key: cord-0765505-rxmxi6rz
authors: LoBuono, Dara L.; Shea, Kyla S.; Tovar, Alison; Leedahl, Skye N.; Mahler, Leslie; Xu, Furong; Lofgren, Ingrid E.
title: Acceptance and perception of digital health for managing nutrition in people with Parkinson's disease and their caregivers and their digital competence in the United States: A mixed‐methods study
date: 2021-11-11
journal: Health Sci Rep
DOI: 10.1002/hsr2.412
sha: d2b28f4b76478bb20fe4b443cb0d5ce4ab81fee7
doc_id: 765505
cord_uid: rxmxi6rz

BACKGROUND AND AIMS: This mixed‐methods study examined participants' acceptance and perception of using digital health for managing nutrition and participants' digital competence. The results will be formative for making digital nutrition education more effective and acceptable for people with Parkinson's disease (PwPD) and their informal caregivers. METHODS: Qualitative data were collected through in‐person semi‐structured, dyadic interviews, and questionnaires from 20 dyads (20 PwPD and their caregivers) in the Northeastern United States and analyzed throughout the 2018 to 2019 academic year. Interview transcripts were deductively coded using the framework analysis method. Phrases related to acceptance of digital health were sub‐coded into accept, neutral, or reject and those related to perceptions of digital health were sub‐coded into perceived usefulness, perceived ease of use, and awareness of digital health. Quantitative data were analyzed using independent samples t tests and Fisher's exact tests. Qualitative codes were transformed into variables and compared to digital competence scores to integrate the data. An average acceptance rate for digital health was calculated through examining the mean percent of phrases coded as accept from interview transcripts. RESULTS: Twenty‐five of 40 (62.5%) participants used the internet for at least 5 health‐related purposes and the average acceptance rate was 54.4%. Dyads rejected digital health devices if they did not see the added benefit. The majority of participants reported digital health to be useful, but hard to use, and about half felt they needed education about existing digital health platforms. There was no difference in digital competence scores between PwPD and their caregivers (28.6 ± 12.6). CONCLUSION: Findings suggest that dyads accept and use technology but not to its full potential as technology can be perceived as hard to use. This finding, combined with digital competence scores, revealed that education is warranted prior to providing a digital nutrition intervention.

digital competence scores, revealed that education is warranted prior to providing a digital nutrition intervention.

caregivers, digital health, mixed methods, nutrition education, Parkinson's disease

Parkinson's disease (PD) is an incurable, progressive, neurodegenerative movement disorder that traditionally occurs in the second half of life. 1 Over 900 000 Americans are diagnosed with PD, 2 and it costs the United States over $14 billion annually. 3 Sequelae, or conditions that result from PD, such as postural instability, muscle rigidity, resting tremors, cognitive decline, changes in taste and smell, and constipation, 1 can compromise dietary intake and nutritional status. 4 In spite of these changes highlighting the critical nature of a nutrition professional, it is uncommon to integrate nutrition professionals into the healthcare team for PD. 5 People with Parkinson's disease (PwPD) can have limited access to healthcare providers due to sequelae, age, and location, even with the presence of a caregiver. 6, 7 The majority of informal PD caregivers spend up to 40 hours per week providing care. 8 An improved healthcare model that addresses nutrition and includes the caregiver in an accessible format is needed to better facilitate PD management. Digital health broadly describes technologies that better manage and track health status 9 and include videoconferencing, smart phones, internet applications, wearable devices, and online social networks. 10 PwPD could benefit from digital health technologies to increase access and enhance quality of care due to their limited mobility, 11, 12 and the need for regular visual assessment. 6 Two digital health mediums extensively used for managing PD include telehealth (ie, interactive videoconferencing) 13, 14 and wearable devices, (ie, technology that collects continuous data overtime). 15 For PD management, telehealth offers healthcare providers with a way to get visual cues of patients that make the visit more objective, 16, 17 and provide social support for PwPD and caregivers. 18, 19 Economic benefits and high patient satisfaction have been reported by both PwPD and caregivers. 14, 20 Speech therapy via telehealth saved each caregiver 48 hours of time, 92 hours of work time, and over $1000. 21 Wearable devices collect continuous data to provide a more realistic portrayal of PwPD's daily behaviors and clinical outcomes overtime compared to subjective data or cross-sectional assessments. 15 Organizations, including the Movement Disorder Society, promote using clinically relevant and patient-centered digital health to complement in-person health services and provide reliable health interventions. 22, 23 Therefore, the development of digital nutrition services must include the needs and preferences of informal caregivers and PwPD as both are confronted with changes in roles and responsibilities, and planning for the trajectory of PD. 22, 24 Research indicates that caregivers and PwPD are receptive to technology, especially if there is added value, such as improving disease management. 25, 26 However, research has not directly examined the use of digital health for managing nutrition-related PD concerns. The purpose of this mixedmethods study was to examine PwPD's and their caregivers' acceptance and perception of digital health for managing nutrition and health. This study also aimed to describe participants' digital competence in order to help inform digital nutrition education for PwPD and their caregivers.

The current study was part of a larger, cross-sectional study, which examined technology preferences and completed comprehensive nutrition assessments of PwPD and their informal caregivers through a home visit and series of phone interviews. A mixed-methods, convergent, parallel 27 research design was used to collect, compare, and synthesize qualitative and quantitative data from the same sample of PwPD and their informal caregivers to inform the developmental stages for a digital health service by obtaining a better understanding of participants' experiences with digital health, as well as their needs and preferences toward using technology for health-and nutritionrelated purposes. 22, 28 Ethical approval was provided by the university's Institutional Review Board (HU1819-001).

This study was based on two theories. The inclusion of informal caregivers is based on the emerging middle-range theory of transitions. 29 This theory elucidates the change from one state or condition to another, and it includes life development stages, like disease progression and becoming an informal caregiver. Collecting data from PwPD and caregivers fills a gap in the literature to provide a more complete perspective to understand the transition dyads specific to PD face. 29 The technology acceptance model (TAM) provides a basis for understanding external factors that influence end users' perceptions, attitudes, and intentions to use technology. 30 The model hypothesizes that perceived usefulness and perceived ease of use jointly determine acceptance, by influencing intention to use and actual technology use. 30 2.3 | Sampling, recruitment, and eligibility Study recruitment and data collection occurred between October 2018 and April 2019. Participants were recruited via emails, flyers, and announcements at PD support groups. Prior to the first study visit, dyads were screened for eligibility; both PwPD and their caregiver had to be community-dwelling, 18+ years old, English-speaking, and both had to participate. All participants needed to score ≥18 on the Telephone Montreal Cognitive Assessment (T-MoCA), a cognitive screening tool. 31 At the beginning of the home visit, both PwPD and caregivers completed the informed consent process and signed consent forms.

Of the 25 dyads that expressed interest, 18 were eligible and 2 of these dyads included couples who were both living with PD and identified as each other's informal caregivers and were double counted as a PwPD and a caregiver. Five dyads did not continue due to scheduling conflicts or low T-MoCA scores. There were 20 dyads (20 PwPD and their 20 informal caregivers) from Rhode Island, Massachusetts, New York, and Connecticut in the final analyses.

Ourstudy sample was powered to reach data saturation for the qualitative data; based on prior qualitative research among PwPD and caregiver dyads, the point of saturation was expected to be 20 interviews. [32] [33] [34] [35] [36] 

The PwPD and their informal caregiver completed the semi-structured interviewers together. The 24-question moderator guide (Appendix I, Supporting information) informed by the previous literature and the research team, was organized to capture three main domains: PD and diet, accessibility of nutrition and health information, and digital health for PD. 25, [37] [38] [39] [40] [41] [42] [43] From these domains, participants' acceptance and perception were assessed. Prior to starting the study, interviews were pilot tested with two dyads and questions were modified based on participant feedback. Interviews were conducted in the participants' homes by the lead researcher and audio-recorded using a digital recorder. The mean interview length was 39 minutes (range 21-64 minutes). Operational definitions of terms (technology, digital health, smart phones, smart watches, apps, videoconferencing) were provided during interviews. Photo prompts were used to help describe different technological devices and digital health tools.

Qualitative data were analyzed using deductive and inductive reasoning. Transcripts were deductively coded using the framework analysis method, which is a seven-stage, systematic procedure. 44 Transcripts were also inductively coded using Colaizzi's Strategy in Descriptive Phenomenology 45 to identify emerging themes; this interpretative approach draws an understanding of participants' "lived experiences." 46 After recordings were transcribed verbatim, the lead researcher checked transcripts for accuracy and divided transcripts into three batches (stage 1). The lead researcher and a trained research assistant analyzed one batch at a time. Before coding individually, the researchers read through an entire batch of transcripts and developed a list of initial themes and then coded a priori (stage 2). Both researchers coded one transcript from each batch independently and in duplicate (stage 3). Coding was compared and reconciled for these three transcripts. There was strong agreement between the researchers on the preliminary coding. During this discussion of preliminary coding, the two researchers developed a working analytical framework and agreed upon which codes to use on the remaining transcripts (stage 4). The transcripts were uploaded to NVivo12 (QSR International Pty Ltd, Australia) and coded separately by the lead researcher and research assistant. The inter-coder reliability was >80% (acceptable) for each overarching theme. 47, 48 The two researchers met to discuss coding differences and came to consensus.

The research committee and the lead researcher met to collapse and finalize themes (stage 5). Data were then charted into framework matrices using NVivo12 to display codes within each theme (stage 6).

The number of phrases coded within themes was summed to calculate frequencies and percentages. Data were interpreted, and connections related to digital competence and technological preferences of PwPD and their caregivers were made (stage 7). By the 20th interview data saturation was obtained as there was a redundancy in the data collected in relation to the themes identified.

To describe participants, PwPD and caregivers individually completed demographics and medical history surveys, along with the Dietary Screening Tool (DST, Appendix II, Supporting information). 49 The DST is a semi-quantitative questionnaire with 25 multiple choice questions. 49 It is validated and used to identify dietary patterns and nutrition risk in older adults, scores were categorized as: at risk (<60), possible risk (60-75), and not at nutrition risk (<75). 49 Participants individually completed questionnaires around digital competence, technology use, and frequency. To assess digital competence among individual participants, questions were adopted from Caregiver and PwPD group variables were analyzed using independent sample t tests and Fisher's exact tests to ensure the groups were comparable.

Acceptance of digital health was analyzed by assessing current technology and digital health usage from questionnaires and through themes coded from qualitative interviews. The theme acceptance contained three sub-themes: accept, neutral, and reject, and phrases coded within each sub-theme were counted and totaled. The total number of phrases coded as accept was transformed into a continuous variable, "percent acceptance rate per dyad" by dividing by the total number of phrases coded across the three acceptance subthemes to calculate acceptance rates among each dyad. A mean of the percentages was calculated to derive the mean dyadic acceptance rate among each dyad. The total number of phrases coded as hard to use were transformed into a continuous variable, "percent of phrases coded as hard to use per dyad," by dividing the total number of phrases coded across the three ease of use sub-themes to calculate the percentage of phrases coded as hard to use in each dyadic interview. Codes from the qualitative interviews were tabulated and then reported as percent and frequencies. A contingency table of frequencies derived from perceptions and acceptance (qualitative data) and digital competence scores (quantitative data) were created and interpreted to describe the population and preferences for a digital health intervention ( Table 4 ). The acceptance rate and the percent of phrases coded as hard to use for each dyad were analyzed as continuous variable. A Pearson correlation was used to explore if there was an association between the variables: "percent of phrases coded as hard to use per dyad" and "percent acceptance rate per dyad."

Almost all participants identified as Caucasian with the exception of one PwPD identified as Latinx ( Table 1 ). The majority of caregivers were spouses/partners (85%), while two caregivers were children and one was a friend; 80% of dyads lived together.

All dyads had access to a computer and internet connection at home. 

The perception of digital health category (n = 133 phrases) contained two themes: perceived usefulness and perceived ease of use ( PD10: I just type it in and whatever comes up I skim through, and some of it seems valuable and reliable, and some of it seems like a marketing scheme.

The sub-theme useless captured when participants saw little value or benefit from using technology. These participants may have also found nutrition interventions to be useless. For example:

PD04: Some of [technology] is very useful but the majority of it is junk.

Dyads were asked to rate how important they felt it was to follow an eating plan for PD; 45% of dyads agreed that it was important (n = 10 PwPD, n = 8 CG), while 35% (n = 6 PwPD, n = 8 CG) reported they were unsure, were neutral, or felt the question was not-applicable because they had not thought about the importance of healthy eating for PD.

Perceived ease of use. The theme perceived ease of use contained three sub-themes: easy to use, neutral, and hard to use. 

There was no difference in total digital competence scores between PwPD and caregivers (27.5 ± 12.8 vs 29.7 ± 12.6). The mean score translated to a 63.6% competence level (Table 1 ). Responses to individual questions from the digital competence questionnaire are summarized in Table 3 . There was no difference in scores between PwPD and caregivers and over 80% of participants felt comfortable finding information, reading or downloading news, seeking health information, and sending emails. Note: Dyads are presented in order from lowest to highest "percent acceptance rate per dyad". "Percent acceptance rate per dyad" reported which was calculated by dividing phrases coded as accept by total number of phrases coded related to accept, neutral and reject for each interview. The "percent of phrases coded as hard to use per dyad" in each interview was calculated by dividing phrases coded as hard to use by total phrases coded related to ease of use. Digital Competence scores are reported for both PwPD and caregivers and are reported as total score (percentage).

Individual digital competence scores among PwPD and caregivers, the acceptance rate for each dyad, and percent of phrases coded as hard to use are displayed side-by-side (Table 4) . Overall, it appears that dyads with higher digital competence scores had higher digital acceptance rates for technology. These acceptance rates could be influenced by the fact that within several dyads, one person was more comfortable using technology than the other. For instance, within Dyad 01, the PwPD had a much higher digital competence score compared to their caregiver (62.2% vs 17.8%), which may help explain an acceptance rate of 58% and 50% of phrases being coded as hard to use. There was a negative, significant association between the variables: "percent acceptance rate per dyad" and "percent of phrases coded as hard to use per dyad" (r = À0.522, P = .018). The mean dyadic acceptance rate calculated from dyadic interviews was 54.4%. Research should also explore the facilitators and barriers for digital health adoption.

Our study design was chosen to promote patient-and caregivercentered care for managing PD symptoms and justifies nutrition professionals and caregivers as important members of the healthcare team. Additionally, the utilization of mixed-methods study design provided an in-depth understanding of dyads' perception, acceptance, and current level of digital competence. The use of semi-structured dyadic interviews is a strength, as dyadic interviews promote interaction between participants to help provide detailed information with regard to their experience on the topic of interest. 61 Findings from this study can be incorporated in the TAM and the emerging middle range theories of transition.

This study had several limitations. Our participants were educated, White, had access to technology, and were from the northeast region of the United States. As a result, findings may not be generalizable to PwPD in other regions of the country or from marginalized populations. Another limitation is that though items were adopted from the European Union Wide Indicators of Digital Competence, which has been used to create a digital competence framework, 62 it is not a validated instrument. Finally, requests for disease stage were sent to physician offices for personal health information, but this information for all PwPD was not obtained.

Results from this study can be used to help design and implement an effective digital nutrition service that is tailored to PwPD and care-

givers to improve quality of life. The benefits of utilizing technology and healthy eating must be clearly communicated to PwPD, caregivers, as well as the medical community and health insurance companies for this service to be accepted. Our findings suggest that training of the service should be provided prior to implementing an intervention. Experts suggest when designing digital health interventions specifically for PwPD, developers should consider both PwPD and caregiver views, needs and preferences. 22, 55 These remote services can help increase access to nutrition information among PwPD and caregivers and have the potential to improve health-related quality of life, disease and caregiver burden.

This mixed-methods study focused on describing the acceptance and perceptions of digital health to manage nutrition for PwPD and their caregivers, and their level of digital competence. Results indicated mixed acceptance rates for technology and digital health platforms among dyads, possibly due to many participants perceiving digital health as useful, but hard to use. Digital competence scores suggested dyads participating in a digital health nutrition intervention will need some training prior to study participation. Findings from this study complement existing literature regarding digital health for managing PD and help to better understand the opportunity to use digital health as an avenue to include nutrition and caregivers in the PD care plan.

Future studies should explore digital health and technology as tools to provide evidenced-based nutrition and health knowledge to PwPD and caregivers. Prior to launching a digital health service to manage nutrition, dyads will need training and technical support.

reported; that no important aspects of the study have been omitted;

and that any discrepancies from the study as planned have been explained.

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.

Dara L. LoBuono https://orcid.org/0000-0003-4423-5680

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Acceptance and perception of digital health for managing nutrition in people with Parkinson's disease and their caregivers and their digital competence in the United States: A mixed-methods study

The authors would like to thank the following research assistants for their contributions: Emma Davidson, Sarah Dobiszewski, Brittney Seck, Jayca Payne, and Janette Bedoyan. All persons listed have given permission to be included in the acknowledgement section.

There were no external funding for this study. The study was funded by the Department of Nutrition and Food Sciences, University of Rhode Island, Kingston, RI.

The authors of this manuscript declared no conflict of interests with respect to research, authorship, and /or publication of this manuscript. Dara LoBuono had full access to all of the data in this study and takes complete responsibility for the integrity of the data and the accuracy of the data analysis."

Dara L. LoBuono, the lead author, affirms that this manuscript is an honest, accurate, and transparent account of the study being