DEVELOPMENT AND STANDARDIZATION OF A TOOL FOR THE ASSESSMENT OF QUALITY OF LIFE AMONG THALASSEMIA CHILDREN AND THEIR PARENTS

Authors

  • Dr. (Prof.) Achamma Varghese
  • Dr. (Prof.) Usha Ukande

Abstract

Thalassemia is a disease in which single gene get disordered, called an autosomal recessive pattern of disease. This disease has group of symptoms like inadequate production of normal haemoglobin due to decreased erythrocyte production and till the end of life need frequent blood transfusion. For timely assessment of these children is must .The researcher conducted a methodological study for developing a tool to assess the quality of life of thalassemia children and their parents. A Sequential exploratory mixed Method design, the approach was Qualitative (Phenomenological), Quantitative (cross-Sectional) used .Tool developed by collecting the information through Delphi technique (face to face interview carried out by asking open ended questions to children suffer with thalassemia major and their family members (2 male child, 1 girl, 1 father, 1mother,1 adult and 1 sister and mother who lost brother or sister) and all verbal responses reco rded through voice recorder. Using software open code 4.02 word to word all verbatim typed, generated- items and subthemes), analysed items with extensive review literature, discussion with experts. Tool was validated in 3 rounds (8+30+ 15experts) and  the  Index of suitability: (IOS)= ∑ R/N =  90 to 100% agreement  found for all items. After Pilot study  250 Thalassemia Major children and 250 parents of Thalassemia major children  based on inclusion and exclusion criteria selected for the final study ,57 items on  5-point Likert scale (Strongly disagree, Disagree, neither agree nor disagree, Agree, strongly agree) used, RESULT: the frequency, Mean, SD followed by Inter item correlation was done, significant 49 items selected and 8 items (21,35,44,45,48,50,52,55) were deleted. The whole process was done by the help of SPSS.(a) For the QOL Assessment  scale for  Thalassemia major Children  :Value of Cronbach’s alpha (α) for whole scale with 49items were = .806  and  Spearman-Brown Coefficient was = .748.Factor analys was carried out  ,KMO =0.666(which is approximately 0.7 is acceptable  so was considered adequate to apply further evaluation. Communalities  found  was .469 to .730, Varimax rotation  further helped to assess how 49 achievement variables clustered under 14 factors have Eigen values >1.0 and all 49-variance distributed under F1 to F14. Further the confirmation of 14 factors carried out by scree  plot.(b) the quality of life of parents of thalassemia major children assessment scale :  27 items on  5-point Likert scale  applied 0n 250 parents of thalassemia children RESULT: the frequency, Mean, SD followed by Inter item correlation was done, significant 25 items selected and 2 items (5,21) were deleted. The Value of Cronbach’s alpha (α) for whole scale with  25 items were = .751 and  Spearman-Brown Coefficient was = .814.Factor analys was carried out  ,KMO =0.682(which is  nearly  0.7 is very good  so was considered adequate to apply further evaluation. Communalities  found  was .291 to .759, Varimax  rotation  further helped to assess how  25  achievement  variables clustered under 8 factors have Eigen values >1.0 and all 25-variance distributed under F1 to F 8. Further the confirmation of 8 factors carried out by scree plot. Hence the hypothesis made by the researcher i.e. the developed and standardized tool will be effective for the assessment of quality of life of thalassemia major children and for the assessment of quality of life of   parents of thalassemia major children at the level of p ≤ 0.05.

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International Journal of Nu rsing and Medical Science 2020:9(1) 01 - 36 IJNMS ISSN: 2454-6674

Dr. Achamma Varghese & Dr. Usha Ukande DEVELOPMENT AND STANDARDIZATION OF A TOOL FOR THE ASSESSMENT OF QUALITY OF LIFE AMONG THALASSEMIA CHILDREN AND THEIR PARENTS

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International Journal of Nu rsing and Medical Science 2020:9(1) 01 - 36 IJNMS ISSN: 2454-6674

Dr. Achamma Varghese & Dr. Usha Ukande DEVELOPMENT AND STANDARDIZATION OF A TOOL FOR THE ASSESSMENT OF QUALITY OF LIFE AMONG THALASSEMIA CHILDREN AND THEIR PARENTS

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Published

2020-02-13