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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 liaison person should be assigned to the family to provide support and information from the time of diagnosis until such time as the family are transitioned into appropriate early intervention services. Some of the key aspects of the liaison person role include: - Providing a single point of contact for the family - Providing information to the family on entitlements and benefits, and services and supports available - Providing assistance with paperwork and applications for services, if appropriate - Ensuring that an ‘Informing Families’ checklist is completed and that all tasks relating to best practice in the disclosure process are carried out - Providing a central point of contact to support services and organisations for the supply of up to date information to the interdisciplinary team. - Providing a co-ordinating role within the interdisciplinary team, to ensure that information is shared and that coherent communication takes place with the family, including, if necessary, team conferences with the family. - The liaison person should have appropriate training to understand the needs of parents of children with disabilities - The liaison person was identified as potentially having a key role in disseminating best practice guidelines for informing families of their child’s disability. ● Interdisciplinary team working and strong team communication are important. All team members who may come in contact with the family must have the same picture of what has already been told to the parents, so that families are not inadvertently told new information without adequate preparation. The team providing information to the parents should also liaise to ensure that no conflicting information is presented to the family. ● The initial period following discharge from neonatal care can be a difficult time for the family, and there is a particular need for continuity of care at this time. At a minimum, staff members from the discharging unit should stay in contact with the family by telephone during the first three to five days. ● Written information should be provided between professionals when referring on, detailing what parents have already been told, so that parents are not inadvertently given significant news without adequate preparation. Written information back to the referring party should also keep all parties up to date on the child’s diagnosis; this needs to be sent to the parents, the GP (with parent’s consent) and the referring party. Information should also be written on the child’s chart in the hospital setting, to ensure all team members are kept up to date. ● Families should be offered the option of counselling following diagnosis where appropriate. ● A quality assurance and feedback mechanism should be put in place to evaluate practice in how families are informed. Recommendations made by parent groups in particular: ● Families strongly indicated the need for family-centred services, which included the scheduling of appointments to minimise overnight stays for parents, the co-ordinated scheduling of appointments for families with more than one child receiving services, and the co-ordination of appointments with members of the interdisciplinary team to allow the minimum amount of separate visits possible. ● The child’s history should be shared amongst all members of the team, to avoid parents having to repeatedly provide the same information to different professionals. It was also suggested that care should be taken at staff shift changeover times to alert staff members coming on to shifts that a family has been given the news of their child’s disability. ● Families should be offered the option of private accommodation after being given the news in the maternity setting. Fathers should be facilitated to stay overnight in the maternity setting when the news of a diagnosis of disability has been given to the family. ● Parents should be offered the option of meeting other families whose children have similar diagnoses. Recommendations made by professional focus groups in particular: ● There should be an increase in the amount of Developmental Paediatricians working in the system. Current resource deficits in this area can mean long waiting lists for parents and consequent delays in receiving diagnosis. ● The National Neonatal Transport System should be extended to provide cover on a 24-hour, 7-day basis. ● There should be an increase in the resources provided for psychological and educational assessments, particularly for children from the age of 4 upwards when diagnoses such as ADHD and educational deficits begin to emerge. ● Families should be referred to genetic counselling where appropriate. ● It is important to have a care-plan approach and to ensure that there is someone available on every shift that is capable of supporting parents who have a child diagnosed with a disability. ● Where specialist counselling services are made available, it is important that other staff members do not feel that they should no longer provide support and counselling, and that it is not all left to the specialist service. It is generally not possible to offer specialist services on a 24 hour basis and it is vital that all staff members recognise the importance of their own skills and input in counselling and supporting the family. 69 4. CONSULTATIVE FOCUS GROUPS WITH PARENTS AND PROFESSIONALS

Informing Families Consultation and Research Report ● Some professional groups identified the need to keep fathers involved and fully up to date in the communications loop, indicating that there can be a tendency to focus more on the needs of the mother. Instead a holistic, family approach should be taken, including taking into account the needs of siblings. Summary: It is recommended that the diagnosis should be disclosed using an interdisciplinary team approach; continuity of care is vital – within and between settings, and very particularly in the initial period after discharge from hospital services; a liaison/link person should provide this continuity and co-ordinate the interdisciplinary team response as well as offering direct support to the family; a follow up appointment should be scheduled within 24-48 hours of the initial disclosure to clarify the information provided and answer questions. 4.2.6. Training, Education and Support for Professionals Themes: Focus groups with professionals revealed that the provision of training in communication skills generally, and training for the disclosure of disability in particular, is patchy and inconsistent, and for many disciplines is not present at all. Many of the more experienced professionals participating in the focus groups indicated that they had not received training in breaking difficult news or communications skills while going through formal training, and many had not received any since qualifying. For those participants still in training or more recently qualified there was an inconsistent level of training between and within disciplines, with some having received communications skills training, some having received ‘breaking bad news’ training in relation to palliative care, but very few having received training specific to the delivery of a diagnosis of disability. “I don’t remember getting a minute of training – I suspect the curriculum nowadays does cater for it but I don’t actually know.” (Consultant Obstetrician) “Teaching people how to break bad news needs to be mandatory... and it needs to come at the right time. ..Probably coming at the undergraduate level is not good because you don’t do it every day. Even as an intern, in your first year qualified, you’re not very good at anything for a while, and you probably are not in that situation. But certainly as you move up to your next couple of next levels it becomes more relevant. It’s then that you should have a formalised approach on how to do this.” (Trainee Paediatricians) For those who have been qualified for a long time, it may be assumed that this is an area in which they do not require training or updating of skills. In the absence of existing local or national guidelines, this can leave some professionals unsure of the elements that constitute good practice in disclosure: “One of the reasons I came [to this focus group], apart from sharing what little I have… its - how other people do it, because when you get to be a Consultant, you don’t get to work with any other Consultants and you rarely get to work side by side.” (Consultant Obstetrician) The benefits of implementing training in this area were illustrated by those who had received it: “When I started my job that was the hardest part of my job, the Social Worker taught me that I can’t take the pain away. I had to go away and learn how to do that...to learn to be support, when to say something, when not to say something and to perhaps to learn just to ‘be there’.” (Midwife) “I found that I have improved in delivery of news from parents’ feedback. I think that is something that in some form I would like more of. You would be surprised by the things they say. Parents tell me they never forget the person who tells the news to them. If you come round in your cycle in jobs, two years later, they will immediately remember you as the person [who first told them].” (Trainee Paediatrician) Several groups recommended that feedback from parents was a key element of training required, as were counselling skills. “Training should include counselling courses – we weren’t ‘born’ to be a nurse or a midwife, we need to be trained. You have young girls who have never dealt with it, and without any support. It’s not fair for people to be just landed in it. Like what do I do? What do I say?” (Midwife) 70

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