Exploring the psychosocial status and lived experiences of haemophilia carriers: a comprehensive mixed methods study

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...”

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

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.”

HCs discussed the enduring support they received from husbands, friends, community, and the patient organisation, which has helped them cope over time.

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.

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”

Leaving a job is not purely because of the disease burden

HCs feel their professional growth has stopped due to having children

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.”

HCs spoke about the reluctance of family members to discuss haemophilia

[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.”

Having another child in spite of knowing the risk

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)

HCs opted not to continue their profession due to marriage

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.

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.”

HCs feel they do not have a normal life