JMIR Publications

ABSTRACT

Background:

A mobile health app (Roadmap 2.0) has previously been developed for caregivers of hematopoietic stem cell transplant (HCT) patients. In order to build additional components for this app and test it in a future randomized controlled trial, formative research in users (caregivers) is needed in the design and development of this app.

Objective:

This study sought to create a methodologically-rigorous national survey that would help inform the development of Roadmap 2.0.

Methods:

Prospective, qualitative research study that took place between November 18, 2018 – February 07, 2019 in a Blood and Marrow Transplant (BMT) unit within a large academic medical institution in the Midwestern part of U.S. Cognitive interviews, including think-aloud and verbal probing techniques, were conducted in 10 adult caregivers (≥ 18 years) of HCT patients. Majority of the participants were: female (N=9, 90%); white (N=9, 90%); married (N=9, 90%); employed at least part-time (N=6, 60%); caregivers of adult patients (N=7, 70%); and had some college education (N=9, 90%) and an annual household income of $60,000 or higher (N=6, 60%). All but one interview was audio-recorded, with permission.

Results:

Majority of the participants were: female (N=9, 90%); white (N=9, 90%); married (N=9, 90%); employed at least part-time (N=6, 60%); caregivers of adult patients (N=7, 70%); and had some college education (N=9, 90%) and an annual household income of $60,000 or higher (N=6, 60%). All but one interview was audio-recorded, with permission. Overall, participants were engaged in the cognitive interview process of the draft survey that included seven topics. The interviews highlighted areas wherein survey items could be further refined, such as offering more response choices (e.g., “NA”) or clarifying type of transplant (e.g., autologous, allogeneic) or context of transplant care (e.g., pre-HCT, during HCT, post-HCT, inpatient, outpatient). Apart from these findings, the items in demographics, caregiving experiences, technology, positive activities, and mood were generally interpreted as intended. Based on transcript data and field notes by the interviewer, items within self-efficacy (Caregiver Self-Efficacy Scale) and coping (Brief Cope) questionnaires generated more confusion among interviewer-participants, reflecting difficulties in interpreting the meaning of some survey items.

Conclusions:

This study incorporated the four cognitive aspects of survey methodology that describe the question-answering process: 1) comprehension; 2) information retrieval; 3) judgement and decision-making; and 4) responding by using the think-aloud and probing techniques in cognitive interviews. We conclude that this methodologically-rigorous process informed revisions and improved our final questionnaire design. Clinical Trial: NA