In the JournalsPerspective

Diabetes camp confers psychosocial benefits for children, caregivers

Children and adolescents with type 1 diabetes and their caregivers reported a decrease in diabetes-specific emotional distress and an increase in perceived independence in diabetes self-care skills after attendance at a diabetes camp in the United States, according to findings published in Pediatric Diabetes.

Jill Weissberg-Benchell

“Our study suggests that attending camp offers emotional and behavioral benefits for campers with type 1 diabetes and their parents,” Jill Weissberg-Benchell, PhD, CDE, professor of psychiatry and behavioral medicine at the Northwestern University Feinberg School of Medicine, told Endocrine Today. “Camp offers a place where youth can feel supported, connected and positive about living with diabetes.”

Weissberg-Benchell and colleagues analyzed data from 1,978 parents, 1,216 adolescents (mean age, 14 years) and 762 children (mean age, 10 years) recruited from 44 diabetes camps throughout the U.S. Participants completed pre- and post-camp surveys assessing diabetes management and distress. Questionnaires included the 26-item Problem Areas in Diabetes survey (with versions for children and teens), the 23-item Self-Care Skills Checklist to assess perceived independence in self-care skills, and the 12-item Diabetes Strengths and Resilience Measure to assess adaptive behaviors and attitudes about diabetes. Researchers also analyzed parent-reported HbA1c to assess glycemic control. Camp attendees also completed measures assessing the best parts of camp, first experiences occurring at camp and self-care behaviors that have changed since camp.

Within the cohort, 73.8% of attendees reported using an insulin pump, and 13.6% reported using a continuous glucose monitor.

The researchers observed a decrease in diabetes-related distress and an increase in perceived independence in diabetes self-care skills in parents and camp attendees (P .001). However, there were no observed changes in diabetes-related strengths for camp attendees.

“Contrary to our hypothesis, youth did not report changes in perceived diabetes-specific strengths, even though they reported improvements in distress and self-care skills,” the researchers wrote. “It may be that feelings (emotional distress) and behaviors (diabetes self-care) are more sensitive to change after 1 week at camp than perceptions regarding strengths.”

Changes in parent-reported distress were associated with changes in adolescent-reported distress (P < .001) and child-reported distress (P < .001), indicating similar trends in distress between campers and parents. Additionally, a change in parent perception of camper independence in self-care skills was associated with a change in self-care skills reported by adolescents (P < .001) and children (P < .001).

The researchers noted that most camp attendees reported similar first-time experiences.

“All respondents indicated that one key camp ‘first’ was making a friend with diabetes,” the researchers wrote. “Other first-time experiences included seeing a CGM and being away from home. Everyone agreed that the best thing about camp was being with people who are like the campers and having fun.”

After returning from camp, campers and parents reported feeling more confident in care for diabetes and in taking more initiative in caring for diabetes.

The researchers noted that adolescents with the highest HbA1c levels before camp demonstrated increased diabetes distress after camp, in contrast to peers with lower HbA1c levels who demonstrated a decrease in diabetes distress.

“While the lack of a comparison group renders conclusions a challenge, it is possible that adolescents with higher [HbA1c] compared themselves less favorably to their peers, which increased their distress,” the researchers wrote.

Data were not collected regarding camp programming or other camp-specific variables, such as how blood glucose was managed between camp attendees and staffers, they wrote.

“Future studies need to assess the impact of camp from a more racially and socioeconomically diverse sample, and barriers to attending camp need to be addressed,” Weissberg-Benchell said. – by Regina Schaffer

For more information:

Jill Weissberg-Benchell, PhD, CDE, can be reached at Northwestern University Feinberg School of Medicine, 225 E. Chicago Ave., Box 10, Chicago, IL 60611; email: jwbenchell@luriechildrens.org.

Disclosures: The Leona M. and Harry B. Helmsley Charitable Trust funded this study. The authors report no relevant financial disclosures.

Children and adolescents with type 1 diabetes and their caregivers reported a decrease in diabetes-specific emotional distress and an increase in perceived independence in diabetes self-care skills after attendance at a diabetes camp in the United States, according to findings published in Pediatric Diabetes.

Jill Weissberg-Benchell

“Our study suggests that attending camp offers emotional and behavioral benefits for campers with type 1 diabetes and their parents,” Jill Weissberg-Benchell, PhD, CDE, professor of psychiatry and behavioral medicine at the Northwestern University Feinberg School of Medicine, told Endocrine Today. “Camp offers a place where youth can feel supported, connected and positive about living with diabetes.”

Weissberg-Benchell and colleagues analyzed data from 1,978 parents, 1,216 adolescents (mean age, 14 years) and 762 children (mean age, 10 years) recruited from 44 diabetes camps throughout the U.S. Participants completed pre- and post-camp surveys assessing diabetes management and distress. Questionnaires included the 26-item Problem Areas in Diabetes survey (with versions for children and teens), the 23-item Self-Care Skills Checklist to assess perceived independence in self-care skills, and the 12-item Diabetes Strengths and Resilience Measure to assess adaptive behaviors and attitudes about diabetes. Researchers also analyzed parent-reported HbA1c to assess glycemic control. Camp attendees also completed measures assessing the best parts of camp, first experiences occurring at camp and self-care behaviors that have changed since camp.

Within the cohort, 73.8% of attendees reported using an insulin pump, and 13.6% reported using a continuous glucose monitor.

The researchers observed a decrease in diabetes-related distress and an increase in perceived independence in diabetes self-care skills in parents and camp attendees (P .001). However, there were no observed changes in diabetes-related strengths for camp attendees.

“Contrary to our hypothesis, youth did not report changes in perceived diabetes-specific strengths, even though they reported improvements in distress and self-care skills,” the researchers wrote. “It may be that feelings (emotional distress) and behaviors (diabetes self-care) are more sensitive to change after 1 week at camp than perceptions regarding strengths.”

Changes in parent-reported distress were associated with changes in adolescent-reported distress (P < .001) and child-reported distress (P < .001), indicating similar trends in distress between campers and parents. Additionally, a change in parent perception of camper independence in self-care skills was associated with a change in self-care skills reported by adolescents (P < .001) and children (P < .001).

The researchers noted that most camp attendees reported similar first-time experiences.

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“All respondents indicated that one key camp ‘first’ was making a friend with diabetes,” the researchers wrote. “Other first-time experiences included seeing a CGM and being away from home. Everyone agreed that the best thing about camp was being with people who are like the campers and having fun.”

After returning from camp, campers and parents reported feeling more confident in care for diabetes and in taking more initiative in caring for diabetes.

The researchers noted that adolescents with the highest HbA1c levels before camp demonstrated increased diabetes distress after camp, in contrast to peers with lower HbA1c levels who demonstrated a decrease in diabetes distress.

“While the lack of a comparison group renders conclusions a challenge, it is possible that adolescents with higher [HbA1c] compared themselves less favorably to their peers, which increased their distress,” the researchers wrote.

Data were not collected regarding camp programming or other camp-specific variables, such as how blood glucose was managed between camp attendees and staffers, they wrote.

“Future studies need to assess the impact of camp from a more racially and socioeconomically diverse sample, and barriers to attending camp need to be addressed,” Weissberg-Benchell said. – by Regina Schaffer

For more information:

Jill Weissberg-Benchell, PhD, CDE, can be reached at Northwestern University Feinberg School of Medicine, 225 E. Chicago Ave., Box 10, Chicago, IL 60611; email: jwbenchell@luriechildrens.org.

Disclosures: The Leona M. and Harry B. Helmsley Charitable Trust funded this study. The authors report no relevant financial disclosures.

    Perspective
    Carla Cox

    Carla Cox

    Intuitively, we have all known that diabetes camps make a big difference for children, particularly when it comes to meeting other children with the disease. This research supports a lot of the things we believed with respect to psychosocial outcomes. Unfortunately, we don’t see a big change with respect to clinical outcomes; however, from a psychological perspective, it is wonderful to have this very well-done study to back up what we’ve observed anecdotally.

    It is difficult to measure changes in outcomes just 1 week out of camp. What we do know from research is that the impact of diabetes camp lasts about 3 months. It would be great to conduct a “mini camp” or even a family camp, perhaps every 3 months, and follow up with this study to see if more frequent contact in a camping-like situation would not only have a positive impact on their psychological wellbeing, but on clinical outcomes as well. There should never be a financial barrier for attending a diabetes camp, and an American Diabetes Association camp is not going to turn away a child with diabetes who cannot afford to attend. The bigger issue is children who are less advantaged who either do not know about the availability of camps, or do not have the ability to go through the application process and actually get to camp. That is something we need to work on, so all children can enjoy the positive psychological outcomes that have been recognized.

    • Carla Cox, PhD, RD, CDE, CPT, FAADE
    • Certified Diabetes Educator and Insulin Pump Trainer
      Mountain Vista Medicine and Providence Medical Group
      Kamas, Utah

    Disclosures: Cox reports no relevant financial disclosures.