Evaluate a Family Behavioral Intervention for Diabetes
Evaluate a Family Behavioral Intervention for Diabetes
Introduction: The objectives of this study were to qualitatively evaluate a dyadic adolescent-parent type 1 diabetes (T1D) program developed to prevent deterioration in diabetes care among adolescents with T1D and provide recommendations for program refinement.
Method: Thirteen adolescent-parent dyads who participated in the larger randomized controlled trial, the TeamWork Project, were interviewed regarding their perceptions of their participation in the program and current T1D challenges. Interviews were transcribed and coded to establish broad themes.
Results: Adolescents and parents thought the TeamWork Project sessions were helpful and taught them new information. Five themes catalog findings from the qualitative interviews: TeamWork content, TeamWork structure, transition of responsibility, current and future challenges, and future intervention considerations.
Discussion: Addressing T1D challenges as a parent-adolescent dyad via a behavioral clinic program is helpful to families during adolescence. Findings highlight the utility of qualitative evaluation to tailor interventions for the unique challenges related to pediatric chronic illness.
Type 1 diabetes (T1D) is a common pediatric chronic illness that requires adherence to a complex care regimen involving daily blood glucose (BG) monitoring, insulin administration, and regulation of nutrition and physical activity (American Diabetes Association, 2013). Deterioration in adherence and glycemic control is common during adolescence as responsibilities for diabetes care tasks begin to shift from parent to child (Greco et al., 1990, Johnson et al., 1992). Adolescents strive for more independence while at the same time engaging in more risk-taking behavior, which may result in decreased adherence behaviors such as fewer BG checks, inconsistent carbohydrate counting, and missed insulin doses. A dynamic array of parent and child factors can affect disease management. For example, maternal involvement in adolescents' T1D care that is collaborative in nature, rather than controlling, has been shown to relate to better adherence and glycemic control (Wiebe et al., 2005), and adolescents who display positive qualities, such as friendliness and honesty, perceive greater family cohesion and exhibit better disease management (Mackey et al., 2011).
Behavioral interventions that incorporate multiple family members and address communication, problem solving, and coping strategies have the potential to reduce adolescent and parent difficulties related to T1D management and decrease the likelihood of declines in T1D management during adolescence (Hampson et al., 2000). Several such interventions for adolescents with T1D have demonstrated partial success. In one intervention, adolescents participated in a coping skills training program, after which they exhibited short-term improvements in quality of life and glycemic control (Grey et al., 1998). In another clinic-based parent-adolescent program, parents randomized to the intervention group demonstrated less deterioration in involvement during insulin administration and blood glucose monitoring and adolescents exhibited improved glycemic control at 1-year follow up (Anderson, Brackett, Ho, & Laffel, 1999). Finally, using behavioral family systems therapy, adolescents have demonstrated long-term improvements in communication, family interaction, and problem solving (Wysocki et al., 2008). Continued development and evaluation of behavioral interventions such as these may delineate additional therapeutic elements that maintain or improve glycemic control during adolescence.
In addition to conducting rigorous randomized clinical trials (RCTs) to determine the efficacy of such interventions, qualitative research methods can be used as an adjunct and, in particular, can aid program development, evaluation, and refinement. Qualitative studies are used widely among pediatric populations prior to intervention development to identify the challenging aspects of disease management that might benefit from intervention, clarify target behaviors and outcomes, and anticipate barriers to intervention delivery and acceptance (Sandelowski, 1996). Qualitative methods have been used to assess the unique challenges and needs of adolescents with T1D transitioning to adult medical facilities (Price et al., 2011), outline the developmental pathways of disease cognitions and behavior among parents of children with food allergy (DunnGalvin, Gaffney, & Hourihane, 2009), and identify the stressors and self-management responsibilities of minority children and adolescents with asthma (Martin, Beebe, Lopez, & Faux, 2010). Researchers used results from individual interviews and focus groups to make informed decisions when developing intervention protocols and delivery methods.
Qualitative methodology is also useful after an intervention has been implemented to evaluate process variables such as intervention delivery, identify populations that most benefit from the intervention, and incorporate successful modifications that maximize the efficacy of the intervention (Sandelowski, 1996). These methods have been used frequently among a variety of pediatric populations and provide unique insight regarding the intervention experience. For example, Monaghan and colleagues (2011) conducted detailed qualitative interviews with parents of young children with T1D who participated in a telephone-based support intervention, which elicited parents' desire for more educational and supportive intervention components closer to the time of diagnosis (Monaghan, Sanders, Kelly, Cogen, & Streisand, 2011). Hartmann and colleagues (2007) completed phone interviews with families who participated in an asthma intervention Web site and found that parents believed the program changed their attitude about their interactions with their child's physician and prompted them to be more active participants in clinic appointments (Hartmann et al., 2007). Similarly, Buelow (2007)) used an iterative model during which parents of children with epilepsy were interviewed after each stage of intervention development, providing crucial insight regarding the length of time needed for parent education and the importance of establishing partnerships with the health care team. Based on their findings, the researchers of these three studies believed they were able to improve future interventions and employ a broader context when interpreting quantitative data.
Collectively these studies suggest that the use of qualitative methods among a variety of pediatric populations is an essential method for developing and refining behavioral interventions. The goal of the present study was to qualitatively evaluate and refine a coping skills prevention program developed to prevent deterioration in glycemic control among adolescents with T1D. In-depth interviews with a subset of adolescents and their parents were used to (a) evaluate participants' experiences with and perceptions of the acceptability and usefulness of the coping skills and education sessions and (b) identify issues that adolescents and parents would like addressed in a future program to be developed for older adolescents. Results of the qualitative analysis were synthesized with quantitative data to provide clear feedback regarding the coping skills and education sessions and recommendations for future interventions.
Abstract and Introduction
Abstract
Introduction: The objectives of this study were to qualitatively evaluate a dyadic adolescent-parent type 1 diabetes (T1D) program developed to prevent deterioration in diabetes care among adolescents with T1D and provide recommendations for program refinement.
Method: Thirteen adolescent-parent dyads who participated in the larger randomized controlled trial, the TeamWork Project, were interviewed regarding their perceptions of their participation in the program and current T1D challenges. Interviews were transcribed and coded to establish broad themes.
Results: Adolescents and parents thought the TeamWork Project sessions were helpful and taught them new information. Five themes catalog findings from the qualitative interviews: TeamWork content, TeamWork structure, transition of responsibility, current and future challenges, and future intervention considerations.
Discussion: Addressing T1D challenges as a parent-adolescent dyad via a behavioral clinic program is helpful to families during adolescence. Findings highlight the utility of qualitative evaluation to tailor interventions for the unique challenges related to pediatric chronic illness.
Introduction
Type 1 diabetes (T1D) is a common pediatric chronic illness that requires adherence to a complex care regimen involving daily blood glucose (BG) monitoring, insulin administration, and regulation of nutrition and physical activity (American Diabetes Association, 2013). Deterioration in adherence and glycemic control is common during adolescence as responsibilities for diabetes care tasks begin to shift from parent to child (Greco et al., 1990, Johnson et al., 1992). Adolescents strive for more independence while at the same time engaging in more risk-taking behavior, which may result in decreased adherence behaviors such as fewer BG checks, inconsistent carbohydrate counting, and missed insulin doses. A dynamic array of parent and child factors can affect disease management. For example, maternal involvement in adolescents' T1D care that is collaborative in nature, rather than controlling, has been shown to relate to better adherence and glycemic control (Wiebe et al., 2005), and adolescents who display positive qualities, such as friendliness and honesty, perceive greater family cohesion and exhibit better disease management (Mackey et al., 2011).
Behavioral interventions that incorporate multiple family members and address communication, problem solving, and coping strategies have the potential to reduce adolescent and parent difficulties related to T1D management and decrease the likelihood of declines in T1D management during adolescence (Hampson et al., 2000). Several such interventions for adolescents with T1D have demonstrated partial success. In one intervention, adolescents participated in a coping skills training program, after which they exhibited short-term improvements in quality of life and glycemic control (Grey et al., 1998). In another clinic-based parent-adolescent program, parents randomized to the intervention group demonstrated less deterioration in involvement during insulin administration and blood glucose monitoring and adolescents exhibited improved glycemic control at 1-year follow up (Anderson, Brackett, Ho, & Laffel, 1999). Finally, using behavioral family systems therapy, adolescents have demonstrated long-term improvements in communication, family interaction, and problem solving (Wysocki et al., 2008). Continued development and evaluation of behavioral interventions such as these may delineate additional therapeutic elements that maintain or improve glycemic control during adolescence.
In addition to conducting rigorous randomized clinical trials (RCTs) to determine the efficacy of such interventions, qualitative research methods can be used as an adjunct and, in particular, can aid program development, evaluation, and refinement. Qualitative studies are used widely among pediatric populations prior to intervention development to identify the challenging aspects of disease management that might benefit from intervention, clarify target behaviors and outcomes, and anticipate barriers to intervention delivery and acceptance (Sandelowski, 1996). Qualitative methods have been used to assess the unique challenges and needs of adolescents with T1D transitioning to adult medical facilities (Price et al., 2011), outline the developmental pathways of disease cognitions and behavior among parents of children with food allergy (DunnGalvin, Gaffney, & Hourihane, 2009), and identify the stressors and self-management responsibilities of minority children and adolescents with asthma (Martin, Beebe, Lopez, & Faux, 2010). Researchers used results from individual interviews and focus groups to make informed decisions when developing intervention protocols and delivery methods.
Qualitative methodology is also useful after an intervention has been implemented to evaluate process variables such as intervention delivery, identify populations that most benefit from the intervention, and incorporate successful modifications that maximize the efficacy of the intervention (Sandelowski, 1996). These methods have been used frequently among a variety of pediatric populations and provide unique insight regarding the intervention experience. For example, Monaghan and colleagues (2011) conducted detailed qualitative interviews with parents of young children with T1D who participated in a telephone-based support intervention, which elicited parents' desire for more educational and supportive intervention components closer to the time of diagnosis (Monaghan, Sanders, Kelly, Cogen, & Streisand, 2011). Hartmann and colleagues (2007) completed phone interviews with families who participated in an asthma intervention Web site and found that parents believed the program changed their attitude about their interactions with their child's physician and prompted them to be more active participants in clinic appointments (Hartmann et al., 2007). Similarly, Buelow (2007)) used an iterative model during which parents of children with epilepsy were interviewed after each stage of intervention development, providing crucial insight regarding the length of time needed for parent education and the importance of establishing partnerships with the health care team. Based on their findings, the researchers of these three studies believed they were able to improve future interventions and employ a broader context when interpreting quantitative data.
Collectively these studies suggest that the use of qualitative methods among a variety of pediatric populations is an essential method for developing and refining behavioral interventions. The goal of the present study was to qualitatively evaluate and refine a coping skills prevention program developed to prevent deterioration in glycemic control among adolescents with T1D. In-depth interviews with a subset of adolescents and their parents were used to (a) evaluate participants' experiences with and perceptions of the acceptability and usefulness of the coping skills and education sessions and (b) identify issues that adolescents and parents would like addressed in a future program to be developed for older adolescents. Results of the qualitative analysis were synthesized with quantitative data to provide clear feedback regarding the coping skills and education sessions and recommendations for future interventions.
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