Adolescents living with physical disability/spina bifida: Towards a phenomenological ethnography of experience Kinavey, Christine Marie
ISBN: 0493652760
Summary:
Tremendous advances have been made in the medical treatment, and
therefore, life expectancy of individuals born with spina bifida.
This newly predicted optimism with regard to longevity poses
significant challenges to individuals living with this condition,
their families, health care providers and institutions.
A qualitative descriptive design using phenomenological ethnography
was utilized to: explore, uncover, and gain a deeper understanding of
how living with spina bifida shapes an adolescent's experience of
world, self, self-care agency, and sense of future as an adult;
illuminate the everyday demands, constraints, resources, and
possibilities of living with physical disability and; explore how
culturally constituted beliefs about physical disability impact
opportunity, ability, and overall adaptation. Multiple open-ended
interviews were conducted with 11 late developmental stage
adolescents (18 to 24 years) born with spina bifida. Naturalistic
field observations were undertaken to promote understanding of how
physically disabled adolescents' maneuver within the built
(architectural) environment.
Findings. Differences were noted with respect to how study
participants took up disability in relation to
self-understanding/identity. Study participants were noted to take-up
disability in three primary ways: Identity as overcoming disability,
identity as objectifying disability, and identify as integrating
disability. These informal explanatory models of self-understanding
were understood to be fluid, not static, mirroring identity
development in youth.
Commonalties were uncovered with regard to the bio-psycho-social
impact of living with physical disability/spina bifida. Four themes
were identified: Experiencing self as other, social negation with
stigmatized conditions, range of adaptive demands and, recognition
practices within the family. Study participants were at particular
risk in the following areas: eclipsed social horizons, misrecognition
within the culture/family, constricted understanding of self,
internalization of culture's negative stance toward self and disabled
others, alienation of bodily self, and potential downward spiral of
physical health.
Study implications include the need for comprehensive transition
programs from birth to adulthood based on a bio-ecological theory of
development that incorporate practice models of empowerment, advance
a social model of disability philosophy, identify critical triggering
events, and ascertain clients' explanatory meaning of disability.
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