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Headline
It proved feasible to culturally adapt and test family intervention with African-Caribbean people with schizophrenia and their families, and the study yielded high rates of recruitment, attendance, retention, and data completion.
Abstract
Background:
African-Caribbean people in the UK experience the highest incidence of schizophrenia and the greatest inequity in mental health care. There is an urgent need to improve their access to evidence-based care and outcomes. Family intervention (FI) is a National Institute for Health and Care Excellence-approved psychosocial intervention. Although clinically effective and cost-effective for schizophrenia, it is rarely offered. Evidence for any research into FI is lacking for ethnic minority people generally and for African-Caribbean people specifically.
Aims:
(1) To assess the feasibility of delivering a novel, culturally appropriate psychosocial intervention within a ‘high-risk’ population to improve engagement and access to evidence-based care. (2) To test the feasibility and acceptability of delivering FI via ‘proxy families’.
Design:
A mixed-methods, feasibility cohort study, incorporating focus groups and an expert consensus conference.
Setting:
Two mental health trusts in north-west England.
Participants:
We recruited a convenience sample of 31 African-Caribbean service users. Twenty-six family units [service users, relatives/family support members (FSMs) or both] commenced therapy. Half of the service users (n = 13, 50%), who did not have access to their biological families, participated by working with FSMs.
Interventions:
An extant FI model was culturally adapted with key stakeholders using a literature-derived framework [Culturally adapted Family Intervention (CaFI)]. Ten CaFI sessions were offered to each service user and associated family.
Main outcome measures:
Recruitment (number approached vs. number consented), attendance (number of sessions attended), attrition (number of dropouts at each time point), retention (proportion of participants who completed therapy sessions), and completeness of outcome measurement.
Results:
Of 74 eligible service users, 31 (42%) consented to take part in the feasibility trial. The majority (n = 21, 67.7%) were recruited from community settings, seven (22.6%) were recruited from rehabilitation settings and three (9.7%) were recruited from acute wards. Twenty-four family units (92%) completed all 10 therapy sessions. The proportion who completed treatment was 77.42% (24/31). The mean number of sessions attended was 7.90 (standard deviation 3.96 sessions) out of 10. It proved feasible to collect a range of outcome data at baseline, post intervention and at the 3-month follow-up. The rating of sessions and the qualitative findings indicated that CaFI was acceptable to service users, families, FSMs and health-care professionals.
Limitations:
The lack of a control group and the limited sample size mean that there is insufficient power to assess efficacy. The findings are not generalisable beyond this population.
Conclusions:
It proved feasible to culturally adapt and test FI with a sample of African-Caribbean service users and their families. Our study yielded high rates of recruitment, attendance, retention and data completion. We delivered CaFI via FSMs in the absence of biological families. This novel aspect of the study has implications for other groups who do not have access to their biological families. We also demonstrated the feasibility of collecting a range of outcomes to inform future trials and confirmed CaFI’s acceptability to key stakeholders. These are important findings. If CaFI can be delivered to the group of service users with the most serious and persistent disparities in schizophrenia care, it has the potential to be modified for and delivered to other underserved groups.
Future work:
A fully powered, multicentre trial, comparing CaFI with usual care, is planned.
Trial registration:
Current Controlled Trials ISRCTN94393315.
Funding:
This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 6, No. 32. See the NIHR Journals Library website for further project information.
Contents
- Plain English summary
- Scientific summary
- Chapter 1. Introduction
- Chapter 2. Review of the literature
- Chapter 3. What does cultural adaptation look like and how is it applied?
- Chapter 4. Developing CaFI: a consensus conference
- Chapter 5. Therapist and family support member training
- Chapter 6. Feasibility trial
- Chapter 7. Acceptability
- Chapter 8. Discussion
- Acknowledgements
- References
- Appendix 1. Search strategy for the systematic review of culturally adapted psychosocial interventions for schizophrenia
- Appendix 2. Characteristics of studies included in the systematic review of culturally adapted interventions (n = 46)
- Appendix 3. Characteristics of interventions included in the systematic review of culturally adapted psychosocial interventions for psychosis
- Appendix 4. Description and examples of themes of cultural adaptation
- Appendix 5. Cultural adaptations emerging from thematic analysis of psychosocial interventions for psychosis
- Appendix 6. Phase 1 service user recruitment poster
- Appendix 7. Phase 1 service user participant information sheet
- Appendix 8. Phase 1 service user consent form
- Appendix 9. Service user focus group topic guide
- Appendix 10. Help in a crisis information sheet
- Appendix 11. Service user focus group PowerPoint presentation slides
- Appendix 12. Mixed focus group topic guide
- Appendix 13. Mixed focus group presentation slides
- Appendix 14. Consensus conference participant information sheet
- Appendix 15. Consensus conference PowerPoint presentation slides
- Appendix 16. Components of the CaFI therapy manual
- Appendix 17. Therapist training slides for the delivery of the CaFI manual
- Appendix 18. Family support member recruitment poster
- Appendix 19. Phase 3 participant information sheet
- Appendix 20. Meriden Family Programme training evaluation form
- Appendix 21. Just Psychology cultural competency training family support workers’ feedback questionnaire
- Appendix 22. Just Psychology cultural competency training therapist feedback questionnaire
- Appendix 23. Just Psychology evaluation report
- Appendix 24. Phase 3 service user recruitment poster
- Appendix 25. Statistical analysis plan
- Appendix 26. CaFI fidelity measure
- Appendix 27. Feedback sheets
- Appendix 28. Qualitative follow-up interview schedule: service users
- Appendix 29. Histograms of the outcome measures
- List of abbreviations
About the Series
Article history
The research reported in this issue of the journal was funded by the HS&DR programme or one of its preceding programmes as project number 12/5001/62. The contractual start date was in May 2013. The final report began editorial review in March 2017 and was accepted for publication in August 2017. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The HS&DR editors and production house have tried to ensure the accuracy of the authors’ report and would like to thank the reviewers for their constructive comments on the final report document. However, they do not accept liability for damages or losses arising from material published in this report.
Declared competing interests of authors
none
Last reviewed: March 2017; Accepted: August 2017.
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- ADP-ribosylation factor GTPase-activating protein 2 isoform X2 [Cervus canadensi...ADP-ribosylation factor GTPase-activating protein 2 isoform X2 [Cervus canadensis]gi|2090126106|ref|XP_043338402.1|Protein
- Homo sapiens ribosomal protein S6 kinase, 90kDa, polypeptide 4, mRNA (cDNA clone...Homo sapiens ribosomal protein S6 kinase, 90kDa, polypeptide 4, mRNA (cDNA clone IMAGE:5216639), partial cdsgi|20380148|gb|BC028079.1|Nucleotide
- RecName: Full=Heterogeneous nuclear ribonucleoprotein A1; Short=hnRNP A1; AltNam...RecName: Full=Heterogeneous nuclear ribonucleoprotein A1; Short=hnRNP A1; AltName: Full=HDP-1; AltName: Full=Helix-destabilizing protein; AltName: Full=Single-strand-binding protein; AltName: Full=Topoisomerase-inhibitor suppressed; AltName: Full=hnRNP core protein A1; Contains: RecName: Full=Heterogeneous nuclear ribonucleoprotein A1, N-terminally processedgi|1350822|sp|P49312.2|ROA1_MOUSEProtein
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