Shame, Suffering, and Believing in the Family: The Experiences of Grandmothers of a Grandchild With a Developmental Delay or Disability in the Context of Chinese Culture

Abstract

Grandparents are primary resources of caregiving support for parents worldwide, regardless of the cultural background. In Chinese societies, grandmothers often fill the role of supportive caregiver. However, a knowledge gap in the literature exists about how Chinese culture influences caregiving for grandmothers of grandchildren with a disability, particularly in Taiwan. This phenomenological study explored the lived experience of grandmothers caring for a grandchild with a developmental delay or disability in the context of Chinese culture. Twenty-five grandmothers were interviewed. When grandmothers learned of their grandchild’s disability, they experienced suffering, which was compounded by the stigma attached to persons with a disability in Chinese cultures, and they also experienced shame and fear of social rejection. Grandmothers’ belief in the importance of family gave meaning to their suffering and prompted them to find new ways to deal with everyday difficulties. These findings can guide nurses and health care professionals responsible for supporting grandmothers caring for a child with a disability in the context of Chinese culture.