Special Considerations Involved when doing Research with Children

September 25, 2019

Research with children

Many of the ethics questions that relate to adults apply equally to children, and you can find examples throughout this guidebook. This section is specifically about the differences between children and adults in research about ethics questions. There is a burgeoning research literature on this – see the suggested.

The ethics of research with children is a balance. On the one hand, the focus is on ways of preventing and reducing harms in research and ensuring adequate protection of children and young people. On the other hand, there is concern about the risks and harms of silencing and excluding children from research about their views, experiences and participation.

There are, however, ongoing debates in the academic literature about the ethics of social research with children, related to different disciplinary perspectives (for example, developmental psychology and the sociology of childhood) and about the differences between children and adults in research. The ethics principles that apply to research with adults – such as that of ensuring freely given fully informed consent, and the right to withdraw from research participation apply equally to children, but there are four additional provisos specific to research involving children:
  1. children’s competencies, perceptions and frameworks of reference, which may differ according to factors including – but not only – their age, may differ from those of adults;
  2. children’s potential vulnerability to exploitation in interaction with adults, and adults’ specific responsibilities towards children;
  3. the differential power relationships between adult researcher and child participant; and
  4. the role of adult gatekeepers in mediating access to children, with concomitant ethical implications about informed consent.
The key points are as follows:
  1. As a researcher, you have to get initial consent from gatekeepers – parents and/or teachers or others with a duty of care for the child – and you need to consider who you have to get permission from. This permission does not mean the child has consented to participate, but it allows you to seek consent from the child. 
  2. You should get active consent from each individual child – not from children as a group (because individuals in the group could feel pressured to take part against their wishes). If you are not going to get consent from each individual child, your approach is very likely to be questioned by an ethics committee, and so you need really clear justification. 
  3. As a general rule, remember that the child is the participant, not the gatekeeper, and so ethics principles about consent should always apply to the child – whatever the child’s age. As with adults, start from a position of assuming competence, don’t assume children are incompetent, but recognise the need to adapt your methods for seeking consent to their level of understanding. See our section on defining and assessing competence to consent.
  4. For more information about the permission and approval that may be required for research involving children, see our section does your research involve children?

Consent and assent Informed consent
To give informed consent or assent, participants must have adequate information in a format they can easily understand. It is the responsibility of the person or organisation conducting the research or evaluation to provide this in a way that is accessible to the participant. When working with children and young people (or participants in other categories, e.g., those with low English literacy), this may require visual or audio methods. If the research includes children and young people of different age groups, they may require recruitment and project information tailored to their particular age group. Information provided to children and young people should include any limits to confidentiality. 
The difference between consent and assent
Guidance often mentions children’s assent, particularly the US literature. However, it is not a useful concept for several reasons:
  1. Assent refers to the agreement by minors who have no legal right to consent. However, the Gillick Ruling does not specifically exclude any child as too young to be Gillick competent. Children, therefore, who can make informed ’wise’ Gillick competent decisions are giving consent, rather than assent.
  2. Assent refers to the agreement by children who understand some but not all the main points required for consent. But this begs the question of whether a partly informed decision can count as a decision at all.
  3. Finally, assent can be taken to mean ’at least not refusing’. But that is very different from actually assenting – i.e. positively agreeing. Children may be too afraid, confused, or ignored to refuse. So the term assent may be misused to cover children’s refusal.
Consent is an ongoing process
Consent and assent are an ongoing process, not a one-off event. Children and young people can withdraw from research and evaluation at any time, including after data collection has begun. They may find it difficult to withdraw their assent due to the power imbalances between children or children. To ensure they can enact their right to withdraw their assent, it should be explained exactly how to do so rather than just that they can do so. Attention should also be given to children and young people’s verbal and behavioural cues, and verbal reassurance should be provided that they can withdraw from the research or evaluation without consequence if they become disengaged (in addition to this being made clear in the project information provided to participants).
Practical considerations
Be aware of issues relating to consent, privacy and confidentiality when collecting data from children. Children and/or their carers must be able to provide informed consent, and depending on the context of the child's engagement with the service, care should be taken to factor in vulnerability and potential harm from data collection. For example, if the child is engaged with the service as a result of some family dysfunction, being asked to specifically recall incidents of conflict or neglect may cause distress to the child. As with any ethical data collection process, children have the right to refuse participation in evaluation projects, even if their parent has provided consent. Issues of privacy and confidentiality are especially significant when collecting data from children because of the power imbalance between children and adults While in most circumstances, this type of disclosure is unlikely, it is important for service providers who plan on collecting data from children to prepare for this possibility.
Conclusion
Meeting ethical requirements is a key element of any research or evaluation project. Planning, developing clear materials for participants and ensuring all staff have a good understanding of the importance of these principles will help ensure that research and evaluation are conducted ethically. Adequate time should be allowed for the recruitment and consent process, including providing information to parents, children and young people, and giving them time to consider their participation. If conducting evaluation activities as part of a program or class, suitable alternative provisions should be made for students who choose not to participate. In one study about separated families, the researchers usually asked the residential parent. They asked both parents when a child was co-parented (living part-time in two households) or saw both parents often. Yet they found that gaining consent from both parents could often be both impossible and unethical because it was intrusive. They decided to work with the family dynamics, trying not to interfere with them or alter them for the sake of the research.
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