Research and recovery: Can patient participation in research promote recovery for people with complex post-traumatic stress disorder, CPTSD?

Abstract

BackgroundA new diagnosis of complex post‐traumatic stress disorder, CPTSD, has been agreed by the World Health Organization, WHO, and evidence is needed for what psychological treatment might be effective, particularly from those with experience of the disorder. We used a novel participatory approach to explore patient views and simultaneously studied the impact on the patient researchers of the research process itself. In this paper, we report on the latter section of the study how the involvement in research of patients with CPTSD affected their mental health. Symptoms of CPTSD may include emotional dysregulation, feelings of self‐worthlessness and difficulties in relationships.ObjectiveThe aim of this study section was to explore whether patients’ mental health could be promoted through empowering them to participate in research on CPTSD.DesignThe study had a qualitative, participatory design. The clinician who led the research (first author) held group meetings with patient researchers to explore the impact of the research process. The clinician also kept notes on the process in a reflective log.Setting and participantsSix patient researchers participated in research with other patients with lived experience of CPTSD in an NHS outpatient unit in a London hospital.Intervention studiedThe research process itself was analysed in group meetings with researchers which the clinician recorded and transcribed.FindingsParticipation in research may promote increased self‐confidence and social inclusion for those with CPTSD.ConclusionInvolvement in research may be seen as an empowering intervention because patients felt it contributed to recovery.