Life Pre-intermediate Workbook

[Jacinto Man]

MorganM, Kenten C, Deedat S, et al. Increasing the acceptability and rates of organ donation among minority ethnic groups: a programme of observational and evaluative research on Donation, Transplantation and Ethnicity (DonaTE). Southampton (UK): NIHR Journals Library; 2016 Mar. (Programme Grants for Applied Research, No. 4.4.)

To develop and undertake a pilot evaluation of the training package designed to increase the confidence and skills of ICU staff in communicating with patients and families from different cultural groups.

The TPB constructs form a set of cross-cutting themes that framed the content of each of the five DonaTE dimensions and targeted attitudes, beliefs about social norms and self-efficacy in managing the manifestations of each dimension.

There were many strong examples for all dimensions that could not be included owing to time constraints. However, the final content was viewed as conveying the practicalities, and, importantly, the care with which the consultants and nurses support families at times of acute bereavement, and also recognised that choices about organ donation are rarely a simple or easy decision for families to make.

Having developed our approach to the training intervention we produced a detailed storyboard that aimed to have clear messages. Following interviews we selected a production company with previous experience of working with academics to produce DVDs for dissemination, training and teaching.

The company and the research team worked together on further development of the storyboard, with a key challenge being to simplify messages while retaining intended meanings. The research team also had at least one member present during recordings which enabled us to observe the potential content, and if necessary adjust questions asked of talking heads. The DonaTE team then reviewed the interview material and first edited line by line and made suggestions for material to be included, as well as discussing the content and key messages with the director to ensure that the edited content reflected our intended messages. We also invited several health-care professionals and members of the public with experience of transplantation or end-of-life care to view an early edit of the DVD and provide any comments, with these contributing to the final version.

In practice, it was very difficult to recruit participants, particularly as educational sessions had been cut back and duty nursing staff are often engaged in one-to-one care and then go directly home at the end of their shift. The unpredictable demands of ICUs also presented difficulties, and on several occasions we had arranged a session and turned up at the ICU only to find all the staff were occupied by an emergency. Staff were also sometimes bleeped and had to leave midway through the session. However, for the future, the aim is for the package to form part of ICU training when it will be feasible to show and discuss both the main video and family drama, and undertake exercises in the workbook.

Negative comments mainly related to the length of time required to complete the baseline TPB questionnaire and what was seen by some as the confusing mix of positive and negative statements in this questionnaire. However, some nurses indicated that they would have liked a longer training session, which is envisaged when the full package is employed.

In summary, feedback ratings were high for relevance, usefulness and clear presentation by all professional groups. Nurses also commented that it filled an important gap for them, and both SNODs and doctors commented on its value for training.

Development of the TPB questionnaire for the evaluation followed the manual for TPB questionnaire construction.120 This requires that the four constructs of attitudes, subjective norms, perceived behavioural change and behavioural intentions are populated with questions of relevance for the study, with each question using a 7-item Likert scale (Appendix 12).

The intervention sample comprised 58 bedside nurses, 22 doctors, of whom half were consultants, and 19 SNODs (Table 12). On average the SNODs had spent the greatest time working on an ICU and bedside nurses the least. Altogether 57 were of all forms of Christian faith, with small numbers of other faiths, 14 were agnostic/atheist or Pagan and 20 did not identify a religion or faith. There was also a mix of ethnicities and people born in UK or abroad, particularly among bedside nurses (see Table 12).

For both bedside nurses and doctors, the only significant change following training was in attitudes towards seeking organ donation from individuals from minority ethnic communities, with both professional groups being more positive in their attitudes following training.

Attitudes towards organ donation and the subjective norm components were predictive of intention to seek consent for organ donation, which further suggests that the impact on practices may increase over time.

Simple differences in proportions were calculated to summarise the changes in rates pre and post intervention in the different regions and ethnic groups. A mixed-effects model was employed to estimate the effect of the intervention while allowing for regression to the mean (intervention vs. control regions) and ethnicity. For this analysis we fitted normal errors two-level regression models to the proportion approached and the proportion that gave consent. The distribution of the residuals was confirmed to be normal. Region fitted as a random effect and time period (pre/post intervention), ethnicity (white/BAME) and intervention/control were modelled as fixed effects. An interaction test was used to determine whether or not there was a difference in the time period effect by ethnic group. Results are presented as difference in proportions (as percentages) with 95% confidence intervals (CIs).

The numbers of eligible donors and families approached decreased slightly between the pre- and the post- intervention periods for both the white and BAME populations, whereas the consent rate among those approached increased, with the increase being particularly large for the BAME population [(11 percentage points increase in consent compared with nearly 7 percentage points among the white population (Table 14)].

We believe the observed similarity of consent rates in the intervention and control groups among the BAME might have been partly explained by contamination of the control sites, given the considerable movement of SNODs between study sites and our presenting the DonaTE project at regional meetings of SNODs. In addition, a number of local initiatives focusing on increasing donation rates among the BAME community were taking place at hospitals across the study regions.

Piloting of the intervention was limited to the main DVD together with a brief introduction by the facilitator to the training package at the beginning and a short discussion at the end. This limited version was used, as it was necessary to complete consent forms and baseline questionnaires plus the training and feedback within the 1-hour slots available.

Our interim findings based on this limited version indicate that the training package is acceptable and useful to ICU staff and that when fully implemented is likely to impact on staff practices and to be associated with significantly increased donation rates among the BAME families. However, our experience emphasises the difficulties of evaluation that often occur in a real-world situation, reflecting the combination of time constraints, staff changes and low returns of follow-up questionnaires, contamination between intervention and control groups, and the effects of external influences such as other BAME activities. For the future, further evaluation should be undertaken with the full package.

Although the training package was designed for bedside nurses there has been considerable interest in its use by hospital chaplains as part of the development in their professional training. Several community organisations have also asked to include the main DVD in their discussions of organ donation to inform their audience about donation and transplantation, and emphasised the value for recipients, particularly in addressing community issues of trust in health professionals and the health system. We expect use by different audiences will increase following its availability on the National Institute for Health Research (NIHR) YouTube (YouTube, LLC, San Bruno, CA, USA) website at (www.youtube.com/watch?v=ueaR6XYkeVM&feature=youtu.be).

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