{"id":{"repo_id":"birmingham","oai_identifier":"oai:etheses.bham.ac.uk:383"},"canonical_url":"https://search.dev.ndltd.org/etd/birmingham/oai:etheses.bham.ac.uk:383","repository":{"repo_id":"birmingham","name":"University of Birmingham","base_url":"https://etheses.bham.ac.uk/cgi/oai2"},"display":{"title":"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","abstract":"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.","abstract_html":"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.","abstract_has_math":false,"creators":["Fishwick, Vanessa Ruth"],"institution":"University of Birmingham","degree_name":"d_cp","degree_level":"d_cp","degree_discipline":null,"degree_department":null,"school":null,"contributors":[],"advisors":[],"committee_chairs":[],"committee_members":[],"year":2009,"date_issued":"2009-12","date_published":"2009-12","updated_at":"2026-07-24T01:10:55Z","subjects":["BF Psychology"],"languages":[],"rights":[],"rights_urls":[],"identifier_entries":[]},"links":{"outbound_url":null,"outbound_label":null,"outbound_source":null},"metadata_groups":[{"id":"people","label":"People","entries":[{"key":"dc:contributor.sponsor","label":"Sponsor","values":["na"]},{"key":"dc:creator","label":"Author","values":["Fishwick, Vanessa Ruth"]}]},{"id":"academic_context","label":"Academic Context","entries":[{"key":"dc:date","label":"Dc Date","values":["2009-12-15"]},{"key":"dc:date.issued","label":"Date","values":["2009-12"]},{"key":"dc:publisher.department","label":"Dc Publisher Department","values":["College of Life & Environmental Sciences","School of Psychology"]},{"key":"dc:publisher.institution","label":"Dc Publisher Institution","values":["University of Birmingham"]},{"key":"dc:relation.isreferencedby","label":"Dc Relation Isreferencedby","values":["http://etheses.bham.ac.uk//id/eprint/383/"]},{"key":"dc:type","label":"Dc Type","values":["Thesis"]},{"key":"dc:type.qualificationlevel","label":"Dc Type Qualificationlevel","values":["d_cp"]},{"key":"dc:type.qualificationname","label":"Dc Type Qualificationname","values":["d_cp"]}]},{"id":"subjects_keywords","label":"Subjects and Keywords","entries":[{"key":"dc:subject","label":"Dc Subject","values":["BF Psychology"]}]},{"id":"identifiers","label":"Identifiers","entries":[{"key":"dc:identifier.uri","label":"Identifier URI","values":["http://etheses.bham.ac.uk//id/eprint/383/1/Fishwick09ClinPsychDvol1.pdf","http://etheses.bham.ac.uk//id/eprint/383/3/Decl_IS_Fishwick09ClinPsychD.pdf"]}]},{"id":"additional","label":"Additional Metadata","entries":[{"key":"dc:description.abstract","label":"Abstract","values":["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."]},{"key":"dc:format","label":"Dc Format","values":["text"]},{"key":"dc:title","label":"Title","values":["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"]}]}],"canonical_facts":{"dc:contributor.sponsor":["na"],"dc:creator":["Fishwick, Vanessa Ruth"],"dc:date":["2009-12-15"],"dc:date.issued":["2009-12"],"dc:description.abstract":["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. 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