Mobile Health for Caregivers of Young Adults With Early Psychosis: A Survey Study Examining User Preferences

Most young adults with early psychosis live with family members (1) who play a critical role in their recovery. Patients with engaged families are more likely to persist in and benefit from treatment (2, 3). Caregivers not only support formal care but also informally manage other aspects of recovery, with on average 22 hours per week and 14% of their incomes (4). Caregivers also report a significant emotional burden. Nearly 80% of caregivers report burnout (5), and one-third to one-half experience depression (6). Caregivers face unique challenges in this role because they are often tasked simultaneously with direct practical support for their relative (e.g., transportation, groceries), advocacy for their affected relative’s treatment, and in-the-moment psychological or crisis support (7). Traditional models of care are ill-equipped to address these needs, and a large body of work has identified specific needs that could be provided in specialized early psychosis services. The most critical of these services include practical information about psychosis and treatment, training in communication and crisis management, resources for coping with associated negative emotional experiences, and integration into comprehensive coordinated approaches to early psychosis treatment (8, 9).

Although specialty services are expanding, family psychoeducation is estimated to be offered to fewer than half of all affected families (10), with some estimates as low as 1% (11). Digital technologies have the potential to address these gaps, but they lag far behind those developed for patients. Results from early studies of Web-based programs have indicated that such programs can improve caregivers’ knowledge about psychosis and improve social support (12–14). However, most have examined Web-based software or telepsychiatry. Mobile health (mHealth) may provide unique advantages for caregivers. First, mHealth can provide tools in the moments when users face in vivo stressors. Second, the average U.S. adult spends at least four times more time on mobile devices than on Internet-connected computers (15). A recent systematic review of digital technologies for caregivers of individuals with early psychosis examined 8,538 studies but reported on no mHealth interventions (16). Knowledge is lacking about the mHealth features most acceptable to this population. In this study, we expand on these findings by assessing caregivers’ interest in an array of specific functions potentially offered by mHealth to guide future development of mHealth for caregivers.

Methods

Data collection was approved by the internal review boards at the University of Washington. Participants were recruited through clinician referral, flyers in clinical settings, and advertisements in collaboration with local behavioral health agencies, medical centers, regional affiliate advocacy organizations, and mental health training events. Caregivers were included if their affected family member experienced psychosis before age 35. They were referred to participate in focus groups aiming to understand their treatment needs to develop programs supporting them. After arrival, all participants provided written informed consent. Independently and immediately preceding participation in the focus groups, caregivers completed an inclusive and exploratory questionnaire examining caregivers’ attitudes toward a hypothetical mHealth intervention (see online supplement), followed by questions related to their technology use (“Have you ever used technology to better understand your family member’s condition? If yes, what sources have you used?”). Questions examined caregivers’ use of technology as well as their interest in features of a mobile intervention, its potential communication functions, and with whom and how they would prefer to communicate. The questionnaire was developed by this project’s first (B.B.) and senior (D.B.-Z.) authors, each of whom has experience in developing and testing mHealth interventions for serious mental illness. We calculated mean scores on each item and determined the number of participants who responded with a value above the midpoint of a 5-point Likert scale, indicating that the participant was interested or very interested in the feature.

Results

Forty-three caregivers completed the study measures. Most were female (N=33, 77%), White (N=30, 70%), and married (N=28, 65%), with a bachelor’s degree or higher (N=33, 77%). Their mean±SD age was 55.8±9.6 years. Most caregivers reported that their family member had schizophrenia spectrum disorder (N=38, 88%), and two reported mood disorder with psychotic features (N=2, 5%); three caregivers (7%) did not respond to this item. The mean age of affected relatives at the time of this study was 26.4±8.6 years, and their mean age at time of diagnosis was 20.8±4.6 years; on average, it had been 5.4±6.6 years since diagnosis. The relationships that caregivers had with affected individuals included parents (N=38, 88%), grandparents (N=1, 2%), siblings (N=3, 7%), or domestic partner of primary parent (N=1, 2%). Nearly all caregivers (N=39 of 42, 93%) reported using digital technology to better understand psychosis. The most common examples reported were mental health organization websites (e.g., National Alliance on Mental Illness; N=31, 74%), health websites (e.g., WebMD; N=21, 50%), and YouTube (N=12, 29%).

The top five features caregivers endorsed as parts of an mHealth app (Table 1) were reports of changes in their family member’s symptoms (N=40 of 42, 95%, indicating interest), information about psychological treatments (N=38 of 42, 90%), information about mental health systems (N=38 of 42, 90%), information about medications (N=36 of 42, 86%), and information about communication with their affected family member (N=37 of 42, 88%). The five least appealing features to caregivers were setting and tracking their own goals (N=20 of 41, 49%), information about relaxation exercises (N=26 of 42, 62%), skill practices for relaxation (N=24 of 40, 60%), skill practices for managing stress (N=27 of 41, 66%), and information about community events (N=29 of 42, 69%).

Caregivers then provided preferences for which individuals should deliver app content. They preferred varied sources, including psychiatrists (N=39 of 40, 98%), individual therapists (N=37 of 39, 95%), family therapists (N=37 of 40, 93%), researchers or experts (N=37 of 40, 93%), other caregivers (N=37 of 41, 90%), or other young adults with psychosis in recovery (N=35 of 40, 88%). Next, caregivers provided preferences related to delivery modality. They reported the highest level of interest in written text (N=34 of 40, 85%) or video content (N=27 of 37, 73%), whereas fewer were interested in audio content (N=24 of 39, 62%) or discussion boards (N=21 of 36, 58%).

Next, caregivers were surveyed on issues related to direct communication with providers, including the type of providers they would like to interact with and how. Caregivers expressed most interest in communicating with individual therapists (N=38 of 40, 95%), psychiatrists (N=35 of 40, 88%), researchers or experts (N=30 of 39, 77%), and other caregivers (N=30 of 40, 75%). Fewer participants expressed interest in the ability to communicate with young adults with lived experience (N=25 of 38, 66%). The most popular modalities for communication with providers included two-way texts (N=35 of 40, 88%) or phone calls (N=34 of 41, 83%). Fewer caregivers expressed interest in phone calls with a clinical provider while their relative is present (N=26 of 38, 68%), and the least appealing options were video calls (N=16 of 38, 42%) and one-way texts (N=12 of 37, 32%).

Discussion

The findings of this study indicate that caregivers of young adults with early psychosis are highly interested in mHealth technologies to support their caregiving activities. This study builds on previous work suggesting that caregivers desire additional tools and resources to support them in these activities (17, 18). Caregivers expressed differential preferences for specific features, including particular interest in informational content that could help them support and communicate with their affected family member.

A vast majority (93%) of caregivers reported that they already use digital technologies as support for their caregiving. Most commonly, they reported using mental health advocacy organization websites, health information websites, and YouTube content. Beyond current use of technology, most caregivers overall reported interest in specific potential functions served by mHealth. For example, for the most popular proposed features (e.g., reports of changes in relative’s symptoms, information about treatments for your relative, information about mental health systems), at least 90% of the sample reported interest.

Caregivers appeared to express a preference for content related to caregiving activities, more so than those supporting their own well-being. Many of the items that were least popular were those that were designed to provide direct support to the caregiver (e.g., relaxation exercises). On one hand, this finding may be reflective of the targeted nature of caregivers’ needs. On the other hand, it could reflect particularly elevated burden that prevents them from having the capacity to consider prioritizing their own needs. Previous work examining caregivers’ needs has mirrored this trend (8), as most caregivers have emphasized practical caregiving support above their own emotional needs. Although this emphasis is often intended to better serve the affected relative, it could increase risk for both the caregiver and the affected relative should the caregiver become limited in their ability to provide care because their own mental health is affected by their caregiver burden.

Some patterns emerged related to caregivers’ preferences to in-app communication. Although participants generally expressed interest in many individuals (i.e., peer caregivers and providers) delivering content, caregivers indicated the greatest interest (>90% interested) in speaking with psychiatrists and therapists when expressing preferences related to direct communication. This desire for contact with mental health professionals might again reflect the desire among caregivers for adequate information related to presentation, prognosis, and treatments available for psychosis. Last, with regard to communication modality, participants expressed greatest interest in two-way text messages and phone calls. This finding builds on previous work indicating that text messaging can engage individuals with psychosis; our results suggest that a similar strategy may also be acceptable to caregivers (19).

This project was not without limitations. First, items describing mHealth features were generated by the research team and not by the caregivers themselves. Although members of the research team had expertise in mHealth interventions, clients’ impressions of an imagined intervention may differ from the actual experience of one. It is possible that the structure of data collection biased caregivers toward reporting interest in intervention features. Second, caregivers’ self-reported needs may not exhaustively include all practical needs, particularly considering the fact that caregivers were not involved in generating the list of mHealth app features assessed in these data. Last, we examined attitudes in a small sample; all participants lived in Washington State, and most were White, were female, and had at least a bachelor’s degree. Furthermore, as a group, participants reported a high likelihood to engage in an mHealth app for caregivers should one become available. As a result, this finding may limit the variability of ratings of specific features. Sampling from others with lower enthusiasm for digital tools may help confirm the most integral features for such a tool. Future work could examine these attitudes on a population level and whether attitudes vary across demographic groups.

Conclusions

Several potential advantages of mHealth recommend it for supporting caregivers of young adults with early psychosis. This study provides preliminary support for the appeal of such interventions among caregivers. Our sample of caregivers reported overwhelmingly that they already use technologies that support their caregiving activities and that multiple mobile app features were particularly appealing to them. The work of caregivers is vital in supporting youths with early psychosis; the results presented here suggest a new avenue for offering assistance to caregivers so that they can provide that support to their affected relatives.