© 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.
In the group of children which claimed to be fully informed about their disease, 13.8% could describe a correct, professional diagnosis as "leukemia”, "cancer”, "lymphoma”, "Hodgkin disease”, etc. Ten percent of patients could present only general description of clinical symptoms of their disease. They mentioned "anemia”, "bleeding”, "hemorrhage”, "lymph node disease´, "stomach ache”, "high white blood count”, "poor blood count” as a reason for admission to the hospital. In 5.7% of cases a general statement of health disturbances was presented ("kidney illness”, "illness treated by chemotherapy”, "bad blood”). Surprisingly, 70.2% of informed children were able to present only few details about their disorder. This group of patients described their illness as "sepsis”, "my illness”, or even "I do not remember the reason to be hospitalized”.
Discussion
The interest in the impact of information given to cancer patients on their functioning was started in 60´s and was related to development of psychology. Most studies performed at that time referred to adults, and in 80´s these studies were also extended to pediatric patients [8-9, 13]. In conclusion, some authors suggested providing patients with the information as a tool improving their quality of life. The transmission of the information from a doctor is understood as a process continued during many sessions over the time [3-7, 13-18]. Audio taping of the meeting of patients´ family and doctors could also be helpful in enabling the patient and parents to recall presented information [7, 16]. Evaluation of acquired information after a time is also of importance [9, 17-22]. The SIOP Working Committee on Psychosocial Issues in Pediatric Oncology published recommendations on principles of cancer diagnosis presenting to children [1, 2]. The unified standard of informing about cancer diagnosis and psychological support was also introduced in Polish pediatric onco-hematology centers since 1998 [11-12]. Our model was based on the previous experience of several groups [1-2, 5, 7]. Principles of our model are: 1. to provide a "full" information on different aspects of the disease and treatment process facing the child, its toxicity and threaten late effects; 2. to repeat an information on several occasions over the time, and 3. to evaluate the level of knowledge both in sick children and their parents.
There are not too many reports based on multicenter studies on the national level published up to date dealing with unified, standardized model of informing about cancer diagnosis to children and adult patients [6, 16, 18-22]. All available implemented a standard which was introduced in a single center. Our attempt was to contribute to the problem on a basis of multimember used standard.
The most of children with cancer (almost 80%) treated in Polish pediatric onco-hematology centers within 3 years confirmed to be informed on the disease and 80% of them were informed according to proposed standard. This high percentage indicates that the procedure was successfully introduced as a common practice.
A special attention should be given to a group of children who claimed to be informed although their parents were convinced it did not happen. These discrepancies indicate that some children probably are looking on their own the answer to the question "what´s going with me”? It also confirms the necessity to check out weather transmission of information is provided according to proposed model.
Some patients are doing better if they have only a little information on their disease. Our results confirm the suggestion that requirements for information on the disease are of the individual matter [15, 17, 20, and 23]. Thus more than 50% of informed children do not need additional information. This phenomenon is even more significant in children who were not previously informed on their disease. However, the children who had an access to information behind the standardized process, and often even without parent´s knowledge, showed high level of necessity for obtaining information on the disease and treatment. At the same time they had no feelings of being cheated by their parents.
Eiser C [21] stated that 72% of survivors felt they did not know enough about their illness and 62% wanted to know more. Illness- related knowledge in different groups of survivors was generally insufficient. They could recall the name of disease more often then our actually on-treatment children, but their cancer related knowledge was superficial or very poor [22]. The defense mechanisms leading to selection of some information could be one of the reasons that they remember only general explanation of their illness [24-25]. In our opinion, the groups of „informed” cancer children, who present the low level of the illness understanding, need further studies.
The talk with a child about the diagnosis and prognosis should improve the child´s well being. Only few studies have examined the impact of information disclosure on functioning of cancer children. In one of those, poor- informed younger children and well-informed older one showed the similar level of distress [17]. In the others, giving full information to the child had positive impact on their emotions and behavior [18].
All medical teams involved in the study were multidisciplinary. Psychologist was working as a member of the medical team in each ward. The psychologists were responsible to control the level of realization of the information transmission model. In addition, the deviations from protocol were discussed regularly by all psychologists, on the national level. Our results show that even if there is an agreement to provide the information to all patients according to specific protocol where supplementary efforts in patient´s better illness understanding need to be made.
Communication of cancer diagnosis to a sick child and their parents requires not only well-prepared model, but also skilled medical staff, and good receptiveness of patient and parents [26]. The emotional state of a child and parents determine theirs ability to hear and comprehend the information given [5, 15, 17-18, 20, 23]. Thus, repetition and clarification information are required until patients and their parents adapt to new situation, and they were able to comprehend complex news. Written or video material, taped interviews can help in this process.
Conclusions
1. There is relatively high level of the convergence between parents and children reports on understanding disease.
2. More than half of previously „informed” cancer children (56.4%) do not need more information on their illness.
3. 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.
Piśmiennictwo
1. Masera G, Chesler MA, Jancovic M et al. SIOP Working Committee on Psychosocial Issues in Pediatric Oncology: Guidelines for Communication of the Diagnosis. Med Pediatr Oncol 1997; 28: 382-385. 2. Jankovic M, Van Dongen-Melman JE, Vasilatou-Kosmidis H, Jenney ME Improving the quality of life for children with cancer. Euroepan School of oncology advisory Group. Tumori, 1999, 85(4):273-279. 3. Greenberg LW, Jewett LS, Gluck RS, Champion LA, Leikin SL, Altieri MF, Lipnick RN Giving information for a life-threatening diagnosis. Parent´s and oncologist" perceptions. AM J Dis Child 1984; 138(&):69-53. 4. Jankovic M, Loiacono NB, Spinetta JJ et al. Telling young children with leukemia their diagnosis: the flower garden as analogy. Pediatr Hematol Oncol 1994;11: 75-81. 5. Eden OB, Black I, MacKinlay GA, Emery AE. Communication with parents of children with cancer. Palliat Med. 1994;8(2):105-14. 6. Blacklay A, Eiser C, Ellis A: Development and evaluation of an information booklet for adult survivors of cancer in childhood. Arch Dis Child 1998; 78: 340-344. 7. Masera G, Beltrame F, Corbetta A, et al. Audiotaping comunication of the diagnosis of childhood leukemia: parents´ evaluation. J of Ped Hem/Oncol 2003; 5: 368-371. 8. McPherson CJ, Higginson IJ, Hearn J. Effective methods of giving information in cancer: a systematic literature review of randomized controlled trials. J Public Health Med. 2001; 23(3):227-34. 9. Anthony G Tuckett : Truth-Telling in Clinical Practice and the Arguments for and Against: a review of the literature. Nursing Ethics, 2004, 11, 5, 500-513. 10. Samardakiewicz M., Kowalczyk J.R. Effect of treatment conditions upon psychical status of children with childhood cancer. Med. Sci. Monit., 1998; 4(4): 678-683. 11. Samardakiewicz M, Kowalczyk JR, Mazurowa M, et al. Presentation of diagnosis to children with cancer and their parents. Med Pediatr Oncol 2002;39(4): 362. 12. Samardakiewicz M, Kowalczyk JR. The unified model of presenting cancer diagnosis in polish paediatric onco/hematology centers. Med Pediatr Oncol 2003; 41(4): 397. 13. Eiser C, Havermans T, Casas R Healthy children´s understanding of their blood: implications for explaining leukaemia to children Br J Educ Psychol. 1993, 63(Pt 3):528-37. 14. Loge JH, Kaasa S, Hytten K: Disclosing the cancer diagnosis: the patients´ experiences. Eur J Cancer 1997; vol. 33, no. 6: 878-882. 15. Ong LM, Viser MR, van Zuuren FJ et al. Cancer patients´ coping styles and doctor - patient communication. Psychooncology 1999;8(2): 155-66. 16. Ong LM, Visser FB, Lammes J et al. Effect of providing cancer patients with the audiotaped initial consultation on satisfaction, recall, and quality of life: a randomized, double-blind study. J of Clin Oncol 2000;18: 3052-3060. 17. Claflin CJ, Barbarin OA. Does "telling" less protect more? Relationship among age, information disclosure, and what children with cancer see and feel. J Pediatr Psychol 1991;Apr;16(2):169-91. 18. Last BF, van Veldhuizen AM Information about diagnosis and prognosis related to anxiety and depression in children with cancer aged 8-16 years. Eur J Cancer 1996; 32A, 2: 290-294. 19. Kadan-Lottick NS, Robinson LL, Gurney JG et al. Childhood cancer survivors" knowledge about their past diagnosis and treatment. JAMA 2002 Apr 10; 287 (14): 1832. 20. Miller SM Monitoring versus blunting styles of coping with cancer influence the information patients want and need about their disease. Implications for cancer screening and management. Cancer 1995, 15; 76(2):167-77. 21. Eiser C, Levitt G, Leiper A, Havermans T, Donovan C. Clinic audit for long-term survivors of childhood cancer. Arch Dis Child. 1996 Nov; 75(5):405-9. 22. Bashore L Childhood and adolescent cancer survivors´ knowledge of their disease and effects of treatment. J Pediatr Oncol Nurs. 2004 Mar-Apr; 21(2):98-102. 23. Leydon GM, Boulton M, Moynihan C, Jones A, Mossman J, Boudioni M, McPherson K Cancer patients" information needs and information seeking behaviour: in depth interview study. BMJ 2000; 320 (7239): 909-13. 24. Phipps S, Steele R.: Repressive adaptive style in children with chronic illness. Psychosom Med. 2002 Jan-Feb;64(1):34-42. 25. Phipps S, Steele RG, Hall K, Leigh L. Repressive adaptation in children with cancer: a replication and extension. Health Psychol. 2001 Nov;20(6):445-51. 26. Baile WF, Buckman R, Lenzi R, lober G, Beale EA, Kudelka AP SPIKES- A six -step protocol for delivering bad news: application to the patient with cancer. The Oncologist 2000; 5: 302-311.
