Study of knowledge of caretakers with children suffering from sickle cell anaemia regarding disease and prevention of transmission

Abstract

Introduction: Sickle Cell Anaemia (SCA) is a haemoglobinopathy that affects millions throughout the world. It leads to poor quality of the life and increased mortality in children and young adults. Objectives: The objective of the study is to assess knowledge of caretakers with children suffering from sickle cell anaemia regarding disease and prevention of transmission. Materials and Methods: This prospective study includes total 103 participants. All the patients with SCA admitted in paediatric ward fulfilling all the inclusion and exclusion criteria were referred to paediatric haematology clinic and their caretakers were interviewed there. Data were collected via a pre-tested, structured questionnaire filled in by a Research assistant who interviewed caretakers after obtaining both oral and written informed consent. Caretakers were interviewed about their knowledge regarding SCA, care of their SCA children and prevention of transmission. Necessary socio-demographic characteristics of the children and their caretakers were collected. Results: A total of 103 caretakers were enrolled into the study. Among them, 46%(n=47) had age between 26-30 years and majority of them were Hindu 85.4%(n=88) and from rural 84.5%(n=87), locality. 69.9% of caretakers had education less than or equal to 8 std.20.4% caretakers knew that SCA is an inherited blood disorder.14.6% were aware of carrier state of SCA. Amongst the various symptoms of sickle cell anaemia, most of the care takers had knowledge of joint pain 83% (n=86) and pallor 75% (n=78), followed by recurrent jaundice 45% (n=46). 58.25% (n=60) knew, it is diagnosed by blood test. Majority of respondents81.55% (n=84) knew their child should drink 10-15 glasses of water per day. Majority 78.64% (n=81) of them knew about importance of daily folic acid tablets.18.4% caretakers knew that sickle cell anaemia is preventable and 28.15% had knowledge about pre-marital screening of spouse of their diseased child. Caretakers who had othe