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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 “…we change from topic to topic every 6 months to a year. It’s very difficult to be, not that we’re expected to be authorities, but to have sufficient knowledge. It comes back to having the most senior person there with the expertise. If you don’t have the right answer you probably shouldn’t be in that situation. It should be someone else.” (Trainee Paediatrician) It was recommended in the focus groups that staff members should encourage parents’ questions, and should not assume any prior knowledge about the disability. “If you stop him and ask him he will explain – he was approachable. He came in and sat down beside us and relaxed. But I think sometimes you need to stop and ask questions because sometimes I think they are so used to speaking with medical people that they just forget, so for the common person coming in its hard for them to explain in our terms, so I think the fact that ‘Peter’ did stop and ask was good.” (Parent) Families strongly made the recommendation that guidance should be provided by professionals on reputable and reliable sources of information on the Internet. Professionals found that the provision of such guidance was a significant support to their own work and decreased the anxiety which can be caused by reading inaccurate information that may not be relevant to the child in question. When discussing the support options that are offered to parents at the time of diagnosis, it was again the theme of supporting individual choice that was recommended. A full range of options, such as contact with Early Services, meeting with other parents, contact with specialist groups for rare syndromes, and support groups were all highlighted as key supports to be provided to families, as long as individual preferences are respected and families are free to choose to take up these options at their own pace. One area that received a good degree of attention was the provision of counselling. Many professionals felt that being able to offer the option counselling in the period after the diagnosis is extremely important and many expressed their frustration at the lack of resources in this regard. Recommendations: Recommendations made by both professional and parent groups: ● Staff members should have available for supplying to parents, accurate, up to date, relevant written material on the diagnosis, on support groups, entitlements and benefits, and on Early Services, to be offered at the end of the initial consultation. ● Up to date information on the support services offered by agencies should be made available to staff members, taking account of staff turnover, as many families have outdated images of the services provided by some agencies, and therefore do not make use of valuable services available to them. A named person in each location should co-ordinate the updating of such information. ● Staff members should provide guidance to parents on reputable and reliable Internet sources of information. This can avoid unnecessary anxiety when parents read information that may not be relevant to their child’s particular case, and is noted by professionals to be of assistance in facilitating parents’ understanding of their child’s diagnosis. ● The amount of information provided should be tailored to the individual parent’s needs - avoiding information overload for parents who may feel overwhelmed, and meeting the information needs of parents who seek further detail. ● Parents should be kept up to date at all times. This includes acknowledging any uncertainty that exists about the diagnosis, and explaining any suspected diagnoses that are being investigated. There should never be a large gap between what professionals know about the diagnosis and what parents are made aware of. ● All tests and procedures should be carefully explained to parents. ● Parents should receive copies of all correspondence between professionals relating to their child’s diagnosis. ● The option of counselling should be made available to families following the diagnosis if appropriate. Recommendations made by parent groups in particular: ● Information on support groups for specific syndromes is particularly important to parents and should be provided when at all possible. Where support groups do not exist in Ireland, contact with UK groups should be investigated and facilitated. ● The option to be introduced to other parents should be offered, as this can provide significant support. ● Parents should be given a written summary of the consultation. (Many professionals also made this recommendation, and others felt that it was not realistic from a time perspective, or had anxieties about the implications for litigation of providing this information). ● Parents indicated that a litany of all possible negative implications of the diagnosis should not be given. It was felt that sometimes the worst case scenario can be presented, rather than the most accurate realistic picture. Parents felt that the tendency towards providing the worst case scenario may be augmented by a fear of litigation on the part of the professional. 63 4. CONSULTATIVE FOCUS GROUPS WITH PARENTS AND PROFESSIONALS

Informing Families Consultation and Research Report ● A sizeable proportion of the parents participating in the focus groups felt that they had been given too much information at the first consultation and that ‘information overload’ at an early stage needs to be avoided. ● Parents of children with intellectual disability recommended that the What do I do Now? booklet should be given to the family as soon as possible following the diagnosis. Recommendations made by professional focus groups in particular: ● Directories of catchment areas should be developed in all regions, as there is currently a lot of confusion and wasted time while professionals try to ascertain the correct services catering for each child. ● Staff members requested a single source of information that collates the services available. Currently there are multiple pieces of information including flyers, websites, booklets etc. from various services provided and this does not allow for clear details to be presented to parents. ● It is very important that all professionals have access to up to date information on support groups – currently this is not always the case so that parents may be trying to make contact with support services that no longer exist. ● Information on disability services should made available through mainstream sources such as telephone books and parenting websites such as ‘EUMOM.com’ so that parents do not feel singled out when accessing this information. ● When possible it is very positive to provide information to parents about concerns before birth, as this allows parents time to prepare and come to terms with the information provided before their baby is born. ● Obstetricians and Gynaecologists, Ultrasonographers, and Midwives indicated the importance of explaining the purpose and scope of antenatal ultrasound scanning to parents ahead of the scan, so that there are not unrealistic expectations of what will be identified through the scan, and that if the scan is not an anomaly scan that parents will understand this. Currently staff members from these disciplines indicated that there is an expectation that the scan shows that the ‘baby is ok’, which may not necessarily be the case. Summary: It is recommended that the family should be kept up to date at all times; there should be co-ordinated availability of accurate, up to date information for parents and professionals; with written material provided on benefits and entitlements, support groups, and early intervention services. Parents’ individual needs regarding how much information should be provided and at what pace, should be taken into account when communicating. 4.2.4. Culture and language Themes: Professionals from Early Services teams and those working in community and hospital settings indicated that families who have come from other countries now constitute a large portion of their caseload. Some professionals indicated that 40 to 45% of their caseload may now be made up of families from countries other than Ireland, whilst others had not encountered quite so high levels of diversity. Professionals noted that many families are English-speaking (or have a member with a high level of English proficiency), and others are not. Written information in languages other than English does not appear to be widely available. “Practically everything we have to hand out to patients is in the English language and we do not have access to translated versions…. I don’t know how we deal with that.” (Consultant Obstetrician) Several parent and professional groups pointed out that there are many professionals who are not native English speakers and that this can pose issues for families who may have difficulty in understanding what is being said. Some parents requested that in this case the family should be offered the option of having a support professional present to assist in explaining what has been said. Different disciplines reported varying levels of satisfaction with interpretation services available. Some professionals only had access only to ‘a disembodied voice’ through telephone interpretation services, and stressed the inadequacy of this situation, while other professionals felt that there were adequate services available. From the information reported in the focus groups it would seem that there is a difference in availability of interpretive services depending on region; with interpretation services readily available in some areas, and to some disciplines, but difficult to access and only available over the phone in other areas. The importance of using professional interpreters and not family members or friends came across clearly, although there were areas where family members took on the role of interpreter. A number of groups have alluded to cases where one member of the family (particularly the father in some cultures) speaks English and interprets for other members of the family who do not. 64

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