Evaluation of a protocol for eliciting narrative accounts of pediatric inpatient experiences of care.

OBJECTIVE: To evaluate the measurement properties of a set of six items designed to elicit narrative accounts of pediatric inpatient experience. DATA SOURCES: Data came from 163 participants recruited from a probability-based online panel of U.S. adults. Participants were family members of a child who had an overnight hospital stay in the past 12 months. STUDY DESIGN: Cross-sectional survey with follow-up phone interviews. DATA COLLECTION/EXTRACTION METHODS: Participants completed an online (n = 129) or phone (n = 34) survey about their child's hospitalization experience. The survey contained closed-ended items from the Child Hospital Consumer Assessment of Healthcare Providers and Systems (Child HCAHPS) survey, followed by the six narrative items. Approximately 2 weeks after completing the survey, 47 participants additionally completed a one-hour, semi-structured phone interview, the results of which served as a "gold standard" for evaluating the fidelity of narrative responses. Qualitative content analysis was used to code narrative and interview responses for domains of patient experience and actionability. PRINCIPAL FINDINGS: The average narrative was 248 words (SD = 319). Seventy-nine percent of narratives mentioned a topic included in the Child HCAHPS survey; 89% mentioned a topic not covered by that survey; and 75% included at least one detailed description of an actionable event. Overall, there was 66% correspondence between narrative and interview responses. Correspondence was higher on the phone than in the online condition (75% vs. 59%). CONCLUSIONS: Narratives elicited from rigorously designed multi-item sets can provide detailed, substantive information about pediatric inpatient experiences that hospitals could use to improve child and family experiences during pediatric hospitalization. They add context to closed-ended survey item responses and provide information about experiences of care important to children and families that are not included in quantitative surveys.

Friendship and romantic relationships among emerging adults with and without type 1 diabetes.

OBJECTIVE: To examine whether friendship and romantic relationships of emerging adults with type 1 diabetes differed from those of a comparison group, and to determine whether these relationships were associated with psychological and diabetes health outcomes. METHODS: High school seniors with (n = 122) and without (n = 118) type 1 diabetes were assessed annually for 3 years. Friend and romantic relationship variables, psychological distress, life satisfaction, eating disturbances, and, for those with diabetes, diabetes outcomes were assessed. RESULTS: Those with diabetes reported less friend support but similar friend conflict compared with controls. Aspects of romantic relationships and friend relationships were associated with health outcomes, but there were more effects involving romantic relationships. On some indices, romantic support was more beneficial for controls and romantic conflict was more troublesome for those with diabetes. CONCLUSIONS: Both friendship and romantic relationships were associated with psychological and diabetes outcomes among emerging adults.

Cognitive adaptation theory as a predictor of adjustment to emerging adulthood for youth with and without type 1 diabetes.

OBJECTIVE: The purpose of the study was to determine whether resilience, defined by cognitive adaptation theory, predicted emerging adulthood outcomes among youth with and without type 1 diabetes. METHODS: Youth with (n=118) and without type 1 diabetes (n=122), who were part of a previous longitudinal study during adolescence, completed on-line questionnaires during their senior year of high school and one and two years later. They were average age 18, 53% female, and 93% white. Questionnaires assessed cognitive adaptation theory (CAT) indicators (self-esteem, mastery, optimism) and psychological, relationship, behavioral, vocational, and, for those with diabetes, diabetes outcomes. RESULTS: The CAT index at baseline predicted reduced psychological distress, enhanced psychological well-being, increased friend support, reduced friend conflict, the presence of romantic relationships, reduced likelihood of romantic breakups, higher GPA, higher work satisfaction, and lower work stress during the transition to emerging adulthood. Among those with diabetes, the CAT index predicted better self-care behavior and revealed a marginal relation to better glycemic control. Analyses controlled for baseline levels when appropriate. Findings were stronger one year than two years post high school graduation, and findings were stronger for those with than without diabetes. Youth with diabetes also scored lower on the CAT index than youth without diabetes. CONCLUSIONS: These findings suggest that the implications of CAT include not only psychological health but also relationship, vocational, and diabetes outcomes. Those who score lower on CAT indicators should be identified as children so that interventions designed to enhance resilience can be implemented.

Relations of behavioral autonomy to health outcomes among emerging adults with and without type 1 diabetes.

OBJECTIVE: To examine the relation of behavioral autonomy to psychological, behavioral, and physical health among emerging adults with and without type 1 diabetes. METHODS: High school seniors with (n = 118) and without type 1 diabetes (n = 122) completed online questionnaires for three consecutive years. Behavioral autonomy, psychological health, risk behaviors, and diabetes outcomes were assessed. Regression analyses were conducted to predict Time 2 and 3 outcomes, controlling for Time 1 outcomes. RESULTS: There were no group differences in behavioral autonomy. Behavioral autonomy predicted better psychological health but only for emerging adults without diabetes. Behavioral autonomy was related to increased risk behavior for both groups. Behavioral autonomy was unrelated to self-care but predicted better glycemic control for females. CONCLUSIONS: Behavioral autonomy may be beneficial for psychological health, but is related to increased risk behavior. The implications of behavioral autonomy for emerging adults with type 1 diabetes require careful consideration.

Relationships and health among emerging adults with and without Type 1 diabetes.

OBJECTIVE: The study's goal was to examine the impact of parent and peer relationships on health behaviors and psychological well-being of those with and without Type 1 diabetes over the transition to emerging adulthood. Emerging adulthood is an understudied developmental period and a high-risk period--especially for those with Type 1 diabetes. METHOD: Youth with (n = 117) and without Type 1 diabetes (n = 122) completed questionnaires during their senior year of high school and 1 year later. Measures included supportive and problematic aspects of parent and peer relationships, health behaviors, psychological well-being, and, for those with diabetes, self-care behavior and glycemic control. RESULTS: Prospective multiple and logistic regression analysis revealed that friend conflict was a more potent predictor than friend support of changes in health behaviors and psychological well-being. Parent support was associated with positive changes in psychological well-being and decreases in smoking, whereas parent control was related to increases in smoking and depressive symptoms. There was some evidence of cross-domain buffering such that supportive relationships in one domain buffered adverse effects of problematic relationships in the other domain on health outcomes. CONCLUSIONS: This longitudinal study showed that parent relationships remain an important influence on, and peer relationships continue to influence, the health behaviors and psychological well-being of emerging adults with and without Type 1 diabetes. Parent relationships also have the potential to buffer the adverse effects of difficulties with peers.

Population-level trends in posttreatment cancer survivors' concerns and associated receipt of care: results from the 2006 and 2010 LIVESTRONG surveys.

UNLABELLED: There is a need to better understand the posttreatment concerns of the nearly 14 million survivors of cancer alive in the United States today and their receipt of care. Using data from 2,910 posttreatment survivors of cancer from the 2006 or 2010 LIVESTRONG Surveys, the authors examined physical, emotional, and practical concerns, receipt of care, and trends in these outcomes at the population level. RESULTS: 89% of respondents reported at least one physical concern (67% received associated posttreatment care), 90% reported at least one emotional concern (47% received care), and 45% reported at least one practical concern (36% received care). Female survivors, younger survivors, those who received more intensive treatment, and survivors without health insurance often reported a higher burden of posttreatment concerns though were less likely to have received posttreatment care. These results reinforce the importance of posttreatment survivorship and underscore the need for continued progress in meeting the needs of this population. Efforts to increase the availability of survivorship care are extremely important to improve the chances of people affected by cancer living as well as possible in the posttreatment period.

Early adolescent relationship predictors of emerging adult outcomes: youth with and without type 1 diabetes.

BACKGROUND: Emerging adulthood is a high-risk period for mental health problems and risk behaviors for youth generally and for physical health problems among those with type 1 diabetes. PURPOSE: The purpose of this study was to examine whether adolescents' relationships with parents and friends predict health and risk behaviors during emerging adulthood. METHOD: Youth with and without diabetes were enrolled at average age 12 and followed for 7 years. Parent and friend relationship variables, measured during adolescence, were used to predict emerging adulthood outcomes: depression, risk behavior, and, for those with diabetes, diabetes outcomes. RESULTS: Parent relationship quality predicted decreased depressive symptoms and, for those with diabetes, decreased alcohol use. Parent control predicted increased smoking, reduced college attendance, and, for control participants, increased depressive symptoms. For those with diabetes, parent control predicted decreased depressive symptoms and better self-care. Friend relationship variables predicted few outcomes. CONCLUSIONS: Adolescent parent relationships remain an important influence on emerging adults' lives.

Emerging adults with type 1 diabetes: a comparison to peers without diabetes.

OBJECTIVE: This longitudinal study compared emerging adults with and without type 1 diabetes on life path decisions, health behaviors, and psychological well-being during the transition out of high school. METHODS: Administered questionnaires during the senior year of high school and 1 year later to 117 emerging adults with diabetes and 122 emerging adults without diabetes. Comparisons were conducted with respect to health status, sex, and school status. RESULTS: Those with and without diabetes chose similar life paths and engaged in similar levels of risky behaviors, but disturbed sleep increased for males with diabetes only. Having diabetes was not associated with depressive symptoms, loneliness, or bulimic symptoms, but was associated with lower life satisfaction and lower life purpose over time. CONCLUSIONS: Emerging adults with and without diabetes fare similarly on most dimensions studied during the first year out of high school.

Enhancing cross-system collaboration for caregivers at risk for depression.

In the United States, many health care systems function independently from one another. Increasing coordination across systems has the potential to vastly improve services and patient outcomes, yet implementing these changes can be challenging, requiring increased communication, interaction, and coordination across systems that typically function independently. Parental depression is one health issue that could benefit greatly from a comprehensive systems approach. The Helping Families Raise Healthy Children initiative is a cross-system quality improvement initiative aimed at improving identification and treatment of families faced with the dual challenge of caregiver depression and early childhood developmental delays. Four main techniques were used to foster and sustain cross-system collaboration and communication: cross-system trainings, regular meetings of collaborative partners, a cross-system learning collaborative for service providers, and two cross-system facilitators. The initiative achieved successful cross-system collaboration, suggesting that these methods may be used in other initiatives to foster similar types of collaboration across systems.

Children with diabetes compared to peers: depressed? Distressed? A meta-analytic review.

BACKGROUND: It is not clear from the literature whether children with diabetes have more psychological difficulties than their peers. PURPOSE: This study aims to use meta-analysis to determine if children with diabetes differ from children without a chronic illness in a variety of domains reflecting psychological well-being. METHOD: A meta-analysis was undertaken of 22 studies that compared children with diabetes to a comparison group. Outcomes included depression, anxiety, behavioral problems, and related constructs. RESULTS: Children with diabetes were more likely than comparison groups to experience a variety of psychological difficulties. However, these effects were small to medium in magnitude and were typically smaller among more recent studies and studies with well-matched comparison groups. CONCLUSIONS: This meta-analysis suggests that children with diabetes are at slightly elevated risk for psychological difficulties. Future work will need to help identify children at the highest risk, and to identify factors associated with resilience.

Parent and adolescent distribution of responsibility for diabetes self-care: links to health outcomes.

OBJECTIVE: To examine the relation of adolescent and parent responsibility distribution for diabetes self-care to psychological and physical health. METHODS: We interviewed children (mean age 12 years) annually for 3 years and asked parents to complete a questionnaire. Both reported how diabetes self-care was distributed in the family. Amount of responsibility held by the child only, the parent only, and shared between child and parent was calculated. Psychological distress, competence, and diabetes outcomes were assessed at each wave. RESULTS: In both cross-sectional and longitudinal (lagged) analyses, multilevel modeling showed that shared responsibility was consistently associated with better psychological health, good self-care behavior, and good metabolic control, whereas child and parent responsibility were not. In some cases, links of shared responsibility to health outcomes were stronger among older adolescents. CONCLUSIONS: These findings highlight the importance of shared responsibility for diabetes self-care through early to middle adolescence.

The role of friendship in the lives of male and female adolescents: does diabetes make a difference?

PURPOSE: We examined differences in the nature of friendship between adolescents with diabetes and healthy adolescents. We also examined whether friend support and negative relations with friends were related to health for both groups. METHOD: We interviewed 127 adolescents with diabetes and 129 healthy adolescents on two occasions, separated by one year. We measured aspects of friendship and psychological health among both groups as well as self-care behavior and metabolic control among adolescents with diabetes. We used logistic regression analysis to predict the presence of friends, repeated measures analysis of covariance to predict changes in friendship over time, and hierarchical multiple regression analysis to examine the relations of friendship to psychological health, self-care behavior, and metabolic control. RESULTS: Both groups of adolescents were equally likely to have a best friend and boyfriend/girlfriend, but healthy adolescents were more likely to have an other-gender friend. Adolescents with diabetes and healthy adolescents reported similar levels of friend support, but support increased over the year for healthy girls only. Boys with diabetes had the lowest levels of friend support. Negative relations with friends were inversely related to psychological health and predicted a decline in psychological health over time. Negative relations also predicted poor metabolic control and a deterioration of metabolic control over time. CONCLUSION: There are similarities and differences in the nature of friendship for adolescents with diabetes compared with healthy adolescents. Friendship serves a protective function for psychological health for both groups and has implications for physical health among those with diabetes.

A meta-analytic review of benefit finding and growth.

The authors conducted a meta-analysis to examine the relations of benefit finding to psychological and physical health as well as to a specific set of demographic, stressor, personality, and coping correlates. Results from 87 cross-sectional studies reported in 77 articles showed that benefit finding was related to less depression and more positive well-being but also more intrusive and avoidant thoughts about the stressor. Benefit finding was unrelated to anxiety, global distress, quality of life, and subjective reports of physical health. Moderator analyses showed that relations of benefit finding to outcomes were affected by the amount of time that had passed since stressor onset, the benefit finding measured used, and the racial composition of the sample.

Brief report: friendships of adolescents with and without diabetes.

BACKGROUND: Friendships of adolescents with chronic illness have been rarely studied. OBJECTIVE: To compare the friendships of boys and girls with diabetes with those between healthy adolescents. METHODS: One hundred and thirty-eight adolescents were interviewed at summer camps. Participants indicated their number of close friends and rated friendships for support and conflict. Participants described aspects of their same-sex and other-sex friendships that they liked and disliked. RESULTS: Adolescents with diabetes have friendships that are similar to those between healthy adolescents, with a few exceptions. CONCLUSIONS: Emotional support may be especially valued by girls with diabetes, whereas differences among friends may be less valued among adolescents with diabetes.