Mobile Health, Information Preferences, and Surrogate Decision-Making Preferences of Family Caregivers of People With Dementia in Rural Hispanic Communities: Cross-Sectional Questionnaire Study

Abstract

BackgroundMobile health (mHealth) technology holds promise for promoting health education and reducing health disparities and inequalities in underserved populations. However, little research has been done to develop mHealth interventions for family caregivers of people with dementia, particularly those in rural Hispanic communities, who often serve as surrogate decision makers for their relatives with dementia.ObjectiveAs part of a larger project to develop and test a novel, affordable, and easy-to-use mHealth intervention to deliver individually tailored materials in rural Hispanic communities, in this pilot study, we aimed to examine (1) characteristics of people with dementia and their family caregivers in rural Hispanic communities, (2) caregivers’ preferences for types and amounts of health information and participation in surrogate decision making, and (3) caregivers’ mobile device usage and their desire for receiving information via mobile devices.MethodsThis was a cross-sectional survey. A convenience sample of 50 caregivers of people with dementia was recruited from rural health care facilities in Southwest Texas during 3 weeks of April 2017 to May 2017 via word-of-mouth and flyers posted at the facilities.ResultsMore women than men were in the patient group (χ21=17.2, P<.001) and in the caregiver group (χ21=22.2, P<.001). More patients were on Medicare and Medicaid; more caregivers had private insurance (P<.001 in all cases). Overall, 42% of patients did not have a power of attorney for their health care; 40% did not have a living will or advance directive. Caregivers were interested in receiving all types of information and participating in all types of decisions, although on subscales for diagnosis, treatment, laboratory tests, self-care, and complementary and alternative medicine, their levels of interest for decision-making participation were significantly lower than those for receiving information. On the psychosocial subscale, caregivers’ desire was greater for surrogate decision-making participation than for information. Caregivers did not differ in their interests in information and participation in decision making on the health care provider subscale. All but 1 caregiver (98%) owned a mobile phone and 84% had a smartphone. Two-thirds wanted to receive at least a little dementia-related information via a smartphone or tablet. The amount of dementia-related information caregivers wanted to receive via a mobile device was significantly greater for women than for men (U=84.50, P=.029). Caregivers who owned a tablet were more likely to want to receive dementia-related information via a mobile device than those who did not own a tablet (U=152.0, P=.006).ConclusionsCaregivers in rural Hispanic communities were interested in receiving a wide range of information as well as participating in making decisions for their relatives with dementia. There is much need for effective mHealth interventions that can provide information tailored to the needs and preferences of these caregivers.

Association Between Cohabitation Status and Sleep Quality in Families of Persons With Dementia in Korea: A Cross-sectional Study

“…Moreover, the caregivers' burden is known to be higher in those who care for individuals with dementia than in those who care for individuals with other chronic diseases [27]. Individuals living with a PwD may face various challenges in caring for the PwD every day and may need to make care-related decisions [28]. However, caregivers are often unprepared for their roles and responsibilities, are not very familiar with treatment options, are uncertain about patient preferences, and often do not get expert support in making decisions [28,29].…”

“…Individuals living with a PwD may face various challenges in caring for the PwD every day and may need to make care-related decisions [28]. However, caregivers are often unprepared for their roles and responsibilities, are not very familiar with treatment options, are uncertain about patient preferences, and often do not get expert support in making decisions [28,29]. In this study, a lowlevel of education may have been related to inexperience in A chronic disease was defined as a diagnosis of hypertension or diabetes mellitus; The number of chronic diseases is the sum of the number of the above diagnoses.…”

CommunityRx: Optimizing a Community Resource Referral Intervention for Minority Dementia Caregivers

“…Caregivers also suggested including detailed eligibility criteria and an indication of services with providers who were trained in dementia care needs to improve delivery of clinical referrals to community resources. Studies of Hispanic caregivers note lack of support as a main factor in experiencing burden and high interest in receiving information to support self-care (Xie et al, 2018). One large-scale study of Asian American adults (N = 2,609) found that awareness of dementia-related services increased their odds of having a plan should they develop dementia in the future (Jang et al, 2018).…”

The impact of a physician’s recommendation and gender on informed decision making: A randomized controlled study in a simulated decision situation

“…Decisions in such situations are referred to as preference‐sensitive, since in the end, the patient's preference will determine the decision made, and thus the individual needs and preferences of a patient must be taken into account very carefully 1,2 . However, many people find it difficult to make decisions about their own health 3‐5 . Often, medical expertise is needed to make an informed decision, or at least to indicate an informed preference for a treatment option 6,7 .…”

“…1,2 However, many people find it difficult to make decisions about their own health. [3][4][5] Often, medical expertise is needed to make an informed decision, or at least to indicate an informed preference for a treatment option. 6,7 Usually, patients are medical laypeople, and physicians often overestimate the medical knowledge of their patients.…”