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Ethical Issues




Ethical Issues

General: The subject matter of the research (viz. child abuse and neglect) is in itself extremely sensitive. Thus, safety and well-being of children participating in such research is paramount. This has been a major concern in all phases of research planning - from defining objectives, choosing instruments and procedures including debriefing, to dissemination - and will also be a first order priority during the time of conducting the research. However, as the current project is a population-based epidemiological study and does not include in its procedure any kind of therapeutic or other intervention; given the fact that information gathering will take place in classrooms, anonymously, and that questionnaires will be applied by trained researchers, it is strongly believed that there will be no substantial risk for young participants. In relation to the researchers’ direct contact with school drop-out population, all the necessary measures will be taken in order to preserve physical and emotional integrity of participants. Thus, direct contact with school drop-out children will take place a) after arranging appointments with their parents the most appropriate date and time, b) only if one of the parents is present at home, and c) with the presence of two trained researchers. It should also be noted that children who will participate in the present study should not be considered as healthy volunteers, as they do not constitute a control group; children who will participate in the study constitute a randomized sample which will serve the methodological requirements of the population-based epidemiological study planned.
The aims of the present project wouldn’t be achieved without the participation of children and adolescents. Many retrospective studies on CAN have been carried out with adults; however they were not able to sufficiently respond to crucial questions on CAN issues such as the developmental course of children experiencing abuse and neglect and the recurrence of abuse and neglect in time, among others. Furthermore, retrospective studies seem to bear less accuracy than population-based surveys due to the phenomena of either false recovered memories of abuse or loss of traumatic memories of abuse during childhood that have been reported in young adults. In addition, previous studies have shown that children are more likely to experience abuse and neglect during preschool years and in early adolescence, than in other ages. This finding has strongly motivated the decision to seek the participation of pre-adolescent and adolescent subjects.At the end of the day, those particular instruments to be utilized have been created by organizations internationally recognized for their sensitivity to child issues like WHO, UNICEF and ISPCAN, designed exactly for that particular way of administration, securing, thus, the ethical credentials required for conducting such a population survey in children’s populations.
The benefits expected of the present project will be plenty, while potential burdens for the participants practically inexistent. Based on the results of this study, it will be possible to evaluate already existing prevention and intervention programs, social demand for new prevention and intervention programs will be more readily evaluated, policy-making activities related to CAN in the south-eastern European countries will be provided with a robust database presenting the real size of the problem of CAN in this area, costs for planning future interventions will be more efficiently calculated and our understanding on the developmental course of child abuse and neglect will become better (enabling the construction of more effective prevention and treatment programs).



Monitoring and evaluation of ethical issues and corrective interventions: In order for ethical issues to be continuingly monitored and evaluated, each partner country will organize a National Advisory Board for ethical issues to be consisted of three members: a representative from the local institution responsible for the project and two national independent experts on child abuse and neglect issues. Each National Advisory Board will be responsible for: a) reviewing the project and processes involved before commencing any research in national territory, b) monitoring ethical issues during the whole period of research execution and provide corrective interventions, if necessary, c) producing an annual report on ethical issues and send it to the Central Independent Advisory Board for ethical issues.
A Central Independent Advisory Board for ethical issues will also be formed, which will consist of five members: Prof. Kevin Brown, Head of WHO’s Collaborating Centre for Child Care and Protection, a representative of Innocenti Institute and three independent experts with documented experience on CAN research, with the Scientific Coordinator of BECAN project serving as a Secretariat. The Central Independent Advisory Board for ethical issues will be responsible for: a) evaluating the annual reports on ethical issues that National Independent Advisory Boards will be producing and provide corrective interventions, when necessary, and b) producing an annual report on ethical issues based on the annual reports of the National Independent Advisory Boards for ethical issues, and send it to the European Commission.
 

Instruments and procedure: The instruments that will be used in the survey are developed by ISPCAN and UNICEF, organizations well known for their high ethical profile regarding all issues related to vulnerable children – from research to practice. Both instruments, namely ISPCAN Child Abuse Screening Tool – Children’s Version (ICAST-CH) and Parent Questionnaire: Punishment, discipline and violence in the home (ICAST-P), have been developed on the basis of this strong and clear ethical orientation of ISPCAN and UNICEF. The accompanying Manuals include clear guidelines for the administration of the instruments. The guidelines are developed from a child right's perspective with the intent to guide BECAN partners and researchers to modify tools in such a way that will render them culturally sensitive results. Both instruments’ Manuals will be translated in the official language of each partner country (as well as in the language of substantial minorities of these countries, if different) and culturally validated. Training of the researchers who will deliver instruments to participants will be based on these Manuals.
Ethical principles that guide research with human participants, such as informed consent, a capacity to understand informed consent, respect of the autonomy of the child concerning the provision of information, anonymous administration, debriefing, etc. are integrated in the ISPCAN’s suggested procedure of applying the instruments. Thus, the National and Central Advisory Boards tasks will include close monitoring of strict application of aforementioned procedures.

Ethical Committee Review: One of the prerequisites ISPCAN sets in order to provide permission for use of the questionnaires is that organizations conducting research should submit the particular research protocol for ethical review to a professionally approved entity in the country where the survey will be conducted. In the case of BECAN project, it is provisioned that each partner will submit the protocol for ethical review to the respective Ethical Committee of the participating organizations (if existent) or to an equivalent Ethical Committee of his/her country. In addition to that, as the research design request collection of data in classroom settings, each partner will have to follow the National regulations in order to obtain permission to enter schools (this process usually requires that the research protocol is submitted and approved by the Ethical Committee of the Ministry of Education.) In particular, the coordinating organization, Institute of Child Health, will submit the research proposal to the organization’s Ethics Committee as well as to the Pedagogic Institute of Hellenic Ministry of Education, responsible for evaluating research proposals involving schools in Greece. Subsequently, such practice will be followed by other participants of the BECAN consortium (involving submission and approval of the project by the Directorate of Pre-University Education of the Ministry of Education in Albania, by the Ethics Committee of the Ministry of Education in F.Y.R Macedonia, by the Ethics Committee of the Faculty for Special Education and Rehabilitation, University of Belgrade, Ministry of Education of the Republic of Serbia and the administration and Council of parents in Serbia, etc). Copies of approvals from national authorities will be forwarded to the European Commission by the Central Independent Advisory Board for ethical issues.

Informed Consent: In order to secure rights of people who participating in the study, three forms of informed consents will be handed to the participants: a) the parent will sign a consent form for his/her child’s participation in the study, b) the parent will sign a consent form for his/her own participation in the study, and c) the child will also give his/her assent after the provision of age-appropriate information by the researchers. The Parent Informed Consent form will be accompanied by an information sheet containing the project’s details, and the name and the address of the responsible scientist in each partner country. A brief presentation of the rationale and the nature of the study will be given to the children by researchers in the classrooms.
The parent questionnaires will be delivered to the parents by their child in sealed envelopes along with an informational letter explaining the purpose of the research and two consent forms, one concerning child’s participation and the other parental participation in the study. Consenting parents that will complete the questionnaire will be provided with the choice to either return it by post or deliver it to school by their child (in sealed envelopes).
In the classroom setting it will be clearly said to the children by the researchers that their participation is fully voluntary; the fact that they can withdraw their participation at any time of the research without any further explanation will be also stressed. Alongside with this oral information, participating children will assent to participate in the study after they have been provided with age-appropriate written information on the study.
For the samples of children who dropped-out school and their parents that will be approached in person and data collection will be performed through structured interviews, an informed consent form is anticipated to be signed by each parent in order to provide her/his consent for both his/her own participation as well as for her/his child’s participation. These children will also give their assent after they have been provided with age-appropriate written information on the study. In the case of separated/divorced parents, the consent will be given by the parent who has the custody of the child as described by current national legislation for research with children (especially at school settings) in most of the countries involved.
The Informed Consent and Parent Information Sheet as well as the Child Assent Form/Information Sheet presented in this proposal are written in English. Therefore, they should be considered as Exemplars to be translated, for the production of the respectful documents that will be written in the participating countries’ official languages after the beginning of the project.

Data Protection: Even though a matched-sample design is going to be used, collection of data will be performed in a fully anonymous manner. For matching purposes, each pair of the parent-child questionnaires will be pre-coded with a unique code (compiled by non-personal information, namely, Country/City/Serial Number); the nature of the code, thus, will not allow the identification of the participants afterwards. As regards to completed questionnaires and the databases with the encoded information, at national level, each partner will undertake the responsibility to store them in a safe place and restrict the access only to fully authorized personnel. The same responsibility for the whole Balkan database will be assigned to the Coordinator of the project. 

Data ownership: Issues concerning data ownership and their use will be clarified in every detail in a Consortium Agreement between the Coordinator and the partners that is going to be signed upon approval of the present proposal. In general, national data ownership holds with the national focus-point of the country while data from all Balkan countries will belong to the whole Consortium.


Protection of the children and Benefits due to the implementation of the project: There are no sensitive issues related to the report of identified child abuse, as the group administration of the questionnaires in conjunction with the anonymity of provided information can’t bear any harmful consequences in the children’s life at an individual level.
On the other hand, abused or neglected children will be given the opportunity to ask for help if they wish, since after the completion of the questionnaire, useful resources for abused/neglected children will be provided to all the children (e.g. national children welfare services and phone numbers). In cases of abuse/neglect disclosure on behalf of the child, issues that are related with official reporting of CAN will strictly follow the laws and regulations that are valid in each partner country and every possible measure to protect these children will be taken.
In the case of children becoming upset during their participation in the project, the project’s methodological planning will permit the appropriate handling of the situation. Namely, the interviewers, trained psychologists and other social scientists themselves, will have received appropriate for each country’s needs training in order to be able to deal with such situations. The interviewers during questionnaire delivery will be accompanied by a person from the local institution responsible for the project, which will also be able to provide the necessary support, if required. In addition, in the context of the project, there will be already formed by the time of research implementation a local network of institutions and organizations working on child protection issues available to intervene immediately, and, thus, such network will be able to provide a more long-lasting support if needed.

Researchers’ Training: All of ethical principles mentioned above have been taken into account during the design of the research proposal; even though collection of data will be undertaken from experienced researchers, special trainings have been provisioned in both international and national levels in order for an ethically culturally sound and methodologically identical conduct of research in all of the participating countries, to be ensured.

Minority issues: Guidelines for administration of instruments to be used in this study are developed from a child right's perspective with the intent to guide researchers to modify the tools in such a way that will render them culturally sensitive results. Both instruments’ Manuals will be translated in the language of each partner country (and in the language of substantial minorities of these countries, if different) and culturally validated. Training of researchers who will apply the instruments to participants will be based on these Manuals. In the case of disagreement between partners for minority issues, at a first degree, an ad hoc Committee consisting from the two involved partner countries and the Coordinator will be responsible to address the problem. In the case the disagreements involve the Coordinator, the third party will be pointed by the Evaluator. At a second level or in the case of other major minority issues arising at any moment during the execution of the project, the National Advisory Board for ethical issues should provide corrective interventions. If necessary, the National Advisory Board should ask the contribution of national experts on cultural issues.

Dissemination: In all published materials, significant focus will be given to ethical issues of the study. Such a clear and extensive reference will additionally support rising of awareness about ethical issues related to research and practice with abuse and neglected children in each participating country. This will also enhance the added European value of this study as it will contribute to harmonization of processes regarding ethical issues in Balkan countries.

Research Involving Developing Countries: Although not generally included in the list of developing countries, the Consortium that will carry out the present study consists from some south-eastern European countries included by the European Committee in the group of Low-income countries; thus, ethical issues concerning developing countries should be considered. Specifically, it should be noted that the present study is considered to offer benefits for the community as public schools, adolescents and families of children in adolescence which will get sensitized on CAN issues. Furthermore, children who have dropped out school and their families (this group is expected to include minority children) will also have access to analogous information, as researchers will track their location and have a direct contact with them for the purposes of the study.
Nevertheless, in those countries the translation/cultural validation process of instruments and the subsequent researchers’ national training will ensure that local values and beliefs are been fully respected and that dissemination of anti-violence material’s content as well as its administration will be conducted beginning from dominant cultural beliefs and targeting to a smooth transformation of traditional values towards contemporary human rights perspectives. Moreover, Low-income European countries are to be benefited by BECAN project since it will entail strengthening of local child protection services in countries with great need as well as provision of valuable information for planning ahead of services and recourses on child care and protection.