"I feel like I need to split myself in half": Using Role Theory to Design for Parents as Caregiving Teams in the Children's Hospital
Abstract
When their child is hospitalized, parents take on new caregiving roles, in addition to their existing home and work-related responsibilities. Previous CSCW research has shown how technologies can support caregiving, but more research is needed to systematically understand how technology could support parents and other family caregivers as they adopt new coordination roles in their collaborations with each other. This paper reports findings from an interview study with parents of children hospitalized for cancer treatment. We used the Role Theory framework from the social sciences to show how parents adopt and enact caregiving roles during hospitalization and the challenges they experience as they adapt to this stressful situation. We show how parents experience 'role strain' as they attempt to divide caregiving work and introduce the concept of 'inter-caregiver information disparity.' We propose design opportunities for caregiving coordination technologies to better support caregiving roles in multi-caregiver teams.
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Caregivers and patient navigators can play pivotal roles in access, treatment timeliness, and continuity of cancer care, while clinician engagement at each iterative stage of UCD/HCD is critical for integration into workflows and sustained adoption.
“Caregivers and patient navigators can play pivotal roles in access, treatment timeliness, and continuity of cancer care, while clinician engagement at each iterative stage of UCD/HCD is critical for integration into workflows and sustained adoption [2,30].”
From User-Centered Design for Digital Patient-Navigation Tools in Oncology: Scoping Review (2026) · cites this paper as [30]
Cites
Using thematic analysis in psychology
Braun, V., & Clarke, V. (2006) · Qualitative Research in Psychology · doi:10.1191/1478088706qp063oa · Cited by 194,414 · see citing works
The coordination of work activities: Cooperation and conflict in a hospital context
Symon, G., Long, K., & Ellis, J. (1996) · Computer Supported Cooperative Work (CSCW) · doi:10.1007/bf00141934 · Cited by 148 · see citing works
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User-Centered Design for Digital Patient-Navigation Tools in Oncology: Scoping Review
Kheirinejad, S., White, B. M., Kheirkhah Rahimabad, P., Zink, J. A., Hashtarkhani, S., Kumsa, F. A., Rashid, R., Chinthala, L., Brett, C. L., Davis, R. L., et al. (2026) · JMIR Human Factors · doi:10.2196/87686
“For example, Nikkhah et al [30] applied role theory to understand how parents act as caregiving teams in children’s hospitals, emphasizing the need for design features that support coordination and shared responsibilities.”
- Authors
- Nikkhah, S., Rode, A. U., Mittal, P., Kulkarni, N. K., Nadkarni, S., Mueller, E. L., & Miller, A. D.
- Affiliations
- Indiana University Indianapolis (US)
- Indiana University – Purdue University Indianapolis (US)
- Indiana University School of Medicine (US)
- ORCID
- Venue
- Companion Publication of the 2022 Conference on Computer Supported Cooperative Work and Social Computing
- Publisher
- ACM
- Published
- 2022-11-08
- Pages
- 115-120
- OpenAlex
- W4308426649
- Cited by
- 16
- References
- 2
- Citations by year
- 2026: 4 · 2025: 4 · 2024: 6 · 2023: 2
- FWCI
- 2.40
- Type
- conference paper
- Language
- en
- Open access
- closed
- Locations
- ACM Conference on Computer Supported Cooperative Work (CSCW) (publishedVersion)
- Funders
- National Science Foundation (IIS- 1850273)
- NSF (National Science Foundation) (IIS-2047432)
- Topics
- Physical Sciences › Computer Science › Human-Computer Interaction › Innovative Human-Technology Interaction
- Health Sciences › Health Professions › General Health Professions › Mobile Health and mHealth Applications
- Social Sciences › Sociology and Political Science › Family Support in Illness
- Keywords
- parental care, children's hospitals, childhood cancer, role theory, role strain, family caregivers, pediatric hospitalization
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