'We didn't tell everybody because everybody didn't need to know': An examination of parental disability-disclosure of spina bifida

Title

'We didn't tell everybody because everybody didn't need to know': An examination of parental disability-disclosure of spina bifida

Creator

Copeland K; Lasater BAL

Publisher

Disability & Society

Date

2018

Subject

qualitative study; No terms assigned; communication privacy management; disability-disclosure; self-disclosure; spina bifida

Description

This qualitative study sheds light on the process that parents go through as they learn of a spina bifida diagnosis and the communication strategies that are used to discuss an expected disability diagnosis with others. Interviews with 30 participants discovered that there were immediate disclosures made with family and close friends. Additionally, circumstantial disclosures took place when returning to routine behaviors. Participants described five distinctive criteria that developed a privacy boundary: self-blame, grief, helping others cope, maintaining privacy of child, and stigma. Implications for parents, medical professionals, and communication scholars are discussed.

Citation List Month

December 2018 List

Collection

Citation

Copeland K; Lasater BAL, “'We didn't tell everybody because everybody didn't need to know': An examination of parental disability-disclosure of spina bifida,” Pediatric Palliative Care Library, accessed October 3, 2022, https://pedpalascnetlibrary.omeka.net/items/show/15820.

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