Exploring the association between barriers to care in children with thalassemia major and their parents’ perceptions of primary care and quality of life in Kerman 2015

Background and Objectives: Parents do not have the sufficient perception of the care their suffered children receive. This study aimed to investigate the relationship between barriers to care with parents’ perceptions of primary care and quality of life in thalassemia major children in Kerman, Iran. Methods:  The study was Descriptive-analytical and Cross sectional study. It was conducted in 2015. The sample included 150 children aged 6 to 15 years with thalassemia major and either of their parents. Data were collected using 3 standardized questionnaires: barriers to care questionnaire (BCQ), parents’ perceptions of primary care (P3C), and the pediatric health related quality of life (PedsQL). To determine the association between demographic characteristics and barriers to care, the t-test and ANOVA were used. Correlation coefficient was used to determine the relationship between barriers to care and parents’ perceptions of primary care and health-related quality of life (HRQoL). Results: The mean and SD of BCQ was 63.93 (out of 100) and ±9.08, and the mean and SD for parent's perceptions of primary care (P3C) was 51.12 (out of 100) and±17.98. The mean score and SD of HRQoL reported by the children and their parents were (41.01 and ±22.38) and (40.63 and ±21.04), respectively. Perceived barriers to care was significantly related to the parents' perceptions of primary care (P<0.0001), HRQoL reported by children (P=0.021) and quality of life  reported by parents(P= 0.020). Conclusion: This study could provide important information for policy makers, managers, doctors, nurses and other health care team members and help them to develop and implement effective interventions to support children with chronic diseases and their families.