The demographic profile of children receiving dialysis and the education status of these children and their siblings is summarised in Table 2. The mean age of the children receiving dialysis was 15.27 (range: 12-18) years, and on an average, they were on dialysis for 4 years. There were 28 boys and 24 girls in this cohort. Seventy-seven percent of the children were unable to get a transplant due to unavailability of live-related kidney donors.

The socioeconomic status of these families, along with the indirect costs borne by the families especially to commute to the hospital are tabulated in Table 3. The median monthly household income was Pakistani Rupees (PKR) 24,000 (USD 2880) annually, with 80% of the families having a household income ranging between PKR 11,000 to 50,000 (USD 110-500) monthly. In 32 (62%) of the families, there was only one breadwinner, most commonly the father. Thirty-five percent of families had to migrate because dialysis facilities were not available in their city. Most of them used public transportation or rickshaws to commute to hospital, travelling up to 50 km, at a cost of PKR 536 ± 470 (USD 5 ± 4) and spending 6 to 8 hours in traveling to a session on an average.

To overcome the financial challenges, some families had to take extraordinary measures to generate other sources of income such as selling off their cattle, taking loans, getting help from relatives and neighbours, and renting out portions of their homes. In one family, the maternal grandmother of the child had to resort to begging to help her daughter with the additional financial burden that had befallen the family due to the child’s illness.

Seventy-seven percent of the children were receiving some kind of formal education before the initiation of dialysis, but after their treatment began, 91% of the children were deprived of education. When asked about the reason for this, more than 90% primary caretakers reported poor health. Others also stated that this was because time spent on travelling for dialysis resulted in missing many school days making it difficult for children to cope with their studies. Another parent voiced her concern about the child going to school, “He has to carry such a huge bag when he goes to school, and climb many stairs.” Another mother added, “I feel very scared. You know he has a fistula on his hand. What if he gets hurt?” Two parents, on the other hand, gave financial difficulties as the reason for discontinuing the child’s education.

In 35% of the families, the education of other siblings was seriously affected because of the ongoing dialysis of one sibling in the family primarily because siblings too had to drop out of school after the initiation of dialysis.

The validated questionnaire used for screening the anxiety-depression complex identified 19 (37%) primary caretakers with a score of more than 20, signifying the presence of symptoms of anxiety and depression. These questionnaires were reviewed by a psychiatrist at the institute, and those who mainly presented with somatic complaints were excluded. Eight (15%) caretakers were offered free psychiatric evaluation, of whom only two agreed to seek help. However, when asked about suicidal ideation/suicide, a majority of the caretakers responded with “Haraam [forbidden]” believing that such an act was one of “cowardice.” Participants also negated the impact of their symptoms by stating “Alhumdilllah [Thank God].”

Eighty-one percent of the families lived in nuclear settings. However, in 90% of the cases there were multiple family members providing extra support to the parents. This included elder siblings and grandparents who looked after the house when the parents were away with the sick child for dialysis sessions. In some cases, the neighbours helped, and in one instance, the landlord looked after the younger siblings when the mother was away with the child for dialysis sessions.

Case studies

Shehnaz , 48 years old, is Aasia’s mother. Aasia, now 18 years of age, has been coming to SIUT for dialysis since she was four years old. Apart from ESKD, she also has impaired vision and hearing. Shehnaz originally hails from a poor family in a small town of Sindh, about 200 km north of Karachi. Married when she was 20 years old to her paternal uncle’s son, Ahmed, a daily wager, she has undergone unimaginably difficult times.

Ahmed passed away when he was 45 years old, leaving her with seven children suffering from numerous health issues. Shehnaz’s eldest son, Latif died when he was 14 years old due to kidney failure. Her daughter, Yasmeen could only study until the 10th grade, and since then has been helping her mother with household chores and taking care of her younger siblings. Yasmeen has recently been diagnosed with kidney failure but does not require dialysis at the time. Shehnaz’s son, Nasir, has post meningitis sequelae acquired in early childhood requiring special attention. Another son, Dilshad could not continue regular school because of learning difficulties combined with a stutter, and now works with a local mechanic. Hamid is her youngest son, and goes to school.

Throughout these difficulties times, Shehnaz has drawn support from her father-in-law and paternal uncle. They live in a joint family system, and her basic financial needs are covered by her family.

She faces numerous issues in her commute to the hospital for Aasia’s dialysis since all the earning male members of the family work on daily wages. After Ahmed passed away, the family decided to discontinue Aasia’s dialysis. However, one day, “Asya ko jhatke lage, aur woh behosh hogaye. Mujh say dekha nahi gaya; mein usko Karachi le aye buss mein baith kay [One day, Aasia had a seizure and fell unconscious. I could not bear this; I immediately came to Karachi in a bus]”. When she was unable to pay for the bus ride, the conductor took pity on her seeing her daughter’s miserable condition.

At SIUT, Aasia was admitted to the ICU in a critical condition. She required mechanical ventilation but after almost one week, Aasia was back to her original state of health. Her grandfather came on the third day to inquire about their condition and then left. When Aasia was discharged, Shehnaz did not have enough money to take her home.

She took this problem to the doctor who took care of Aasia in the ICU. In her own words,

Doctor sahib ki ankhon me ansoo aa gaye. Unho ne us waqt jaib se ek hazar rupay nikal kur mujhe diye aur kaha ke ab hur maheene aap mujh se ye paise le lijye ga. Wo waqt hai aur aaj is baat ko 8 saal ho gai hai, wo pabandi se mujhe pehli tareekh ko paise dete hain.” [The doctor had tears in his eyes. He immediately took out a 1000-rupee note (USD6) and gave it to me. He told me to take money from him every month. It has been 8 years now and he regularly gives me money on the first of every month ].

Since then, a transporter has made special arrangement for Shehnaz to ride on specific buses with payment of just one seat with one-way tariff for a return trip. Shehnaz is grateful and has no regrets with continuing her daughter for dialysis, except:

Bus agar afssos hai to meri beti Yasmeen ke liye. Us ne kabhi aam bachon jesi zindagi guzari hi nahi. Humesha ghar ka khayal hi rukha. Ab meri bohat khwahish he ke us ki shadi ho jai leken koi humare ghar rishta nahi bhejta. Kehte hain in ke ghar me beemari hai [The only regret I have is for my daughter Yasmeen. She has never lived a normal child’s life. She has always taken care of the house. I wish that she could get married but nobody sends us a proposal. They say that we have disease in our family ]

Samina, 30 years of age, is the primary caretaker of her youngest brother, Hamza, who has been on dialysis since the past five years. The entire family lived in their own house located in a katchi abadi [slum] in Karachi. She has two older brothers and two older sisters, and three younger brothers, and two younger sisters. The older brothers and sisters moved out of the family house after marriage. Soon after their marriages, both of Samina’s parents died within a span of a few months, which positioned Samina as the head of the household.

When Hamza was initially diagnosed with the disease, the married siblings came forward to help. However, once they realised the chronic nature of the illness and the need for kidney transplant, their support gradually declined. The remaining members of the family including Hamza work to take care of the financial needs of the family. The brothers work as salespersons in a shop, while the sisters stitch clothes for a garment factory from home. Hamza has a small portable shop and sells chocolates, biscuits and other such goodies to children in the neighbourhood.

When Hamza was evaluated for transplant, his blood group matched only with his eldest brother, Rahim and youngest sister, Farah. Rahim refused to donate because he was afraid that donating a kidney would make him sick, as well. Married with two children, he believed his primary responsibility was towards his own children. Farah was 20 years old and single. Since the well-being of the donor is a top priority in every live-related transplant programme, Farah was not considered as an ideal candidate for donation. In SIUT’s experience, single women who donate kidneys are stigmatised and may have difficulty in getting married. The family therefore decided that Hamza would continue on dialysis until Rahim changed his mind.

During this time, Hamza acquired Hepatitis C, and did not respond well to the treatment due to side effects including fevers, body aches, and psychiatric complications such as agitation, and hallucinations. Samina recalls those times when it became extremely difficult for the family to take care of him. The financial burden also increased drastically since he required multiple out of schedule hospital visits. The siblings at home sacrificed their own needs, sharing additional household expenses.

When asked whether she ever thought about giving up Hamza’s care, and living her own life,

Doctor sahib, kisi ko qurbani deni partee hai. Agar hamaray waldeen aaj hotay tou alag baat hoti. Agar mein himmat chordun, tou kon khayaal rakheyga isska? [someone has to sacrifice If our parents had been alive, it would have been different. Now if I give up, who will look after him?]” She believed that her faith in God, “Buss mein dua mangteen hun [I pray to God]” allowed her to cope well with difficulties life had thrown at her, stating “Mujhe apne Khuda per poora yaqeen hai. Wo kisi ko us ki bardasht se ziyada takleef nahi deta [I firmly believe in my God. I don’t think He gives us more pain than we can endure.]

Discussion

This pilot study represents a single-centre experience of a tertiary care public sector hospital situated in a developing country where a large number of patients live below the poverty line.

One of the biggest burdens families face after initiation of paediatric dialysis is the financial one that goes well beyond the actual treatment costs. In developed countries, despite universal health coverage or adequate health insurance schemes, parents still report a significant financial burden, including parental inability to work efficiently, and difficulties encountered in working overtime [8]. Poor outcomes in families with low socioeconomic status have been reported in studies from countries with high GDP like the Netherlands [32], Saudi Arabia [11], New Zealand [33], the United States [34] and Canada [35].

The current study showed that for low-income families, high transportation costs (particularly when commuting from other towns/cities) made the supposedly “free” dialysis unaffordable. Reported financial challenges included having to borrow money, and selling off livestock to bear other expenses such as costs of relocation and transport expenditure associated with hospital visits at least twice a week. For such families, an illness can send the entire household into a financial catastrophe [36].

Geographic inaccessibility of dialysis facilities also compounds the problem [37]. The majority of dialysis centres tend to be situated in urban areas requiring long commutes for people living in rural areas, as well as permanent relocation to urban centres for some families. Long commutes not only carry a financial cost but also require caregivers to take time off from work resulting in a high opportunity cost.

The study revealed that one-third of the families had to change their permanent address after the initiation of the child’s dialysis. To move to a mega-city without sufficient resources, the entire family has to make sacrifices. Finding a nearby residence, job and educational facility for other siblings also prove extremely challenging. Previous studies have also documented that following the diagnosis of a chronic illness, caregivers experience disruption in their daily schedule [38]. A study conducted in India also indicated that families temporarily relocate to other cities but with the potential consequence of loss of livelihood for the entire family [39].

Unless health policymakers consider geographical accessibility, sustainability of dialysis treatment will always be under threat. A study from Indonesia has shown that despite the country’s commitment to providing universal health coverage for dialysis services, only 13% of ESKD patients had access to dialysis services, since only 10 of the 6000 inhabited islands in the country have a haemodialysis centre [40].

SIUT has been providing free treatment for more than four decades. In recent years, with the recognition that geographic accessibility may also lead to high drop-out rates, there have been attempts to open satellite dialysis centres located in different parts of Karachi. In addition, dialysis services are also being provided in some peri-urban areas to cater to high patient volumes and reduce transportation costs for patients and their caregivers.

The study also revealed that burdens extend well beyond the financial ones. Extended social support from other family members within the kinship network may be sought, and at times, neighbours can prove to also be a source of assistance. Ninety percent caregivers in the current study had other family members providing support. Even though there were only 20% families cohabiting in a joint family setup, with a few exceptions, the whole family participated in providing care. In most cases, elder siblings or grandparents looked after the household while the parents were away at the hospital. Case Study 2 above illustrates the extent to which the elder siblings had to make sacrifices in order to ensure continuity of dialysis for their younger brother.

The presence of this social support could be one of the key contributing factors that provides strength to parents/caretakers to continue the treatment of their child. For Shehnaz, in Case Study 1, her father-in-law and other members of the family took care of the family’s basic needs. A study from Brazil also supports this finding [41]. For families who lack external familial support beyond the immediate members, dropping out of the dialysis may be the only recourse.

However, the “darker” side of familial bonds and lack of support, should not be discounted. As evident in Case Study 2, the eldest brother, who would ideally be considered the “head” of the household in the absence of parents, showed extreme reluctance to donate his kidney to the younger brother since he believed his own children were a greater priority. This has been evident from other studies in this institute as well [42, 43].

Physicians practising in resource-constrained settings are cognisant of such realities highlighting them as a key dilemma in their clinical practice [44]. While paediatric nephrologists have a moral responsibility to ensure the benefit of their patients, who are all children with limited decision-making capacity, they are also forced to consider the social lives of the caregivers.

This brings to the fore the ethical responsibility of policymakers with respect to provision of adequate social support to parents/caregivers of these patients. This will mean that indirect and intangible costs need to be included in economic evaluations, a step which will be difficult to implement in low-income settings.

Lack of social support combined with constant stress on caregivers also makes them predisposed to psychosocial problems. The effect of a child’s illness on caretakers has been researched extensively [45, 46, 47]. Even in non-life-threatening skin conditions of a chronic nature, 36% of 118 parents screened positive for anxiety [48]. In a study of 60 families of children on dialysis by Fielding et al (1999) in England, multiple socio-demographic factors were identified that were associated with parental anxiety and depression. Lower socioeconomic status, large families, limited support from other family members and being parents of young children were identified as higher risk factors for developing depression [49].

In the current study, almost one-third of parents screened positive for symptoms of anxiety and depression. However, more than half from this pool exhibited somatic symptoms like frequent headaches, indigestion and fatigue. This is unsurprising since in Pakistan individuals, particularly women tend to present with somatic complaints of depression and anxiety [36, 37]. Symptoms of clinical anxiety/depression requiring psychiatric treatment were found in only 17% of caretakers.

Prevalence of depression/anxiety was expected to be much higher in this cohort due to the presence of risk factors such as lower socioeconomic status. However, low prevalence could be due to strong extended familial support [50]. Another possible explanation could be the role of religious faith as a coping mechanism. Several participants stated that since suicide was forbidden in Islam, they did not consider it. In a society in which religion pervades nearly every aspect of life, religious beliefs that condemn suicide can also cushion people against the negative mental health effects of chronic conditions.

A major impact was noted on education of children. Forty-one children had been receiving some kind of formal education earlier, but after the start of the treatment, the trend was reversed with more than 90% children not getting any formal education. Poor health was cited as the factor for this. In developed countries, special arrangements in the timing of dialysis are made to facilitate children’s education. Tutors are made available in the dialysis unit who ensure continuity of education [51]. In developing countries, such arrangements may not be feasible or too expensive to afford.

However, it raises a question whether policymakers have a moral responsibility to ensure a multi-sectoral approach to health. This would only come with the realisation on part of the government that poor health of one individual affects those close to them [52, 53, 54]. In order to ensure overall wellbeing of paediatric patients, it is important to consider innovative approaches to providing education, perhaps within the domain of skills-based trainings that allow individuals with chronic illnesses to lead fulfilling lives.

Chronic disability and illness of one child can affect other siblings. It impacts the upbringing, mutual relationships, family dynamics and behaviour of other siblings [55, 56, 57]. As this study revealed, 35% caretakers stated that the education of other siblings was affected. While this could also be due to the cost of education in itself, since participants of this study belonged to lower SES, it also highlights the number of ways in which the lives of other children in the family may be affected [58, 59, 60].

Other significant impacts were also noted on the patients’ siblings. In Case 1, Shehnaz’s eldest daughter, Yasmeen was unable to live her childhood to the fullest because she had to help her mother out with household chores. Yasmeen was also unable to get married because of the stigma due to the “disease” present in her family.

Caring for a child with chronic illness therefore has far-reaching consequences, figures not typically included in costs of treatment. This could be one of the reasons for high dropout rates. Although no official statistics are available from Pakistan, experience from India has demonstrated a high dropout rate of 47% in publicly funded dialysis facilities [60]. Similar predicaments have been reported from Brazil and Algeria [61, 62]. The high dropout rate should be a cause of concern for policymakers who invest with the noblest of intentions in the provision of free treatment for patients.

It becomes important then for physicians to be sensitive to these difficulties, and respond accordingly while offering treatment choices. [7]. It is therefore an ethical imperative for healthcare professionals (and the broader health system) to consider the sociocultural contexts from which patients and their families originate in order to minimise suffering.

While this study is novel in terms of its contribution to the literature from the perspective of Pakistan, there are some limitations. Since this is a pilot study with a limited sample size, the results are not generalisable. However, the case studies serve to supplement this limitation by adding a rich context. Furthermore, areas unexplored in the current work include detailed assessment of impact on siblings and role of religion as a coping mechanism, which are best addressed through a qualitative inquiry. It would also be worthwhile to look at families whose children have received kidney transplants and compare their quality of life with those families whose children are on dialysis.

Conclusion

The pilot study provides a glimpse into the lives of families severely impacted by to the initiation of dialysis in the kidney disease. It aims to give useful insights to physicians to deal with patients and their families in a more empathetic fashion, and to treat not only the disease, but also attempt to secure their well-being.

Disclosures: The authors declare that they have no financial and non-financial disclosures for this research.

Contributions: AL conceived and initiated the research as part of his thesis, collected and analysed the data, and wrote the manuscript. SS provided help in data analysis, and wrote the manuscript.

Statement of similar work: An earlier publication by the same two authors titled, “Ethical Challenges in Dialysis and Transplantation: Perspectives from the Developing World” published in Seminars in Nephrology in May 2021 covers some of the issues addressed in the current paper. The current work served as the bedrock for the development of the Seminars publication, but the latter goes beyond into areas of transplantation as well.

Acknowledgments: The research would not have been possible without the useful and constant guidance of faculty members at CBEC, SIUT including Drs Farhat Moazam, Aamir Jafarey and Bushra Shirazi. AL would like to acknowledge his daughter, Tasneem Ali for her contributions in proofreading drafts of thesis. The authors are grateful for the help from the institute’s psychiatrist, Dr Naim Siddiqui who helped in screening of caregivers for anxiety/depression.

^*Note: All names in the case studies have been changed to protect the individuals’ identities.