© Borgis - New Medicine 1/2007, s. 6-9
*Marzena Samardakiewicz, Jerzy R. Kowalczyk
Effectiveness of the model for providing cancer children and their parents with information on the disease
Department of Pediatric Hematology and Oncology, Lublin, Poland
Summary
Summary
Purpose: In our study we try to evaluate the effectiveness of the model for providing cancer children and their parents with information on the disease. Reported by the children and their parents knowledge on cancer diagnosis and its understanding were established as a criterion of the efficacy in our model.
Patients and Procedure: In total 139 children diagnosed with cancer and 139 parents entered the study. The questionnaires items were related to the range of information obtained on the disease. The course of the informing procedure was also noted. The children were asked with the open-ended questions in which were explained the reasons of their admission to the onco-/haematology ward. Patients and their parents" questionnaires as well as protocol report forms were analysed concurrently.
Results: Among informed 103 children the information was given according to the protocol and consent of parents to most of them (78.6%). The convergence between parent´s and child reports was found in 62.3% informed children group and in 16.9% non-informed group. A little more than a half of the "informed” children (56.4%) did not need more information on their disease; however the other (43.6%) expected additional information.
Conclusions: A unified procedure presentation the full information about cancer diagnosis to parents and children is worthy to continue; however the monitoring system of the illness understanding is necessary.
Introduction
A great progress in pediatric onco-hematology, which has been achieved during last decade, resulted in significant improvement of survival of children with cancer. Thus, late effects following cancer therapy become increasingly important and the quality of life is one of the concerns. The transmission of adequate information about the disease to a patient was established as a standard improving the quality of life during treatment and after completion of therapy as well [1, 2]. The medical professionals became aware of the importance of the proper way to present the information on the nature of the disease, its treatment and possible side effects to a child with cancer. The initial talk with a doctor and presented disease-related information has a great influence on the patient´s understanding of the illness. Therefore, communication process with a sick child should be undertaken during primary admission to the onco-hematology ward following the diagnosis. A child with adequate disease-related knowledge has an opportunity to cope more sufficiently with the disease.
Only few proposals how to present the diagnosis to a child with cancer has been published [3-7], and some of those have also presented the effectiveness of this process [4, 6-9].
The Polish Pediatric Leukemia and Lymphoma Group established the unified model of presentation of diagnosis to a child with cancer and parents. The efforts to introduce this model were also undertaken in all cooperating pediatric onco-hematology centers [10-12]. We observed clinically, that giving the age-appropriate information was favorable for adaptation of most of our patients. We transmitted information but do not know how we were effective in our support.
In our study we try to evaluate the effectiveness of this model. To check the level of knowledge following presented information we studied parents and children´s reports. Reported knowledge on cancer diagnosis and its understanding were established as a criterion of the efficacy our model.
Patients and Procedure
Children with cancer diagnosed during January 1997-April 2000 in 7 cooperating onco-haematology centres were subjects studied. The consecutive patients older than 5 years at the moment of diagnosis were chose to the study. In total 139 children (81 boys and 58 girls) and 139 parents (119 mothers and 20 fathers) entered the study. The median age at the diagnosis for the whole group of patients was 12.16 yrs with the range from 5.5 to 18.2 yrs. Most of the children had been diagnosed with leukaemia and lymphoma (69.8%) or Hodgkin disease (16.6%). The remaining of the patients was diagnosed with bone tumors (5.7%) and soft tissues sarcomas (5.0%). The other types of tumours (except brain tumours) were diagnosed in 2.8% of the studied children.
Most patients (94.4%) had both parents living together and single parent cared for 5.6% of children. Most of children with cancer (85.7%) had healthy siblings and 15.3% were the only child. In 71.5% cases parents accompanied their children everyday during the stay at the ward. In 13.9% cases more than twice a week, and 11.7% – once a week, and 2.9% – irregularly. The informed consent to the procedure was obtained from most of the parents 137/139 (99.6%).
All studied children were informed on the diagnosis according to the protocol introduced within Polish Pediatric Leukemia and Lymphoma Study Group (PPLL SG). The PPLL SG model of presentation the diagnosis to children was based on the SIOP recommendations and our previous experience [1-2, 10]. The physician communicates the initial diagnosis to parents, and informed consent to present the information to a child is obtained. Simultaneously, the psychologist collects date on the initial adaptation of the child at the ward. Finally, the meeting with parents and their child with medical team is arranged. The physician or head of the department adjusts the mode of presentation of the diagnosis to a child in the developmentally – appropriate way. Each step of this protocol was noted in the special report form by psychologist (Figure 1).
| Procedure Stages | Undertaken Steps |
I
Acquainting the child and the parents with ward, preliminary diagnosing, problems occurring in the family´s socio-economical status | |
II
Talk between head of the department and parents about the diagnosis and treatment | |
III
Discussing the extend of information that is to be communicated to the child | |
IV
Informing the child about the diagnosis of cancer and the plan of therapy | |
V
Informing the members of therapeutic team abort the extend of information communicated to the child | |
VI
Repeating information, clarifying psychological help to the patent and their parents | |
Fig. 1. The Procedure of Giving Information to the Patient and their Parents. A Report Form.
Adequate self-report questionnaires were administered to children and parents during the first admission to the ward with the median of 58 days following diagnosis. Each child and parents received the separate questionnaire which was expected to be filled – up independently and personally. The questionnaires items were related to the range of information obtained on the disease. The children were asked with the open-ended questions in which were explained the reasons of their admission to the onco-/haematology ward. Parents´ questionnaire included items which describe their expectations and imagination on the child disease-related knowledge.
Patients and their parents" questionnaires (N=130, per each group) as well as protocol report forms were analysed concurrently.
Results
Of 137 eligible subjects, 130 (94.9%) completed measures, and 103 (79.2%) of them claimed they had been informed about the diagnosis. The remaining patients (20.8%) emphasized that they did not receive any information related to diagnosis. Among informed 103 children the information was given according to the protocol and consent of parents to most of them (78.6%). All children studied and their parents returned completed questionnaires. Completed questionnaires by both groups of subjects were analyzed concurrently. In our study the convergence between parent´s and child reports was found in 62.3% informed children group and in 16.9% non-informed group. In 3.1% cases parents regarded their child as informed but the child negated it. In addition, 23 children (17.7%) also claimed to be informed even if their parents did not realize that and they negated this fact. The convergence and discrepancy rate between parents and children reports are presented in the table 1.
Table 1. The convergence level (%) in the parents and children reports.
| Parents | Child | %
(N) |
| My child was informed | I was informed | 62.3 (81/130) | Convergence |
| My child was not informed | I was not informed | 17.7 (23/130) |
| My child was informed | I was not informed | 3.1 (4/130) | Discrepancy |
| My child was not informed | I was informed | 16.9 (22/130) |
A little more than a half of the "informed” children (56.4%) did not need more information on their disease; however the other (43.6%) expected more information. Within not informed patients only 26.1% wanted to receive some details on their illness. However, the majority of these children (73.9%) were not interested to broaden their knowledge about the topic. At the same time 52.3% of them suspected that their parents would cover-up the truth. On the opposite, there was a specific group of children (17,7%) which acquired the information on their own, without knowledge of parents. They showed a great need to gain access to further information (76.9% of them wanted more details), and only 20.5% of them had feelings of being cheated by their parents.
In our study, 34.6% of parents refused to present diagnosis to their child. The main reason for parent´s refusal was child´s age. They mentioned that the child is „too young” or ”we will tell him when he/she grows-up”. Some of the parents indicated fears of a psychic state of their child or the child´s welfare as the main reason for refusal.
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Piśmiennictwo
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