{"id":6160,"date":"2020-11-26T00:17:57","date_gmt":"2020-11-25T13:17:57","guid":{"rendered":"https:\/\/childethics.com\/?p=6160"},"modified":"2021-12-07T23:47:50","modified_gmt":"2021-12-07T12:47:50","slug":"including-children-and-young-people-with-cognitive-disability-in-research-about-personal-safety-and-abuse-preventions-by-sally-robinson","status":"publish","type":"post","link":"https:\/\/childethics.com\/case-studies\/including-children-and-young-people-with-cognitive-disability-in-research-about-personal-safety-and-abuse-preventions-by-sally-robinson\/","title":{"rendered":"Including children and young people with cognitive disability in research about personal safety and abuse preventions. By Sally Robinson<\/em>"},"content":{"rendered":"

Our work with children and young people with disability over the past several years has involved carefully building the conditions necessary for including a wide range of children and young people in research about personal safety and abuse prevention. While there is common agreement that children and young people have the right to be supported to give an informed view on matters about their own lives (Lundy & McEvoy, 2012), it is much less common that they are supported to do so on sensitive issues. This case study is about a project we did for the Australian Royal Commission on Institutional Responses to Child Sexual Abuse. The research was focused on what helps children and young people with disability and complex support needs to feel and be safe. You can find the project report in full here<\/a>, and academic papers about it here<\/a> and here<\/a>.<\/p>\n

Directly involving children and young people with disability in research concerning their lives is vital for ensuring that policies and programs are responsive to children\u2019s needs and lived experience (Briggs & Hawkins, 2005; Skattebol et al., 2013; Sloper & Beresford, 2014). Documenting the views and experience of children and young people with disability can also help to mitigate perceived silencing or minimisation of abuse and neglect. For example, their experience of abuse and neglect is sometimes downplayed or marginalised when other competing pressures either within families or organisational management structures are prioritised, when children have challenging behaviour, or when they have non-standard communication, or little or no language to describe harms (Foley et al., 2012; Sloper & Beresford, 2014; Robinson & Graham, 2020; Sobsey & Mansell, 1994). The high rates of harm that children and young people with disability experience means that their participation is all the more important (Briggs & Hawkins, 2005; Mepham, 2010; Stalker & McArthur, 2012).<\/p>\n

The ethical challenge:<\/em><\/strong>
\nAlongside the clear importance of including the perspectives of children and young people with cognitive disability and complex support needs in research of this nature sit several ethical and practical challenges. Not least among these: our focus was quite an abstract concept \u2013 explaining \u2018safety\u2019 to children and young people who experience the world in very concrete terms was challenging. To understand the experiences of children and young people who did not communicate (primarily) through speech required substantial adaptation to standard research methods. Service providers (and some family members) had low expectations of the capabilities of children and young people with disability to contribute to research about their lives, and recruitment was very difficult. We also knew that, given the high rates of harm experienced by children and young people with disability, a percentage of those involved in our study would be abuse-experienced and so considerable caution and sensitivity was needed.<\/p>\n

In summary, the key ethical challenges for our team in this project in working with children and young people with cognitive disability and complex support needs were:<\/p>\n

1. Explaining the concept of safety
\n2. Communication
\n3. Gate-keeping \/ expectations
\n4. Responding effectively to abuse-experienced participants<\/p>\n

Choices made:<\/em><\/strong>
\nIn order to respond to these challenges and understand the diverse perspectives of children and young people with complex support needs, we knew that we would need multiple methods. First, we were aware that children and young people with disability may be less likely to have experience of talking about personal safety than other children their age. We found little previous research and a lack of programs on personal safety education, protective behaviours training or safeguarding initiatives involving children and young people with significant disability. Therefore, we developed supporting resources and processes to explain the concept of personal safety to children with disability as part of the research process.<\/p>\n

Second, to support communication and sharing of experiences, we developed a \u2018toolkit\u2019 of research methods for working with children and their families \u2013 a tailored compendium of research methods. Working with each child or young person and their supporter(s), we identified the methods most likely to resonate with them, and used these in combination to find out how they understood safety and the lack of it in their social worlds.<\/p>\n

Interviews were conducted using a range of tools such as games and stimulus materials such as squishy balls, toys and drawing materials to minimise the formality of the experience and improve the comfort for children and young people. Alongside these more traditional approaches, we also used less direct approaches with some children, to learn from information gathered from and about their daily lives and time shared together with the researcher, supported by contextual information gathered from families\/supporters. Therefore, individual and small group contributions were framed around the use of traditional and non- traditional interview approaches, using a combination over multiple meetings of:<\/p>\n