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Using Grounded Theory to Inform the Human-Centered Design of Digital Health in Geriatric Palliative Care.

ABSTRACT: 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 the following: 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.

SUBMITTER: Portz JD

PROVIDER: S-EPMC7323666 | biostudies-literature | 2020 Dec

REPOSITORIES: biostudies-literature

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Using Grounded Theory to Inform the Human-Centered Design of Digital Health in Geriatric Palliative Care.

Portz Jennifer Dickman JD Ford Kelsey Lynett KL Doyon Katherine K Bekelman David B DB Boxer Rebecca S RS Kutner Jean S JS Czaja Sara S Bull Sheana S

Journal of pain and symptom management 20200629 6

<h4>Context</h4>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 ...[more]

PMID: 32615298

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Project description:BackgroundDigital mental health interventions have a great potential to alleviate mental illness and increase access to care. However, these technologies face significant challenges, especially in terms of user engagement and adoption. It has been suggested that this issue stems from a lack of user perspective in the development process; accordingly, several human-centered design approaches have been developed over the years to consider this important aspect. Yet, few human-centered design approaches to digital solutions exist in the field of mental health, and rarely are end users involved in their development.ObjectiveThe main objective of this literature review is to understand how human-centered design is considered in e-mental health intervention research.MethodsAn exploratory mapping review was conducted of mental health journals with the explicit scope of covering e-mental health technology. The human-centered design approaches reported and the core elements of design activity (ie, object, context, design process, and actors involved) were examined among the eligible studies.ResultsA total of 30 studies met the inclusion criteria, of which 22 mentioned using human-centered design approaches or specific design methods in the development of an e-mental health solution. Reported approaches were classified as participatory design (11/27, 41%), codesign (6/27, 22%), user-centered design (5/27, 19%), or a specific design method (5/27, 19%). Just over half (15/27, 56%) of the approaches mentioned were supported by references. End users were involved in each study to some extent but not necessarily in designing. About 27% (8/30) of all the included studies explicitly mentioned the presence of designers on their team.ConclusionsOur results show that some attempts have indeed been made to integrate human-centered design approaches into digital mental health technology development. However, these attempts rely very little on designers and design research. Researchers from other domains and technology developers would be wise to learn the underpinnings of human-centered design methods before selecting one over another. Inviting designers for assistance when implementing a particular approach would also be beneficial. To further motivate interest in and use of human-centered design principles in the world of e-mental health, we make nine suggestions for better reporting of human-centered design approaches in future research.

Project description:BackgroundAdverse drug reactions (ADRs) may cause serious injuries including death. Timely reporting of ADRs may play a significant role in patient safety; however, underreporting exists. Enhancing the electronic communication of ADR information to regulators and between health care providers has the potential to reduce recurrent ADRs and improve patient safety.ObjectiveThe main objectives were to explore the low rate of ADR reporting by community pharmacists (CPs) in Australia, evaluate the usability of an existing reporting system, and how this knowledge may influence the design of subsequent electronic ADR reporting systems.MethodsThe study was carried out in 2 stages. Stage 1 involved qualitative semistructured interviews to identify CPs' perceived barriers and facilitators to ADR reporting. Data were analyzed by thematic analysis, and identified themes were subsequently aligned to the task-technology fit (TTF) framework. The second stage involved a usability evaluation of a commercial web-based ADR reporting system. A structured interview protocol that combined virtual observation, think-aloud moderating techniques, retrospective questioning of the overall user experience, and a System Usability Scale (SUS). The field notes from the interviews were subjected to thematic analysis.ResultsIn total, 12 CPs were interviewed in stage 1, and 7 CPs participated in stage 2. The interview findings show that CPs are willing to report ADRs but face barriers from environmental, organizational, and IT infrastructures. Increasing ADR awareness, improving workplace practices, and implementing user-focused electronic reporting systems were seen as facilitators of ADR reporting. User testing of an existing system resulted in above average usability (SUS 68.57); however, functional and user interpretation issues were identified. Design elements such as a drop-down menu, free-text entry, checkbox, and prefilled data fields were perceived to be extremely useful for navigating the system and facilitating ADR reporting.ConclusionsExisting reporting systems are not suited to report ADRs, or adapted to workflow, and are rarely used by CPs. Our study uncovered important contextual information for the design of future ADR reporting interventions. Based on our study, a multifaceted, theory-guided, user-centered, and best practice approach to design, implementation, and evaluation may be critical for the successful adoption of ADR reporting electronic interventions and patient safety. Future studies are needed to evaluate the effectiveness of theory-driven frameworks used in the design and implementation of ADR reporting systems.

Project description:BackgroundImmigration is not a new phenomenon but, rather, has deep roots in human history. Documents from every era detail individuals who left their homelands and struggled to reestablish their lives in other countries. The aim of this study was to explore and understand the experience of Iranian immigrants who accessed Canadian health care services. Research with immigrants is useful for learning about strategies that newcomers develop to access health care services.MethodsThe research question guiding this study was, "What are the processes by which Iranian immigrants learn to access health care services in Canada?" To answer the question, a constructivist grounded theory approach was applied. Initially, unstructured interviews were conducted with 17 participants (11 women and six men) who were adults (at least 18 years old) and had immigrated to Canada within the past 15 years. Eight participants took part in a second interview, and four participants took part in a third interview.ResultsUsing a constructivist grounded theory approach, "tackling the stumbling blocks of access" emerged as the core category. The basic social process (BSP), becoming self-sufficient, was a transitional process and had five stages: becoming a stranger; feeling helpless; navigating/seeking information; employing strategies; and becoming integrated and self-sufficient. We found that "tackling the stumbling blocks of access" was the main struggle throughout this journey. Some of the immigrants were able to overcome these challenges and became proficient in accessing health care services, but others were unable to make the necessary changes and thus stayed in earlier stages/phases of transition, and sometimes returned to their country of origin.ConclusionDuring the course of this journey a substantive grounded theory was developed that revealed the challenges and issues confronted by this particular group of immigrants. This process explains why some Iranian immigrants are able to access Canadian health care effectively while others cannot. Many elements, including language proficiency, cultural differences, education, previous experiences, financial status, age, knowledge of the host country's health care services, and insider and outsider resources work synergistically in helping immigrants to access health care services effectively and appropriately.

Project description:BACKGROUND:Inappropriate gestational weight gain in pregnancy may negatively impact health outcomes for mothers and babies. While optimal gestational weight gain is often not acheived, effective counselling by antenatal health care providers is recommended. It is not known if gestational weight gain counselling practices differ by type of antenatal health care provider, namely, family physicians, midwives and obstetricians, and what barriers impede the delivery of such counselling. The objective of this study was to understand the counselling of family physicians, midwives and obstetricians in Ontario and what factors act as barriers and enablers to the provision of counselling about GWG. METHODS:Semi-structured interviews were conducted with seven family physicians, six midwives and five obstetricians in Ontario, Canada, where pregnancy care is universally covered. Convenience and purposive sampling techniques were employed. A grounded theory approach was used for data analysis. Codes, categories and themes were generated using NVIVO software. RESULTS:Providers reported that they offered gestational weight gain counselling to all patients early in pregnancy. Counselling topics included gestational weight gain targets, nutrition & exercise, gestational diabetes prevention, while dispelling misconceptions about gestational weight gain. Most do not routinely address the adverse outcomes linked to gestational weight gain, or daily caloric intake goals for pregnancy. The health care providers all faced similar barriers to counselling including patient attitudes, social and cultural issues, and accessibility of resources. Patient enthusiasm and access to a dietician motivated health care providers to provide more in-depth gestational weight gain counselling. CONCLUSION:Reported gestational weight gain counselling practices were similar between midwives, obstetricians and family physicians. Antenatal knowledge translation tools for patients and health care providers are needed, and would seem to be suitable for use across all three types of health care provider specialties.

Dataset Information

Using Grounded Theory to Inform the Human-Centered Design of Digital Health in Geriatric Palliative Care.

Publications

Using Grounded Theory to Inform the Human-Centered Design of Digital Health in Geriatric Palliative Care.

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