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

• Published in: Health expectations : an international journal of public participation in health care and health policy 2021-05, Vol.24 (S1), p.62-69
• Main Authors: Matheson, Catherine, Weightman, Elizabeth
• Format: Article
• Language: English
• Subjects: Collaboration; complex post‐traumatic stress disorder; CPTSD; Domestic violence; Emotional regulation; Employment; Empowerment; Health services; Human subjects; liberation psychology; Medical diagnosis; Medical research; Medicine, Experimental; Meetings; Mental disorders; Mental health; Minority & ethnic groups; Participation; Participatory research; Patient participation; Patients; Personal development; Post traumatic stress disorder; Primary care; Psychological intervention; Psychologists; Psychology; Psychotherapy; Recovery; Recovery (Medical); refugees; Research design; Researchers; sexual abuse; Social integration; Social interaction; Special Issue on Mental Health; Special Issue Paper; Stress; Trauma; Traumatic stress
• ISSN: 1369-6513; 1369-7625
• DOI: 10.1111/hex.13014

Background A 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. Objective The aim of this study section was to explore whether patients’ mental health could be promoted through empowering them to participate in research on CPTSD. Design The 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 participants Six patient researchers participated in research with other patients with lived experience of CPTSD in an NHS outpatient unit in a London hospital. Intervention studied The research process itself was analysed in group meetings with researchers which the clinician recorded and transcribed. Findings Participation in research may promote increased self‐confidence and social inclusion for those with CPTSD. Conclusion Involvement in research may be seen as an empowering intervention because patients felt it contributed to recovery.