“Slowly but Steadily, You’re Running Out of Steam”: Aging Parents’ Caregiving Experiences Through Photovoice

Aging parents caring for adult children with disabilities or other care needs face significant
challenges and health-related issues over extended periods. The aim of this study was to
explore the experiences of aging parents with caregiving responsibilities. This qualitative
participatory study followed the research process of a photovoice study. Thirteen parents,
aged 51 to 76 years, of adult children with care needs, aged 20 to 49 years, participated
in this study. The parents captured photographs depicting their daily lives which were
contextualized and coded during group discussions. The data were analyzed using thematic
analysis and reviewed collaboratively with the participants. Six key themes emerged in
the data analysis. 1. mastering complexity, 2. being an expert and advocate, 3. balancing
autonomy and care, 4. care as a lifelong journey, 5. standing on the margins of society, and
6. worrying about the future. This study underscores the urgent need for comprehensive
and coordinated support systems that ensure the well-being of aging caregivers while
addressing the evolving needs of their adult children.