Parental Experiences in Caring for Children with Surgically Treated Hydrocephalus: A Phenomenological Study from Eastern India

ABSTRACT

Background:

Congenital anomalies may be structural or functional and manifest at birth or be detected later in life. One such condition, hydrocephalus, is commonly managed with a Ventriculo-peritoneal (VP) shunt. As children grow with a shunt in situ, parents play a vital role in recognizing the symptoms of shunt malfunction and reporting for medical care. The possible complications are unpredictable and require a keen awareness of the associated symptoms and signs.

Materials and Methods:

A qualitative descriptive phenomenological design explored experiences of parents caring for children with VP shunts at a tertiary care teaching hospital and specialty follow-up clinic. Ten purposively selected participants underwent an in-depth, face-to-face, semi-structured interview that was audio-recorded and transcribed verbatim. The qualitative data were analyzed using the Modified Colaizzi method to extract themes, and NVivo-12 software was employed for systematic data organization and management.

Results:

The analysis generated four main themes from 22 subthemes, namely “Confound to comprehension,” “Inconsistent support system,” “Complexities of child care needs,” and “Parental challenges and accommodation,” which comprehensively elucidated the parental experiences of caring for a child with surgically managed hydrocephalus.

Conclusion:

Counseling service should be provided to the parents of children with surgically managed hydrocephalus by the physician and nurse about the disease, management, domiciliary care and follow-up. Emphasis must be placed on empowering them with coping strategies for common issues therein. Need specific, detailed education it be imparted to the parents while in the hospital and at discharge.

INTRODUCTION

Congenital malformations are structural or functional anomalies that manifest at birth or are detected later in life. Some of these may continue as chronic ailments that are stable or progress slowly and increase in severity over time.[1,2] Either way, there is a potential impact on the infant’s health and overall growth and development thereafter.[3] Hydrocephalus, an abnormal accumulation of cerebrospinal fluid in the ventricular system of the brain, is one such congenital anomaly.[4] The global incidence of hydrocephalus is 1.1 in 1000 infants; it is higher in low- and middle-income countries than in high-income countries.[5] The incidence of hydrocephalus in India is approximately 0.2–0.5/1000 live births.[6]

The most common treatment for hydrocephalus is a ventriculo-peritoneal (VP) shunt.[7] Two major groups of complications affect such systems: mechanical issues and shunt infections. The former includes obstruction, fractures and slippages with growth of the child, while the more serious infective complications range from localized infections to sepsis/ventriculitis.[8] A retrospective study from Iran for 10 years found the commonest shunt complications to be shunt obstruction (60%) and shunt infection (25.3%).[9] Whatever the cause, the failure rate of shunt ranges from 20% to 40% in the first year after implantation.[5] Parents play an important role in the timely recognition of warning symptoms of shunt malfunction and early reporting to a medical facility to avoid severe complications, permanent neurological impairment, or demise.[10]

A drastic change can be seen in a family after the diagnosis. This may cause serious family stress, changes in the family structure, labor loss, and related difficulty. The siblings of children with chronic diseases are also affected psychologically.[11,12] Hence, it is important to explore the parental experiences while providing for the physical, psychological, developmental, and social needs of the children. This could help the health care providers to plan strategies to prevent potential complications, neurological morbidity and mortality.

MATERIALS AND METHODS

This phenomenological study aimed to explore and describe the lived experiences of parents caring for children with surgically managed hydrocephalus and to understand the meaning they attribute to caregiving.

A qualitative study using a transcendental descriptive phenomenological design was conducted among parents of children attending the Hydrocephalus Spina Bifida Clinic of a tertiary care center in an eastern Indian state. Parents with at least 1 month of follow-up who were conversant in English or regional languages were included. Those unwilling to participate or whose children had other congenital anomalies were excluded [Table 1].

Table 1.

Profile of parents and children with Ventriculo-peritoneal shunt

Study parameter	Number
Parental profile
Parent	n=16
Mother	2
Father	2
Both	6
Father’s age (years)	n=8
31–40	6
41–50	1
>50	1
Father’s educational qualification	n=8
Primary school	2
Secondary school	3
Higher secondary	2
Graduate	1
Mother’s age (years)	n=8
18–30	5
31–40	2
41–50	1
Educational qualification of mother	n=8
Primary school	3
Higher secondary	3
Graduate	2
Number of other children	n=10
0	6
1	3
More than 1	3
Monthly income (Indian rupees)	n=10
<10,000	1
More than 10,000	9
Religion	n=10
Hindu	9
Muslim	1
Place of residence	n=10
Urban	3
Rural	7
Child’s profile	n=10
Age (years)
<1	3
1–2	1
>2–5	5
>5	1
Gender
Male	4
Female	6
Birth order
First	5
Second	4
>2	1
Age at diagnosis
Prenatal	2
At birth	1
Infancy	7
Final diagnosis
Aqueductal stenosis – hydrocephalus	5
Spina bifida-hydrocephalus	2
Postmeningitic hydrocephalus	3
Duration of VP shunt placement
6–12 months	3
>1 year	7
Number of shunt revisions
Once	2
Twice	1
More than twice	3
No shunt revision	4
Number of shunt infections
Once	2
Twice	2
More than twice	2
No shunt infections	4
Outcome
Alive and well, on fu	10
Demise	0

VP: Ventriculo-peritoneal

Written informed consent was obtained after explaining the study purpose and confidentiality. The interview was audio-recorded. Bracketing minimized the researcher’s bias. Data were collected through a validated, semi-structured, in-depth, face-to-face, ten private interviews with sixteen parents until data saturation, each interview lasting for 40–60 min [Figure 1].

Figure 1.

Proforma and interview guide

Interviews were audio recorded, transcribed verbatim, translated in english, and coded line by line to generate initial and focused codes. Analysis followed Modified Colaizzi’s method using NVivo-12 (QSR International, Lumivero, Melbourne, Victoria, Australia), and subthemes were synthesized into overarching themes. Prior ethical approval was obtained from the Institutional Ethics Committee with reference number: IEC/AIIMS- BBSR / Nursing/2021‐22/10.

RESULTS

The analysis yielded 563 initial and 146 focused codes. Twenty-two subthemes were identified and synthesized into four overarching themes reflecting parental lived experiences. The framework of themes and subthemes is depicted in Table 2 and is briefly presented.

Table 2.

Themes and subthemes

Confound to comprehension	Inconsistent support system	Complexities of child care needs	Parental challenges
Unapprised pathology	Family support	Growth and development	Physical experience
Grief response	Societal support	Education	Emotional experience
Apprehension	Support shortage	Shunt complications and prevention	Societal experience
Uncertainty		Healthcare facilities and follow-up	Spiritual experience
Reassurance		Uncertain future	Financial experience
Satisfaction			Parental differences
			Parental life adjustments
			Parental care

Confound to comprehension

The first theme, “Confound to comprehension,” had six sub-themes. The term “confound” implies confusion, while “comprehension” means the ability to understand. This theme explains the parental journey from not knowing about their child’s diagnosis to the point when they understood the condition.

Unapprised pathology

Parents stated that they had no idea about hydrocephalus until their child was affected. Some could discern the abnormality soon after birth and sought medical help. Several others were antenatally detected, yet delayed/neglected in providing care due to a lack of awareness about the disease and health care facilities.

“I could differentiate the signs by the 3^rd month when the head started growing. Children have a hollow type and pulsatile type…but my child’s head seemed like a water pouch…” (Mother, family 6).

Grief response

When parents got to know about their child’s diagnosis, they were very concerned. One father felt like he did not exist in the world anymore, while another felt as if the world had collapsed. The child’s condition created tension between the parents; they were shocked, worried, and ready to do whatever possible to save their child.

“The owner of the CT scan center is known to me, he told me that he couldn’t see any brain…We were tensed thinking about what was happening to our small child…” (Father, family 9).

Apprehension

Parents went through many emotions at the initial stage of disease detection. During the preoperative hospital stays, postoperative period, and subsequent home care, they were fearful, anxious and vigilant to keep the child protected from injuries and complications.

“Doctor told me that the head would be opened and water removed, I wondered how the child would survive after a head opening?… I thought of discontinuing the treatment and going home…” (Father, family 4).

Uncertainty

Uncertainty was a constant part of daily life and dramatically impacted the lives of the parents. The uncertainty of the child’s survival, the emergent nature of the management, variable treatment success, complications, and the future were significant causes of distress.

“In NICU, the doctor said-after delivery of the baby, we will be able to know the actual condition; now we can’t predict what complications will be there or what the head size will be” (Mother, family 2).

Reassurance

The parents were comforted and became confident with time. Most expressed that they were repeatedly consoled psychologically and emotionally about the child’s status by the health care staff, family members, relatives, and friends. They also stated how they were counselled by the healthcare professionals to care for their child.

“One gynaecologist greatly encouraged us, she told us that the consultant treating our child was good and our child should improve, how she will function, and so on …” (Mother, family 2).

Satisfaction

Parents were satisfied with the healthcare facility, the child’s current condition, and overall improvement with age. They were relieved during the uneventful periods without any postoperative complications between periods of illness, especially long periods without any infection or blockage.

“We saw that our child was functioning as usual. The head was big, but the child was generally well, hence we were happy” (Mother, family 2).

Inconsistent support system

The second theme had three subthemes. It depicts the parents’ additional support or strength while dealing with their sick child. Some of the parents said that they had a sound support system, but few expressed a lack of it.

Family support

The parents stated that they were supported by their spouses, in-laws, and family members emotionally, physically, and financially. Most of the mothers said that the mother-in-law was very helpful in managing household work and caring for the baby. Parents expressed that their spouses have helped through this difficult time by being emotionally supportive, providing financial help and sharing household chores. A few parents added that their relatives had helped them during the hospital stay and in the absence of a family member.

“Yes, when my husband was away, my mother-in-law helped me with everything. During surgery and thereafter at home, she was my main support and helped me to care for my son. We shared the household work. and took turns watching over the child” (Mother, family 6).

Societal support

Most of the parents said that they had good social support from friends, both financially and emotionally. Social support was a tremendous strength for the parents, without which it would have been challenging for the family to carry on with day-to-day life and fight against the stigma related to the child and survival.

“Everyone, including the children in my village, supported me and reassured me that nothing would go amiss and not to fear. God would help, and my child would survive and live his life” (Mother. family 1).

Lack of support

Likewise, a few parents expressed that they did not have a proper support system and felt abandoned. They did not have family, friends, or anyone to help during their hospital stay, making life difficult. A few mothers mentioned they had no support from their in-laws or their parents. The lack of a support system pushed the parents into challenging situations.

“No, I don’t have any kind of support, we are not on good terms with my family members, they never helped with anything. So, I left our village and started staying here on rent for the child’s sake” (Father, family).

Complexities of child care needs

The theme “Complexities of child care needs” has evolved from five subthemes and elaborates on the child’s condition and the care needs that are sometimes met and at other times neglected. The parental views and challenges in providing for these are varied and are discussed under this theme.

Growth and development

Parents reported that their child’s developmental milestones were being tracked by the physicians. They understood that their child would have a relatively slow or late achievement of milestones compared to normal children. Nevertheless, parents were happy to see their children achieving the milestones.

“He is eating everything with his hands; he eats biscuits from the box. I am glad that he could do this on his own” (Mother, family 1).

Educational needs

Education and schooling are significant parts of a child’s developmental needs, and parents have a lot of mixed thoughts regarding them. Some parents said that education was essential and hoped that their child would be educated and stand up in society, but they were concerned about how it could materialize given the chronicity and uncertainty of the disease.

“Um… he hasn’t gone to school yet, but… now he is already 4 years old now and has to join. I am afraid… if he goes to school, I have to speak with the Principal about his condition” (Mother, family 6).

Shunt complications and prevention

Parents expressed fear, anxiety, and concerns regarding shunt complications. They were worried about repeated shunt infections, shunt blockage, continuous fever, intellectual impairment, seizures, lower limb deficits, bowel and urine incontinence, delay in developmental milestones and weight loss. The uncertain nature of disease, complications and the possibility of repeated surgery were the primary concerns.

“She (child) can write…but is not able to process… she can recall and relate the old events … but, doesn’t remember new things there, she is forgetting…she can’t remember the recently learned things. Before the surgery, she could recall 15–20 rhymes… but now she is unable to … (mother cries)” (Mother, family 9).

Health care facility and follow-up

Parents experienced challenges in accessing emergency health care facilities. Some could not access a facility at all, while others struggled to reach skilled pediatric health professionals before approaching the current facility. They were satisfied with some of the doctors, nurses, and hospital staff in particular hospitals, and expressed how they developed awareness and familiarity with the system to care and follow up optimally.

“Doctor said that the child’s condition was getting worse … since that was a government hospital without proper facilities for our child’s treatment… we were asked to shift the child for treatment elsewhere.” (Father, family 5).

Suspense of the future

Almost every parent was stressed regarding the uncertainties in the child’s future, especially about education, dependency, disability, shunt complications (infection, blockage), and image. They were worried about their own health needs, future pregnancy and caring for other children.

“I saw the depressions on the head and wondered when they will get filled. When will the eyes look normal? Perhaps not immediately” (Father, family 4).

Parental challenges and accommodation

This theme had eight subthemes where parents expressed the challenges faced in various facets of their daily life while caring for the child. They talked about their situational demands and how they accommodated.

Physical experience

While caring for children with a VP shunt, parents had many difficulties. The child’s dependency was demanding and even disturbed their self-care, eating, drinking, and rest. As the child was the priority, parents almost forgot about themselves and neglected their own needs.

“Eating and drinking were not regular.… running around for documents, reports, tests and procedures.” (Father, family 2).

Emotional experience

The parents went through massive emotional breakdowns and voiced profuse sorrow linked to the child’s condition and situational changes. They expressed their hurt and blamed destiny while stressed. Fear was the universal emotional experience consequent to that life-changing event in their child. Their emotions differed during preoperative, intraoperative, and postoperative periods-in and out of the hospital.

“Feelings of sorrow persist from the beginning. Our child won’t be able to walk ever…, how we will take care … we are saddened” (Mother, family 7).

Societal experience

Parents had expressed both pleasant and unpleasant social experiences some had blind beliefs/misconceptions, while several others showed sympathy and love toward the parents and children in the course of the disease.

“Yes… people have said hurtful things many times… that because of parents’ mistakes and sins, children get these diseases… blind belief. Someone said. when children are born… they massage with hot oil, since we didn’t do that, water got accumulated in the head and led to the disease” (Mother, family 6).

Spiritual experience

Almost all the parents seemed spiritually inclined and surrendered themselves to God in accepting their child’s condition, trust and belief in God strengthening them during the emotional turmoil. Praying and fasting for the child’s well-being was common.

“Whatever is there in our fate will happen, we trusted God. Doctor also is a God. we trusted God and the doctor” (Father. Family 2).

Financial experience

Almost every parent belonged to the lower-middle-class and faced financial issues. Most took loans, were in debt and had a lurking fear of not having ready finance at hand. Few were below the poverty line cardholders, and daily sustenance was hard.

“When the child got an infection, I panicked …anything could happen, immediately I borrowed money, Rs. 2000–4000, by phone pay, brought him and admitted” (Father, family 5).

Parental differences

Some of the parents had individual differences when it came to their child. A father with a single kidney considered the child to be a burden, worthless, and a problem for the future. However, his wife was very positive and confident about her child’s recovery. Few of the fathers lamented that they were getting relatively less time than their wives to spend with the child due to their job/other responsibilities. However, both parents expressed love and attachment for the sick child over time.

“I knew this child was of no use because the other doctor had told us so. If so, we can throw that thing away… I tell his mother the same. I didn’t want him; I am a kidney patient myself with my left kidney removed…. managing all these is a burden” (Father, family 5).

Parental life adjustment

Due to the child’s illness and dependency, parental routine had changed to be accommodating with several compromises in parental life, including not attending festivities, loss of pay, workplace disturbances, routine modifications, and neglect of other children.

“Yes, our routine has changed, I am late for work. to take care of the child, his mother wakes up early, So, we had to manage the time” (Father, family 10).

Parenting and caring

The care of the child with VP shunt was challenging and needed continuous caution and maintenance of a suitable environment to prevent infections and complications. The parents were seized with ensuring hygiene and practicing asepsis. Parents were willing to do whatever it took to help their child lead a healthy life and voiced their fears and their plans.

“To protect from infection, there was a separate environment for her… nobody went near her or touch her linen/towel, everything was cleaned with sanitizer. mosquito net was constantly used” (Father, family 5).

DISCUSSION

The present study revealed that the foremost challenge faced by parents was inadequate knowledge about hydrocephalus at the time of diagnosis, which led to confusion, fear, and uncertainty. Limited access to appropriate healthcare facilities and a lack of expert professional guidance further intensified their distress during the early stages of diagnosis and intervention. Similar findings were reported by Kruk et al. who noted that poor quality and inadequate healthcare services in low-and middle-income countries hindered timely and effective management. They quote a survey conducted by the International Institute of Population Sciences from 2012 to 2014 in 21 Indian states; it documents that the Indian health system lacks adequate infrastructure and is marred by nonavailability of doctors, health workers, and drugs, poor quality care, inconvenient hours, prolonged waiting hours, and lack of trust in health care facilities.[13] Despite these systemic challenges, parents in the current study expressed appreciation for the continuous encouragement and emotional support provided by healthcare team members during hospital visits and follow-up care.[14] As they adapted to their child’s condition, parents transitioned from feelings of shock and helplessness to developing confidence and resilience in managing home care.[15] This highlights the crucial role of supportive communication, education, and empathetic engagement in improving parental coping and overall care outcomes.

The present study found that having a child with surgically managed hydrocephalus was overwhelming and stressful for parents. A strong support system serves as an essential anchor in coping with the challenges of caregiving. Most of the parents expressed satisfaction with the support they received from family, friends, relatives, and society. Likewise, Boyden et al., have reported that higher perceived social support is significantly associated with lower anxiety levels among parents of children with serious illnesses.[16]

Parents faced multiple challenges in meeting the needs of their children. The complex nature of hydrocephalus affected nearly every aspect of the child’s life and made it strenuous for caregiver parents, frequently disrupting family routines. Golics et al. reported that chronic diseases impact families emotionally, financially, socially, particularly work, education, and leisure.[17] The growth and development of these children were often delayed or inappropriate.[18,19] Parents were anxious about postsurgical issues, possible shunt complications and the impact on the child’s future.

Despite sweeping changes in routines in sleep, mealtime and social activities,[20,21] parents were willing to go to great lengths to care for the child and ensure survival and a near-normal life. They kept a constant vigil to pick up disturbances in the child’s health, and the fear of shunt block/infection loomed large all along. A study conducted by Verberne et al. on the aims and tasks of parents for children with life-limiting diseases found that parents had various aims in caring for their children, being good parents by controlling and managing the symptoms and disease, giving a life worth living, and balancing the family needs.[22]

This study had certain limitations. Although the national institute served as a regional referral center, the sample included only 10 parents from a single tertiary care center in a coastal eastern Indian state and its adjoining regions. The small sample size and single-center setting may limit the generalization of the findings. Future studies involving larger and more diverse populations across multiple centers are recommended to enhance broader applicability.

Despite these limitations, the study’s strength lies in its in-depth exploration of parental lived experiences in caring for children with surgically managed hydrocephalus in a specialized clinical setting. The qualitative approach enabled rich, detailed data generation. Given the limited number of such specialty clinics in India, the findings provide valuable, context-specific insights. Research rigor was maintained through continuous peer review and reflexive journaling.

The study highlights important implications for nurses, surgeons and pediatric neurosurgery teams. Structured parental counseling should be provided by the health care team at diagnosis, during the perioperative period, and throughout follow-up, focusing on disease understanding, treatment, domiciliary care, and scheduled reviews. Multidisciplinary clinics can enhance coordinated care with emphasis on strengthening parental coping strategies. Parents should receive specific, detailed education during hospitalization and at discharge, including written instructions and clear emergency warning signs.

Conflicts of interest

There are no conflicts of interest.

Funding Statement

Nil.