Development of CuidaTEXT: a text message intervention to support Latino dementia family caregivers

Abstract

Objectives: To describe the development of CuidaTEXT: a tailored text message intervention to support Latino dementia family caregivers. Methods: CuidaTEXT is informed by the Stress Process Framework and Social Cognitive Theory. We developed and refined CuidaTEXT using a mixed-method approach that included thematic analysis and descriptive statistics. We followed six user-centered design stages, including the selection of design principles, software vendor collaboration, evidence-based foundation, caregiver and research/clinical advisory board guidance, sketching and prototyping, and usability testing among five Latino caregivers. Results: CuidaTEXT is a bilingual 6-month long intervention tailored to caregiver needs that includes: 1) 1-3 daily automatic messages (n=244) about logistics, dementia education, self-care, social support, end-of-life, care of the person with dementia, behavioral symptoms and problem-solving strategies; 2) 783 keyword-driven text messages for further help with the above topics; 3) live chat interaction with a coach for further help; 4) a 19-page reference booklet summarizing the purpose and functions of the intervention. CuidaTEXT's prototype scored 97 out of 100 in the System Usability Scale. Conclusions: CuidaTEXT's prototype demonstrated high usability among Latino caregivers. CuidaTEXT's feasibility is ready to be tested.

A Text Message Intervention to Support Latino Dementia Family Caregivers (CuidaTEXT): Feasibility study

“…Our findings suggest that centering the development of an intervention on Latinos can lead to quick enrollment rates, and high retention rates, usability, levels of intervention engagement, and satisfaction. These results are consistent with CuidaTEXT's user-centered design, which aims to develop usable and acceptable products consists by gathering and incorporating feedback from users into product design (International Organization for Standardization, 2018; Perales-Puchalt, Acosta-Rullan, et al, 2021). In fact, Latinos have been shown to have high interest in receiving caregiver support (Perales et al, 2018).…”

“…Our current study suggests some mechanisms that can be tested in that future study. Despite the encouragement from our advisory board to recruit more than one caregiver per IWD due to Latinos' family distribution of caregiving tasks (Perales-Puchalt, Acosta-Rullan, et al, 2021), most participants decided to participate on their own. Future studies should explore how to increase engagement of other family members, although our participants have already provided a valid solution: forwarding the messages they consider important to their families.…”

“…To be eligible, participants also had to provide hands-on care for a relative with a clinical or research dementia diagnosis, who also scored two or higher in the AD8 proxy-administered cognitive screener (Galvin et al, 2005;Pardo et al, 2013). In our previous research, advisory board members highlighted the importance of allowing the inclusion of more than one caregiver per IWD to reduce burden and increase social support (Perales-Puchalt, Acosta-Rullan, et al, 2021). For this reason, we allowed more than one caregiver participant per IWD.…”

“…CuidaTEXT is a bilingual, bidirectional, six-month intervention tailored to caregiver needs via Short Message Service text messages. An in-depth description of the intervention and its development has been previously reported (Perales-Puchalt, Acosta-Rullan, et al, 2021). The intervention is informed by the Stress Process Framework and Social Cognitive Theory (Bandura, 1972;Pearlin et al, 1990).…”

“…To address Latinos' caregiving disparities, we developed CuidaTEXT (a Spanish play on words for self-care and texting) (Perales-Puchalt, Acosta-Rullan, et al, 2021). CuidaTEXT is to our knowledge, the first text message intervention for caregiver support of individuals with dementia (IWDs) among Latinos or any other ethnic group.…”