Psychological experiences of mothers of children with severe haemophilia in Iranian culture: A phenomenological study

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