Can people with learning disabilities report their own psychotic symptoms?

People with learning disabilities (PWLD) have an increased risk of developing poor mental health due to social, psychological, economic, emotional and biomedical factors. The identification and correct diagnosis of mental health problems in learning disabled adults is complex and can be highly challenging even for the most experienced clinicians. This complexity is confounded by the lack of validated assessment tools to support an accurate diagnosis. The overall purpose of this research was to develop, implement and evaluate an Easy Read set of psychotic statement sort-cards to assist PWLD, who have suffered from psychosis, in the identification of their individual psychotic symptoms. This research was undertaken in two parts. Study 1 comprised of a series of focus groups with people with learning disabilities. A total of thirty-eight participants participated in five focus groups. The focus groups involved asking the participants to comment on the wording of fifty-four psychotic symptom statements and then to choose from two Widgit symbols that they thought best supported the statement. The aim of the focus groups was to establish the appropriateness of Easy Read information on psychotic symptoms which could be used to develop a sort-card tool. The sort-card tool was utilised within Study 2. In Study 2, a different sample of people with learning disabilities and a diagnosis of psychosis were interviewed using semi-structured interviews that incorporated the Easy Read sort-card tool, to establish if the participants could report their own psychotic symptoms and lived experiences. Study 2 used a qualitative research method, in the form of Interpretative Phenomenological Analysis (IPA) to build an understanding of the participant’s narratives. Nine participants, who were patients of the local Specialist Health Learning Disability Service, elected to participate in the study. This part of the study also employed clinical descriptions of each of the participant’s diagnostic characteristics to relate to the participants reporting. The results of the study revealed that, by introducing an Easy Read psychotic symptom sort-card tool, the participants were able to label and frame their individual experiences and, in doing so, they were empowered to narrate a detailed description of their psychotic symptomology. Armed with a detailed description of their individual symptoms, the participants went on to identify their own timeline of symptoms that manifested within the prodromal and active stages of their psychosis. The most poignant finding was the significant levels of trauma that had been experienced by the participants and the direct impact this had on their mental health resilience. The findings have considerable implications for clinical practice, especially on the education of Learning Disability Nursing, in adopting a formulation approach that lends itself to understanding the individual’s unique experiences, rather than the current service delivery which has traditionally been tied to strict diagnostic criteria.