Health & Medicine

A Preliminary Study on the Social and Emotional Experiences of Parents of Children with the Cleft Lip and Palate

Written by Teoh Hsien-Jin, Woo Pei Jun, Cheong Sau Kuan & Neo Ee Lynn
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    A PRELIMINARY STUDY ON THE SOCIAL AND EMOTIONALEXPERIENCES OF PARENTS OF CHILDREN WITH CLEFTLIP AND PALATE TEOH HSIEN-JIN Sunway University CollegeNo. 5, Jalan Universiti, Bandar Sunway46150 Petaling Jaya, Selangor Darul EhsanTel: +60(3)74918622 Ext. 3837Fax: +60(3) WOO PEI JUNCHEONG SAU KUANNEO EE LYNN Sunway University College ABSTRACT There are very few studies that describe the emotional and social experiences of parents of children with cleft lipand/or palate who are undergoing treatment. To understand these circumstances, 34 parents of children withcleft lip and/or palate were surveyed to find out about the parents’ social and emotional experiences of havingchildren with this physical disorder. The research was carried out using structured questionnaires that parentscompleted during a support group meeting. The questionnaires included questions on the reactions of peopletoward the child, parents’ emotional reactions, social support, coping strategies and resources used. Results of the study indicated that parents do need some assistance during the early stages of treatment. Furthermore,pediatricians play a very important role in the follow-up of treatment, empowerment of parents, anddissemination of information on the child’s condition. Contrary to much speculation, the parents reported thatthey are generally not stigmatized, and took a proactive approach towards finding out information about thedisorder, and also about caring for their children. The study concluded by indicating that future studies wouldneed to have larger samples, span a wider age groups, focus on the children’s first 12 months, and also theirexperiences when they begin to attend school.Key words: cleft lip and palate, parents, children, social experiences, coping. INTRODUCTION When children are born with physical deformities, their parents generally have negativefeelings and emotions. Medical staff often comment that, in the case of cleft lip and palate,the parents often also worry that the disorder may be caused by something that they havedone, and also eventually suffer a stigma from their extended families and communities.However, much of this information consists of comments that medical staff heard about onthe wards, and there has not been much systematically collected information on theseexperiences. Thus, the purpose of this study is to systematically document the experiences  Sunway Academic Journal 5 83of parents of children of cleft lip and palate. It is hoped that the information obtained wouldprovide health care providers with more information on the social experiences and copingstrategies of this group of parents, and thus the information could be used to assist parents,who are having difficulty coping, cope in a better manner.The literature review initially describes the medical condition called cleft lip andpalate, and provides some description of what related studies have observed on how parentsadjust and cope with their children’s medical condition. The review also examines somefindings that examine the mental health problems experienced by children with cleft lipand/or palate.Children with cleft lip and palate have faces which are partially developed andstopped in the midline facial area. This usually happens during the first trimester (Felix-Schollaart, Hoeksma, Van de Velde, Puyenbroek, & Prahl-Andersen, 1992). The cleft lipmay be unilateral or bilateral and may involve the bones of the upper jaw and/or upper gumridge and also the lips (Speltz, Endriga, Fisher, & Mason, 1997). The clefts can occur in thehard or soft palate or both (Speltz et al., 1997).Many studies indicate that parents of children born with medical deformitiesexperience a degree of psychological distress. This assumption has been documented inseveral studies that show that a child’s illness seems to, very quickly, affect and change theirparents’ psychological well-being (Azarnoff, 1984; Miles, Carter, Spincher, & Hassanein,1984; Rothstein, 1980).Whilst not many studies have been conducted on the emotional effects of parents of children of cleft lip and palate, several studies have been carried out on parents of childrenwith other medical conditions. In a study of Korean mothers’ psychosocial adjustment totheir children’s cancer, Han (2003) observed that maternal psychosocial adjustment wasaffected by their stress, coping with the illness, social support and time since diagnosis. Interms of stress, the more stress the mothers experienced, the poorer their psychosocialadjustment. Mothers of children with cancer were better adjusted when there were morepositive coping strategies to the illness, and also social support. In addition, it was notedthat mothers tend to be more distressed and poorly adjusted when they were first told abouttheir children’s cancer.Children’s medical conditions tend to affect parents’ adjustment. Beaumont (2005)found that mothers, of children with clefts, who were unprepared for the birth of a child withundiagnosed cleft experienced more grief, whereas mothers who had a child and whosebaby had been diagnosed with a cleft, whilst the fetus was still in the womb, tended to bemore positive and were not so shocked at the birth.Whilst parents feel distressed upon finding out their children’s medical conditions,this distress decreases over time. Wong and Chan (2005) found that Chinese parents wouldfirst express initial shock and disbelief upon learning their children’s illness. However, theparents would quickly accept the situation as fated, and eventually the distress woulddecrease. To help themselves cope, parents would seek information and emotional support.Parents who worry about their child’s condition may experience interpersonalproblems. During the ordeal, studies indicate that parents of children with a medicalcondition try to cope, but often have problems with social support. Lai and Salili (1997)carried out a study on 90 Chinese mothers with Hepatitis-B-carrying children aged from 3 to7 years old. The study observed that these parents adopted coping strategies that involveddepending more on themselves, facing the reality of the situation and solving their own  Sunway Academic Journal 5 84problems. However, these parents reported that they were not satisfied with the socialsupport provided by friends. In addition to this, they also reported not having a clear senseof purpose in life when compared with parents who did not have ill children.The studies on parents of children with medical problems suggest parents of children with cleft lip and palate would probably experience some similar adjustmentproblems. Some of these would probably be attributed to the shock of finding out about thediagnosis, and subsequently attempting to cope in a variety of negative ways.Given that there are not many studies on the experiences of parents of children withcleft lip and/or palate, we could refer to studies that examine experiences of parents withchildren suffering from a medical condition. During the ordeal of coping with a child’smedical condition, parents go through a variety of social experiences. Some of these maybe helpful, others may not be and may in fact contribute to additional stress. Jackson,Antonucci and Gibson (1991) documented a number of social interactions where parentsderive their coping strategies from. These include support from family, assistance frommultidisciplinary team in the clinic, and contact with other parents who are in a similarsituation. These social interactions eventually affect the parents’ ability to focus on thepositive aspects of the situation, their self-efficacy, and commitment to and love for thechild.   Some studies indicate that not having enough information on the child’s medicalcondition leads to an increase in the parents’ distress. Sadler (2005) interviewed nurses whoworked with parents with cleft lip children and found that after the diagnosis, parents wereleft confused, tense, isolated and vulnerable. Mothers had limited information and supporton how to breastfeed the cleft-lip babies. The interviews also indicated that parents’responses may differ. Whilst some parents were surprised and overwhelmed and haddifficulty coping, other parents still tried to gather information and wanted to talk abouttheir child’s problems.   Given the physical deformities that children with cleft lip and palate have, it can beassumed that these children may experience social and mental health problems. Severalstudies have indicated that children with cleft lip are more socially withdrawn and inhibitedespecially in the classroom (Richman, 1983, Richman & Harper, 1979; Richman & Millard,1997). In addition to this, there are indications that these children tend to have lower self-concept when compared with their developing peers who do not have cleft lip or palate(Broder, Smith, & Strauss, 1994; Broder & Strauss,1989; Kapp-Simon,1986).The assumption that children of cleft lip and palate have more mental healthproblems, when compared with their peers does not seem to be consistent across all studies.In a study that consisted of 86 adolescents, aged between 16 and 20 years old, Persson,Aniansson, Becker and Svensson (2002) found that those born with cleft lip and palate hadnormal or higher self-concept, when compared with a control group. These results areconsistent with other studies that have found similar findings (Kapp-Simon, Simon, &Kristovich, 1992; Leonard, Brust, Abrahams, & Sielaff, 1991; Richman, 1983; Richman,Holmes, & Eliason, 1985).The review indicates that whilst parents of children with cleft lip and palate doappear to have some emotional difficulties, there are some inconsistencies in the findingsabout whether children with cleft lips and/or palate do have more mental health problems.Perhaps, the way these children cope may have something to do with the manner in whichtheir parents cope. Given these findings, the main purpose of this study is to understand the  Sunway Academic Journal 5 85experiences of parents when they have a child with cleft lip or palate. The research questionis quite simple, involving a detailed examination of the reactions, coping strategies,resources and social support that these parents experienced and used. Results obtained mayhelp to shed some light on the various positive coping strategies that these parents have usedto cope. METHODOLOGYResearch Design The design used in this study was a single group cluster sample, and data was obtainedusing survey methodology. Subjects The subjects of this study consisted of 34 parents of children with cleft lip and/or palate.The parents had children whose ages ranged from between 3 months and 180 months (i.e.,15 years old) with mean age of 47.8 months (i.e., 3 years 9 months). Racially, the sampleconsisted of 26 (76.5%) Malays, 6 (17.6%) Chinese, 1 (2.9%) Indian and 1 (2.9%) non-Malay Bumiputera. In terms of religion, there were 27 (79.4%) Muslims, 5 (14.7%)Buddhists, 1 (2.9%) Hindu and 1 (2.9%) Christian. In terms of the children’s diagnosis, thediagnosis included 5 (14.7%) cleft lip only, 5 (14.7%) cleft palate only, 22 (64.7%) withboth cleft lip and palate, and others 2 (5.9%). Measurement Instrument The aims of the study generally focus on finding out about the social and emotionalexperiences of parents of children with a cleft lip and/or palate. The measurementinstrument consisted of 60 questions that were grouped into six sections (see Appendix).The sections are as follows: ã   Part A: Demographic Information ã   Part B: How do people generally react to your child? ã   Part C: How did you feel when you found out that your child had cleft palate or lip? ã   Part D: How did you cope with your child’s condition? ã   Part E: What resources did you turn to for help? ã   Part F: General Open-Ended QuestionsApart from the questions in Part F, all the questions have answers which are of amultiple-choice response format. As there are no scales that specifically examine the
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