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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 organisational issues, parents understood the pressures that come to bear on professionals. He concluded that it was not inevitable for parents to be dissatisfied with the disclosure process, and set out to prove this theory by introducing in one catchment area an ‘ideal service’ with a Consultant Paediatrician and Specialist Health Visitor trained in a model of good practice developed by the researchers using the existing literature and interviews with parents (Cunningham et al, 1984). A group of 15 families who experienced disclosure through this ‘ideal service’ was studied, against a control group of 25 families in adjacent districts where no additional intervention was introduced. The results showed that no statements of dissatisfaction were expressed by the parents who received the ‘ideal service’. Only 25% of the control group expressed similar levels of satisfaction. This indicates that 75% more parents were dissatisfied in this study, when no specific intervention to provide good practice was present. One particularly interesting aspect of this research is that there was a breakdown in providing the ‘ideal service’ for four families, during a time when the hospital registrars changed and the consultant was on leave. All four families reported dissatisfaction with the disclosure process and one family had their infant fostered. This points to the key importance of developing and communicating written policy and guidelines in locations where disclosure takes place; developing contingency plans for staff turnover or absence; and providing training for all staff that may be involved in sharing the news. The sample size for Cunningham’s study was small and related specifically to the disclosure of diagnosis of Down Syndrome, and therefore a degree of caution needs to be exercised when generalising from the results. However this study provides very useful insights and is considered a seminal report in the area; it was referenced in a very large proportion of subsequent studies on the topic of informing families of their child’s disability. Hasnat and Graves (2000) studied the practice of 26 paediatricians in Australia using Cunningham’s model and identified the possibility that satisfaction in Cunningham’s study may have been associated with the particular Paediatrician giving the news. However, it is clear that the provision of a positive service in the Cunningham study was related to improved satisfaction with disclosure. Other studies support the assertion that dissatisfaction is not inevitable. Sloper and Turner (1993) empirically investigated determinants of parental satisfaction with disclosure of disability and concluded that: Mothers appeared to be able to forgive instances where the disclosure was delayed or the husband or baby were not present, so long as they could understand and accept the reasons for this, and factors such as uncertainty over diagnosis were explained. On the other hand, if they felt that the disclosure was handled unsympathetically or little information had been given, they were likely to be dissatisfied, even if told early. (Sloper and Turner 1993, p 320) The same study found no significant associations between satisfaction and variables internal to mothers, such as personality or coping strategies and concluded: ‘Thus it seems unlikely that dissatisfaction was caused by general factors. Parents appeared to respond specifically to the particular situation’ (p.822). There is some variance of opinion on this matter, however, with Baird et al (2000) attributing significance to parent variables such as levels of maternal depression, but Quine and Pahl (1987) finding no correlation between internal factors of psychology and personality, and levels of parental satisfaction. An Irish study which examined Paediatrician’s disclosure practices, albeit through a study with a small sample size, also points to satisfaction being attributable to the practice applied: ‘Mothers that were not happy with the way they heard about their child’s condition had paediatricians that applied the least amount of guidelines put forward from the policy papers’ (Doran 1999, p.38). Improving levels of satisfaction observed over time (Pearson et al, 1999) further suggest that dissatisfaction with disclosure is not inevitable, and may be improved through the introduction of best practice. 2.5 Elements of best practice identified in the literature Having discussed the importance of the disclosure process, and the evidence to suggest that successful implementation of good practice improves outcomes for parents, it is necessary to examine the elements that define best practice. There is much agreement in the literature on measures that should be taken at the time of disclosure to provide the best outcomes for families. Given the widespread agreement on the principles of good practices (and on many of the specific procedures that should be followed in delivering a diagnosis of disability), two studies have been chosen as the basis to represent an overview of the findings of the literature for the purposes of this report. One set of recommendations comes from an international perspective and one from the Irish viewpoint. These studies were chosen on basis of their clear detailing of best practice in this area, and their relevance to the situations in which informing families of their child’s disability takes place in Ireland. The recommendations from both have been collated in order to present a view of the most commonly quoted best practice. Additional sources from across the literature have been added to further elucidate and clarify the findings of these two reports. 27 2. LITERATURE REVIEW

Informing Families Consultation and Research Report “Right From The Start” (UK) and ERHA ‘Integrated Patient Care’ (IRL) reports: From the international perspective, the Right From the Start (RFTS) group in the UK began investigating and developing best practice for informing families of their child’s disability in 1994. They produced resources for disclosure including an audit tool, a template of best practice and a CD-ROM and video. A key benefit of using the RFTS report in summarising the recommendations is that it specifically references and builds on key studies that evaluated best practice guidelines through research such as Cunningham (1984 and 1994); and Sloper & Turner 1993, which are commonly cited in the existing literature. In addition, this report captures the breadth of the process of informing families of their child’s disability, while many other sources concentrate on one specific aspect of the disclosure process, such as information provision, cultural competence or communication skills, etc. The principles underpinning the Right From the Start Template for good practice (2003) are: ● Valuing the child ● Respecting parents and families ● Preparation ● Tuning in to the parents – effective communication ● Providing practical help and information ● Support for professionals Looking, then, to an Irish perspective on the topic, as mentioned above the former Eastern Regional Health Authority undertook a study entitled Report of the Maternity and Intellectual Disability Review Group on Integrated Patient Care (Doyle, 2004) that examined the way in which parents in the maternity hospitals in the ERHA region are informed of their child’s intellectual disability, and made 23 specific recommendations for best practice. A key benefit of referencing the ERHA report in summarising the recommendations is that it makes reference to the process of informing families of their child’s disability as it relates specifically to the Irish context, such as the manner in which birth notifications are managed, and the disciplines involved in the process in this country. There is much similarity with regard to the recommendations for best practice contained in both reports. The recommendations from the two studies can be categorised for the purposes of this report as follows: ● Setting/Location and People Present at Disclosure ● Communication ● Provision of Information and Support ● Culture and Language ● Referral ● Organisational and Planning Requirements ● Training, Education, and Support for Professionals These categories have emerged through the various phases of research of the Informing Families Project as a useful method to group themes in the disclosure process, and have been used throughout this report for ease of comparison between sources. Recommendations in these categories emerged at each stage of the consultation and research programme, and they allow for a wide-ranging and complex process to be broken into manageable steps. For each category a discussion of relevant themes from across the literature sources is presented, followed by a summary of the recommendations from the ERHA and Right From the Start reports, with additions where necessary from other authors. 2.5.1. Setting/Location and People Present at Disclosure Themes The way in which the news of their child’s disability is first given to parents is remembered clearly, often for many years (Leonard, 1999). Some parents recall the setting, the words and the people present in vivid ‘flashbulb’ detail (Cunningham, 1994). This indicates the importance of creating the best possible environment and conditions for disclosure. Aspects of best practice relating to the setting of disclosure are staples of best practice guidelines that appear throughout the literature. There is unanimous agreement that the news should be given in privacy, with adequate time allowed for questions and without interruptions, and that both parents should be told together. If parents are not told together it creates an additional stress on the parent who already knows and is anxious about their partner being told, and some parents are left to tell their partner themselves (e.g. Doyle, 2004; Downs Syndrome Association, 2006; Girgis & Sanson-Fisher, 1998; Nash, 1995; Phipps & Cuthill, 2002). 28

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