Socio-demographic characteristics of participating mothers of sons with severe haemophilia (n=15)
| VARIABLE | NUMBER (%) |
|---|---|
| Mother as the main caregiver | 15 (100%) |
| Nationality | |
| Iranian | 13 (87%) |
| Afghani | 2 (13%) |
| Age of mother | |
| Mean | 37.6 years |
| Range | 30-45 years |
| Age of child with severe haemophilia | |
| Mean | 10.5 years |
| Range | 6-14 years |
| Age of child at diagnosis | |
| Mean | 5.8 months |
| Range | 3-20 months |
| Family history of haemophilia | |
| Known family history | 4 (26%) |
| No/unknown family history | 11 (74%) |
| Previous knowledge of haemophilia | |
| Had knowledge about haemophilia before child’s diagnosis | 4 (26%) |
| No knowledge about haemophilia before child’s diagnosis | 11 (74%) |
| Prophylaxis administration | |
| Mother administers prophylaxis | 12 (80%) |
| Prophylaxis administered at hospital | 3 (20%) |
| Adjustments for child’s safety within the home | |
| Safety protocols in place | 9 (60%) |
| No safety protocols in place | 6 (40%) |
| Education level of mother | |
| Associate degree | 1 (7%) |
| Master’s degree | 2 (13%) |
| Bachelor’s degree | 2 (13%) |
| Diploma | 6 (40%) |
| Elementary school | 2 (13%) |
| Illiterate | 2 (13%) |
Further supporting quotes for themes identified in the psychological experiences of mothers of boys with severe haemophilia in Iran
| THEME | SUB-THEMES | |
|---|---|---|
| Daily emotional experiences | “I consider myself guilty. So, I must do my best for my son’s future till he grows up perfect and healthy.” [Participant 10] | |
| “Sometimes I say to myself, I wish I didn’t give birth to such a person who has to endure these challenges because of my wrong decision, however abortion was like killing my own child.” [Participant 1] | ||
| “I agree that I get angry fast especially when he is nervous. I try to be relaxed and negotiate with him in these situations, but after five minutes when I see him not calming down I shout eventually.” [Participant 14] | ||
| Challenge of acceptance | “In the first two years after diagnosis, I had no normal life, especially in my relationship with my husband, but I noticed it cannot continue like this and I asked myself if there is a problem, what else do you want to do? So, I faced with difficulties and started again, then I coped with these problems gradually.” [Participant 12] | |
| Defence mechanisms | “I always try not to think about the annoying situation and distract my thoughts with something else.” [Participant 3] | |
| Coping strategies | Emotion-focused strategies | “I like to watch movies or read books and sometimes I do so during the physiotherapy sessions.” [Participant 12] |
| “We used to live in Arak and because of my son’s illness, we moved to Tehran.” [Participant 14] | ||
| Problem-focused strategies | “We came to this centre and the head nurse explained all I needed to know and answered my questions to take care of my son.” [Participant 11] | |
| “I realised something is not right so I preferred to visit a psychologist and he/she gave some practical recommendations.” [Participant 15] | ||
| Positive expectations for the future | “My only dream is about my children’s education. I wish to see them in the best scientific positions, which I couldn’t achieve it myself because of imposed restrictions by culture on women in my town. I specially encourage my affected son to study hard. Because of haemophilia, all physical job is prohibited for him.” [Participant 7] | |
Overview of themes and sub-themes relating to the psychological experiences of mothers of boys with severe haemophilia in Iran
| THEME | SUB-THEMES | |
|---|---|---|
| Daily emotional experiences | Depression | |
| Hate | ||
| Regret | ||
| Disappointment | ||
| Sadness | ||
| Shame | ||
| Anger | ||
| Embarrassment | ||
| Anxiety | ||
| Guilt | ||
| Fear | ||
| Challenge of acceptance | Acceptance | |
| Non-acceptance | ||
| Defence mechanisms | ||
| Rumination | ||
| Idealisation of children | ||
| Avoidance | ||
| Withdrawal | ||
| Splitting | ||
| Coping strategies | Emotion-focused strategies | Emotional drain |
| Daily activities for wellbeing | ||
| Problem-focused strategies | Medical migration | |
| Consulting with medical staff | ||
| Childbearing after having a boy with haemophilia | ||
| Consulting with a psychologist | ||
| Positive expectations for the future | Educational positive expectations | |
| Medical positive expectations | ||
| General positive visualisation of the future | ||