Methodological challenges associated with sensitive research, such as research with vulnerable families, have been well described, but there are few examples of how such challenges have been addressed in specific projects. To help address this gap, we describe how we designed and conducted a qualitative study of 91 members of 29 families caring for children or young people with life-limiting conditions. Although some issues associated with researching sensitive topics were anticipated, others were encountered that were not expected. We discuss insights gained from this study in relation to factors that influence effectiveness of recruitment, the quality of data collection, and the safety of participants and researchers.
Resolution of the diagnosis of PKU is a strong indicator of parent adjustment, and assessment of parent reactions should be considered an integral component of clinical care. Further research is warranted in relation to the implications of parent resolution for the child's response to PKU through different development stages and the effectiveness of interventions in aiding parent resolution.
This study examines the utility of satisfaction questionnaires in gauging the effectiveness of social work services in a paediatric hospital setting. Participants completed an empowerment scale before seeing a social worker. Approximately four weeks later, participants completed the empowerment scale again, at which time they also completed a satisfaction questionnaire. The difference between the pre- and post-test empowerment scores was compared with the satisfaction scores, and the influence of some demographic and intervention variables was examined. The results indicated that there was no significant relationship between participants' reported level of satisfaction with the social work service provided and the change in participants' empowerment scores before and after intervention. Most demographic and intervention variables tested did not yield any significant associations with satisfaction or change in empowerment. However, it was found that those who received both counselling and practical assistance (rather than only one or the other) and those with a higher level of education were more likely to report an increase in their level of empowerment after receiving social work intervention. This study lends further support to the contention that satisfaction questionnaires alone may not provide reliable information with regard to the utility and effectiveness of paediatric hospital social work intervention.
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