The INFORM Project: A Service User-Led Research Endeavor

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Effective engagement with people who experience mental health care services, as research participants and as research leads, is presented. A group of volunteer mental health survivors, called INFORM, worked for 6 years to develop and complete a research project, exploring service user experience of a home treatment and crisis resolution service. Within the article, discussion is given to the significance of service continuity, alongside personal accounts of the impact and consequences of health care staff's interpersonal interactions. Two contrasting messages arise from this study: first, the articulation of what services users want from services, and how that relates to what they actually receive, continues to be a necessary debate and issue for consideration at a time of considerable health care reform. The second message is that such articulation, although necessary, is not sufficient in itself to ensure that services are responsive to service user needs and preferences. Findings from the evaluation are consistent with other service user-led research. However, what is also evident is that more work is required in enabling health care consumers to provide feedback that can then be used to inform practice and service delivery improvement.

Section snippets

User-Led Research

There are many levels of service user involvement in research, from service users being briefly consulted about particular aspects of a research project through to research that is led, carried out, and managed at all stages by service users in relation to mental health (Johnson et al., 2004). User involvement can involve contention and anxiety for all concerned as it necessitates a shift in the balance of relationships between, among others, “professional” researchers, service providers, and

The INFORM project

The Access to Mental Health Services Team (AT) was first introduced in April 2001 to provide a 24-hour crisis resolution and home treatment service. The team consisted of a consultant psychiatrist, an associate specialist doctor, qualified nurses, outreach workers, a senior occupational therapist, a senior social worker, a pharmacist, an office manager, and a small administrative team. The AT offered an initial assessment of needs, after which some service users would be allocated for “home

Findings

Of those invited (392), 65 people initially responded, and of these 49 provided detailed information about their experiences (13%). One respondent described two distinct and separate referrals to the AT during the period surveyed, and these were treated as separate responses. Nineteen people agreed to face-to-face interviews, 11 of whom also completed the postal survey questionnaires. Fourteen chose telephone interviews, whereas 17 people chose to respond by completing the questionnaire only,

Discussion

Our findings reflect two themes that are dominant in the literature on users' experiences of mental health services. The importance of good communication recurs over and again throughout the literature (Bee et al., 2008, Bramesfeld et al., 2007, Buszewicz et al., 2006, Campbell et al., 2007, Crow et al., 2002, Eales et al., 2006, Kai and Crosland, 2001, Mental Health Foundation / Sainsbury Centre for Mental Health, 2002, Nolan and Badger, 2005, Pinfold et al., 2005, Rogers et al., 1993, Rose,

Acknowledgment

The authors acknowledge all the INFORM members who contributed to the research endeavor, all respondents who willingly gave permission for their experiences to be shared to further inform mental health care services, and the A Team staff who initiated and provided funding to achieve the first user-led research in the locality.

References (41)

  • M. Buszewicz et al.

    Patients' experiences of GP consultations for psychological problems: A qualitative study

    British Journal of General Practice

    (2006)
  • S. Campbell et al.

    Identifying the patient perspective of the quality of mental healthcare for common chronic problems: A qualitative study

    Chronic Illness

    (2007)
  • D. Crane-Ross et al.

    Consumer and case manager perspectives of service empowerment: Relationship to mental health recovery

    Journal of Behavioural Health Services and Research

    (2006)
  • M. Crawford et al.

    User involvement in the planning and delivery of mental health services: A cross-sectional survey of service users and providers

    Acta Psychiatrica Scandinavica

    (2003)
  • M. Crawford et al.

    Systematic review of involving patients in the planning and development of health care

    BMJ

    (2002)
  • R. Crow et al.

    The measurement of satisfaction with healthcare: Implications for practice form a systematic review of the literature

    Heath Technology Assessment

    (2002)
  • Department of Health

    No health without mental health: A cross-Government mental health outcomes strategy for people of all ages

    (2011)
  • Department of Health [DH]

    The NHS Plan: A plan for investment, a plan for reform

    (2000)
  • S. Eales et al.

    Service users and other stakeholders' evaluation of a liaison mental health service in an accident and emergency department and a general hospital setting

    Journal of Psychiatric and Mental Health Nursing

    (2006)
  • A. Faulkner

    Knowing our minds

    (1997)
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