Objective
Collectively, three aims will establish how families experience screening for the first stages of T1D and how they prefer monitoring to be implemented. We aim to:
1. Characterise both children’s and caregivers’ perceptions and experiences of T1D screening and monitoring, both for those with a first-degree relative and those in the general population.
2. Explore children’s and family preferences for clinical monitoring practices and determine what supports will optimise the uptake of more challenging screening and monitoring procedures such as blood draws.
3. Investigate the perspectives of the research nurses who conduct screening and monitoring to understand what other factors, in addition to those detected by the children and caregivers, may improve the experiences for children and families.
Background Rationale
Considerable quantitative data using surveys and validated questionnaires reveal the emotions of carers when their child develops the first stages of type 1 diabetes before insulin is required. However, there is minimal data directly from the children as to how they themselves experience this event and the subsequent monitoring. This proposed research aims to close this important knowledge gap so that we can design screening and monitoring programs that are both child and family focussed.
Consistent with international data our work in Australia shows that carers of children with a family member with T1D and who are being followed in a pregnancy- birth cohort, are motivated primarily by the ability to monitor their child for the first stages of T1D. Importantly, the participating children who were over 3 years of age sometimes felt differently from their carers about what matters to them. International data reveals the considerable anxiety that can develop in carers when the first stages of T1D (autoantibodies to the insulin producing cells) are detected in their children in both families from the general population and families with a member with T1D. Carers of TEDDY children followed in USA and Europe, who were identified with the first stages of T1D, often developed considerable anxiety. However they over all adapted better with lower parenting stress at the diagnosis of clinical T1D than that experienced in carers from the general population who had not been followed before the diagnosis of T1D. A large- regional screening study from Germany showed that initial stress associated with the identification of the first stages of T1D was a lot less that seen in families of children who were diagnosed outside of the screening program. Dietary changes and glucose monitoring by carers increases when the early stages of T1D are detected. Unsurprisingly, families without a history of T1D have different experiences, different risk perception, and different monitoring practices than families with first-hand experience. All prior data to our knowledge has used so – called quantitative methods such as the validated questionnaires of anxiety.
Quantitative data offer valuable insights regarding emotions in relation to screening, the detection of the early stages of T1D and monitoring. However so – called qualitative methods, that we will use in this project, by interviewing participants individually, gives them a voice to share their lived experiences, allowing researchers to gather rich in-depth data and potentially gain a more comprehensive understanding about screening, diagnosis and monitoring. Qualitative methods are particularly useful for implementation research providing data to explain how and why health interventions may succeed or fail. Interviewing children aged 9 – 11 years and their carers will provide valuable data about their experiences of diabetes monitoring that can inform strategies to optimise our proposed national screening program. Such indepth data cannot be obtained using quantitative methods.
Description of Project
This project aims to understand the perspectives and preferences of children and their families regarding childhood monitoring for early-stage type 1 diabetes (T1D). The over-all goal is to inform the design of a national screening program and optimize the delivery of monitoring and care. Our research will therefore focus on the impact of an earlier diagnosis of T1D, the children’s and families' experiences during ongoing monitoring, and their preferences as to how this should be delivered.
The study is structured around three key aims: 1) assessing the impact and experiences of diagnosis of the first stages of T1D on affected children and their families, 2) exploring children’s and family preferences for monitoring and follow up and 3) gathering insights from health professionals on enhancing care experiences for families.
Here, we propose to interview a substantial sample of children, their caregivers, and research nurses from all three Australian screening and monitoring cohorts. We will therefore provide new qualitative data around a national screening and monitoring program for T1D.
Anticipated Outcome
We anticipate that:
1) 60 children aged 9 - 13 years will provide different experiences and insights than those that can be obtained from their carers, both children who are identified from the general population and those with a first degree relative with T1D.
2) Experiences, anxieties and preferences for monitoring will differ between 60 carers of children with early stages of T1D who are identified from the general population and those living in families with a person with T1D.
3) Preferences for monitoring will differ between 60 carers of children with early stages of T1D who are identified from the general population and those living in families with a person with T1D.
4) Research nurses perspectives will reinforce the experiences of the families for whom they have been following.
Relevance to T1D
Routine screening and monitoring of the first stages of T1D is being modelled, tested and planned in Australia, UK, Europe and the USA with several justifications: (i) to allow early detection and prevent the severe complication of diabetic ketoacidosis at the clinical onset (ii) to provide a smoother path to the onset of insulin requirements and (iii) to identify people who may benefit from immune and other therapies to delay or prevent progression to T1D. However, little is known about how children and their caregivers feel about early diagnosis of the first stages, what support and information families need, and their preferences for how clinical monitoring and support are provided. Needs are likely to differ according to family history of T1D, metropolitan, regional or remote location, and cultural background.