Exploring young adult experiences of informal care in EP (v1)
Research type
Research Study
Full title
Exploring young adult experiences of informal care in early psychosis
IRAS ID
347311
Contact name
Lizette Nolte
Contact email
Sponsor organisation
University of Hertfordshire
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
0 years, 11 months, 23 days
Research summary
Care policies are critiqued for their unidirectional emphasis – from caregiver to care recipient – (Guest & Corrigan, 2018) to the detriment of capturing the reciprocity of care (Slade, 2009). And this is reflected in the informal care literature within psychosis where the burden of caregiving (Onwumere et al., 2018) is privileged over the lived experience of being cared for (Fox, 2022). Informal care is defined as the unpaid provision of care to a relative, partner or friend suffering from ill physical or mental health (DoH, 2018).
The present study therefore aims to explore young adult experiences of informal care in early psychosis, a phase shown to embody a dual need for receiving and reciprocating care (Allman et al., 2018, Boden‐Stuart et al., 2021). Thus, the proposed study affords an avenue for understanding whether there is an unmet need for reciprocal care, thereby potentially inviting new ways of family intervention, in line with NICE guidelines for early psychosis (NHSE, 2016). An expressed need for a reciprocal caring dynamic would also accord with the vital role of family in recovery (Estradé et al., 2023), ostensibly shielding against often pronounced disruptions to selfhood in early psychosis (Ben-David & Kealy, 2020; Fusar-Poli et al., 2022).
The proposed study will take a qualitative approach using interpretive phenomenological analysis. The intended aim is to conduct semi-structured interviews with between 5-10 (Polkinghorne, 1989) individuals experiencing early psychosis. Interviews will be transcribed and analysed using NVivo. Participants will be recruited from within the NHS. Inclusion criteria include lived experience of early psychosis and informal care, fluency in English and being aged between 18 and 29 years. Participants will be excluded from this study if they are experiencing psychological distress, presenting with significant risk to self (/others) and/or lacking capacity to consent in adherence with the Mental Capacity Act (2005).
REC name
London - Brent Research Ethics Committee
REC reference
24/PR/1264
Date of REC Opinion
24 Oct 2024
REC opinion
Favourable Opinion