Full Text Available

Note: Clicking the button above will open the full text document at the original institutional repository in a new window.

Exploring the lived experiences of parents raising a child diagnosed with Duchenne Muscular Dystrophy (DMD) in South Africa : challenges and coping strategies

Mini Dissertation (MA (Counselling Psychology))--University of Pretoria, 2020.

Saved in:
Bibliographic Details
Other Authors: Eskell-Blokland, Linda
Format: Thesis
Language:English
Published: University of Pretoria 2020
Subjects:
Tags: Add Tag
No Tags, Be the first to tag this record!
_version_ 1867613517738147840
access_status_str Open Access
author2 Eskell-Blokland, Linda
author_browse Eskell-Blokland, Linda
author_facet Eskell-Blokland, Linda
collection Thesis
dc_rights_str_mv © 2019 University of Pretoria. All rights reserved. The copyright in this work vests in the University of Pretoria. No part of this work may be reproduced or transmitted in any form or by any means, without the prior written permission of the University of Pretoria.
description Mini Dissertation (MA (Counselling Psychology))--University of Pretoria, 2020.
format Thesis
id oai:repository.up.ac.za:2263/77200
institution University of Pretoria (South Africa)
language English
last_indexed 2026-06-10T12:37:24.815Z
license_str Other — see source repository
provenance_str_mv Harvested via OAI-PMH from UPSpace — University of Pretoria Institutional Repository
publishDate 2020
publishDateRange 2020
publishDateSort 2020
publisher University of Pretoria
publisherStr University of Pretoria
record_format dspace
source_str UPSpace — University of Pretoria Institutional Repository
spelling oai:repository.up.ac.za:2263/77200 Exploring the lived experiences of parents raising a child diagnosed with Duchenne Muscular Dystrophy (DMD) in South Africa : challenges and coping strategies Eskell-Blokland, Linda cgforman@gmail.com Forman, Casey-Garnett Psychology UCTD Mini Dissertation (MA (Counselling Psychology))--University of Pretoria, 2020. This study set out to explore the lived experiences of parents raising a child with Duchenne Muscular Dystrophy (DMD) in South Africa. It addressed the challenges and coping strategies faced by three married couples of children, specifically male children, who are affected by this degenerative and fatal genetic condition. Purposive sampling was used and themes were highlighted through semi-structured interviews, employing interpretative phenomenological analysis (IPA). Major themes found included the reactions to the diagnosis; facing many losses and experiencing anticipatory grief; and learning to adapt. It was found that parents tended to vacillate between hope, grief, avoidance and presence, depending on their perceived level of support, contextual factors, and social and economic challenges. It was important for the parents to plan in advance and gain practical information about the illness in order to implement the necessary changes. The adjustment process was shown to be complicated. The final theme entailed what it meant for each family to create a meaningful life beyond the loss, and to remain hopeful about what lies ahead. It was concluded that amidst the unique and far-ranging challenges experienced on a daily basis, the parents started making changes that have had a positive impact on the lives of their sons and the entire family. These parents have found ways of cultivating meaning and hope in their everyday lives, doing everything in their power to grant their sons fulfilling lives. The findings support the need to incorporate strategies into existing services and health promotion programmes to build on the parents’ support structures, enabling them to adapt to the challenges they face on a regular basis. Further research into the disease impact in a South African context is necessary to improve care provision and inform policy. Keywords: Duchenne Muscular Dystrophy (DMD); degenerative; fatal; genetic condition; male children; parents; lived experiences; challenges; coping strategies. Psychology MA (Counselling Psychology) Unrestricted 2020-12-01T07:00:20Z 2020-12-01T07:00:20Z 2021-04 2020 Mini Dissertation Forman, C 2020, Exploring the lived experiences of parents raising a child diagnosed with Duchenne Muscular Dystrophy (DMD) in South Africa : challenges and coping strategies, MA (Counselling Psychology) Mini Dissertation, University of Pretoria, Pretoria, viewed yymmdd <http://hdl.handle.net/2263/77200> A2021 http://hdl.handle.net/2263/77200 en © 2019 University of Pretoria. All rights reserved. The copyright in this work vests in the University of Pretoria. No part of this work may be reproduced or transmitted in any form or by any means, without the prior written permission of the University of Pretoria. application/pdf University of Pretoria
spellingShingle Psychology
UCTD
Exploring the lived experiences of parents raising a child diagnosed with Duchenne Muscular Dystrophy (DMD) in South Africa : challenges and coping strategies
title Exploring the lived experiences of parents raising a child diagnosed with Duchenne Muscular Dystrophy (DMD) in South Africa : challenges and coping strategies
title_full Exploring the lived experiences of parents raising a child diagnosed with Duchenne Muscular Dystrophy (DMD) in South Africa : challenges and coping strategies
title_fullStr Exploring the lived experiences of parents raising a child diagnosed with Duchenne Muscular Dystrophy (DMD) in South Africa : challenges and coping strategies
title_full_unstemmed Exploring the lived experiences of parents raising a child diagnosed with Duchenne Muscular Dystrophy (DMD) in South Africa : challenges and coping strategies
title_short Exploring the lived experiences of parents raising a child diagnosed with Duchenne Muscular Dystrophy (DMD) in South Africa : challenges and coping strategies
title_sort exploring the lived experiences of parents raising a child diagnosed with duchenne muscular dystrophy dmd in south africa challenges and coping strategies
topic Psychology
UCTD
url http://hdl.handle.net/2263/77200