key: cord-0854757-m0cjr848
authors: Portz, Jennifer Dickman; Ford, Kelsey Lynett; Doyon, Katherine; Bekelman, David B.; Boxer, Rebecca S.; Kutner, Jean S.; Czaja, Sara; Bull, Sheana
title: Using Grounded Theory to Inform the Human-Centered Design of Digital Health in Geriatric Palliative Care
date: 2020-06-29
journal: J Pain Symptom Manage
DOI: 10.1016/j.jpainsymman.2020.06.027
sha: a7a13d5a94181521f7b81a7a344e272aa5e42dca
doc_id: 854757
cord_uid: m0cjr848

CONTEXT: Digital health offers innovative mechanisms to engage in palliative care, yet digital systems are typically designed for individual users, rather than integrating the patient’s caregiving “social convoy” (i.e. family members, friends, neighbors, formal caregiving supports) to maximize benefit. As older adults with serious illness increasingly rely on the support of others, there is a need to foster effective integration of the social convoy in digitally supported palliative care. OBJECTIVES: Conduct a qualitative study examining patient, social convoy, and health care provider perspectives on digital health for palliative care to inform the design of future digital solutions for older adults with serious illness and their social convoy. METHODS: Grounded theory approach using semi-structured interviews (N=81) with interprofessional health care providers, older adults with serious illness, and their social convoy participants at home, clinic, or Zoom. Interviews were conducted using question guides relevant to the participant group and audio recorded for verbatim transcription. Two coders lead the inductive analysis using open and axial coding. RESULTS: Thematic results aligned with the human centered design framework, which is a participatory approach to the design process that incorporates multiple user stakeholders to develop health solutions. The human centered design process and corresponding theme included: (1) Empathy: Patient, Caregiver, and Provider Experience reports participants’ experience with managing serious illness, caregiving, social support, and technology use. (2) Define: Reactions to Evidence-Based Care Concepts and Barriers illustrates participants’ perspectives on the domains of palliative care ranging from symptom management to psychosocial-spiritual care. (3) Ideation: Desired Features reports participant recommendations for designing digital health tools for palliative care domains. CONCLUSION: Digital health provides an opportunity to expand the reach of geriatric palliative care interventions. This paper documents human centered preferences of geriatric palliative care digital health to ensure technologies are relevant and meaningful to health care providers, patients, and the caregiving social convoy.

Family, loved ones, and formal caregivers provide care for nearly 1 million older adults that die each year from a serious chronic illness. 1 These older patients experience significant physical and psychological symptom burden and progressive dependence on their network of care, 2 referred to as a social convoy. Social Convoy Theory is a well-established framework [3] [4] [5] for understanding the relationships of individuals in a group of people with whom they give and receive social support over the life-cycle. The convoy can include informal supports such as family members, friends, and neighbors, and formal supports such as professional caregivers that are trained and paid to provide care.

Palliative care provides an interdisciplinary and patient-family centered approach to address the physical, psychological, emotional, and spiritual suffering for patients and their convoy. 6 Digital health, 7 including tele-heath, wearable devices, and mobile applications (mHealth), provides modern opportunities for patients and their convoy to engage in palliative care. [8] [9] [10] An estimated 53% of convoy members have used a technology to help with caregiving and 12% are interested in learning how to use new technologies to support the health of their loved ones. 11, 12 However, digital systems are typically designed for individual users, rather than integrating the patient's convoy to maximize benefit. As older adults with serious illness increasingly rely on the support of others, there is a need to foster effective integration of the convoy in digitally supported palliative care.

Recently the pandemic of the Novel Coronavirus Disease 2019 (COVID-19) shifted society's use of digital health, specifically synchronous telehealth, to provide palliative care and support convoys' care for older adults while maintaining social distancing. 13, 14 While reserving synchronous telehealth for specific consultations, other digital health tools such as symptom monitoring and assessment apps, wearables, and digital education may offer clinical and psychosocial supports for older adults with serious illness and those caring for them.

The aim of this study seeks to use heart failure (HF) specific palliative care as a model to investigate the design of digitally supported palliative care by older users and their convoy. HF is an excellent model, as it disproportionately affects older adults resulting in frequent hospitalizations and poor quality of life. 15, 16 Older adults with HF are at increased risk of COVID-19 complications and mortality, 17 and there is a need for HF specific digital health to monitor symptoms and assess palliative care needs. 18 This qualitative work will inform the design of the Social Convoy Palliative Care (Convoy-Pal) digital health intervention, currently in development, by summarizing patient, convoy, and health care provider feedback. Such work also seeks to produce a human-centered designed framework useful for researchers, clinicians, and industry partners to design digitally supported palliative care solutions for both older adults and their convoy during times of COVID-19 social distancing and beyond.

A grounded theory 19 methodological orientation was used to inductively describe patient, social convoy, and provider perspectives regarding digital health interventions to support palliative care needs in the setting of HF. The purpose of using a grounded approach was to develop a theoretical framework for integrating the social convoy in the design and context of digital health for older adults with serious illness. Our work was informed by the Consolidated Criteria for Reporting Qualitative Research (COREQ) (Appendix A), 20 and methods were approved by the Colorado Multiple Institutional Review Board (COMIRB).

Study participants were identified using both purposeful and snowball methods of recruitment. 19 The inclusion of patients, the patient convoy, and health care providers ensured 21 incorporation of diverse perspectives into the design process.

Patients. Patients were identified from the health system's electronic medical record, Epic. Inclusion criteria included being a patient with HF, ≥65 years of age, with ≥2 discharges for primary diagnosis of HF within the last 12 months. Patients with a diagnosis of dementia, preparing for transplant or left ventricular assist device (LVAD), and/or those unable to provide informed consent were excluded. We mailed eligible patients a letter introducing the study and requesting that patients "opt-out" by phone if they did not want to be contacted. Patients were contacted by phone, screened for eligibility, and invited to participate.

Convoys. Patient convoys were identified during patient interviews by asking patients "Could you please tell us all the people who help you with your heart condition or your daily life?". Follow up probes were used as needed. With the patient's permission, potential convoy participants were contacted for an interview via phone, email, and text message. Since the average social convoy size of older adults in the United States is approximately 3 people, 22 the research team aimed to interview at least 2 convoy members but no more than 6 per patient.

Convoy members under the age of 15 or who were unable to provide informed consent were excluded.

Health Care Providers. Health care provider participants were identified via the palliative care consult and advanced heart failure care teams. Health care providers were recruited and consented through email. Specific recruitment efforts are documented elsewhere. 23

We developed three semi-structured interview guides targeting each sample group: patients, convoy, and health care providers (Appendix B). The guide was first drafted by the principle investigator (J.D.P) based on our previous qualitative work with older adults regarding digital health 24 and refined by geriatric, palliative care, and digital health experts (R.B., DB, S.C., and S.B.). During the interviews, we asked participants to first reflect on their experience managing HF or treating patients with HF. We then asked participants to consider potential digital health solutions that might be helpful in a palliative care setting. We also asked participants to "think aloud" while navigating wireframes, i.e. images of potential digital features and functions, and to express opinions about palliative care content.

We invited participants for 60-minute interviews to accommodate health care provider and convoy members schedules. However, the question and answer section of the interview averaged 44.6 minutes and ranged from 20-minutes to 90-minutes. The shortest interview was due to the patient's health and fatigue, while the longer interviews allowed for further exploration of participants' experience and ideas. Interviews were held at a location convenient to the participant including: 1) in person at the patient/family home, 2) in person at the health clinic, 3) the provider's office, or 4) using university-supported Zoom conferencing depending. All data collection occurred October 2018-September 2019. Interviews were audio recorded. Field notes and researcher memos were maintained throughout data collection to assist in data interpretation.

All audio files were professionally transcribed verbatim prior to analysis. The unit of analysis (word, sentence, paragraph) was determined by the analytic team using an iterative 25 and inductive approach. 19 We managed our data with DeDoose software (SocioCultural Research Consultants, LLC, 2018). Two data coders (KF, KD) used a combination of open and in-vivo coding to develop an initial codebook. 26 The codebook included a list of initial codes, code meaning, and criteria for using the code. Over half of the transcripts were double-coded (55%) and coders met with the interview team weekly throughout the data collection process to review codes, clarify code definitions, and reconcile coding disagreements. The grounded theory approach involved a constant comparison method of analyzing data. A second cycle of focused coding, known as axial coding, collapsed initial codes into umbrella categories. 26 These categories were based on patterns in the data and to form themes that identify prototype design to incorporate preferred palliative care content. The research team established a coding tree, deriving themes until reaching thematic saturation. 19 Our confidence in establishing saturation is based on several factors including: a sample size consistent with qualitative inquiries regarding older adults and digital health, [27] [28] [29] initial coding during data collection, and inclusion of multiple analytic perspectives, e.g. having a coder unaffiliated with the interview process and triangulation of transcript data with field notes and memos from three interviewers, to identify "new" concepts. 21 Additionally, the principle investigator established monthly meetings with palliative care and HF experts as a form of member checking. 21

We contacted 231 potential patient participants; 13.9% agreed to participate, 31.6% declined participation, and 54.5% were unable to contact. We identified 49 potential convoy participants from patients; 63.2% agreed to participate, we were unable to contact 36.7%, and only 1 convoy member declined participation. A total of 81 interviews were transcribed for analysis. Table 1 describes the demographics for patients (n=30) and their convoy (n=31). The age range varied for patients (66-91 years old) and convoys (31-80 years old). Social convoy participants were primarily adult children (28.8%) but also included spouses, siblings, grandchildren, and friends. We contacted 25 potential health care provider participants based on the health system's palliative care and advance heart failure care teams; 21 agreed to participate, 1 later declined, and 4 were unable to contact. The health care provider sample (n=20) included palliative care physicians and cardiologists (n=4), advanced practice nurses (n=7; 2 DNP, 5 NP), registered nurses (n=3), spiritual providers (n=2; MDiv), art/music therapists (n=2), and social workers (n=2). The majority of providers identified as female, white, and had on average 9.78 (±3.75) years of experience working with seriously ill older adults.

We initially used a grounded theory approach to develop new framework to inform social convoy digitally supported palliative care solutions. However, through the interview and analysis process, findings substantially aligned with design thinking, 30,31 particularly human-centered design framework (Figure 1 ). Human-centered design is a participatory approach to the design process that incorporates multiple user stakeholders to develop health solutions. The model outlines a process to create digital solutions easy to use, useful, and meaningful to users by capturing the perspective of people experiencing the problem in which a solution is intended to solve. The first steps of the process are to better understand the users and what is most important to them (Empathy) and to identify specific needs outlined by both users and scientific evidence (Define). These background phases allow for productive brainstorming around features and functions for possible tools (Ideation). Through this participatory approach, a human-centered prototype can then be developed and tested. While we did not consider human centered design apriori, themes generated from this qualitative study highlight the first three 

This theme captures participants' experience with managing serious illness. Participants reported experiences about their health, social support, and technology use. Table 2 illustrates exemplar quotes.

Health Experience. Patients, convoys, and providers discussed the difficulty of living with major medical conditions, function limitations, and reduced well-being and engagement in pleasurable activities. Although we targeted patients with HF, our patient participants indicated that "heart failure is the least of [their] worries". Patient participants articulated that they managed multiple chronic conditions (MCC), including diabetes, cancer, neuropathy, among others. Patients were often more concerned about other health conditions, the decline of their health generally, and were largely content or neutral with their HF specific care.

Social Support. Patients reported that they rely on social support and family caregivers in diverse ways. Many reported their convoy members manage the logistics of health care, daily living activities (depending on patient's function), and monitor daily HF and MCC management.

Most patients and caregivers reported different and conflicting perspectives. For example, patients commonly indicated that they did not want to bother their family while the social convoy often craved more information about the patient's status. Both patients and social convoys described the complex balance between receiving care from the convoy and the need for patients to feel self-sufficient and maintain independence. Health care providers reported the importance of convoy involvement highlighting their contribution to the patient's overall health and adherence to HF care plan. They also recognized the social, environmental, and logistical challenges convoys experience in providing care for their loved ones. However, although patients and their convoys reported focusing their caregiving on daily needs such as transportation, coordinating medical appointments, and managing medications, leveraging social support to address important daily logistics was not reported as a barrier.

Technology Use. Some patients indicated a reluctance to use newer-technology, such as text or sensor-based applications, with preference for face-to-face options or more wellknown technologies, such as phone calling. Most patients reported less interest in technology use, unlike convoy members and provider participants. Convoys were skeptical of their loved ones using technology. Additionally, incongruence was observed across participants when probed for data sharing access, finding providers and convoys reported in support of data sharing whereas patients were less enthusiastic. After probing, patients and convoys describe the value in sharing reports and app activities with each other, however this was not universal.

Patients, convoy, and provider participants all acknowledged that technology use and technology-literacy varies among patients and convoys, reflecting a generational gap in the culture of technology use and communication differences between participants.

Domains of palliative care generally include quality of life assessment, symptom management, family support including bereavement or grief, spiritual care, psychosocial support, decision support, value-based goal setting, and patient/family education. Participants provided feedback related to receiving and delivering these components of care via digital health. Table 3 illustrates exemplar quotes from the theme. Overall, participants indicated that patients relied on their convoy for all of these palliative care domains and emphasized the need to increase patient-convoy communication. The concept of using digital tools to connect the full convoy and communicate about palliative care needs in a new way was of most interest to participants.

Symptom Monitoring. Overall, providers, patients, and convoys report the importance of having a way to self-monitor HF care. However, patients tended to be divided on their willingness to use digital tools to manage their care. Other patients mentioned they would be willing to use technology for symptom monitoring if they had additional technical support. Other patients already use or are interested in using a variety of technology to track their HF, ranging from activity trackers, patient portals, to sophisticated monitoring equipment. Providers reported interest in ways to encourage patient reported outcomes and remote patient monitoring, however still questioned their clinical significance with vast amounts of real-time data.

Psychosocial Support. Many patients and convoys reported being positive and optimistic about their psychosocial wellbeing. However, some disclosed challenges around mental illness, social isolation, anxiety and depression. There were mixed reviews on how to incorporate psychosocial support using technology. Some participants reported negative reactions to virtual assessments while others reported it as a useful way to check-in on patients or caregivers. Many patients expressed this support 'wasn't for me' but might be useful for patients or caregivers 'like me'. 

Participants were asked to brainstorm ideas on the palliative care domains and offer recommendations for future technology with older adults, caregivers, and palliative care.

Suggestions are outlined in Table 4 .

Both patients and convoys recommended similar desired features related to content and technology interface, stressing the importance of tailoring and personalization. They reported interest in syncing palliative care tools to patient portals, and the importance of an easy-to-use interface with large fonts and accessibility. For example, many participants recommended the technology be available for individuals using voice-to-text features for hearing or visual impairments. Balancing privacy and confidentiality was a preference for all participants, highlighting the varying levels of access to data when sharing reports. Providers stressed the importance of access to credible, evidence-based resources, rather than obtaining information via "Dr. Google" or WebMD. Providers reported a need for thoughtfulness to language, context, and delivery when assessing care needs, particularly to collect what you can intervene on. Most patients and caregivers agreed with recommendations to not overburden end-users with assessments, and reminders (text messages or push notifications) should be often, however not too many.

The aim of this study was to investigate patients, convoys, and health care providers' perspectives regarding palliative care digital health to inform the design of future digital interventions. While we initially intended to generate a grounded theory framework specific to geriatric palliative care, our results aligned with human centered design approaches. These participatory approaches allow for the generation of meaningful, valued, and evidence-based design of digital health solutions. 30, 31 The documentation of participants experiences, opinions about palliative care domains, and desired features can be used to design digitally supported palliative care interventions for both older adults and their convoy. Digital health strategies are needed more than ever during COVID-19 pandemic to provide palliative care interventions, monitor patients, support convoys, and promote caregiving across the social convoy.

Participants highlight the challenge of developing digital health tools in the setting of serious illness and also the need for tools incorporating MCC. Many digital palliative care interventions address specific diseases. 32 Disease specific interventions have the advantage of targeting and tailoring information and resources. However, this specificity may not be as meaningful to older adults and convoys that are managing MCC. Developing tools for conditions that commonly co-occur, providing tool settings to personalize targeted illnesses, or syncing interventions across multiple conditions may be helpful for this population. 33 Results suggest that patients and convoys have conflicting perspectives about using and adopting specific technologies, the amount of information and tools needed, and personal health information sharing. Differences in patient and caregiver needs and expectations is welldocumented, and incongruence in health management is associated with poorer health outcomes among patients and caregivers. [34] [35] [36] [37] [38] Patients often wanted less tools and information, suggesting that too many tools would burden their convoy. In opposition, caregivers were eager for supportive tools. Introduction materials for digital interventions that include clear rationales for how each tool is useful to convoys, rather than burdensome, may be helpful for concerned patients.

Patients, convoy, and health care providers a like were excited about the opportunity to communicate about palliative care needs in a new, digitally supported way. While several digital palliative care interventions currently target symptom monitoring and assessment 32, 39 and participants recognized the importance of these domains, they were less enthusiastic about these specific tools. Rather, participants were eager to use tools regarding decision support, convoy support, goal setting, and educational resources. There is increased interest in developing digital decision aids, caregiver interventions, and mobile goal monitoring for older adults. Integrating these tools in combination with symptom monitoring and assessment features to tailor educational resources may provide a more comprehensive digital palliative care experience for patients and their convoy. Comprehensive digital solutions may allow patients and convoys to better self-manage and identify individualized palliative care needs, reserving synchronous palliative-telehealth for more complicated and intensive cases, particularly during the COVID-19 pandemic.

The COVID-19 pandemic highlights the need for digital solutions to address spirituality, anticipatory grief, and bereavement needs. 40 While our participants had some difficulty connecting spiritual needs with their HF care, due to social distancing measures, many people are staying connected with their spiritual and religious communities via discussion boards, social medical, and streaming services. Best practices for integrating these supports post-social distancing will likely benefit older adults who are unable to participate in-person in the future.

Due to the high hospitalization and fatality rates of COVID-19 particularly among older adults with MCC, 17 anticipatory grief and bereavement tools may be most needed at this time. While there are few non-synchronous bereavement options, less is available for anticipatory grief. 32 Based on these findings, we are currently developing the Convoy-Pal digital health intervention. The human-centered design model was a useful method to merge both scientific evidence and user feedback. Some key considerations we are incorporating in our design include: using a mobile platform for multiple users that includes patients and several caregivers; incorporating assessments on patients and convoy to tailor resources; increasing interoperability with technologies currently used by participants (wearables, calendars, videoconferencing); comprehensive tools that range from symptom monitoring to psycho-socialspiritual supports; and facilitating shared patient-convoy health decision making. Our next steps include iterative usability testing and a feasibility trial.

While this study documents perspectives from a large, multi-stakeholder qualitative sample, there are limitations to our work. First, our sample lacked the desired diversity in race and ethnicity but included a broad age-range among patients and convoys. Many of our sickest patients had a difficult time participating and providing detailed feedback. Therefore, our findings are likely biased towards a slightly healthier sample. Some patients were unable to identify convoy members, while for others we were able to recruit multiple convoy participants. Convoy participants were also primarily adult children. Perspectives of less-involved convoys may be missing from the described experiences and recommendations. Although we member checked our results with clinical experts, we did not review findings with patient and convoy participants.

In conclusion, digital health provides an opportunity to expand the reach of geriatric palliative care interventions. This paper documents human-centered preferences of geriatric palliative care digital health to ensure technologies are relevant and meaningful to all engaged stakeholders.

The authors have no conflicts to report. The more I know, the more it is easier for me to keep an eye on her entire health because she has many comorbidities. If I can keep track of those two heart issues and the basics -the things like the weight, the breathing issues, the oxygen levels, things like that, I can kind of -that gives me a little picture, too, of where she's at in general. So that helps me all the way around. It's difficult to live with because you never know from day to day what's going to happen with it. One day you may feel fine, the next day you may feel like somebody smacked you a good one in the chest and you just can't function. And on those days you've got to figure out cause there you really need to go in or if you don't. And if you really need to go in and do it. My biggest concern up until recently has been generally I'm here alone and so if something's going on with me I've got to take care of it. Nobody else is here to do it. -2081 Family Support I think that would be great. I mean, I don't -like in -mom's doing so well on her own, but I know there are people who were -it's a very big burden to take care of their love ones with heart failure. And it would be great to have something that checks in with the caregiver. 

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Authors would like to thank Kira Elsbernd, MPH for her assistance with interviews, provider coding, analysis, Melodie Santodomingo, MPHc for her contribution to interviews and managing demographic information, and Catia Chavez, MPH for conducting interviews.

This research is funded by a career development award and training support from the National Institute on Aging (K76AG059934, T32AG044296).

• What do you think would help you manage your health? • Do you use any technology to help you with this specific (caregiving) concern? • Would a digital tool be helpful in addressing this concern?• Reviewing this (example tool):