PSYCHOLOGICAL QUALITY OF LIFE OF PATIENTS WITH GENETIC MUSCULAR DYSTROPHY

Abstract

This qualitative research employs a phenomenological approach to examine the psychological quality of life among patients with genetic muscular dystrophy. Given the rarity of this condition, there is limited in-depth information and understanding across multiple dimensions. The conceptual framework of this study is grounded in the World Health Organization's psychological quality of life framework and the quality of life concept for individuals with disabilities. The research Key informants comprised 7 individuals: patients with genetic muscular dystrophy and their primary caregivers. Key informants were selected through purposive sampling, choosing patients with severe symptoms affecting their muscle condition and mobility. These patients were recommended by people close to them (snowball sampling), and the patients nominated caregivers. The main research instrument used was a semi-structured interview guide for in-depth interviews with open-ended questions. Data was collected through in-depth interviews and analyzed using content analysis. The research findings summarize the psychological quality of life of patients with genetic muscle dystrophy into five key aspects: 1) Psychological impact of the illness, 2) Acceptance of illness and disability, 3) Strength derived from love, encouragement, and spiritual anchors, 4) Positive perspectives on life, and determination for self-reliance, and 5) Support from family and social networks. The results of the study enable psychologists and related professionals to better understand the psychological quality of life of patients and to utilize this knowledge in the ongoing care of patients with genetic muscular dystrophy. Recommendations include developing a volunteer system, implementing case management care, and providing psychological counseling that supports self-acceptance and acceptance of assistive devices in daily life.