Modifying the Communicative Participation Item Bank (CPIB) for individuals receiving gender-affirming communication care: Stakeholder feedback from cognitive interviews

Introduction

The Communicative Participation Item Bank (CPIB) is a person-reported outcome measure designed for adults with communication disorders. The CPIB has not been validated for use with clients seeking gender-affirming communication care. The purpose of this study was to determine modifications needed to the CPIB for it to be appropriate for transgender respondents.

Methods

Individual qualitative cognitive interviews were conducted with 14 transgender adults (seven assigned male at birth, six assigned female at birth, one intersex / assigned female at birth). As participants completed the CPIB, they were asked to ‘think out loud’ to share their reactions to the items, reasons for their item responses, and any recommendations for changing the CPIB. Interviews were recorded, transcribed, and analyzed to identify common and salient trends in participants’ feedback.

Results

The most salient change participants required was in the CPIB item stem. The original stem (“Does your condition interfere with….”) is inappropriate for transgender clients because referring to being transgender as a ‘condition’ is unacceptable. A new stem (“How difficult is it for you to ….”) was acceptable to participants. The original CPIB uses the phrase ‘family and friends’ to refer to safe and comfortable communication partners. Participants in this study reported that this does not reflect the experiences of many transgender people who are not accepted by their biological families. The recommended alternate wording is “people who know you well.” The items reflected situations that were relevant to participants, and wording was acceptable with few exceptions. Participants suggested they would have responded to the CPIB items differently earlier in their transition, with their scores improving over time.

Conclusions

The original CPIB questionnaire should not be used with transgender clients due to unacceptable wording. The modified items generated from this study require psychometric calibration for a new CPIB version for clients seeking gender-affirming communication care.