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

Study participants were recruited from Mofid Comprehensive Care Center for Children with Haemophilia (MCCCH) in Tehran. For this type of research, it is recommended to include 5-25 participants until data saturation is achieved ^[20,21]. There are also recommendations to include 3 or 4 additional participants to ensure coverage of maximum variation of data ^[20,22].

For purposeful sampling, the inclusion criteria were: female caregivers between 18-49 years old, biological mothers of one son affected with severe haemophilia A or B and ability to come to the centre at least once a month. People with a serious psychiatric profile or who were unable to come to the centre were excluded. Selected participants were invited to interview by the supervisor head nurse of MCCCH.

Interviews followed an interview guide, with questions based on information from literature review and consultation with experienced health care practitioners (HCPs). The guide began with general open-ended questions (e.g. Tell me about the first days of diagnosis, how did you feel then? How did you manage the new reality of having a son diagnosed with haemophilia?) and went on to focus on challenges related to treatment, medication, prophylaxis and their interactions with HCPs, including the mothers’ feelings and coping mechanisms. Two caregivers were invited to participate in pilot interviews to assess the clarity and completeness of questions.

Informed consent, awareness of research purpose, interview process and withdrawal right were implemented on the basis of American Psychological Association (APA) ethical principles ^[23]. All interviews were conducted in person in a private room in MCCCH between May 2022 and July 2022. Interviews were conducted by a female member of the research team to take account of cultural considerations. All interviews were recorded and transcribed verbatim. The interviewer also took fieldnotes on non-verbal behaviours and emotional expressions during the interviews.

As part of the larger study, interviews were also conducted with experienced HCPs working in the clinic to better understand how they view the challenges the mothers experience. These took place after each interview with participating mothers and were referred to during data analysis. Findings from these interviews will be published elsewhere.

Data analysis was conducted using van Manen’s six-step framework ^[24]. As a first step, prior to interview, the interviewer observed participating mothers when they attended clinic and communicated with HCPs to understand their medical context. The second step involved investigating the lived experiences of the mothers through interview. The third stage involved thematic analysis of the interview transcripts, enabling hermeneutic phenomenological reflection on the essential themes. Analysis was undertaken using MAX. QDA software (2020). In the fourth step, hermeneutic phenomenological writing and rewriting were undertaken, and the fifth and sixth steps focused again on the study aim and interview questions to assess the part and whole of the mothers’ experiences. Data analysis was conducted by an academic psychologist at the University of Tehran (UT) and two Psychology Masters students, who coded independently. Themes were discussed among a multidisciplinary team from UT and the Shahid Beheshti University of Medical Sciences (SBMU).

To promote reliability and validity, findings from the analysis were triangulated with findings from the HCP interviews and rechecked with the head of MCCCH (a professor of paediatric haematology), the supervisor head nurse and the primary general physician of MCCCH, focusing particularly on perceptions of the mothers’ psychological challenges.

This study was evaluated and approved by the SBMU Research Ethics Committee at SBMU, approval ID IR.SBMU.RICH.REC.1401.009.

Daily emotional experiences refer to the phenomenology of emotionally relevant events, affective reactions, and associated cognition ^[25]. Emotions occur in combination and are difficult to distinguish, but during interviews participants indicated specific emotions including fear, anxiety, distress, guilt, disappointment, depression, embarrassment, shame, regret, anger and hate because of haemophilia-related challenges.

Fear, anxiety and associated psychosomatic symptoms were often related to hypervigilance and overprotection, especially after a child’s diagnosis.

“I’m so stressed and get nervous fast due to the smallest things, sometimes I feel pain in my fingers and my body is shaking because of stress.” [Participant 5]

As ‘carriers’ of the haemophilia gene, most participants considered themselves responsible for their children’s current and future suffering and challenges, and some reported feelings of guilt and sadness.

Caregiver responsibilities caused some restriction in mothers’ daily activities and impacted their personal lives, which resulted in some experiencing depression and disappointment.

“My daily activities are restricted noticeably because all of my time is spent on my son and it makes me more depressed and I know this depression is too major, nothing can make me happy and I’m so apathetic about everything, even the smallest things make me cry and I don’t care about my body anymore and it doesn’t matter to me whether I’m fat or thin and how I look.” [Participant 3]

Some mothers mentioned engaging in relaxing activities, such as using social media, to help relieve their feelings. However, they sometimes felt these conflicted with cultural values and were embarrassed about this.

“Chatting with others on social media makes me better, I know this is not good for me because it’s my weakness and I shouldn’t do it but afterwards I feel better emotionally.” [Participant 13]

Some participants who were aware of their carrier status before their child was born reported regret due to uncertainty about terminating their pregnancy, citing that this was due to cultural and religious reasons. These feelings were compounded by seeing how their children suffered with their haemophilia. Some also felt angry, particularly about having to impose restrictions on BWH in the family to accommodate other members of the family.

Acceptance of their child’s haemophilia diagnosis was a significant psychological challenge for the mothers in this study. ‘Acceptance’ refers to an individual’s compliance with the reality of a situation and recognition of a condition without trying to change it or denying it.

Over half of participants said they overcame this challenge and gradually accepted the difficulties associated with their child’s haemophilia diagnosis. However, there were also instances of denial and fruitless endeavours to change the reality of their child’s condition.

“I cannot accept my son’s haemophilia and his major bleedings. So, my partner took us to Mashhad (a religious city in Iran) and carried him on his shoulders to the holy shrine for several times for getting my son’s healing from God but something did happen for me, my tears are coming and I can’t stop crying, I’m always begging and asking this crucial question: God, how long does this child needs to suffer and what should I do? I’m really desperate.” [Participant 8]

For seven participants, acceptance was impacted by disease aggravation, such as their child suffering permanent damage to the knee joint as a result of bleeding, or personal crises, including the loss of family members.

Five defence mechanisms were reported by participants: idealisation, avoidance, splitting, withdrawal and rumination. Avoidance and rumination were most often applied.

Some mothers used idealisation, attributing exaggerative positive qualities to their children.

“He is so punctilious, if he sits here next to you, he will immediately get what you are going to say and also, he is so responsible and committed and patience about other’s mistakes.” [Participant 1]

Three mothers demonstrated idealistic expectations and attitudes about treatment methods in developed countries, expressing enthusiasm for therapeutic migration. Most of these therapeutic attitudes focused on the future and related to recovery of disabilities through short-term treatment or a definite remedy for permanent joint damage.

Some mothers used avoidance to dismiss unpleasant thoughts or feelings, or keep themselves from facing facts, people or places. While confronting some difficulties, some used a ‘splitting’ mechanism, drawing a distinction between good and bad parts of their situation (unit object).

“The problem is just the presence of the disease, not my son himself.” [Participant 11]

Some mothers used a withdrawal mechanism, taking back what they had said about their experiences and escaping from reality to fantasy.

“Thank God, well there are some issues in every family, which naturally includes us, but maybe we don’t have anything right now. In the beginning we had, yes, but not now.” [Participant 10]

Participants also described using rumination, distracting themselves with repetitive and more acceptable thoughts.

“I talk to myself all the time like I’m crazy and think about the past and review it and try to fix the problems in my mind.” [Participant 12]

The coping strategies employed by participants fell into two categories: emotion-focused coping strategies, where they attempted to regulate their feelings and emotional responses, and problem-focused coping strategies, where they coped with stress by confronting it directly and actively attempted to modify the situation ^[26].

Two types of emotion-focused coping strategies were referred to. Some mothers attempted to introduce regular, pleasurable daily activities to enhance their wellbeing. Others used an ‘emotional drain’ strategy, in which after experiencing powerful emotions for a while, they undertake actions which reveal them.

“Most of the time, I’m an aggressive person and scream or say whatever comes to my mind and cry, then I get relaxed.” [Participant 6]

Among the problem-focused strategies described, four participants referred to medical migration, specifically relocating to the Iranian capital, Tehran, from their home town/city or country so that they could access better services. Some mothers had sought therapeutic advice from HCPs, and some mothers had consulted psychologists and psychiatrists about family issues related to haemophilia.

Some mothers reported struggles and challenges around pregnancy and childbearing after having a child with haemophilia. In some cases, they tried to prevent pregnancy, and some chose to terminate a pregnancy to avoid the risk of passing the haemophilia gene to another child.

“I didn’t notice how I got pregnant and as soon as I figured it out, I had an abortion.” [Participant 8]

Most participants described feeling responsible for their son’s future status, and some emphasised having a positive perspective about the years to come. These positive expectations were therapeutic, academic and general.

Some mothers said they have a generally positive image of the future and visualise it as a dream.

“My son will take his engineering certificate, I will buy my pleasant apartment and all of my goals will be fulfilled, especially my favourite vacations. In the next five years I will never worry about my son’s medicine and we will go on every trip that we want together.” [Participant 8]

All positive expectations were somehow related to the therapeutic situation, but some focused more on medical issues.

“I told him don’t worry, this disease is treatable and will definitely improve as you get older, you can also prevent your gene’s mutation by innovative treatments, so everything is fine.” [Participant 8]

Education was presented by some mothers as a major achievement in their son’s life and a way to overcome some of the constraints (e.g. limitations on physical activities) associated with their haemophilia. For some, positive educational expectations also compensated for deficits in their own lives, for example those linked to cultural views about women’s education in some rural areas in Iran.

Further supporting quotes for each of the themes are provided in Table 3.

Due to the qualitative methods used for this study, there are limitations related to the generalisability of the results, both to developed countries and other less developed countries, and to caregivers attending healthcare facilities other than MCCCH in Tehran and in other provinces of Iran. The study also focused on mothers of BWH, and did not consider the psychological processes of other family members, such as fathers and siblings. It is suggested for future studies to pursue research in this area. Due to the large population of Afghan refugees and immigrants in Iran ^[39] and considering the limited coverage of insurance for them in the Iranian healthcare system ^[40], it is also important for further studies to focus on refugees and immigrants with BWH and their biopsychosocial challenges.