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* Department of Genetics, Magee-Womens Hospital, Pittsburgh, Pennsylvania
Department of Behavioral Sciences, School of Dental Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania
Division of Oral Biology, School of Dental Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania
|| Department of Human Genetics, Graduate School of Public Health, University of Pittsburgh, Pittsburgh, Pennsylvania
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ABSTRACT |
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 TOP ABSTRACT METHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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Methods. The study used a self-administered questionnaire. Study participants were the biological parents of children who had cleft lip and/or palate and were seen in the University of Pittsburgh Cleft Palate-Craniofacial Center.
Results. Results revealed that parents wanted informing health professionals to be in greater control of the informing conversation, to show more caring and confidence, to show more of their own feelings, to give parents more of an opportunity to talk and show feelings, to make a greater effort to comfort parents, to provide more information, to initiate more of a discussion about the association between clefts and mental retardation/learning disabilities, and to provide more referrals to other parents during the informing interview. A positive association between the degree to which parents reported knowing the health professionals and reported satisfaction was identified for 10 dimensions of health professional behavior.
Conclusions. Parents are dissatisfied with several aspects of informing interviews for cleft lip and/or palate. The results of this study suggest ways to improve informing interviews for oral-facial clefts and other congenital anomalies.
Key Words: informing interview • parental satisfaction • cleft lip • cleft palate
Health care professionals often have the responsibility of giving individuals adverse information about their own health or that of family members. The information conveyed and the manner in which it is delivered are collectively termed the "informing interview." Informing interviews that occur in the prenatal or immediate postnatal period provide parents with medical information about their unborn or newborn children. These types of interviews often occur as the result of a child’s having a genetic condition, a syndrome or sequence, developmental delay, or a congenital defect.
The birth of a child who has a genetic condition, a syndrome, or a congenital anomaly is often a shocking and traumatic experience for the parents of that child.1–4 Dar et al1 called the time immediately after the birth of a child with cleft lip and/or cleft palate a time of "severe emotional crisis" for the parents of that child. Such emotionally overwhelming experiences can render parents less able to understand and cope with factual information presented.2
Parental feelings after the birth of a child who has mental retardation have been described as "chronic sorrow"5 and those of parents of physically disabled children as "chronic disappointment."6 Such parents grieve for the loss of the child that they had wanted and expected,3 and their experiences and feelings are further complicated by their need to accept and adapt to a child with characteristics that they had not anticipated and for which they had not prepared.7 Parents may also experience feelings of guilt and failure because their child does not meet their desires and expectations.4,8,9
Studies have consistently shown that certain aspects of an informing interview have long-term effects on a family’s ability to accept and adjust to a diagnosis9–12 and on the relationship that parents build with their affected children.11–14 Bocian and Kaback10 have gone as far as to call the initial informing conversation "the most critical encounter" in developing parental coping and adjustment abilities. In turn, parental acceptance of and adjustment to an individual child has a profound impact on that child’s psychological and social development.8,15,16
The informing interview also provides the opportunity for the acceptance and adjustment processes to be positively influenced.10,17,18 Garwick et al18 emphasized that an effective informing interview is of great importance in the development of a cooperative relationship between families and health care providers. The person responsible for delivering information to parents plays the primary role in determining whether the general experience will be positive or negative.2,19
The recognized importance of the informing interview has led to a number of studies conducted to identify the relative importance of specific components of the interview. Several researchers initially suggested that dissatisfaction with the informing process is inevitable.20,21 However, other studies have provided evidence that parental dissatisfaction is not an absolute result of the informing process.12,22
Differences between health professionals’ perceptions of parental preferences for informing interviews and actual parental preferences exist.23 This study was conducted to evaluate how parents of children who have cleft lip and/or palate remember and evaluate the experience of being informed about their children’s oral-facial clefts. The primary objectives of the study were to 1) assess parental satisfaction with these informing conversations and 2) identify potential areas for the improvement of informing interviews for cleft lip or palate and other congenital anomalies.
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METHODS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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Sample characteristics are shown in Table 1. The majority of respondents were white (93%), and more than two thirds had at least some post-high school education (66%). All but 1 of the respondents were female. The majority of parents were between 25 and 40 years of age (69%). Most of the children were 6 years old or younger (58%). The majority of children had cleft lip with or without cleft palate (61%), whereas the rest of the children had cleft palate only. 
2 and Fisher exact test analyses showed that the study sample was representative of the population of individuals who attended appointments at the center during the period of this study with respect to race, child age, and child cleft diagnoses (.1122 
P .7112).
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Statistical Methods
Parental experiences and preferences with regard to the 11 dimensions of health professional behavior were recorded and analyzed using a 5-point Likert-type scale. Paralleling the analyses of Strauss et al,17 these variables were recoded into 3- and 2-point scales for some analyses. The questionnaire also included open-ended questions, which were reviewed and summarized and are reported anecdotally.
Wilcoxon matched-pairs signed ranks (S) analyses24 were performed to test for differences between experiences and preferences. 2 analyses24 were performed to test for relationships between how well parents reported knowing the informing professional at the time of the interview and their reported experiences with the 11 dimensions of health professional behavior. P < .05 for both types of analyses was considered statistically significant.
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RESULTS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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Information Management
The majority of parents believed that the informing professional took little time "getting to the point" in conveying information (64%). Almost one half of respondents reported that a high amount of information was provided (45%), whereas approximately one third reported that a low amount of information was provided (32%). The majority of parents believed that the informing professional spent little or no time discussing the possibility of mental retardation or learning disabilities (68%).
Professional Attributes
Many of the parents reported that their informant showed a high level of caring (64%), confidence (71%), and feelings (55%). However, fewer than one third of parents received referrals to other parents of children with clefts (32%).
Parental Preferences for an Informing Interview
Elements of Interaction
The majority of parents reported wanting the health professional to control the informing conversation to a high degree (80%), to give the parents opportunity to talk (98%) and to show feelings (98%), and to make a great effort to help the parents feel better (88%).
Information Management
Most parents expressed preference for the informing professional to "get to the point" quickly in conveying information (74%). Most parents also wanted the professional to give a great deal of information (91%). Fewer parents but still a majority wanted the informant to spend time discussing the possibility of mental retardation or learning disabilities (66%).
Professional Attributes
Almost all parents reported a desire for the health professional to show both caring (100%) and confidence (98%) during the informing interview. The majority of parents also wanted the professional to show his or her own feelings (65%). Most parents reported a desire for referrals to other parents of children with clefts (80%).
Comparison of Parental Experiences and Preferences
Wilcoxon matched-pairs signed ranks analyses were used to test the statistical significance of differences between parental experiences and preferences with regard to the informing interview. The results of these analyses are shown in Table 2. Significant differences (P < .05) were identified for 10 of the 11 comparisons.
Parents wanted informing professionals to be in greater control of the informing conversation, to give them more of an opportunity to talk and show feelings, and to make a greater effort to make them feel better. They expressed a desire for health professionals to provide more information than was actually given and to have more of a discussion about the possibilities of mental retardation and/or learning disabilities during the initial informing interview. Parents also expressed a desire for health professionals to show increased caring and increased confidence and to show more of their own feelings. In addition, parents were significantly more likely to desire referrals to other parents of children with clefts than they were to have received such referrals. No difference was found between parents’ reported experiences and preferences with regard to the amount of time it took the health professional to "get to the point" during the informing interview.
Association Between the Relationship With the Informing Professional and Reported Experiences
2 analyses were performed to test for relationships between how well parents reported knowing the informing professional at the time of the informing interview and their reported experiences. The results of these analyses are shown in Table 3. Parents who believed that they knew the informing health professional very well at the time of the informing interview were more likely to report the highest possible level of experience with each dimension of health professional behavior during the informing interview. These findings were statistically significant (P < .05) for all measured dimensions, with the exception of the amount of time it took the health professional to convey information.
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"I did have problems with the staff at the hospital where I delivered—they were unfamiliar with these types of problems, and I did not feel that they had the best interest of my child in hand. I felt very confused and frustrated." —23-year-old mother of a 7-year-old daughter with cleft palate."Health care professionals should not give advice or suggestions without having proper knowledge of the problem. I feel that health professionals should be better informed of disabilities, especially if it’s their job to deliver the children and be the first to see the problem." —26-year-old mother of a 1-month-old son with cleft palate.
One area that seemed to be of special concern to many parents was the lack of knowledge that informing professionals had with regard to feeding problems associated with clefts.
"I think OB personnel should be educated in how to take care of and feed these infants. When I left the hospital, no one showed me how to use the special cleft palate bottle. My daughter really didn’t eat until I got to the Cleft Palate Center, where the nurse showed me how to use the bottles." —37-year-old mother of an 8-year-old daughter with cleft palate"The time in the hospital was totally frustrating. The nurses and the pediatrician told me that I could breast feed... . I called the lactation consultant, and she told me I couldn’t do it. This was about an hour before I was discharged from the hospital." —31-year-old mother of a 7-month-old daughter with cleft palate.
Many parents expressed a desire for the informing professionals to show increased caring and compassion during informing interviews.
"The attitude of the speech pathologist who informed me was all professional—I could have used someone to be more supportive. I wish someone would have told me that my son would be fine." —38-year-old mother of an 8-year-old son with cleft palate."I had a C-section and my doctor was whispering about the infant’s condition. I knew something was wrong and kept asking. Finally the pediatric nurse pointed to the infant’s lip and said it could be ‘fixed.’ It was horrible. I think my doctor was afraid to tell me." —43-year-old mother of an 8-month-old daughter with cleft lip and palate.
Other parents emphasized their satisfaction with the informing professionals’ compassion.
"My OB and pediatrician handled it beautifully. My OB handed my son to me and said ‘You have a son. There’s a small problem that can easily be fixed.’... Within approximately 15 minutes, my pediatrician called and said he had put me in touch with the Cleft Palate Center and they would call me and help me with feeding. He also assured me that it was correctable." —52-year-old mother of a 15-year-old son with cleft lip and palate.
Several parents emphasized a desire for more information at the time of the informing interview.
"I was very scared and confused. My doctor should have spent time with me explaining everything." —18-year-old mother of an 8-month-old daughter with cleft palate."At the time we were told, I felt I couldn’t get enough information. I wanted to know all that I could." —33-year-old mother of an 8-month-old daughter with cleft lip and palate.
Several parents were dissatisfied with the amount of time it took the informing professionals to tell them about their children’s diagnoses.
"I felt my obstetrician should have informed me of the cleft palate. We waited hours on hours for the pediatrician. The nursing staff kept saying they would bring the infant in 15 minutes. Fifteen minutes turned into several hours." —33-year-old mother of a 1-year-old daughter with cleft palate.
Many parents emphasized the importance and value of being referred to other parents of children with clefts.
"I believe the health professional should show compassion for the family ... and most importantly put them in contact with another family who has been through it and can provide first hand information on what to expect." —42-year-old mother of a 3 year old son with cleft lip and palate."Another mother of a child with a cleft talked to me for an hour on the phone the day after my son was born. She kept saying that her son was older and that things have worked out great for him—this reassurance made me feel better. I can’t stress enough how much this phone conversation meant to me at the time, and even now." —46-year-old mother of a 13 year old son with cleft lip and palate.
Parents also provided comments regarding referrals to professionals who specialize in the management of cleft lip and palate.
"The best thing the physician can do is put the parents in touch with the Cleft Palate-Craniofacial Center or someone who really understands the problem and what you’re going through." —42-year-old mother of a 1-year-old son with cleft lip and palate.
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DISCUSSION |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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Neither of the studies found significant differences between parental experiences and preferences with respect to the amount of time taken to convey information. The majority of parents in both the present and previous17 studies reported that the informing professional took little time "getting to the point" during the informing interview. These findings support previous data that suggest that parents want to be informed of a child’s diagnosis as soon as it is made.2,11,12,22,25,26 The time that it takes for a health professional to inform a parent that his or her child has an oral-facial cleft is likely influenced by the fact that these types of defects are often immediately apparent.27
Relationships between the degree to which parents knew the informing professional and their experiences with some of the dimensions of behavior were statistically significant in both the present and previous17 studies. The correlation between knowing an informant well and increased experience with specific elements of the informing interview emphasizes the importance of the development of an ongoing relationship between patients and health care professionals. This correlation may reflect a true difference in health professional behavior, a difference in parental perception of health professional behavior, or a combination of these 2 factors. The present study did not provide a way for determining which of these possibilities is most likely.
The statistical findings of the present study were supported by anecdotal comments provided by parents. When parental responses to open-ended questions were reviewed, a theme of dissatisfaction with health care professionals’ knowledge of oral-facial clefts and treatment was evident. This finding emphasizes the need for obstetricians, pediatricians, and prenatal radiologists to have a general understanding of the prognosis and management for newborns with cleft lip and/or palate. It is also essential that the nurses involved in caring for mothers of newborns with oral-facial clefts be aware of associated feeding complications and be able to refer mothers to lactation specialists. In addition, health care professionals who interact with new parents in the prenatal or immediate postnatal period must be prepared to refer families to a craniofacial specialist or center immediately on diagnosis.
Because oral-facial clefts are immediately apparent at birth and because parents want to be informed of clefts as quickly as possible, obstetricians, pediatricians, and prenatal radiologists are likely to continue to perform the majority of cleft lip and palate informing interviews. The results of this study suggest that it is beneficial for parents to be informed by a professional with whom they have developed an ongoing relationship as soon as possible after birth. However, after being initially informed, access to professionals who are trained to provide parents with difficult information about their children’s health, such as genetic counselors, as well as professionals with expertise in management of clefts should be immediately available.
The present study was retrospective and therefore included inherent limitations. It is possible that parental opinions concerning informing interviews are influenced by time and experiences. The questionnaire used did not gather information to allow for the distinction between children with syndromic clefts and children with nonsyndromic clefts. Many children with syndromes have additional medical and developmental complications that could influence parents’ experiences with and preferences for informing interviews.
The present and original17 studies used different methods for questionnaire administration. In the present study, questionnaires were administered and returned through the mail; the response rate was 43%. This suggests that the current study may have limitations secondary to the low response rate.
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CONCLUSIONS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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ACKNOWLEDGMENTS |
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We thank Dr R. Strauss for permission to use the questionnaire that was developed for his studies.
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FOOTNOTES |
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Reprint requests to (M.L.M.) Cellomics Bldg, Ste 500, University of Pittsburgh, 100 Technology Dr, Pittsburgh, PA 15219. E-mail: marazita{at}sdmgenetics.pitt.edu
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REFERENCES |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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This article has been cited by other articles:
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  M. Levetown and and the Committee on Bioethics Communicating With Children and Families: From Everyday Interactions to Skill in Conveying Distressing Information Pediatrics, May 1, 2008; 121(5): e1441 - e1460. [Abstract] [Full Text] [PDF]
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K. A. Hacker, E. Myagmarjav, V. Harris, S. F. Suglia, D. Weidner, and D. Link Mental Health Screening in Pediatric Practice: Factors Related to Positive Screens and the Contribution of Parental/Personal Concern Pediatrics, November 1, 2006; 118(5): 1896 - 1906. [Abstract] [Full Text] [PDF]
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