Lived Experience of Jordanian Parents Having a Child with Duchenne Muscular Dystrophy

Area of Science:

• Pediatric rare diseases
• Genetics and inheritable conditions
• Qualitative health research

Background:

• Duchenne muscular dystrophy (DMD) is a severe, inherited condition causing progressive muscle loss in children.
• Currently, no cure exists for DMD, presenting significant caregiving challenges for families.
• Parental well-being is profoundly impacted by the demands of caring for a child with DMD.

Purpose of the Study:

• To explore the lived experiences of Jordanian parents raising a child diagnosed with Duchenne muscular dystrophy.
• To understand the unique challenges and coping mechanisms employed by these families.

Main Methods:

• A qualitative, descriptive phenomenological approach was employed.
• Interviews were conducted with ten pairs of parents of children with DMD in southern Jordan.
• Data analysis followed Colaizzi's 7-step method, incorporating verbal and nonverbal cues.

Main Results:

• Parents reported significant psychosocial, emotional, and financial burdens affecting family dynamics and quality of life.
• Key themes included confronting the diagnosis, managing daily care, maintaining social connections, and navigating career impacts.
• Emerging themes highlight the multifaceted nature of the parental caregiving experience.

Conclusions:

• Parents experience profound stress, anxiety, and hopelessness, often balanced by acceptance and mutual support.
• Coping strategies involve sharing emotions, self-assurance, and accepting the child's illness reality.
• Psychological counseling, peer support groups, and expert follow-up are vital for parental well-being and addressing service inequities.