The recognition, assessment and perceptions of total pain in people with profound intellectual disabilities: A mixed methods systematic review

BackgroundPeople with profound intellectual disabilities are a population with complex comorbidities. Total pain recognises the interconnectedness of aspects of pain; social, psychological, physical, emotional, spiritual. Pain is under-recognised due to communication challenges and carers perceptions. This review's purpose is to synthesise current literature and provide guidance for future research and care. MethodsFive databases were searched in this mixed methods systematic review (Cinahl, Medline, Psycinfo, Web of Science, Scopus). Articles retrieved were reported via a PRISMA flow diagram. Quality appraisal utilised the mixed methods appraisal tool (MMAT). A convergent qualitative design was the method of data synthesis. ResultsData from 16 included articles generated four themes; Absent voices, reductionist assessment, pain intensity, valuing expertise. Data included physical pain only. ConclusionMultifaceted pain needs inclusion in research. Assessment must consider the unique expressions of pain by individuals with profound intellectual disabilities. A sharing of expertise may improve pain care.