Table 3 displays the themes, sub-themes and categories developed under the SEM domains (Table 3). Most children and adolescents (n = 18, 90%) had moderate to complex CHD severity  with diagnosis occurring at a median age of 1-year (range 0–7 years), surgery at 0–11 years and a median follow-up time of 4.42 years. Sixty-five percent of the children and adolescents had a New York Heart Association (NYHA) class I, and 25% reported class II. More than half the children were taking cardiac medications (Supplementary file 3).
Unrealistic expectations of surgery
Parent participants frequently described their initially unrealistic expectations of corrective surgery as a cure for complex defects. Consequently, parents were surprised when the child’s functional challenges continued, sometimes worsening and further reducing perceived HRQOL. The mother of Wahab (6-year-old male with Tetralogy of Fallot -TOF repair and multiple hospitalisations) explained: “I thought he would be alright … But after this surgery, I had to face even more problems for him.”
Impact of residual CHD on daily functioning
Parents described persistent, disabling CHD symptoms that had a pervasive effect on the daily functioning of their child/adolescent. For instance, altered sleeping habits due to tachycardia and tachypnoea had a perceived negative impact on growth, schooling and social inclusion and important religious milestones. The mother of Kashif (5-year-old boy with Blalock Taussig – BT shunt) explained the impact of fatigue on his learning: “He gets exhausted … then sits quietly in a corner and doesn’t talk to anyone.”
Education as an important individual strategic resource
Despite many participants living in poverty, 20% of the mothers and 45% of the fathers had a university degree. Educational achievement was seen as an important strategy to gain resources, maximise future earning potential, and bolster financial security. Therefore, when asked what they believed was important to their child’s HRQOL, parents of children and adolescents requiring surgery for CHD commonly identified current or future educational attainment as an important element. Parents then, logically, expressed great concern when schooling was interrupted by symptoms or surgery. The mother of 6-year-old Wahab exclaimed: “How will he catch up with his peers in school and … cope with his studies? Learning to write, read and keeping pace in school is our utmost concern.”
Poor health literacy within social networks
Participant’s narratives revealed often low levels of health literacy both generally and specifically for CHD in themselves and their family and friends. This poor understanding of the causes of CHD created a stigma that impacted children at an interpersonal level because people within the immediate social network reacted to the child in a way that classified the child at best as different, and at worst, dangerous.
As expressed by the father of Sajda (14 years female with TOF repair): “They [neighbours and family members] say “Keep your child away from ours. I am afraid she will transmit this disease to my daughter.”
Strong kinship ties as a resource
Approximately half the families lived in an extended family structure. Participants emphasised the significance of their strong kinship ties in providing emotional and moral support mitigating, at least in part, the stressors of parenting a child following CHD surgery. “I am so thankful to God as my family members … supported me a lot.”
Approximately two-thirds of these families were living below the poverty line . Families discussed the considerable financial burden that arose from their child’s surgery and this added to their stress and uncertainty about their child’s care. The father of Nabeel (7-year-old boy with BT shunt) explained: “My child’s operation cost 10 to 12 lacs rupees [6,000 to 7,000 USD] which I could not afford … On the one hand, I was worried about the disease and surgery and on the other hand about finances.”
For some parents, only the initial surgical costs could be covered. This meant that any subsequent and necessary re-operation was not possible, leaving the affected child at risk of deterioration and parents feeling guilty. Money spent on CHD and surgery impacted the whole family resulting in restrictions in other areas of family expenditure. This could be a source of marital discord as the mother of Mehmood (15-year-old boy with Ventricular Septal Defect -VSD closure/Patent Ductus Arteriosus -PDA ligation) articulated: “If a child has health issues … the money earned goes to hospital bills … fees and treatment, and there isn’t enough money left for life’s other necessities. As husband and wife, we started having frequent … fights because of this.”
Mothers as sole primary care providers
It seemed that family and society had high expectations for the all-encompassing nature of the mothering role, made more difficult by the care needs of the sick child, often in a family with several siblings. This meant mothers experienced multiple caring stressors and were frequently isolated by their role as the sole primary care provider. This was most evident after the child was discharged from surgery and social isolation, fatigue and guilt were pronounced. Mehmood’s mother explained:
“This is a big issue in our society, that a child is the complete responsibility of the mother … You cannot go anywhere. Your sleep pattern, social activities, everything gets disturbed … If you are giving [the sick child] special attention, then the other children [siblings] feel negative.”
Unclear expectations at school
Poor understanding of the child with CHD’s capacity to participate in physical activity meant frequent overprotection at school, and activity restrictions, with the potential for pervasive negative effects on the child, socially and developmentally. The father of Irfan (6-year-old male with TOF repair) explained:
“The sports teacher asked him to sit in one place during his sports session … If he feels neglected in school, he will lose interest which will create a very negative impact on his personality.”
Poor access to family counselling
Psychological and other specialist counselling support was lacking, including counselling for family planning decisions. The lack of family planning support was of particular concern for parents with additional, young children, as the care of their sick child exacerbated the stress of their overall caring roles. Parents saw this as an important omission, given the sick child’s difficult journey, the heavy parenting demands, and the fact that that some congenital defects are hereditary. The father of Mehmood suggested: “Parents should be counselled during pregnancy … Other than the cardiologist, a child should also have a psychologist consultation … Genetic counselling should be provided … if they are planning for another pregnancy.”
Poor clinical education resources
The participants’ own poor understanding of CHD surgery suggested a lack of appropriate, formal information resources. They believed more information about the likely outcomes of surgery, delivered in suitable language, would help them prepare for their child’s outcome and care. Laila’ mother explained: “There should be a brochure for the parents, with practical information about important things for the child’s health and family functioning after surgery.”
Community and socio-cultural factors
Religion and trust in God
Religion played a significant role in creating a sense of fatalism about CHD that shaped the illness and caring experience. Parents perceived CHD as the will of God, and therefore expressed their submission to God, considering His divine power. The mother of Fatima (9-year-old girl with BT shunt) explained: “Life and death is in Allah’s control. All we can do is to provide the best to our child … a good quality of life.”
In making decisions about surgery, three participants pursued “Istakhara” - an Islamic ritual for decision-making when a person is faced with a dilemma. They believe that through this act, the person receives an indication of God’s wish either through a resolution of obstacles, through obvious assistance from nature, and/or perceiving an answer through one’s dreams. As expressed by the father of Sajida (14-year-old female with complex CHD): “We went for Istakhara which took us a few months and we got the indication to go for surgery”.
While some participants considered their child’s CHD as their fate or God’s will, their faith in God also provided a sense of validation which, in turn, helped them cope with CHD. There was a sense that God would not let people suffer unnecessarily and that prayers and religious rituals could influence the survival and health of their child following surgery. People’s strong Islamic belief in God as the provider of everything was expressed by Laila’s mother: “I always pray to God [Allah] … You are the biggest doctor of all... Everything is possible for You.”
Indeed, for some participants, CHD was perceived in a positive way, sometimes as a divine test that ultimately strengthened people who faced such a trial. The mother of Perveen (15-year-old girl with VSD closure) explained:
“We believe [Perveen] is special because God chooses those who can bear such a problem … [At first] I cried a lot … Then I saw children with worse health and thanked God that He has given us this hospital and she received treatment.”
As a result of the impact of CHD on their child’s education, some parents replaced secular education with a common alternative path of religious scholarship. However, the mother of Abdullah (6-year-old boy with Glenn shunt) felt this option was no longer open to her son due to the cognitive challenges he was facing: “I wanted to make him Hafiz e Quran [a person who has memorized The Quran], but now I think that it would be very challenging for him [cognitively]. A normal child can do it.”
CHD as a gendered experience
The influence of an overall societal view about the value and role of females was evident throughout the interviews, particularly in relation to marriage. For females, future marriage was described as a source of financial and social security, with accountability for a woman’s welfare eventually shifting from her parents to her husband and in-laws. If CHD and/or surgery became an obstacle to marriage, a female child could become destitute. The father of Kainat (13-year-old girl with TOF repair) explained his fears:
“Who will take care of her when we are no longer in this world? We have heard people with heart issues do not … or should not get married. So this makes us worried that she is a girl. Who is going to look after her, and to what extent? These thoughts make us feel helpless.”
Given the expected financial burden of CHD surgery, parents of females were faced with the opinions of family and friends as to whether the investment in surgery for girls would be worth the return. Family’s reservations about either the initial surgery or re-operation also arose from the non-curative nature of some surgery, and the potential increase in life-long dependency (versus earlier death). The mother of Lubna (7-year-old girl with TOF repair) explained: “They [family] used to say now she will be dependent, and I will have to carry her in my arms for her whole life”.
The value of a female who does marry is often measured by the work contribution she can make to her husband and his family. As a result, these parent participants feared their daughters with CHD would not be valued. Kainat’s mother explained: “She will have more surgery and her hand is not working because of a stroke. So we are worried if she gets married, how she will manage with her in-laws and fulfil their expectations?”
Not all participants faced this. The mother of Sumera (15-year-old girl with Fontan procedure) acknowledged the support and encouragement of her husband during the crucial period of their daughter’s diagnosis and surgery:
“I am so thankful … especially to my husband … We didn’t think as our society thinks … we did what we should as parents. We went through two operations for our daughter without considering her status as a girl.”
Because a girl’s appearance was vital to marriage prospects, the surgical scar was a pivotal factor in acceptance of the need for surgery. Some participants sensed their community prioritised avoidance of potential scarring above the child’s health needs and this was distressing. Sumera’s mother revealed: “They believe … she shouldn’t have had surgery. ‘She is a girl and it looks so bad’ … They don’t realize the problem [serious CHD] behind this surgical scar …”.
Mothers, therefore, assisted their daughters to hide their scar with either high neck clothes or a “hijab” (a scarf worn by Muslim females which covers the head, neck, shoulders and chest). According to the mother of 15-year-old Perveen: “Girls wear open neck dresses, but she avoids it … and often complains she cannot wear good dresses …”.
In striking contrast to the negative attitudes towards girls with CHD, parents reported their family and friends exhibiting a particular preciousness towards CHD-affected boys. Salman (2-year-old boy with Coarctation Of Aorta-COA correction) was the only male child in the family and his father expressed the influence of gender on the level of family support: “He was born after my three daughters, that’s why no-one said anything to him … and had sympathy towards him.”
Male circumcision is considered a significant socio-cultural ritual in Pakistan, normally performed on male children during the first days after birth. However, early diagnosis of CHD and the need for surgery could challenge expectations of parents and family around this normal cultural ritual. Father of Tanveer (3-year-old boy with Total Anomalous Pulmonary Venous Return - TAPVR) explained: “My child did not have circumcision [musalmani] as doctors told us [to delay it] … All my family members ask me why it hasn’t been done.”
Public policy factors
Lack of antenatal and CHD services
Participants described poor availability of, and access to, specialised pediatric cardiac and antenatal health services in Pakistan, which had a substantial impact, particularly for rural patients and families. Diagnosis of CHD seemed to occur at a later age than normally reported in HIC settings. Qasim (7-year-old boy with Glenn shun, and complex CHD diagnosed at one week of age) lived in rural Pakistan. His father believed that had Qasim received his CHD diagnosis during the antenatal phase, the family would have been better prepared to face the emotional consequences, and more importantly, to manage the longer-term logistics of their child’s health:
“If our child was diagnosed during pregnancy, or at birth, we would have been mentally ready and things could have been managed better … We have to take our child to Karachi [Pakistan’s main city] for his check-ups … If a problem occurs during the night, how we can rush to Karachi? … It takes 2-3 hours to get there.”
Potential for integrated local services and resources
The lack of a publicly-funded health system contributed to family concerns about ongoing support for their child’s health problems. Several participants suggested potential solutions to improve aspects of HRQOL for their children, and their own parenting experience within this resource-constrained setting. These included follow-up phone calls from the hospital and the creation of support groups and community resources for patients and parents at the local level. The father of 6-year-old Irfan suggested structured learning activities for parents and children: “We all could learn from each other … and would benefit from the experience of other parents.”