Implementation of an Urdu version of the paediatric pain profile, a pain assessment tool for children with severe and complex disability: an evaluation using mixed methods

Abstract

Pain assessment in children with severe and complex disability relies upon carers' recognition of children's pain cues. The Paedialric Pain Profile (PPP) is a pain assessment tool specifically developed for this population of children.
The PPP was evaluated for its acceptability and feasibility as a parent held record across several Primary Care Trusts in the Midlands. A proportion of families came from minority ethnic communities and could not read or speak English. The tool was translated into Urdu using parallel forward and back translation, and this version was piloted.
In order to introduce the tool to the families they were visited by the researcher and each family's choice of interpreter, this being their Urdu speaking key worker. Seven Urdu speaking families were recruited. Following informed consent a pre-implementation questionnaire was completed and the baseline pain and PPP scores established. A way that the family could use the tool was discussed. After a period of 8-12 months a post-implementation questionnaire was completed by four of the seven families. These four families also provided feedback in their own language on their views of the tool and how they and professionals used the tool through taped interviews which were then translated into English and analysed thematically.
Each of the four families found the tool easy to use and useful in their pain assessment of their children. They all wished to continue using the tool after the research had finished. Thematic analysis of interview transcripts suggests that the portability of the PPP relies upon the packaging becoming user-friendly. Having the tool did not guarantee effective communication between parents and professionals. Some parents expressed a sense of empowerment in their recognition of their child's pain cues and increased sense of knowing their child and would recommend the tool to others.
Although parents felt that some of the key professionals caring for their child did not engage with the tool, parents felt empowered by it and would recommend it to others. Further research is needed to explore the validity and reliability of the Urdu version. Educational development of healthcare professionals involved with these families is required to sustain and increase the use of the tool and enhance pain assessment more generally in these and other settings.