Objective
Our study aims to find out about the children’s and adolescents’ perceptions and experiences of screening for type 1 diabetes. We will be doing this by using social and behavioral sciences methods appropriate for the age of the participants. We pursue 4 objectives:
Objective 1 (Expectations). We will explore the expectations of children and adolescents: what they understand about screening, what they feel about the process that they are facing, and whether they feel prepared for the screening process and receiving screening results. We will also touch upon decision-making around screening – how families make the decision to screen.
Objective 2 (Experiences). We will then explore the physical and emotional experiences of screening. We will find out from received a negative type 1 diabetes result: how they felt about ‘technical’ (for example blood sample taking, screening arrangements) and about their emotional reactions and interactions with family members and healthcare professionals.
Objective 3 (Impacts). We will also focus on the reactions of children and adolescents who received a positive (for early stage) type 1 diabetes result: about their emotions, thoughts, impact on life and relations.
Objective 4. (Supports). We will then find out about strategies for support, appropriate to the children’s age, characteristics, preferences and family context.
Background Rationale
The number of children and adolescents living with type 1 diabetes across the world is increasing. Several European countries are now involved in screening children for type 1 diabetes in their populations. The screening test involves checking for autoimmune antibodies in blood, to help to treat and prepare children and their families for this disease early.
Yet, many children and adolescents participating in type 1 diabetes screening do not have a voice in decisions around screening. They have little knowledge of what to expect and are rarely asked about their experiences of screening. Those diagnosed with early stages T1D (before symptoms develop) as a result of screening need special supports. Our understanding of these issues is very limited.
We would like to give children and adolescents a voice in this screening. We want to check their emotional reactions towards screening as well as their understanding and views of it.
Description of Project
What is the problem?
The number of children and adolescents living with type 1 diabetes across the world is increasing. Several European countries are now involved in screening children for type 1 diabetes in their populations. The screening test involves checking for autoimmune antibodies in blood, to help to treat and prepare children and their families for this disease early.
Yet, many children and adolescents participating in type 1 diabetes screening do not have a voice in decisions around screening, have little knowledge of what to expect and are rarely asked about their experiences of screening. Those diagnosed with early stages T1D (before symptoms develop) as a result of screening need special supports yet our understanding of these issues is very limited.
What do we want to do?
We would like to give children and adolescents a voice in this screening. We want to check their emotional reactions towards screening as well as their understanding and views of it. Experiences of those who took part in the screening and of those who have early stages of type 1 diabetes are particularly important to focus on. Understanding their experiences in the context of family life will help us to create supportive strategies for those screened and receiving a diagnosis.
How will we do it?
Centres in three countries where screening occurs as part of a larger program will take part in our 2 years long study. We will use play, stories, interviews, and questionnaires to understand the views of children and adolescents better.
We plan to ask children and adolescents aged 7-17 about their experiences at two timepoints: Before and After screening. To help with this, the researchers will first ask for their consent and introduce themselves and the study to the families. Those who are about to have screening will be invited to play, or participate in stories and interviews, dependent on their age group, in order to explore their expectations and understanding of what is to happen (Before). They will also answer two short questionnaires about their emotions. After screening some of them will have tested negative and will be asked through play, stories and interviews about their experience of being screened (After). A small number who tested as having the type 1 diabetes antibodies and early stages of the disease will be invited to play and participate in stories, interviews and questionnaires, to find out about the ways this result has influenced them. On the basis of this, we will determine which support different groups should have and benefit from.
The total number of children and adolescents participating in our study (from both timepoints and all three countries) is likely to be around 150. This includes 90 children and adolescents (30 x from each centre) who will participate at Before timepoint. A few negatively tested from the this group as well as 60 children and adolescents (20 x from each centre) positively tested for early stages type 1 diabetes - will participate at After timepoint. Some children and adolescents will have close relatives who live with type 1 diabetes, others not; the participants will also come from different sociodemographic groups.
What will we do with the results?
We intend to keep the analysis of the results anonymous. Several types and profiles of children’s responses will be used to create supportive strategies such as screening story booklets and family toolkits. The results of our study will help healthcare professionals, parents and children.
Anticipated Outcome
In the end of our study, we will develop a ‘support profile’ for different groups of children and adolescents. We will also develop a toolkit for family conversations about screening and also an (illustrated) story about screening and early stages of type 1 diabetes. We will talk about our results on different occasions and for different audiences such as type 1 diabetes events as social media. The study is original and by doing it we hope to help education, improve family support and give healthcare professionals, teachers and other practitioners better information about screening for type 1 diabetes.
Relevance to T1D
Our study has a new approach to understanding screening and early stage of type 1 diabetes. As such, it does not lead to any immediate clinical impact (impact on healthcare practice). However, it helps to find out about behaviors and feelings of children and adolescents, when they go through the screening process. The results might be useful for psychologists and pediatricians working with different groups of children and adolescents, in type 1 diabetes screening programs and beyond.