Process for Inclusive Research

Inclusive research means involving the people whom the research concerns in every stage of the research process.

Why is inclusive research important?

 


Previous research shows that when children and families are involved in designing research and data collection instruments, such as surveys, the research becomes more useful.

Experience from research indicates that involving children and families improves the dissemination of research findings within the community.

Within CHILD, the goal is to involve the individuals whom the research concerns—i.e., children, families, and professionals—to identify research questions based on the participants’ needs.

By involving children, families, and professionals:

  • It is ensured that questions important to children and families are identified and prioritized.
  • There is support for the dissemination of research findings.
  • Researchers receive help to translate research results into practical actions where they can be beneficial.
  • Resources are focused on research that is useful for and can impact children, families, and professionals.

How can children and families be involved?


There are different ways to involve children and families in research; they can:

  • Share their views on research priorities.
  • Participate in advisory groups (reference groups) within research projects.
  • Review draft questionnaires.
  • Take part in focus groups.
  • Contribute to the design of research methods.
  • Participate in pilot projects.
  • Assist in presenting research results.
  • Help disseminate research findings.

What does an inclusive atmosphere/culture mean?


An inclusive atmosphere/culture means:

  • Researchers work towards diversity, accept differences, and value the participation of children and families.
  • An inclusive approach permeates the research environment and the researchers’ perspectives.

What structures support inclusive approaches in research?

  • Sufficient resources are allocated in the project budgets to cover the costs of involving children, families, and professionals in the research process.
  • The use of various communication strategies that support inclusive research.
  • Communication is adapted and understandable to all involved, for example by avoiding technical jargon. Since achieving consensus on terminology is often challenging, it is important to discuss this with children and families.

What practices support inclusive research?


  • Children and families receive support and knowledge within the research team.
  • Mentors can be offered.
  • Expectations and responsibilities are clear.
  • The research team’s capacity is shaped according to inclusive research practices.
  • Policy documents for inclusive research are developed.

Review of inclusive research

  • The outcomes and their impact on children and families are assessed.
  • Successes are acknowledged and celebrated.
  • Review of results is used to ensure continuous learning.

We will ensure that children and their families play a central role as participants in the research, that their contributions are respected, and that their voices are acknowledged throughout the entire research process.

We will ensure that the efforts of children and their families are valued and utilized, and that they are compensated for their participation.

This guide aims to provide researchers with suggestions on how to include and engage children and their families in inclusive research. Since inclusive research is a relatively new concept, we first provide a definition of what inclusive research entails before practically describing the ways in which children, their families, and professionals can be involved in developing the skills needed to participate on equal terms in the research.

The definition of the inclusive research


Inclusive research refers to engaging researchers, professionals, and individuals who are the end-users of the research (the child and their family) throughout the entire research process for the joint initiation, development, and implementation of a research project, data analysis, and sharing or publication of the results. By participating in inclusive research, the involved individuals become co-researchers.

 

The foundations of inclusive research:

  • Children and/or their families are regarded as end-users with knowledge, assets, skills, and strengths.
  • Barriers between children and/or their families and professionals are recognized and can be avoided.
  • Children’s abilities are recognized and utilized.
  • A reciprocal approach creates added value for all individuals involved.
  • Professional networks and interest groups are included.
  • Children and their families work together with researchers towards common goals.
  • Children and their families are involved in aspects of the research that best match their skills, interests, and experiences.

(adapted from Social Care Institute for Excellence, 2013)

Benefits of inclusive research


Inclusive research is increasingly seen as an effective way to ensure the influence of children, families, and professionals on research (Jung, Harrow, & Pharoah, 2012). Inclusive research demonstrates that research is a collective rather than a one-person project. Collaboration ensures that the questions are relevant and important to children and their families (i.e., questions originate from them), that answers are sought from the right sources (i.e., the right people are identified as informants), and that appropriate research methods are used.

Requirements for inclusive research


Examples of basic prerequisites for developing inclusive research:

  1. Strategic partnerships to ensure resources are used where they have the greatest impact.
  2. Interdisciplinary research.
  3. Listening to, engaging, and involving children and/or their families in the planning phase, implementation of results in practice, and tailored information.


Principles of inclusive research


Equal treatment

Everyone has assets. No group or individual is more important than another in the research team. All members have skills, abilities, and other qualities. This requires a balance between professionals and children and/or their families.

 

Openness

Ensures that all individuals understand the expectations for participating in inclusive research.

 

Diversity

Diversity and inclusion are important values. It is evident that those who require special support are more likely to be excluded.

 

Accessibility

Accessibility is a prerequisite for engaging individuals on equal terms in inclusive research and a fundamental principle for ensuring equal participation. Therefore, it is important that information is provided in an appropriate way so that everyone can participate, and that the language used is understandable to all.

 

Reciprocity

Ensuring that all individuals receive something in return, and that they feel valued and needed. Everyone involved in the research shares responsibility for its implementation.

Implementation of inclusive research for children and families


Implementation of inclusive research involves four key aspects: adapting the research in terms of culture, structure, practice, and review, as well as understanding individual strengths, contributions, and needs.

 

Culture

Organizational values and functioning

  • Ensure that inclusive research is embedded within the organization.
  • Ensure that the culture is built on a shared understanding of inclusive research and principles for implementation.
  • Ensure that the research team commits to the core principles of inclusive research.
  • Develop a culture of being risk-aware rather than risk-averse. This requires the research team to be aware of risks, prepared, and to have a planned approach for managing risks.

 

Structure

How the research is organized

  • Identify and involve the right people from the start.
  • Compensate participants involved in inclusive research—such as covering travel expenses, refreshments, etc.
  • Ensure sufficient resources are available to cover the costs of activities—it can be time-consuming and resource-intensive.
  • Ensure there is a communication strategy.
  • Ensure the language used is understandable to everyone involved. Flexible strategies using a variety of communication methods (e.g., social media) are needed.
  • Build upon existing structures and resources.

 

Implementation

How the organization and its researchers carry out their work

  • Ensure that children receive the support they need by including more children with the same disability in the research team and offering mentors if required.
  • Set expectations (such as group conditions) and responsibilities for attendance and engagement from the start to foster a sense of community.
  • Ensure that all individuals can contact each other so that no one is excluded (e.g., email and contact details).
  • Ensure that everyone has sufficient information to participate in decision-making.
  • Ensure that all involved understand the meaning of inclusive research and what participation entails.
  • There may be a need for an independent person (rather than a researcher) to ensure everyone’s voice is heard. Make sure this person is accepted by all.

Assistants or mentors can help children engage, which may involve:

  • Identifying support staff/volunteers.
  • Helping the child prepare for meetings.
  • Assisting in overcoming language barriers.
  • Advocating for inclusive research practices and pointing out when communication has been unclear or tasks unrealistic or ambiguous.
  • Encouraging the individual to communicate with researchers through written and oral feedback, depending on their communication abilities and preferences.
  • Discussing with the individual after research meetings.
  • Ensuring that there is a policy for inclusive research when a research project is initiated.

 

Review

Monitoring and assessment of outcomes and impacts

  • Monitor progress, highlight achievements and milestones (celebrate these), and identify areas for improvement.
  • Collaborate on reviews and evaluations.
  • Use review results to ensure continuous learning.
  • Demonstrate how inclusive research can make an impact.

Process for inclusive research within CHILD

Figure 1. The figure, shown in the image to the right, explains the process of inclusive research.

The first part focuses on initiating and planning, which consists of three components: developing research questions, developing research plans, and reviewing applications and grants.

The second part concerns the implementation and also consists of three components: including children and families as research participants, including children and families as researchers, and including children and families in an advisory group.

The third and final part focuses on dissemination and evaluation of the different components. These include presenting research collaboratively, evaluating outcomes and impact, and dissemination through networks. All of these parts will be covered in the document.

What resources can help?

Contact information for researchers in CHILD