Search results for ‘Subject term:"spina bifida"’ Sort:
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Risk and protective influences in the lives of siblings of youths with spina bifida
- Authors:
- BELLIN Melissa H., KOVACS Pamela J., SAWIN Kathleen J.
- Journal article citation:
- Health and Social Work, 33(3), August 2008, pp.199-209.
- Publisher:
- Oxford University Press
The impact of childhood chronic health conditions like spina bifida (SB) is a shared family experience. However, the lived experience of siblings is not well known. One hundred and fifty-five brothers and sisters of a child with SB responded to an open-ended question included in an anonymous self-administered mail questionnaire designed to enhance awareness of how adolescent siblings experience this chronic condition. Content analysis performed by interdisciplinary authors identified four domains - Rewards and Consequences of Spina Bifida, Journey Toward Acceptance of Spina Bifida, Emotional Climate of Siblings, and Qualities of the Social Environment - that depict emotional complexity in response to the diverse risk and protective influences present in the lives of siblings. By bolstering the siblings' strengths and resources found in their adaptive coping mechanisms, spirituality, cohesive family ties, and supportive peer friendships, social workers and other health care professionals may help them to successfully navigate the intense and confusing emotions that may naturally spring from the challenges and opportunities associated with SB.
Selling your soul to the devil: an autoethnography of pain, pleasure and the quest for a child
- Author:
- NEVILLE-JAN Ann
- Journal article citation:
- Disability and Society, 19(2), March 2004, pp.113-127.
- Publisher:
- Taylor and Francis
In this article the author presents an autoethnography in the form of a quest narrative linked as a self-reflexive text to her continuing research of children and adults with spina bifida. The story centers on the themes of chronic illness, pain and sexuality, highlighting gaps in the literature related to these topics. She narrates her story as a manifesto for women with physical impairments to break their silence and talk about their sexuality. She recommends autoethnography as a method of understanding disability as embodied.
Understanding disability: causes, characteristics and coping
- Author:
- STOPFORD Victoria
- Publisher:
- Edward Arnold
- Publication year:
- 1987
- Pagination:
- 171p., illus., bibliogs.
- Place of publication:
- London