Design considerations for family-centered health management

Shin, Ji Youn; Kedroske, Jacob; Vue, Rebecca; Sankaran, Roshun; Chaar, Dima; Churay, Tracey; Choi, Sung Won

doi:10.1145/3202185.3210781

Cited by 17 publications

(10 citation statements)

References 10 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…This study identified a significant cognitive and time burden for family caregivers of CSHCN to share complete information accurately and concisely regarding their child’s health with other caregivers [ 40 - 42 ]. Information sharing occurs within caregiver handoffs in the home, at caregiver team meetings in clinics and schools, and with their child’s physicians and specialists [ 39 ].…”

Section: Discussionmentioning

confidence: 99%

“…With the cognitive burden that family caregivers face in accurately sharing information with others, digital tools should support caregivers to access information efficiently and effectively depending on with whom they are interacting and their current working environment. For example, in the clinical setting, design recommendations for digital health technology development to support health care management of pediatric blood marrow transplant patients have been described by Shin et al [ 42 ]. Although not explicitly describing how the user would interact with the technology to access insights about the health data, their results similarly point toward the idea of a digital health tool that provides general use in tracking patient symptoms, consult visits, and medications, supporting the caregiver’s cognitive load to remember details accurately [ 42 ].…”

Section: Discussionmentioning

confidence: 99%

“…For example, in the clinical setting, design recommendations for digital health technology development to support health care management of pediatric blood marrow transplant patients have been described by Shin et al [ 42 ]. Although not explicitly describing how the user would interact with the technology to access insights about the health data, their results similarly point toward the idea of a digital health tool that provides general use in tracking patient symptoms, consult visits, and medications, supporting the caregiver’s cognitive load to remember details accurately [ 42 ]. Shin et al [ 42 ] further recommend providing overviews of the visit to the caregivers in a manner that promotes an accessible understanding of the information to support an engaging clinic visit.…”

Section: Discussionmentioning

confidence: 99%

“…Although not explicitly describing how the user would interact with the technology to access insights about the health data, their results similarly point toward the idea of a digital health tool that provides general use in tracking patient symptoms, consult visits, and medications, supporting the caregiver’s cognitive load to remember details accurately [ 42 ]. Shin et al [ 42 ] further recommend providing overviews of the visit to the caregivers in a manner that promotes an accessible understanding of the information to support an engaging clinic visit. Previous recommendations have also been made to design digital health technologies that facilitate document sharing among providers, family caregivers, and educators [ 45 ] and automatically send new information to the care team individuals requiring it [ 39 ].…”

Section: Discussionmentioning

confidence: 99%

See 3 more Smart Citations

Exploring the Experiences of Family Caregivers of Children With Special Health Care Needs to Inform the Design of Digital Health Systems: Formative Qualitative Study

Tennant¹,

Allana²,

Mercer³

et al. 2022

JMIR Form Res

View full text Add to dashboard Cite

Background Family caregivers of children with special health care needs (CSHCN) are responsible for managing and communicating information regarding their child’s health in their homes. Although family caregivers currently capture information through nondigital methods, digital health care applications are a promising solution for supporting the standardization of information management in complex home care across their child’s health care team. However, family caregivers continue to use paper-based methods where the adoption of digital health care tools is low. With the rise in home care for children with complex health care needs, it is important to understand the caregiving work domain to inform the design of technologies that support child safety in the home. Objective The aim of this study is to explore how family caregivers navigate information management and communication in complex home care for CSHCN. Methods This research is part of a broader study to explore caregivers’ perspectives on integrating and designing digital health care tools for complex home care. The broader study included interviews and surveys about designing a voice user interface to support home care. This formative study explored semistructured interview data with family caregivers of CSHCN about their home care situations. Inductive thematic analysis was used to analyze the information management and communication processes. Results We collected data from 7 family caregivers in North America and identified 5 themes. First, family caregivers were continuously learning to provide care. They were also updating the caregiver team on their child’s status and teaching caregivers about their care situation. As caregiving teams grew, they found themselves working on communicating with their children’s educators. Beyond the scope of managing their child’s health information, family caregivers also navigated bureaucratic processes for their child’s home care. Conclusions Family caregivers’ experiences of caring for CSHCN differ contextually and evolve as their child’s condition changes and they grow toward adulthood. Family caregivers recorded information using paper-based tools, which did not sufficiently support information management. They also experienced significant pressure in summarizing information and coordinating 2-way communication about the details of their child’s health with caregivers. The design of digital health care systems and tools for complex home care may improve care coordination if they provide an intuitive method for information interaction and significant utility by delivering situation-specific insights and adapting to unique and dynamic home care environments. Although these findings provide a foundational understanding, there is an opportunity for further research to generalize the findings.

show abstract

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

See 2 more Smart Citations

Exploring the Experiences of Family Caregivers of Children With Special Health Care Needs to Inform the Design of Digital Health Systems: Formative Qualitative Study

Tennant¹,

Allana²,

Mercer³

et al. 2022

JMIR Form Res

View full text Add to dashboard Cite

show abstract

“…Recent studies in HCI and healthcare domain highlight the scope and the benefits of available technology-mediated interventions designed for children and their families specifically in health [13]. These interventions range from family-centered health management [11] to health information delivery [7]. Studies have revealed that shared responsibility and support among family members have positive impacts on illness management [10].…”

Section: Background and Related Studymentioning

confidence: 99%

Towards Better Transitions for Children with Diabetes

Shin

Holtz

2019

Proceedings of the 18th ACM International Conference on Interaction Design and Children

Self Cite

View full text Add to dashboard Cite

Children with Type 1 Diabetes (T1D) are required to manage their illness to alleviate further long-term complications. Although children are expected to engage in appropriate self-management activities once they become older, many of the children remain passive actors in managing their condition. Due to the lack of knowledge and skills, as well as changes in parent-child relationships, children demonstrate low self-care adherence. Consequently, parents also face difficulties in defining their role in long-term care. This study, part of a larger study, comprised of three phases: mobile app development, prototype feasibility testing, and usability testing with child-parent dyads users. As part of the third phase, this study used qualitative interviews with 24 child-parent dyads to understand the existing facilitators and barriers in using the app. Our findings suggest that users found that the app reminded them to track their blood glucose (BG) values and facilitated child-parent communication in a user-friendly manner. By capturing the emerging themes in adopting the app from the children's perspective, we will iteratively refine the app to better suit the users' requirements.

show abstract

Enhancing Resilience in Family Caregivers Using an mHealth App

et al. 2022

Self Cite

View full text Add to dashboard Cite

Background: We previously developed a mobile health (mHealth) app (Roadmap) to promote the resilience of family caregivers during the acute phases of care in patients undergoing hematopoietic cell transplantation (HCT). Objective: This study explored users’ perspectives on the uptake of Roadmap’s multi-component features and the app’s utility in promoting resilience. Methods: Fifteen participants were randomized to the full version of the app that included resilience-building activities and the other 15 were randomized to the control version that included a limited view of the app (i.e., without any resilience-building activities). They were instructed to use the app for 120 days. Semi-structured qualitative interviews were then conducted with users as part of an ongoing, larger Roadmap study (NCT04094844). During the interview, caregiver participants were asked about their overall experiences with the app, frequency of use, features used, facilitators and barriers of use, and their perspectives on its utility in promoting resilience. Data were professionally transcribed, coded, and categorized through content analysis. Results: Interviews were conducted with thirty participants, which included 23 females and 7 males. The median age of the population was 58 years (range, 23–82). The four main themes that emerged included app use, ease-of-use, user experiences, and ability to foster resilience. The sub-themes identified related to facilitators (convenience and not harmful); barriers (caregiver burden and being too overwhelmed during the acute phases of HCT care); resilience (optimism/positivity and self-care); and app design improvements (personalization and notifications/reminders). Conclusions: The qualitative evaluation provided insights into which components were utilized and how one, or a combination of the multi-component features, may be enhancing users’ experiences. Lessons learned suggest that the Roadmap app contributed to promoting resilience during the acute phases of HCT care. Nonetheless, features that provided enhanced personalization may further improve longer-term engagement.

show abstract

Design considerations for family-centered health management

Cited by 17 publications

References 10 publications

Exploring the Experiences of Family Caregivers of Children With Special Health Care Needs to Inform the Design of Digital Health Systems: Formative Qualitative Study

Exploring the Experiences of Family Caregivers of Children With Special Health Care Needs to Inform the Design of Digital Health Systems: Formative Qualitative Study

Towards Better Transitions for Children with Diabetes

Enhancing Resilience in Family Caregivers Using an mHealth App

Contact Info

Product

Resources

About