Protection or empowerment: Mental health service users' views on access and consent for non-therapeutic research

• Published in: Journal of mental health (Abingdon, England) Vol. 18; no. 2; pp. 161 - 168
• Main Authors: Ulivi, Gemma, Reilly, Jacquie, Atkinson, Jacqueline M.
• Format: Journal Article
• Language: English
• Published: London Informa UK Ltd 01.04.2009; Taylor & Francis; Informa Healthcare; Taylor & Francis Ltd
• Subjects: Access; Assessment; Attitudes; Biological and medical sciences; Consent; Empowerment; Health services; Human subjects; Informed consent; Medical research; Medical sciences; Mental disorders; Mental health; Mentally ill people; Miscellaneous; Participation; Psychiatrists; Psychology. Psychoanalysis. Psychiatry; Psychopathology. Psychiatry; Qualitative research; service users; Social psychiatry. Ethnopsychiatry; Voluntary organizations; United Kingdom; Europe; Social environment; Human; Participation; User; Accessibility; Attitude; Mental health; Health service; Research; Empowerment; Treatment; Scientific research; Mental disorder; Informed consent; Focus group; service users; Public health
• ISSN: 0963-8237; 1360-0567
• DOI: 10.1080/09638230802053367

Background: The need to ascertain the capacity people with a mental illness have before inviting their participation in non-therapeutic research can lead to a "Catch 22" where those whose capacity is unknown are asked to consent to researchers approaching the person's psychiatrist to find out whether they are able to consent. Aim: To examine service users' views on gaining consent for participation in non-therapeutic research. Method: Two focus groups (with 10 people in each) were carried out in day services for people with a major mental illness. Results: Service users challenged the need for access through their psychiatrist and suggested that approaches through services they used was more appropriate. They also questioned the need for a psychiatrist's assessment of capacity before being sent a questionnaire or invitation, preferring assessment of capacity to take part in qualitative research to come from family or staff in services provided by voluntary organizations which they used. They saw no need for their psychiatrist to be informed of their participation in this type of research. Conclusion: There is a need to re-evaluate how people with a major mental illness are invited to take part in non-therapeutic research, taking account of the views of service users.