Challenges of having a child with thalassaemia major: a phenomenological study

Abstract

Thalassaemia major is a chronic inherited illness that requires everlasting treatment with blood transfusions and chelating drug therapies. Primary caregivers, especially mothers, encounter many challenges when dealing with their affected child. This study aimed to explore challenges facing Jordanian mothers when having a child with thalassaemia major. A descriptive phenomenological approach was used. Mothers were selected purposefully from two major thalassaemia treatment clinics in Jordan. Semi-structured, face-to-face interviews were conducted and supported by a pre-prepared interview agenda. Colaizzi’s process of descriptive phenomenology was used for analysing interviewees’ transcripts. A total of 23 Jordanian mothers joined the study. A number of formulated meanings, categories and clusters of themes were instrumental in the emergence of three main themes: ‘unprecedented psychosocial distress’, ‘additional financial burden’ and ‘deficiency of knowledge and its sources’. The study revealed that rearing a child with thalassaemia entails suffering from different forms of challenges. Psychological distress, social isolation, worries, and fear of the disease and its future consequences were reported. Mothers showed that the added financial burden resulting from frequent hospitalisation and unpaid leave was a challenge. Deficiency in knowledge, including lack of knowledge about the disease and lack of sources of knowledge, was another challenge. Health education is a highly acknowledged and valued approach to lowering distress and challenges associated with rearing a thalassaemic child.

Introduction

Thalassaemia is one of the most common genetic blood disorders, characterised by a defect in the production of haemoglobin and a destruction of red blood cells. Beta-thalassaemia major is the severe form of thalassaemia whereby severe haemolytic anaemia develops (Hamamy and Al-Allawi, 2013; Modell and Darlison, 2008). The recommended treatment of thalassaemia includes both regular blood transfusions and iron chelation therapy (Al-Qaddoumi, 2006; Modell and Darlison, 2008; World Health Organisation (WHO), 2012). Parents, especially mothers, incur a great burden while dealing with a family member with thalassaemia due to overwhelming therapeutic regimens and recurrent sickness (Prasomsuk et al., 2007; Pruthi and Singh, 2010). Previous studies found that children with beta-thalassaemia major are prone to significant physical, psychological and social distress. Moreover, studies have suggested that parents and families of children with thalassaemia experience severe parental stress such as frustration, sadness, despair and helplessness regarding the disease of their child (Ammad et al., 2011; Ishfaq et al., 2014; Liem et al., 2011). Aziz et al. (2015) found that 82% of thalassaemic children’s caregivers showed their fear of the future and 66% of them revealed they had no pleasure in life.

In Jordan, despite the compulsory pre-marriage screening tests for the risk of thalassaemia, and wide-reaching national media programmes about the high risk associated with consanguineous marriage, the estimated ratio of thalassaemia carriers is 4–6% of the total population (Eleftheriou and Immonen-Charalambous, 2009; WHO, 2012). This refers to the popularity of this traditional form of marriage, which plays a major role in increasing the incidences of inherited disorders (Hamamy and Al-Allawi, 2013; Hamamy et al., 2007). Because Jordanian mothers are, in the main, the primary caregivers for those children at home, they have to respond to many challenges involved in caring for their thalassaemic child beyond what is already known. Despite these significant commitments, fathers in the Arab communities still hold the superior role of taking any decision regarding child therapy in the hospital, and little is known about father in-home support towards these sick children (Aziz et al., 2015). Therefore mothers, eventually, encounter even more stressors due to their expanded role while providing care for their child.

Health care providers are key personnel who should take into account the problem of inadequate knowledge of family/caregivers and continue in the role of supportive medical person, which was introduced during the child’s hospitalisation (Pruthi and Singh, 2010). According to a number of research studies conducted in this area, mothers have the best opportunity to receive education from health practitioners, especially when the primary objective of ordinary care is directed towards providing care and education for patients rather than family/caregivers (Ammad et al., 2011; Ishfaq et al., 2014). However, there is a paucity of evidence in Jordan about the challenges encountered by mothers whose children are suffering from thalassaemia during their infant and childhood days. For this reason, this study aimed to explore Jordanian mothers’ perspectives about challenges resulting from caring for a child with thalassaemia.

Methodology

Research design

This descriptive qualitative study employed the Colaizzi strategy (1978) for descriptive phenomenology (Sanders, 2003). Descriptive phenomenology is a research philosophy that functions to elicit evidence from the lived human experience (Polit and Beck, 2008; Speziale and Carpenter, 2007). According to Laverty (2003), phenomenology deals with the world as lived by a person, not the world or reality as something separate from the person. It is recognised in the literature that nurses use both descriptive phenomenology and interpretive hermeneutic phenomenology. Hermeneutics go beyond the basic description of concepts to place emphasis on embedded meanings of common life experience, not only from the individual’s point of view, but also in the context of social and historic effects (Borimnejad et al., 2006). Because it is effective for understanding the underlying meaning of individuals’ interactions with the surrounding environment, this research methods was the most appropriate to explore mothers’ experiences of living with a thalassaemic child (Lopez and Willis, 2004; Wojnar and Swanson, 2007).

Setting and sample

The participants were Jordanian mothers who had one or more children with beta thalassaemia major for at least 1 year. These children should have received thalassaemia treatment including blood transfusions and iron chelation therapy. Mothers were selected purposefully from two major thalassaemia clinics in the Ministry of Health in Jordan. It was ensured that all mothers selected in this study were the primary caregivers for those children. Mothers whose children had other medical or mental disorders were excluded from the study. Because the sample size of the study was not strictly determined in the early stages of the study, the preliminary number of subjects was set at 20 mothers. This number was subsequently assessed in respect of data saturation, which is proved when new coding is no longer possible and further redundancy of data becomes imminent (Guest et al., 2006).

Bracketing

Before starting data collection, the researchers declared and set aside their own beliefs, values and ideas about the experience of having a child with thalassaemia to ensure they did not influence the process of analysing the mothers’ experiences and perspectives (Creswell, 2007; Speziale and Carpenter, 2007).

Data collection

Data were collected using semi-structured, face-to-face interviews. These individual interviews were conducted by the primary researcher (GA). All interviews were held in a special meeting room located in the hospital in a convenient environment and at an appropriate time. The researcher started each interview by obtaining socio-demographic information including general questions about the history of the disease and the allocated treatment. As mentioned, the interview agenda was established to facilitate guidelines in the interviewing process (Abdul Wahab et al., 2011; Liem et al., 2011). The agenda included open-ended questions related to the experiences of mothers while providing care for their thalassaemic children. Each mother was primarily asked the following questions as a starting point of the discussion: What is it like for you to have a child with thalassaemia? Could you describe how having a child with thalassaemia affected your life? What are the challenges resulting from having a child with thalassaemia? Could you elaborate on problems you are facing in relation to having a child with thalassaemia? What are your concerns about your child’s condition?

The content of the questions was validated by a panel of two experts in this field of research. Interviews were conducted in Arabic and were digitally recorded. The researcher obtained permission from each participant to conduct short telephone interviews to check the credibility of the findings. Participants were informed that the average time of the interview was – but not limited to – 45 minutes.

Ethical approval was obtained from the Institutional Review Board at the Ministry of Health (number: 12/1/2015). Informed consent was given by each participant after sufficient verbal/written explanation about the study objectives and participants’ rights was provided. Assurance was given that participation was voluntary and would not affect their children’s treatment. Participants were also informed about the use of a digital recorder, their rights to withdraw any information they declared during interview and their right to withdraw from the study at any time. Participation was totally anonymous and confidential and each participant was given a code to be used subsequently for analysis and writing up.

Data analysis

In qualitative studies, data analysis can commence concurrently with data collection (Creswell, 2003, 2009; Speziale and Carpenter, 2007). All transcripts were translated and transcribed verbatim into English by both researchers. As mentioned, Colaizzi’s (1978) strategy for phenomenological data analysis was adopted comprising the following steps. First, the researcher read and re-read each transcript several times in order to understand the meaning of the content and to have a sense of the data. Significant statements related to challenges of having a thalassaemic child were then extracted from each transcript. These significant statements were written on separate sheets. After that, the researcher created the formulated meanings from these significant statements. The formulated meanings were sorted into categories, clusters of themes, and themes (Sanders, 2003). All emerged themes were checked to be internally convergent and externally divergent (Mason, 2002; Silverman, 2005). The last phase included the description of the emerged themes as well as the fundamental structure of the phenomenon.

Trustworthiness

To attain the utmost level of rigour of the study findings, the researchers undertook the following strategies. First, all participants were encouraged to use the ‘rich’ and ‘thick’ description of their challenges and experiences of having a thalassaemic child to ensure transferable findings (Creswell, 2009; Speziale and Carpenter, 2007). Cross-checking was applied by an external auditor to ensure the accuracy of the coding strategy reaching to the inter-coder agreements (Speziale and Carpenter, 2007). Although it is not a step of the Colaizzi process, participants were subjected to a second contact by a short telephone interview to check the accuracy of the study findings in order to ensure credible findings (Speziale and Carpenter, 2007). Finally, re-checking of translation process was performed for all transcripts by one professional translator, as advised by Creswell (2009).

Findings

A total of 23 Jordanian mothers participated in this study. The participant demographics are shown in Table 1. The majority of the participants (82.6%) were aged above 30 years old; 69% were housewives; 56% had achieved high school education. Regarding blood relationship with their husband: 14 (60.9%) of them were married to their relative, nine (39.1%) were not. The majority of mothers (18) had only one child with thalassaemia major and the remaining five had more than one.

Table 1.

Mothers’ demographics.

Variables	Number	Percentage
Age
≤30 years old	4	17.4%
>30 years old	19	82.6%
Employment
Yes	7	30.4%
No	16	69.6%
Educational background
High school	13	56.5%
Diploma	6	26.1%
University degree	4	17.4%
Blood relationship with husband
Related	14	60.9%
Not related	9	39.1%
Number of children with thalassaemia
One child	18	78.3%
More than one child	5	21.7%

Thematic analysis findings

Thematic analysis revealed 320 formulated meanings, which were grouped into eight clusters of themes, and eventually into three major themes: ‘Unprecedented psychosocial distress’, ‘Additional financial burden’ and ‘Deficiency in knowledge and its sources’. These emerged factors were grounded in participants’ perspectives, meaning that every factor developed in this study represents the entire feelings, experiences and intentions of participants based on their descriptions.

Unprecedented psychosocial distress

This theme explicates the effects of having a child with thalassaemia on the mother’s psychosocial life. Psychosocial distress was a very important issue discussed by mothers. They frequently reported that rearing children with thalassaemia had significant effects on their lives. Mothers considered the diagnosis of children with thalassaemia as a life-changing experience for them. They experienced a significant emotional and social burden. Participants had many concerns regarding the prognosis of thalassaemia, managing the side effects of blood transfusions and iron chelating therapy, physical changes associated with the disease, and the future of their children. This analysis was based on four clusters of themes as follows.

Overwhelming psychological feelings

Mothers revealed their feelings of sadness, depression, tenderness and guilt as a result of their roles towards the affected child. Shock and overwhelming guilt were some of the prominent responses after receiving the diagnosis of thalassemia for their children for the first time. The following quotations represent mothers’ experiences:

Till now, I cannot believe that my daughter has thalassaemia … I am really shocked to see her having a blood transfusion … I am very upset to see the venous injection sites on her hands … what can I do! (Participant 4)

When I was informed that my son has thalassaemia and he will need regular blood transfusions, I was completely shocked, I did not know what to say … I started to cry, I believed that it was the most difficult ordeal in my life. (Participant 7)

However, a mother with more than one thalassaemic child showed less intense worry about her children’s disease and treatment as in the following:

I am very depressed; it is a true disaster to see your son in pain and unlike other boys, but I can deal with him as his brother has suffered from the disease for more than 5 years. (Participant 3)

Self-dispraising

Mothers blamed themselves because they were carrying the disease genes and transferred it to their children, so they felt guilty. One mother said:

I cannot stop crying, I cannot tolerate this … I am the responsible person who made her sick …I am guilty. (Participant 12)

I promised to devote myself to my son because I caused this disease … it is my fault, I should not have married. (Participant 18)

Concern about the child’s future

Mothers in this study revealed their uncertainty, fear and worries about the consequences of thalassaemia and its treatment on their children’s lives. They were afraid about certain aspects of their children's future, such as their growth, development, education, employment and marriage. Mothers showed their wishes and efforts to enhance wellbeing for their children. This was evident in the following quotes:

I’m afraid about the future for my child … he is tired most of the time … I’m ready to do everything good for my child. (Participant 1)

My daughter is nearly twelve but she looks smaller than her friend, I’m afraid about her psychological status. (Participant 20)

Mothers having more than one child with thalssaemia expressed the same concerns about their children’s future, as one mother said:

I'm always thinking about the life of my kids who have the disease and asking myself if they will live normally like others … continue their education … get married … . (Participant 2)

Frequent absenteeism from school had also increased mothers’ worries about the future of their children. One mother said:

My son has left the school one year ago because of his disease and hospitalisation, I’m very anxious about his future … I wish for him to get better. (Participant 11)

Mothers’ social alienation

Mothers in this study revealed some social issues in relation to having a child with thalassaemia. They talked about the significant changes that had occurred in their social lives. Most mothers claimed that their social relationships had changed. For instance, they no longer visited their relatives or participated in social activities as they did in the past due to continual child care and the fragility of their moods. These two mothers said:

I stopped visiting my neighbours since the diagnosis of my son, I spend most of my time caring for my children, I have to care of my child who has thalassaemia including diet and medication, and hospital visits, I am busy all the time. (Participant 13)

I’m away from my friends … they do not believe I do not have time, I am really very busy … I have to stay beside my child … my son is more important than my friends. (Participant 22)

Additional financial burden

This theme reflects the mothers’ hardships coping with financial issues associated with caring for a child with thalassaemia major. Although the support provided by the Ministry of Health in Jordan was acknowledged by most of the mothers, they described thalassaemia as a very costly disease that needs life-long treatment with blood transfusions and iron chelation therapy. This theme was developed based on the following two clusters of themes.

Meeting the cost of care

Mothers complained about the cost of transportation when visiting the hospital for blood transfusions and follow-ups in addition to the children’s special food requirements and entertainment to decrease their anxiety and tension. One mother reported:

Here in Jordan the treatment of thalassaemia is free … also, the medications are free … thanks to God … but we need a lot of money to visit the hospital every month and sometimes every two weeks, and we pay a lot for buying special food for my children such as fruits and vegetables to keep our son healthy and also he needs to play games and have toys. (Participant 23)

Risk of job termination

Mothers raised another financial burden associated with often leaving work or taking unpaid leave because of frequent hospitalisation. In addition, mothers believed in their role to support the whole family economically through helping the fathers to meet the treatment expenses. The following excerpts illustrate mothers’ experiences.

I'm working in a private company, and I have to take unpaid leaves frequently or unpaid vacations during my child hospitalisation, I have to work and support my husband to cover all expenses of our child. (Participant 19)

I’m a teacher and because my daughter needs a lot of care such as giving medications at night and staying beside her to insert the desferal needle inside her abdomen, so I have left the school although I need to keep working and help my husband who does not earn a high salary. (Participant 16)

Deficiency in knowledge and its sources

As mothers interacting with their children on a daily basis, they expressed their deficient knowledge about thalassaemia: the causes, treatment, side effects of therapy, and their role as mother to their children. Many of the clinical symptoms were not understandable for mothers because of inadequate information sources. Consequently, knowledge deficiency added to the tension and confusion of the existing situation. This theme was formulated based on the following two clusters of themes.

Deficient knowledge about the disease

Mothers in this study appeared less knowledgeable about thalassaemia and its associated factors and this phenomenon was apparent in the majority of interviewed mothers. The following excerpts illustrate this problem:

Really I don’t know what thalassaemia is. At the beginning, the physician told me that my daughter has anaemia and asked me if I had thalassemia and I answered no … the physician told me that thalassaemia is a genetic disorder … but I did not know exactly what he meant. (Participant 14)

Some mothers still inquire about the relationship between marriage to relatives and the risk of thalassaemia. One mother reported:

My husband is my cousin and one of my sons has thalassaemia … , I would like to know why this disease happens to specific people. (Participant 6)

Similarly, those mothers with previous experience of thalassaemia appeared to have a deficiency in their knowledge about the disease, as one mother said:

I know that thalassaemia is a genetic disorder but I don’t know why one of my daughters had the disease while others are healthy … what about my next pregnancy? (Participant 10)

Lack of sources of knowledge

Mothers appeared uncertain and unable to find a trusted source of knowledge when they had such problems or questions. They unveiled a number of people who might provide answers when they needed any information, such as nurses and physicians, as well as printed sources. The following excerpts illustrate these sources:

I prefer to ask nurses because they are always available in the department but, unfortunately, they are very busy so I refer to other mothers who have a child with thalassaemia. (Participant 15)

Sometimes I ask nurses and doctors about my son’s condition, but … they are busy … therefore, I use the internet and read more to know what I have to do. (Participant 8)

In fact, I usually rely on these brochures to know about thalassaemia, I got a lot of information by myself, and I think that all the information written in these brochures is accurate. (Participant 5)

Discussion

It is not controversial that mothers endure many challenges while providing care for a child with thalassaemia. Although advancements in thalassaemia treatment are increasingly adopted, a range of barriers experienced by mothers may impede the appropriate access to the best quality of life. This qualitative study aimed to understand the challenges facing mothers when they accept the role of caregiver for their child with thalassaemia. It is acknowledged that the emerged evidence from the interviewed mothers may present a unique experience according to the nature of the mother’s role in the Jordanian community.

Unprecedented psychosocial distress

It was manifest that these mothers endured unprecedented psychosocial stressors, which adversely influenced their lives. Jordanian mothers have revealed shock and overwhelming pressure that resulted from the change in their role when informed about the diagnosis of their child. This psychological status was accompanied by feelings of sadness, depression, tenderness and guilt. This is congruent with an Iranian study by Sharghi et al. (2006), which indicated that mothers of thalassaemic children scored higher in having depression than other mothers in a control group. Other previous studies found that mothers whose children have thalassaemia had impaired quality of their life, physical weaknesses and psychological deterioration, in addition to a lower level of well-being (Mazzone et al., 2009; Pruthi and Singh, 2010).

Self-dispraising

This was one of the unique features found in Jordanian mothers. Mothers felt guilty having a child with thalassaemia due to their recognition of the genetic characteristics or issues of consanguineous relationships. While there is a limited number of research studies which have shown the same perspective, a previous study in Jordan found that mothers with a thalassaemic child recognised their responsibility towards the occurrence of the disease (Abdul Wahab et al., 2011).

Concern about the child’s future

Uncertainty about the future of a thalassaemic child was a predominant issue raised by participants. Mothers exhibited many worries about the future of their child, including their physical and mental growth, education, employment and marriage. Abdul Wahab et al. (2011) conducted a study in Jordan and found that many mothers all had the same concerns. Mothers in this study indicated their desire to improve their children’s health and achieve their normal wellbeing. However, studies showed there is a failure in nursing practice to elicit parents’ concerns about their child’s future (Ghazanfari et al., 2010; Mazzone et al., 2009; Wong et al., 2011).

Mothers’ social alienation

Jordanian mothers experienced changes in their day-to-day social activities as a result of being constantly with their children. Previous studies found the same alterations in normal social activities among the primary caregivers (Prasomsuk et al., 2007; Pruthi and Singh, 2010). Aziz et al. (2015) found that 56% of caregiver mothers complained of impaired social relations and 54% spent most of their time with their children. Another study in Turkey found that mothers with thalassaemic children complained about the inability to co-ordinate job requirements and child care, and a lot of daily activities became unimportant (Canatan et al., 2003).

Additional financial burden

The financial burden was another challenge encountered by the mothers, especially when the family has more than one child with thalassaemia. The cost of travelling was acknowledged as the main financial burden. Mothers also declared that they are forced to have frequent leave from work or take unpaid leave during their children’s hospitalisation. Former studies supported this premise that the financial burden is one of the greatest challenges of thalassaemic children’s caregivers (Canatan et al., 2003; Prasomsuk et al., 2007). It is acknowledged that the financial burden is not the total responsibility of the mother. The father, due to cultural norms, is the main person responsible for meeting every expense and requirement of the whole family, including the affected child (Abdul Wahab et al., 2011). Therefore, this theme would reflect the collaboration between both parents to pay the treatment expenses, especially when the additional cost resulting from thalassaemia treatment exceeds the financial capacity of the family income.

Deficiency in knowledge and its sources

Knowledge deficiency was another trait of the interviewed mothers. The need for further explanations and knowledge about the disease and its treatment was evident. It is known that lack of knowledge about thalassaemia and its treatment may induce unnecessary anxieties and distress among parents (Wong et al., 2011).

Deficient knowledge about the disease

Primarily, mothers were unaware of the genetic influence on thalassaemia incidence. It was apparent that the majority of participants were married to relatives, which is compatible with an Iranian study by Ghazanfari et al. (2010), who declared that 58.3% of parents of thalassaemic children are related. Deficiency in knowledge was not limited to the need for additional information; it was also associated with the need for more information about the therapeutic regimen, possible complications and effective caring strategies. Likewise, Ghazanfari et al. (2010) found that parents of thalassaemic children have a deficit in their knowledge about thalassaemia itself even though they were well educated. Health care professionals are key to assessing the learning needs of parents with regard to all aspects of thalassaemia (Ishfaq et al., 2014). Previous research supported the establishment of therapeutic guidelines that encompass a number of steps directed at family/caregivers, which would support the whole family and help them to embrace all aspects surrounding the child’s health management (Liem et al., 2011; Mazzone et al., 2009).

Lack of sources of knowledge

Jordanian mothers reported a limited range of accessible sources of knowledge when they have an enquiry about thalassaemia treatment or any other related issue. Basically, health professionals such as nurses and physicians were the primary human sources. Other mothers revealed readable sources such as the internet, brochures and leaflets. Although these accessible sources seem limited, the majority of previous studies indicated that similar sources were used (Pruthi and Singh, 2010; Wong et al., 2011). However, the presence of counselling teams within hospitals, or case management, was acknowledged as an effective strategy to enhance family/caregivers’ knowledge about the disease and its treatment (Borimnejad et al., 2006; Ghazanfari et al., 2010; Ishfaq et al., 2014).

Implications for practice

Understanding stressors and impairments among mothers who have thalassaemic children provides the basis for further development of the treatment strategy. Now the challenges facing these mothers are identified, health care providers are concerned with facilitating the delivery of holistic care including psychological, emotional and educational support for the primary caregivers. Eventually, the impact of this improvement should improve the functionality of mothers in sustaining their role and mitigating the impact of existing challenges.

Conclusion

In Jordan, where the number of thalassaemic children is growing, the concern for mothers’ quality of life is one of the substantial issues for successful thalassaemic child care. Mothers, who are the main caregivers, struggle with a number of psychosocial issues, financial burdens and deficiency in knowledge. It is acknowledged that the role of health care providers is vital in order to strengthen the role of caregivers. Health education provided by nursing and medical staff is the way to relieve the vast majority of these stressors and enhance mothers’ capacity to deal effectively with their children with minimal interruption of their day-to-day life activities.

Key points for policy, practice and/or research

• Mothers providing care for thalassaemic children suffer from psychosocial stressors that might exceed their capacity and tolerance.

• Knowledge deficit and financial burdens add further distress for these mothers.

• The ability of health care providers to discover these challenges is a mainstay of treatment.

• Support and health education are key to mitigating these stressors and improving the quality of life of mothers.

Biography

Ghada Abu Shosha is a researcher who mainly focuses on qualitative research in paediatric oncology patients. A number of published studies in this field were conducted in Jordan.

Mahmoud Al Kalaldeh is a researcher working in the field of nursing. His research interests include phenomenology and integrating evidence from qualitative studies.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship and/or publication of this article.