Susan Sullivan-Bolyai

Personal and family factors associated with quality of life in adolescents with diabetes.

OBJECTIVE Quality of life is an important criterion for assessing outcomes of treatment in chronic illness related to psychosocial well-being. The purpose of this study was to evaluate the factors that influence quality of life in adolescents with IDDM. RESEARCH DESIGN AND METHODS Self-reports were obtained from 52 adolescents (age 13-20 years, mean 16.1 ± 1.9 [mean ± SD], diabetes duration 8.2 ± 3.4 years, 49% female) using the following scales: Diabetes Quality of Life for Youths, Childrens Depression Inventory, Issues in Coping with Diabetes, Diabetes Family Behavior Scale, Family Adaptability and Cohesion, Self-Efficacy for Diabetes, and the Adolescent Coping Orientation. Metabolic control was measured by HbA1c. RESULTS Teenagers whose diabetes had the greater impact (R2 = 0.48) and were less satisfied (R2 = 0.45) felt that management was more difficult (r = 0.56) and that diabetes was more upsetting (r = 0.63). They also used fewer rebellion strategies for coping (r = −0.44), had lower diabetes self-efficacy (r = −0.36), and had more depressive symptoms (r = 0.61). Higher impact was also associated with higher family warmth and caring (r = −0.54) and lower family adaptability (r = −0.42). Teenagers who were more worried (R2 = 0.37) about their diabetes felt that management was more difficult (r = 0.40) and that diabetes was more upsetting (r = 0.58), and they used less rebellion (r = −0.49) and more ventilation (r = 0.42) to cope, had lower diabetes (r = −0.40) and medical (r = −0.30) self-efficacy, were more depressed (r = 0.55), and their families were less warm and caring (r = −0.33). HbA1c levels were not associated with quality of life or any other psychosocial factors except in teenagers who perceived their families as providing more guidance and control. These teenagers had lower HbA1c values than those whose families were less involved. CONCLUSIONS Even teenagers who are successfully achieving HbA1c goals of therapy may perceive diabetes as having a negative impact on their lives, be depressed, and find diabetes difficult to manage. Diabetes treatment teams need to pay equal attention to the psychosocial needs to the quiet, nonrebellious teen with well-controlled diabetes from a supportive family as they do to the rebellious adolescent with poorly controlled diabetes.

Short-term Effects of Coping Skills Training as Adjunct to Intensive Therapy in Adolescents

OBJECTIVE Given the urgent need to develop effective programs that improve the ability for adolescents to achieve metabolic control equivalent to programs studied in the Diabetes. Control and Complications Trial, we have undertaken a clinical trial to determine if a behavioral intervention (coping skills training [CST]) combined with intensive diabetes management can improve metabolic control and quality of life in adolescents implementing intensive therapy regimens. RESEARCH DESIGN AND METHODS A total of 65 youths between the ages of 13 and 20 years, who elected to initiate intensive insulin therapy, were randomly assigned to one of two groups: the intensive management with CST group and the intensive management without CST group. CST consists of a series of small group efforts designed to teach adolescents the coping skills of social problem-solving, social skills training, cognitive behavior modification, and conflict resolution. Data were collected at pre-intervention and at 3 months following the use of the Self-Efficacy for Diabetes scale, Childrens Depression Inventory, Issues in Coping with IDDM scale, and the Diabetes Quality of Life: Youth scale. Clinical data (HbA1c, adverse effects) were collected monthly. RESULTS The experimental and control groups were comparable on all measures at baseline. Results show that adolescents who received CST had lower HbA1c and better diabetes self-efficacy and were less upset about coping with diabetes than adolescents receiving intensive management alone. In addition, adolescents who received the CST found it easier to cope with diabetes and experienced less of a negative impact of diabetes on quality of life than those who did not receive CST. CONCLUSIONS CST is useful in improving not only an adolescents metabolic control, but also their quality of life. As more pediatric providers aim for improved control, in adolescents with diabetes, the addition of this behavioral intervention may be helpful in achieving metabolic and life goals.

Fathers' reflections on parenting young children with type 1 diabetes.

PURPOSE:To describe fathers’ experiences in parenting and managing the care of their young children with type 1 diabetes. DESIGN AND METHODS:This qualitative descriptive study used 16 open-ended, in-depth interviews with 14 purposively selected, involved, educated, stably employed fathers of 15 children younger than 10 years old. The fathers were asked to describe their perspective of the initial diagnosis, how they learned diabetes care, their day-to-day care and parenting experiences, and what strategies they used in the day-to-day management. Data were managed using NVivo software and analyzed using principles of naturalistic inquiry and qualitative content analysis. RESULTS:The overarching theme was “From sadness to action,” with six categories emerging: (1) “shock and awe” (after diagnosis), (2) quick response to the diagnosis and learning diabetes care: “suck it up and do it,” (3) “staying in the loop” (practicing the skills, tasks, and responsibilities of diabetes management), (4) “partnerships in care” (tag teaming or co-parenting), (5) active participation (being actively involved in their children’s day-to-day care and benefiting from participating in this care), and (6) mantra for living with diabetes: child first, diabetes second. CLINICAL IMPLICATIONS:Nurses working with children with diabetes can use the results of this study to better understand the role of fathers in the care of these children. Fathers underscored the importance of practicing diabetes care-related tasks to improve their confidence when caring for children alone. Their practical and philosophical strategies for managing their children’s chronic illness have recently been incorporated into a parent mentor intervention for children newly diagnosed with type 1 diabetes.

Social Support to Empower Parents (STEP) An Intervention for Parents of Young Children Newly Diagnosed With Type 1 Diabetes

Purpose The purpose of this study was to test the efficacy of a social support intervention with parents of children <13 years old newly diagnosed with type 1 diabetes mellitus (T1DM). Methods For this randomized, controlled clinical trial, 10 parent mentors of children diagnosed with T1DM ≥1 year and 60 parent participants were recruited from 2 pediatric diabetes centers. Mentors were trained to provide social support (home visits and phone calls) for 12 months to families in the experimental arm (32 mothers). Control group parents (28 mothers) received the phone number of an experienced parent (not trained to give social support) to call as needed. Findings Mothers in the experimental and control arms differed at baseline only in birth order of the child with T1DM. The 2 groups did not differ significantly at 3, 6, or 12 months in parent concern, confidence, worry, impact on the family, or perceived social support. Mothers in the experimental arm identified the parent mentor as someone they would seek for advice and issues regarding growth and development, sleep, eating habits, and identification of community agencies. Parent mentors consistently referred mothers to health care providers for advice on medications and treatments but helped them incorporate this advice into day-to-day management. Conclusion Mothers in the experimental arm valued the mentors’ help in adjusting to the diagnosis, but this value was not measured by the study instruments. Focus group research is under way to clarify the concept of parent mentor social support and to develop a social support measurement tool.

Maternal management behaviors for young children with type 1 diabetes

Purpose To describe the process that mothers raising young (0-4 years old) children who are newly diagnosed with type 1 diabetes move through to attain the necessary skills to care for their children. Study Design and Methods A mixed methods design was used, including qualitative interviews with 28 mothers of young children with type 1 diabetes. Principles of naturalistic inquiry were used to guide the data collection process, management, and analysis of the qualitative findings. Results The process paralleled two of three management approaches and associated behaviors previously described by Gallo and Knafl. Strict adherence behaviors included rigidly following the team recommendations and avoiding strange environments outside the home. Flexible adherence behaviors strove to bring spontaneity back into family life. Selective adherence was not used by this population. Clinical Implications Nurses working with these mothers can provide information and support to help them transition from using strict adherence to the more user-friendly flexible adherence, while avoiding the pitfalls of the possibly harmful third approach of selective adherence. Nurses need to remember to praise the parents’ efforts at managing their children’s diabetes, for our acknowledgment of their work is empowering and affirming.

Parents of children newly diagnosed with type 1 diabetes: experiences with social support and family management.

Purpose The purpose of this mixed-methods descriptive study with parents of children newly diagnosed with type 1 diabetes was to explore their experiences with peer social support following the Social Support to Empower Parents (STEP) intervention and the usefulness of the Family Management Measure (FaMM) in this population. Methods Parents who were in the experimental arm of STEP were recruited. Qualitative interviews were conducted (n = 21), and 11 parents completed the FaMM, a quantitative family-functioning measure. Qualitative content data analysis was conducted and compared to the descriptive measure analysis. Findings Three themes were identified: availability, practical tips, and common ground. Five FaMM subscales were reliable (α > .80) in this small sample. Conclusions The findings illustrate that the STEP intervention is helpful, providing the participants with emotional, affirmational, and informational social support. The use of the FaMM is a first step in assessing family management in families with children with type 1 diabetes.

Development and pilot testing of a parent education intervention for type 1 diabetes: Parent education through simulation-diabetes

Purpose To purpose of the pilot study was to evaluate the use of a pediatric human patient simulator (HPS) to teach parents diabetes management for their children newly diagnosed with type 1 diabetes, referred to as Parent Education Through Simulation–Diabetes. Methods A focus group study and 2 pilot studies (1-group study and a randomized 2-group study) were used to develop and test a teaching intervention. Parents were recruited from the Pediatric Diabetes Clinic at UMass Memorial Medical Center. A brainstorming group (n = 6) discussed the simulator concept and what modifications would be necessary to enhance parent teaching; the authors also developed the initial hypoglycemia and hyperglycemia teaching vignettes. Two focus groups (n = 13) discussed the acceptance of using a simulator and the timing and content of the teaching sessions. Based on their recommendations, a 1-group pretest-posttest pilot was conducted with parents (n = 10) receiving hypoglycemia education enhanced with the HPS, followed by a randomized 2-group pilot study (n = 16). Findings The focus group participants enthusiastically supported the use of the pediatric HPS after diagnosis and made recommendations for the timing and content of the teaching sessions. Major findings from the pilot work included (1) successful recruitment of 16 participants from only 1 site within 6 weeks, (2) instrument reliability demonstrated for all scales, and (3) mean change from baseline in the predicted direction for all measures. Conclusions The HPS has the potential of providing parents an innovative means of learning diabetes management through visualization during the early months after diagnosis and so warrants a powered study to determine its efficacy.

Self-management of Type 1 Diabetes Across Adolescence

Purpose The purpose of this study was to examine differences in self-management behaviors (Collaboration with Parents, Diabetes Care Activities, Diabetes Problem Solving, Diabetes Communication, and Goals) between early, middle, and late adolescence. The role of regimen and gender as covariates in self-management behaviors was also examined. Methods This was a secondary analysis with a cross-sectional descriptive survey design. A sample of 504 participants ages 13 to 21 years from the Self-Management of Diabetes–Adolescent instrument development study were analyzed to determine self-management behaviors in early, middle, and late adolescence. This study was partially guided by the Self and Family Management Framework. This framework contains broad conceptual areas that are thought to pose a risk to or have a protective influence on self-management and family management behaviors and associated outcomes. Results Significant findings included a decline between early, middle, and late adolescence in the Collaboration with Parents scale as well as an increase between early and late adolescence on the Diabetes Problem Solving scale. Regimen was a significant covariate for Collaboration with Parents, Diabetes Care Activities, and Diabetes Problem Solving, and gender was a significant covariate for Diabetes Care Activities and Diabetes Communication. Conclusions Clinicians should consider the influence of adolescent stage and development on self-management when educating adolescents. Youth and their families should be educated to consider the implications that regimen will have on daily self-management when making treatment decisions. Furthermore, gender variations can necessitate different educational approaches to meet different needs. Future research should identify other variables that can influence self-management at different points across adolescence.

Parent mentor perspectives on providing social support to empower parents.

Purpose To describe the experience of parent mentors providing a social support intervention to parents of children < 13 years old newly diagnosed with type 1 diabetes mellitus. Methods Qualitative descriptive interviews were conducted with 6 parent mentors (all mothers) who provided social support to 34 mothers and 19 fathers of children newly diagnosed with type 1 diabetes mellitus over a 12-month period. The mentors were trained to provide informational, affirmational, and emotional social support through home visits, phone calls, and/or e-mail. Qualitative content analysis was used to identify themes guided by the Ireys social support framework. Findings The parent mentors described support activities that could be categorized into the 3 types of support defined in the Ireys framework. The parent mentors provided informational support, such as tips for travel, school, parties and family get-togethers, camp resources, and how to advocate for the child. Affirmational support was provided by sharing stories and validating parents’ feelings and experiences. Emotional support was provided by “being there” for the parents. No instances were described where parent mentors were pushed to give advice on medical management issues but were more so used for advice on growth and development, sleep, and healthy eating suggestions. Parent mentors also reported being empowered by the role by helping others. Conclusion Careful selection of parent mentors is a strategy for providing social support to parents of children newly diagnosed with type 1 diabetes mellitus, especially in day-to-day management areas that the health care professionals have not experienced.

Distinguishing Features and Similarities Between Descriptive Phenomenological and Qualitative Description Research

Scholars who research phenomena of concern to the discipline of nursing are challenged with making wise choices about different qualitative research approaches. Ultimately, they want to choose an approach that is best suited to answer their research questions. Such choices are predicated on having made distinctions between qualitative methodology, methods, and analytic frames. In this article, we distinguish two qualitative research approaches widely used for descriptive studies: descriptive phenomenological and qualitative description. Providing a clear basis that highlights the distinguishing features and similarities between descriptive phenomenological and qualitative description research will help students and researchers make more informed choices in deciding upon the most appropriate methodology in qualitative research. We orient the reader to distinguishing features and similarities associated with each approach and the kinds of research questions descriptive phenomenological and qualitative description research address.