Abstract
During the first counselling after the birth of a child with cleft lip and palate (CLP) information about the malformation should be delivered and a long-standing relationship between the cleft team and the affected family must be established. The present study was conducted to evaluate the parents’ experiences, needs and expectations with this first consultation. A questionnaire was sent to 105 parents at the cleft clinic, which could be answered anonymously. It collected demographic data, data on the parents’ pre-existing level of information and the parents’ assessment of the counselling at the cleft centre. Seventy percent of the questionnaires were returned. In 16% the clefts were diagnosed prenatally, in 32% there were relatives with clefts. Seventy-one percent of the parents received detailed counselling, 89% of which occurred in the first week. The parents requested that information about surgery (80%), feeding the child (63%) and the aetiology of clefts (44%) should be given. The quality of the consultation was rated very good or good by 87% of families. This study confirms the importance of initial counselling for CLP. The exceptional psychological situation of the family has to be considered and a close collaboration between cleft centre and maternity hospitals is mandatory.
After the birth of an infant with cleft lip and palate the parents are usually shocked at the first sight of their child’s face. The family’s situation is classified as a ‘psychosocial emergency’ , characterized by disappointment, helplessness and desperation, which may lead to a period of severe emotional crisis for the parents . Often the parents feel guilty about the malformation and are concerned about the future of their child . This situation can arise whether the parents were informed or not about the presence of the cleft by prenatal ultrasonic examination.
The obstetrician may also be surprised by the malformation and, under pressure of time or lack of information, not be able to support the parents sufficiently. In many cases, mother and child are temporarily separated because of assumed feeding problems.
Initial counselling in a cleft centre is of significant importance for the parents who need extra support and encouragement during this vulnerable period. In the first consultation, basic information about the malformation must be provided and a long-lasting confidential relationship between the cleft team and the family needs to be established .
The present study was conducted to evaluate parents’ experiences of the first counselling at the cleft centre concerning timing and content of the consultation and the quality of the information provided. Data on the needs, expectations and concerns of the family should be obtained in order to provide guidelines and strategies for the crucial initial counselling and to enable parents with cleft lip and palate infants to cope with the malformation.
Material and methods
The present study was performed in adherence to the Declaration of Helsinki and the Good Clinical Practice (GCP) guidelines. The study was designed as a retrospective cross-sectional survey and approved by the hospital’s Total Quality Management. Questionnaires with the possibility of an anonymous reply were mailed to 105 families who attended the interdisciplinary cleft clinic at the Lucerne Cantonal Hospital between 1998 and 2004.
The structured questionnaire consisted of four parts (see Appendix A ). The first part provided basic information, such as children’s age, number of children in the family, diagnosis of the affected child, concomitant diseases and a possible family history of clefts. In the second part of the questionnaire the parents were asked whether they were aware of the cleft prenatally and how they dealt with this information. The parents were also asked to judge the first postnatal information about the cleft obtained from a medical professional. In the third part, information was collected about the first detailed counselling at the cleft centre. This comprised questions and ratings on timing, topics and quality of the consultation as well as information about the medical professional who carried out or should carry out the counselling. In this section, the parents were also asked if postoperative photographs of patients or information about cleft patient organizations should be provided during the first consultation. In the fourth part of the questionnaire, free comments, criticism and suggestions for improvement could be made.
Data obtained are presented as mean ± standard deviation. If not otherwise mentioned the relative data were calculated as a percentage from all questionnaires that were returned.
Results
Seventy-three (70%) parents completed (at least in part) and returned the questionnaires. At the time of the study, the affected children were between 10 weeks and 19.5 years of age (median 4.5 years). In all cases the child treated was the first child with a cleft in the family. Twenty-eight patients had complete clefts of lip and palate (CLP), 26 patients had isolated clefts of the palate (CP) and 14 children isolated cleft lips (CL). In five cases the parents did not specify the diagnosis. There were no syndromic clefts.
In 12 cases (16%) the clefts had been diagnosed prenatally by ultrasonic examination. This prenatal information was judged to be advantageous by seven parents. Forty-three percent of those 61 parents who were unaware of the cleft until birth would have preferred to know the diagnosis prenatally whereas 49% would not. In 23 families (32%) there were relatives with clefts. Seventy-four percent of those parents had known this before their own child’s birth.
Figure 1 reports which professional provided the first information about the cleft to the family immediately after birth. In 32% this was the midwife, in 25% the paediatrician and in 21% the obstetrician followed by the surgeon, the lactation consultant or nursing staff. Sixty-three percent of the parents rated the information given as very good or good, 18% as moderate and 16% as poor or very poor. Insufficient primary information at the referring hospitals was mostly due to lack of knowledge about the future cleft treatment principles at the cleft centre.
Fifty-two parents (71%) received detailed counselling at a major cleft centre. In 89% this consultation took place within the first postnatal week, which was judged to be the correct time by 79%, whereas 21% regarded this point as too late. Parents of 60 children (82%) supported this finding and stated that the first detailed information should be given ‘as early as possible’, ‘immediately after birth’ or ‘within the first days after recovery of the mother’. Figure 2 shows which professional actually performed the first detailed counselling and according to the parents’ opinion which professional should do this. In most cases, the surgeon gave the basic information and established the first contact with the cleft team, followed by the lactation consultant, the paediatrician and the orthodontist. This distribution was to a large degree in accordance with expectations of the parents. Thirty-two percent of the parents preferred another person, mostly the lactation consultant, as well as the physician to join the counselling. The quality of the consultation was rated very good or good by 45 parents (87%) and moderate by four parents; only parents of two children were dissatisfied with the first counselling ( Fig. 3 ).
Table 1 shows the topics that should be covered during the first counselling. As expected, surgery and feeding of the child were most frequently mentioned. Information about the origin of clefts is also very important for the parents and administrative issues should be addressed in order to reassure the parents. The majority of the parents (80%) would like to see photographs of children who have undergone surgery. Fifty-eight percent of the parents would appreciate being informed about cleft patient organizations and support groups, whereas 42% preferred not to receive such information.
| Topic | Number of parents |
|---|---|
| Surgery | 58 (80%) |
| Feeding | 46 (63%) |
| Ear problems | 35 (48%) |
| Causation of clefts | 32 (44%) |
| Upcoming administrative problems | 23 (32%) |
| Other | 20 (27%) |
Analysis of the free comments revealed two main points that should be improved. As most parents did not know about the malformation prenatally, their child’s cleft came unexpectedly and there was in many cases a lack of sufficient accurate information available immediately after birth. This situation mostly occurred if the child was born in a referring hospital. Many parents expressed the wish for psychological support of the whole family during the initial period after birth of a child with cleft lip and palate.
Results
Seventy-three (70%) parents completed (at least in part) and returned the questionnaires. At the time of the study, the affected children were between 10 weeks and 19.5 years of age (median 4.5 years). In all cases the child treated was the first child with a cleft in the family. Twenty-eight patients had complete clefts of lip and palate (CLP), 26 patients had isolated clefts of the palate (CP) and 14 children isolated cleft lips (CL). In five cases the parents did not specify the diagnosis. There were no syndromic clefts.
In 12 cases (16%) the clefts had been diagnosed prenatally by ultrasonic examination. This prenatal information was judged to be advantageous by seven parents. Forty-three percent of those 61 parents who were unaware of the cleft until birth would have preferred to know the diagnosis prenatally whereas 49% would not. In 23 families (32%) there were relatives with clefts. Seventy-four percent of those parents had known this before their own child’s birth.
Figure 1 reports which professional provided the first information about the cleft to the family immediately after birth. In 32% this was the midwife, in 25% the paediatrician and in 21% the obstetrician followed by the surgeon, the lactation consultant or nursing staff. Sixty-three percent of the parents rated the information given as very good or good, 18% as moderate and 16% as poor or very poor. Insufficient primary information at the referring hospitals was mostly due to lack of knowledge about the future cleft treatment principles at the cleft centre.
