Carers' Experiences of Unusual Beliefs
Research type
Research Study
Full title
Carers’ Experiences of Unusual Beliefs: An exploration of burden and acceptance in psychosis and dementia
IRAS ID
201120
Contact name
Julia Taylor
Contact email
Sponsor organisation
University of Liverpool
Duration of Study in the UK
0 years, 10 months, 9 days
Research summary
There are an estimated 6 million informal carers in the UK (Carers UK, 2011) and they play a pivotal role in achieving positive outcomes, for both the carer and the person being cared for (Amaresha & Venkatasubramanian, 2012). While there has been extensive interest in the experience of caring, little is understood about the experience of being confronted by thoughts and beliefs of the cared-for person that are difficult to accept.
Within the context of psychosis unusual beliefs are common. Prevalence in dementia is also high with estimates ranging from 20% (Migliorelli et al., 1995) to 32% (Fernández, Gobartt, & Balañá, 2010) with a significant and disproportionate impact on carer distress (Burns, 2000; García-Alberca et al., 2014).
The study aims to take a symptom based approach, to explore common themes in the experiences of carers when coping with their family members’ experiences of unusual beliefs irrespective of diagnostic category, while remaining alert to the contextual differences. For the purposes of this study, the term “unusual belief” can be understood to describe the same experience as a “delusion” as defined in the DSM-V (American Psychiatric Association, 2013). This study will explore acceptance, defined as the ability to acknowledge and turn towards reality, even when painful or difficult, without engaging in attempts to change it (Fletcher & Hayes 2005) as well as the impact of acceptance, if present, on the perception of burden.
Participants will be identified and recruited by clinicians who have treated their loved ones within Mersey Care NHS Trust as a consequence of experiencing unusual beliefs. Recruitment to this study will take place between February and December 2016.
A qualitative grounded theory methodology will be used and participants will be invited to participate in an interview of up to 1 hour in length.REC name
Yorkshire & The Humber - Leeds East Research Ethics Committee
REC reference
16/YH/0121
Date of REC Opinion
17 Mar 2016
REC opinion
Favourable Opinion