study to assess the effectiveness of Multifactorial Nursing Intervention on knowledge Clinical Features and Quality of life among adults diagnosed with sickle cell disease from tribal community Surat

Abstract

Sickle cell diseases (SCDs) is an emerging public health challenge, not only in India but also globally. It has been estimated that, between 2010 and 2050, about 14.2 million babies will be born with sickle cell disease (SCD). According to ICMR survey Sickle Cell gene, India has a very huge population of tribal community about 18 crore and expected to have 1.80 crore Sickle Cell Trait and 14 lakhs of Sickle Cell Disease. ICMR took initiative in the year 1987 and again in 1999, to quantify the burden of Sickle cell gene in India through its multi centric project. Sickle Cell gene is found amongst different tribal groups of India, and prevalence rate varies from 5 to 34% and primitive tribes of south of Gujarat, viz; Kolcha, Kotwadia and Kathodi; 30 % of Sickle Cell Disease children die before they reach adulthood and the remaining 70 % die by the age of 50. newlineGujarat Sickle cell Society has stated that among 89.12 lakh tribal population at least 9,00,000 population were having Sickle Cell Trait and 70,000 were suffering with Sickle Cell Disease. According to WHO,10% of Sickle Cell Disease patients die by the age of one year and in many sub-Saharan countries mortality is much higher than that. newlineThis disease has not gained much concern at national as well as state level. Screening is not a common practice and the diagnosis is usually made when a patient presents with severe complications. Patients affected by SCD are frequently misdiagnosed and mistreated as most common iron deficiency (nutritional) anaemia with iron therapy. The primary need of this study is to establish network for filling up the gap of ignorance about Sickle cell disease among tribal community and increasing the awareness for sickle cell disease. The family counselling session is needed to help in capacity building of family members for delivering necessary care. newline newline