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A literature review into Parents' experiences of raising a child with a disability, and research exploring mothers' experiences of receiving a diagnosis of Monosomy 1P36 deletion syndrome for their child

Fishwick, Vanessa Ruth (2009)
Clin.Psy.D. thesis, University of Birmingham.

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This thesis comprises a qualitative meta-synthesis of research into parents’ experiences of raising a child with a disability and a qualitative investigation into mothers’ experiences of receiving a diagnosis of Monosomy 1p36 Deletion Syndrome for their child. A meta-synthesis of six papers meeting inclusion and quality criteria is presented within this review. Overarching themes derived from the papers included two risk factors: Experiences and Challenges; and two protective factors: Strategies for Coping and Support. These are presented in a visual representation of a parent’s journey of raising a child with a disability. Using Grounded Theory techniques data were collected through semi-structured interviews with eight mothers who had received a diagnosis of Monosomy 1p36 Deletion Syndrome. An overarching theme of facing uncertainty / reducing uncertainty emerged from the data, and this was connected with five themes: gaining information, being supported / not being supported, being powerless, jumping to the future / living in the here-and-now, and diagnosis making a difference / diagnosis not making a difference. These findings highlight the need for professionals to be appropriately skilled to deliever a diagnosis whilst drawing on previous findings of research into delivering a diagnosis of Down’s Syndrome, cancer and Dementia.

Type of Work:Clin.Psy.D. thesis.
Supervisor(s):Oyebode, Jan and Oliver, Christopher
School/Faculty:Colleges (2008 onwards) > College of Life & Environmental Sciences
Department:Clinical Psychology
Subjects:BF Psychology
Institution:University of Birmingham
ID Code:383
This unpublished thesis/dissertation is copyright of the author and/or third parties. The intellectual property rights of the author or third parties in respect of this work are as defined by The Copyright Designs and Patents Act 1988 or as modified by any successor legislation. Any use made of information contained in this thesis/dissertation must be in accordance with that legislation and must be properly acknowledged. Further distribution or reproduction in any format is prohibited without the permission of the copyright holder.
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