Experiences of family caregivers of children living with thalassaemia-major in Karachi: a phenomenological study

Abstract

Introduction Thalassaemia major, a global health burden, presents a growing challenge in Pakistan’s strained healthcare system. This study explores how caregivers of children with beta-thalassaemia major navigate healthcare services, aiming to identify facilitators and barriers to accessing optimal care.Methods A qualitative interpretative phenomenological approach was employed. In-depth interviews with 18 purposively sampled caregivers from Karachi thalassaemia centres were conducted. Thematic analysis using a combined inductive-deductive approach identified themes within the interview data.Result The study revealed significant challenges for caregivers at individual, interpersonal and organisational levels. Lack of awareness about carrier states, limited disease knowledge, financial constraints and concerns about the child’s future emerged as primary hurdles. Parents felt helpless due to the absence of emotional and social support for their children’s treatment. Obstacles such as complicated registration processes at thalassaemia-care centres, high costs of chelating agents and blood unavailability were major barriers to seeking care and caregiving. Additionally, the study highlighted the absence of guidelines for thalassaemia-carrier detection among mothers during antenatal care.Conclusion The study emphasised the importance of implementing premarital screening programmes due to the lack of knowledge about the disease and carrier state. To prevent the disease, it is crucial to include thalassaemia-carrier detection for mothers in antenatal guidelines and provide counselling at the primary level. Additionally, caregivers encountered treatment accessibility issues, prompting the establishment of a satellite thalassaemia centre linked to a top-tier tertiary care hospital in the public sector. This initiative addressed treatment challenges and improved overall care for patients with thalassaemia and their caregivers.