Objective
The overall objective of the proposed project is to develop and pilot The T1D Parent Check-in, an early intervention for families of children newly diagnosed with Type 1 Diabetes (T1D) that promotes diabetes-related resilience.
The intervention will consist of 3 brief modules that can be flexibly delivered by existing members of the diabetes care team (social workers, licensed mental health clinicians, and/or clinical psychologists). Input from families on the acceptability of the intervention will be sought through all phases of the project.
The primary objective of the proposed project is to develop an innovative, 3-session, T1D-specific intervention (The T1D Parent Check-in) for parents of newly diagnosed patients that can be delivered via telehealth. The proposed intervention is based on The Parent Check-in, a brief parenting intervention designed to promote parenting skills on dimensions of autonomy support, structure and involvement that facilitate children’s adjustment and motivation. The T1D Parent Check-in follows the framework of The Parent Check-in and will be developed in consultation with Dr. Wendy Grolnick, primary developer of The Parent Check-in. The T1D Parent Check-in also integrates skills from cognitive-behavioral therapy, customized to be highly relevant to families with a child 3-12 months from new diagnosis of T1D.
The secondary objective of the proposed project is to conduct a multi-site pilot of the The T1D Parent Check-in at two pediatric diabetes clinics with up to 25 families of patients ages 8-17 diagnosed with T1D within the past 3-12 months. A treatment-as-usual (TAU) group of 25 families will also complete outcome assessments for pre- and post-intervention comparison.
The first goal of the pilot study is to evaluate the feasibility and acceptability of the intervention. We will examine 1) feasibility via enrollment and retention rates and qualitative assessment of barriers to completion, and 2) acceptability via treatment satisfaction ratings and qualitative analysis of open-ended questions to intervention and TAU groups.
The second goal of the pilot study is to assess initial results of the The T1D Parent Check-in on families' adjustment to new diagnosis and diabetes-related outcomes. To inform planning for efficacy testing in a larger Randomized Controlled Trial (RCT), we will analyze the effects of the intervention on parenting style, health mindsets, problem-solving, diabetes-related distress and family conflict, parental stress, and parent and child adjustment to children’s chronic illness diagnosis. Health outcomes, including possible changes in children’s A1C, Time in Range (TIR), insulin regimens, and diabetes-related emergency department visits will be assessed throughout the study. Finally, we will analyze group differences between the intervention and TAU groups on key outcomes.
Background Rationale
There is increased recognition of the importance of supporting the psychosocial needs of families of children and adolescents with Type 1 Diabetes (T1D). A diagnosis of pediatric T1D necessitates shifts in families’ practical, financial, and emotional needs. Families are tasked with learning and applying diabetes education, making decisions about diabetes-specific technologies, attending frequent doctors' appointments, and navigating the day-to-day complications of blood sugar management. Parents of children with T1D are likely to face psychological distress related to worry about their child’s health, disruption in family routine, difficulty balancing the demands of diabetes with other family goals and activities, and increased financial burden. While general and diabetes-specific distress tend to be highest around diagnosis, parents continue to report distress for months and years as new challenges and developmental stages unfold.
Research has linked parents’ diabetes-related distress to multiple downstream effects. Parental diabetes distress has been associated with more controlling parenting (e.g., parents taking over tasks, ignoring children’s opinions, using manipulation, guilt, and shame) that are, in turn, associated with children’s lower health-related quality of life, higher family conflict, sub-optimal glycemic control, and children’s mental health concerns, including depression. Diabetes-related distress is endorsed by nearly one-third of youth with T1D and is associated with lower blood glucose monitoring, impaired quality of life, and sub-optimal glycemic control that may persist into adulthood. Given the impact of parent stress and parenting styles on diabetes outcomes, a family-based approach to T1D care is considered gold standard.
There exist few research based interventions to promote the resilience and psychological well-being of families with T1D and to protect against negative mental and physical health outcomes. Those that are available are often group-based, require high levels of commitment, and lack underlying theoretical frameworks—factors that relate to high drop-out rates, variable participant engagement, and inconsistent effects. Many parenting interventions have not been created in a format that is easily disseminated to clinics and patients who have less access to mental and behavioral health providers and services. Further, recent evidence has underscored the importance of prevention and early intervention in optimizing youth’s long-term glycemic control, promoting resilience, and reducing the development of psychological disorders.
The T1D Parent Check-in is based on research from Self-Determination Theory showing that parenting that is high on autonomy support (vs. control) is associated with higher adolescent self-treatment competence and higher adherence to treatment in T1D. These in, in turn, are associated with better glycemic control. The proposed intervention also integrates skills training from cognitive-behavioral therapy (CBT) including cognitive restructuring (with a specific focus on health mindsets) and problem-solving. Individuals with “fixed” health mindsets tend to believe there is little they can do to influence their health. Those with “growth” health mindsets tend to believe health is improvable through strategy, effort, and support from others. Mindset interventions have been effective in changing individuals’ mindsets from more fixed towards growth-oriented a. Problem-solving among patients and caregivers is a critical skill for the effective management of T1D and has associations with children’s glycemic control over time.
Taken together, there is a critical need for (1) prevention-based, (2) flexibly-delivered, and (3) theory-driven parenting interventions that are tailored individually to families and provided shortly after initial T1D diagnosis. To address these needs, we propose theT1D Parent Check-in—a brief, preventative, theory-based, customizable parenting intervention that will be designed collaboratively with patients and could be delivered effectively to all families with T1D. We expect that the T1D Parent Check-in will contribute to decreased diabetes-related distress and family conflict, and increased diabetes-related resilience by promoting positive parenting practices, problem-solving skills, and growth-related health mindsets (i.e., healthy attributional style) within families with T1D.
Description of Project
The proposed project is a pilot study of an innovative, 3-session, intervention for parents of patients ages 8-17 diagnosed with Type 1 diabetes within the past year. The T1D Parent Check-in is based on The Parent Check-in, a brief parenting intervention designed to promote parenting skills on dimensions of autonomy support, structure and involvement that facilitate children’s adjustment and self-regulation of important behaviors. The intervention also integrates skills from cognitive-behavioral therapy and is customized to be highly relevant to families within the first year of a new diagnosis of T1D. The T1D Parent Check-in is intended to promote diabetes-related resilience and positive psychological and medical outcomes among families of children with T1D.
The T1D Parent Check-in provides parents of children ages 8-17 diagnosed with T1D within the past year with parent guidance to support family communication and skills that improve diabetes management and decrease diabetes-related distress. The pilot study is designed to assess the feasibility and acceptability of the intervention by getting feedback from participating families through all phases of the intervention and study design. The pilot study will also gather preliminary data on outcomes of the The T1D Parent Check-in, including its effect on parenting, parental diabetes-related distress, diabetes-related family conflict, problem solving, parental self-efficacy and resilience, as well as on children's diabetes management outcomes, including HbA1c and time in range.
The longer-term goal of the proposed project is to inform planning of a larger clinical trial. Should The T1D Parent Check-in prove effective in decreasing diabetes-related distress and family conflict and increasing diabetes resilience and positive psychological and medical outcomes, it could be manualized with training for dissemination by JDRF and implemented in diabetes clinics even without direct access to behavioral health specialists.
Anticipated Outcome
We expect that the The T1D Parent Check-in will lead to: 1) A reduction in diabetes-related distress and family conflict among families who participate in the intervention; 2) An increase in positive parenting practices, problem-solving skills, diabetes-related resilience and growth-oriented health-mindsets among families who participate in the intervention; 3) high ratings of treatment acceptability (treatment satisfaction ratings); and 4) more positive indices of adjustment for families who participate in the intervention compared to a control group.
Relevance to T1D
The T1D Parent Check-in has the potential to set newly diagnosed families up for success by decreasing diabetes-related distress and family conflict and increasing diabetes-related resilience by promoting positive parenting practices, problem-solving skills, and growth-related health mindsets. By targeting these factors specifically, we anticipate significant improvements in families’ early adjustment to T1D and expect the skills learned to be preventative of diabetes burn-out and corresponding symptoms of anxiety and depression for parents and children. Better adjustment is expected to, in turn, contribute to better glycemic control. The T1D Parent Check-in is a preventative intervention that has the potential to mitigate strain on the mental health system, to provide specialized support to families with T1D, and to prevent dangerous and costly medical outcomes by giving families the skills needed to achieve and maintain better glycemic control. The T1D Parent Check-in offers an easy-to-implement, scalable framework that can be integrated into existing pediatric diabetes clinics and be delivered seamlessly to families via telehealth. The intervention is designed to be delivered by any member of the psychosocial team in diabetes clinics, including diabetes educators, social workers, and/or clinical psychologists. Further, by reducing barriers to access, this intervention may be provided to diverse families across geographical regions as they adjust to pediatric T1D. The proposed pilot study is designed to gather data and get feedback and input from families toward refining the intervention to better achieve these aims and to inform a future larger-scale clinical trial.