Understanding caregiving processes in South Asian Families
Research type
Research Study
Full title
Understanding caregiving processes in South Asian families
IRAS ID
230098
Contact name
Madiha Shaikh
Contact email
Sponsor organisation
University College London
Clinicaltrials.gov Identifier
Z6364106/2018/02/15, UCL Data Protection
Duration of Study in the UK
3 years, 0 months, 1 days
Research summary
The chance of someone who has previously experienced a mental illness having a relapse is understood to be greater if families are over-involved, hostile, critical and dissatisfied - a concept known as 'expressed emotion (EE)'. However, culture and ethnicity can impact the manifestation of EE; what is considered 'emotional over involvement' from a Western perspective may not be related to unfavourable outcomes in some cultures, including South Asian groups. This has important implications for Family Interventions (FI) for psychosis in multicultural settings, which are recommended by the National Institute of Clinical Excellence (NICE) guidelines. Caution should be taken to ensure interventions are relevant to all families, are delivered in a culturally appropriate way (NICE, 2014b) and avoid pathologising certain groups. Crucially FI should not inadvertently increase family stress by decreasing EE components which could in fact be protective for certain cultural groups.
This project aims to further understand EE in South Asian caregivers of people with a First Episode Psychosis (FEP)and the relationship between caregiving processes and clinical outcomes. Additionally, to provide perspective and context to this data, normative data from South Asian participants from families where there is no significant health stressor will be collected with the aim of obtaining a 'baseline' norm.
Data will be collected at three time points for the clinical population. At every stage service users and caregivers will be recruited to complete questionnaires measures relating to EE, carer appraisals or caregiving, health and wellbeing/distress. Routinely clinical outcome data including relapses, number of hospital admissions and bed days will also be used.
Data will be collected from a non-clinical population at a single time point and participants will complete questionnaire measures relating to EE and health and well being/ distress either online or by postal means.
We seek to improve understanding of the relationship between caregiver EE and service user perceptions of caregiver EE in South Asian families. Furthermore, the study aims to increase understanding of the relationship between EE and clinical outcomes in first episode psychosis in South Asian families. We anticipate this will further understanding about EE processes cross culturally and help to in the development of culturally appropriate FIs to improve the effectiveness of mental health services in multicultural settings.
REC name
Yorkshire & The Humber - South Yorkshire Research Ethics Committee
REC reference
18/YH/0296
Date of REC Opinion
22 Nov 2019
REC opinion
Further Information Favourable Opinion