| Acceptance | Based on Spearman's Correlation analysis, there is no statistically significant relationship between stress-coping (r=−0.13, p=0.303), coping-social support (r=0.206, p=0.099) and stress-social support (r=0.216, p=0.084) |
Empowerment (n=2/14) “I have attended sessions conducted by hemophilia society and I feel courageous to handle the disease now.” Self-reflection (n=4/14) “I used to pray to God. but then when I see others, I feel we are better, what else could be done...” Resilience (n=1/14) “I never imagined; my child would get this disease. For his good health, I must be strong...” Adaptation over time (n=3/14) “I used to get tensed and sit and cry at night ...now that's my life I got used to it...”
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HCs express a feeling of being able to accept their condition due help from the patient organisation HCs have accepted the reality of lifelong disease Participation in support groups increases HCs’ confidence and knowledge
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| Social support | Based on Spearman's Correlation analysis, there is a mild positive statistically significant relationship between disease duration and social support (r=0.265, p=0.033). This indicates better social support for families who have been affected by haemophilia/which have included people with haemophilia for a longer duration. |
Support from husband/partner/teacher (n=4/14) ”My husband always says that ‘I am there, right, do not take any stress’ ...he is very supportive.” Support from haemophilia community (n=2/14) “I have attended sessions conducted by haemophilia society and I feel courageous to handle the disease now.” Spouse support (n=1/14) “He used to restrict me to go to the hospital but now it is not like that, he supports me...” Increased family care and support (n=3/14) “After knowing that he has this disease everyone takes care of him.” Family/friends (n-2/14) “I get always support from my friends... today he/she has accompanied me to visit centre.”
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HCs discussed the enduring support they received from husbands, friends, community, and the patient organisation, which has helped them cope over time.
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| Financial security |
Based on the Mann Whitney U test, there is no statistically significant difference in the average scores of stress level (p=0.367), coping (p=0.675) and social support (p=0.684) across family income. Based on the Mann Whitney U test, there is no statistically significant difference in the average scores of stress level (p=0.202), coping (p=0.295) and social support (p=0.899) across working status of mothers.
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Job sacrifice (n=2/14) “Due to my marriage, I left the job…” Financial constraints (n=2/14) “Now I must take care of him so. I cannot go to work.” Work-life Imbalance and employment challenges (n=4/14) “...My day just goes in dropping and picking him up from the school. It is difficult to go to work”
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| Role of family history | Based on the Mann Whitney U test, there is a statistically significant difference in the average scores of coping (p=0.019) across family history of haemophilia (Yes/No). However, this phenomenon is not observed in the case of stress (p=0.099) and social support (p=0.338). |
Lack of awareness and hidden family medical history (n=2/14) “They didn’t say anything... it was a great shock... mother's elder son had it... I do not even know...I did not even see him... Only my mother was aware... He expired at the age of 18... We did not know anything and couldn’t really understand anything.” Missed opportunity for Informed decision-making (n=4/14) “She got married when I was very young, and she never told me...otherwise, I could have tested and had my child aborted, and then we found out when my child was diagnosed with haemophilia after asking she said that even her kids have.”
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| Birth control measures | Based on Mann Whitney U test, there is no statistically significant difference in the average scores of stress (p=0.052), coping (p=0.837), and social support (p=0.280) across the decisions taken on birth control measures. |
[Emotional struggle in expanding the family (n=2/14) “It is difficult to see one more child with the same disease...” Family influence on reproductive decisions (n=2/14) “Family said having one more child which would be disease-free would-be better.”
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| Education | Based on the Kruskal-Wallis test, there is no statistically significant difference in the average scores of stress (p=0.397), coping (p=0.869), and social support (p=0.427) across education levels. |
Marriage impacts on education (n=??/14) “I got married and then I could not continue.” (Healthcare professional) “I was into accounts for six months. After that I got married. Then I did not go to continue.” (Finance professional)
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| Haemophilia burden |
Based on the Kruskal-Wallis test, there is no statistically significant difference in the average scores of stress (p=0.397), coping (p=0.869), and social support (p=0.427) linked with the child's haemophilia severity. Based on the Mann-Whitney U test, there is no statistically significant difference in the average scores of stress (p=0.128), coping (p=0.080), and social support (p=0.234) across haemophilia type.
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Family support in managing haemophilia (n=2/14) “My son is suffering a lot ...the members at home take care of him very well.” Emotional impact of restricted activities (n=4/14) “He feels bad that he cannot go out to play.”
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![Detailed representation of sequential explanatory study designQuantitative (first phase) and qualitative (second phase) research planned as a means of more meaningful results. Synthesis of quantitative and qualitative results is carried out as a final point to obtain a more detailed picture and to make the results more realistic and interpretable [16].](https://sciendo-parsed.s3.eu-central-1.amazonaws.com/67db2e828d1bec042eabb8f0/j_jhp-2025-0002_fig_002.jpg?X-Amz-Algorithm=AWS4-HMAC-SHA256&X-Amz-Content-Sha256=UNSIGNED-PAYLOAD&X-Amz-Credential=AKIA6AP2G7AKOUXAVR44%2F20251028%2Feu-central-1%2Fs3%2Faws4_request&X-Amz-Date=20251028T031428Z&X-Amz-Expires=3600&X-Amz-Signature=93c3f8d216618ecaa29f56a5795a51d6f055db2b748581b5d2b5014332fc7fa3&X-Amz-SignedHeaders=host&x-amz-checksum-mode=ENABLED&x-id=GetObject)