By Sharon Millard Ph.D., Research Lead, The Michael Palin Centre, London
The Palin Parent Rating Scale (Palin PRS) is the result of collaborative research which involved clinicians, researchers and parents of children who stutter, using a mixed methods approach to research. It grew out of a clinical need to evaluate children’s stuttering in terms of its frequency and severity outside the clinic, but also in relation to the impact that it has on the child. Parents see this over a wider range of contexts than the clinician and have a deeper understanding about how the child is affected both in the moment of stuttering and more broadly. So having a measure that can be used to gather parents’ perspectives was considered to be a useful adjunct to current assessment tools.
The Palin PRS was developed using a systematic, structured approach known as a Delphi technique. Parents who had attended the Michael Palin Centre for therapy over a twelve month period were invited to participate. We held a focus group of parents to decide on and trial a question to ask other parents about what “is important to include in a therapy outcome tool,” i.e. what are important outcomes that parents wanted to see happen as part of therapy. We then sent the question to all of the parents and asked them to write a list of changes that they considered to be important. This gave us a list of 129 statements which were then categorised and reduced by removing those that overlapped. Parents were then asked to rate how important it was that each statement should be included into a measure to evaluate outcomes for therapy. The researchers analysed the responses to find out which were considered to be the most important by the majority of the respondents. It was those that the majority gave the highest ratings to that were retained, i.e. those with greatest consensus.
What we found was that parents wanted to see changes in the child’s level of fluency but also a reduction in the negative reactions to stuttering and the impact that it had on the child’s communication. The parents also listed a number of statements that referred to changes they wanted to see in themselves, such as a reduction in their own anxiety and an increase in their knowledge of what to do and how to help and support their child. These findings support what we know about stuttering as a difficulty that has a wide impact, not just on the child but on the family as a whole, particularly parents. It supported the use of therapy approaches that involve parents in the process, that take account of their needs and worries and support them to help their child. The questionnaire that resulted consisted of 26 statements, and we used this for some years to help identify targets for therapy and to evaluate the effectiveness of our therapy both for clinical and research purposes.
But there were some limitations with this original version in terms of the scientific merits of the questionnaire and so we collaborated with Dr. Steve Davis, University College London, to improve it further. Statistical analysis of the content of the original questionnaire showed that there were some items that were redundant and that there were three components to the assessment. The final version has 19 statements for parents to rate which relate to their perceptions of 1) the frequency and severity of the child’s stuttering; 2) the impact the stuttering has on the child; 3) the impact that the stuttering has on the parents and the parents’ knowledge and confidence in managing the stuttering. The most recent, exciting and final metamorphosis for the Palin PRS is that it has been developed into a free on-line tool that can be completed by parents by Dr. Steve Bennett, Dept. of Psychology, London School of Economics. The on-line version provides scores (normative, stanine and categorical) that can be used by clinicians and researchers as part of the assessment of childhood stuttering and to investigate the effectiveness of therapy.
Details of the research methods and results are being prepared for peer-review, but researchers and clinicians who would like to use the Palin PRS with parents are invited to register to use the tool at https://secure.psych.lse.ac.uk/Palin_Parent_Rating_Scales/pprs_connect.php
From the Fall 2013 Newsletter