Better informed consent – getting ready to consult
Law for Life’s new project with the Gender Identity Development Service (GIDS), based at the Tavistock and Portman NHS Foundation Trust, is well underway. GIDS is an NHS specialist service for children and adolescents experiencing difficulties with their gender identity. The aim of the project is to better understand the legal framework underpinning informed medical consent amongst children and young people; to identify barriers to reaching informed consent amongst those experiencing gender dysphoria; and to understand the information needs of children and young people with gender dysphoria referred to GIDS.
A key part of that work involves consulting with the young people and their parents and carers to find out what they think about the existing information offered by GIDS and what else they need to know.
Developing the survey
We decided an online survey would be a good way to go about this, as survey respondents could take part anonymously, when and wherever they wanted. We worked with staff at GIDS to develop the questions for the survey, as well as researching health literacy and best practice on questionnaires for children. The questions are underpinned by Law for Life’s legal capability approach – what do young people and their parents need to know and be able to do in order to give informed consent?
There have been several iterations of the survey. Ultimately we decided to produce separate surveys for young people, and for parents / carers so that we could ask more specific questions whilst keeping each survey as short as it could be.
Pre-testing with young people
We were delighted that GIDS offered to road-test the survey for young people at a stakeholder meeting. Pre-testing surveys with their intended user group is considered good practice, particularly with children who may experience or understand things differently from an older group. We were very grateful to hear the comments and suggestions the young people made. And we acted on them.
What the young people said
The young people at the stakeholder meeting were positive about the survey and genuinely engaged with it. They made useful suggestions for changes to the wording of some questions. But they said it was dull. Which is a fair point! Surveys generally are. We tried to address this by reducing the length of the survey by removing some ‘nice to know but not crucial’ questions and by changing the structure and layout of questions to make them quicker to navigate, in the hope that the survey would be a little more snappy.
Consultation as education?
One of the highlights of the meeting was a suggestion that at the end of the survey there is a link to GIDS patient information so that young people can look things up if they realise that they don’t know as much as they wanted to. We have acted on this suggestion.
This is a lovely outcome. It seems that the survey was thought provoking and raised questions. Which means that the survey is not just an information gathering tool for us but has evolved to become an educative tool for the young people / parents taking it – so that those involved in helping us to improve the informed consent process for others also become better informed themselves.
GIDS will send the survey out over the autumn. We’re looking forward to seeing what young people and their parents have to say. It will inform our recommendations to GIDS for improved or new information to improve the capacity of the young people who are referred to the GIDS service, and their parents, to consent to medical treatment.
Published: 28 August 2018