Dissertation Defense Announcement

College of Education announces the Final Dissertation Defense of

Stephanie Gotay

for the Degree of Doctor of Education

February 20, 2019 at 12:00 PM in Ball Hall, Room 103 

Advisor: Daniel Lustig

Mothers of Adult Children Who Have Down Syndrome: Understanding the Meaning of Religion and Spirituality in Perception, Hope, and Coping

ABSTRACT: Since the 1970s, the number of individuals living with Down syndrome has continued to increase. Many of these individuals live with their families, and mothers are the primary caretakers for most of these children. As the life expectancy of individuals who have Down syndrome continues to rise, theses caregiving roles are expected to last longer. Unfortunately, the supports offered to families, and specifically mothers, have been inconsistent and often inadequate. Spirituality and religion offer some mothers additional supports and can enhance their reliance and endurance. This qualitative study employed a phenomenological approach to explore the experience of spirituality and religion in the parenting process of six mothers of adult children who have Down syndrome. The six participants resided in the Mid-South region of the United States and reported that spirituality or religion was important in their lives. Four subissue questions guided this exploration to understand how spirituality and religion influenced these mothers': (1) perception of meaning or purpose in their child's diagnosis; (2) positive or negative perceptions of Down syndrome within the context of the church; (3) coping resources and strategies; and (4) perceptions of hope for the child's future. The data collected from a series of three face-to-face interviews with the six participants was processed using Colaizzi's method of data analysis. The findings indicated spirituality and religion were supportive coping resources for the mothers in this study, but they were also sources of stress, particularly religion. Mothers found comfort in the belief that their child had purpose, and several mothers believed they were divinely chosen to be the mother of their child. Although biblical scriptures and stories offered reassurances, the supports received from parishioners and religious leaders were inconsistent and sometimes rejecting. Mothers frequently described the institution of the church as insensitive to the needs of individuals who had Down syndrome. When considering the future, mothers' reliance on spiritual and religious faith wavered, and proactive planning increased. The most frequently reported source of spiritual support among these mothers was their relationship with God.