Effectiveness of Nurse Led Intervention on Health Related Quality of Life among Children with Sickle Cell Disease in Oman: A Pilot Study

Abstract

Introduction. The children with Sickle Cell Disease (SCD) generally have poor Health Related Quality of Life (HRQOL). The study aimed to evaluate the effectiveness of nurse led intervention on HRQOL among children with SCD. Methods. A total of 30 samples were selected using convenient sampling. Children with SCD and their caregivers completed Pediatric Quality of Life Inventory (PedsQL) SCD-Module version 3.0. The nurse led intervention was given to the study group for 10 consecutive weeks. The control group received the routine medical care. On completion of 10 weeks, the post-test was conducted. Results. The participants in study group had poor HRQOL scores P>0.05 in pre-test. After nurse led intervention, the HRQOL score in the study group significantly improved P<0.05. The control group did not show any significant difference in the pretest and post-test. Discussion. Therefore nurse led intervention is effective in improving HRQOL among children with SCD.

Health-related quality of life in hemoglobinopathies: A systematic review from a global perspective

“…Studies conducted in Oman and Iran focused on interventions designed to teach patients and caregivers how to manage and control the disease and the effect of such interventions on HRQOL ( 32 , 33 ). The 5A self-management model (Assess, Advise, Agree, Assistant, and Arrange) has been demonstrated to improve the quality of life of patients, as assessed through the Persian version of the SF-36 questionnaire administered before and after the administration of the 5A model ( 32 ).…”

“…The 5A self-management model (Assess, Advise, Agree, Assistant, and Arrange) has been demonstrated to improve the quality of life of patients, as assessed through the Persian version of the SF-36 questionnaire administered before and after the administration of the 5A model ( 32 ). Educational sessions on basic understanding of SCD and homecare management of signs and symptoms can significantly improve the HRQOL PedsQL score ( 33 ).…”

“…A problem that emerged in a multicultural context like the United States is that HRQOL assessment tools must be adequate to the population language, for example, for Spanish speakers of the Latino minority. A Spanish translation of the PedsQL-SCD module has been demonstrated to be a valid instrument for the measurement of HRQOL in patients and their families ( 33 ).…”

Health-Related Quality of Life of Children and Adolescents with Sickle Cell Disease in the Middle East and North Africa Region

“…Similarly, Pandarakutty et al reported that a nurse-led filial therapy and educational intervention resulted in a significant improvement in HRQOL scores among a group of children with SCD in Oman, particularly in terms of reducing emotions, improving knowledge, enhancing parental support and reinforcing family relationships. 65 i m p l i c at i o n s f o r f u t u r e r e s e a r c h The findings of this systematic review underline an urgent need for practical measures to improve the HRQOL of children and adolescents with SCD in the MENA region. Such initiatives should focus on increasing knowledge and awareness of SCD, developing support groups to enhance the psychological wellbeing of children and adolescents with SCD and their caregivers, mitigating the economic burden of care on the families of children with SCD and strengthening existing family, social and academic support systems.…”

“…reported that a nurse-led filial therapy and educational intervention resulted in a significant improvement in HRQOL scores among a group of children with SCD in Oman, particularly in terms of reducing emotions, improving knowledge, enhancing parental support and reinforcing family relationships. 65 …”