scholarly journals Exploring the Experiences of Family Caregivers of Children with Special Health Care Needs to Inform the Design of Digital Health Systems: A Formative Qualitative Study (Preprint)

10.2196/28895 ◽  
2021 ◽  
Author(s):  
Ryan Tennant ◽  
Sana Allana ◽  
Kate Mercer ◽  
Catherine M Burns
Keyword(s):  
Health Care ◽  
Qualitative Study ◽  
Family Caregivers ◽  
Health Systems ◽  
Digital Health ◽  
Special Health Care Needs ◽  
Health Care Needs ◽  
Care Needs ◽  
Special Health Care ◽  
Special Health

Towards Designing In-Home Digital Health Tools for Family Caregivers of Children with Special Health Care Needs: An Exploratory Qualitative Study (Preprint)

2021 ◽  
Author(s):  
Ryan Tennant ◽  
Sana Allana ◽  
Kate Mercer ◽  
Catherine M Burns
Keyword(s):  
Health Care ◽  
Home Care ◽  
Family Caregivers ◽  
Information Management ◽  
Special Health Care Needs ◽  
Health Care Needs ◽  
Care Needs ◽  
Special Health Care ◽  
Digital Healthcare ◽  
Special Health

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 home. While family caregivers currently capture information through non-digital methods, digital healthcare applications are a promising solution to support standardizing 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 healthcare tools is low. With the rise in home care for children with complex health care needs, it is critically important to understand the caregiving work domain to inform the design of technologies that support child safety in the home. OBJECTIVE The objective of our study was to understand how family caregivers navigate information management and communication in complex home care for children with special health care needs. METHODS This research is part of a broader study about the perspectives of caregivers across North America on integrating and designing digital healthcare tools for complex home care. We conducted semi-structured interviews with family caregivers of children with special health care needs. Inductive thematic analysis was used to analyze the information management and communication processes. RESULTS We collected data from five Canadian and two American family caregivers and identified five themes. First, family caregivers were Continuously Learning to Provide Care. They were 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 Child’s Educators. Beyond the scope of managing their child’s health information, family caregivers were additionally Navigating Bureaucratic Processes for their child’s home care. CONCLUSIONS Family caregivers’ experiences caring for CSHCN differ geographically and evolve as their child’s condition changes and they grow towards adulthood. Family caregivers recorded information using paper-based tools, which did not sufficiently support information management. They also experienced significant pressures in summarizing information and coordinating two-way communication about the details of their child’s health with caregivers. The design of digital healthcare tools for complex home care may improve care coordination if they provide an intuitive method for information-interaction yet provide significant utility by delivering situation-specific insights and adapting to unique and dynamic homecare environments.

scholarly journals Use of Synchronous Digital Health Technologies for the Care of Children With Special Health Care Needs and Their Families: Scoping Review (Preprint)

2019 ◽  
Author(s):  
Marissa Bird ◽  
Lin Li ◽  
Carley Ouellette ◽  
Kylie Hopkins ◽  
Michael H McGillion ◽  
...  
Keyword(s):  
Health Care ◽  
Scoping Review ◽  
Digital Health ◽  
Special Health Care Needs ◽  
Health Programs ◽  
Health Care Needs ◽  
Care Needs ◽  
Special Health Care ◽  
Health Technologies ◽  
Special Health

BACKGROUND Use of synchronous digital health technologies for care delivery to children with special health care needs (having a chronic physical, behavioral, developmental, or emotional condition in combination with high resource use) and their families at home has shown promise for improving outcomes and increasing access to care for this medically fragile and resource-intensive population. However, a comprehensive description of the various models of synchronous home digital health interventions does not exist, nor has the impact of such interventions been summarized to date. OBJECTIVE We aim to describe the various models of synchronous home digital health that have been used in pediatric populations with special health care needs, their outcomes, and implementation barriers. METHODS A systematic scoping review of the literature was conducted, guided by the Arksey and O’Malley Scoping Review Framework. MEDLINE, CINAHL, and EMBASE databases were searched from inception to June 2018, and the reference lists of the included systematic reviews and high-impact journals were hand-searched. RESULTS A total of 38 articles were included in this review. Interventional articles are described as feasibility studies, studies that aim to provide direct care to children with special health care needs, and studies that aim to support family members to deliver care to children with special health care needs. End-user involvement in the design and implementation of studies is evaluated using a human-centered design framework, and factors affecting the implementation of digital health programs are discussed in relation to technological, human, and systems factors. CONCLUSIONS The use of digital health to care for children with special health care needs presents an opportunity to leverage the capacity of technology to connect patients and their families to much-needed care from expert health care providers while avoiding the expenses and potential harms of the hospital-based care system. Strategies to scale and spread pilot studies, such as involving end users in the co-design techniques, are needed to optimize digital health programs for children with special health care needs.

scholarly journals Use of Synchronous Digital Health Technologies for the Care of Children With Special Health Care Needs and Their Families: Scoping Review

10.2196/15106 ◽  
2019 ◽  
Vol 2 (2) ◽  
pp. e15106 ◽  
Author(s):  
Marissa Bird ◽  
Lin Li ◽  
Carley Ouellette ◽  
Kylie Hopkins ◽  
Michael H McGillion ◽  
...  
Keyword(s):  
Health Care ◽  
Scoping Review ◽  
Digital Health ◽  
Special Health Care Needs ◽  
Health Programs ◽  
Health Care Needs ◽  
Care Needs ◽  
Special Health Care ◽  
Health Technologies ◽  
Special Health

Background Use of synchronous digital health technologies for care delivery to children with special health care needs (having a chronic physical, behavioral, developmental, or emotional condition in combination with high resource use) and their families at home has shown promise for improving outcomes and increasing access to care for this medically fragile and resource-intensive population. However, a comprehensive description of the various models of synchronous home digital health interventions does not exist, nor has the impact of such interventions been summarized to date. Objective We aim to describe the various models of synchronous home digital health that have been used in pediatric populations with special health care needs, their outcomes, and implementation barriers. Methods A systematic scoping review of the literature was conducted, guided by the Arksey and O’Malley Scoping Review Framework. MEDLINE, CINAHL, and EMBASE databases were searched from inception to June 2018, and the reference lists of the included systematic reviews and high-impact journals were hand-searched. Results A total of 38 articles were included in this review. Interventional articles are described as feasibility studies, studies that aim to provide direct care to children with special health care needs, and studies that aim to support family members to deliver care to children with special health care needs. End-user involvement in the design and implementation of studies is evaluated using a human-centered design framework, and factors affecting the implementation of digital health programs are discussed in relation to technological, human, and systems factors. Conclusions The use of digital health to care for children with special health care needs presents an opportunity to leverage the capacity of technology to connect patients and their families to much-needed care from expert health care providers while avoiding the expenses and potential harms of the hospital-based care system. Strategies to scale and spread pilot studies, such as involving end users in the co-design techniques, are needed to optimize digital health programs for children with special health care needs.

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