Illness Experiences of Adults with Spina Bifida: Protecting the Whole Self

To understand and describe the illness experiences of adults with spina bifida (SB) which is an incurable birth defect and chronic condition that must be managed throughout life.

A qualitative study using grounded theory was adopted. Data were collected through individual interviews with 16 adults with SB between 2016 and 2017 in South Korea. All interviews were audiotaped, and the transcribed data were analyzed using constant comparative analysis.

The basic socio-psychological process that underlies the illness experiences of adults with SB was identified as protecting the whole self. This consists of three stages: strict self-concealment, attempting self-disclosure, and balancing between self-concealment and self-disclosure. These stages reveal a process of establishing a firm sense of self by freeing oneself from the shame and stigma of society. Three different patterns of living emerged as a result: living as a non-disabled person, living as a marginal person between non-disabled and disabled, and living as a disabled person.

Adults with SB struggle to protect their whole self while managing their chronic conditions by having to constantly balance between self-concealment and self-disclosure. Intervention for adults with SB needs to be based on the stage of sociopsychological maturation. In the early stage, intervention needs to be focused on self-concealment to help establish a firm sense of self. On the other hand, in the later stage when psychological maturity occurs, an intervention that focuses on self-disclosure would be helpful so as not to be isolated from society.