JMIR Publications

ABSTRACT

Background:

Family caregivers of individuals with gynecologic cancer experience high levels of distress. Web based caregiver support interventions have demonstrated efficacy in improving caregiver outcomes. However, the lack of portability could be a limitation. mHealth apps could fill this gap and facilitate communication between patient-caregiver dyads.

Objective:

To obtain information on desired usage and features to be used to design an mHealth self-management support app targeting dyads.

Methods:

We conducted Zoom focus groups with women who had been treated for gynecologic cancers (ovarian, fallopian, primary peritoneal, uterine, endometrial, cervical, vulvar) and their self-identified closest support person. A semi-structured interview guide informed by the Consolidated Framework for Implementation Research (CFIR) was used to elicit information on intervention characteristics, outer setting, inner setting, characteristics of individuals, and processes relevant to app design and implementation. After transcription, rapid qualitative analysis using a thematic matrix was used to identify common themes across groups.

Results:

The final sample included 41 individuals with gynecologic cancer and 22 support persons/caregivers (total n=63). Patients were aged between 32-84 years old, and most (94%) were white and married. For caregivers, 15 individuals identified as male and 7 as female, with ages ranging between 19 and 81 years old. Almost 60% of CGs were spouses. Seven themes emerged related to our three topic areas: 1) Gaps in Information & Support: i) Finding relevant information is time-consuming and emotionally draining; ii) Caregivers and patients lack confidence in determining when, how, and from whom to obtain assistance with new or concerning problems; 2) Desired features of mhealth app: Caregivers and patients desire iii) centralized, trustworthy information; iv) timely recommendations tailored to specific personal and cancer related needs; v) opportunities to interact with clinical and peer experts through the app; 3) Interest and preferences for app usage: Caregivers and patients were interested in the app, but expressed needs to vi) have private space in the app for each member of the dyad; and vii) have control over sharing of information with other family members.

Conclusions:

Designing a single mHealth app to be used by both members of the cancer dyad presents unique challenges for intervention designers and app developers. Results of the present study highlight the need for flexibility in app functionality and sharing information between members of the dyad. Clinical Trial: Not applicable.