Boyd H. Davis PhD, Mary A. Nies PhD, RN, FAAN, FAAHB,
Mohammed Shehab PhD, and Dena Shenk PhD
Davis, B., Nies, M.,Shehab, M. & Shenk, D. Developing a pilot e-mobile app for dementia caregiver support: Lessons learned. Online Journal of Nursing Informatics (OJNI), vol. 18(1), Available at http://ojni.org/issues/?p=3095
Keywords: caregivers, dementia, e-mobile, recruiting, smartphones
This paper discusses the development of Story-Call, a pilot e-mobile multimedia App, or application, for community-based dementia caregiver support, designed to offer reassurance, information and services to caregivers, and facilitate supportive efforts and implementation of other interventions by nurses and therapists. The Story-Call research pilot was designed to deliver personalized story-telling support, dementia care information, and community resources via a mobile phone application to caregivers of community-dwelling persons with dementia. The primary focus of the pilot was to see at what extent caregivers could use the App with minimal training, and how it could increase their own well-being, defined here as resilience. The review of our pilot process ends with five recommendations for intervention expansion and implementation.
Community health nurses, care managers, advanced practice nurses, geriatric social workers and physical, speech and occupational therapists must work effectively with home-based dementia caregivers, if they are to implement person-centered or family-centered care. As (Capezuti and Hamers, 2013, p. 1153) say in their introduction to a special issue on improving the Care of Older Persons, “older adults and their family caregivers…together constitute a unit of care.” The crucial role of the family caregiver is characterized by (Lowson et al,, 2013) as being a ”conductor” who orchestrates family and outpatient caregiving, and who deserves empowerment and partnership with community-based nurses and therapists.
In the U.S., Alzheimer’s disease and the isolation it can produce imposes a heavy burden on informal caregivers of persons with dementia, and research indicates that informal dementia caregivers carry greater burdens than for other chronic diseases (Ory, 1999). Support programs promoting caregiver involvement and choice may significantly delay institutionalization (Spijker et al., 2008) as can increase community engagement (Cooper, Tandy, Balamurali & Livingston, 2010) and early use of community-based services (Gaugler, Kane, Kane & Newcome, 2005). However, not all caregivers reach out to community and nationally-available resources. The 2011 Pfizer-Gallup Wellbeing Poll (Mendes, 2011) noted that 72% of workers are providing care to a parent. Of the more than 15 million family caregivers for dementia, nearly half are employed full or part time and 55% are the primary breadwinner (Feinberg, Reinhard, Houser & Choula, 2011). They may want support at times other than when group meetings are scheduled or during daytime phone support, and rearrange work time to accommodate nurse or therapist visits. A further complication could be that the interventions or support presented may be outstanding, but not match the real goals of the family caregiver, who may be more interested in starting with coping strategies than with other dementia-related content (Hornillos & Crespo, 2012).
This paper discusses the development of Story-Call. A pilot e-mobile multimedia App, or application, for community-based dementia caregiver support, designed to offer reassurance, information and services to caregivers, and facilitate supportive efforts and implementation of other interventions by nurses and therapists. As an innovative time-saver, a mobile phone App could provide working caregivers greater social support and access to community/national resources.
Mobile technology allows providers to reach people who may be isolated and desire increased social support. We designed the Story-Call research pilot to deliver personalized story-telling support, dementia care information, and community resources via a mobile phone application to caregivers of community-dwelling persons with dementia.The project was grounded in the Resilency Model of Family Stress, Adjustment and Adaptation (Yeh et al., 2012). This model has three stages, Identification, Adjustment and Adaptation. It first seeks to identify (Identification) stressors affecting family life and then to identify strategies by which the family can first adjust (Adjustment) to a new and troubling situation, and finally use those strategies to adapt (Adaptation) to the troubling situation, springing back into a healthier, more positive mode of living.
Story-Call is a smart phone App which allows participants to watch, record, and rate stories of success with caregiving challenges. It draws from research on patient stories. Watching video-recorded patient stories on DVD has improved blood pressure for new patients with hypertension: 3-minute success stories by peers teach viewers about hypertension and encourage adherence (Houston et al., 2011a). Multiple websites offer digital storytelling to persons with diabetes (Toussaint, Villagrana, Mora-Torres, de Leon & Haughey, 2011; Greenhaulgh et al., 2011). Telephone support groups and multimedia interventions have been positively reviewed (Devor & Renvall, 2008; Marziali & Donahue, 2006) and cellphone video recording has been judged successful in quality for teaching situations (Gromik, 2010). More recently, Tremont, Davis, Bishop & Fortinsky (2011) have been running a national ADEAR/NLM (spell out first then enclose in brackets (ADEAR/NLM) trial on Psychosocial Telephone Intervention for Dementia Caregivers 2008-12. This offers caregivers 16 calls over 6 months from a trained researcher who will discuss the caregiving situation and provide support.
Carillo, Dishman & Plowman (2009) identified a wide range of technologies to support caregivers and persons with Alzheimer’s. According to the Pew Internet Trust (Lenhart, 2010), 59% of all adults are online using wireless technologies, including mobile phones. Mobile phones and apps are a part of the healthcare chronic disease landscape. For example, the Mobile Diabetes Intervention Study, a cluster-randomized clinical trial of mobile coaching for self-management of blood glucose in type 2 diabetes, reduced A1C over a year (Quinn et al., 2011). The Australian Alzheimer’s Association BrainyApp (http://www.alzheimersreadingroom.com) shows users how to improve brain health; multiple apps mentioned on their website exist as reminder systems for appointment and medications, for mapping a journey and for tracking the walker/driver with dementia.
Recent articles on smartphone use identify consistent trends. The literature review by Ozdalga & Ahujal (2012), examined smartphones used to track walking, wayfinding and heart rates and GPS tracking for patients with Alzheimer’s. One study found that usage in low and middle-income countries was predominantly reminder-based (Kaellander et al.,2013); few studies had clinical outcomes, and many tracking projects triggered privacy/security issues. Another study noted limitations to the use of smartphone apps because of their expensive development and irregular usage (Hebden, Cook, van der Ploeg, & Allman-Farinelli, 2012). A systematic literature review by Fiordelli, Diviani, & Schulz, (2013), found that half the studies applied text messaging to specific conditions, with little use of multimedia.
Based on the needs of caregivers of people with dementia, promising emerging technology, and evidence associated with the use of mobile applications in other chronic diseases, our team developed and conducted a proof of concept pilot study. The team included a linguist who investigates discourse of cognitively impaired persons and creates multimedia materials on dementia care communication; a nurse specializing in community-based health promotion with multiple projects on behalf of vulnerable populations; a software specialist who develops applications for mobile phones to include built-in data tracking capability, and researches social networks and security; a gerontologist who has built a large community network of professionals working with dementia in a range of sites and situations.
The Story-Call App is based on the construct of storytelling as a way to promote more healthful and resilient living:. Gubrium (2009) commented, that digital storytelling is an emerging research strategy for health promotion that fosters participation and agentive behavior. We adapted the four steps outlined by Houston et al. (2011b).The collection of video narratives, a review of narrative content, rating and editing, and pilot testing outlined by Houston et al was adapted to the format of a one-minute multimedia application to be seen and heard on the screen of smart phones. By sharing success in meeting challenges in dementia caregiving, caregivers could have their individual agency and resilience reinforced. They could feel connected to other caregivers, and through the smart phone App, could identify useful resources at any time and place of their own choosing.
The design for the App had the following requirements:
Participants who consented to try out the Story-Call App had to have a home Internet connection, as the App stored the participant-created videos and responses to videos by others behind double firewalls on the Internet. They agreed to keep the pre-programmed telephone for two weeks, and to accept a personal visit at home from the research assistant delivering the phones, and to allow her to administer two brief inventories pre and post recording of their stories and rating of their stories by others.
The App was designed to monitor, track and save all data to a doubly-firewalled server. Participants used the smartphone to access topics and record their stories, and then viewed and rated others’ stories.The videos submitted by the participants were reviewed by a researcher and only videos approved for content and viewability (visibility, audibility, clarity, and coherence) were posted for user reviews and ratings. By watching, reviewing and rating videos through smartphones, caregivers are able to share their stories and learn from other caregivers experiences.
Recruitment of participants proved to be slow and uneven.Working with the outreach officer from the area office of the Alzheimer’s Association, we contacted each family support group over a period of five months. Anecdotal comments collected by the Research Assistant included “I already have a support group.” However, when we contacted an adult day care center, its chief administrator, an alumnus of the gerontology program, was able to recruit seven potential participants in two days.
After telephone conversations with each potential participant, the Research Assistant recruited and gathered informed consent from five Anglo female volunteer caregivers, with an average age of 52, caring for home bound persons with dementia living in Charlotte, NC; all four care recipients were parents. They agreed to trial the preliminary version of an App preloaded on Android smartphones, to see if the App would be easy to use with minimal training from written or spoken instructions as noted in Figure 1 below.
Pre/post tests were administered using pencil and paper, by the Research Assistant which included the Zarit Short Burden Screen (Bedard et al., 2001), a shorter 4-question version of the 22-item revised version of the 1985 Zarit Burden Interview, and Kaye’s Gain Through Group Involvement Scale (Kaye, 1996).
One participant withdrew, citing nervousness about being photographed; the other 4 videos recorded a total of ten stories of how they handled these and other situations chosen from the 20 most popular topics listed on two online support group boards: taking a bath, calming the anxiety of sundowning, using the Internet to find an assisted living facility, and asking to go home. All 4 participants identified stress and strain as strong components of perceived burden, and felt that continuing to use Story-Call would enable them to handle stress and family relationships more effectively, and find community health care resources.
Though the sample was meant only for efficacy, high positive responses to the Kaye Scale suggest this is a signal of potential change worth pursuing with a larger sample for testing.
Participants chose topics and recorded their responses. For example, ‘Betsy,’ whose father lived in her home, selected two challenges and recorded her answers:
How do you handle it when the person keeps asking to go home?
Logic and repetition didn’t work. We often took him on a short drive announcing when
we’re back home.
How can you calm the anxiety of sundowning?
What worked the best was suggesting a walk, as exercise helps and also tires the body.
The mothers of “Carola” and “Bonni” were still living in their own houses, each of which was very close to the homes of their daughters, who spent time withthem at least every other day, and usually more often. Both Carola and Bonni were concerned about medications:
How do you handle the administration of medications?
Bonni: I took all of her meds away from her and call to remind her at the same time every day even when going to her house.
Carola: I prepare her meds on a weekly basis, and we say Yes these are all yours, they’re your dessert!
“Calla” responded to several questions, including one about how to handle a certain attitude her mother often showed:
How do you handle an attitude of “my way or the highway” – almost a stubbornness?
This happens when she’s depressed about something so I let her take her anger out on me, it usually takes 15 min – go with it and don’t get upset.
Currently, over 15 million Americans are unpaid caregivers for roughly 5.4 million persons with Alzheimer’s. According to the Alzheimer’s Association’s Facts and Figures (2012), older African-Americans and Hispanics are more likely than older Whites to have dementia, with a greater number of missed diagnoses. The annual incidence of Alzheimer’s and other dementias is projected to double by 2050, with a greater proportion of those affected being Black and Hispanic (a 600% increase). The costs for dementia related care are estimated at $200 billion for 2012.
While learning to access and use the App seems easy enough, recruitment of participants beyond the pilot proof-of-concept, particularly of African-Americans and Hispanics, will remain difficult. The very reasons for which the support is necessary make it difficult for caregivers to take on what can be perceived as an additional task. The need exists because working caregivers typically have limited access to information and report feeling isolated with inadequate social support; others cannot attend community support groups or training programs because meeting places are inaccessible, or they have no alternative help for the care recipient (Bank, Argüelles, Rubert, Eisdorfer & Czaja, 2006). They may want support at times other than when group meetings are scheduled or through daytime phone support. As mentioned above, both age and language may complicate matters further. In addition, the two evaluation tools show engagement but do not pinpoint where the intervention may need adaptation before a larger implementation.
Guided by the commentary on what features of pilot studies are most useful in Conn, Algase, Rawl, Zerwic & Wyman (2010), we have identified five lessons we have learned from this pilot:
If we are to conduct responsible evaluation, we need to do the following: Increase the number of validated tools by which to measure caregiver response and build them into the App as radio-button ‘surveys’ for tracking and analysis; expand the current user-survey of the App’s usability and sociability. Additionally, a script needs to be developed for the process by which researchers evaluate usable stories for the Story-Call archive.
Recruitment, particularly of minority participants, is difficult and requires community-based contacts who can advise on how best to recruit and retain participants. Accordingly, a project such as ours must develop a Community Advisory Committee to review recruitment strategies and materials, and form relationships with community groups. This committee should include representatives of nursing case managers groups, community health nurses, geriatric social workers, and gerontologists as well as community leaders and lay persons involved with aging, dementia and health.
Successful recruitment for a technology-based project will need informative and reassuring materials that focus on specific features such as saving time and retaining privacy. Accordingly, a project such as Story-Call will need to develop 1-page, high-graphics flyers soliciting participation in the project for distribution to existing support groups and services, proprietary and church-supported adult day care sites, and in high-minority traffic grocery stores. Flyers for sites and areas predominantly attended by Hispanic/Latino elders will need, of course, to be in Spanish. Participants may contact team members directly, or ask another person to make the contact by telephone.
Part of the rationale for having a smart phone App is to be able to link users to each other and also to wider community resources. The project will need to expand listing of local and regional aging and dementia care resources, and incorporate them into the App as radio-buttons or links.
Building a field of dreams does not guarantee the arrival of a group of users, except in the movies. Outreach via presentations and publications in professional venues are essential. It is also important to develop online and print materials tailoring discussion of the utility of the App to nursing and therapeutic practice, particularly as the intervention reinforces resiliency among family caregivers.
A pilot study has ramifications for subsequent innovation and design. Conn et al., (2010, p. 996), identified a number of characteristics in pilot studies that can be shared with a larger audience; they fall into these five types: Sampling intervention, intervention delivery, measures, study implementation, and study outcomes. While our pilot produced desired outcomes, its further implementation needs expansion in each of those types, if we are to succeed in developing and implementing informatics interventions that are easy to administer and that can reliably show benefits to users at several levels.
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Boyd is a Bonnie E. Cone Professor of Teaching in Applied Linguistics/English and Professor of Gerontology at University of North Carolina – Charlotte. Her areas of interest include sociohistorical linguistics; Alzheimer’s speech; narrative, pragmatics and stance; and digital collections of speech. Her most recent books are Pragmatics in dementia discourse (2013, with Jacqueline Guendouzi of SE Louisiana State); Alzheimer talk, text and context (Palgrave 2009; 2005) and Fillers, pauses and placeholders (Benjamins 2010, with N. Amiridze, M. Maclagan). Her fifteen-year collection of conversational interviews with persons with dementia is in the online Carolinas Conversations Collection, sponsored by the National Libraries of Medicine, for which she is Co-PI.
Mary is the Dean and Professor at Idaho State University School of Nursing in Pocatello, Idaho. Dr. Nies is a behavioral nurse scientist with a research focus on community interventions promoting health in vulnerable populations. Her textbook, Community/Public Health Nursing, now in its fifth edition, is known for its upstream and social justice approach. Nies received the American Public Health Association’s Ruth B. Freeman Award, Sigma Theta Tau International’s Excellence in Mentorship Award from Rho Chapter, and Midwest Nursing Research Society’s Public Health/Community Health Experienced Investigator Research Excellence. Nies serves on the American Journal of Health Behavior editorial board and is a member of Sigma Xi.
Mohammed is an Associate Professor of Software and Information Systems Department at the University of North Carolina at Charlotte. He received his PhD degree in Electrical and Computer Engineering from Purdue University in August 2007. His research and teaching interests are in the broad areas of network and information security. In particular, his research focuses on advancing the state of the art in the design and implementation of distributed access control protocols to cope with the requirements of emerging distributed, Web Services, Social Networks, Database Systems and P2P environments. Dr. Shehab is also interested in research topics related to security, privacy for 3rd party applications and online social network apps, and usable security.
Dena is Director of the Gerontology Program and Coordinator of the Graduate Program at the University of North Carolina at Charlotte where she is a Professor of Anthropology. Her broad research interests are diversity within the older population based on gender, culture and environment with an emphasis on individual expectations and experiences of aging. Her current research focuses on person-centered care for people with dementia and the direct care workers and family members who care for them, the experience of natural disasters by older adults, and the use of photographic methods.