Mitchell Centre Seminar Series
| Dates: | 28 October 2026 |
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| Times: | 16:00 - 17:30 |
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| What is it: | Seminar |
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| Organiser: | School of Social Sciences |
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Laura Koehly
National Human Genome Research Institute
Communal Coping and Social Networks in Families Affected by Rare Genetic Conditions.
Families caring for children with rare genetic conditions experience substantial and chronic stress as they navigate complex medical demands, uncertainty, and limited social and healthcare support. This talk examines communal coping as a framework for understanding how families collectively appraise caregiving challenges and coordinate supportive responses.
Drawing on cross-sectional data from caregivers enrolled in NIH rare disease natural history studies, we explore the relationships among social network functioning, family communication, and caregiver well-being in families affected by inherited metabolic disorders, undiagnosed conditions, and Batten disease. Using linguistic analyses of caregivers’ open-ended interview transcripts, including indicators of shared identity and appraisal such as “we-talk,” we examine associations among communal coping, family communication, care-network engagement, and caregiver outcomes.
We also present future directions from an ongoing natural history study of caregiving designed to characterize how family and caregiving processes evolve over time. Collectively, these findings highlight the interpersonal and networked nature of caregiving in rare disease contexts and identify family-level processes that may promote resilience, reduce caregiver burden, and inform the development of interventions to support families across the caregiving trajectory.
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Humanities Bridgeford Street
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