Lone voices have an emotional content: focussing on mental health service user and carer involvement

• Published in: International journal of health care quality assurance 2011-01, Vol.24 (2), p.164-177
• Main Authors: Hitchen, Sherrie, Watkins, Mary, Williamson, Graham R, Ambury, Susan, Bemrose, Gillian, Cook, David, Taylor, Maureen
• Format: Article
• Language: English
• Subjects: Action research; Caregivers; Carers; Client participation; Collaboration; Communication; Cooperative Behavior; Emotions; Employee empowerment; Employee involvement; Females; Health administration; Health services; Humans; Management of change; Mental health; Mental health care; Mental health services; Mental Health Services - organization & administration; Organizational learning; Participatory action research; Participatory research; Patient Participation; Patients; Planning; Problem solving; Professional ethics; Professional-Patient Relations; Professionals; Quality of Health Care - organization & administration; Researchers; Selfreflection; Statistical analysis
• ISSN: 0952-6862; 1758-6542
• DOI: 10.1108/09526861111105112

Purpose - The purpose of this paper is to describe learning gained from involving service users and carers as researchers in an action research study. The researchers aimed to introduce self-directed support in mental health services - part of the government's personalisation agenda, which requires a move from current social care commissioning, where a person is matched to available services, to one where a person self-assesses, has an agreed support plan and then with appropriate help, purchases his or her own services to lead as independent a life as possible. This development is allied closely with the mental health service recovery approach.Design methodology approach - Three service users and two carers were recruited to work alongside the lead researcher. Service users were fully involved in the steering group - part of participatory action research project. Data were collected from: debriefing meetings with co-researchers between April and December 2007; a group interview held by the lead researcher; and participants' journal comments and self-reflections.Findings - The main areas in which service users and carers found involvement difficult were: overcoming professional language barriers; emotional impact; and power imbalances between themselves and professionals. Findings suggest that considerable improvement is required by mental health professionals and managers if service users and carers are successfully involved in projects.Research limitations implications - This is a small study within a larger action research project. Findings are not generalisable owing to the small sample; however, findings are supported by the service-user involvement literature.Originality value - Few studies explore participation effects on service users and carers from their perspective. This research provides insights into what needs to be addressed to improve service user and carer involvement to improve mental health services.