This Cross sectional Study was conducted in the Thalassemia Centre of Bahawal Victoria Hospital in Bahawalpur, Pakistan. Ethical Approval of this study was given by the hospital ethics committee. The study was carried out from March 2011 to August 2011. The non -probability convenient sampling technique was used. All Parents who brought their children for blood transfusion were approached during the study period from 9
am to 1
days a week, excluding Sunday and public holidays. Among them, only those parents who fulfilled the inclusion criteria were included in the study. The criteria were:
(a) established diagnosis of thalassemia of their child and the child was registered with the Thalassemia centre for regular blood transfusion.
(b) parents who provided consent for the study.
Only the mother or father of the child was included in the study. Grandparents and step mothers or step fathers were excluded from the study, and mothers with stepfathers were also excluded as they could have confounded the result.100 parents fulfilled the above criteria. Informed consent was taken from the parents who participated in the study. Data was collected on a questionnaire comprising 13 questions that was self designed to assess the psychological and social problems. In it following parameters were studied.
1. How much has this disease affected their normal life routine, like eating and sleeping habits?
2. Effect of disease on economic status.
3. Effect of disease on social life, i.e. relation with spouse and relatives.
4. Effect of disease on family size.
5. Desire to terminate the pregnancy if it would have been diagnosed prenataly.
6. Use of medicine to relieve tension due to this disease.
7. Would allow their children to marry a cousin?
The questionnare is attached as Additional file 1
This questionnaire was translated into the local language.
PHQ-9 was used to assess the degree of depression among these parents, and depression was scored according to the scoring card of the questionnaire. PHQ 9 was also translated into the local language. First, a pilot survey was done using these translated questionnaires. After testing these two questionnaires in a pilot survey, they were introduced for use in this study. The PHQ-9 questionnaire has 9 questions. It is directly based on the diagnostic criteria for major depressive disorder in the Diagnostic and Statistical Manual Fourth edition (DSM-IV). These questions are asked to assess symptoms and functional impairment due to depression within the last one month. For each question, four categories are given that either the situation had affected ‘not at all’, affected ‘several days in month’, ‘more than half the days in a month’, or ‘affected every day’. For each question, if ‘not at all’ was selected a 0 score was given, if ‘several days’ was selected a 1 score was given, if ‘more than half days’ was selected a 2 score was given, and if ‘every day’ was selected a 3 score was given. The scores of all 9 questions were added to give the total PHQ-9 score. On the basis of the scoring card, 5 categories were formed as follows.
Total score Depression severity.
1 to 4 minimal Depression.
5 to 9 Mild Depression.
10 to 14 Moderate Depression.
15 to 19 Moderately severe depression.
20 to 27 Severe Depression [8
Data was entered, stored and analyzed with the help of SPSS software, version 17.0. Frequencies were tabulated for demographic data as well as for psychosocial issues. Cross tabulation using Chi Square was done for educational level, inability to attend social gatherings, and drug intake of parents for their depression. p < 0.05 was considered statistically significant.