Feasibility Study of a Behavioral Parent Intervention to Support Self-management in Pediatric Typ 1 Diabetes

HbA1c values taken during diabetes clinic visits, registered in the national diabetes registry.

This is a questionnaire that aims to measure health related quality of life in children living with chronic conditions. The parent version comprises 37 items concerning aspects of how the condition may affect the child in every-day-life, such as whether the child is worried about his/her future, if he/she spends time with friends. It is scored using five ordinal response categories ranging from "never" to "always." The negative oriented items are coded 4 ("never") to 0 ("always") whereas the positive oriented questions are inverted, so that higher score indicates higher quality of life.

Number of day per week of physical activity. Information taken during diabetes clinic visits, and registered in the national diabetes registry.

This instrument measures quality of life for parents who have children with a chronic disorder. It includes 36 items concerning physical, emotional, social and cognitive functions as well as daily activities, family relations, communication and family worry. Items are answered on a five-grade scale from 0 = never a problem, to 4 = almost always a problem. These result for each item is transformed so that 0 = 100, 1 = 75, 2 = 50, 3 = 25, 4 = 0, and the sum score is divided by the number of items, so that higher score indicates higher quality of life.

This is a 16-item measure that aim to measure aspects of parenting self-regulation, representing the degree to which participants perceive themselves as efficacious and competent in their role as parents. The scale includes 16 items covering the four subdomains of self-efficacy, personal agency, self-sufficiency and self-management. Items are rated on a scale from 1 = strongly disagree, to 5 = strongly agree.

This 2-item questionnaire is developed by the research group and aims to serve as a parent-reported proxy for the two key self-management behaviors: taking insulin and handling high and low blood glucose values. In percentages from 0-100%, parents are asked to estimate to what extent their child 1) takes insulin and 2) handles high and low blood glucose values, in relation to all the times these behaviors are required.

This questionnaire is developed by this research group and based on common diabetes-specific themes of parental, behavioral challenges reported by parents in an interview study conducted by the group. In 12 items, parents are asked to rate how often they experience a set of challenges on a Likert scale from 0 = never, to 4 = always. These items cover four domains 1) parent worry and frustration, 2) talking, asking and reminding 3) child resistance to self-management routines, 4) child resistance to communication about self-management. This is a pilot use of the questionnaire, testing the items before deciding on future validation and psychometric evaluation. We will also use it to look at participants responses over time at a qualitative, clinical and explorative level and to investigate how the domains relate to eachother, to glycemic control and how/if responses change over time.

This 7-item version of the GAD questionnaire is a short measure of symptoms of anxiety. Participants are asked how often they have been bothered by a set of anxiety symptoms the last 2 weeks ranging from 0=not at all, to 7=daily. The measure will serve as a control variable in mediation analyses.

This 15-item questionnaire targets family conflicts about diabetes self-management tasks. Parents are asked how often they argue with their children about a range of different self-management routines on a scale from 0=never, 1=sometimes and 2=almost always. The sum score is multiplied by 50 giving a maximum score of 100. The last update of the English version from 2023 was translated into Swedish by this research team in 2024.

This is the 10 item version of the standardized measurement of stress, the PSS-10. Participants are asked how often they have experienced a set of stress symptoms during the last month, ranging from 0=never to 4=very often.

Parents answer six questions about parenting practices over the last two weeks. Items are rated on a seven point Likert scale from 'Never' (coded as 1) to 'Many times a day' (coded 7), resulting in a range of 6-42 with higher scores indicating greater use of parenting skills.

TiT is the percentage of time that blood glucose levels have been within the target interval 4-8 mmol/l during the last 2 weeks.

This data will be taken from the national diabetes registry (NDR), and via the Glooko online glucose system.

The mean glucose level during the past 2 weeks. This data will be taken from the national diabetes registry (NDR), and gathered via the Glooko online glucose system.

Standard deviation of blood glucose levels during the past 2 weeks. This data will be taken from the national diabetes registry (NDR), and gathered via the Glooko online glucose system.

Percentage of time during the past two weeks when blood glucose values have reached below 3 mmol/l. This data will be gathered via the Glooko online glucose system.

Number of incidents of ketoacidosis as registered in the national diabetes registry.

Number of incidents of hypoglycemia as registered in National Diabetes Registry.

Number of visits registered at the National Diabetes Registry.

CSQ is a cross-treatment questionnaire that aims to measure patient-reported satisfaction with the treatment they have received. This version of the CSQ includes 8 items that ask participants to rate their satisfaction on a 4-point scale where higher scores indicates higher satisfaction.

This is a 37 item questionnaire that aims to measure health related quality of life in children living with chronic conditions. Added to this questionnaire is the diabetes module with 10 diabetes-specific items. Questions concern aspects of how often the condition affects different aspects of every-day-life, such as whether the child feels lonely due to his/her condition, or if he/she is bothered by the medical treatment. It is scored using five ordinal response categories ranging from "never" to "always." The negative oriented items are coded 4 ("never") to 0 ("always") whereas the positive oriented questions are inverted, so that higher score indicates higher health related quality of life.

This 15-item questionnaire targets family conflicts about diabetes self-management tasks. Children/adolescents are asked how often they argue with their parents about a range of different self-management routines on a scale from 0=never, 1=sometimes and 2=almost always. The sum score is multiplied by 50 giving a maximum score of 100, with a higher score indicating more conflicts. The last update of the English version from 2023 was translated into Swedish by this research team in 2024.

Percentage of time the past 2 weeks when blood glucose levels have reached above 13.9 mmol/l. This data will be gathered via the Glooko online glucose system.

HbA1c values taken during diabetes clinic visits, registered in the national diabetes registry.

Number of day per week of physical activity. Information taken during diabetes clinic visits, and registered in the national diabetes registry.

This is a questionnaire that aims to measure health related quality of life in children living with chronic conditions. The parent version comprises 37 items concerning aspects of how the condition may affect the child in every-day-life, such as whether the child is worried about his/her future, if he/she spends time with friends. It is scored using five ordinal response categories ranging from "never" to "always." The negative oriented items are coded 4 ("never") to 0 ("always") whereas the positive oriented questions are inverted, so that higher score indicates higher quality of life.

This instrument measures quality of life for parents who have children with a chronic disorder. It includes 36 items concerning physical, emotional, social and cognitive functions as well as daily activities, family relations, communication and family worry. Items are answered on a five-grade scale from 0 = never a problem, to 4 = almost always a problem. These result for each item is transformed so that 0 = 100, 1 = 75, 2 = 50, 3 = 25, 4 = 0, and the sum score is divided by the number of items, so that higher score indicates higher quality of life.

This is a 16-item measure that aim to measure aspects of parenting self-regulation, representing the degree to which participants perceive themselves as efficacious and competent in their role as parents. The scale includes 16 items covering the four subdomains of self-efficacy, personal agency, self-sufficiency and self-management. Items are rated on a scale from 1 = strongly disagree, to 5 = strongly agree.

This 2-item questionnaire is developed by the research group and aims to serve as a parent-reported proxy for the two key self-management behaviors: taking insulin and handling high and low blood glucose values. In percentages from 0-100%, parents are asked to estimate to what extent their child 1) takes insulin and 2) handles high and low blood glucose values, in relation to all the times these behaviors are required.

This questionnaire is developed by this research group and based on common diabetes-specific themes of parental, behavioral challenges reported by parents in an interview study conducted by the group. In 12 items, parents are asked to rate how often they experience a set of challenges on a Likert scale from 0 = never, to 4 = always. These items cover four domains 1) parent worry and frustration, 2) talking, asking and reminding 3) child resistance to self-management routines, 4) child resistance to communication about self-management. This is a pilot use of the questionnaire, testing the items before deciding on future validation and psychometric evaluation. We will also use it to look at participants responses over time at a qualitative, clinical and explorative level and to investigate how the domains relate to eachother, to glycemic control and how/if responses change over time.

This 7-item version of the GAD questionnaire is a short measure of symptoms of anxiety. Participants are asked how often they have been bothered by a set of anxiety symptoms the last 2 weeks ranging from 0=not at all, to 7=daily. The measure will serve as a control variable in mediation analyses.

This 15-item questionnaire targets family conflicts about diabetes self-management tasks. Parents are asked how often they argue with their children about a range of different self-management routines on a scale from 0=never, 1=sometimes and 2=almost always. The sum score is multiplied by 50 giving a maximum score of 100. The last update of the English version from 2023 was translated into Swedish by this research team in 2024.

This is the 10 item version of the standardized measurement of stress, the PSS-10. Participants are asked how often they have experienced a set of stress symptoms during the last month, ranging from 0=never to 4=very often.

TiT is the percentage of time that blood glucose levels have been within the target interval 4-8 mmol/l during the last 2 weeks.

This data will be taken from the national diabetes registry (NDR), and will also be gathered repeatedly during the intervention via the Glooko online glucose system.

Number of visits registered at the National Diabetes Registry.

Parents answer six questions about parenting practices over the last two weeks. Items are rated on a seven point Likert scale from 'Never' (coded as 1) to 'Many times a day' (coded 7), resulting in a range of 6-42 with higher scores indicating greater use of parenting skills.

This questionnaire is developed by this research group and based on common diabetes-specific themes of parental, behavioral challenges reported by parents in an interview study conducted by the group. In 12 items, parents are asked to rate how often they experience a set of challenges on a Likert scale from 0 = never, to 4 = always. These items cover four domains 1) parent worry and frustration, 2) talking, asking and reminding 3) child resistance to self-management routines, 4) child resistance to communication about self-management. This is a pilot use of the questionnaire, testing the items before deciding on future validation and psychometric evaluation. We will also use it to look at participants responses over time at a qualitative, clinical and explorative level and to investigate how the domains relate to eachother, to glycemic control and how/if responses change over time.

This 2-item questionnaire is developed by the research group and aims to serve as a parent-reported proxy for the two key self-management behaviors: taking insulin and handling high and low blood glucose values. In percentages from 0-100%, parents are asked to estimate to what extent their child 1) takes insulin and 2) handles high and low blood glucose values, in relation to all the times these behaviors are required.

The mean glucose level during the past 2 weeks. This data will be taken from the national diabetes registry (NDR), and gathered via the Glooko online glucose system.

Standard deviation of blood glucose levels during the past 2 weeks. This data will be taken from the national diabetes registry (NDR), and via the Glooko online glucose system.

Percentage of time during the past two weeks when blood glucose values have reached below 3 mmol/l. This data will be gathered via the Glooko online glucose system.

Number of incidents of ketoacidosis registered in the National Diabetes Registry.

Number of incidents of hypoglycemia as registered in National Diabetes Registry.

This questionnaire is newly developed by the research group and is to be piloted in the current study. The length of questionnaire is adapted to individual CBT treatments depending on the number of treatment components that are presented. One week after a new behavioral strategy and an associated assignment have been presented to the participants, they are asked to rate their engagement according to the following three domains:

1. Frequency: how many days they have used the strategy (1 - 7),
2. Intensity: how much effort they have put down in using it (0 = none, to 5 = a lot).
3. Usability: how helpful they perceive the strategy to be for them (0 = not at all, to 5 = very).

The total score for each of the 3 domains are divided by the number of strategies, to reach a mean score for each of the three domains. Results will be examined at a qualitative level to guide further refinement of the intervention.

This 7-item version of the GAD questionnaire is a short measure of symptoms of anxiety. Participants are asked how often they have been bothered by a set of anxiety symptoms the last 2 weeks ranging from 0=not at all, to 7=daily. The measure will serve as a control variable in mediation analyses.

Percentage of time the past 2 weeks when blood glucose levels have reached above 13.9 mmol/l. This data will be gathered via the Glooko online glucose system.

Percentage of time the past 2 weeks when blood glucose levels have reached above 13.9 mmol/l. This data will be gathered via the Glooko online glucose system.

Standard deviation of blood glucose levels during the past 2 weeks. This data will gathered via the Glooko online glucose system.

The mean glucose level during the past 2 weeks. This data will be gathered via the Glooko online glucose system.

TiT is the percentage of time that blood glucose levels have been within the target interval 4-8 mmol/l during the last 2 weeks. This data will be gathered via the Glooko online glucose system.

Percentage of time during the past two weeks when blood glucose values have reached below 3 mmol/l. This data will be gathered via the Glooko online glucose system.