Table 4 Study Characteristics
From: Co-producing research on psychosis: a scoping review on barriers, facilitators and outcomes
Focus of the study | Co-production component | |||||||
|---|---|---|---|---|---|---|---|---|
Study | Country | Study Topic | Study type | Sample | Participant and/or Service Users Diagnosis | Research team | Steering group | Other roles e.g., participants |
Csipke et al. [34] | England | “Service user and frontline staff perspectives on psychiatric ward design” | Descriptive Participatory Methodology (Adapted the “SURE Model”) | Purposive sampling of 20 service users (during interview phase) and 104 service users (during questionnaire phase) Mean age during measure development phase was 44.20, during the questionnaire phase 41.41 and during the photography phase 44.20 | Schizophrenia/Psychosis, Bipolar Disorder, Depression/Anxiety, Substance Misuse, Dual Diagnosis (options for Other and Not Disclosed also provided) | Two service user researchers Staff (qualified nurse, student nurse, domestic or registrar and researchers) | NA | Service user as study participants (voluntary, under section or not disclosed/unavailable) |
Higgins et al. [27] | Ireland | Development and evaluation of an “information programme for users of services and family members” | Descriptive Participatory Action Research Sequential Mixed Method Design | 58 participants during the research phase (30 service users, 21 family members and 7 clinicians), 13 clinicians and 10 peer facilitators attended the initial training, and 30 service users attended the pilot programme; all aged between 23–80 and referred from a local mental health services | Schizophrenia, Bipolar Disorder, Schizoaffective Disorder, Severe Depression or Psychotic Depression | Clinicians and multidisciplinary clinical teams | Yes—“Steering group comprised on representatives from all stakeholder groups involved” | Service users and family members as study participants |
Kristensen et al. [26] | Denmark | Consensus building on “patient-reported outcome measures” for “psychiatric clinical registries” | Descriptive Iterative co-creation process | 30 service users (10 Patient Peer Board and 20 Steering Group) all “appointed by the two relevant stakeholder organizations” Age not reported | Depression and Schizophrenia | Patient Peer Board Members (PPB), Steering Group (SG) comprised of an interdisiplinary group of healthcare care professionars | Yes — SG | NA |
Larkin et al. [31] | England | Service user, staff and parent perspective on improving the “experience of hospitalization during early psychosis” | Qualitative Experience Based Co-Design Action Research | 150 participants recruited through purposive sampling Age not reported | Psychosis | Collaboration with service users, carers, community and impatient staff and managers | Yes—“Steering groups, which included NHS staff, service users and family members” | Feedback groups “ consisting separately of inpatient staff, community mental health staff, NHS managers, family members, or service-users”Servicer users, parents and inpatient staff as study participants |
Morant et al. [39] | England | “User experiences of antipsychotic medication and lack of involvement in medication decisions” | Qualitative | 20 participants recruited through purposive sampling mean age of 40.3 | Schizophrenia and Schizoaffective Disorder | Service user research and study researchers | Yes—“collaboration with an established mental health service users group South Essex Service User Research Group (SE-SURG)” | Service users as study participants |
Neil et al. [37] | England | Development and validation of a “measure of recovery from psychosis” | Descriptive | 10 to 15 participants recruited through convenience sampling Age not reported | Psychosis | Two service user researchers, service user consultants, graduate research assistant, trainee clinical psychologist and qualified clinical psychologists | Yes—Steering committee “consisted of 10 and 15 Service Users” | NA |
Pelletier et al. [35] | Canada | “Improve access to primary care for the physical health of patients with servere mental illnesses” | Quantitative Participatory Action Research Design | 146 participants with a mean age of 52.7 recruited through a non-profit organisation | Schizophrenia | Co-research team including a physician with mental illness, psychiatrists, Director of the IPPAR(International Program for Participatory-Action Research), adjunct director of the local health authority, general practitioner, university professor of nursing, research assistant with mental illness | Yes—“2 patients were members of the Advisory Board that provided leadership and advice” as well as the “physician with mental illness, psychiatrists, director of the IPPAR, investigator familiar with Australian Guideliens, adjuct director of the local health authority, general practitioner, practicing nurse, family member (mother of a person with serious mental illness), communication specialist with health profssionals, univeristy professor of nursing, research assistant with mental illness, PhD candidate in nursing” | “Mental health service users who interact with study participants in small group learning sessions”IPPAR members include “psychican with mental illness”, “investigator familiar with the Austrlian Guidelines”, and “research asssistants with mental illness” |
Pitt et al. [38] | United Kingdom | Experience of "people’s recovery from psychosis; to define recovery from a user perspective” | Qualitative | 7 participants recruited through mental health groups aged 18–65 | Psychosis | Led by two user researchers, in collaboration with a steering committee, with supervision from clinical psychologists | Yes—“Steering Committee of service users” | Service user as study participants |
Realpe et al. [32] | United Kingdom | Co-design of an online platform “to deliver social cogntivie therapy in early psychosis” | Descriptive Co-design | Stage 1&2: 2 service users Stage 3: four service users Stage 4: four volunteers from target population but without mental health history Stage 5: 20 participants recovering from first episode psychosis Recruited through mental health partnerships and universities Age not reported | Psychosis | Service users and study researchers | Yes—Consulted MQ Young People’s Advisory Group | “Four university students” (non-service users) involved to “beta test the prototype” |
Roelandt et al. [40] | 15 countriesa | Service user and carer perspectives “about “depressive episode” and “schizophrenia” diagnoses” | Mixed Method Participatory Research | 263 service users and 255 carers recruited as the visited mental health services in study sites with a mean age of 39.4 for users and mean age of 55.1 for carers | Schizophrenia and Depression | Service users and carers (“part-time or full-time, on a personal basis and in a continuous manner”), “health care professionals working in the field of mental health, including peer workers and experts by expereince” | Yes—Steering committee | Service users and carers as study participants |
Schneider et al. [33] | Canada | “Communication Between People with Schizophrenia and Their Medical Professionals” | Qualitative Participatory Research | 11 participants, recruitment strategy not reported Age not reported | Schizophrenia | People with schizophrenia from the Unsung Heroes Peer Support Group were both the researchers and the research participants (e.g., service user researchers interviewed each other and analysed the data), university researcher and research assistant | NA | Service users as study participants |
Sin et al. [28] | England | “Multicomponent eHealth Intervention for Family Carers for People Affected by Psychosis” | Descriptive Participatory Research Methodologies | 24 participants with EAG recruited through various digital communications and carers from 3 mental health trusts all aged between 23 and 83 | Psychosis or Schizophreniform | Expert advisory group (EAG) “comprising of individuals with lived experience of psychosis, carers, health care professionals, researchers, voluntary organization workers and elearning experts” | Yes—EAG Focus groups discussions with additional carers (who were independent from the study) were consulted on the drafts of the intervention | NA |
Susanti et al. [29] | Indonesia | “Patient and public involvement to strengthen Indonesian mental health care for people with psychosis” | Qualitative | 22 service users and 21 carers recruited through convenience sampling; with a mean age of 38.8 for user and mean age of 51.7 for carer | Psychosis | Patient and public involvement (PPI) group (service users, carers) mental health nurse academic, and carer-researcher | Yes—PPI advisory groups consisting of people with lived expereince of psychosis or carers | Service user and carer as study participants |
Terp et al. [30] | Denmark | “Young adults with schizophrenia become strong Collaborators” | Descriptive Qualitative | 7 young adults, 7 healthcare professionals recruited through purposive sampling aged between 19–31 | Schizophrenia | Young adults with Scizophrenia, healthcare providers, software designers, graphic designers, graphic recorder and team leader | NA | Service users and health professionals as study participants |
Tischler, et al. [36] | England | Patient- Centeredness | Mixed Methods Community Study | 14 mental health service users and 3 senior psychiatrists were self-selected Age not reported | Schizophrenia | Service usrs and senior psychiatrists (one of the psychiatrist was also a mental health service user) and study team | NA | Service users and psychiatrists as study participants |