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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 A particular difficulty emerged for parents who were given the news without their baby being present – many assumed that the ‘bad news’ they were being prepared for by staff members was the death of their child. “What was unusual was, really there seemed to be some whispering going on in the room. You realise something secretive is happening and although the tension increased, it was about fifteen minutes before the Paediatrician returned. …His behaviour alarmed me. ..He said ‘I’m afraid I have some very bad news for you’. The difficulty we had was that there was no child present, and no reassurance that we had a child.” (Parent) “The baby taken away at birth [for several hours] I couldn’t get any information. I just wanted to know was he alive or dead or safe or what.” (Parent) Similarly, the importance of having both parents present when at all possible was stressed by both parents and professionals.Those parents who had been told alone spoke of the difficulty of having to inform the other parent themselves, while professionals indicated the need to find a trusted family member or friend to accompany a parent when both parents are not available. Some professional groups described their role as being directly responsible for delivering a diagnosis, while a number of other professional groups identified their role as supporting parents when other disciplines have given the news. In the hospital setting the diagnosis is often given by the professional responsible for delivering the official diagnosis (such as a Consultant Paediatrician, or Consultant Obstetrician/Gynaecologist) together with a contact who is familiar to the family such as a Midwife, Paediatric Nurse or Neonatal Nurse. “…especially working on a children’s ward, they know you’re looking after the baby all the time and that you’re there and they get to know you and they’re probably more inclined to ask you questions, as they see the consultant maybe once or twice a week …. but always say did he say this or did he say that, and reinforcing it.” (Paediatric Nurse) Out of the hours of 9am to 5pm, it was indicated through the focus groups that it is often more junior doctors such as Trainee Paediatricians who provide the news to the family. Sometimes it is more difficult at night time to find a colleague to attend and support. “At night time, you feel sometimes you’re going wrong, and there’s other patients to see right now, and its appalling but you’ve no choice. As opposed to during the day when you can give them the bombshell then the Clinical Nurse Specialist comes who has more time generally to come and sit down with them.” (Trainee Paediatrician) In disability service settings there is often an interdisciplinary team who provide the news. It is important that sufficient staff members attend to allow support for both professionals and families while taking to care to ensure that there is not an imbalance of a large team of staff members informing a small family group. If parents wish, it may be appropriate for the team to come to the family home. The importance of giving adequate time to disclosure and sitting down with parents to give the news was recognised by many participants. Some professionals indicated that the pressure of caseloads and the needs of other service users and families creates a conflict of priorities, and adds to their distress as they feel that it is not possible to devote adequate time to supporting the parents. “… you want to be there for one and a half hours, but you only have five minutes that day.” (Member of Multidisciplinary Group) “It’s a crisis driven service, and we’re just involved when there’s a really severe problem, as opposed to being part of the on-going.” (Consultant Psychiatrist) A number of groups specifically mentioned ‘picking up the pieces’ after the news has been given as a central role that they play in the initial disclosure process, while others mentioned reinforcing and clarifying information that has already been presented by other disciplines. “The consequences of poor diagnosis are that you feel other people have let you down… you are having to explain to parents at 5 years what the diagnosis means.” (Speech and Language Therapist) All of the situations outlined above clearly point to the informing of families being a process rather than a single event, and for this process to work, a team based approach is required. It also suggests that the effectiveness of training provided would be increased by providing interdisciplinary training. 55 4. CONSULTATIVE FOCUS GROUPS WITH PARENTS AND PROFESSIONALS

Informing Families Consultation and Research Report Throughout the groups, suggestions made to counteract time pressure included the need to actively manage the breaking of news; to schedule it for periods during the day that allow the most time, to provide a link person who can stay after the diagnosis is given and provide support, and to provide suitable environments for communicating the news that allow for privacy for the parents to stay and absorb the news even if staff members cannot stay. Recommendations: The following section contains concurring recommendations of parents and professionals about the people present and the location for disclosure. These are followed by recommendations made specifically in parents groups and professional groups respectively. Recommendations made by both professional and parent groups: ● The diagnosis should be made verbally (not in writing) and in person (not over the phone) ● The diagnosis should be given in a private room that is: - Quiet - Free from interruptions - Comfortable and user-friendly - Available to the family to spend time in absorbing the news after the consultation - There should be a kettle, tissues, tea and coffee available - Within the hospital setting, private rooms need to be available in both in-patient and out-patient settings - Some professionals indicated that the consultation should not take place in a room that the family will be using again such as the labour ward or scanning room, as this will leave the parents with a negative association with this room for the future. ● The news should be given by a professional who is responsible for delivering and confirming the diagnosis, together with a staff member who is familiar to the family, and who can provide support to the family when the consultation is over. ● Both parents should be present during the consultation if at all possible ● If both parents are not available, a family member or friend should be present to support the parent being told ● If the parents are very young, it may be appropriate to invite extended family members such as grandparents as support for the parents. ● The parents should be given time to hold the baby before and if appropriate during the diagnosis consultation. ● The amount of professionals present should be limited and should not greatly outnumber family members. ● The appointment should not be rushed. Families and professionals agree that informing a family that their child has a disability should be seen as a priority, and consequently adequate time must be allocated. ● A follow up appointment must always be scheduled before the consultation is over so that the family leave with a plan, knowing when they will next have contact with those who provided the diagnosis. It is recommended that this appointment take place very quickly, no longer than a week to ten days after the diagnosis. ● Parents should be left in private to digest the news if they wish, but should be aware that there is support available to them should they wish staff members to remain, and that someone will make contact shortly to see how they are doing. ● Those giving the news should provide a contact number to the family, so that can make contact with questions if they wish. ● Several parents and professionals indicated that they felt it was inappropriate to have very junior or very young staff members present. Recommendations made by parent groups in particular: ● It is important that the parents have seen the baby before the diagnosis is given, if the news is given close to the moment of birth. It is also very important that the parents can see the baby when they are being prepared for difficult news, as several parents indicated that they had been told that there was ‘bad news’ without the baby being present, and had assumed that the child had died. ● Staff members should sit down with the family, preferably beside the family, and not across a desk, when communicating the news. Parents indicated they would prefer a less formal approach. ● If a baby is in the intensive care unit, the parents should be facilitated to visit as soon as possible after the diagnosis is given, including facilitating a mother who herself may be recovering from surgery such as a Caesarean section. ● Care should be taken in the timing of the delivery of news, and the consultation should take place at the appropriate time; taking into account for instance that the mother may be recovering from the birth or surgery. 56

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