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chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

Recommendations made by

Recommendations made by professional focus groups in particular: Informing Families Consultation and Research Report ● It is important to ensure that the parents are not isolated after being given the diagnosis - if parents wish, a staff member should engage with the parents at this time to sit and spend time with them. ● It is important to focus on the aspects of the child that are just like any other. Professionals suggested asking parents questions such as ‘Does the child look like any of your other children’, and concentrating on everyday aspects such as breastfeeding etc. (It should be noted that families indicated that the question ‘Does your child look like any of your other children’ is inappropriate as it can be very upsetting for parents and can leave them with questions. Parents suggest that when trying to elicit how much already parent knows, it is more appropriate to ask ‘Do you have any concerns about your child’ or ‘have any other members of the team expressed concerns about your child’.) ● Team members should reinforce the information already given by other disciplines so that families have several opportunities to absorb and clarify information provided. ● Some professionals indicated that it is very helpful to show parents visual images such as brain scans, in order to explain clearly a diagnosis rather than trying to describe it in words alone. Summary: It is recommended that in giving the news of a diagnosis of disability, respect, sensitivity and empathy should to be shown to the family; using honest and straightforward communication and simple language. All medical terminology must be explained; the child should be referred to by name and not diagnosis; positive messages and hope to be given with the news, with the focus on the baby or child and not on the disability 4.2.3. Provision of Information and Support Themes Parents in the focus groups reported patchy provision of information, with staff members making every effort to supply information, but not always having appropriate sources available. Some parents reported receiving leaflets that were clearly out of date, while others only heard of support agencies through word of mouth, or their own investigation; often having waited for long periods of time before the information became available. “There was nothing, there was one little leaflet that was as old as the hills, 1970s I saw on the copyright, now they were as helpful – they searched every cupboard in the place but…. It wasn’t their fault” (Parent) “I literally took out the phone book and you know those green pages from the Department of Health in the middle? Anything that was from children’s services, anything that had the word disability in it, I rang them. If I hadn’t have done that I probably would have been waiting an awful long time.” (Parent) Although professionals reported access to some relevant sources of information, there was a significant lack of information on catchment areas for Early Intervention Services, availability of support services (some that were thought to be available were no longer active), and information in languages other than English. Parents and professionals in several groups specifically mentioned the benefit of providing parents with a booklet entitled What do I do now? which was written for parents of children with an intellectual disability by a group of parents called the Parents Future Planning Group and was published in 2000. “She gave me this book, without this book I would have gone mad. This book is done by parents – Parents Future Planning Group, and it’s a fantastic book. If I hadn’t gotten this book I would have been lost. They’re brilliant – even telling you what your rights are, what you are entitled to.” (Parent) However many parents indicated that they had not received this information, or had received it very late. The professionals in the focus groups identified a lack of clear ownership of information leading to some situations where families may not receive information that is available, as one professional assumes that another is responsible for this task. One example from the focus groups graphically highlighted this difficulty. Participants in the focus group with Social Workers were 61 4. CONSULTATIVE FOCUS GROUPS WITH PARENTS AND PROFESSIONALS

Informing Families Consultation and Research Report discussing the benefits of the What do I do now? booklet when a Medical Social Worker in the group mentioned that it was not available in the maternity unit in which she worked and that she would like to receive a copy of it. When the Project Coordinator contacted her later that week to post the booklet, the Social Worker had discovered that it was indeed available in her unit, but that she had not been aware of it and had therefore never been in a position to offer it to parents. Frequent turnover of staff members means that even if information has been provided by support groups or services to those providing the diagnosis to families, the current lack of structure and ownership for this information means that new staff members coming on-stream are often unaware of it, and it therefore does not reach families. “We are constantly sending our information leaflet [to the hospital] and the difficulty I find is that the registrar changes every 6 months – so there’s no consistency there. We might get to the consultant but quite often they’re too busy. People are often told there is nothing for you out there. We’ve had parents coming in to us who have been told there is nothing for you out there. It’s very frustrating when you hear things like that, never mind the distress for them.” (Social Worker in Early Intervention Services) Trainee Obstetricians described the difficulties encountered, particularly when trying to find information for families late at night, and when Internet access is not available. Even when access to the Internet is possible, the participants explained, in some locations the ‘Net Nanny’ software makes searches so restricted that it is not possible to access relevant articles. This group recommended that there should be a national website created that would have leaflets available for download which would be suitable for distribution to parents and would provide information on particular diagnoses as well as the supports, entitlements and benefits available. The amount of information that parents wish to receive can vary, depending on their own coping style, and the circumstances of the diagnosis. Parents indicated that individual choice should be supported – some felt that providing too much information at once left parents feeling overwhelmed, in which case it would be better to provide the news in stages. Other parents found it difficult to get a full picture of all the information that they required and would have preferred to be given more detail. There was general agreement that it is therefore important to carefully gauge the level of information provided to suit the pace needed by parents. “Sometimes people need to be drip fed – like titration, it goes in in small doses. You can’t expect people to take it all in first time. They come to us for information to be clarified. It works well to give it little by little.” (Social Worker) “There’s a range of emotions and if you talk to people over ten or fifteen minutes you get a feel for where they are coming from quite quickly and then you can start. Because of the range of emotions, when you have experienced it for a while and you can see how different people react to it, you can use that data to see how you are going to handle the situation.” (Consultant Paediatrician) “It works well to say ‘What have you heard so far? – Get an understanding of where they are, what is their understanding and the level at which they operate. What does [the syndrome] mean to you? So tailor to their understanding.” (Consultant Paediatrician) The importance of providing honest information to parents at all times was reiterated; the family should be told of any suspected diagnoses that are being investigated, and any gaps in knowledge or scope of practice should be acknowledged openly. “[The general Paediatrician] hadn’t a clue about albinism. He was asking stupid questions like; “Is her father fair?” so I felt annoyed about that. And he was checking her heart and I didn’t know why he was doing that.” (Parent) “If you’re straightforward and honest to a patient, one thing that is very important, throughout the years I have found - if you don’t know, you say you don’t know. If you’re honest like that with people they don’t expect you to know everything.” (Consultant Obstetrician) 62

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