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

摘要

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.