Parental Experiences on Learning About and Caring for Children with Cleft Lip and Palate: A Qualitative Study from South India

Abstract

Objectives

The study aimed to understand parents’ reactions to cleft, the manner in which they learned about its presence, and the challenges they faced in caring for their child with a view to providing healthcare professionals insights toward enhancing care delivery.

Design

Qualitative in-depth interviews using the grounded theory approach were carried out with 11 mothers and fathers of children with cleft lip and palate (CLP) attending a cleft speciality hospital in Chennai city, in South India.

Results

Analysis resulted in the discovery of 5 core categories, learning about CLP—when and how, reactions and attributions to CLP, learning about and expectations from treatment, caring for a child with CLP and support systems. Feelings of shock and bewilderment when they learned of the presence of cleft in their child was reported by most parents. Poor awareness of cleft, difficulties in feeding, and concerns for the child’s future were major sources of disquiet. The presence of support from family and friends and interactions with other parents of children with cleft helped them to cope better.

Conclusions

The results highlight the need for enhancing understanding of cleft among parents and strengthening them emotionally, thereby empowering them to provide effective care for their child. There is an urgent need to develop standardized information materials for parents to ensure that they have clear, consistent, and reliable information on the care of their child.

Introduction

Cleft lip and palate (CLP) is one of the most common congenital malformations. In India, the number of children born with CLP is estimated at 28,000 to 35,000 per year, with approximately 78 affected infants born every day.¹ Studies from Chandigarh in northern India² and Tamil Nadu in the South³ have reported incidence rates ranging from 0.97/1000 to 1/1976 live births. In the absence of national epidemiological data on CLP in India, obtaining accurate incidence/prevalence rates has been difficult.

Diagnosis of Cleft

A prenatal anomaly scan carried out between 18 and 22 weeks of pregnancy can detect CLP, but can just as easily be missed owing to myriad reasons, like, the absence of any risk factors in the mother, position of the fetus during the scan, maternal obesity and the skill of the sonographer.^4,5 In a study carried out in India by Singh et al,² the authors identified that out of 38 babies born with cleft whose mothers had undergone sonography, only 3 were detected during the scan leading the author to conclude that special efforts like improved training of sonographers, “routine visualization of the foetal face” among others, were necessary to detect cleft in the absence of any risk factors. Prenatal diagnosis gives parents time to adjust, enabling them to overcome the initial shock of the diagnosis and be better prepared to meet the needs of their child.

Cultural Context of Cleft

While not a major cause of mortality, CLP contributes to considerable disruptions within the family system.^6,7 Such disruptions could be influenced by the type of cleft,⁸ number of children, family income,⁹ social support, family values, and cultural issues.¹⁰ Additionally, poor understanding and awareness of CLP contributes to misperceptions about its causative factors with a common belief in many cultures that this is a curse from God, and that the birth of such a child means “bad luck.”^11,12 Such negative perceptions have been known to contribute to parents feeling guilty, depressed, ashamed, and stigmatized which in turn could interfere with the growth and development of the child.^13,14

Care and Treatment of Cleft

While early surgical intervention improves physical outcomes for the child, in the long term a multidisciplinary approach involving the combined efforts of pediatricians, speech pathologists, orthodontists, and cleft surgeons is critical.^1,15 In India, the interventions of non-government organizations like the Smile Train have significantly helped patients get access to treatment. Unfortunately, healthcare resources are not uniform across the country and public awareness about treatment for CLP is poor presenting major challenges in its management.^16–18 Thus, early diagnosis, ease of access to and delivery of holistic care, done in the context of an aware society, are the cornerstones on which rests the future and quality of life of parents and children with CLP.

Studies from India on parental reactions to and the challenges and difficulties they face in caring for their child with cleft are limited. Understanding these issues is key for healthcare professionals as it would enable them to work collaboratively with parents, thereby helping to reduce parental burden and improving quality of life for both parent and child. Hence, the aim of this study was to understand parents’ reactions to cleft, the manner in which they learned about its presence, and the challenges they faced in caring for their child with a view to providing healthcare professionals’ deeper insights toward enhancing care delivery.

Methods

Considering the aim of this research was to explore parental experiences, a qualitative design involving the grounded theory approach was considered to extract elaborate and complex views and behaviors. In using Grounded Theory (GT), we applied the approach proposed by Strauss and Corbin.^19,20 According to this, researchers remain true to the data while maintaining objectivity. The influence of the researchers on the research process is recognized and accepted as inevitable and the study is conducted in a systematic manner toward reducing potential researcher bias. The basic core principles of theoretical sampling, constant comparison, open and axial coding, and memo writing, intrinsic to all GT approaches, also guided the conduct of the study.^21,22

Setting

This cross-sectional qualitative study was conducted at the Sree Balaji Medical and Dental Colleges, Bharath Institute of Higher Education and Research, Chennai. It is a large tertiary care private hospital located in South Chennai, Tamil Nadu state, which is a busy commercial hub and caters to a wide patient demographic who come from within and outside the city.

Sampling and Recruitment

Parents of children under two years of age diagnosed with both cleft of lip (bilateral or unilateral) and palate who were attending the hospital on a routine appointment were eligible for inclusion. Using purposive sampling we selected study participants based on age and gender of the child, and the stage of treatment they were at. Only Tamil-speaking parents were included. As we progressed with data collection, we began applying the principles of theoretical sampling by which participants were recruited to help deepen our understanding of issues being described in the interviews. Thus, in this study, we learned that the education and socioeconomic background of the parents had a bearing on how they went about seeking information about CLP and the presence/absence of family support in turn influenced how they coped with caring for their child. Using theoretical sampling we then recruited parents belonging to different education levels and socioeconomic strata with the presence/absence of family support to explore these issues thereby seeking to fill gaps, clarify uncertainties, and test interpretations as the study progressed.

One of the authors (BT), a doctor at the outpatient department of the cleft hospital informed eligible parents about the study. Those who expressed willingness to participate in an interview were met by members of the research team and their consent was obtained. They were escorted to a private place in the hospital for an interview. The interviews were carried out predominantly with mothers. When the father of the child was present, we obtained consent to interview them. All interviews were audio recorded and conducted in a private space in the hospital premises

Data Collection

In-depth interviews were carried out by the study social scientist (SK) and psychologist (RM), with parents of children with CLP. Both are trained in qualitative research methodologies and have several years of research experience. They also had no prior experience working with this group and to that extent had little to no preconceived ideas about issues confronting parents in caring for their children with cleft. A study guide was developed based on our study aims and on feedback provided by cleft care providers. Additional questions were included based on issues arising as we progressed with data collection. Questions focused on parents’ understanding of CLP, how and when they learned about the presence of cleft in their child, issues concerning feeding and caring for their child, how they coped, reactions from family and friends on the birth of the child, nature of support received and their overall expectations from treatment. Each audio-recorded interview was transcribed verbatim. Members of the research team (SK, RM, TV, and BT) met often to discuss and reflect upon key issues arising from the interviews, compared and contrasted them with previous interviews, and wrote down memos highlighting these issues. This process of reflexivity, constant comparisons, and memoing continued throughout the data collection period.^21,22

Coding and Analysis

Once the audio-recorded interviews were transcribed and translated into English, they were loaded into NVivo for coding and analysis. The interview transcripts were divided up between SK and RM who individually carried out open coding. The process of open coding, characteristic of GT, enhanced familiarity with the data, and aided in the identification of patterns and concepts. Throughout this process the coders read the transcripts line by line and created semantic codes that best reflected what participants said, thereby moving inductively rather than deductively toward the identification of core categories. The codes independently created by the 2 coders were then merged and the merged data set was reviewed by examining the codes against their excerpts. Codes that were similar but worded differently were edited. In the next stage of analysis, axial coding was carried out through which the relationship between codes were examined thereby aiding in the categorization of the patterns identified. This was an iterative process and involved re-reading transcripts, examining each code, modifying/adding new codes, and reviewing memos to ensure that all nuances had been captured. In the final stage of analysis, we examined the relationships between categories to help construct an overall explanation of our data.

Rigor

A multidisciplinary team involving, orthodontists, a psychologist, and a social scientist were involved in the conduct of this study, each of whom brought their critical perspectives to the study. The use of GT with its emphasis on constant comparisons, reflexivity, and memoing meant that as a team we compared and contrasted issues arising from each of our interviews as a means to discovering commonalities and differences. The use of theoretical sampling where one interview in turn informed the next ensured that we were guided by issues arising from our data and not any preconceived ideas or theories. Through researcher triangulation whereby two members of the research team were engaged in data collection, with a third one (a content expert) providing overwatch, transparency in the execution of methods, in ensuring that relevant issues were probed and in following an open-ended method of inquiry was maintained. Furthermore, the anonymized interview transcripts were available for review by the whole team enhancing transparency. Meetings were held during the process of data collection and analysis to review and discuss emerging interpretations.

Ethics

Institutional Ethics Committee approval was obtained from Sree Balaji Medical and Dental Colleges, Bharath Institute of Higher Education and Research, Chennai (Ref No: SBDCH/IEC/06/2021/03). The principles of informed consent and voluntary participation governed the conduct of the study. Participants were provided all necessary information about the study and given the opportunity to withdraw or ask further questions prior to enrollment. Only those who gave consent were recruited. Information that could identify the participants were removed from the interview transcripts; the transcripts were only accessible to the research team. The Standards for Reporting Qualitative Research (SRQR) guidelines for reporting qualitative research were followed in writing this paper.²³

Results

Demographic Characteristics of Participants

Children with CLP ranged in age from one month to two years. Of the 11 children, 6 were females and 5 were males. Seven had older siblings, the remaining 4 were their parent’s first and only child. All parents who participated were literate. One mother had completed primary schooling, 5 had completed secondary schooling and 5 were graduates. Of the 7 fathers who participated, one had completed primary schooling, 2 secondary schooling, and 4 were graduates. Occupation of fathers included those engaged in casual labor, running small businesses, and working in companies, as blue/white collar workers. All mothers were homemakers. Barring two who reported living in a joint family, all others were in nuclear families. Fathers ranged in age from 25 to 42 years, mothers were between 22 and 39 years (Table 1).

Table 1. Demographic Characteristics of Participants.

ID No.	Parent interviewed	Interviewed separately or together	Age (years)	Education	Occupation	Age of child	Gender of child
01	Mother	—	30	Secondary school	Housewife	1 ½ years	Female
02	Mother	Together		Graduate	Housewife	5 months	Male
	Father			Graduate	Blue collar job
03	Mother	Separately		Secondary school	Housewife	2 years 10	Male
	Father			Primary school	Casual work	months
04	Mother	—		Secondary school	Housewife	1 year 2 months	Male
05	Mother	—	29	Graduate	Housewife	8 months	Male
06	Mother	Together		Secondary school	Housewife	6 years 4	Female
	Father			Secondary school		months
07	Father	—	30	Secondary school	Casual work	5 months	Female
08	Mother	—	35	Secondary school	Housewife	1 ½years	Female
09	Mother	Together		Graduate	Housewife	4 months	Female
	Father			Graduate	Small business
10	Mother	Separately	26	Graduate	Housewife	1 month	Female
	Father		30	Graduate	Small business
11	Mother	Separately	38	Graduate	Housewife	3 months	Male
	Father		42	Graduate	White collar job

Themes of Analyses

Our analysis resulted in the discovery of 5 core categories, namely, (i) learning about CLP—when and how, (ii) reactions and attributions to CLP, (iii) learning about and expectations from treatment, (iv) caring for a child with CLP, and (v) support systems.

Learning About CLP—When and How

All the mothers in our sample were registered with and had delivered in a hospital and consequently had undergone periodic antenatal check-up prior to the birth. Our analysis revealed a mixed picture with some mothers stating that their obstetrician-gynecologists (OBGs) had told them nothing about their child’s cleft at the time of their scans and others who indicated that their doctors had briefed them about the presence of CLP in their child and advised them on how they needed to proceed with the care of their child. Parents given such advice reported feeling better prepared and more confident to handle the care of their child.

Since we were aware of this condition before the baby’s birth, we were prepared… It would have been difficult if we did not know about this before the baby was born … now we feel confident that everything will be alright. (Mother—10)

Furthermore, the mother reported receiving referrals from her OBG on where she could go to seek treatment as a result of which she directly reported to a cleft speciality hospital within 10 days of the baby’s birth. Added to this, her OBG doctor’s encouraging words were reassuring and gave her and her family the confidence that their child’s cleft could be treated. A similar story was reported by a father whose wife’s OBG informed them during her eighth-month scan that the child’s, “lips appear abnormal” and that the severity of the cleft could be properly determined after birth. Assurances from OBGs that this was nothing to be concerned about and that a simple surgery would rectify matters was also reported. In another instance, a father said that community health workers attached to the local government hospital, having noted the child’s cleft regularly followed up with him on the child’s progress and treatment.

I received a call from the local hospital, they asked me where we were taking treatment, whether we had any issues … they said, “if you have any issues or need any help tell us, we will take care of it”. (Father—02)

In contrast, those who came to know of their child’s cleft only upon delivery reported feeling distressed and even angry at health professionals for not having forewarned them. One mother felt that perhaps the doctors concealed the fact of the child’s cleft and did not respond to their questions.

At the time of scan during my pregnancy if we had learnt about the baby then we could be mentally prepared… We would have searched where to go for treatment … we would have directly come here (refers to cleft hospital) and could have avoided going here and there. (Mother—01)

Another parent said that they were told to report to a cleft hospital and no other information on how they should care for their child in the interim was provided leaving them feeling worried and helpless.

They just said baby is like this so you just go to Ramachandra hospital (private tertiary care hospital in the outskirts of Chennai) and they will do surgery. They didn’t say anything about what and how to feed him, how to take care … it was very difficult times. (Mother—05)

Parents found it hard to understand why their OBGs failed to inform them about their child’s cleft following the scans taken at various stages during pregnancy. Reiterating the fact that she too came to know of her child’s cleft only after delivery, another mother said that a scan taken during the fifth month of her pregnancy had suggested an anomaly but she was unclear what it was. She believed that her baby “will have a mole on the lip or there will be a small patch” (Mother—02), raising concerns about how well parents understood what was communicated to them. The joy and anticipation usually accompanying the birth of a child was thus, disrupted leaving parents feeling disturbed and anxious for their child’s future.

Reactions and Attributions

Most parents in our study reported not having seen a case of CLP until after the birth of their baby. Some recalled reading about it when they were in school and of having seen video clips of such children but it was only after the birth of their baby did they really come to understand the problem. Given this, the child’s birth was accompanied by feelings of shock and sadness, and concerns about how to provide care,

It was shocking for me; my other two children are all healthy. “Why is this child affected like this”? I cried. I didn’t know that it would be like this. (Mother—05)

Describing that no one in her family had ever faced such a problem, 1 mother bemoaned the fact that while she had finally been blessed with a son after much prayer, the child’s “defects”—as she referred to it—had robbed her of all the joy and happiness. Her distress and depression were such that she could not even feed and care for her baby,

I wanted to have a baby boy so I prayed to the Gods … visited temples … God has given me this male child but why has he given me this defect … thinking this I was crying and was not feeding my baby for 2 days. (Mother—03)

Although initial reaction upon seeing the child was one of shock, mothers reported that they and their family came round to accepting the child and did not speak negatively about or even disengage themselves from caring for the child. One went on to say that her family members were particularly affectionate toward her child on account of her deformity. Mothers also appreciated their husbands who stood by them and gave them the strength and courage to deal with the situation.

My family members gave me courage and told me not to worry… I underwent a lot of stress during that period… As she (her child) has this problem she is even more affectionately taken care of and pampered in our family. (Mother—01)

A father reported that neither his nor his wife’s parents spoke negatively to them about their child; instead, they were reassuring and encouraging and urged them to seek appropriate care.

At home everyone felt happy because of the boy child. After seeing him struggle, everyone felt bad and would help me. (Father—05)

The belief that this was God’s will and therefore needed to be accepted as such was reported by 1 mother,

We just have to accept what God has given us and go on. (Mother—10)

However, reports of families expressing unhappiness at the birth of the child with CLP were also reported, albeit by very few parents in this sample. In 1 instance, a mother said that while her husband stood by her it was her father-in-law who chided her for having given birth to the child

My husband accepted my child, because of this he didn’t hate me or send m away … but my father-in-law was negative … he said baby is like this why did you give birth to this child. You should have aborted this child. (Mother—05)

In other narratives, parents described having to listen to family members questioning why the baby was born with such a deformity, what possible “mistakes” could have been committed, and why God had blessed them with such a child. Feeling at a loss themselves and unable to understand why this had happened to them parents felt all the more discomfited,

When my child was born whoever in my family came to see him asked why he was born like this? “What mistake has happened? why has God given you such a child? No one in the family has this defect then how come this baby is like this?”

…I myself don’t know the cause and reason then how could I answer them … I feel so bad. (Mother—03)

Thus, instances of negative reactions from family members experienced by parents though reported less, nevertheless, were a source of hurt and despair. Instances of negative reactions from civil society and the community at large in contrast were more reported. Parents spoke of feeling distressed when people stared at and gossiped about their baby or looked upon the child with pity. Often, they limited going out or isolated themselves avoiding contact with other people,

While taking my baby outside, others see her as something different. Just 2 days back I took her to a temple. Seeing her people were talking about her pointing their finger at her which made me feel uncomfortable… I immediately brought her back home. I decided that I should get this problem resolved and then only I should take her out. (Father—07)

Whoever sees our baby first say that the baby looks so cute but then they say he is affected by this … that time I feel very bad. So, after that I stopped going out … everyone looks at our baby differently. They look at him with pity. (Mother—05)

In this context, one mother reported that while her extended family living in her village knew about the fact that she had been delivered a baby girl they were unaware of the child’s deformity. She declared that she intended to keep it that way till such time her baby’s treatment was completed. Other parents attempted to present a “don’t care” attitude, but their narratives revealed otherwise,

We don’t care about what others are saying, but we don’t go to any functions, let the baby get cured first. (Mother—06)

One mother took comfort from the fact that at least her child’s condition was less disabling compared to some others she had seen and more importantly, could be treated.

Many children are handicapped worse than our child … if we feel upset and worried, how will those parents feel? I feel we can cure this, so I am ok. (Mother—08)

Parents grappled to comprehend why this had happened to them. Attributions were ascribed to exposure to the lunar eclipse and to a curse. In trying to make sense, parents began tracing their lineage to discover if anyone in their family had been born with CLP. Others were unsure, not knowing what to believe. One father at first attributed his child’s cleft to poor attention given by his wife to her health during her pregnancy. Later on in the interview, he also spoke of this being the result of a congenital problem but did not entirely rule out the popular belief that exposure to the lunar eclipse could have contributed to this anomaly.

At that time of eclipse, they said that she might have cut vegetables or cleaned fish … but I don’t know… I can’t say that what they are saying is wrong. It is something God has given us we can only pray to God that she will be cured. (Father—08)

In another case a mother believed that perhaps her child’s deformity was attributable to the fact that she had conceived rather late, at the age of 38 years, and had been under heavy medication as part of her treatment but, she remained unsure. Thus, reactions of shock, sadness and hurt at the birth of the baby predominated among parents accompanied by a sense of bewilderment as to the reason for the presence of the deformity. In the absence of any prior exposure to or understanding of CLP, culturally enshrined beliefs, usually with a negative tilt—that the baby was a curse, meant bad luck, vague allusions to “mistakes” having been made, etc—held sway among parents.

Learning about and Expectations from Treatment

Irrespective of whether parents had been informed about the presence of cleft in their child during pregnancy or following delivery, all of them had been provided referrals on where they could seek treatment upon the child’s birth. Here we noted varied approaches by parents which we classified as follows;

Those, who sought to understand what would be done to their child, which included sourcing the internet and watching online videos to learn more about CLP

When I asked about the operation, they said first they will put a stitch in front, on lips, after the blood level (haemoglobin) increases they will do the operation on lips and later inside the mouth for repairing the palate. (Mother 08)

I watched on YouTube a surgery showing how it was treated … I also talked to the doctor and he said that they would do a small surgery and the baby would be fine. “No problem”, he said. (Mother 02)

Some believed that there was no point in asking and learning more about CLP as it was beyond their scope of understanding, or the information was perceived as a burden as it only heightened their tension and stress,

They just said two surgeries needed to be done, I don’t know more, I have not asked. Even if I ask, I may not understand nor do I know anything about this. (Mother—07)

I don’t want to search for more information … if I see that I will get more afraid. If I try to know about it, things related to that will keep on running in my mind. (Mother—03)

And those, who had left it to doctor and God to heal their child,

…they will do operation and once they discharge, we go that’s it… It’s all personal trust… Everything they know. What do we know? (Father—03)

We don’t have a thought that anything will go wrong or it will happen like this or like that… God will not abandon us. (Mother—08)

While there were varied ways by which parents went about understanding and coming to terms with what their child would need to undergo, 1 factor that was consistently expressed by all was that following treatment their child should “look, feed and speak like a normal baby” (Mother—10). It was also evident that parents reposed trust in their doctors and expected nothing short of a complete return to normalcy for their child,

What I am expecting is that the operation should be a success. Success is more important for my child and for me … child should be cured. I don’t know anything else. (Mother—05)

A mother of a girl child was very concerned about her daughter’s appearance and was hopeful that there should be no visible signs of a scar on her lips after surgery and her speech too should be normal.

Main thing is her lip and then palate… This is a visible problem… I want her lips to get fixed well and she should speak well and look like us…. (Mother—01)

A father of a male child while hopeful of a good outcome for his son added that, parents should not get too disturbed even if things do not work out as anticipated,

If we fall down the stairs and sustain a cut, stitches may be needed, which may leave a scar… Just like that, our child was born with this problem and we should not feel badly about it. We came to the right place for treatment … if we did not know what to do or where to go, then we have reason to be afraid. (Father 02)

It was also evident from parent reports that treatment information concerning their child, provided by the doctors, both for the long and short term, was limited. The information that was forthcoming—delivered orally—appeared to be on a need-to-know basis. This paucity of information content combined with a deep-seated discomfort in seeking information from their doctors—particularly by poorer and less literate parents—left them with an unclear understanding of the long journey ahead.

I have no idea how many days this treatment would go on. I have not asked and they have not told me. After the operation, I have to come for review but I don’t know when that will be. (Father 07)

When all information is given then we won’t be so scared. (Mother 09)

Yes, I have concerns about how he will talk, how his teeth will look but I don’t ask them (refers to doctor). How can we ask the senior doctor? I am scared to ask about it?… Instead, I will ask others who have already done the operation whether teeth are okay, child is talking properly like that. (Mother—05)

The need for reassurance and support from their healthcare providers was also expressed,

I have many doubts and many things in my mind … if we have someone who could guide and support and tell me that “this is not an issue and baby will be cured once the operation is done and everything will be alright” … like that if there is someone to support me it will be very helpful. (Mother 05)

Caring for Child with CLP

For a parent, caring for a child with CLP presented major challenges. These included ensuring the child’s nutritional and health needs and regular follow-up visits to hospital which meant drawing from the family’s often meager resources to ensure that those health needs were met. Most parents learned to manage this over time but it exerted a toll on their emotional and physical health and on the family finances. The biggest challenge described by parents in caring for their newborn child was the child’s inability to suckle. Mothers described expressing their breast milk and feeding it to the child but this was often painful, proved insufficient, and could not be sustained for long. A variety of feeding methods were also described which included use of the Haberman’s bottle, a cup and spoon, etc.

Main difficulty is feeding milk. if I could feed my own milk her weight would have increased and operation would have happened fast … my child could not breastfeed, I also did not have much milk … even if I expressed not even one bowl of milk would come … doctor advised powder milk which I fed using a spoon … while feeding she does not drink fully and it comes out through her nose, that is very difficult to manage. (Mother—09)

Mothers also reported having to spend a lot of time feeding and caring for the baby and sometimes giving the child one feed would take anywhere between one to two hours.

It is very challenging to feed my baby. Unlike breastfeeding, we have to prepare the formula milk prior to feeding… We have to make the baby wait until the milk is being prepared, it is very difficult to manage … most of the time is spent in taking care of him as we have to frequently feed him. (Mother—11)

Feeling afraid and anxious when feeding their child was commonly reported as the process was fraught with risks. Fears of the child aspirating or choking while being fed were a constant source of worry for parents. A mother reported that her child had aspirated milk while breastfeeding and had to be admitted in the ICU for treatment of pneumonia. Describing the difficulties faced thereafter she said,

She will not drink milk she will not sleep … she will go on crying; we were unable to manage. We did not know why she was crying? she could not suckle so I had to pump and give the milk … that was very little and that too stopped … we had to give Lactogen. That too did not set easily for her, it took around 6 months for her to accept this. (Mother −01)

Mothers described having to take extra care to ensure that both liquid and solid foods were carefully fed to the child.

I am scared about giving him any food… It is too risky. (Mother—05)

Lastly, parents spoke about the costs involved in caring for their child. While grateful that the treatment was provided totally free of cost and for the fact that they had access to skilled doctors who were treating their child, there were other expenses that strained the family finances. Parents reported incurring considerable expenses to travel to the health facility for treatment and for follow-up visits as most lived-in far-flung areas or in villages and had to travel to the city to access care for their child. Furthermore, parents spoke about the stress of the long journey and exposure to dust and crowds which they felt put their vulnerable child at risk for infections. Fathers had to take off from work which often meant loss of pay,

My income is low but expenses are more, somehow, I manage because our child needs to get cured… Travelling expenses are major … buying diapers for the child … if he has fever, we need to get medicines… Tomorrow his future has to be good. So, whenever doctor asks us to come, I take leave even if it is at loss of pay. (Father—02)

Another mother felt guilty as she was unable to care for her older daughter who often accused her of spending all her time with her younger sibling.

My elder daughter says, “you are spending time with your son only”. That time I feel bad and it is very difficult for me… I tell her, “Once the operation is over for your brother, I will take care of you and will be there for you also”. (Mother—05)

We need to get that operation done on our child … then he will be good. That’s enough for us… Of course, it is very difficult because even one day that my husband doesn’t go for work, we cannot manage, but enough or not enough we have to manage with what we have. (Mother 05)

Despite the financial strain on them, all parents indicated that they had to manage and do the best they could as the future of the child was at stake. Ensuring that the child was fit to undergo surgery thus became a crucial goal that they each strived to achieve.

Support Systems

Reports of family members stepping in to manage the housework, feed, bathe, and care for the baby as well as other children/family members, were described by several study participants. Mothers spoke often of reassurances provided to them by their family as in this case where a mother said that her whole family was there to console and comfort her right through her pregnancy and even after delivery,

When I got the scan after the fifth month, we were in a dilemma whether to give birth or to abort. Because of my family and their support, I gave birth to him, I was crying often … almost each and everybody from my family and my in-laws were there … they took care of him well. (Mother—04)

In other instances, the role played by husbands, in helping with the care of their child and more importantly in standing by without casting blame or any negative aspersions was of great comfort to the mothers of these children. Parents spoke of finding strength in each other and of supporting each other.

I talk to my husband openly… I worry what will happen during the operation, will he suffer, what if anything happens? He consoles me and says “let’s pray to God he will do good for us, our child will get well soon, don’t worry”. (Mother 03)

Some parents described their older children helping in their own small ways. The positive reactions of friends, family, and others in the neighborhood after the child underwent surgery were also very rewarding. As described by a parent,

Seeing him after first surgery people started to say “wow it is good to see your son now he looks normal” when they said that I was extremely happy and thanked God … those who had earlier talked about my son’s appearance have now changed their opinions… I am happy. (Mother—03)

Instances of poor involvement and help rendered by family members in the care of the child with CLP or even with regard to assisting parents in caring for other children/family were reported by only one of our study participants. In this case, the lack of involvement was more because of a falling out and a long-standing grudge and not due to the child’s deformity per se.

Coming into contact with other parents of children with CLP was comforting to study participants as they realized that they were not alone. It gave them confidence that their child too would come through the treatment procedures successfully. This hope was strengthened when they visited the hospitals and saw children who had completed the treatment procedures with very visible improvements.

Only after coming here and seeing many other children in hospital who have similar problems, I am consoled… I thought only my son was affected like this … but there are many others like him. (Mother—03)

Not only was their confidence in the treatment procedures reinforced when they saw other children whose surgical procedures had been completed, the feeling that this cleft problem was not as serious as they had originally perceived began to take hold.

I thought that my child will have to face a lot of, “why are you like this, no other child has this”? After coming here, I saw children who have undergone operation, are in good health … now it doesn’t even show that they have gone through an operation. (Mother—09)

Furthermore, during their hospital visits, parents also got to see children who were worse off than their own child which gave them more confidence that their child would definitely become better.

For my child it is the single lip that is affected. But I have seen many cases where it is worse and also involved a lot of risk. I felt my child was better off… I feel confident that she will be alright. (Mother—11)

Thus, the ways in which parents received support from others, be they family or friends, tangible (material) or intangible (emotional), played an important role in building resilience to deal with problems. Additionally, the role played by other parents of children with CLP who too, were going through similar experiences, was of significance as they aided in overcoming feelings of isolation by providing an opportunity to share personal experiences. It also helped infuse confidence in parents that their child would fully recover.

Discussion

The present study highlights the need for better educative and emotional support for parents of children with CLP. This is in accordance with the existing evidence both from within and outside the country.^15,24,25 Additionally, our findings recommend, that this education begin as early as the prenatal stage to help prepare parents for the journey ahead; that structured information on CLP using both audio and visual aids be made available to all parents at the cleft care facility toward building confidence and capability to care for their child and that counseling support be provided to help them cope effectively with the rigors of caregiving.

Parents in our study expressed feelings of despair, shock, and grief at the birth of their cleft baby similar to reactions that have been reported in previous studies.^26,27 Prenatal diagnosis can be made possible through the anomaly scanning carried out during the 13th and 20th weeks of pregnancy. Unfortunately, the lack of infrastructure and the high volume of patients seen in public hospitals in this city, especially in rural and underserved areas could be argued as some of the reasons for missed opportunities for early diagnosis. Additionally, there is a shortage of specialized healthcare professionals like radiologists and specialist gynecologists/pediatricians who have the expertise to diagnose CLP accurately.^1,2 Evidence suggests that better training given to radiologists and gynecologists could help increase identification of CLP during pregnancy.² Poor awareness about the purpose of these scans among parents and families only compounded the problem. Clearly, this calls for improving hospital infrastructure and expanding awareness about diagnosis of CLP in the community.

Feeding difficulties associated with children with cleft has been reported as a major source of stress for parents in several studies.^28,29 Owens³⁰ stressed the importance of mothers having all necessary information and support that would equip them to decide how best to feed their child. In our study too, parents reported feeling stressed at having to spend long hours in feeding and caring for their child added to which fears of the child aspirating contributed to anxiety and fear. Robbins et al⁵ described the value of mothers receiving quality information on care of the baby including feeding issues from the pediatrician present during delivery. The UK NHS guidelines state³¹ that infants born with cleft need to first undergo a thorough feeding assessment by a specialist nurse before assisted feeding is introduced. Our study findings revealed that specific instructions to parents regarding care of the baby were mostly provided orally following the birth of the baby, raising concerns about the consistency of information provided as well as how it was understood by parents. Alternatively, a standardized patient information system incorporating pictorial posters/leaflets and videos on feeding techniques, nutrition, and other issues concerning the care of the baby could enable better absorption of information and empower parents to more effectively provide the care their child needs.

The emotional well-being of parents is essential to the continued well-being of a child with CLP. In our study, despite the fact that parents showed resilience in the manner in which they coped with the birth of their child, it was clear that this exerted a considerable toll on their mental and emotional health. Studies have underscored the need to undertake assessments of parental emotional well-being and for providing them with psychological support through the course of the child’s treatment as a means of better equipping them to handle stress and depression, thereby, enhancing care delivery to the infant.^24,32 A study carried out in the state of Uttar Pradesh in India revealed high levels of anxiety and depression experienced by parents caring for a child with CLP and recommended that counselors and even support groups be organized to aid the parents.³³ None of the parents in our study reported receiving or being advised or provided access to a counselor/psychologist at any point during the child’s treatment, a serious gap in the quality-of-care services that requires to be addressed.

A positive finding from our study was that most mothers reported receiving good support from their spouses and their families in taking care of their child with CLP and other family members. It is well acknowledged that having the support of family and friends helps reduce distress, enables parents to adjust better, and thereby provide better care to the child.³⁴ On the contrary, it is quite likely that negative reactions and rejections of baby and mother by family members may not be an uncommon feature, although, not observed among our participants. Studies of fathers expressing disappointment at the birth of a baby with CLP, blaming the mother for giving birth to such a child and rejecting them have been reported in Africa.³⁵ In view of such possibilities access to good counseling/psychological support will be critical to the well-being of mother and baby. Interactions with other parents of children with CLP also proved beneficial to parents in our study. Although this was not a formal support group and the interactions were of a casual nature, nevertheless parents felt reassured and encouraged. These interactions contributed to an enhanced understanding of CLP and the effectiveness of the treatment modalities. It infused in parents a sense of belonging and of the feeling that they were not alone.

Strengths and Limitations

The use of GT, a robust qualitative research approach, is a key strength of this study. Moving away from traditional top-down approaches which provide an objective view of a phenomenon, our study using GT explored the subjective experiences of parents of children with CLP enabling good insights. Additionally, periodic meetings by the research team to reflect and discuss the findings strengthened study rigor and minimized bias. In terms of limitations, we had recruited parents who presented to the cleft department and had access to treatment. There was no attempt made to approach parents who had no access to care or declined treatment for their child. Although this group is limited, their views were not reported. Given our country’s cultural diversity, further explorations involving participants from different parts of the country, could perhaps aid in strengthening our findings and enhancing transferability.

Conclusion

There is an urgent need to develop standardized information materials for patients to ensure that they have clear, consistent, and reliable information on care for their child with CLP. Additionally, the importance of strengthening care facilities and empowering parents through provision of psychological support are key findings that we believe have implications for future research.

Supplementary Material

Supplemental material for this article is available online.