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Caregiving Study

The goal of our Caregiving Study is to understand how caregivers manage the demands of caring for a loved one with a long-term health condition and how social relationships affect caregivers' ability to cope.


Taking care of a loved one with a long-term health condition can be stressful. Over time, the demands of caregiving can have harmful effects on caregivers’ health and well-being. Our Caregiving Study explores the impact of caregiver stress over time and how social relationships affect their ability to cope with caregiving demands.

The Caregiving Study focuses on the following diagnoses:

  • Inborn errors of metabolism
  • Mitochondrial disorders
  • CLN3 Batten disease
  • Undiagnosed diseases
  • Other diagnoses

To learn more, please visit clinicaltrials.gov or email CaregivingStudy@mail.nih.gov.


Davidson HR, Gelles S, Keller KR, Zajdel M, Koehly LM. Becoming a Rare Disease Parent: An Interpretative Phenomenological Analysis of Parent-Caregivers' Postpartum Experiences. Qual Health Res. 2024 Jan;34(1-2):126-140. doi: 10.1177/10497323231205419. 

Koehly LM, Manalel JA. Interconnected social convoys: Understanding health and well-being through linked personal networks. Advances in Life Course Research. 2023; 56: 100541. DOI: 10.1016/j.alcr.2023.100541.

Koehly LM, Ashida S, Sumrall S, Hyman S. Caregiving interactions and behaviors in the care of children with rare genetic or undiagnosed conditions. Journal of Child and Family Studies. DOI: 10.1007/s10826-023-02645-6.

Zajdel M., Keller K., Mountcastle L., Koehly LM. (2023). Shared responsibility and network collaboration in caregiving. Social Networks. 74. 236-244. 10.1016/j.socnet.2023.05.002

Zajdel M., Swan T., Robinson T., Keller KR, Mountcastle L, & Koehly LM. Stress, coping, and physical health in caregiving. Translational Issues in Psychological Science. 2023; 9(2): 123-136. DOI: 10.1037/tps0000349.

Mountcastle L, Zajdel M, Robinson T, Keller KR, Gelles S, Livinski AA, Kikani B, Lea DE, Koehly LM. The impact of caregiving for children with chronic conditions on the HPA axis: A scoping review. Front Neuroendocrinol. 2023 Feb 10;69:101062. doi: 10.1016/j.yfrne.2023.101062. Epub ahead of print. 

Granovetter MA, Sumrall S, Lea D, Gelles S, Koehly LM. Parent-Reported Caregiving Roles of Siblings of Children with Inborn Errors of Metabolism. J Dev Behav Pediatr. 2023 Feb 23. doi: 10.1097/DBP.0000000000001168. Epub ahead of print. 

Zajdel M, Davidson H, Lea D, Koehly LM. (2022). Links of we-talk to caregiver social network systems and healthJournal of Family Psychology. Advance online publication. DOI: https://doi.org/10.1037/fam0001013

Bush L, Davidson H, Gelles S, Lea D, Koehly LM. Experiences of Families Caring for Children with Newborn Screening-Related Conditions: Implications for the Expansion of Genomics in Population-Based Neonatal Public Health Programs. Int J Neonatal Screen, 2022 May 23;8(2):35. DOI: https://doi.org/10.3390/ijns8020035.

Manalel J, Sumrall S, Davidson H, Grewal M, Granovetter M, Koehly LM. Stress, coping, and positive aspects of caregiving among caregivers of children with rare disease. Psychology & Health, 2022. 

Lea D, Shchelochkov O, Cleary J, Koehly LM. Dietary management of Propionic Acidemia: family caregiver perspectives and practicesJournal of Parenteral and Enteral Nutrition. 43(3): 434-437, 2019.


Last updated: March 6, 2024