Children with Duchenne Muscular Dystrophy: Challenges, Coping and Caring

• Author(s): April G. Alap
• Paper ID: 1705418
• Page: 419-429
• Published Date: 26-01-2024
• Published In: Iconic Research And Engineering Journals
• Publisher: IRE Journals
• e-ISSN: 2456-8880
• Volume/Issue: Volume 7 Issue 7 January-2024

Abstract

This study investigated the life experiences of parents and family members caring for a child with Duchene muscular dystrophy through a Case Study Approach. Specifically, it answered the following questions: 1) How are the lives of parents and family members caring for the child with muscular dystrophy? and Based on the findings of the study what program could be develop for children and families of a child with Duchene muscular dystrophy? The researcher utilized the case study research design to explore the life experiences of parents and family members in caring for children afflicted with Duchene muscular dystrophy. Case study is concerned with studying the phenomenon in context to generate insight on how phenomenon actually occurs within a given situation. Two families were chosen as interviewees; composed of parents (father and mother) and family members (grandparent and uncle) who are caring for a child afflicted with Duchene muscular dystrophy. Furthermore, the location of this study is at Urdaneta City, Pangasinan. Duchene muscular dystrophy is a rare disease, and in this place the researcher has identified two families as participants of the study. In building a complex, holistic picture of the life experiences of parents and family members caring for a child with DMD various sources are highly complementary and good case study used many sources such as interviews, participant observation, and field notes to gather evidences. But before formal investigation, participants were invited through a formal letter received by them personally. Based on the stated problem, it was concluded that family experiences in caring for their DMD child started when family members noticed remarkable abnormalities in the child’s developmental milestones; such as-unusual walking, tip-toeing, frequent falling, difficulty in climbing stairs, rising from the floor with hand support (Gower Maneuver), difficulty maneuvering while riding a bicycle, and unusual pronounced calf muscle. These convinced them that there was problem about their child’s health and that there was a need for them to seek medical assistance. Furthermore, both families experienced emotional challenges in caring for their DMD children. At the start, there was a reaction of disbelief, rejection, guilt feeling, hopefulness, apprehension, distress, uncertainties, confusion, fear and disappointment. Economic challenges of the family in case #1; were with the parents becoming workaholic is evident while in case #2 there was a lack of financial resources. When it comes to the physical challenges, both families experienced tiredness. Lastly, disappointment and disheartedness were the social challenges which both families experienced. Despite all of these challenges, parents and family members caring for these DMD children use emotional coping mechanisms of harmonious relationships within themselves. Their ultimate resort is spirituality. By putting their trust in God, this made them accept that their being in that situation is God’s will; they now have a positive outlook in life. Lastly, based on the findings of the study a program was developed to improve the life experiences of children and families with Duchene muscular dystrophy

Citations

IRE Journals:
April G. Alap "Children with Duchenne Muscular Dystrophy: Challenges, Coping and Caring" Iconic Research And Engineering Journals Volume 7 Issue 7 2024 Page 419-429

IEEE:
April G. Alap "Children with Duchenne Muscular Dystrophy: Challenges, Coping and Caring" Iconic Research And Engineering Journals, 7(7)