EXPLORING THE CHALLENGES AND BARRIERS EXPERIENCED BY PARENTS AND CAREGIVERS OF PATIENTS WITH THALASSEMIA: A CROSS-SECTIONAL STUDY OF AWARENESS, DISEASE BURDEN, AND MANAGEMENT PRACTICES

Abstract

INTRODUCTION: Thalassemia is a congenital hemoglobin disorder that passes from one generation to next and results in the body to make hemoglobin in a diseased pattern. The severity of the disease often remains immensely variable. Children with thalassemia suffer from the disease's consequences and treatment complications. The disease causes a negative impact on family members, who suffer mentally, socially, financially, and even physically. In this review, we explore the challenges experienced by the parents and caregivers of thalassemia patients; for instance, hindrance to get blood from donors, challenges in reaching thalassemia healthcare facilities, financial problems, difficulty in managing emotional and psychological state of their patients, socially isolation and challenges in professional life. OBJECTIVE: This cross-sectional study intents to explore the challenges and barriers experienced by parents and caregivers of thalassemia patients in District Health Quarter (DHQ) Hospital Mirpur, and Kashmir Blood Bank and Free Thalassemia Center Bhimber AJK. METHODOLOGY: This descriptive cross sectional qualitative study was conducted on 385 respondents using a self-structured questionnaire which was designed after reviewing various research articles. It was comprised of 22 questions to gather data from caregivers in wards of thalassemia center settings to explore their awareness and knowledge about thalassemia, to identify the complications of their patients and challenges and barriers experienced by caregivers of such thalassemia patients. A convenient sampling method was used where all the cases that meet inclusion criteria had been selected. RESULT: Majority of respondents 233 (60.5%) were males with age between 20-40 years and education secondary or above. A higher Portion of caregivers 341 (88.6%) were not familiar with thalassemia before their patient’s diagnosis. 205 (53.2) were not familiar with management strategies for thalassemia patients, 202 (52.5%) identified the complications of skeletal deformity, 186 (48.3%) faced challenges related to thalassemia patient education, 231 (60%) revealed that there are no support services available for patients and their families in their area. A significant percentage of caregivers 358 (93.0%) don’t think that government support them financially for the treatment of thalassemia disease, 233 (60.5%) revealed that they faced challenges in reaching thalassemia Healthcare facilities while 159 (41.3%) sometimes felt socially isolated due to their role as a caregiver or parent of a thalassemia patient and 149 (38.7%) faced challenges in their professional life due to their caregiving responsibilities.CONCLUSION: The findings of the study concluded that despite of highest literacy rate, majority of caregivers were not familiar with thalassemia and its management strategies, significant proportion of patients suffering from complication of thalassemia i.e. splenomegaly, hepatomegaly and skeletal deformities which causes immense psychosocial, physical, and financial burdens to patients and their families. The present study concluded that the parent’s awareness regarding the Thalassemia was inadequate and patients continue to suffer lot of complications ultimately leading to death. Parental knowledge regarding the Thalassemia management was limited.