|Year : 2015 | Volume
| Issue : 1 | Page : 53-57
Psychosocial issues of parents of children with cleft lip and palate in relation to their behavioral problems
P Thamilselvan1, M Suresh Kumar2, Jyotsna Murthy3, Manoj Kumar Sharma1, N Rajeev Kumar4
1 Department of Clinical Psychology, NIMHANS, Bengaluru, Karnataka, India
2 Department of Clinical Psychology, Sri Ramachandra University, Chennai, Tamil Nadu, India
3 Department of Plastic Surgery, Sri Ramachandra University, Chennai, Tamil Nadu, India
4 School of Behavioral Sciences, Mahatma Gandhi University, Kottayam, Kerala, India
|Date of Web Publication||4-Feb-2015|
M Suresh Kumar
Department of Clinical Psychology, Sri Ramachandra University, Porur, Chennai - 600 116, Tamil Nadu
Source of Support: Smile Train India for providing the financial aid to
purchase the materials needed for the study., Conflict of Interest: None
Objective: The objective was to identify the behavioral problems if any, in children with cleft lip and palate (CLP) and its relationship with their parents' quality-of-life (QOL) and negative emotions. Design: A cross-sectional explorative study. Setting: Both inpatient and outpatient department of Cleft Care Center, in the hospital. Patients: Participants were 50 parents of CLP children in the age group of 1-5 years. Main Outcome Measures: Outcome measures are QOL, Depression, Anxiety, Stress Scale-21, and child behavior checklist. Results: There is a significant positive relationship between internalizing problems such as emotional reactivity, somatic complaints, withdrawn behavior, and on the stress. There was a positive relationship between attention problem of children with parental depression and stress and also between internalizing and externalizing behavioral problems with various aspects of QOL. Conclusion: This study has implications in understanding how CLP children's behavioral problems influence the parent's QOL.
Keywords: Cleft lip and palate, psychosocial issues, emotional factors and behavioral problems, quality of life
|How to cite this article:|
Thamilselvan P, Kumar M S, Murthy J, Sharma MK, Kumar N R. Psychosocial issues of parents of children with cleft lip and palate in relation to their behavioral problems. J Cleft Lip Palate Craniofac Anomal 2015;2:53-7
|How to cite this URL:|
Thamilselvan P, Kumar M S, Murthy J, Sharma MK, Kumar N R. Psychosocial issues of parents of children with cleft lip and palate in relation to their behavioral problems. J Cleft Lip Palate Craniofac Anomal [serial online] 2015 [cited 2019 Sep 19];2:53-7. Available from: http://www.jclpca.org/text.asp?2015/2/1/53/150749
| Introduction|| |
The condition of cleft lip and palate (CLP) occurs when a facial structure improperly closes during the developmental phase. Parents often feel upset when they first see their baby with CLP, which creates significant emotional turmoil in parents. In the long run, CLP can disturb a child's overall psychological makeup by affecting one's self-esteem, social skills, and behavior.  These disturbances often occur due to various internal factors such as their inability to express their emotions properly or due to certain other interpersonal and social factors such as teasing and avoidance from peer and other family members. When they have some belief that they are socially incompetent or incapable, their natural reaction is either to withdraw themselves or to become behaviorally over-expressive. These are known as the internalizing or externalizing behavior of children.
The type of behavior that is most commonly exhibited by CLP children still remains as an unexplored area in the field of psychology or in CLP, but many studies suggest that there is a positive relation between turning from internalizing to externalizing behavior as the age of the child progress. Some studies done with elementary school children show the presence of inhibited kind of behavior, that is, internalizing behavior when compared with the unaffected kids of the same age.  On the contrary, Richman found that the externalizing behaviors were more prominent in children with cleft.  After a long gap in the scientific field, one recent study reevaluated the presence of behavior problems in these children and confirmed the existence.  As such these behavioral problems along with other issues definitely result in the burden for its caregivers and becomes a huge stress for them.
The amount of stress that the parents go through in dealing with CLP children is immense, especially in handling very younger one. The problems start with the concern of feeding them to handing over the responsibility to others for care. Moreover, the kind of embarrassment they have undergone during the initial period is often reported to be a black mark for many parents. On the top, such behaviors often augment or create significant fall in their overall quality-of-life (QOL). In the light of these literatures, the current study will help us to identify the predominance of behavioral problems found in these children and how they relate to the overall QOL of parents of younger children.
| Materials and Methods|| |
The current study included 50 parents of children with CLP (who are receiving surgical intervention and/or follow-up consultation for subsequent surgery or for speech-related further treatments) from the Cleft Care Center, Department of Plastic Surgery, of a multispecialty medical college located in the urban area in Chennai served as the participants. Children diagnosed with autism, mental retardation, cerebral palsy, and seizures were excluded and special care was taken to exclude those who are having debilitating physical conditions to avoid the confounding effect on parents caregiving burden and thereby their QOL. The sample was collected using the randomized sampling technique. Age of the children ranged from ½ to 5 years. The subjects were provided:
- Sociodemographic data sheet,
- QOL instrument for parents with children having CLP,
- Depression, Anxiety, Stress Scale (DASS), and finally,
- Child behavior checklist (CBCL). A small description of these test materials is provided herewith.
Sociodemographic data sheet which is specially designed for the study to gather participant information included name of the parent and their children (which was optional), age and sex of parent and children, their education, and other related demographic and clinical details. The additional information such as family history and personal history of the participants were also elicited. QOL questionnaire was developed to measure the quality of life of parents of children with CLP.  The tool consists of 42 items developed with the aim of assessing the QOL of parents in the light of caregiving burden. The tool is a five-point scale ranging from 0 to 4 (in which "0" indicates "never" or "do not know"; "1" indicating "strongly disagree"; "2" indicates "disagree"; "3" indicating the statement as "agree"; and finally "4" means "strongly agree"). The scale measures various areas of concern, such as physical, emotional, social, and school functioning. The domains of QOL instrument included its sub domain in accordance with the guidelines given in the WHO guideline for preparing QOL scales. The Guttman split-half reliability coefficient score of 0.91 indicating a very high degree of internal consistence of the domains and items.
The negative emotions of parents were assessed using DASS-21 scale, which was developed by Lovibond and Lovibond.  The DASS is a 21-item instrument measuring current ("over the past week") symptoms of depression, anxiety, and stress (it is a quantitative measure of distress of distress). Each of the three scales consists of seven items which are responded to using a 0-3 scale, where 0 = Did not apply to me at all, and 3 = Applied to me very much, or most of the time (range of possible scores for each scale is 0-42). It is not a categorical measure of clinical diagnosis. Emotional syndromes such as depression and anxiety are intrinsically dimensional - they vary along a continuum of severity (independent of the specific diagnosis). Hence, the selection of single cutoff scores to represent the clinical severity is necessarily arbitrary. A scale, like the DASS can lead to a useful assessment of disturbance, for example, individuals who may fall short of a clinical cutoff for a specific diagnosis can be correctly recognized as experiencing considerable symptoms and as being at high risk of further problems. However, for clinical purposes, it can be helpful to have "labels" to characterize the degree of severity relative to the population. Thus, the specific cutoff scores have been developed for defining mild/moderate/severe/extremely severe scores for each DASS scale. The scale's Cronbach α was 0.96, which suggests an excellent internal consistency.
The CBCL was developed by Achenbach and Rescorla. , The tool has two versions according to the children's age. The first version assesses preschool children within the age range of 1½-5 years,  and the second version is for children in between 6 and 18 years which consists of 113 items.  The present study used the CBCL (1½-5 years). It is completed by parents, parent-surrogates, and others who see children in the family - like contexts. Parents have to rate the frequency of problem behavior on a three-point scale from 0 to 2. The test measures the presence of anxiety, depression, withdrawn, somatic complaints, social problems, thought problems, attention problems, rule - breaking behavior, aggressive behavior, and other problems. The test will be administered individually. The test requires a time nearly 45-60 min to complete.
The participants were selected on the basis of inclusion criteria from the outpatient as well as from the inpatient department of Cleft Care Center, Department of Plastic Surgery on a randomized basis. After the selection, the participants were provided with detailed information regarding the nature of the study and expectations of researchers in detail and obtaining their willingness by signing an institute approved informed consent from parents. As an initial assessment of the study, they were asked the details mentioned in the sociodemographic data sheet and also supplied with other outcome measures of the study such as the QOL, DASS-21, and CBCL. The data, thus collected were subjected to analysis.
| Results|| |
In order to test the hypothesis, the following statistics were used for the present study. The demographic details were analyzed using the methods of Chi-square test for categorical variables and descriptive statistics for continuous variables. To see the relationship of QOL, negative emotions in parents and behavioral problems in children, the Pearson's product moment correlation was applied. The rationale for using the descriptive statistics was to derive the mean and standard deviation of some of the demographic variables. A correlation analysis was performed to see the relationship between the psychosocial issues of parents of children with CLP and children's behavioral problems and also how these two are related to the QOL parents of children with CLP.
[Table 1] shows certain demographic details of the participants such as the mean age and birth weight of the children. The study was mainly focused on children within 1-5 years and the obtained mean of 3.06 ± 1.07 shows an exact sample inclusion. With regard to the birth weight, a mean birth weight of 2.86 ± 0.48 kg, comes under the average birth weight of Indian children.  Other demographic, family, and clinical details of the children are given in the same table; further, the frequencies and percentages are divided according to cleft lip, cleft palate, and both. The gender-wise analysis shows that the male (31, 62%) outnumbered female (19, 38%). Further, the distribution of children attending and not attending school are almost equal in number. As far as the residence and family type is concerned, half of the participants are from urban 28 (56%) area and majority coming from nuclear family 34 (68%). Most of the children were born out of a nonconsanguineous union 36 (72%) without any significant medical history 47 (94%). Prenatal complications among the participants were reported by a minority (12%). The large percent of the sample had a normal delivery 35 (70%) and most of them having an immediate birth cry.
[Table 2] summarizes the relationship between negative emotions such as depression, anxiety, and stress of parents with the exhibited behavioral problems by the children. There was a significant positive relationship between internalizing problems such as emotionally reactive, somatic complaints, withdrawn behavior of children with the parental stress. The externalizing problems, mainly the attention problems were found to be significantly related to parental depression as well as with stress.
|Table 2: Relationship between emotional variables such as depression, anxiety, and stress with behavioral problems seen in CLP children|
Click here to view
[Table 3] summarizes the relationship between QOL of parents and behavioral problems exhibited by children. There was a significant positive relationship found between children's internalizing and externalizing problems with parent's QOL. Among the QOL variables, it was found that daily activities, which is a variable measures the interruption in the daily activities of parents, was related to many internalizing problems such as emotional reactiveness, anxiety and depression, somatic concern, and withdrawal behavior and the same was also related to aggressive behavior of children. Another QOL variable, appearance (concern of parents regarding the facial appearance of their children) was found to be related to emotionally reactiveness, anxious/depressed and withdrawn tendency of internalizing behavior. Aggressive behavior of children was also found to be related to the concern of facial appearance of children. Family and social aspects of QOL variables, such as family interaction, friends and peers, and school function was found to be related to all the internalizing and externalizing behavior except appearance.
| Disscussion|| |
The assessment of the QOL of caregivers in any illness seems to be very important as it is directly related to caregivers burden. Identifying caregiver burden and providing better support for caregivers will in turn enhance the process of caregiving more successful.  The present study reveals the relationship between behavioral problems of cleft children (internalizing and externalizing behavioral problems) and QOL of parents. It also explored to assess the psychosocial issues in parents with CLP. There is evidence, though minimal, regarding the existence of behavioral problems in these CLP children.  If this theoretical notion is correct, it is worthwhile to study what is the pattern of behavioral problems in younger kids as well as whether the presence of these behavioral problems results in negative emotions in parents. The internalizing problems identified in the current sample is presented with often becoming easily disturbed by the change, panic, mood swings, upset by new things, worrying and withdrawn which are consistent with such kind of work in this area. , The study result also showed a positive relationship between some of the behavioral problems in children and parental negative emotions such as depression and stress in parents. The presence of such relationship may often create problems for parents. The behavior problems explored in the current study are internalizing one, which is difficult to identify as it occurs without adequate expression or communication. The presence of these internalizing problems especially in younger children possibly may augment the exhibition of expressed emotions such as over-involvement or anxiety about the child in parents. ,, Such over involved emotional expression often turns against the overall quality of relationships, which is an important aspect of growing child-parent relationship.  Similar study also identified that those parents of such children show over involvement in the protection or taking care of such children.  But, till recently it was not clear to the scientific community whether such expressed emotions are evolved as a result of caregiving or due to the demanding behavior from children. Providing an opportunity or devising an intervention protocol to help the children to express their emotions or to train the parents to express emotions in a more positive and adaptive way might help the parents to reduce their stress and thereby to improve their QOL. Improvement in the QOL has a direct relationship with better patient care as noted by Murthy.  Increased frequency of somatic complaints by the CLP children also mounts the stress of the parents as far as the current study is concerned.
The present study also found that there is a significant positive relationship between the externalizing problems exhibited by children has significant relation with parental negative emotions, especially depression and stress. Similar consistent findings has been very well established in previous studies done in normal children. , The study reveals that these problems may lead the parents to worry and feel sad. From these results, it can be postulated that intervention to improve attention of the children will help the parents to cope better with their emotional problems of depression and stress. These findings are inconsistent with that of Wu et al.  They found that the children with cleft of lip and/or palate have increased frequencies of behavioral problems in comparison with their normal control, and it is the male gender who is having more behavioral problems than the female.
The study further found a significant relation between QOL variables and negative emotions such as depression, anxiety, and stress in parents. The study found that difficulties contributed by the physical conditions such as lack of satisfactory diet, decreased speech or conversational skills, difficulty in getting along with other children and family members induce stress in parents' which reflects in their negative emotions such as depression, anxiety, and stress. The study is consistent with similar findings that the factors directly affecting the psychological development of the child born with a CLP include possible speech and language disorders, facial disfigurement, and hearing loss. , The current findings may be considered significant for psychological interventions like cognitive behavioral therapy for parents as they showed stress and depression and to provide special training for children in speech, personal and interpersonal skills.
| Conclusion|| |
We found a significant positive relationship between both internalizing problems and externalizing problems exhibited by the children with various negative emotions such as depression and stress in parents. These behavioral problems either its internalizing or externalizing have an impact on parents overall QOL indicating the need to extend the psychological services to them. Also for the children who presented with internalizing behavioral problems warranted the need to initiate psychological interventions for their psychological disturbances in addition to the concern with their body dysmorphism to prevent related school dropouts. Inclusion of children aged 5 years and above may yield valuable information to understand them better and to initiate more help for them as well as to their parents.
| Acknowledgments|| |
The authors are thankful to Smile Train India for providing the financial aid to purchase the materials needed to carry out this study. Special thanks to Mrs. S.M. Vasanthakumari, Head of the Department for providing liberty and autonomy to carryout of the study and to Ms. Divya Merciline, Clinical Psychologist, Department of Clinical Psychology for helping in the process of proofreading and finalizing the article. Thanks to all staff in the Department of Plastic Surgery especially to Mr. Christy for logistic arrangements to carry out this study. Finally, we wish to provide our indebted thanks to all the participants.
| References|| |
Hunt O, Burden D, Hepper P, Johnston C. The psychosocial effects of CLP: A systematic review. Eur J Orthod 2005;27:247-85.
Harper DC, Richman LC, Snider BC. School adjustment and degree of physical impairment. J Pediatr Psychol 1980;5:377-83.
Richman LC. Behavior and achievement of cleft palate children. Cleft Palate J 1976;13:4-10.
Wu ZY, Zhang Y, Chen LQ. A study of Rutter behavior problems in school aged children with cleft lip and/or palate. Shanghai Kou Qiang Yi Xue 2008;17:348-50.
Kumar SM. Instrument of quality of life questionnaire of children with cleft lip and palate. Souvenir of International Conference of Plastic Surgery. Unpublished; 2011.
Lovibond SH, Lovibond PF. Psychology Foundation (Monograph). Manual for the Depression Anxiety Stress Scales (DASS). Vol. 35. Sydney: Psychology Foundation; 1995. p. 79-89.
Achenbach TM, Rescorla LA. Manual for the ASEBA Preschool Forms and Profiles. Burlington, VT: University of Vermont Department of Psychiatry; 2000.
Achenbach TM, Rescorla LA. Manual for the ASEBA School-Age Forms and Profiles. Burlington, VT: University of Vermont, Research Center for Children, Youth, and Families; 2001.
Mathai M, Jacob S, Karthikeyan NG. Birthweight standards for south Indian babies. Indian Pediatr 1996;33:203-9.
Kumar SM, Mathuranath PS, George A. Burden assessment of caregivers of dementia patients. Antiseptic 2012;109;271-4.
Hamada S. The institutionalization of developmental psychology and individualization of human beings. J Dev Psychol 2009;20:20-8.
Achenbach TM. Integrative guide for the 1991 CBCL/4-18. Burlington: Department of Psychiatry, University of Vermont. 1991.
Achenbach TM, Edelbrock. Manual for Child Behavior Checklist (CBCL). Burlington: University of Vermont, Department of Psychiatry; 1983.
Turner SR, Thomas PW, Dowell T, Rumsey N, Sandy JR. Psychological outcomes amongst cleft patients and their families. Br J Plast Surg 1997;50:1-9.
Murthy J. Management of cleft lip and palate in adults. Indian J Plast Surg 2009;42 Suppl:S116-22.
Richman LC, Millard T. Brief report: Cleft lip and palate: Longitudinal behavior and relationships of cleft conditions to behavior and achievement. J Pediatr Psychol 1997;22:487-94.
[Table 1], [Table 2], [Table 3]