Transforming End of Life Care - Cognitive Interview Study
Research type
Research Study
Full title
Transforming End of Life Care: Cognitive Interviews with Patients and Families to explore measures of quality of care and communication at the end of life
IRAS ID
179417
Contact name
Jonathan Koffman
Contact email
Duration of Study in the UK
0 years, 8 months, 31 days
Research summary
The need to train generalist staff in end of life care and communication skills, and for this training to be evidence based, has been repeatedly emphasised over the last decade (Department of Health, 2008, 2014; Health Education South London, 2013; House of Commons Health Committee, 2015). As a result, there has been a proliferation of studies assessing the effectiveness of end of life care and communication skills training programmes (for reviews, see Moore, Rivera Mercado, Grez Artigues, & Lawrie, 2013; Pulsford, Jackson, O'Brien, Yates, & Duxbury, 2013; Uitterhoeve, Bensing, Grol, Demulder, & T, 2010). However, few studies (and even fewer high quality studies) have measured the effectiveness of training using patient- and family-reported outcomes (Moore et al., 2013). Consequently, little is known about which patient- and family-reported outcome measures are feasible, appropriate and acceptable to use when assessing training effectiveness, despite these individuals being key stakeholders in end of life care.
The aim of this cognitive interview study is to explore the feasibility, appropriateness and acceptability of patient- and family-reported outcomes measures that could be used to test staff training effectiveness. To do this, we will use cognitive interviews with three groups of service users: (1) palliative care patients, (2) relatives/friends of palliative care patients, and (3) bereaved relatives/friends of palliative care patients (decedents) who recently died. Cognitive interviews are a type of one-to-one interview that can be used to assess the feasibility, appropriateness and acceptability of measures, by exploring for each item a participant’s understanding of the question itself, their ability to recall the relevant information to answer the question, their ability to make a decision based on this information, and then match this decision to a response option (Frost, Reeve, Liepa, Stauffer, & Hays, 2007). Cognitive interview results will be used to revise and re-test the outcome measures of interest accordingly.
TO SEE FULL REFERENCES FOR THE INCLUDED CITATIONS, PLEASE SEE THE REFERENCES DOCUMENT ATTACHED.
REC name
London - Camberwell St Giles Research Ethics Committee
REC reference
15/LO/0734
Date of REC Opinion
30 Jun 2015
REC opinion
Further Information Favourable Opinion