Effectiveness of Structured Teaching Program on Knowledge Regarding Home Care Management of Children with Hydrocephalus and Shunt among their Parents

Abstract

Background:

Parents of children with hydrocephalus play a crucial role in recognizing the early signs of shunt-related complications and to prevent morbidity and mortality.

Aim:

To evaluate the effectiveness of an educational intervention among the parents of children with hydrocephalus and shunt.

Materials and Methods:

Quantitative, quasi-experimental one group pretest–posttest design was used for the study. Twenty parents of children (<5 years) with ventricular shunt were selected by non-probability convenience sampling technique from pediatric neurosurgery outpatient department of tertiary care hospital, Kerala, India. Tool 1 was used to assess the demographic and clinical variables of the sample and the child and tool 2 was the structured knowledge questionnaire on home care management of children with hydrocephalus and shunt.

Results:

The difference in the mean pretest–posttest knowledge score was statistically significant at P < 0.01. There was a significant association between the mean knowledge score of the sample and the age of the mother, the age of the mother at pregnancy, and the previous knowledge from various sources.

Conclusion:

The study revealed that the parent-centered education was effective in improving the knowledge of parents regarding care of children with hydrocephalus and shunt. It helps them to extend the care of these children from hospital to home and hence improve their quality of life.

Introduction

Hydrocephalous, also known as “water on the brain,” is a medical condition in which there is an abnormal accumulation of cerebrospinal fluid in the ventricles of brain. It is one of the most commonly diagnosed neurosurgical problems in childhood, occurring in nearly one-third of all congenital malformations of nervous system. It could be as a result of serious neurological problems that is present prenatally or acquired postnatally.[1] The World Health Organization indicates that one in every 2000 births results in hydrocephalus.[2] According to the Hydrocephalus Foundation, Massachusetts, US, hydrocephalus is fairly common in children and accounts for approximately 1.5 per 1000 live births.[3] In India, the incidence of congenital hydrocephalus is approximately 0.2–0.5/1000 live births.[4]

Shunt insertion has dramatically reduced the morbidity and mortality of hydrocephalus but it is associated with potential complications, including shunt infection, malfunction, and obstruction, and may need multiple surgical procedures during the life span of a shunted individual.[5,6] Ventriculosubgaleal shunts have been earlier demonstrated to be useful in a variety of circumstances.[7] However, with the development and refinement of modern shunts, near-normal learning and intelligence is now possible and children are able to enjoy full participation in all facets of their life.[8]

Ann and Freeman (1992)[9] conducted a quasi-experimental study at Le Bonheur Children’s Medical Center, to observe the effect of nursing education intervention on parents’ knowledge on hydrocephalus and shunts. A total of 41 parents were divided into two groups (A and B): Group A includes parents of children who received an initial shunt and Group B includes those admitted for shunt revision. The mean knowledge difference for Group A was 0.52 and for Group B, it was 0.375. Although a significant change was observed in the scores from the pre- and posttests (P = 0.092) for Group A, no change was noticed in Group B.

On reviewing the literature, it was also found that many problems related to physical (shunt-related complications, seizure, gait disorders, vision, and developmental delays), emotional (depression), and social domains are faced by children with hydrocephalus and shunt.[8] With adequate education and experience, they can ultimately contribute to the care. The involvement of parents in decision-making adds to their confidence and satisfaction. Hence, the parents need to be educated and empowered with information so that they can play a key role in the prevention of complications and mortality. Even though nursing literatures contain numerous examples of positive patient and family education, to reduce the length of hospital stays and improvement of quality of life, necessary studies have not been conducted to improve the care of children with hydrocephalus and the reduction of their morbidity.

Materials and Methods

Design, sample, and setting

A quantitative, quasi-experimental one group pretest–posttest design was used. The sample consisted of parents whose children (<5 years) underwent shunt surgery, attending pediatric neurosurgery outpatient department of a tertiary care hospital in Kerala, India. Non-probability convenience sampling technique was used for sample selection.

The sample selection criteria include the following:

• Inclusion criteria

  • Parents of children with hydrocephalus and shunt

  • Parents of children up to 5 years

  • Parents of children who were available during the time of the study

• 2.Exclusion criteria

  • Parents who were health professionals

  • Parents of children with hydrocephalus who have undergone endoscopic procedures or have shunt inserted at sites other than peritoneum or subgaleal space

Data collection instrument and procedure

The tool for data collection was a structured questionnaire. It includes the following:

1. Tool 1 assesses the demographic profile and clinical variable of the sample (parent) and the child; Section A: Demographic profile of the parent, Section B: Demographic and clinical profile of the child.

2. Tool 2 is a structured questionnaire on home care management of children with hydrocephalus shunt (30 items) with six items each in the following areas: basic information, hydrocephalus and its clinical manifestations, management of hydrocephalus, complications, and life with shunt. Level of knowledge score was categorized as good: 21–30, average: 11–20, and poor below 10. The content validity index was 0.9 and reliability of the tool was determined by split half technique, obtained as r = 0.75.

The data were collected after obtaining ethical approval from the Thesis Review Committee and informed consents from the parents. A pretest was carried out (day 1) and on the same day, the teaching-cum-discussion for 45min was administered on one-to-one approach. The educational intervention involves the following: an overview of brain and fluid system; hydrocephalus: its meaning, causes, manifestation according to age, identification of early signs (increased intracranial pressure), its management, and complication of shunt surgery; and preoperative and postoperative home care including surgical incision of child with shunt and life with shunt. The posttest knowledge assessment of the parents was carried out on day 15 by using the same questionnaire.

Results

To analyze the data obtained, we used descriptive and inferential statistics. The demographic data related to the sample and children were described by using frequency and percentage. Pretest and posttest scores on knowledge regarding care of children were calculated by mean and standard deviation. The significance of the difference between pretest and posttest knowledge score was determined with the help of paired t-test. One-way analysis of variance and independent t-test were used to test the association between knowledge score with demographic profile and clinical variable.

Description of sample characteristics: Table 1 presented the selected demographic profile and clinical variables related to the sample. Approximately seven (35%) fathers were in the age group of 30–35 years, seven (35%) mothers were in the age group of 20–25 and 25–30 years. A total of 19 (98%) mothers were unemployed. All the mothers had undergone regular antenatal checkups, taken iron and folic acid supplements after detection of pregnancy, and two doses of tetanus toxoid (TT) prenatally. None of the mothers were exposed to chemicals or radiation during pregnancy. Hydrocephalus was identified among seven (35%) during the third trimester and two (10%) mothers had infection (toxoplasmosis and urinary tract infection). Three (15%) mothers had elevated levels of blood pressure prenatally and were on medication. A total of 12 (60%) mothers had undergone cesarean section, seven (35%) normal delivery, and one (5%) vacuum evacuation.

Table 1.

Distribution of sample based on demographic profile and clinical variables – Parent Data (n = 20)

Sample characteristics	Frequency (f)	Percentage (%)
Age of father in years
25–30	6	30
30–35	7	35
35–40	5	25
>40	2	10
Age of mother in years
20–25	7	35
25–30	7	35
30–35	6	30
Employment status of the parent
Father: employed	20	100
Mother: employed	1	05
Unemployed	19	98
Occupation of the father:
Private sector	11	55
Self-employed	9	45
Annual income of the family:
Above ₹ 250,001	2	10
250,000–100,001	8	40
100,000–20,001	9	45
Below ₹ 20,000	1	5
Consanguineous marriage
Yes	1	5
No	19	95
Mother had taken regular checkup during pregnancy	20	100
Hydrocephalus was identified during pregnancy
Yes	7	35
No	13	65
Significant events in prenatal period
Taken immunization (injection TT [2 doses]), Yes	20	100
Taken iron and folic acid supplements, Yes	20	100
Blood pressure	1	5
Low
Normal	16	80
Elevated	3	15
Infections during pregnancy
Yes	2	10
No	18	90
Mode of delivery
Normal delivery	7	35
Cesarean delivery	12	60
Vacuum evacuation	1	5

Table 2 presented the demographic profile and clinical variable of the child. A total of 8 (40%) were in the preschooler category, 13 (65%) of the children were boys and 7 (35%) were girls, besides, 2 (10%) had birth weight from 1 to 1.5kg. Totally, 19 (95%) of the babies had neonatal intensive care unit (NICU) admission for various reasons; 18 (90%) had shunt inserted in abdomen and 2 (10%) in subgaleal space.

Table 2.

Distribution of the characteristics of child based on demographic profile and clinical variable – Child Data (n = 20)

Characteristics related to child	Frequency (f)	Percentage (%)
Age of the child in years
<1	7	35
1–3 years	5	25
3–5 years	8	40
Gender
Male	13	65
Female	7	35
Birth weight of the child (kg)
1–1.5	2	10
1.5–2.5	8	40
2.5–3.5	8	40
>3.5	2	10
NICU admissions
Yes	19	95
No	1	5
If yes, the reason for admission was
Observation	1	5.26
Low birth weight	10	52.63
Bleeding inside the brain	5	26.31
Infections	1	5.26
Others	16	82.21
Baby is taken care of by
Father	1	5
Mother	15	75
Both	2	10
Others	2	10
The shunt is inserted in
Abdomen	18	90
Subgaleal space	2	10
Child has undergone any shunt revision
Yes	13	65
No	7	35
Head circumference of the child at birth
Normal	12	60
Increased	8	40
Stage at which first shunt insertion was done
Neonate	3	15
Infant	15	75
Toddler	1	5
Preschooler	1	5
Type of shunt valve used for the child
Chabbra medium pressure valve	11	55
Programmable shunt valve	7	35
No valve	2	10
The cause of hydrocephalus
Posthemorrhagic hydrocephalous	6	25
Aqueductal stenosis	4	16.6
Post infection hydrocephalous	3	12.5
Chiari malformation	3	12.5
Meningomyelocele	3	12.5
Brain tumor	2	8.3
Occipital encephalocoele	2	8.3
Dandy walker cyst	1	4.1
Any comorbidities
Yes	13	65
No	7	35

A total of 8 (40%) babies had increased head circumference, 15 (75%) had undergone first time shunt insertion during infancy. Two (10%) of them had more than five shunt revisions in a year. Of all the shunts inserted, 11 (55%) of them used fixed pressure valve. Posthemorrhagic hydrocephalus was the main cause among six (25%) of the babies. Majority of the children, that is, 14 (70%) had comorbidities.Figure 1 indicates that nine (45%) of the samples were interested to know the whole aspects of hydrocephalus and only two (10%) of the samples were interested to know the cause of hydrocephalus and how to recognize complications.

Figure 1.

Bar diagram on specific areas of clarifications needed for the sample

Table 3 presented the mean pretest and posttest knowledge for each component. The mean difference in the knowledge score was significant for life with shunt, at the P < 0.001. Figure 2 shows the difference in the knowledge scores of the samples in the pretest and posttest with the administration of a structured teaching program. Most of the caregivers, 15 (75%) had average knowledge regarding home care management before the conduct of the structured teaching program. The administration of the structured teaching program showed a considerable increase in knowledge level; 19 (95%) parents acquired good knowledge.

Table 3.

Comparison of mean pre-test and post test score of each components of knowledge (n = 20)

Components of knowledge	Mean		Mean difference	t Value	df
	Pretest	Posttest
Basic information	3.30	5.00	1.700	5.101**	19
Clinical manifestation	3.85	5.20	1.350	4.613**
Management	3.55	5.00	1.450	4.417**
Complication	3.35	4.55	1.500	4.459**
Life with shunt	2.60	4.60	2.000	7.958**

**P < 0.001

t₍₁₉₎ = 3.883

Figure 2.

Bar diagram on pretest and posttest knowledge on the care of children with hydrocephalus and shunt

Table 4 indicated that overall mean pretest knowledge score was 16.65 and the mean posttest score was 24.65, which were significant at the level of P < 0.001.

Table 4.

Comparison of overall mean pre-test and post test knowledge score (n = 20)

Knowledge score	Mean	Standard deviation	Mean difference	t Value	df
Pretest	16.65	3.911	8	11.196	19*
Posttest	24.65	2.681

*P < 0.001

t₍₁₉₎ = 3.883

16.65 Over all mean score of pre test of samples

Discussion

The objective of the study was to evaluate the effectiveness of structured teaching program on knowledge regarding home care management of children with hydrocephalus and shunt among their parents. The study used paired t-test, t = 11.196 (P < 0.001) revealed a statistically significant difference in the mean pretest (16.65) and posttest knowledge score (24.65) of the subjects. Thus, education was effective in acquiring knowledge. Findings of the study were congruent with the study conducted by Ann and Freeman[9] on the effect of a nursing education intervention in creating awareness about hydrocephalus and shunts. They used a knowledge questionnaire with seven multiple choice questions for the purpose of the survey. Group A had a significant change in its score from pretest (0.52) to posttest score (0.375) for Group A (P = 0.0092). However, parents in Group B had no significant change in pre- to posttest score, which may perhaps be due to inadequate number of items in knowledge assessment tool.[9] Although, in the present study, the knowledge assessment tool contained 30 items, it was sufficient to evaluate the knowledge of parents with an experience of shunt revision of their child.

On association of knowledge regarding home care management of children with hydrocephalus and shunt among their parents and selected variables, this study had a significant association with the age of the mother, age of the mother at pregnancy, and previous knowledge from various sources. On the contrary, no association of knowledge was established with other variables such as education status of mother, annual income of family, and child-related variables such as age of the child, shunt revision, and head circumference of the child. The result of the study is congruent with the findings by Ann and Freeman,[9] which establishes no correlation between the pretest knowledge score with demographic variables such as age and gender of the child, number of children at home, gender of the caregiver, child’s primary diagnosis, which was determined with the help of Spearman’s rank correlation coefficient.

The study findings of a survey by Gulbin et al.,[10] among 60 parents of the patients with shunted hydrocephalus, prove that the education level of the parents had a significant effect at P = 0.0001 on the knowledge regarding the definition and cause of hydrocephalus and why a shunt is implanted. The answers given by parents who were illiterate regarding definition and cause of hydrocephalus and shunt surgery were 30% and 15% correct, respectively. All the parents who had university level education gave correct answer to all the questions related to definition and cause of hydrocephalus.[10] In this study, majority of the parents, seven (35%) of them had completed secondary or graduate level education. Also, as sample states, 19 (75%) of them had previous knowledge, which was obtained from various sources such as health professional, mass media, and life experience.

A significant difference was observed in the frequency of shunt revision, between patients whose parents have sufficient (60%) and insufficient (30%) knowledge about the signs and symptoms of shunt malfunction (P = 0.009). Sufficient knowledge about shunt malfunction has key role in the early recognition of complication.

Conclusion

The study on the effectiveness of structured teaching program on knowledge regarding home care management of children with hydrocephalus and shunt among their parents regarding the care of children with hydrocephalus and shunt was a successful venture. It depicts the dire need and importance of implementing various interventions for parents and children with chronic illness. It would definitely improve knowledge about disease, developing their skills to cope with patient’s condition, and would contribute to build a healthy generation. In the long run, imparting knowledge to the parents/caregivers of children with shunted hydrocephalus can improve the quality of life of these children.

Limitations

The number of samples used in the study was 20 and a comparison with control group was not included. The tool assessed only the knowledge component. The study did not assess the practice and the attitude of parents.

Relevance to clinical practice

Nursing professionals working in neurosurgery units need to give perioperative education, which includes care at home, importance of follow-up care, and how and when to seek appropriate medical advice to the parents of those children who undergo shunt surgery. This would reduce the length of time between onset of shunt malfunction signs and symptoms and caregivers seeking medical care for the children, thus further avoidable complications can be prevented. A care guide for the care of children with hydrocephalus and shunt, including the child’s shunt-related information could be made available online for long-term use for the parents.

Summary

What does this paper contribute to the wider global clinical community?

• The education of caregiver has great significance in improving the quality of life of children with hydrocephalus and shunt in various health-care settings.

• Both the parents as well as the health professionals can use a well-prepared care guide as a reference.

• The crucial role played by parents in taking decisions related to care of children with hydrocephalus and shunt.

Financial support and sponsorship

Nil.

Conflicts of interest

There is no conflicts of interest.