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Abstract
Background: Hereditary neuromuscular disorders are progressive genetic conditions that significantly affect patients and their families, requiring comprehensive nursing support that integrates clinical care, emotional counseling, and genetic guidance.
Aim: To explore the lived experiences of nurses in providing support and counseling to individuals with hereditary neuromuscular disorders and their families in tertiary healthcare settings of Lahore, Pakistan.
Methods: A qualitative research design using the Grounded Theory Approach was adopted. Semi-structured, in-depth interviews were conducted with 20 nurses — 10 each from Lahore General Hospital and Services Hospital, Lahore. Data were collected through purposive sampling, transcribed verbatim, and analyzed using open, axial, and selective coding to identify emerging categories and relationships.
Results: The study found that nurses in Lahore provide multifaceted support to individuals with hereditary neuromuscular disorders and their families through empathetic communication, emotional counseling, and multidisciplinary teamwork. Their roles extend beyond clinical care to include genetic guidance, intergenerational monitoring, and psychosocial support—although the lack of formal genetics education and institutional support remains a key barrier to fully realizing holistic, patient-centered care.
Conclusion: Nurses play a crucial role in providing holistic support to individuals with hereditary neuromuscular disorders and their families through empathetic communication, genetic guidance, and multidisciplinary collaboration, though enhancing their formal genetics training remains essential to strengthen patient-centered care in Pakistan.