Effect of Instructional Guidelines on the Parent's  Care of Neonates with Neural Tube Defects

doi:10.21203/rs.3.rs-4703044/v1

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Research Article

Effect of Instructional Guidelines on the Parent's Care of Neonates with Neural Tube Defects

https://doi.org/10.21203/rs.3.rs-4703044/v1

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Background Neural Tube Defects account for the most congenital anomalies of the central nervous system for paediatric patients. The presence or diagnosis of any congenital anomalies, especially neural tube defects can have a significant impact on parents holistically. This study aimed to evaluate the effect of instructional guidelines on parents’ care for neonates with neural tube defects.

Methods: A quasi-experimental design was used to conduct this study. This study was conducted in the neonatal intensive care unit and the Neurological Department at the Children's Hospital affiliated to Ain Shams University Hospital and Helwan General Hospital. A convenience sample consisting of 40 parents and their neonates who suffered from neural tube defects was used.

Results: There was a marked improvement in parents’ knowledge and reported practices as well as the stress level after implementation of the instructional guidelines. There were strong positive correlations between studied parents’ total knowledge and their total reported practices related to their care for their children with neural tube defects. There was a statistically significant relationship between the gender of the studied parents and their knowledge, practices and PSI regarding the care of neonates with Neural Tube defects post-implementation of instructional guidelines (P = 0.000, P ≤ 0.001).

Conclusion: The implementation of the instructional guidelines has a positive effect on parents’ care for neonates with neural tube defects, so the research findings support the research hypothesis.

Neonates

Neural tube defects

Instructional guidelines

Parent care

There is a lack of unified guidelines for parents to provide appropriate care for their newborns and promote their growth and development.
Managing NTDs requires a multidisciplinary team approach. Early intervention and physical therapy are essential during the neonatal period.
Parents' education and adherence to guidelines are essential for improving neonatal outcomes.
This study aligns with the global strategy of Sustainable Development Goals (SDGs) Goal 3 to fulfil Target 3.2: to end all preventable deaths under 5 years of age, as NTDs are avoidable conditions.

Neural Tube Defects (NTDs) are among the most common congenital malformations in neonates. They occur during embryonic development and can significantly affect the quality of life from birth throughout life. Although the exact cause of NTDs is not fully understood, both genetic and environmental factors play a significant role in their development. NTDs occur when the neural tube fails to close properly during the morphogenetic process. Two of the most common types of NTDs are spina bifida and anencephaly. Despite various preventive measures, NTDs, along with congenital heart defects, are among the most common serious birth defects worldwide (Isakovic, 2022).

The most common congenital anomalies of the Central Nervous System (CNS) are NTDs, which occur when the neural tube fails to close between the 3rd and 4th weeks of embryonic development. These defects, including spina bifida, encephalocele, and anencephaly, present a significant problem in child neurology. The term "malformation" refers to any structural abnormality of the CNS during the embryonic or foetal period, regardless of its cause (Marilyn, 2019).

Neonates born with NTDs can survive, but they often face increased health risks throughout their lives. They may experience mental and physical disabilities, including issues with movement and sensation in their lower limbs, as well as difficulties controlling their bladder and bowel. Many surgeries are typically needed to close the spinal column, stabilize the joints, and address associated complications such as hydrocephalus, but these procedures cannot fully restore normal function. As a result, when parents receive a prenatal diagnosis of NTDs, almost three-quarters of them choose to terminate the pregnancy (Maged et al., 2015).

The neonatal period (NP) refers to the first four weeks of an infant's life, whether the infant is born full-term or prematurely. This period is marked by rapid development and change and is crucial for the establishment of feeding and bonding patterns in infancy. It is also a critical time for identifying and addressing any post-birth complications or congenital conditions (Bell et al., 2021).

Neural tube defects are serious birth defects that affect the brain and spine, and they create a significant and preventable public health burden. It is estimated that 300,000 babies are born with NTDs globally each year, leading to approximately 88,000 deaths and 8.6 million Disability Adjusted Life Years (DALYs). In low-income countries, NTDs may be responsible for 29% of neonatal deaths related to observable birth defects. As infectious disease morbidity and mortality decrease worldwide, the impact of birth defects on under-5 morbidity and mortality will continue to increase proportionally (WHO, 2015).

The presence or diagnosis of any congenital anomalies, especially NTDs, can have a significant impact on parents holistically. The initial response is usually shock, as the news is unexpected. Parents' responses vary among grief, helplessness, and guilt. Many parents have a combination of hope and concern for the future welfare of their children. Therefore, adequate information, qualified care, and professional support are highly needed and could help ensure healthy growth and development for newborns (Hinds and Linder, 2020 - Elfeky, 2023).

The role of a paediatric nurse is crucial in providing care for parents and neonates with NTDs. This role involves directly providing care, educating parents about their health to address any knowledge gaps, and offering support after the neonate is discharged. The nursing role focuses on educating and guiding parents to prevent infections, promote skin integrity, prevent lower extremity contractures, ensure proper positioning, and help families cope with and understand the situation (Makelarski et al., 2021).

Study Aim and Hypothesis

This study aimed to evaluate the effect of instructional guidelines on parents’ care for neonates with neural tube defects through the following objectives:

Assessing parents’ knowledge, reported practices and stress levels regarding NTDs.
Designing and implementing instructional guidelines related to the needs of parents with neonates with neural tube defects (NTDs).
Evaluating the effect of instructional guidelines on parents of neonates with neural tube defects (NTDs).

Research hypothesis

this research assumed that the instructional guidelines would have a positive effect on parents’ care for neonates with neural tube defects.

Study design

A quasi-experimental research design was utilized to conduct this research in the Neonatal Intensive Care Unit (NICU) at Ain Shams University Hospital and the Neurological Department at the Children's Hospital affiliated with Ain Shams University Hospital and Helwan General Hospital. A convenient sample consisted of 40 parents accompanied by neonates who suffered from NTDs who attended the previously mentioned settings regardless of their characteristics and agreed to participate in the study.

Tools for data collection:

Three tools were utilized in this study and are organized as follows:

1st tool: An interview questionnaire (before and after).

This questionnaire was developed by the researcher after reviewing the related literature in a simple Arabic language to suit all parents’ knowledge related to their awareness about the care of neonates suffering from NTDs. The time consumed to complete this tool for each parent was 30 minutes (the researcher conducted the interview and filled out the tool for parents who could not read and write). It consisted of two parts as follows:

Part (I): Characteristics of the studied sample that aimed to assess parents' and neonates’ characteristics, including sex, age, marital status, level of education, having other children, consanguinity, family history of congenital anomalies, family history of chronic illness, pregnancy history, antenatal care, labor history, neonatal diagnosis, pre-and postnatal history and NICU admission.
Part (II): Knowledge of the studied parents about the disease aimed at assessing parents’ knowledge about neural tube defects, which includes definition, causes, types, signs and symptoms, diagnosis, management, and preventive measures.

2nd tool: Parents’ reported practices (before and after).

The researcher used standardized checklists to evaluate the practices of the parents regarding specific procedures as positioning, feeding, and wound care.

3rd tool: The Parenting Stress Index

The Parenting Stress Index (PSI) was used to evaluate parents' attitudes towards the disease process before and after receiving instructional guidelines. The index consists of 15 items on a Likert scale ranging from strongly agree (5) to strongly disagree (1).

Validity and Reliability

The adapted tools were evaluated by a group of three experts in paediatric health nursing to assess content validity, layout, and structure. The required modifications were applied based on the experts’ revisions and feedback. Cronbach’s alpha test was used to test the reliability of the proposed tools through the SPSS computer package version 28. It was 0.950 for “Knowledge of the parents regarding Neural Tube Defects,” 0.919 for “Practice of the parents regarding positioning, feeding and wound care procedures checklists” and 0.944 for the parenting stress index.

Pilot Study

A pilot study was carried out on 10% of the study sample (4 parents with neonates having NTDs) to test the applicability, feasibility, clarity of the questions and time needed to complete the study tools by the researcher and each subject. According to the results of the pilot, no modifications or omissions of items were performed, so the pilot sample was included in the study sample.

Fieldwork

The actual fieldwork was carried out over 12 months from the first of January 2023 until the end of December 2023. The actual work was divided into four phases:

1. Assessment phase

In this phase, the researcher used the constructed tools to collect data about parents’ knowledge and reported practices regarding the care of neonates suffering from neonatal tube defects (NTDs) (pretest). The researcher explained the purpose of the study and its expectations to the studied parents before starting the interviews and data collection. The questionnaire was completed by the parents themselves (except the parents who could not read and write). The time needed to complete the questionnaire depended on parents’ knowledge between 20 and 30 minutes.

The researcher filled out observational checklists while listening to and watching the parents’ reported practices. The time needed to complete the checklists depended on the parents’ self-reported practices of the procedures. The duration of each procedure ranged from 2–5 minutes. The average time needed to complete all the checklists was 15–20 minutes.

The parental stress index was measured by the researcher after the parents of the neonates were interviewed. The time required to complete the parental stress index was 10–15 minutes.

2. Planning phase

In this phase, the instructional guidelines were developed and designed considering the literature review and modified according to parents’ educational needs regarding the care of neonates suffering from neonatal tube defects (NTDs). The instructional guidelines aimed to enhance parents’ knowledge and practices regarding the care of neonates suffering from neonatal tube defects (NTDs). The content of the instructional guidelines includes knowledge about the anatomy of the neural tube, different defects of the neural tube, causes of the neural tube defects, signs and symptoms, and complications. Instructional guidelines for parents related to the suitable care of neonates with neural tube defects as suitable for neonates with neural tube defects, a feeding process involving either normal breastfeeding or bottle feeding, suitable care for skin and wounds after repair, and alarming signs for seeking help from the medical team. The content of the instructional guidelines was constructed by selecting a suitable teaching method and appropriate media for teaching this content. In addition to the instructional guidelines, an illustrated booklet was designed by a researcher in the Arabic language to serve as a referral guideline for parents of neonates suffering from neonatal tube defects (NTDs). The booklet was evaluated for its validity and clarity by a panel of experts and professors in the field of paediatric nursing. Considering their comments, the necessary modifications were carried out, and the final form of the instructional guideline booklet was administered.

3. Implementation phase

The studied parents were divided into 4 groups; each group included 10 parents. The group comprised 2 theoretical and knowledge sessions and 2 practical sessions. The total number of sessions for each group was 4, and the implementation of the guidelines was repeated 4 times. At the beginning of the first session, the instructional guidelines were introduced, and each session started with summary feedback about the previous session. At the end of each session, the researcher informs parents about the date and time of the next session. Different teaching methods were used, such as small group discussions, demonstrations, and re-demonstrations. Suitable media was used, such as real equipment, posters, watching videos and booklets. Some equipment, such as surgical dressing, sterile gauze and dressing, betadine, disposable gloves, waterproof sheets, and extra medication, is used for practical purposes. The abovementioned equipment was not always available in the study setting training, so the researcher designed an ongoing kite for each parent for demonstrations and re-demonstrations processes on her budget.

4. Evaluation Phase

The same tools were used immediately after the implementation of the instructional guidelines to evaluate the outcomes.

Statistical Analysis design

Data collected from the studied sample was revised, coded, and entered using a Personal Computer (PC). Computerized data entry and statistical analysis were completed using the Statistical Package for Social Sciences (SPSS) version 28. Qualitative variables were compared using the Chi-square test and quantitative variables were compared using Pearson correlation coefficient ® for continuous parametric variables and Spearman rank correlation for ordinal nonparametric variables. The significance of the results was considered as follows: when P > 0.05 there is no statistical significance difference, P < 0.05 there is a statistical significance difference and P ≤ 0.001 there is a highly statistical difference.

The results of the current study demonstrated the characteristics of the studied parents and neonates, level of knowledge, reported practices and stress level of studied parents before and after implementation of the instructional guidelines as well as the effect of the instructional guidelines on parents care for their neonates with neural tube defects.

Regarding the characteristics of the studied parents Table (1) shows that more than half (52.5%) of the studied parents were aged 30 ˂ 40 years, with a mean age of 34.05 ± 4.50 years, and almost two-thirds (62.5%) of them were female. Moreover, this table reveals that more than half (55% and 52.5%) of the studied parents had medium education and free jobs, respectively. In addition, half (50%) of the studied parents had 3–4 children, with a mean number of children of 2.8 ± 1.1.

Continuing the characteristics of the studied sample Figure (1) shows that the majority (80%) of the studied parents had consanguinity. Most of the study sample (90%) did not have a history of congenital anomalies. Additionally, 67.5% of them had a history of chronic illness.

Related to characteristics of the studied neonates Table (2) shows that almost one-third (37.5%) of the neonates were diagnosed with myelomeningocele, with almost two-thirds (70%) requiring surgical intervention. Additionally, 72.5% of the patients experienced no complications after surgery. It is also important to note that the entire sample (100%) did not receive any health education regarding the diagnosis before discharge from the hospital.

One of the most important points that should highlighted in this research, is the history of mothers with neonates having NTDs during their pregnancy period as Table (3) shows that 80% of the mothers of the neonates did not take folic acid during pregnancy. Additionally, 92.5% of the samples were not exposed to radiation. The entire study sample (100%) did not smoke or drink alcohol. Approximately 62.5% of the participants did not take chronic medications, while 37.5% took medications, particularly anticonvulsant drugs (66.7%). Regarding hospitalization duration, almost half (47%) of the neonates were hospitalized for 20 to 30 days, with a mean (x̅) ± standard deviation (SD) of 21.7 ± 5.7.

Concerning knowledge level of the studied parents Figure (2) shows that before receiving the instructional guidelines, more than three-quarters of the participants (82.5%) had unsatisfactory knowledge about neural tube defects. However, after receiving the instructional guidelines, all of them (90%) had satisfactory knowledge. This difference was highly statistically significant, with a p value of less than 0.000 (p < 0.000).

Regarding reported practice level of the studied parents Figure (3) shows that before receiving the instructional guidelines, more than three-quarters of the participants (77.5%) had inadequate practices regarding the care of neonates with neural tube defects. However, after receiving the instructional guidelines, all of them (92.5%) had adequate practices. This difference was highly statistically significant, with a p value of less than 0.000 (p < 0.000).

Related to parent’s stress level index Figure (4) shows that before receiving the instructional guidelines, most of the participants (87.5%) experienced high stress about having neonates with neural tube defects. However, after receiving the instructional guidelines, almost two-thirds (62.5%) experienced high stress. This difference was highly statistically significant, with a p-value of less than 0.000 (p < 0.000).

Concerning the effect of the instructional guidelines on parents' care table (4) Pearson’s correlation coefficient was used to analyse the correlations between the knowledge, reported practice and parental stress index of the studied parents before and after implementation of the instructional guidelines. The observed correlations are strong, positive, and statistically significant (P = 0.000, 0.000, and 0.001, respectively)

Table (1): Distribution of the Studied Parents According to Their Characteristics (No = 40).

Items

Gender

• Male

• Female

37.5

62.5

Age

• 20 ˂ 30 years

• 30 ˂ 40 years

• 40 ≤ 50 years

52.5

27.5

Mean (x̅) ± SD

34.05 ± 4.50

Education

• Illiterate

• Can read and write

• Primary education

• Medium education

• Higher Education

12.5

Employment status

• Employed

• Not employed

• Free job

17.5

52.5

No. of Children

• 1–2 Child

• 3–4 Child

• More than 4

42.5

7.5

Mean (x̅) ± SD

3 ± 1.1

Figure (1)

Percentage of the studied parents according to their characteristics (n = 40).

Table (2)

Distribution of the studied neonates according to their medical records (n = 40).

Items

Diagnosis

• Arnold Chiari II

• Encephalocele

• Meningocele

• Myelomeningocele

• Spina bifida

12.5

37.5

Required surgical intervention.

• Yes

• No

Having complications after surgery

• Yes

• No

27.5

72.5

Taking any health teaching regarding diagnosis before discharge

• No

100

Table (3)

History of mothers during the pregnancy period (n = 40).

Items

Taking folic acid

• Yes

• No

Exposing to radiation

• Yes

• No

7.5

92.5

Smoking

• No

100

Drinking alcohol

• No

100

Taking any chronic medications

• Yes

• No

Type of Medications

• Anti-convalescent drugs

• Diabetes Mellites medication

• Hypertension medication

• Others

37.5

62.5

66.7

13.3

6.7

Duration of hospitalization

• 10 ˂ 20 days

• 20 ˂ 30 days

• ≤ 30 days

22.5

Mean (x̅) ± SD

21.7 ± 5.7

Figure (2): Percentage of the Studied Parents According to Their Total Knowledge about Neural Tube Defects Pre/Post (No = 40).

Figure (3)

Percentage of the Studied Parents According to Their Total Reported Practices Regarding the Care of Neonates with Neural Tube Defects Pre/Post (No = 40).

Figure (4)

Percentage of the Studied Parents regarding the Parental Stress Index Pre/Post (No = 40).

Table (4): Correlation between before and after implementation of the instructional guidelines.

			Before the Instructional Guidelines
			Knowledge	Practice	PSI
After the Instructional Guidelines	Knowledge	Pearson Correlation	-.724^**
	Knowledge	Sig. (2-tailed)	.000
	Practice	Pearson Correlation		-.546^**
	Practice	Sig. (2-tailed)		.000
	PSI	Pearson Correlation			.488^**
	PSI	Sig. (2-tailed)			.001

Note *The correlation is significant at the 0.01 level (bilateral)

Neural tube defects are among the most common congenital disabilities in children globally. NTDs are a significant cause of neonatal morbidity and mortality, and parental care plays a crucial role in neonatal prognosis. Different types of NTDs occur when the brain or spinal cord does not fully close during development. Multiple randomized control trials have shown a strong link between a lack of folic acid in the diet during pregnancy and the occurrence of neural tube defects (Oertel and Taping, 2022).

More than half of the studied parents aged 30 to 40 years. This finding is consistent with a study by Gedefaw et al. (2018), titled "Magnitude of Neural Tube Defects and Associated Risk Factors at Three Teaching Hospitals in Addis Ababa, Ethiopia," which reported that more than half of the parents studied (51.4%) were aged 30 to 39 years. On the other hand, it disagrees with Hassan (2021) in a study titled “Prevalence, Associated Factors, and Outcome of Neural Tube Defects: A Retrospective Study”, which revealed that 55.6% of neonates whose mothers were aged 20–29 years had NTDs.

Regarding the gender of the parents in the study, the findings indicated that almost two-thirds of them were female. This finding was consistent with that of O’Brien et al. (2019), who conducted a study entitled “A Comparison of Students and Parent Knowledge and Perceived Confidence About Brain Injury and Concussion” and reported that the proportion of female parents was more than two-thirds, while the proportion of male parents was more than one-third. From the researcher's point of view, this similarity in finding was related to mothers being the first and ultimate caregivers in this period and for this vulnerable age group.

Concerning parents’ level of education, the current study revealed that more than half of the studied parents had a medium level of education, which is not consistent with the findings of Gedefaw et al. (2018), titled "Magnitude of Neural Tube Defects and Associated Risk Factors at Three Teaching Hospitals in Addis Ababa, Ethiopia," who reported that almost half (41.4%) of the studied parents had only primary education. From the research prospection, this level of education in the current study is due to huge governmental efforts to enhance education.

Regarding the employment status of parents, more than half of the studied parents had unpaid jobs. This finding contrasts with Foster et al. (2020), who conducted a study titled "Parent Perspectives and Psychosocial Need Following Child Critical Injury: A Qualitative Inquiry" and found that most of the sample was unpaid employment. However, these results align with those of Gedefaw et al. (2018), as 52.3% of the mothers in their study were stay-at-home parents and were not employed. From the researcher's perspective, these findings are understandable, as neural tube defects are a critical condition affecting the central nervous system, requiring significant effort, time, and attention, especially for parents, particularly mothers.

Concerning the gender of the neonates studied, the present study revealed that females were the most affected gender, accounting for more than half of the studied neonates. This finding is consistent with Ehara et al. (1998), titled “Epidemiology of spina bifida in Tottori prefecture, Japan from 1976–1995”, which reported a reversal of male predominance and a male-to-female ratio of 1:1.1. Similarly, a Hungarian paper by Rab (2013) discussed “Prenatal diagnosis and further clinical characteristics of spina bifida” and reported a male-to-female ratio of 1:1.2, indicating female predominance. Additionally, a study by Gedefaw et al. (2018) revealed that 53.2% of the study sample was female and suggested that being male was associated with a 44% reduction in the risk of NTDs compared to being female. Controversially, a study conducted by Alatise et al. (2006) titled "Pattern and factors affecting management outcome of spina bifida cystica in Ile-Ife, Nigeria" a male-to-female ratio of 1.1:1 was reported. Similarly, a British group led by Malakounides et al. (2013) reported a similar sex distribution in their study titled "Single centre experience: long-term outcome in spina bifida patients", with a male-to-female ratio of 1.2:1. From the researcher's point of view, there is no specific relation between neural tube defects incidence and gender of neonates.

Regarding the mode of delivery of the studied neonates, the current study revealed that more than two-thirds of them were delivered via NVD (Normal Vaginal Delivery). These findings were not compatible with those of Gedefaw et al. (2018), as 93% of these products were delivered via NVD and only 7% via CS. Furthermore, Hassan (2021) indicated that in her research titled “Prevalence, Associated Factors, and Outcome of Neural Tube Defects: A Retrospective Study” (58.9%) of neonates who underwent emergency CS, this could be because most of the NTDs in the studied sample were hydrocephalus and needed urgent CS.

For congenital anomaly history, almost all of the studied parents in the current study had no congenital anomaly birth history, which agreed with the findings of Gedefaw et al. (2018), who revealed that 97.3% of the studied parents had no congenital anomaly birth history.

Regarding the consumption of folic acid, in a recent study, it was found that the majority of the mothers surveyed did not consume folic acid during pregnancy. This aligns with a study by Bower C. (2013), titled “Prevention of neural tube defects with folate”, and De-Regil (2015), titled “Effects and safety of periconceptional oral folate supplementation for preventing birth defects”, and Maged et al. (2015), titled “Periconceptional risk factors for spina bifida among Egyptian population: a case–control study,” which showed that 86.6% of the participants did not take folate supplements. From the researcher’s point of view, half of all cases of NTDs are believed to be related to a nutritional deficiency of folic acid, but the underlying mechanism is not clear. Correspondingly, most European health authorities recommend folic acid supplementation of 400 mg for pregnant women to prevent NTDs.

Regarding consanguinity, the current study demonstrated that the majority of the studied parents had consanguinity. This finding differs from that of Maged et al. (2015), who revealed that 49.5% of the study sample who had SB had positive consanguinity. Furthermore, Hassan, A. (2021) indicated that in her research titled 'Prevalence, Associated Factors, and Outcome of Neural Tube Defects: A Retrospective Study,' (44.4%) had parents' consanguinity. This finding was supported by Mohammed et al. (2013), who reported in their study 'Congenital Anomalies among Children: Knowledge and Attitude of Egyptian and Saudi Mothers' and Tayebi N. et al., (2010), who conducted a study 'The Prevalence of Congenital Malformations and its Correlation with Consanguineous.' From the research perspectives, This suggests that consanguinity is considered one of the most common contributing factors in transferring genetic traits related to congenital anomalies."

Furthermore, Maged et al. (2015) supported the findings of our study by reporting that 10% of the parents in their study had previous anomalies. However, they also found that 14.4% of the parents had a positive family history. Additionally, Ntimbani J. et al. (2020) conducted research titled “Myelomeningocele - A literature review” and reported that only 5% of myelomeningoceles occur in families with a positive family history, while 95% occur spontaneously in children of women with no family history.

In the present study, almost two-thirds of the participating mothers had a history of taking anticonvulsant drugs. This result contradicts the findings of Maged et al. (2015), as only 21.6% of the study group had a similar history. A history of taking antiepileptic drugs (AEDs), such as Depakine, Lamotrine, and Tegretol, was significantly more common in the SB (spina bifida) group (21.6%) than in the control group (1%) (P = 0.001). From the researcher's perspective, these drugs are believed to be linked to the occurrence of NTDs (neural tube defects), especially spina bifida.

Regarding the types of neural tube defects, in the current study, it was found that almost one-third of the newborns had myelomeningocele, almost two-thirds of whom needed surgical intervention. This study also revealed a different distribution of NTD types compared to that reported by Gedefaw et al. (2018), who reported 54.1% anencephaly, 40.5% spina bifida, and 5.4% encephalocele. In the current study, there were no cases of anencephaly; 37.5% had myelomeningocele, 30% had spina bifida, and only 10% had encephalocele.

When considering the education of parents before discharge from the hospital or during follow-up, as shown in Table (2), all the parents reported that they did not receive any information, suitable practices, or health education regarding the diagnosis or care of their children with neural tube defects. From the researcher's perspective, this lack of information could be due to healthcare providers not being fully aware of the importance of providing instructional guidelines and recognizing the crucial role that parents play in in-home care.

This finding aligned with that of Camp et al. (2015), who carried out a study entitled “Emergency Department Visits for Children with Acute Asthma: Discharge Instructions, Parental Plan, and Follow-through of Care-A Prospective Study”, which mentioned that no parent received or implemented any specific asthma strategies to reduce the impact of upper respiratory tract infections. Additionally, Kirk et al. (2015) studied “Supporting Parents Following Childhood Traumatic Brain Injury: A Qualitative Study to Examine Information and Emotional Support Needs across Key Care Transitions.” They reported that parents had unmet information and emotional support needs across the care trajectory from the time of the accident to their child’s return home. In the same context, El Tayar (2021), who conducted research titled “Discharge Plan for Parents Having Children suffering from Head Trauma”, showed that parents did not receive any information, suitable practices, or health education regarding the diagnosis or care of their children with head injury.

An evaluation of the knowledge of the studied parents regarding neural tube defects, as shown in Fig. 2, revealed an improvement after the implementation of the instructional guidelines compared to the pre-implementation of the guidelines. These findings corresponded with those of Sarmiento et al. (2022), who carried out a study about “Improving knowledge, attitudes, and practices on dengue and diarrhea in rural primary school students, their parents, and teachers in Colombia: A cluster-randomized controlled trial” that stated that the level of knowledge in parents whose children received the dengue intervention was greater than that in parents whose children did not receive the intervention. From the researcher's perspective, instructional guidelines and educational programs increased the level of knowledge among parents, which in turn had a positive impact on how they cared for their children.

According to the studied parents’ total reported practices, Fig. 3 shows that there was an improvement postimplementation of instructional guidelines compared to their implementation. These findings correspond to those of Rashed et al. (2021), who carried out a study entitled “Effectiveness of Maternal Training Program on Implementation of Care Provided to Their Children with Cerebral Palsy at Zagazig University Hospitals”, which reported that slightly less than a quarter of the studied mothers had satisfactory reported practice scores before the implementation of the educational module compared to half of them after the implementation of the educational module.

Regarding parental stress, as shown in Fig. 4, before receiving the instructional guidelines, more than three-quarters of the participants experienced high stress about having neonates with neural tube defects. However, after receiving the instructional guidelines, almost two-thirds experienced high stress. This difference was highly statistically significant, with a p value of less than 0.000. These results are like those of Oftedal et al. (2023), who conducted a study titled “Long-Term Impact of Diagnosed Fetal Anomaly on Parental Traumatic Stress, Resilience, and Relationship Satisfaction”, which revealed that parents of children with a congenital malformation experienced significantly elevated traumatic stress levels over time compared with parents of children without congenital malformation. In the same context, Fitzgerald, and Gallagher (2022) conducted a study titled “Parental Stress and Adjustment in the Context of Rare Genetic Syndromes: A Scoping Review”, which revealed that parents of children with rare genetic syndromes experienced greater distress related to other disabilities. From the researcher's perspective, these papers provide a comprehensive look at the various dimensions of parental stress associated with congenital anomalies and offer insights into both the short-term and long-term psychological impacts on parents that may affect their care for their neonates.

According to the current study, table 4 shows that there is a highly significant and positive correlation (P value ≤ 0.001) between the total knowledge, reported practices and parental stress indices of the studied parents postimplementation of the instructional guidelines. These findings follow Okelo et al. (2024), who investigated research titled “Parental stress and child stimulation practices: examining associations with child developmental outcomes over time in Kenya and Zambia”. This study explores the associations between parental stress, caregiving practices, and child developmental outcomes over time. This suggests that improved caregiver stimulation practices are likely to enhance children’s developmental outcomes. In the same context, Fang et al. (2022) conducted a study titled “Parent, child, and situational factors associated with parenting stress: a systematic review”, which provides an overview of factors related to parenting stress, which may include the impact of parental knowledge and practices.

The implementation of the instructional guidelines has a positive effect on parents’ care for neonates with neural tube defects, so the research findings support the research hypothesis. so that the research findings support the research hypothesis.

Ethics approval and consent to participate

Official approval to conduct the planned study was obtained from the Scientific Research Ethics Committee at the Faculty of Nursing, Helwan University. Participation in the study was voluntary, and parents were provided with complete information about the study before signing the informed consent form to participate in the study. The ethical considerations included an explanation of the purpose and nature of the study, stating the possibility of withdrawing at any time, the confidentiality of the information and that all the results and data will be used for research purposes only. Ethics, values, culture, and beliefs were respected during the implementation, following, and evaluation of the study process. Every study technique was carried out in accordance with the ethical standards delineated in the declaration of Helsinki and its later amendments.

Competing interests

The authors declare no competing interests.

Funding

This paper is part of a PhD. project of the first author funded by herself.

Author Contribution

The authors confirm contributions to the paper as follows. A.K. led the study conceptualization, design, and data collection, and performed data analysis. She wrote the first draft of the manuscript and contributed to reviewing and editing the manuscript. S.S. and H.R. helped with reviewing, and editing the final manuscript. All authors have read and approved the final version of the submitted manuscript.

Acknowledgement

The authors gratefully thank all the participants of this study. The authors also acknowledge Prof. Dr Safaa Salah Ismail, Professor of Pediatric Health Nursing and Dean of the Faculty of Nursing at Helwan University, for Prof. Dr Hayam Tantawy, Professor of Pediatric Health Nursing Faculty of Nursing Ain Shams University, for their support, facilitation advice, valuable explanations, and feedback, which reinforced and encouraged me to accomplish this research

Data availability

The datasets used and/or analysed during the current study are available from the corresponding author upon reasonable request. The data are not publicly available because this issue was not considered within the informed consent signed by the participants of the study.

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No competing interests reported.

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Effect of Instructional Guidelines on the Parent's Care of Neonates with Neural Tube Defects

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Background

Methods

Study Aim and Hypothesis

Study design

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3rd tool: The Parenting Stress Index

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Pilot Study

Fieldwork

1. Assessment phase

2. Planning phase

3. Implementation phase

4. Evaluation Phase

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