Attitudes and Awareness Towards Organ Donation Among Parents of Pediatric Brain Death Patients in a Pediatric Intensive Care Unit in Eastern Turkey

Background

Organ transplantation (OT) is a widely accepted lifesaving intervention for patients with end-stage organ failure. Despite organ donation (OD) policies and favorable outcomes, the shortage of donated organs continues to be a leading factor limiting pediatric OT. In addition to the refusal of OD by parents, inadequate size matched brain death (BD) diagnosis in younger children is another important factor limiting OT in pediatrics [1,2]. It is difficult for families to accept OD immediately after the death of their child. Therefore, family interviews must be managed while being aware of the emotional and mental conflict of the family. Hence, supporting them by establishing a conscious communication throughout the process is paramount [3].

Despite Turkey’s leading status in worldwide living organ donors, the cadaveric transplant rates remain very low [4–6]. The International Registry in Organ Donation and Transplantation data in 2017 revealed that living donors, in contrast to cadaveric donors, per million population were 47.5 and 7, respectively [6]. The real causes of OD refusal of parents after pediatric BD and the factors that most influence their decisions are not sufficiently known in Turkey.

The primary aim of this study was to investigate the detailed factors that may be relevant to parents’ refusal, including their education and knowledge about OD and OT. Information about underlying causes of their refusal and awareness of OD might help to guide the design and implementations of more effective community education and donation request strategies.

Material and Methods

DATA COLLECTION:

The predefined clinical data were obtained from the medical records and institutional databases. The parents were informed about the aim of this study via phone calls. An appointment for a home visit to administer the questionnaire was arranged with the families for the purpose of receiving their consent to participate in the study. In the home visits, before implementing the questionnaire, signed informed consent was obtained from each parent after explaining the purpose of the study. Parents who could not be contacted via phone calls and those who did not consent to participate in the study were excluded. The questionnaire was designed to collect data on parents’ demographics, educational level, knowledge about OD and OT, and the underlying causes of their refusal to allow OD from their children (Table 1).

STATISTICAL ANALYSIS:

Statistical analyses were performed using SPSS (Chicago, IL, USA), version 20. Data on continuous variables that were normally distributed are presented as mean±standard deviation, and data on non-normally distributed continuous variables are presented as median (minimum–maximum). Categorical variables are presented as frequency and percent.

Results

During the study period, the diagnosis of BD was made for a total of 16 patients. The parents of all 16 patients refused OD. Table 2 shows patient demographic data, as well as the methods and the criteria used to diagnose BD. The parents of three patients were excluded from the study; one set of parents could not be contacted via phone calls, and the other two sets of parents stated that did not want to relive their painful experience and refused to be included in the study. The study included 24 parents (12 mothers and 12 fathers) of the 13 patients because the mother of one patient and the father of another patient died before their child’s BD. The mean duration of time between diagnosis of BD and implementation of the questionnaire was 7.2±4.2 months (range, 1–15 months). The demographic characteristics, the level of education, and the knowledge about OD/OT, along with the reasons for OD refusal, are presented in Table 3. The rate of illiteracy in the parents was 33.3%, and only one (4.2%) parent had graduated from university. The rate of knowledge about OD was 70.9%, and the most common source of information was television programs (35.9%). All parents mentioned their insufficient knowledge about OD. The two most common reasons for organ refusal were unwillingness to impair their child’s internal organ integrity (28.7%), and thinking that their child would feel pain at the time of OD (21.2%). Five (20.8%) parents expressed regret for not giving consent to OD.

Discussion

In the current study, unfortunately, none of the parents gave consent for OD. In our opinion, the low level of education had a considerable impact on this decision. Among the parents included in the study, 33.3% were illiterate, 16.6% had dropped out of elementary school, and 25% had graduated from elementary school. In the literature, the relationship between parents’ level of education and acceptance of OD is conflicting. While one study revealed a direct correlation [7], another showed an indirect correlation [1], and others showed no influence [8,9]. We did not have an opportunity to evaluate this relationship in in the present study because none of the parents gave consent to OD. A questionnaire administered to 414 citizens in Turkey showed that, the rate of volunteering to allow pediatric OD was higher in people with a high level of education compared to people with low educational levels [10].

Many of the parents (70.9%) in the present study were aware of OD before their child’s BD, but all the parents indicated they felt they had insufficient information about OD. Previous Turkish studies have found that the level of information about OD is insufficient, even among healthcare professionals [11–13]. Television programs are the first-line source of information (35.9%) regarding OD and OT. Additionally, it was also shown that the rates of acquiring information from public service ads on television, family practice centers, religious officials, radio programs, and the internet are very low.

Due to the participants’ relatively low level of education, the low rate of information given by the educational establishment could not objectively indicate the reality. The results of the current study may help increase the rate of cadaveric OT, which was promoted by the Ministry of Health of Turkey. We think that encouraging and emphasizing this subject through mass media, particularly television series, is of utmost importance. Öztürk et al. [4] reported that the parents of two of 10 patients with BD gave consent for OD. One of these two families emphasized that they were encouraged by a television series in which transplantation was performed using an organ from a patient with BD [4]. It will be possible, that along with the difficulties of life and living conditions of the children who are listed in transplantation, the number of television programs regarding BD and OD would be increased. In this regard, it could even lead to the production of cinema films. Organ donation is approved and promoted by the religious council in Turkey [14]. In addition, initiating an education program for Muslim religious officials this matter might increase willingness to allow OD.

In the current study, the unwillingness to impair a child’s internal organ integrity (28.7%) and being afraid that their child would feel pain at the time of OD (21.2%) were the two most common reasons given by parents for their OD refusal. The important reasons for refusal of OD found in the current study were as follows: parents were unaware that BD is real death (16.2%), the inability to make appropriate decisions (13.7%), the anonymousness of the patient that will be transplanted, and thinking their child’s organ will be given to a privileged child instead of a patient who is in real need. A recent Turkish national study [15] administered a questionnaire to 202 non-medical academicians and found that 92.6% did not plan to be organ donors, and 25.7% of them stated that this was due to their lack of information about OD. Interestingly, among these academicians, 60.4% believed that OD was done for a financial gain, 52.5% believed that there is a partiality in transplantation lists, and 81.2% had a concern about illegal trading of organs and tissues [15]. Where possible, especially by the Ministry of Health of Turkey and other authorized organizations, the processes should be more transparent, and they should raise public awareness and make the transplantation list open-access to the public. The patients in the transplantation lists should be announced on television programs and, accordingly, a brief public disclosure should be made. Constant education on BD, OD, and its place in our religion for children in public schools at the appropriate time and syllabus would increase the rate of OD in the long-term. As shown in our study, this issue should come to the fore in media organizations, family practice centers, and mosques in order to increase the frequency of OD in the immediate future. In our study, 20.8% of the parents expressed regret regarding not donating their child’s organs. Additionally, 62.5% stated that they would donate their own organs in the future. These outcomes showed that, in comparison to adults, it is more difficult to increase the rate of OD in pediatric patients.

The main limitation of our study is that the number of participants was low. Moreover, the low educational and socio-economic levels of our participants prevent generalization of our results to the country as a whole. We believe that multi-center studies with larger sample sizes are warranted. However, due to the methods and the subject of the present study, we believe that it is extremely valuable because it is a preliminary study in our country.

Conclusions

The rate of consent for OD given by the parents of BD children is very low. The most important reasons are the parents’ low level of education and insufficient information on BD and OD. The unwillingness to allow impairment of their child’s internal organ integrity and their consideration that their child will be in pain at the time of OD were the most common reasons. To increase the rate of OD in pediatric patients in the short-term and long-term, the state authority should set a deliberate course for public disclosure.