Purpose: 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. Methods: 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. Results: 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. Conclusion 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.

Purpose: 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. Methods: 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. Results: 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. Conclusion 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.

PURPOSE: The purpose of the study was to identify and describe the caregiving difficulties that mothers of children with spina bifida experience from their own perspectives. METHODS: A qualitative descriptive study was designed. Data were collected from five mini-focus group interviews and four individual interviews using open-ended questions. Nineteen mothers of children with mild spina bifida participated in the study during 2014-2015. Data were analyzed using qualitative content analysis to identify major difficulties perceived by the mothers. RESULTS: Five domains were identified with 12 subdomains. "Daily routine continence management" describes difficulties arising in bladder and bowel management for the child with spina bifida. "Management of school life of child" deals with difficulties in relation to the school facilities, such as the toilets, as well as teachers and friends. "Relationship with family and neighbors" illustrates problems in relations with their spouse, normal children, relatives and neighbors. "Maintaining physical and psychological health" includes physical and psychological problems of the mothers. "Finance" describes economic burden that the mothers face in the management of child's illness. CONCLUSION: The findings from this study provide insight into the practical issues related to the management of chronic conditions of children with spina bifida from the mothers??perspectives.
Child* ; Friends ; Humans ; Interviews as Topic ; Mothers ; Qualitative Research ; Spinal Dysraphism* ; Spouses ; Urinary Bladder