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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 4. What are the support and training needs of professionals involved in informing families? The survey fount that a sizeable majority (79.8%) of respondents indicated that they were unaware of any guidelines already in place that dealt with the practice of informing families of their child’s disability. Our data are congruent with the findings of the ERHA study in 2004, which found that there was an absence of consistent policy or structure to guide professionals who inform families of their child’s disability (Doyle, 2004). Professionals, particularly in the focus groups, pointed to an absence of training in how to inform families of their child’s disability leaving them to resort to a ‘trial and error’ process. Professionals still in training indicated that the structure of shift work means that trainee doctors are responsible at particular times (generally during the night) for providing the initial news of a concern to parents, and that there is a need for further support and training to ensure that those delivering the news feel confident to do so and in order for parents to receive optimum support. In addition the suggestion brought up by trainees during the focus groups that there can be a problem accessing debriefing, was reinforced by the professional questionnaire’s finding that for approximately three quarters of staff members involved, no formal debriefing structures were in place. Through the professional questionnaire a sizeable majority of respondents indicated the relevance of training in a number of key areas, reinforcing the information provided through the focus groups. Over 80% of respondents indicated the relevance of training in breaking difficult news; informing families of their child’s disability; disability awareness; and adaptive/bereavement training. An even larger majority, (93%) indicated that they felt communication skills training was relevant to their post. It is interesting to note that the questions regarding training elicited some of the highest response rates seen in the professional questionnaire, thus indicating the importance of this topic to the respondents. Professionals who participated in the focus groups frequently referred to the increase in cultural diversity in Irish society and their corresponding need for training to guide them in providing culturally competent care. This is in keeping with findings in the UK, where 84% of nurses indicated that they would welcome further education to meet the cultural needs of their patients (Narayanasamy, 2003). Parents, too, recognised the importance of training and indicated in the focus group consultation that they felt there was a need for those undertaking the disclosure consultation to be provided with appropriate training, as long as it is sensitively managed and does not impact on the disclosure process. Parents and professionals alike indicated the importance of including input from parents in the development and delivery of training. What is very clear from the results of the study in relation to the training and support needs of those who are involved in the disclosure of a child’s disability, is that professionals would welcome evidence-based guidance for best practice in this area, and are cognisant of the emotional challenges inherent in the process, and professionals have suggested that supports, including debriefing and supervisory support as well as practical resources such as appropriate information and environments in which to communicate the news, are required urgently. 5. Validation of international best practice recommendations for the Irish context Best practice recommendations came from a collation of the results of the literature review combined with findings the focus groups, a concise form of which was then subject to the rating of parents and professionals in the national questionnaire survey. A high level of agreement was apparent between the recommendations of parents and professionals made through the strands of research and consultation undertaken in this study. The recommendations which were validated through the national questionnaire survey had emerged from the literature and the focus group consultation. Overall, 45 of 46 of these recommendations received majority agreement from parents while 44 of 46 received majority agreement from professionals. The sole recommendation to which parents indicated either ‘Agree’ or ‘Strongly Agree’ in the majority of cases (64.7%) but professionals only indicated 37.4% agreement was the suggestion that “No extra staff are present for training purposes”. This difference in opinion indicates that the provision of training will need to be very carefully managed to ensure that it remains sensitive to the needs and wishes of parents. The suggestions provided in the focus groups with professionals included a graduated introduction for trainees to the practice of informing families; providing opportunities for role-play training; and ensuring that any professional who is present for training also has a specific role in providing care to the family, rather than being an unknown presence for the family. 145 6. COLLATION AND ANALYSIS OF RESULTS

Informing Families Consultation and Research Report Presence of the child The only recommendation which was not ‘Agreed’ or ‘Strongly Agreed’ with by the majority of respondents was the suggestion that the child should be present. From the focus groups, however, we have seen that there is a clarification to be made between the presence of the baby when the disclosure happens close to birth, and the presence of a child at a later time. Parents and professionals describe the key importance of the baby being present for bonding close to the moment of birth, so that the parents have an opportunity to see and know their child first and see the disability as secondary thus facilitating bonding. Furthermore significant distress can be caused by warning parents that there is adverse news when they cannot see their child in a hospital setting, as they may believe the child to have died or may be afraid to see the child if they have not yet had that opportunity. On the other hand, parents also explained that it is very difficult to manage the emotions that may come to the fore when given the news of a child’s disability if the child is present and the parents feel responsible for holding in their feelings and maintaining a sense of calm for the child. Our findings of a split of opinions when asked the question of whether the child should be present, match with the literature; in which Pearson et al (1990) found that the presence of the child was found to by 58% of parents to be useful, 10% said that it made no difference, and 30% said it was not helpful. They also match with the recommendations of the Right From the Start Group, which indicate that ‘Consideration should be given to the presence of an older child’ (p.3). In summary, the recommendation of the Informing Families Project is that the baby should be present when disclosure happens close to birth so that families have time to bond and in any in-patient hospital situation where parents need to be reassured that the child is alive. It is not recommended that the child should be present for diagnoses that come later, so that the parents have an opportunity to absorb the news and express their emotions at the time of disclosure. It should be noted that when presenting the recommendations in the national questionnaire survey, it was not possible to provide the same detail as was reported in the literature review and focus group results, due to space and layout requirements of a questionnaire format. It was therefore necessary to prioritise the most important recommendations for inclusion in the questionnaires. The result was a very clear validation of the elements put forward. The final version of the Guidelines takes the pared-down elements from the questionnaires and further elaborates and informs them through the literature and focus group sources. The text captured through the open questions in the parent and professional questionnaires merits further, separate analysis and it is therefore not discussed here. However, it is noted that many of the themes emerging from this text are in line with those found in the Informing Families focus groups. 6.2 Validity of the findings The methodology of the Informing Families Project was developed with the aim of producing National Best Practice Guidelines that are evidence-based and informed by the input of key stakeholders through comprehensive consultation. In so doing the study triangulates multiple data sources, i.e. the literature, the consultative focus groups, and the national questionnaire survey, to define its final recommendations. The research design of the parent questionnaires used the most representative sample of the national population of children of the selected age group with disabilities that could be managed within the ethical constraints of causing no harm to potential participants. The study used population figures broken down into specific service providers from the National Intellectual Disability Database (NIDD), and indicative sample sizes for physical and sensory disabilities from the relevant national service providers. The Health Research Board has indicated that the estimated coverage for the NIDD was 95% in 2005, the year from which the questionnaire sample was determined. The level of confidence that the sample was representative is therefore relatively high. The response rate to the parent questionnaire was 31.5%, which is in keeping with similar postal questionnaires related to this topic, ranging from 27 - 33% (Down’s Syndrome Association, 2006; Sharp et al, 1992; Pickering et al, 2004; Ormond et al, 2003). There are a number of areas of concern relating to limitations of the findings reported in this study. The focus group and survey results provide a picture of how the diagnosis is given in Ireland as related by families of mostly English and Irish speaking families due to the ethical constraints of the methodological design, which did not allow secondary follow-up with specific families to pro-actively offer support such as interpretation. The parent questionnaires were filled out by mostly mothers, with a smaller number of fathers responding. This is a finding which matches with numerous previous studies (Herbert, 1995). To 146

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