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chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

Recommendations from the

Recommendations from the Literature Informing Families Consultation and Research Report ● Professionals need to be confident, well prepared to share the news, and flexible to adapt to parents’ needs. Staff members need to be aware of the adaptive process that parents will experience. ● The provision of communication skills training should be targeted at all staff members who may potentially be involved in raising a suspicion of a disability. Consideration should be given to the development of a collaborative communications skills training programme which builds staff confidence and improves sensitivity and efficacy. ● Staff members should have time to consult with one another, and prepare individually and as a team prior to consultation with parents. As family circumstances vary, the team should share information on how best to facilitate each family. ● Parental views on the provision of the first information and support should be examined and their views incorporated into any potential training programme. ● Those imparting the news should seek to identify, acknowledge and try to address inequalities between parents and professionals. ● As this can be a distressing area for staff it is important to have two senior members present at the sharing of the news. Appropriate support should be given (identified locally) e.g. debriefing with medical social worker, or other experienced professionals in the field. In the ERHA region weekly meetings between neonatology, ultra-sonography and social work were found to be very helpful. ● Inter-professional practice, mutual support and sharing good practice should be promoted. ● An ethos of continuous quality improvement and auditing of practice should be promoted. 2.5.8. Dissemination of guidelines and best practice Themes In order for best practice guidelines for the disclosure of a child’s disability to be effective in a given location, their introduction must be accompanied by a strong implementation and dissemination strategy. In Cunningham’s ‘ideal service’ which produced positive outcomes for families, a breakdown in the service provided occurred when key staff members were not present, indicating the central importance of documentation and dissemination of good practice to all staff members and contingency plans for staff turn-over or leave (Cunningham, 1994). An audit of a large health authority in the UK that had used the Right from the Start Template (2003) to develop good practice guidelines found that one third of key personnel had no knowledge of the guidelines or the training that had been made available (Fallowfield & Jenkins, 2004). It is important that staff members are consulted and briefed to ensure that the rationale for introducing the guidelines is understood and valued. Initiating change and good practice demands that all of the key personnel involved believe it to be of value and can support their claim. (Cunningham, 1994, p.99) There is significant evidence from Irish reports to show that difficulties occur in providing a seamless transition and continuity of care when parents need to access a range of services that come from different sources (e.g. hospital and community care) or when they require information about onward referral from one service to another (Western Health Board & Brothers of Charity Galway, 2003; South Western Area Health Board & Rush, 2003; Commission on the Status of People with Disabilities, 1996; Redmond, 2000). It is therefore a central requirement of effective dissemination of best practice that all services involved in providing information and care to families in the initial stages of adapting to their child’s disability consult and collaborate with each other in order to provide up to date information and appropriate liaison at the time of disclosure. Recommendations from the Literature ● Interagency collaboration should take place across hospital, community and disability service settings to ensure appropriate information is available to families when they are moving from one service to another, and liaison should take place between agencies to ensure continuity of care during onward referral.* ● Personal and professional development needs in this area should be acknowledged.Training, clinical supervision, continuous professional development and education should be available on an ongoing basis, especially due to high staff turnover. ● The guidelines should form part of hospital orientation or induction. ● Mentoring of junior staff members by senior staff colleagues in relation to disclosing a child’s disability needs to be included. There is broad agreement, therefore, on what constitutes best practice in how families are informed of their child’s disability, across the wide range of themes which constitutes the full disclosure process. Several authors have summarised the specifics from these areas into two overarching themes; the ‘cognitive’ or information sphere of practice, and the ‘affective’ or emotive sphere (Cunningham et al 2002, Quine & Rutter 1994, Sloper & Turner 1993). The rationale for the prioritisation of the information that is provided to parents, and the manner in which it is presented is borne out by the research discussed. 35 2. LITERATURE REVIEW

Informing Families Consultation and Research Report 2.6 Lack of Evaluation One issue which is frequently highlighted in the literature and which is an area for concern, is that there is an almost complete lack of evaluation of training or practice in disclosing disability to families and in communication skills training in general (Cunningham et al, 2002; Fallowfield & Jenkins, 2004; Girgis & Sanson-Fisher, 1998). There has been little evaluation of such guidelines, for example whether they have been implemented, and whether they have an effect in increasing parents’ satisfaction with the way they have been told. (Baird et al 2000, p475) Of course it is difficult to match families and provide control groups for this kind of process. Guidelines have been evaluated by professionals (e.g. Hasnat & Graves, 2000; Dickson et al, 2002) and experience has been evaluated by parents (e.g. Sloper and Turner, 1993; Hatton et al, 2003) but very few studies emerge from the literature which match parental experience and outcomes with specific interventions or practice. In one of the few studies that bring the two perspectives together, Hedov (2002) examines professionals’ clinical goals in Sweden and contrasts these with parental experience. His study finds gaps between the expressed clinical goals and the reality of the practice that families have experienced. In a review of Early Services undertaken in 2003, the South Western Area Health Board concluded that the need for evaluation of practices implemented is of the utmost importance. It states that Early Intervention services should be designed and delivered from a solid foundation of research, which supports and informs evaluation activities. It also includes as part of this early intervention service aspects of the disclosure process identified in the ‘Provision of Information and Support’ category; After diagnosis families should receive an information pack which gives appropriate information on their child’s condition, points to support groups, a description of the range of service options available, and guidance on how to access further support and information. (p.16) The lack of evaluation described above means that existing guidelines have not uniformly been empirically tested for outcomes. It is a recommendation of the Informing Families Project that the implementation of guidelines in the future is accompanied by an evaluation process which provides data leading to evidence-based improvements and clarifications of best practice in this area. 2.7 Barriers to implementation Throughout the literature various authors have identified barriers to the implementation of best practice in how families are informed of their child’s disability. Cunningham (1994) suggests that is it necessary to overcome the myth that that there is no good way to give ‘bad’ news, before professionals will fully engage with changes leading to improved practice. In an Irish study Doyle (2004) demonstrates that there is no single policy or guidance in place currently to support professionals in good practice in this area. In relation to the services provided by the early services team, she recognises the strong role that early intervention will need to play in helping the family to adjust to the news that they have heard; “The early intervention team should direct its attention initially to assisting the family to adjust to its new situation” (Doyle, 2004, p.8). She goes on to indicate that existing difficulties in recruiting staff for early services teams can cause delays which mean that families are placed on waiting lists. Clearly, this will have a negative impact on achieving the objective of providing the support needed for the family to work through the adaptation process following diagnosis. As discussed above Fallowfield and Jenkins (2004) indicate the key importance of overcoming communication barriers within organisations in order to implement good practice in this area, and point to the difficulties experienced in one UK location where the Right from the Start (2003) guidelines were introduced but where evaluation showed that around one third of key professionals were unaware of their existence (Fallowfield & Jenkins, 2004). Abel et al discuss the difficulties that can arise in releasing staff for training; and within a hospital-based training workshop, in having staff members who are on-call during training (Abel et al, 2001).This report also recognises the importance of ensuring that senior staff members receive training, since many training initiatives concentrate on those members of staff still in training and this leaves a gap when more senior staff members who provide mentorship have not received training. All of the above will need to be taken into account when implementing best practice recommendations developed through the current consultation and research project. 36

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