Examining the economic impacts of caregiving among families of children of medical complexity: A qualitative study to inform inclusive economic models.

BACKGROUND: Children with medical complexity (CMC) represent a heterogeneous group of children with multiple, chronic healthcare conditions. Caregivers of CMC experience a high intensity of caregiving that is often variable, extends across several networks of care, and often lasts for the entirety of the child's life. The economic impacts of caregiving are yet understudied in the CMC context. There have been recognized limitations to the sole use of quantitative methods when developing economic models of disease because they lack direct caregiver voice and context of caregiving activities and existing methods have been noted to be ableist. OBJECTIVE: The purpose of this study was to explore the economic spillover impacts of caregiving among families of CMC using their own words and perspectives with the intent of expanding caregiver-centered perspectives when developing economic models. METHODS: This study was a secondary analysis of a qualitative study that was conducted to examine family management practices among caregivers of CMC and their social networks. Caregivers of CMC were recruited through a Pediatric Complex Care clinic at an academic medical center in the mid-Atlantic region, USA. This study used inductive qualitative descriptive methods and the use of a template to define features of the person impacted and to define the economic construct as either a direct or indirect/spillover cost. RESULTS: Twenty caregivers were included in this study. Perspectives from the caregivers of CMC revealed several key themes: (1) time investment in caregiving - impacting the primary caregivers; (2) physical and mental health impacts - impacting the child themselves, siblings, and the primary caregivers; (3) impacts to leisure activities and self-care - impacting the child themselves, siblings, and the primary caregivers; (4) impacts to the social network/social capital. CONCLUSIONS: The themes described can be operationalized into inclusive family-centered models that represent the impacts of caregiving in the context of the family units of CMC. The use of qualitative methods to expand our development of quantitative economic models can be adapted to other populations where caregivers are involved in care. Caregivers can and should have an active voice in preference-based assessments that are operationalized in economic contexts to make them more inclusive. CLINICALTRIAL: n/a. INTERNATIONAL REGISTERED REPORT: RR2-10.2196/14810.

Designing for caregiving networks: a case study of primary caregivers of children with medical complexity.

OBJECTIVE: The study aimed to characterize the experiences of primary caregivers of children with medical complexity (CMC) in engaging with other members of the child's caregiving network, thereby informing the design of health information technology (IT) for the caregiving network. Caregiving networks include friends, family, community members, and other trusted individuals who provide resources, information, health, or childcare. MATERIALS AND METHODS: We performed a secondary analysis of two qualitative studies. Primary studies conducted semi-structured interviews (n = 50) with family caregivers of CMC. Interviews were held in the Midwest (n = 30) and the mid-Atlantic region (n = 20). Interviews were transcribed verbatim for thematic analysis. Emergent themes were mapped to implications for the design of future health IT. RESULTS: Thematic analysis identified 8 themes characterizing a wide range of primary caregivers' experiences in constructing, managing, and ensuring high-quality care delivery across the caregiving network. DISCUSSION: Findings evidence a critical need to create flexible and customizable tools designed to support hiring/training processes, coordinating daily care across the caregiving network, communicating changing needs and care updates across the caregiving network, and creating contingency plans for instances where caregivers are unavailable to provide care to the CMC. Informaticists should additionally design accessible platforms that allow primary caregivers to connect with and learn from other caregivers while minimizing exposure to sensitive or emotional content as indicated by the user. CONCLUSION: This article contributes to the design of health IT for CMC caregiving networks by uncovering previously underrecognized needs and experiences of CMC primary caregivers and drawing direct connections to design implications.

Establishing the Need for Anticipatory Symptom Guidance and Networked Models of Disease in Adaptive Family Management Among Children With Medical Complexity: Qualitative Study.

BACKGROUND: Caregivers of children with medical complexity navigate complex family management tasks for their child both in the hospital and home-based setting. The roles and relationships of members of their social network and the dynamic evolution of these family management tasks have been underexamined. OBJECTIVE: The purpose of this study was to explore the structures and processes of family management among caregivers of children with medical complexity, with a focus on the underlying dynamic nature of family management practices and the role of members of their social network. METHODS: This study used a qualitative approach to interview caregivers of children with medical complexity and members of their social network. Caregivers of children with medical complexity were recruited through an academic Children's Hospital Complex Care Clinic in the mid-Atlantic region and interviewed over a period of 1 to 3 days. Responses were analyzed using constructivist grounded theory and situational analysis to construct a new conceptual model. Only caregiver responses are reported here. RESULTS: In total, 20 caregivers were included in this analysis. Caregiver perspectives revealed the contextual processes that allowed for practices of family management within the setting of rapidly evolving symptoms and health concerns. The dynamic and adaptive nature of this process is a key underlying action supporting this novel conceptual model. The central themes underpinning the adaptive family management model include symptom cues, ongoing surveillance, information gathering, and acute on chronic health concerns. The model also highlights facilitators and threats to successful family management among children with medical complexity and the networked relationship among the structures and processes. CONCLUSIONS: The adaptive family management model provides a basis for further quantitative operationalization and study. Previously described self- or family management frameworks do not account for the underlying dynamic nature of the disease trajectory and the developmental stage progression of the child or adolescent, and our work extends existing work. For future work, there is a defined role for technology-enhanced personalized approaches to home-based monitoring. Due to the disparities caregivers and the children in this population already experience, technology-enhanced approaches must be built alongside key stakeholders with an equity orientation to technology co-development. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/14810.

Correction: A Web-Based Platform (CareVirtue) to Support Caregivers of People Living With Alzheimer Disease and Related Dementias: Mixed Methods Feasibility Study.

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A Web-Based Platform (CareVirtue) to Support Caregivers of People Living With Alzheimer Disease and Related Dementias: Mixed Methods Feasibility Study.

BACKGROUND: People living with Alzheimer disease and related dementias (ADRD) require prolonged and complex care that is primarily managed by informal caregivers who face significant unmet needs regarding support for communicating and coordinating across their informal care network. To address this unmet need, we developed CareVirtue, which provides (1) the ability to invite care network members; (2) a care guide detailing the care plan; (3) a journal where care network members can document, communicate, and coordinate; (4) a shared calendar; and (5) vetted geolocated caregiver resources. OBJECTIVE: This study aims to evaluate CareVirtue's feasibility based on: (1) Who used CareVirtue? (2) How did caregivers use CareVirtue? (3) How did caregivers perceive the acceptability of CareVirtue? (4) What factors were associated with CareVirtue use? METHODS: We conducted a feasibility study with 51 care networks over a period of 8 weeks and used a mixed methods approach that included both quantitative CareVirtue usage data and semistructured interviews. RESULTS: Care networks ranged from 1 to 8 members. Primary caregivers were predominantly female (38/51, 75%), White (44/51, 86%), married (37/51, 73%), college educated (36/51, 71%), and were, on average, 60.3 (SD 9.8) years of age, with 18% (9/51) living in a rural area. CareVirtue usage varied along 2 axes (total usage and type of usage), with heterogeneity in how the most engaged care networks interacted with CareVirtue. Interviews identified a range of ways CareVirtue was useful, including practically, organizationally, and emotionally. On the Behavioral Intention Scale, 72% (26/36) of primary caregivers reported an average score of at least 3, indicating an above average intention to use. The average was 81.8 (SD 12.8) for the System Usability Scale score, indicating "good" usability, and 3.4 (SD 1.0) for perceived usefulness, suggesting above average usefulness. The average confidence score increased significantly over the study duration from 7.8 in week 2 to 8.9 in week 7 (P=.005; r=0.91, 95% CI 0.84-0.95). The following sociodemographic characteristics were associated with posting in the journal: retired (mean 59.5 posts for retired caregivers and mean 16.9 for nonretired caregivers), income (mean 13 posts for those reporting >US $100K and mean 55.4 for those reporting