’t realise that they are not doing a great job.” (Consultant Paediatrician) “I think it varies as well, some people are better, and some people are sensitive and aware of breaking bad news, as well as to point out that it’s not all doom and gloom that the child has some abilities as well. And some people are a bit uncomfortable, they don’t know how to deal with it themselves I suppose, and I’m sure it can come across as being uncaring and a bit harsh and they think we’re trying to get it done as quick as we can. It’s very hurtful for parents.” (Paediatric Nurse) Many groups, both parents and professionals, identified parents’ shock as a significant factor of the initial consultation when a diagnosis is presented. Both parents and professionals indicated therefore, that only a very small percentage of the information presented is absorbed at the first disclosure. Short precise sentences in simple language were recommended to help make the information as clear as possible. “He said ‘There is no easy way to tell you this. Our tests indicate that your son has hearing loss and that it is significant. We need to do more tests.’ They offered genetic testing. [The mother was at this time pregnant with her second child]. ‘I came home with two things in my head; that my son was deaf, and my baby might be. He was so good and professional, but that is all I heard.” (Parent) All groups asserted the absolute necessity for a second, follow up appointment to take place within the first week, to go back over the information, and to clarify and to answer queries that the family may have. The importance of clearly explaining the meaning and significance of any medical terminology used was made clear. Some parent’s stories showed how the significance of the diagnosis was not apparent to them for some time after the diagnosis was given, due to the use of medical jargon and or unclear terminology. “She said ‘You’re carrying a very small baby’ and you know how you think, ‘Thank God’ because all you think of is ‘Push push, great news altogether’. I didn’t realise how small.” (Parent) Professionals spoke particularly of the need to make clear any statements about ‘developmental delay’; and to clarify the implications as to whether they thought the child might ‘catch up’ and the possible outcomes if the child does not. There is a need to be clear about the implication of this gap for the future. Professionals in several groups spoke of their feelings of needing to be strong for the families and to hold in their own emotions, which contrasted with views of some of the families, who felt comforted by the expression of empathetic emotions on the part of staff members. “You have to hold a lot of the steady thoughts for them, you can’t discuss it while breaking down and crying.” (Psychologist) [A mother was having a scan of twins at 30 weeks.] “There was a nurse going on her break and she said ‘I will stay with you’. I said I’d be fine but she said no, she’d stay with me, I was on my own. [The scan could detect no heartbeat] I just looked at her and she started crying. Neither of us, nobody expected this. I said ‘Both of them? She said ‘No, there’s one but it’s very weak’. When the babies were delivered no-one said if it was a boy or a girl. On the way out the door the nurse that was going down with [the surviving baby] turned back to me and said ‘we’re going to do our best for your beautiful daughter’, and that was the first that I knew they were little girls.” (Parent) 59 4. CONSULTATIVE FOCUS GROUPS WITH PARENTS AND PROFESSIONALS

Informing Families Consultation and Research Report Recommendations: Recommendations made by both professional and parent groups: ● The news should be communicated with: - Empathy - Sensitivity - Honesty - Respect - Compassion - Understanding ● The language used to deliver the diagnosis should be: - Simple - Understandable - Straightforward - Appropriate ● Short, precise sentences should be used, particularly taking into account that many parents may be in shock when first hearing the diagnosis and may not take in a lot of information. ● Parents should be listened to. Listening to parents allows for the communication to be tailored to the individual needs of the family. ● Concerns that parents express should be taken seriously and followed up on. ● It is of vital importance that realistic yet positive messages are conveyed. Hope should be given along with the diagnosis. Positive messages can include describing support and assistance that will be available to the family and focussing on the individual child as a person, with the disability secondary. ● Staff members should clearly explain any medical terminology used, along with the implications and significance of any information given about the child’s diagnosis. It is important to elicit the parents understanding of the information given and it should not be assumed that the parents have prior knowledge that would lead them to understand the diagnosis given without explanation. ● Parents should be encouraged to ask questions ● It is extremely important to keep communicating honestly with the parents at all times, including when there is uncertainty, so there is never a large gap between what parents know and what professionals know or are investigating. ● Professionals should seek to build trust with parents. ● The reactions of the parents should be acknowledged, and taken into account when communicating with the family. Parents will have different reactions and different coping mechanisms. Some may feel the need to ‘walk away’ for a period of time to come to terms with the news, others may be in shock and take in very little, still others may wish to have significant interaction, information and support from staff. ● Parents preferences should be sought and facilitated, including how much information they wish to receive, whether they would like to be alone or if they would like someone to remain with them, whether they would like to have visitors or if they would like to have support in limiting visitors while they come to terms with the news, whether they would like input from pastoral care teams, etc. Recommendations made by parent groups in particular: ● Staff members should not use dismissive, impatient, aggressive or judgemental language when speaking to parents or children. ● Staff members should read the child’s file before meeting with the family for the consultation, as it causes additional anxiety for parents to wait and watch while the file is read. Before starting the consultation professionals should be aware of the child’s history, the reason for the consultation, and any tests/interventions that have been requested by a referring professional. ● The child’s name should always be used, and the child should never be referred to by their diagnosis. For example, instead of saying ‘this Down Syndrome baby’ staff members should say ‘Ben, who has Down Syndrome’. ● Staff members should be aware of body language and how this can be interpreted by parents, and should at all times avoid whispering in front of parents. 60

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