If you are in need of any assistance regarding the research below, please contact Jacob Gapko. Jacob is 45 years old with Duchenne. He has a BS, an MLIS, and is also a specialist. He can be reached at Jacob.Gapko@FamilyFriendsAndDuchenne.org
Experiences of Individuals with Duchenne
- Psychosocial Management of the Patient with Duchenne Muscular Dystrophy
- The relationship between quality of life and health-related quality of life in young males with Duchenne muscular dystrophy
- Variations in Duchenne muscular dystrophy course in a multi-ethnic UK population: potential influence of socio-economic factors
- The experiences of patients with Duchenne muscular dystrophy in facing and learning about their clinical conditions
- A review of quality-of-life themes in Duchenne muscular dystrophy for patients and carers
- Boys and Men with Duchenne Muscular Dystrophy Managing the Uncertainty of a Shorter Life
- Men living with long-term conditions: exploring gender and improving social care
Sibling Experiences
- Psychological and practical difficulties among parents and healthy siblings of children with Duchenne vs. Becker muscular dystrophy: an Italian comparative study
- Siblings’ life aspirations in the context of Duchenne muscular dystrophy: a mixed-methods case-control study
- Open communication of Duchenne muscular dystrophy facilitates disclosure process by parents to unaffected siblings
- Experiences of Women Who Have Had Carrier Testing for Duchenne Muscular Dystrophy and Becker Muscular Dystrophy During Adolescence
Parent/Caregiver Experiences
- A systematic review and qualitative synthesis of the experiences of parents of individuals living with Duchenne muscular dystrophy
- Duchenne muscular dystrophy and caregiver burden: a systematic review
- Burden, professional support, and social network in families of children and young adults with muscular dystrophies
- Psychological and practical difficulties among parents and healthy siblings of children with Duchenne vs. Becker muscular dystrophy: an Italian comparative study
- Mothers’ psychological adaptation to Duchenne/Becker muscular dystrophy
- Psychosocial Needs and Facilitators of Mothers Caring for Children with Duchenne/Becker Muscular Dystrophy
- Becoming a back-up carer: parenting sons with Duchenne muscular dystrophy transitioning into adulthood
Carriers’ Experiences
- Extended family impact of genetic testing: the experiences of X-linked carrier grandmothers
- Experiences of Women Who Have Had Carrier Testing for Duchenne Muscular Dystrophy and Becker Muscular Dystrophy During Adolescence
Potential Influences of Socio-Economic Class on Physical Health in Duchenne