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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 Given the critical nature of the disclosure process, it was important for the current study to establish how families in Ireland are informed of their child’s disability. The findings of the national parent questionnaire survey detailed the disclosure experiences of families whose children: ● Have physical, sensory, intellectual or multiple disabilities or autistic spectrum disorders ● With disabilities ranging in severity from mild to moderate, severe and profound ● Where the children were aged between two and a half years and 11 years at the time of responding ● And when the parents had received their child’s diagnosis in hospital, disability and community service settings The findings of the focus groups and national questionnaire survey of parents and professionals clearly indicated that in Ireland there are professionals from many disciplines and experience levels, working in many different service settings, who first inform families that their child has a disability, or provide support during the process of this disclosure. The data gathered from the various consultation and research strands confirmed the involvement of professionals: ● From hospital, community, and disability service settings ● Working across medical, nursing and allied health professional fields ● Whose levels of experience range from newly qualified to having over 35 years of experience ● And whose frequency of involvement ranges from less than once per year to over 35 times per year. When the breadth of service settings and disciplines involved in informing families of their child’s disability is considered, it is likely that this distribution of responsibility contributes considerably to the lack of consistent practice which was previously identified in the Irish literature (Redmond, 2000; Doyle, 2004), and was evidenced by the range of positive and negative experiences reported in the focus groups undertaken for this study. The dispersion of the disclosure process through many service settings, disciplines and experience levels of professionals strongly indicates the need for a coordinated approach to ensure consistency in the implementation of practices which lead to positive experiences. A key finding from the professional questionnaire survey; and an important consideration in the dissemination of best practice guidelines for informing families of their child’s disability, is that many of the professionals who inform families of their child’s disability undertake this work only very occasionally. Perhaps it is not surprising; therefore, that there may be difficulties for some professionals in disclosing the news of a disability, when this is not a routine part of everyday work. Therefore it is essential that such staff have access to the Guidelines in order to act as a valuable resource for practice when faced with the situation of disclosure without significant training or experience in the area. Satisfaction with disclosure The literature relating to informing families of their child’s disability reports varying levels of satisfaction with the process, with some parents very satisfied and others very dissatisfied within each study. Although Cunningham et al (1984) reported very high levels of parental satisfaction when they had experienced disclosure following the introduction of an ‘ideal service’, this involved a very small sample and specifically related to the diagnosis of Down Syndrome. Methodological variation between studies makes meaningful comparison of results problematic and the measurement of satisfaction as a concept complex. For example, some studies did not provide a ‘Neither Satisfied Nor Dissatisfied’ option, whilst others collapsed this option with the ‘Dissatisfied’ responses and reported it is a whole. Other studies examined parental levels of satisfaction with individual elements of practice, such as the provision of information (Hedov, 2002) or communication skills (Sharp, 1992) rather than reporting overall satisfaction. However, in order to put our findings in context some comparison with international experiences is required. The Informing Families study found that 36.4% of parents were either ‘Satisfied’ or ‘Very Satisfied’ with how they had been first informed. This is encouraging, as rates of 35% (Quine & Pahl, 1987), and 36.9% (Sloper & Turner,1993) have been reported elsewhere. What is most encouraging, however, is that the levels of dissatisfaction found in the current study are significantly lower than those reported in previous studies. The parent questionnaire found that 27.2% of parents in the current study were ‘Dissatisfied’, or ‘Very Dissatisfied’ with how they had been first informed of their child’s disability, and 23.9% were ‘Neither Satisfied nor Dissatisfied’. Sloper and Turner (1993) reported 51.5% of parents as being ‘Dissatisfied’ or ‘Very Dissatisfied’, and 11.7% being ‘Neither Satisfied nor Dissatisfied’. Quine and Pahl (1987) reported 60% of parents as being ‘Dissatisfied’ with just 5% being ‘Neutral’. 141 6. COLLATION AND ANALYSIS OF RESULTS

Informing Families Consultation and Research Report Our results demonstrate that there is a basis for good practice already in place in Ireland with many parents experiencing the disclosure process in a supported way, and many professionals currently employing appropriate strategies to ensure that parents receive the news in the best way possible. However, data from both the focus groups and the national questionnaire survey found that there were parents who expressed significant levels of dissatisfaction with how they were told, and professionals who expressed an urgent need for further support and training to assist in the application of best practice. These results clearly demonstrated that when there are deficits in practice the consequences for parental distress can be significant, and when professionals do not feel adequately trained or supported, it increases the stressful nature of the emotionally challenging task of communicating difficult news. Clearly then, there is a strong rationale for implementing guidelines that aim to ensure a more consistent approach to supporting parents and professionals. 2. What is currently working well in how families are informed in Ireland? The national questionnaire survey of parents and professionals found that in many respects a good foundation of current practice exists on which to build improvements. The results showed that parents are being informed in person rather than on the phone or in writing almost without exception, and this is welcomed. The majority of parents in the questionnaire survey found that in communicating the news, professionals were empathetic, respectful and direct, and this was reinforced by the findings of the professional questionnaire. Parents in the majority of cases were given the news in a private environment, were given an opportunity to ask questions, and had next steps such as tests to be undertaken explained. Professionals who took part in the focus group consultation indicated that the team approach is an aspect of current practice that works very well. Examples include Midwives/Ultrasonographers raising concerns during obstetric ultrasounds that are then followed up and confirmed by the Consultant Obstetrician/Gynaecologist; and inter-disciplinary or multi-disciplinary team assessments in Early Services which involve a range of team members such as Psychologists; Social Workers; Physiotherapists; Speech and Language Therapists, etc., and include parents as part of the team. There were significant benefits reported when Clinical Nurse Specialists or other team members were available to take on the role of liaising between internal and external teams on behalf of the family. The common feature of practice where the team approach is working well was good communication between team members leading to coherent and integrated communication with parents. 3. What areas of the current process do families and professionals feel need improvement? There were several areas for improvement that were raised consistently throughout the research and consultation strands of the project. Parents and professionals who indicated the need for improvements commented specifically on inappropriate physical environments in which the news is delivered, an absence of liaison between services, inappropriate communication, and inconsistent provision of comprehensive, accurate and up to date information, as the areas requiring the most urgent attention. Location for disclosure The focus groups with parents demonstrated that great significance was attached to the actual room, corridor, ward or other location in which the news had been communicated. Parents recalling their diagnosis from over thirty years previously could still vividly remember where they had been told.A wide range of environments in which disclosure first took place was identified in the questionnaire survey, with varying levels of comfort, privacy and a sense of welcoming being reported. Given the significance with which parents remember the location of the disclosure, the findings of the consultation and research suggest that it is paramount that planning and consideration be given to the locations available in each local setting when potentially distressing news is being given, so that privacy can be ensured and settings can be made as comfortable and welcoming as possible. Although 71.2% of families received the news in a private environment, the impact for those who did not was significant. In particular, parents in the focus groups indicated the need for parents who receive the news in maternity hospital to be given the option of accommodation on their own, with the opportunity for their partner to stay overnight if possible. Communication While the majority of parents in the questionnaire survey found that professionals were empathetic, respectful, and direct in communicating the news, the literature suggests that there is a significant impact for the minority who were not satisfied with the manner in which the news is given (Sloper and Turner, 1993). Parents who attended the focus groups and who felt that the news was given in a blunt or insensitive way reported experiencing considerable distress regarding how they had been told, 142

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