Assessing the feasibility of use and content validity of ICECAP-CPM with bereaved family members of young people who died from serious illness: a UK think-aloud study

The ICECAP-Close Person Measure (CPM) is a self-complete measure developed for use in economic evaluation to capture capability outcomes for those close to individuals at the end of life. Its appropriateness for use with close persons of young people, aged 14–25, at the end of life has not yet been assessed. An initial assessment of its use with bereaved family members of young people with serious illness was undertaken. To assess feasibility of use and content validity of the measure, bereaved participants were asked to ‘think aloud’ when completing the ICECAP-CPM. Interview transcripts were examined for errors in comprehension, retrieval, judgement and response by four raters. Qualitative data explored reasons for errors during measure completion and participants’ views about the measure. Nine cognitive interviews were undertaken with parents (five) and siblings (four) of young people who had died. The measure appeared to be understood by the majority of participants, but there were errors in completion (18%) and struggles (4%). Participants suggested the measure was relevant to their experience and covered broad areas important to them. Although completion errors were identified, the measure appears relevant for use with bereaved family members of young people with serious illness.