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Diabetes camp matters: Assessing families’ views of their diabetes camp experience: WEISSBERG-BENCHELL et al .
Abstract
Background:
Camp offers a safe and fun environment for learning new information about diabetes care and for trying new self-care skills. It is a place where children and teens are able to meet with others who also have diabetes and who share their experiences.
Materials and methods:
This study assessed self-reports before and after attending diabetes camp on diabetes-specific emotional distress, diabetes-specific quality of life, and self-care behaviors by surveying campers and their parents from over 42 diabetes-specific summer camps across the United States. Parents (N = 413), Teenagers (N = 154), and Children (N = 116) completed both pre- and post-camp surveys.
Results:
Parents reported higher levels of diabetes-specific emotional distress than their campers did. Both parents and children reported significant improvements in their own distress after camp. Teens reported improvements in distress but they were not statistically significant. Youth report higher levels of self-care skills than parents believe their children possess. Parents, Teens, and Children all reported significant improvements in the camper's self-care skills after camp. First time campers' and their parents' perspectives regarding self-care skills are consistent with veteran campers after attending camp. Self-reports post-camp reveals that campers and their parents see camp as a place where youth feel they are with others who really understand what it is like to live with diabetes. Respondents also report that camp is a place where youth are exposed to new technologies and where campers can try new self-care tasks.
... While literature reviews have indicated a general improvement in psychological variables after attending a diabetes camp (13)(14)(15), especially in short-term benefits (16), other studies have described no relevant variations in anxiety and psychological adaptation after diabetes camp (17,18). In the same way, in research investigating children's quality of life after the camp, some studies have found improvement in this dimension (10,19) while other studies have not (14,(20)(21)(22). ...
... Similarly, improvements in attitude toward illness, selfefficacy, competence in diabetes management, adherence, and self-care after the camp experience have been described (12,17,(22)(23)(24)(25), along with other evidence, all indicating mixed results (26). ...
... In particular, the majority of this research has focused on parents' satisfaction with camp experience (24,26), on what was changed in their child (in terms of patients' adherence, self-care skills, diabetes knowledge, and management) according to the parents' point of view (12,21,25), and on parents' reports of what their child needed to learn (23). However, despite the positive association between parents' well-being and children's metabolic control (35), little research has investigated changes in parents' diabetes treatment-related burden or in parents' feeling and stress around managing a chronic illness after their children attended the camp (10,22,36). No evidence has been provided on changes in parents' treatment satisfaction. ...
Objective: The aim of this study was to assess general psychosocial adjustment to diabetes and perceived disease management among patients with type 1 diabetes (T1D) and their parents before and after patients' participation in a diabetes summer camp.
Methods: In this follow-up study, 20 children and adolescents with T1D (eight boys; mean age = 11.01 ± 0.94 years; mean diabetes duration = 3.02 ± 2.27) attending a southern Italian diabetic center, along with their parents, were assessed prior to and 3 months after the youths participated in a 1 week camp-based intervention involving didactic and interactive child-centered education and recreational activities. Patients and their parents completed measures assessing patients' quality of life and strategies employed by patients to cope with pain. Patients also completed measures evaluating their diabetes psychosocial adjustment, diabetes self-efficacy management, and illness perception; also, their parents completed measures of caregivers' perceived diabetes burden and treatment satisfaction. Youths' glycated hemoglobin (HbA1c) and standardized body mass index (z-BMI) values were also assessed. Within-subjects repeated-measures analyses of variance evaluated pre- and post-camp changes.
Results: Camp attendance showed no beneficial effects on glycemic control, as indicated by HbA1c values both before (7.02%) and after (7.28%) camp being lower than 7.5%. HbA1c values were found to have increased after camp (pre-camp = 7.02%, post-camp = 7.28%; p = 0.010), but since they still fell within an acceptable range, they did not reveal clinically relevant changes in glycemic control. No substantial significant improvement in psychosocial measures was observed in children or parents (all p > 0.05). According to the parents' evaluation, social support-seeking as a patient pain-coping strategy was slightly increased ( p = 0.044) after attending the camp.
Conclusions: This study does not provide empirical evidence of benefits of participating in a diabetes camp for either patients or their parents. These findings suggest that healthcare providers rethink such camps as an experience for youths with T1D that actively involves parents and that includes both youth- and parent-focused psychological interventions.
... 10 Several studies have examined the effect of diabetes camp participation on psychological variables without a consensus. There is no agreement regarding anxiety 11 since, while Briery and Rabian 12 reported a significant decrease in anxiety levels from pre-camp to post-camp, Török et al. 13 found no significant differences in these levels, nor did García-Pérez et al. 14 Additionally, no improvement was found in QoL, 11,15,16 although there was improvement in the Self-perception subscale. 17 Improvement was seen, however, in distress, self-esteem, self-efficacy and attitudes toward the child's disease after diabetes camp. ...
... 17 Improvement was seen, however, in distress, self-esteem, self-efficacy and attitudes toward the child's disease after diabetes camp. 12,13,16 Although the ISPAD 3 reports that adolescents with diabetes have a higher incidence of depression, no studies have analyzed the emotional state of children who have participated in a diabetes camp. ...
Objetive
The aim of this study was to examine the quality of life, anxiety and affectivity in children and adolescents with type 1 diabetes (T1D) and in their parents after participating in a diabetes summer camp.
Method
A total of 20 children and adolescents with T1D, aged 8–14, and their parents participated. The study design was quasi-experimental longitudinal with an intra-subject factor with two measurements (pre/post), and an inter-group factor (child/parent).
Results
After attending camp, a significantly increased quality of life, demonstrated by the emotional well-being and self-esteem scores, was found in the children but not in the parents. Less negative affectivity and an improvement in positive affectivity was seen in the parents, but not in the children. Differences in anxiety were found in both the children and the parents.
Conclusions
This research presents empirical evidence of the benefits of participation in a diabetes camp in both children and their parents.
... 10 Several studies have examined the effect of diabetes camp participation on psychological variables without a consensus. There is no agreement regarding anxiety 11 since, while Briery and Rabian 12 reported a significant decrease in anxiety levels from pre-camp to post-camp, Török et al. 13 found no significant differences in these levels, nor did García-Pérez et al. 14 Additionally, no improvement was found in QoL, 11,15,16 although there was improvement in the Self-perception subscale. 17 Improvement was seen, however, in distress, self-esteem, self-efficacy and attitudes toward the child's disease after diabetes camp. ...
... 17 Improvement was seen, however, in distress, self-esteem, self-efficacy and attitudes toward the child's disease after diabetes camp. 12,13,16 Although the ISPAD 3 reports that adolescents with diabetes have a higher incidence of depression, no studies have analyzed the emotional state of children who have participated in a diabetes camp. ...
Objetive:
The aim of this study was to examine the quality of life, anxiety and affectivity in children and adolescents with type 1 diabetes (T1D) and in their parents after participating in a diabetes summer camp.
Method:
A total of 20 children and adolescents with T1D, aged 8-14, and their parents participated. The study design was quasi-experimental longitudinal with an intra-subject factor with two measurements (pre/post), and an inter-group factor (child/parent).
Results:
After attending camp, a significantly increased quality of life, demonstrated by the emotional well-being and self-esteem scores, was found in the children but not in the parents. Less negative affectivity and an improvement in positive affectivity was seen in the parents, but not in the children. Differences in anxiety were found in both the children and the parents.
Conclusions:
This research presents empirical evidence of the benefits of participation in a diabetes camp in both children and their parents.
... Participants were recruited from 42 diabetes camps, representing 106 camp sessions, throughout the United States, during the summers of 2014 and 2015 as part of a larger study (Weissberg-Benchell & Rychlik, 2017). All campers between 8 and 18 years old with a parent able to consent and complete the study questionnaires in English were eligible to participate. ...
... Additionally, measures of HbA1c and self-management skills were parent-reported, and are vulnerable to inaccuracies in memory and social desirability bias. While there are studies to support retrospective reporting of HbA1c (Hessler et al., 2016;Weissberg-Benchell, Rausch, Iturralde, Jedraszko, & Hood, 2016;Weissberg-Benchell & Rychlik, 2017), future research using the PAID-C and P-PAID-C should involve a medical chart review to obtain HbA1c levels. Additional measures of depression, nondiabetes specific stress, family conflict due to diabetes, and overall psychological functioning were not included in the present validity analyses and should be evaluated through future research based on prior studies suggesting relations between diabetes distress and these variables in other age groups (Shapiro et al., 2017;Weissberg-Benchell & Antisdel-Lomaglio, 2011;Weissberg-Benchell et al., 2014). ...
Objective:
Children with type 1 diabetes and their parents face daily self-care demands, leading to diabetes-specific emotional distress. A standardized measure of diabetes distress can guide clinical care and prevent negative outcomes.
Methods:
This study evaluated the psychometric properties of child- and parent-report measures of the Problem Areas in Diabetes Scale, adapted for children ages 8-12 (PAID-C) and their parents (P-PAID-C). Participants were from 42 diabetes camps in the United States. Children (N = 804; mean age = 10.3 ± 1.1) and parents (N = 968) completed measures of diabetes distress, diabetes-related strengths, and self-care skills. Half of the sample was used for exploratory factor analyses (EFA) with direct oblimin rotation and the other half for confirmatory factor analyses (CFAs).
Results:
For the PAID-C, EFA and CFAs supported an 11-item two-factor measure, Cronbach's α = .91, accounting for 54.6% of the variance. For the P-PAID-C, analyses resulted in a 16-item measure, Cronbach's α = .92, accounting for 51.9% of the variance. PAID-C and P-PAID-C scores were positively correlated with HbA1c (rchild = .08, p = .04; rparent = .18, p < .001), and negatively correlated with diabetes-related strengths (rchild = -.38, p < .001, rparent = -.29, p < .001) and parent report of child self-care skills (rparent = -.13, p < .001; rchild = -0.07, p = ns).
Conclusions:
Initial psychometrics suggest that the PAID-C and P-PAID-C reliably and validly capture diabetes-specific emotional distress for children and their parents. Associations with glycemic control, self-care, and diabetes strengths demonstrate criterion validity. Both measures have potential applications for routine, clinic-based assessments of diabetes distress and may guide clinical decision-making.
... ,89 Diabetes residential and day camps organized by local and national diabetes organizations provide an additional opportunity for learning and review of diabetes management skills in a safe and supportive environment. From a diabetes education standpoint, diabetes camps appear to have an initial impact and are appreciated by young people with diabetes and their caregivers, which is mediated through psychosocial benefits.[90][91][92] The organization and aims of diabetes camps have been described in detail in the ISPAD Guideline for the delivery of ambulatory care (ISPAD 2022 Consensus Guidelines Chapter 7 on The delivery of ambulatory diabetes care to children and adolescents with diabetes). ...
... Upon reflections about their experiences, participants began by talking about the lack of friendships and activity within the diabetes community prior to embarking on the trip, and how engaging with this experience helped build that social network in a meaningful way. This finding extends assertions that peer relationships during OAE programs may play a central role in improving psychosocial functioning for individuals living with T1D (Hill & Sibthorp, 2006;Santiprabhob et al., 2008;Weissberg-Benchell & Rychlik, 2017). ...
Type 1 diabetes (T1D) is an endocrine and metabolic disorder affecting approximately 1.4 million adults living in the United States. Psychosocial factors have been identified as key barriers to improvements in self-care among T1D adults, including emotional well-being, social support and self-efficacy, and personal motivation. It is posited that nonclinical approaches, such as peer-based outdoor adventure education programs, could assist T1D adults with their individual psychosocial needs. However, very little research exists to support this unique approach to care. The purpose of this study was to explore the meaning that adults living with T1D ascribe to participation in a wilderness backpacking trip. Eighteen participants with T1D completed a 5-day backpacking trip on the Chilkoot Trail in Alaska and British Columbia. Once on the trip, participants were invited to participate in two semi-structured interviews within 48 hours of the trip start and end date. Using a phenomenological approach, three themes were constructed: a) seeking and finding a diabetes community, b) revealing capabilities to yourself and the world, and c) enhancing diabetes management and self-care on the trail and in life. A common thread across the three constructed themes was the sense of belonging to the diabetes community, which was described by the participants as paramount to their positive overall trip experience. This finding extends assertions that peer relationships during OAE programs may play a central role in improving psychosocial functioning for individuals living with T1D. This provides evidence on the power of using outdoor recreation to positively impact the community of individuals with T1D.
... of life, [2][3][4] and haemoglobin A1c (HbA1c) levels. 5 However, few studies have examined whether glycaemic control at home prior to camp is different than that during camp. ...
Introduction
Few studies have evaluated glycaemic control using continuous glucose monitoring (CGM) in individuals before and after attendance at a diabetes camp or by comparing control groups at home to control groups at camp.
Methods
Youth (6–17 years) with T1D and receiving insulin therapy were enrolled at a week‐long diabetes camp. They participated in three clinic visits: at the start of a week at home, by initiating a Dexcom G6 CGM system; at the start of a week at camp, where the home week G6 was removed and a camp week G6 was inserted; and after camp, where the camp week G6 was removed. We administered Problem Areas in Diabetes (PAID) surveys at the second and third visits. Participants with <80% CGM data coverage or who did not complete all PAID surveys were excluded from analysis. We compared glycaemic control and PAID scores between the week at home and week at camp.
Results
Of 76 enrolled campers, 69 completed the study and 52 had results that qualified for analysis. The mean participant age was 12.5 ± 2.2 years. Camp was associated with significantly improved treatment satisfaction, time in desired glucose range and insulin sensitivity. Time in hyperglycaemia and basal insulin requirements decreased significantly.
Conclusions
Diabetes camp is associated with significant improvements in diabetes treatment satisfaction and glycaemic control compared to home care.
... 13,49 Likewise, the relatively recent concept of diabetes distress (an emotional state where a person living with diabetes experiences concerns about disease management, support, emotional burden, and access to care 54 ) was noted to be reduced after summer camp in two recent large US reports from the same research group. 48,55 The reviewed literature also reported improvements in psychosocial measures like attitude towards illness, depression, self-efficacy, and confidence in self-management, 29,12 while one study found an insulin dose reduction 11 and another a body mass index increase. 37 This should improve the reliability of conclusions, reduce betweenstudy heterogeneity and facilitate pooling of results. ...
Objective:
Diabetes summer camps provide children and adolescents with type 1 diabetes opportunities to learn about the disease and its management in a supportive environment to help improve glycaemic control, self-reliance and quality of life. The objective of this quantitative review was to assess the advantages of attending summer camps and study any adverse psychological effects.
Methods:
Studies with a pre/post study design in children and adolescents attending summer camp were systematically reviewed. Five bibliographic databases were searched and relevant data extracted. Random effects meta-analyses were used to combine the individual study results to derive pooled estimates and meta-regression was used to explore between-study heterogeneity.
Results:
Studies in the literature report short-term improvements in the glycaemic control, diabetes knowledge (DK), quality of life (QOL) anxiety, diabetes self-management and self-esteem. Thirty-three studies were identified, and those outcomes reported in five or more studies were included in meta-analyses. There were significant benefits with a pooled mean change for glycated haemoglobin (95%CI) of -0.59(-0.95,-0.23)% (-6.4(-10.4,-2.5)mmol/mol), and for standardised DK score of 1.99(1.28,2.70) but corresponding changes for QOL 0.17(-0.06,0.39) and for anxiety -0.32(-0.70,0.06) were not significant. However, all outcomes showed considerable between-study heterogeneity little of which was explained by study characteristics.
Conclusion:
The findings suggests short-term benefits of camp on metabolic control, DK, QOL and anxiety in T1D children and adolescents, although the latter two were not statistically significant. Further research is warranted with more methodological rigor and longer-term follow-up to determine if there are long-term benefits associated with camp attendance. This article is protected by copyright. All rights reserved.
... Data are from the Diabetes Camp Matters Study and the Supporting Teen Problem Solving (STePS) study. Methods and inclusion criteria for both studies are published elsewhere (Weissberg-Benchell, Rausch, Iturralde, Jedraszko, & Hood, 2016;Weissberg-Benchell & Rychlik, 2017). For the camp study, data were from youth aged 12 to 18 years, attending one of 42 camps across the United States, and their caregivers. ...
Objective:
This study adds to the literature on the psychometric properties of the Problem Areas in Diabetes-Teen (PAID-T) and Parent (P-PAID-T) Versions. It also aims to shorten the measures of diabetes-specific distress, determine construct validity, and establish cutoff scores.
Methods:
Data are from two independent studies (N = 1,265). Adolescent-caregiver dyads completed measures of emotional distress, diabetes strengths, hemoglobin A1c, blood glucose checks, and average blood glucose. Exploratory and confirmatory factor analyses assessed factor structures for each measure. Correlational analyses provided support for concurrent validity. Receiver-operating characteristic curves identified cutoff scores based on clinically meaningful groups identified with latent profile analysis.
Results:
Analyses supported a 14-item PAID-T and a 15-item P-PAID-T, with preliminary cutoff scores ≥44 and ≥54, respectively. Measures were associated with emotional and health outcomes as hypothesized.
Conclusions:
The PAID-T and P-PAID-T are valid, reliable, and useful measures of diabetes-specific distress for teenagers with type 1 diabetes and parents of teenagers.
Introduction:
Current literature on pharmacy students' and residents' experience attending camps for children with diabetes focuses on the experience at an individual campsite. The objective of this study was to examine the demographics and gains in understanding that pharmacy learners achieve when volunteering as medical staff at camps for children with type 1 diabetes (T1D).
Methods:
National listservs were used to identify pharmacists who precept pharmacy students and residents at diabetes camps. These self-identified pharmacists shared pre- and post-camp electronic surveys with their respective pharmacy learners. Statistical analysis was completed using SPSS Version 25 (IBM, Corp.).
Results:
Eighty-six pharmacy learners completed the pre-camp survey and 69 completed the post-camp survey. Most were Caucasian, in their fourth professional year, and participated in residential camps that lasted six and one-half days on average. Learners consistently engaged in patient care activities including: carbohydrate counting (87%), bolus insulin dose calculations (86%), treatment of hypo/hyperglycemic episodes (86%), blood glucose testing (83%), blood sugar trend evaluation (78%), basal insulin dosing calculations (74%), and insulin pump site changes (72%). Learners demonstrated statistically significant gains in every index measured with the exception of glucometer use. Eighty-seven percent indicated they learned how to appropriately manage T1D, 37% gained empathy for those living with T1D, and 13% learned how to work in a medical team.
Conclusions:
Pharmacy learners who volunteered at diabetes camps experienced large gains in their understanding of concepts and devices, comfort with performing patient care tasks, and compassion for children and their families living with T1D.
Background and Objective
Among adolescents with type 1 diabetes, research has found that their perception of their diabetes management is an important predictor of actual diabetes management. There is a need for measures that assess adolescents’ perception of their ability to independently complete daily diabetes self-care tasks. The current study examined the psychometric properties of the Diabetes Skills Checklist Teen-Report (DSC-T) and DSC Parent of Teen-Report (DSC-PT), which assess perceived independence in diabetes self-care skills.
Methods
Data were from 1450 adolescents aged 12 to 18 years and their parents who participated in the Diabetes Camp Matters Study. Families completed the DSC as well as other questionnaires online assessing demographic and diabetes-related information, diabetes strengths, and diabetes-specific emotional distress.
Results
Exploratory factor analysis revealed a 14-item DSC-T and 12-item DSC-PT, both with excellent internal consistency and concurrent validity. Both the DSC-T and DSC-PT were found to be positively correlated with diabetes strengths and negatively correlated with HbA1c, and the DSC-PT was significantly correlated with parent-reported diabetes distress. Adolescents who used insulin pumps and continuous glucose monitoring reported higher perceived independence in diabetes self-care skills compared to adolescents who used insulin pens/syringes or a blood glucose meters. No differences were found based on demographic characteristics.
Conclusions
The DSC-T and DSC-PT have strong potential to be used during diabetes clinic visits to spark discussion regarding adolescents’ self-care, which would allow for a more successful transfer of diabetes care from parent to adolescent, and eventually, the transition from pediatric to adult healthcare.
This article is protected by copyright. All rights reserved.
Background:
The transition from pediatric to adult care for youth with childhood-onset systemic lupus erythematous (cSLE) is a vulnerable period. Adverse outcomes during this transition include gaps in care, unscheduled healthcare utilization, loss of insurance, and high disease activity. However, the clinical care teams' perspective on the psychosocial factors associated with transition outcomes in this population remain poorly understood.
Methods:
We conducted in-depth interviews with clinical care team members who interact with cSLE patients during transfer from pediatric to adult rheumatology. A semi-structured interview guide was used to prompt participants' perspectives about the psychosocial factors associated with the transition process for cSLE patients. Audio recordings were transcribed and analyzed using the constant comparative method. We stopped conducting interviews once thematic saturation was achieved.
Results:
Thirteen in-depth interviews were conducted. Participants included pediatric rheumatologists (n=4), adult rheumatologists (n=4) from both academic and private practice settings, nurses (n=2), a nurse practitioner, a social worker, and a psychologist. We identified several themes deemed by clinical care teams as important during the transition, including the impact of the family, patient resilience and coping mechanisms, the role of mental health and emotional support, and the need for education, peer support, and social connectedness.
Conclusions:
We identified several psychosocial themes that clinical team members believe impact the transition of patients with cSLE into adult care. The role of parental modeling, youth resilience, mental health and emotional care, improved cSLE education, and structured peer support and social connectedness are highlighted, which may be amenable to interventions.
Recreational camps for children play an important role in coping with the illness of a family member. This paper aims to describe the experience of a young-carer summer camp in Austria from the perspective of the attending children who care for a parent with severe physical illness as well as their diagnosed and non-diagnosed parents who remained at home. Nineteen qualitative interviews with children and their parents were conducted and analyzed according to qualitative summarizing content analysis procedure. The findings show a familial decision-making process and the ambivalent expectations and feelings of the children prior to the camp. The camp itself is a place where children feel looked after and where they can enjoy adventure activities. It is also a place where they are among themselves and can make friends and talk about their feelings in a secure and private environment. During the camp, the remaining parents try to spend most of their time focusing on themselves and their partnership. The camp also gives the children a glimpse of another way of living with new freedoms that cannot be maintained when they come home. These findings indicate that camps can make an important contribution to addressing young carers’ needs but should also initiate a debate on more sustainable relief measures for children with care responsibilities.
Background:
Children attending diabetes camp are more active, increasing the risk of hypoglycemia. Decreasing initial insulin doses may reduce this risk.
Objectives:
To describe glycemic control in children with type 1 diabetes (T1DM) attending diabetes camp, and analyze the impact of decreasing basal insulin by 10%. To compare glycemic control between campers receiving multiple daily injections (MDI) and continuous subcutaneous insulin infusion (CSII), and examine basal insulin changes during the first week.
Methods:
We analyzed 849 camp sessions (599 children, 5-19 years old) from Camp Sweeney's 2016/2017 summers. Campers were separated into groups by year and insulin route (MDI_2016, MDI_2017, CSII_2016, CSII_2017). The MDI_2016 group had initial basal insulin decreased 10%, while CSII_2016, MDI_2017, and CSII_2017 did not. Time spent in blood glucose ranges and area under the curve (AUC) were compared by year and insulin route using ANOVA. We also performed repeated measures ANOVA using campers who attended both years.
Results:
No significant differences in time spent in any glucose range could be attributed to the initial 10% basal decrease, including on paired analysis. MDI_2017 had more decreases to basal insulin than the other groups. CSII campers had higher AUC and more hyperglycemia than MDI campers.
Conclusions:
Campers on MDI may benefit from decreasing basal insulin, either at the beginning of camp or during the first week. Future research is needed to optimize glycemic control in the camp setting. This article is protected by copyright. All rights reserved.
Purpose:
Camp V.I·P (Victory, Independence, Possibilities) was established by the Spina Bifida Association of Alabama in 2012. The goal is to provide children with spina bifida (SB) and their families a traditional-style summer camp focusing on self-empowerment and fostering independence in medical self-management.
Design and methods:
Part 1 of this study describes Camp V.I·P. structure. Part 2 describes an online survey to caregivers of campers gauging camp effectiveness and value and evaluating perceptions of confidence/independence and family connections. Camper characteristics were compared to the overall SB clinic population.
Results:
63 children with SB, 81 siblings, and over 100 caregivers have attended camp. Campers are similar to the overall clinic population in race, gender, and ambulation status. At camp, there are significantly more children with myelomeningocele (versus other spinal dysraphism) and lumbar functional level (versus thoracic). Survey results show that confidence grew in 93% of campers, and 86% gained greater independence. Parents stated that they created lifelong friendships. The majority of caregivers (91%) indicated "certainty" that they would attend camp again.
Conclusion:
Camp V.I·P is a family-centered environment that emphasizes respite, nurture, and the continuum between family and clinic. Our research shows that camp can be a useful tool to aid in independence, confidence, and social adaption.
Practice implications:
Camp has become an integral part of our comprehensive care of children with SB and has been shown to reinforce what is taught through the clinic by creating trust between the care team and campers.
Objective
Prior studies suggest diabetes camps improve psychosocial well‐being in youth with type 1 diabetes but these studies suffer from variable levels of rigor. The current study assessed associations between camp participation and diabetes distress, perceived independence in diabetes self‐care, and diabetes strengths in a large sample of children, adolescents, and their parents across 42 camps in the United States. Analyses compared viewpoints of study participants, identified moderators of change, and assessed perceived benefits of camp participation.
Research Design and Methods
There were 2488 youth and 2563 parents consented for participation in the online survey. Participants reported diabetes distress and perceived independence in youth care, their new experiences and best parts of camp, and changes in behavior following camp. T‐tests, regressions, Cohen’s d, and relative frequencies were used as appropriate to assess baseline differences between reporters, pre‐post outcome differences, and moderators of change.
Results
Parents as compared to youth reported higher pre‐camp distress and lower perception of youth independence in self‐care. Youth experienced a statistically significant decrease in distress and increase in independence in self‐care. Diabetes strengths did not change. Higher A1c prior to camp was associated with higher levels of distress across camp participation. Campers and their parents endorsed a high frequency of positive firsts, bests, and benefits of camp.
Conclusions
Data from a large sample youth with type 1 diabetes across multiple camps demonstrated broad‐based psychosocial benefits of camp participation.
This article is protected by copyright. All rights reserved.
Camps for youth with type 1 diabetes (T1D) have grown in size and scope since they first emerged in the 1920s. Anecdotal evidence suggests that attending camp with other youth with T1D is beneficial, largely attributed to sharing fun, active experiences and removing the isolation of living with diabetes. However, few studies have evaluated the psychosocial and medical impacts of T1D camp attendance during and after camp sessions. In addition, T1D camps have been a setting for numerous studies on a variety of T1D-related research questions not related to camp itself, such as testing novel diabetes management technologies in an active, non-laboratory setting. This paper reviews the evidence of psychosocial and medical outcomes associated with T1D camp attendance across the globe, provides an overview of other research conducted at camp, and offers recommendations for future research conducted at T1D camp.
Objective A meta-analysis examined the association between camp attendance and changes in self-perceptions in children with chronic
health conditions. Methods Studies using quantitative methods to assess changes in self-perceptions while attending camps designed for children with
chronic health conditions were included in analyses. A random-effects model was used, and Cohen’s d was used to calculate effect sizes at both post-camp and follow-up. Some potential moderators of effects were examined (i.e.,
type of measure of self-perceptions, children’s chronic health condition, camp components). Results 31 studies were included in the analyses. Children experienced small, but statistically significant, improvements in self-perceptions
at both post-camp (d = .25, 95% CI [.16–.34]) and extended follow-up (d = .15, 95% CI [.05–.26]). This relationship was moderated by type of measure of self-perceptions and child health condition. Conclusions Camp attendance is associated with small improvements in self-perceptions for children with some chronic health conditions.
Aim:
It is recommended to assess health-related quality of life (HRQoL) in teenagers with diabetes as part of their ongoing medical care. Here, we describe the development and psychometric evaluation of the Monitoring Individual Needs in Diabetes Youth Questionnaire (MY-Q), a multi-dimensional self-report HRQoL questionnaire designed for use in pediatric diabetes care.
Design and methods:
In expert meetings, characteristics and domains of interest were defined. Existing questionnaires were reviewed, topics selected, and new items added, resulting in the 36-item MY-Q. To test face validity, we interviewed 22 teenagers. In addition, 84 teenagers with type 1 diabetes (age 10-18 yr) completed the MY-Q and Pediatric Quality of Life Inventory (PedsQL) generic and diabetes-modules to examine psychometric properties. Hemoglobin A1c (HbA1c) values were obtained by chart audit.
Results:
The MY-Q consists of seven subscales (social impact, parents, diabetes control perceptions, responsibility, worries, treatment satisfaction, and body image and eating behavior) as well as general HRQoL and emotional well-being. Cronbach's alpha for the total scale was 0.80. Strong correlations between MY-Q total and PedsQL generic and diabetes-module scores (r = 0.58 and r = 0.71, p < 0.001) confirmed concurrent validity. Higher HbA1c was associated with lower diabetes control perceptions (r = -0.35, p = 0.001), worries (r = -0.24, p = 0.029), and body image and eating behavior (r = -0.26, p = 0.019) scores. Younger age was associated with higher diabetes control perceptions (r = -0.26, p = 0.020) and body image and eating behavior (r = -0.23, p = .038), and lower responsibility (r = 0.25, p = 0.027) scores.
Conclusion:
The MY-Q is the first HRQoL questionnaire designed for use in clinical care. It has acceptable measurement properties and seems suitable for implementation in routine care of teenagers with diabetes.
To examine the relationship between a 1-week pediatric summer camping program and children's attitudes toward their physical disabilities and/or medical conditions and levels of trait anxiety.
The Child Attitude Toward Illness Scale (CATIS; Austin & Huberty, 1993) and the trait scale of the State-Trait Anxiety Inventory for Children (STAIC; Spielberger, 1973) were given to 90 children as pretests to determine baseline attitudes toward their illnesses and their overall levels of trait anxiety. At the end of the 1-week camp sessions, the CATIS and STAIC A-Trait Form were completed once more as posttest measures.
Pretest and posttest scores for all camp groups were compared to assess changes in the children's attitudes toward their illnesses and levels of trait anxiety. Overall, participants had better attitudes toward their illnesses and lower levels of trait anxiety at the end of camp.
Participation in a pediatric summer camp was related to changes in psychosocial functioning, with changes evident across diagnostic groups and gender. The consistency of the findings underscores the need for further investigation.
The aim of this study was to evaluate the effectiveness of diabetes camp on glycemic control, knowledge, and psychosocial benefits among patients with type 1 diabetes (T1D). Glycemic control among patients with infrequent and frequent self-monitoring of blood glucose (SMBG) was also compared.
During a 5-day camp, 60 patients were taught diabetes self-management education (DSME). After camp, patients were divided into two groups based on frequency of SMBG (<3 versus 3-4 times/day) and were followed up until 6-month post-camp. Patients' HbA1c levels and knowledge were assessed at baseline, 3- and 6-month post-camp. Patients' impressions towards camp were assessed.
In both SMBG groups, HbA1c levels decreased significantly at 3-month post-camp but did not sustain at 6-month monitoring. The patients with frequent SMBG had a lower mean HbA1c level. A significant improvement in knowledge was noted and sustained up to 6-month post-camp. The patients found diabetes camp of benefit and felt they could better cope with diabetes.
Although the effect of the diabetes camp on glycemic control was short-lived, an improvement in knowledge and a better attitude towards having diabetes were seen among participants.
The psychosocial benefits and knowledge gained by patients attending diabetes camp underline the importance of including a camp in a diabetes management plan. To improve patients' long-term glycemic control, a continuous education is required.
Objective. This study provides information about children's learning and goal attainment related to change in their self-management skills during a diabetes camp.
Design and methods. One hundred and thirty-one children completed an evaluation for the first year (year 1), and 68 children completed an evaluation for the second year (year 2). All of the children had type 1 diabetes. During both years, parents provided information about goals for their child before camp started. Children's learning about diabetes self-management, as well as their satisfaction with camp, was assessed at the end of the camp session. In the evaluation for year 2, a goal-setting intervention was also developed, and its effectiveness was assessed through both physicians' and children's reports.
Results. Children learned new information during camp about recognizing and managing the signs of hypo- and hyperglycemia and about counting carbohydrates and rotating insulin pump sites. Children were better able to recall their self-management goals in year 2. In terms of benefiting from camp, boys reported learning more than girls about diabetes management, whereas girls were more likely than boys to report that greater opportunities to express feelings were of value.
Conclusions. Goal-setting was successful in improving children's recall of their self-management goals. Children benefited from the supportive and educational camp atmosphere. Future research should assess the benefits of camp across multiple camp settings and determine whether educational benefits have long-term effects on children's goal-setting and knowledge and whether these benefits lead to psychosocial improvements.
To describe the changes in insulin therapy regimens of children and adolescents with type 1 diabetes over 10 yr and their correlation with hemoglobin A1c (HbA1c). Research design and methods: The study included 7206 children and adolescents (age 12.8 ± 2.7 yr, more than 1 yr of diabetes duration) admitted in summer camps between 1998 and 2007 (707-896/yr). Based on injection times (breakfast, lunch, afternoon, dinner, bedtime) and insulin types (short, long and premixed; human or analog), 786 different therapeutic combinations were classified in six main types of regimens. The distribution of the different regimens and their correlation with HbA1c were evaluated as a function of year and age.
Over 10 yr, basal bolus increased from 13 to 52% and the pump from <1 to 13%, regimens with two to three injections per day decreased from 50 to 25%, those with only premixed insulins from 33 to 7%, and diverse regimens from 9 to 1%. HbA1c was significantly higher with premixed insulin only, but there were no differences between the other regimens throughout the follow-up. Mean yearly HbA1c (8.21-8.45%) did not show any significant decrease, but the percentage of patients with HbA1c > 9 and 10% decreased significantly, in those treated with two to three injections and the pump, not with basal bolus or premixed only regimens.
A major trend in intensifying insulin treatment in children and adolescents with type 1 diabetes was accompanied by modest improvements in HbA1c. No insulin regimen has shown any better results, except over premixed insulins.
Weissberg-Benchell J, Antisdel-Lomaglio J. Diabetes-specific emotional distress among adolescents: feasibility, reliability, and validity of the problem areas in diabetes-teen version.
To evaluate associations among parent-child behaviors and generic and diabetes-specific health-related quality of life (HRQOL) in a multi-site sample of youth with type 1 diabetes.
One hundred and twenty-one youth and their primary caregivers completed measures of parent-child behaviors, child HRQOL, and participated in an observed family interaction task.
Diabetes-specific parent-child variables were associated significantly with both generic and diabetes-specific HRQOL above and beyond the contributions of demographic and generic parent-child variables, accounting for between 13% and 31% of the variance in HRQOL. Diabetes-specific family conflict and negative diabetes-specific family communication were associated with lower HRQOL. Collaborative parent involvement in diabetes care was associated with higher levels of HRQOL.
Interventions that target diabetes-specific family interactions will be beneficial to the quality of life of children with type 1 diabetes.
Diabetes camp has become a common part of medical practice worldwide. Although patients' knowledge and self-management of diabetes may improve after camp, improved glycated hemoglobin A1c (HbA1c) levels have not been consistently demonstrated.
We performed a retrospective study of medical records at the Children's Medical Center Dallas Endocrinology Center for adolescents with type 1 diabetes aged 12-18 yr. We compared patients who did (n = 77) or did not (n = 106) attend Camp Sweeney, a regional 20-d diabetes camp. Some patients (n = 82) and their parents also completed measures of adherence, depression, and quality of life.
HbA1c decreased over time in patients who attended diabetes camp {mean [+/-standard deviation (SD)] at baseline, (T1) = 8.6% (+/-1.8%) and at follow-up, (T2) = 8.3% (+/-1.6%)}, whereas it increased in those who did not attend [mean (+/-SD) at T1 = 8.4% (+/-2.1%) and at T2 = 8.9% (+/-2.3%)] (p < 0.005). Seven months after camp (T3), there were still significant differences in HbA1c between the camp and control groups (p = 0.04), with the difference because of persistent improvement for girls but not for boys. Patients' adherence (p < 0.05) and adjustment (p < 0.05) improved by parental report in those who attended camp; parents of patients who did not attend did not report the change.
Attending Camp Sweeney is associated with improved glycemic control and parent-reported adherence and adjustment in adolescents with type 1 diabetes. Additional studies are needed to determine whether these findings can be generalized to other diabetes camps.
The delivery of ambulatory diabetes care to children and adolescents with diabetes
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Psychometric properties of the child and parent problem areas in diabetes measures. Poster presented at: the 76th Annual Scientific Sessions of the American Diabetes Association. New Orleans, Louisiana.
- M. Evans
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Validation of a diabetes self-care measure: associations with psychosocial and metabolic outcomes. Poster presented at: the Society for Pediatric Psychology Annual Conference, Atlanta, Georgia.
- Evans M
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Psychometric properties of the parent version of the problem areas in diabetes-teens. Poster presented at: the 74th Annual Scientific Sessions of the American Diabetes Association. San Francisco, California.
- J. Weissberg-Benchell
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