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Contents lists available at ScienceDirect
Seizure journal homepage: www.elsevier.com/locate/yseiz
Effect of a self-instructional module on the child rearing knowledge and practice of women with epilepsy P.P. Saramma, P.S. Sarma, Sanjeev V. Thomas * Kerala Registry of Epilepsy and Pregnancy, Comprehensive Epilepsy Care Program, Sree Chitra Tirunal Institute for Medical Sciences and Technology, Trivandrum 695011, Kerala, India
A R T I C L E I N F O
A B S T R A C T
Article history: Received 10 October 2013 Received in revised form 12 February 2014 Accepted 14 February 2014
Women with epilepsy (WWE) have poorer knowledge and skill in child rearing than women without epilepsy. Purpose: To evaluate the effect of a self-instructional module (SIM) on the child rearing knowledge (CRK) and practice (CRP) of WWE and developmental outcome of their babies. Methods: One hundred women in first trimester of pregnancy that were enrolled in to the Kerala Registry of Epilepsy and Pregnancy and consenting to participate were given a self instructional module (SIM) or a comparator booklet by random concealed allocation. Their child rearing knowledge (CRK) was assessed by a standardized protocol at entry (first trimester) and at 3–4 months postpartum. Their child rearing practice (CRP) was evaluated in third postpartum month. The developmental outcome of babies was assessed at 1 year of age as per registry protocol. Results: Eighty eight women completed this 1 year study. The CRK score was significantly higher (p = .034) for the intervention group (32.91 5) when compared to the comparator group (30.61 5) However, a corresponding improvement in CRP score was not observed for the former. Developmental outcome of 68 babies showed a positive weak correlation between CRP and developmental quotient both mental and motor. The intervention group demonstrated significant increase in their CRK. Nevertheless the results did not indicate a significant improvement in the CRP. Conclusion: The SIM improved the CRK of WWE. Nevertheless, the child rearing practices did not show corresponding improvement. ß 2014 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved.
Keywords: Child rearing Knowledge Practice Child care Parenting Development
1. Introduction About 1.3 million women in India have epilepsy.1 Several studies have addressed the maternal and fetal outcome of women with epilepsy (WWE).2–10 However, not many of them have adequately or systematically addressed the child caring and child rearing issues of WWE. Children of WWE are at risk of developmental delay, low IQ,11,12 low linguistic achievements,13 and poor scholastic performance.14 Possessing sufficient child rearing knowledge and following healthy child rearing practices are critically important for the optimum growth and development of children. Previous observational studies have shown that, WWE have poor child rearing knowledge and practice.15,16 A knowledge
gap exists in this area due to lack of specific studies targeting this issue.17,18 In order to increase the child rearing knowledge and healthy practices of WWE during pregnancy, we have developed a self-instructional module (SIM) titled ‘You and your baby – conception, labor, and infant care: a self-instructional module for women with epilepsy’. This SIM was designed to promote selflearning by pregnant WWE for safe pregnancy, confinement and optimum child rearing during infancy. The objective of this paper is to evaluate the effect of the SIM on the child rearing knowledge (CRK), child rearing practice (CRP) and infant outcome in WWE.
2. Materials and methods 2.1. Setting and sampling
* Corresponding author at: Department of Neurology, Sree Chitra Tirunal Institute for Medical Sciences and Technology, Trivandrum 695011, India. Tel.: +91 471 2524468; fax: +91 471 2524588. E-mail addresses: [email protected], [email protected] (S.V. Thomas).
The study was conducted among the WWE who were registered in the Kerala registry of epilepsy and pregnancy (KREP) as described elsewhere.16,19,20 This registry enrolls WWE in the preconception phase or during pregnancy and continues to
http://dx.doi.org/10.1016/j.seizure.2014.02.006 1059-1311/ß 2014 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved.
Please cite this article in press as: Saramma PP, et al. Effect of a self-instructional module on the child rearing knowledge and practice of women with epilepsy. Seizure: Eur J Epilepsy (2014), http://dx.doi.org/10.1016/j.seizure.2014.02.006
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monitor them as per protocol till their children are 12 years old. All newborns are examined at birth, at 3 months of age (physical examination, echocardiography, and ultrasonography of the abdomen) and at 1 year (motor and mental developmental quotient by Developmental assessment scale for Indian infants). The maternal and infant characteristics including the motor and mental development quotient of the children assessed at 1 year of age11 were abstracted from the clinical records. The KREP, operational since 1998, has more than 2000 entries. The registry has the approval of the Institutional Ethics Committee and the consent from each person at the time of enrollment in the registry. One of the investigators screened the new enrollment to this registry and identified eligible WWE who satisfied the selection criteria for this study. The inclusion criteria were: WWE should be in first trimester of pregnancy and should be able to read and comprehend the local language (Malayalam) in which the SIM was prepared. WWE who were in the preconception period, advanced stage of pregnancy (second or third trimester) or having a repeat pregnancy during the study period, were not included. 2.2. Instruments A pre-tested questionnaire was used to evaluate the child rearing knowledge of all the participants. They were then given a sealed book packet containing either the test SIM or a comparator booklet in a blinded manner. The SIM, a 56 page 1/8 dummy size booklet titled ‘You and Your baby – conception, labor, and infant care: a self-instructional module for women with epilepsy’ was written in simple question answer format, in local language (Malayalam). It was specifically developed for pregnant WWE and had validated contents. It contained two sections, each with six units, targeted toward antenatal care and infant care, respectively. The section on antenatal care consisted of the following units: regular medical check-up, balanced diet, self-care, minor disorders of pregnancy, toward hospital for delivery, and, postnatal care and contraception. The section on infant care contained the following units: growth and development, successful breastfeeding, complementary feeding, accidents and emergencies, immunization and protection, and, mother infant bonding and infant stimulation. A self-test (‘check your knowledge’) with answer keys was included at the end of each section. It was well illustrated with pictures and tables in order to increase the readability. A bookmarker with the unit titles and page numbers was also provided along with the SIM. The comparator booklet was an existing health education booklet on epilepsy in vernacular language in the Department of Neurology, Sree Chitra Tirunal Institute for Medical Sciences and Technology, Trivandrum, Kerala. This booklet was having a similar size to SIM, but its contents were in text book format and mostly related to epilepsy, clinical manifestations, medical management and first aid during a seizure. Pregnancy related matters were limited to only one page. A total of 100 booklets (fifty SIM and fifty comparator booklets on epilepsy) were used for this trial. Computer generated random numbers (1–100) were assigned to 100 identical opaque brown, sealed envelopes each containing one booklet. These envelopes were arranged serially from 1 to 100 and then handed over to the WWE according to the order of enrolment. They were instructed to open the packet and read the book at their convenience, at home. We adopted a pretest – posttest control group design for the present study. Each WWE was evaluated at enrolment for baseline knowledge and at 3 months postpartum for knowledge and practice regarding child care with the previously validated scales.21 The Baby outcomes at birth and at three to 4 months were assessed using validated ‘Baby outcome scale’: a scale which included outcome at birth (7 items, score = 15), and outcome at
three to 4 months (8 items, score = 12). A structured interview to determine the utility of the SIM/comparator booklet on epilepsy was conducted at 3 months. At the end of the study, the code was opened and the intervention group (those who received the SIM) and the control group (those who received the comparator booklet) were identified. 2.3. Statistics The statistical analyses were performed using Statistical Package for Social Sciences (SPSS) for windows version 14.0. Continuous variables were analyzed using student’s t-tests while categorical variables were analyzed using Chi square tests. The level of significance was kept as p 0.05. Pearson’s correlation was used to detect agreement between child rearing knowledge and practice scores. 3. Results Out of the 100 women who were recruited over 3 years, 88 WWE (43 in the intervention and 45 in the control group) completed this prospective study. Sixty-eight infants (33 in the intervention and 35 in the control group) were followed up at 1 year and the mental and motor development quotients were taken from the records. The WWE in the intervention and control group were comparable with regard to socio-demographic variables like age, education, occupation, religion, place of residence, type of family, the presence of elder women in the family, reading habits of health related periodicals, and standard of living index. The groups were also comparable with regard to age of onset of epilepsy, duration and type of epilepsy, seizure type, and antiepileptic drug (AED) therapy. However, their parity statuses were significantly different (Table 1). 3.1. Effect of the SIM on CRK and CRP The baseline child rearing knowledge scores of both the intervention and control group of WWE were similar (23.96 6.4 vs 23.1 6.2; p = 0.5) in all the child rearing domains. The mean post-test scores for child rearing knowledge (CRK) have improved significantly in the intervention group than the control group (32.91 5 vs 30.61 5; p = .034) (Table 2). However we did not find a significant improvement in the mean child rearing practice (CRP) of WWE in the intervention group compared to the control group (p = 0.33). 3.2. Baby outcome The outcome scores of infants in the intervention and control group of WWE were similar at birth (14.23 1.3 vs 13.87 1.3; p = 0.19) and at three to 4 months of age (10.35 1.9 vs 10.38 1.8; p = 0.94). The motor and mental developmental quotient (DQ) at 1 year also was comparable in both the groups (p = 0. 64, p = 0.78) (Table 2). While a correlation was noted between CRP and motor developmental quotient (r = 0.221; p = 0.07) as well as CRP and mental developmental quotient (r = 0.216; p = 0.08), it was not statistically significant. 3.3. Attitude of WWE toward the SIM/comparator booklet The participants displayed a significant difference in reading of the SIM or the comparator booklet on epilepsy completely. Their opinion regarding the utility and benefit of these booklets also varied significantly (Table 3). More number of women in the
Please cite this article in press as: Saramma PP, et al. Effect of a self-instructional module on the child rearing knowledge and practice of women with epilepsy. Seizure: Eur J Epilepsy (2014), http://dx.doi.org/10.1016/j.seizure.2014.02.006
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Table 1 The demographic maternal and epilepsy characteristics of the intervention group and the control group. Variables
Intervention (SIM) group
Control group
p Value
Age in years mean (SD) Age at marriage in years mean (SD) Age of onset of epilepsy in years mean (SD) Duration of illness in years mean (SD)
25.44 22.72 14.02 11.30
25.68 23.66 14.28 11.20
0.798 0.254 0.840 0.950
Educational status of women n (%) Primary school High school/higher secondary Graduation and post-graduation Technical/professional
1(2) 34(68) 11(22) 4(8)
5(10) 33(66) 10(20) 2(4)
0.293
Occupational status of women n (%) Unemployed Semiskilled/skilled Professional Others
41(82) 1(2) 4(8) 4(8)
44(88) 4(8) 1(2) 1(2)
0.222
Type of family n (%) Nuclear Extended
9(18) 41(82)
8(16) 42(84)
0.500
No. of members in family n (%) 2–4 5– 9
23(46) 27(54)
27(54) 23(46)
0.870
Presence of elder women in family n (%) Yes No
40(80) 10(20)
41(82) 9(18)
0.500
Religion n (%) Hindu Christian Muslim
37(74) 9(18) 4(8)
33(66) 11(22) 6(12)
0.661
Place of residence n (%) Urban Rural
17(34) 33(66)
11(22) 39(78)
0.133
Reading habits – health related periodicals n (%) Yes No
10(20) 40(80)
6(12) 44(88)
0.414
Standard of living index n (%) Low Medium High
18(36) 22(44) 10(20)
18(36) 19(38) 13(26)
0.737
Type of epilepsy n (%) Generalized Localization Related unclassified
18(36) 29(58) 3(6)
19(38) 28(56) 3(6)
0.860
23(46) 27(54)
22(44) 26(52) 2(4)
0.560
Type of AED therapy n (%) None Monotherapy 2 AEDs 3 AEDs
9(18) 30(60) 10(20) 1(2)
3(6) 32(64) 11(22) 4(8)
0.180
Parity status Primipara (Para 0) Para 1 Para2
25(50) 23(46) 2(4)
36(72) 14(28) 0
Type of seizure n (%) Generalized Partial unclassified
(4.7) (4.5) (5.5) (6.6)
(4.6) (3.7) (7.1) (7.1)
0.046
intervention group who read the SIM completely had expressed their opinion in a more positive way than the control group who read the comparator booklet on epilepsy (p = 0.000). 4. Discussion The setting of a KREP registry gave us the unique opportunity to prospectively study the child care knowledge and practice of WWE and evaluate the effect of a SIM on infant outcomes. Our findings
indicate that the SIM can be used as an effective instrument to bridge the gap in CRK among WWE. The intervention module, SIM has covered the entire child rearing domains particularly the importance of breastfeeding, timely starting the complementary feeds, monitoring growth and development, cleaning and protection including immunization, prevention of accidents as well as infant stimulation. It was written in the local language, easily understandable and in simple module form. The question answer style in which the content is presented
Please cite this article in press as: Saramma PP, et al. Effect of a self-instructional module on the child rearing knowledge and practice of women with epilepsy. Seizure: Eur J Epilepsy (2014), http://dx.doi.org/10.1016/j.seizure.2014.02.006
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Table 2 Child rearing knowledge (CRK) score, child rearing practice (CRP) score of WWE and outcome score of infants in the intervention and the control group. Intervention group mean (SD)
Control group mean (SD)
p Value
Baseline CRK CRK score at 3 months CRP score at 3 months
23.96(6.4) 32.91(5) 28.7(2.9)
23. 1(6.2) 30.61(5) 28.02(3.5)
0.497 0.03 0.33
Baby outcome at birth Maximum score 15
14.23(1.3)
13.87(1.3)
0.19
Baby outcome at 3–4 months Maximum score 12
10.35(1.9)
10.38(1.8)
0.94
Baby outcome at 1 year Developmental quotient motor Developmental quotient mental
86.8(33.9) 91.9(33.3)
90.8(35.4) 89.7(33.4)
0.64 0.78
Table 3 Opinion of WWE toward the SIM/comparator booklet. Parameters
Intervention group
Control group
n = 43
n = 45
F (%)
F (%)
Reading the SIM/comparator booklet Read partly 6(14.0) Read fully 37(86.0)
41 (91.1) 4(8.9)
Usefulness Not useful Very much useful
13(28.9) 32(71.1)
p Value
0.000
0.000 0 43(100)
could spark and maintain the interest in the readers. It could be taken home, conveniently read and assimilated at each individual’s convenience. It covered all the domains of antenatal care as well as child rearing during infancy. The SIM was given during early pregnancy, a period when the expectant women were very eager to learn about the changes, care and precautions during pregnancy. Reading such materials during pregnancy period would improve the knowledge in child rearing and equip them to properly handle the new maternal role. This module can also be used to practice optimum child rearing after delivery. The module is short enough that one can finish reading it in 60–90 min. The post section questions accompanying each unit are expected to create interest. The answers to these questions provide clarity and are given only at the end of the booklet to make the reader think, and avoid speculation. It is self-motivating and the answers could act as incentive to the readers. Several studies have established that planned maternal education could improve child rearing knowledge.22–24 The most challenging areas in child caring are caring for their baby outside the home and bathing.18 Some of these studies have used different teaching techniques and tested their significance in improving the knowledge of parents. Huang found that a demonstration class by a trained pediatric nurse was significantly more effective than a mailed pamphlet at improving certain parental practices related to febrile convulsions.25 In this study 86% of the WWE agreed that they had read the module completely. All women in the intervention group found the SIM very useful, and expressed positive attitude toward it. Women are likely to read materials that are important and meet their immediate needs during pregnancy. Reading such materials during pregnancy period would certainly improve their knowledge in child rearing. An age-paced parenting newsletter could be another acceptable and useful method of supporting parents in the early months of a
child’s life that could promote positive changes in parenting behavior. Though the SIM has significantly improved the mean child rearing knowledge of the intervention group, the same did not translate into a significant improvement in their mean CRP. It is important to explore the reasons why knowledge is not often translated in to healthy practices. Socio cultural factors, value systems, opinion and decisions of the influential persons in the family, peers, and several other factors may be directly or indirectly influencing the final practice or avoidance of certain practices in child care. Researchers in UK found that, 95% of mothers reported reading all or part of a newsletter provided to them, yet changes in parenting style were spontaneously reported by only 28%.26,27 An interventional study on child rearing among American Indian adolescent mothers also revealed similar pattern.22 In spite of the mother herself being quite knowledgeable about her competence to take care of the baby, the deleterious effect of some of the AEDs or actual or potential risk of seizure recurrence might restrict her ability to optimally attend to the baby. It is possible that certain unknown barriers impair the translation of increased CRK into immediate practices. In addition, CRPs are usually influenced by social customs, traditions and may reflect the aggregate attitude of the family at large especially in joint family setting. Since the intervention group had significantly larger proportion of multipara mothers, it could be possible that the CRPs already learned by the mothers previously, might have been difficult to be changed. The lack of significant improvement in child rearing practice or outcome might be due to the fact that the final observations were done during early infancy (3–4 months), a period when the child rearing was unlikely to be fully under the control of the mothers in this region of India. Many times the elder women in the family undertake the main responsibility, especially in case of WWE. This study exposes another important fact that an improvement in knowledge alone need not necessarily result in equal improvement in practice. Further studies are required to understand and modify the dynamics that resist changes in practices even when knowledge on healthy practices is available. zChild rearing demands on the mother certainly increases at later stages of infancy. As Barlow et al.22 suggested, a longer and larger trial is needed to understand the intervention’s potential to improve parenting and related child outcomes. The follow up in this study of 68 infants at 1 year showed only a minimal positive change in mental developmental quotient for those who received the SIM. There was a trend (not statistically significant) toward higher developmental outcome according to the maternal child rearing practice in this study. Kolobe28 found that maternal nurturing behaviors, parentchild interaction, and quality of the home environment were positively correlated with the infants’ cognitive development. Motor development of the child is strongly associated with the infants’ characteristics rather than with maternal child rearing practices. A SIM that can improve the child rearing knowledge of WWE has great relevance in the Indian context where there is a scarcity of epileptologists. Even when available, these specialists may not get enough time to interact with the women adequately in busy clinics. But, if made available, literate people can use the SIM as a selflearning material to improve their child rearing knowledge, thus saving specialists’ time. This self-learning material could easily be made available to pregnant WWE and or any WWE of child bearing age to improve their child rearing knowledge, in clarifying their concerns, eliminate misconceptions, change unfavorable attitudes and promote ideal child rearing knowledge and practices. 5. Limitations The impact of family support particularly the older family members of WWE was not explored in this study. Hence the true
Please cite this article in press as: Saramma PP, et al. Effect of a self-instructional module on the child rearing knowledge and practice of women with epilepsy. Seizure: Eur J Epilepsy (2014), http://dx.doi.org/10.1016/j.seizure.2014.02.006
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influence of these decision makers on the child rearing practices and the infant outcome are not available. Approximately 83% of the WWE lived in a household with elder women; therefore this area needs further exploration. 6. Conclusions A printed instrument like SIM can substantially increase the child rearing knowledge of WWE. In a literate community, the SIM is a convenient, inexpensive and easy to deliver instrument to bridge the knowledge gap that exists in this field. However, it may not automatically lead to better practices of child care, which appear to be influenced by several factors other than the precise knowledge of child care. Conflict of interest statement The authors have nothing to declare as conflict of interest. References 1. Thomas SV. Management of epilepsy and pregnancy. J Postgrad Med 2006;52:57–64. 2. Meador KJ, Baker GA, Browning N, Clayton-Smith J, Combs-Cantrell DT, Cohen M, et al. Effects of breastfeeding in children of women taking antiepileptic drugs. Neurology 2010;75(November (22)):1954–60 [Epub 2010 November 24] PubMed PMID: 21106960; PubMed Central PMCID: PMC 3014232. 3. Thomas SV. Management of epilepsy in pregnancy. Neurol India 2011;59:59–65. 4. Harden CL, Hopp J, Ting TY, Pennell PB, French JA, Hauser WA, et al. Practice parameter update: management issues for women with epilepsy – focus on pregnancy (an evidence-based review): obstetrical complications and change in seizure frequency: report of the Quality Standards Subcommittee and Therapeutics and Technology Assessment Subcommittee of the American Academy of Neurology and American Epilepsy Society. Neurology 2009;73:126–32 [Epub 2009 April 27] Review. PubMed PMID: 19398682. 5. Artama M, Auvinen A, Raudaskoski T, Isojarvi I, Isojarvi J. Antiepileptic drug use of women with epilepsy and congenital malformations in offspring. Neurology 2005;64:1874–8. 6. Holmes LB, Harvey EA, Coull BA, Huntington KB, Khoshbin S, Hayes AM, et al. The teratogenicity of anticonvulsant drugs. N Engl J Med 2001;344(April (15)):1132–8. PubMed PMID: 11297704. 7. Pennell PB. Pregnancy in women who have epilepsy. Neurol Clin 2004;22:799– 820. 8. Yerby MS, El Sayed YY. Pregnancy risks for the woman with epilepsy. In: Morrell MJ, Flynn KL, editors. Women with epilepsy – a handbook of health and treatment issues. Cambridge: Cambridge University Press; 2003. p. 203–14. 9. Harden CL, Meador KJ, Pennell PB, Hauser WA, Gronseth GS, French JA, et al. Practice parameter update: management issues for women with epilepsy – focus on pregnancy (an evidence-based review): teratogenesis and perinatal
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outcomes: Report of the Quality Standards Subcommittee and Therapeutics and Technology Assessment Subcommittee of the American Academy of Neurology and American Epilepsy Society. Neurology 2009;73:133–41. Borthen I, Eide MG, Daltveit AK, Gilhus NE. Delivery outcome of women with epilepsy: a population-based cohort study. Br J Obstet Gynaecol 2010;117:1537–43. Thomas SV, Ajaykumar B, Sindhu K, Nair MK, George B, Sarma PS. Motor and mental development of infants exposed to antiepileptic drugs in utero. Epilepsy Behav 2008;13:229–36. Meador KJ, Baker GA, Browning N, Clayton-Smith J, Combs-Cantrell DT, Cohen M, et al. Cognitive function at 3 years of age after fetal exposure to antiepileptic drugs. N Engl J Med 2009;360:1597–605. Thomas SV, Sukumaran S, Lukose N, George A, Sarma PS. Intellectual and language functions in children of mothers with epilepsy. Epilepsia 2007;48:2234–40. Adab N, Kini U, Vinten J, Ayres J, Baker G, Clayton-Smith J, et al. The longer term outcome of children born to mothers with epilepsy. J Neurol Neurosurg Psychiatry 2004;75:1575–83. Saramma PP, Thomas SV, Sarma PS. Child rearing issues for mothers with epilepsy: a case control study. Ann Indian Acad Neurol 2006;9:158–62. Saramma PP, Sarma PS, Thomas SV. Women with epilepsy have poorer knowledge and skills in child rearing than women without epilepsy. Seizure 2011;20:575–9. Cabral-Lim LI, Delivery. breast feeding and child rearing in women with epilepsy. Neurol Asia 2013;18(Suppl. 1):31–4. Bagshaw J, Crawford P, Chappell B. Problems that mothers’ with epilepsy experience when caring for their children. Seizure 2008;17:42–8. Thomas SV, Indrani L, Devi GC, Jacob S, Beegum J, Jacob PP, et al. Pregnancy in women with epilepsy: preliminary results of Kerala registry of epilepsy and pregnancy. Neurol India 2001;49:60–6. Beghi E, Annegers JF. Collaborative group for the pregnancy registries in Epilepsy. Pregnancy registries in Epilepsy. Epilepsia 2001;42:1422–5. Saramma PP, Thomas SV. Child rearing knowledge and practice scales for women with epilepsy. Ann Indian Acad Neurol 2010;13:171–9. Barlow A, Varipatis-baker E, Speakman K, Ginsburg G, Friberg I, Goklish N, et al. Home-visiting intervention to improve childcare among American Indian adolescent mothers: a randomized trial. Arch Pediatr Adolesc Med 2006;160:1101–7 [Electronic version]. Browne JV, Talmi A. Family-based intervention to enhance infant-parent relationships in the neonatal intensive care unit. J Pediatr Psychol 2005;30:667–77 [Electronic version]. Powell C, Helen BH, Walker S, Gernay J, McGregor SG. Feasibility of integrating early stimulation into primary care for undernourished Jamaican children: cluster randomized controlled trial. Br Med J 2004;329:89–97. Huang M, Liu C, Chi Y, Thomas K, Huang C. Effects of educational intervention on changing parental practices for recurrent febrile convulsions in Taiwan. Epilepsia 2002;43:81–6. Keane B, Waterston T, McConachie H, Towner E, Cook M, Birks E. Pilot trial of an age-paced parenting newsletter. Commun Pract 2005;78:363–5. Waterston T, Welsh B, Keane B, Cook M, Hammal D, Parker L, et al. Improving early relationships: a randomized, controlled trial of an age-paced parenting newsletter. Pediatrics 2009;123:241–7. Kolobe TH. Childrearing practices and developmental expectations for Mexican-American mothers and the developmental status of their infants. Phys Ther 2004;84:439–53.
Please cite this article in press as: Saramma PP, et al. Effect of a self-instructional module on the child rearing knowledge and practice of women with epilepsy. Seizure: Eur J Epilepsy (2014), http://dx.doi.org/10.1016/j.seizure.2014.02.006
YSEIZ-2292; No. of Pages 5 Seizure xxx (2014) xxx–xxx
Contents lists available at ScienceDirect
Seizure journal homepage: www.elsevier.com/locate/yseiz
Effect of a self-instructional module on the child rearing knowledge and practice of women with epilepsy P.P. Saramma, P.S. Sarma, Sanjeev V. Thomas * Kerala Registry of Epilepsy and Pregnancy, Comprehensive Epilepsy Care Program, Sree Chitra Tirunal Institute for Medical Sciences and Technology, Trivandrum 695011, Kerala, India
A R T I C L E I N F O
A B S T R A C T
Article history: Received 10 October 2013 Received in revised form 12 February 2014 Accepted 14 February 2014
Women with epilepsy (WWE) have poorer knowledge and skill in child rearing than women without epilepsy. Purpose: To evaluate the effect of a self-instructional module (SIM) on the child rearing knowledge (CRK) and practice (CRP) of WWE and developmental outcome of their babies. Methods: One hundred women in first trimester of pregnancy that were enrolled in to the Kerala Registry of Epilepsy and Pregnancy and consenting to participate were given a self instructional module (SIM) or a comparator booklet by random concealed allocation. Their child rearing knowledge (CRK) was assessed by a standardized protocol at entry (first trimester) and at 3–4 months postpartum. Their child rearing practice (CRP) was evaluated in third postpartum month. The developmental outcome of babies was assessed at 1 year of age as per registry protocol. Results: Eighty eight women completed this 1 year study. The CRK score was significantly higher (p = .034) for the intervention group (32.91 5) when compared to the comparator group (30.61 5) However, a corresponding improvement in CRP score was not observed for the former. Developmental outcome of 68 babies showed a positive weak correlation between CRP and developmental quotient both mental and motor. The intervention group demonstrated significant increase in their CRK. Nevertheless the results did not indicate a significant improvement in the CRP. Conclusion: The SIM improved the CRK of WWE. Nevertheless, the child rearing practices did not show corresponding improvement. ß 2014 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved.
Keywords: Child rearing Knowledge Practice Child care Parenting Development
1. Introduction About 1.3 million women in India have epilepsy.1 Several studies have addressed the maternal and fetal outcome of women with epilepsy (WWE).2–10 However, not many of them have adequately or systematically addressed the child caring and child rearing issues of WWE. Children of WWE are at risk of developmental delay, low IQ,11,12 low linguistic achievements,13 and poor scholastic performance.14 Possessing sufficient child rearing knowledge and following healthy child rearing practices are critically important for the optimum growth and development of children. Previous observational studies have shown that, WWE have poor child rearing knowledge and practice.15,16 A knowledge
gap exists in this area due to lack of specific studies targeting this issue.17,18 In order to increase the child rearing knowledge and healthy practices of WWE during pregnancy, we have developed a self-instructional module (SIM) titled ‘You and your baby – conception, labor, and infant care: a self-instructional module for women with epilepsy’. This SIM was designed to promote selflearning by pregnant WWE for safe pregnancy, confinement and optimum child rearing during infancy. The objective of this paper is to evaluate the effect of the SIM on the child rearing knowledge (CRK), child rearing practice (CRP) and infant outcome in WWE.
2. Materials and methods 2.1. Setting and sampling
* Corresponding author at: Department of Neurology, Sree Chitra Tirunal Institute for Medical Sciences and Technology, Trivandrum 695011, India. Tel.: +91 471 2524468; fax: +91 471 2524588. E-mail addresses: [email protected], [email protected] (S.V. Thomas).
The study was conducted among the WWE who were registered in the Kerala registry of epilepsy and pregnancy (KREP) as described elsewhere.16,19,20 This registry enrolls WWE in the preconception phase or during pregnancy and continues to
http://dx.doi.org/10.1016/j.seizure.2014.02.006 1059-1311/ß 2014 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved.
Please cite this article in press as: Saramma PP, et al. Effect of a self-instructional module on the child rearing knowledge and practice of women with epilepsy. Seizure: Eur J Epilepsy (2014), http://dx.doi.org/10.1016/j.seizure.2014.02.006
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monitor them as per protocol till their children are 12 years old. All newborns are examined at birth, at 3 months of age (physical examination, echocardiography, and ultrasonography of the abdomen) and at 1 year (motor and mental developmental quotient by Developmental assessment scale for Indian infants). The maternal and infant characteristics including the motor and mental development quotient of the children assessed at 1 year of age11 were abstracted from the clinical records. The KREP, operational since 1998, has more than 2000 entries. The registry has the approval of the Institutional Ethics Committee and the consent from each person at the time of enrollment in the registry. One of the investigators screened the new enrollment to this registry and identified eligible WWE who satisfied the selection criteria for this study. The inclusion criteria were: WWE should be in first trimester of pregnancy and should be able to read and comprehend the local language (Malayalam) in which the SIM was prepared. WWE who were in the preconception period, advanced stage of pregnancy (second or third trimester) or having a repeat pregnancy during the study period, were not included. 2.2. Instruments A pre-tested questionnaire was used to evaluate the child rearing knowledge of all the participants. They were then given a sealed book packet containing either the test SIM or a comparator booklet in a blinded manner. The SIM, a 56 page 1/8 dummy size booklet titled ‘You and Your baby – conception, labor, and infant care: a self-instructional module for women with epilepsy’ was written in simple question answer format, in local language (Malayalam). It was specifically developed for pregnant WWE and had validated contents. It contained two sections, each with six units, targeted toward antenatal care and infant care, respectively. The section on antenatal care consisted of the following units: regular medical check-up, balanced diet, self-care, minor disorders of pregnancy, toward hospital for delivery, and, postnatal care and contraception. The section on infant care contained the following units: growth and development, successful breastfeeding, complementary feeding, accidents and emergencies, immunization and protection, and, mother infant bonding and infant stimulation. A self-test (‘check your knowledge’) with answer keys was included at the end of each section. It was well illustrated with pictures and tables in order to increase the readability. A bookmarker with the unit titles and page numbers was also provided along with the SIM. The comparator booklet was an existing health education booklet on epilepsy in vernacular language in the Department of Neurology, Sree Chitra Tirunal Institute for Medical Sciences and Technology, Trivandrum, Kerala. This booklet was having a similar size to SIM, but its contents were in text book format and mostly related to epilepsy, clinical manifestations, medical management and first aid during a seizure. Pregnancy related matters were limited to only one page. A total of 100 booklets (fifty SIM and fifty comparator booklets on epilepsy) were used for this trial. Computer generated random numbers (1–100) were assigned to 100 identical opaque brown, sealed envelopes each containing one booklet. These envelopes were arranged serially from 1 to 100 and then handed over to the WWE according to the order of enrolment. They were instructed to open the packet and read the book at their convenience, at home. We adopted a pretest – posttest control group design for the present study. Each WWE was evaluated at enrolment for baseline knowledge and at 3 months postpartum for knowledge and practice regarding child care with the previously validated scales.21 The Baby outcomes at birth and at three to 4 months were assessed using validated ‘Baby outcome scale’: a scale which included outcome at birth (7 items, score = 15), and outcome at
three to 4 months (8 items, score = 12). A structured interview to determine the utility of the SIM/comparator booklet on epilepsy was conducted at 3 months. At the end of the study, the code was opened and the intervention group (those who received the SIM) and the control group (those who received the comparator booklet) were identified. 2.3. Statistics The statistical analyses were performed using Statistical Package for Social Sciences (SPSS) for windows version 14.0. Continuous variables were analyzed using student’s t-tests while categorical variables were analyzed using Chi square tests. The level of significance was kept as p 0.05. Pearson’s correlation was used to detect agreement between child rearing knowledge and practice scores. 3. Results Out of the 100 women who were recruited over 3 years, 88 WWE (43 in the intervention and 45 in the control group) completed this prospective study. Sixty-eight infants (33 in the intervention and 35 in the control group) were followed up at 1 year and the mental and motor development quotients were taken from the records. The WWE in the intervention and control group were comparable with regard to socio-demographic variables like age, education, occupation, religion, place of residence, type of family, the presence of elder women in the family, reading habits of health related periodicals, and standard of living index. The groups were also comparable with regard to age of onset of epilepsy, duration and type of epilepsy, seizure type, and antiepileptic drug (AED) therapy. However, their parity statuses were significantly different (Table 1). 3.1. Effect of the SIM on CRK and CRP The baseline child rearing knowledge scores of both the intervention and control group of WWE were similar (23.96 6.4 vs 23.1 6.2; p = 0.5) in all the child rearing domains. The mean post-test scores for child rearing knowledge (CRK) have improved significantly in the intervention group than the control group (32.91 5 vs 30.61 5; p = .034) (Table 2). However we did not find a significant improvement in the mean child rearing practice (CRP) of WWE in the intervention group compared to the control group (p = 0.33). 3.2. Baby outcome The outcome scores of infants in the intervention and control group of WWE were similar at birth (14.23 1.3 vs 13.87 1.3; p = 0.19) and at three to 4 months of age (10.35 1.9 vs 10.38 1.8; p = 0.94). The motor and mental developmental quotient (DQ) at 1 year also was comparable in both the groups (p = 0. 64, p = 0.78) (Table 2). While a correlation was noted between CRP and motor developmental quotient (r = 0.221; p = 0.07) as well as CRP and mental developmental quotient (r = 0.216; p = 0.08), it was not statistically significant. 3.3. Attitude of WWE toward the SIM/comparator booklet The participants displayed a significant difference in reading of the SIM or the comparator booklet on epilepsy completely. Their opinion regarding the utility and benefit of these booklets also varied significantly (Table 3). More number of women in the
Please cite this article in press as: Saramma PP, et al. Effect of a self-instructional module on the child rearing knowledge and practice of women with epilepsy. Seizure: Eur J Epilepsy (2014), http://dx.doi.org/10.1016/j.seizure.2014.02.006
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Table 1 The demographic maternal and epilepsy characteristics of the intervention group and the control group. Variables
Intervention (SIM) group
Control group
p Value
Age in years mean (SD) Age at marriage in years mean (SD) Age of onset of epilepsy in years mean (SD) Duration of illness in years mean (SD)
25.44 22.72 14.02 11.30
25.68 23.66 14.28 11.20
0.798 0.254 0.840 0.950
Educational status of women n (%) Primary school High school/higher secondary Graduation and post-graduation Technical/professional
1(2) 34(68) 11(22) 4(8)
5(10) 33(66) 10(20) 2(4)
0.293
Occupational status of women n (%) Unemployed Semiskilled/skilled Professional Others
41(82) 1(2) 4(8) 4(8)
44(88) 4(8) 1(2) 1(2)
0.222
Type of family n (%) Nuclear Extended
9(18) 41(82)
8(16) 42(84)
0.500
No. of members in family n (%) 2–4 5– 9
23(46) 27(54)
27(54) 23(46)
0.870
Presence of elder women in family n (%) Yes No
40(80) 10(20)
41(82) 9(18)
0.500
Religion n (%) Hindu Christian Muslim
37(74) 9(18) 4(8)
33(66) 11(22) 6(12)
0.661
Place of residence n (%) Urban Rural
17(34) 33(66)
11(22) 39(78)
0.133
Reading habits – health related periodicals n (%) Yes No
10(20) 40(80)
6(12) 44(88)
0.414
Standard of living index n (%) Low Medium High
18(36) 22(44) 10(20)
18(36) 19(38) 13(26)
0.737
Type of epilepsy n (%) Generalized Localization Related unclassified
18(36) 29(58) 3(6)
19(38) 28(56) 3(6)
0.860
23(46) 27(54)
22(44) 26(52) 2(4)
0.560
Type of AED therapy n (%) None Monotherapy 2 AEDs 3 AEDs
9(18) 30(60) 10(20) 1(2)
3(6) 32(64) 11(22) 4(8)
0.180
Parity status Primipara (Para 0) Para 1 Para2
25(50) 23(46) 2(4)
36(72) 14(28) 0
Type of seizure n (%) Generalized Partial unclassified
(4.7) (4.5) (5.5) (6.6)
(4.6) (3.7) (7.1) (7.1)
0.046
intervention group who read the SIM completely had expressed their opinion in a more positive way than the control group who read the comparator booklet on epilepsy (p = 0.000). 4. Discussion The setting of a KREP registry gave us the unique opportunity to prospectively study the child care knowledge and practice of WWE and evaluate the effect of a SIM on infant outcomes. Our findings
indicate that the SIM can be used as an effective instrument to bridge the gap in CRK among WWE. The intervention module, SIM has covered the entire child rearing domains particularly the importance of breastfeeding, timely starting the complementary feeds, monitoring growth and development, cleaning and protection including immunization, prevention of accidents as well as infant stimulation. It was written in the local language, easily understandable and in simple module form. The question answer style in which the content is presented
Please cite this article in press as: Saramma PP, et al. Effect of a self-instructional module on the child rearing knowledge and practice of women with epilepsy. Seizure: Eur J Epilepsy (2014), http://dx.doi.org/10.1016/j.seizure.2014.02.006
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Table 2 Child rearing knowledge (CRK) score, child rearing practice (CRP) score of WWE and outcome score of infants in the intervention and the control group. Intervention group mean (SD)
Control group mean (SD)
p Value
Baseline CRK CRK score at 3 months CRP score at 3 months
23.96(6.4) 32.91(5) 28.7(2.9)
23. 1(6.2) 30.61(5) 28.02(3.5)
0.497 0.03 0.33
Baby outcome at birth Maximum score 15
14.23(1.3)
13.87(1.3)
0.19
Baby outcome at 3–4 months Maximum score 12
10.35(1.9)
10.38(1.8)
0.94
Baby outcome at 1 year Developmental quotient motor Developmental quotient mental
86.8(33.9) 91.9(33.3)
90.8(35.4) 89.7(33.4)
0.64 0.78
Table 3 Opinion of WWE toward the SIM/comparator booklet. Parameters
Intervention group
Control group
n = 43
n = 45
F (%)
F (%)
Reading the SIM/comparator booklet Read partly 6(14.0) Read fully 37(86.0)
41 (91.1) 4(8.9)
Usefulness Not useful Very much useful
13(28.9) 32(71.1)
p Value
0.000
0.000 0 43(100)
could spark and maintain the interest in the readers. It could be taken home, conveniently read and assimilated at each individual’s convenience. It covered all the domains of antenatal care as well as child rearing during infancy. The SIM was given during early pregnancy, a period when the expectant women were very eager to learn about the changes, care and precautions during pregnancy. Reading such materials during pregnancy period would improve the knowledge in child rearing and equip them to properly handle the new maternal role. This module can also be used to practice optimum child rearing after delivery. The module is short enough that one can finish reading it in 60–90 min. The post section questions accompanying each unit are expected to create interest. The answers to these questions provide clarity and are given only at the end of the booklet to make the reader think, and avoid speculation. It is self-motivating and the answers could act as incentive to the readers. Several studies have established that planned maternal education could improve child rearing knowledge.22–24 The most challenging areas in child caring are caring for their baby outside the home and bathing.18 Some of these studies have used different teaching techniques and tested their significance in improving the knowledge of parents. Huang found that a demonstration class by a trained pediatric nurse was significantly more effective than a mailed pamphlet at improving certain parental practices related to febrile convulsions.25 In this study 86% of the WWE agreed that they had read the module completely. All women in the intervention group found the SIM very useful, and expressed positive attitude toward it. Women are likely to read materials that are important and meet their immediate needs during pregnancy. Reading such materials during pregnancy period would certainly improve their knowledge in child rearing. An age-paced parenting newsletter could be another acceptable and useful method of supporting parents in the early months of a
child’s life that could promote positive changes in parenting behavior. Though the SIM has significantly improved the mean child rearing knowledge of the intervention group, the same did not translate into a significant improvement in their mean CRP. It is important to explore the reasons why knowledge is not often translated in to healthy practices. Socio cultural factors, value systems, opinion and decisions of the influential persons in the family, peers, and several other factors may be directly or indirectly influencing the final practice or avoidance of certain practices in child care. Researchers in UK found that, 95% of mothers reported reading all or part of a newsletter provided to them, yet changes in parenting style were spontaneously reported by only 28%.26,27 An interventional study on child rearing among American Indian adolescent mothers also revealed similar pattern.22 In spite of the mother herself being quite knowledgeable about her competence to take care of the baby, the deleterious effect of some of the AEDs or actual or potential risk of seizure recurrence might restrict her ability to optimally attend to the baby. It is possible that certain unknown barriers impair the translation of increased CRK into immediate practices. In addition, CRPs are usually influenced by social customs, traditions and may reflect the aggregate attitude of the family at large especially in joint family setting. Since the intervention group had significantly larger proportion of multipara mothers, it could be possible that the CRPs already learned by the mothers previously, might have been difficult to be changed. The lack of significant improvement in child rearing practice or outcome might be due to the fact that the final observations were done during early infancy (3–4 months), a period when the child rearing was unlikely to be fully under the control of the mothers in this region of India. Many times the elder women in the family undertake the main responsibility, especially in case of WWE. This study exposes another important fact that an improvement in knowledge alone need not necessarily result in equal improvement in practice. Further studies are required to understand and modify the dynamics that resist changes in practices even when knowledge on healthy practices is available. zChild rearing demands on the mother certainly increases at later stages of infancy. As Barlow et al.22 suggested, a longer and larger trial is needed to understand the intervention’s potential to improve parenting and related child outcomes. The follow up in this study of 68 infants at 1 year showed only a minimal positive change in mental developmental quotient for those who received the SIM. There was a trend (not statistically significant) toward higher developmental outcome according to the maternal child rearing practice in this study. Kolobe28 found that maternal nurturing behaviors, parentchild interaction, and quality of the home environment were positively correlated with the infants’ cognitive development. Motor development of the child is strongly associated with the infants’ characteristics rather than with maternal child rearing practices. A SIM that can improve the child rearing knowledge of WWE has great relevance in the Indian context where there is a scarcity of epileptologists. Even when available, these specialists may not get enough time to interact with the women adequately in busy clinics. But, if made available, literate people can use the SIM as a selflearning material to improve their child rearing knowledge, thus saving specialists’ time. This self-learning material could easily be made available to pregnant WWE and or any WWE of child bearing age to improve their child rearing knowledge, in clarifying their concerns, eliminate misconceptions, change unfavorable attitudes and promote ideal child rearing knowledge and practices. 5. Limitations The impact of family support particularly the older family members of WWE was not explored in this study. Hence the true
Please cite this article in press as: Saramma PP, et al. Effect of a self-instructional module on the child rearing knowledge and practice of women with epilepsy. Seizure: Eur J Epilepsy (2014), http://dx.doi.org/10.1016/j.seizure.2014.02.006
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influence of these decision makers on the child rearing practices and the infant outcome are not available. Approximately 83% of the WWE lived in a household with elder women; therefore this area needs further exploration. 6. Conclusions A printed instrument like SIM can substantially increase the child rearing knowledge of WWE. In a literate community, the SIM is a convenient, inexpensive and easy to deliver instrument to bridge the knowledge gap that exists in this field. However, it may not automatically lead to better practices of child care, which appear to be influenced by several factors other than the precise knowledge of child care. Conflict of interest statement The authors have nothing to declare as conflict of interest. References 1. Thomas SV. Management of epilepsy and pregnancy. J Postgrad Med 2006;52:57–64. 2. Meador KJ, Baker GA, Browning N, Clayton-Smith J, Combs-Cantrell DT, Cohen M, et al. Effects of breastfeeding in children of women taking antiepileptic drugs. Neurology 2010;75(November (22)):1954–60 [Epub 2010 November 24] PubMed PMID: 21106960; PubMed Central PMCID: PMC 3014232. 3. Thomas SV. Management of epilepsy in pregnancy. Neurol India 2011;59:59–65. 4. Harden CL, Hopp J, Ting TY, Pennell PB, French JA, Hauser WA, et al. Practice parameter update: management issues for women with epilepsy – focus on pregnancy (an evidence-based review): obstetrical complications and change in seizure frequency: report of the Quality Standards Subcommittee and Therapeutics and Technology Assessment Subcommittee of the American Academy of Neurology and American Epilepsy Society. Neurology 2009;73:126–32 [Epub 2009 April 27] Review. PubMed PMID: 19398682. 5. Artama M, Auvinen A, Raudaskoski T, Isojarvi I, Isojarvi J. Antiepileptic drug use of women with epilepsy and congenital malformations in offspring. Neurology 2005;64:1874–8. 6. Holmes LB, Harvey EA, Coull BA, Huntington KB, Khoshbin S, Hayes AM, et al. The teratogenicity of anticonvulsant drugs. N Engl J Med 2001;344(April (15)):1132–8. PubMed PMID: 11297704. 7. Pennell PB. Pregnancy in women who have epilepsy. Neurol Clin 2004;22:799– 820. 8. Yerby MS, El Sayed YY. Pregnancy risks for the woman with epilepsy. In: Morrell MJ, Flynn KL, editors. Women with epilepsy – a handbook of health and treatment issues. Cambridge: Cambridge University Press; 2003. p. 203–14. 9. Harden CL, Meador KJ, Pennell PB, Hauser WA, Gronseth GS, French JA, et al. Practice parameter update: management issues for women with epilepsy – focus on pregnancy (an evidence-based review): teratogenesis and perinatal
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