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Children with diabetes: perceptions of supports for self-management at school.

Diabetes is a common chronic illness for children, with a prevalence rate of about 1 in every 400 to 500 children. More than 125,000 youth under age 19 have diabetes, and about 13,000 new cases are diagnosed each year. (1-3) School staff may lack knowledge about how to assist children with diabetes. (4,5) Improved management of diabetes in childhood can improve academic performance and reduce physical complications related to diabetes as children grow older. (6-8)

Enhancing understanding of how to mobilize support for children with type 1 diabetes in the multiple contexts in which these children live represents an important area for research. (9) Most of the research has focused on peer and family support. (10-12) The American Diabetes Association has developed guidelines for diabetes management at school. (4) However, more research about children's perceptions of supports for diabetes management at school will educate school staff and improve learning environments for youth. (6,13) This research examined children's and adolescents' perceptions of supports for diabetes management in the school setting.

A literature search revealed no studies examining children's perceptions about managing their diabetes at school. However, one article in the Diabetes Forecast provided information on parental perceptions of managing diabetes at school. (14) Surveys from 263 parents of children with diabetes revealed that about two-thirds perceived management in school as an area of serious concern. (14) Parents mentioned that some school personnel need to become more knowledgeable about caring for their child's diabetes.

In addition to increased knowledge about diabetes, other procedures may facilitate diabetes management. For example, school staff may need to improve their ability to recognize and assist children during episodes of hypoglycemia, which children may call "feeling low." These episodes can cause significant physical and psychological distress for youth. (15) Allowing children to use test kits, and to take breaks to eat or drink when they are "feeling low," are other key ingredients for successful diabetes management. Ensuring that children do not feel singled out, and being flexible so children can self-manage their treatment, also may facilitate adherence to their medical regimen at school. (16) Due to funding shortages, some schools may not have a nurse present each weekday. If a child with diabetes experiences a hypoglycemic episode and does not receive proper care immediately, serious medical complications can result. Teachers and peers must have some knowledge of diabetes to help children manage the beginning stages of "lows" and "highs" (hyperglycemia).

Qualitative methods may be a good research method for providing knowledge about younger children's experience of their illness. (17,18) Ronen and colleagues (19) used qualitative methods with elementary school children to examine their perceptions of epilepsy and supports for managing their illness. Focus groups and interviews, combined with "child-friendly" approaches incorporating a "child life approach" using games and prizes, may provide an empowering environment for children to share their views. (17) A mixed-methods approach, combining qualitative and quantitative techniques, was used for this study. Combining qualitative and quantitative techniques is an advantageous method when seeking to learn about children's perceptions of sensitive topics, such as attitudes toward a chronic illness. (17,18,20) Kistner and colleagues (21) used qualitative and quantitative techniques to evaluate information from interviews designed to examine children's perceptions of AIDS. Quantitative techniques were used to verify qualitative findings, using the triangulation method (17) to examine findings from groups, interviews, and surveys completed with children and young adolescents attending summer camps sponsored by the American Diabetes Association. (22,23)

Most qualitative research on diabetes management for youth has focused on adolescents' perceptions of parental and peer support. (11,12,19,24-26) Adolescence is a difficult time for children, in terms of adhering to diabetes regimens. (12) Kovacs and colleagues (27) followed a sample of children ages 8 to 13 with diabetes until late adolescence. As the children became older, they viewed diabetes management as more difficult. Understanding ways to facilitate children's management of diabetes at younger ages may improve their ability to manage the illness during later adolescence. This study advances research by using mixed methods, including groups, interviews, and surveys, to assess children's and young adolescents' perceptions of supportive behavior by nurses, teachers, and friends that allow them to improve their diabetes management at school. Questions addressed two key areas of support: monitoring blood glucose levels and following meal plans at school.

METHODS

Participants

One hundred five children, including 60 boys and 45 girls, participated in the interviews and groups. Twenty-one attended a day camp for younger children aged 5 to 10 years, and 84 attended the camp for older children aged 9 to 14 years. Six children were African American and the others were Caucasian. All children had type 1 diabetes. Mean age was 10 years, 11 months (SD = 2 years, 2 months) and ages ranged between 6 years and 14 years and 6 months. Ninety percent of the children had siblings.

Seventy-eight parents, across both camps, completed surveys to provide information about their child's diabetes. Parents were recruited when they brought their child to camp, and information from parents was obtained for 72% of the children in the sample. Some parents decided not to participate because they were either watching their other children or speaking with the nurse about their child's medical care and diet during camp the day that data were collected. Parents' ages were between 28 and 56 years (M = 38 years, 3 months, SD = 6 years, 8 months). Sixty-two percent were married.

Parental consent and child assent were required for participation. Parents of younger children were recruited when they brought their child to camp in the mornings. Parents of older children were recruited on the first day of camp when they enrolled their child in the week-long overnight camp. In accordance with procedures for the American Diabetes Association (ADA), each parent received a copy of the consent form, study procedures, and measures.

The first, second, and third authors ran the groups and collected the data. The first author is a child psychologist, the second author is a graduate student in a psychology program, and the third author had just graduated from college and was enrolled in medical school (she had diabetes as a child and had attended the camps). The fourth author was the medical director for the camp and served as an advisor for all project activities.

Description of Summer Camps

Summer camps, sponsored by the ADA, for children with diabetes are worldwide and serve about 15,000 to 20,000 children yearly. The camps provide children with diabetes an opportunity for a safe camping experience, to meet and share experiences with peers with diabetes, and to participate in a fun medical education experience. (22,23) This study was conducted in summer of 2002 during two of the aforementioned summer camps (located in a Midwestern state).

One of the camps served younger children between ages 5 and 10. This day camp lasted five days, and children participated in many recreational activities including nature hikes, arts and crafts, swimming, and field trips. Nurses and dieticians were on site each day, and physicians were on call at a nearby children's hospital. The ratio was about four children to each camp counselor. Camp counselors were adolescents with diabetes who previously participated in similar summer camps. Three adult camp directors, affiliated with the ADA, oversaw all camp activities.

The other camp, an overnight camp, lasted six days, and served children between ages 9 and 14. Children were divided into programming groups based on age--the youngest group was between 9 and 10, the juniors between 11 and 12, and the senior group between 13 and 14. Most counselors from the camp for younger children also served as counselors at this camp. Recreational activities included team games, swimming, arts and crafts, sports, and campfire meetings and activities. The senior group also participated in canoeing, leadership activities, and ropes courses. Physicians and nurses were assigned to each group and were present with the children at all times, and dieticians were available for meal planning and consultation. The ratio of campers to counselors and staff staying with the children was about 7:1.

Measures

The "How is School Scale," developed for this study, addressed children's perceptions about the amount of support they needed from teachers, nurses, friends, and parents while at school for: 1) monitoring their blood sugar levels, 2) administering insulin, and 3) following their meal plan. Children recorded their answers to questions on four-point rating scales (1 = "never/none" to 4 = "all the time/every day"). Older children, between ages 11 to 13, completed this measure independently. They read the questions then circled the number representing their response on the four-point rating scale. The first and second authors read questions to younger children, 6 to 10 years. The rating scale still used four points, but was modified so smiley faces helped children understand the anchor points, and children pointed to the face that represented their answer to each question. Some other questions on the scale were designed to gather background information such as "How long have you had your diabetes?;" "Do you have any other medical problems?;" "Does anybody else in your family have diabetes?" Older children completed these questions independently, and the first or second author read these questions to younger children and recorded their responses.

Procedures

Data were collected during medical education time at each camp. Groups were designed to help children process management of their disease in the school setting. Children responded to questions one at a time, using the Nominal Group Technique. (20,28) This technique maximizes possibilities for each child to respond to questions. (20) Children indicated agreement with another child's response by "tagging" it. Young children tagged by nodding to indicate agreement with what a child said, and older children tagged written statements by placing a check mark or dot next to them. (18)

Day Camp Procedures. Groups for younger children consisted of six to eight children who answered questions about how their teachers, nurses, friends, and parents supported their diabetes management at school. They also discussed things that helped them follow their meal plan and monitor their blood sugar level at school. The third author served as moderator for these groups. Her expertise in developing questions and running the groups was critical to the success of the groups, because she herself attended the camps as a child. The first and second authors recorded information during groups. They also acted as interviewers and administered the "How is School Scale" (young children's version) to individual children.

Overnight Camp Procedures. Groups for young adolescents (aged 11 to 14), attending the overnight camp, consisted of about 25 to 30 children per group. At the beginning of the medical education period the children received these instructions:
   "You will go to each table and write your answer to the
   question. If you agree with a peers' answer then put a
   check mark or dot next to it. Please feel free to discuss
   your answers with others. You will go to each table two
   times. The second time will occur after everyone has
   been to the table so that you can see everyone's answers.
   This will give you a chance to indicate your agreement
   with other answers by putting a check mark or dot next
   to them."


Questions addressed how friends, teachers, and nurses could help the children manage their diabetes at school and what kind of help they needed to monitor their blood sugar level, administer insulin, and follow their meal plan at school.

After going to each table to review answers to the questions and possibly add responses, children met in small groups of 6 to 12 to discuss critical issues at school. At the end of the medical education period, camp counselors and the first, second, and third authors worked with all children in a large group to develop a list of critical issues. Older children completed the "How is School Scale" independently, during the small group discussion period.

The group for the youngest children (aged 9 to 10) attending overnight camp was conducted differently to make it developmentally appropriate. Prior to this group, the first and second authors read transcripts from the older children's groups and developed answers for questions about support from teachers, nurses, and friends in the school setting. Next, the second author wrote the questions, which were similar to those used in small groups at the day camp, and answers to the questions on large sheets of poster paper. Children were assigned to one of two areas to complete the two parts of the project. In area one, children read and responded to group questions and put checks by the answers with which they agreed. In area two, the second author administered the "How is School Scale" for young children to each child.

Analyzing Qualitative Data. The Grounded Theory method of constant comparative analysis was used to analyze qualitative data from groups and interviews. (29) The first and second authors independently reviewed transcripts using an open coding method, reviewing transcripts until they reached consensus about key themes. Other researchers used similar methods of textual coding to analyze results from qualitative methods. (19,21,26) Two graduate students, who were unaware of the study hypotheses, coded statements made by the children and determined if each statement represented a positive or negative perception of support at school. The percent agreement formula [(number of agreements/agreements + disagreements) X 100] was used to calculate agreement between raters. They also reviewed transcripts to verify or add to the themes developed by the first and second authors. (29)

RESULTS

Results from Parent Surveys. Parents indicated that 56% of children exercised good control (the child's most recent HgbA1C level was 6 to 7 or lower) of their diabetes. Thirty-nine percent of children recorded an HgbA1C level between 8 to 10, and 4% recorded an HgbA1C level greater than 10. Average time since diagnosis was about four years, with a range of four months to 11 years. Sixty-one percent of parents identified their children as needing help from an adult to manage their diabetes. About 23% of children had been hospitalized for their diabetes. Results from a chi-square analysis indicated that older children (between ages 11 and 14) were more likely to take care of their diabetes independently than younger children (between 6 and 10; [chi square] = 22.85, p [less than or equal to] .001). Specifically, only four of 37 children younger than age 11 could manage their diabetes independently, whereas 25 of 39 older children could manage independently. Children whose parents rated their HgbA1C level in a range representing "good control" were more likely to be managing their care independently than children whose parents reported higher HgbA1C levels ([chi square] (1) = 8.23, p = .016).

Themes From Groups and Interviews. Six categories representing key themes were identified: 1) improving staff knowledge, 2) availability of supplies and snacks, 3) flexibility, 4) help with lows, 5) reminders, and 6) support from other people to help them manage their diabetes at school. Quotes by children representing major themes for each category also are presented in Figure 1.

Children of all ages at both camps reported that teachers, nurses, and friends needed to improve their knowledge about diabetes. Both older and younger children also reported that having their test kits and snacks available whenever they needed them was important. Several children reported that nurses did not come to their school every day, and they worried about what might happen if they "got very low" and no one was there to help them (Figure 1). One boy said that, "My school won't keep my supplies for my diabetes in the nurse's office. They make me go to the hospital if I'm low. If I had to wait too long I would die." The boy's camp physician contacted his school about this problem.

Children also talked about teachers needing to be flexible. Children reported that teachers should let them test their blood sugar again if their results were low. Also, children said or wrote that they needed to take breaks when feeling low, even if the teacher was in the middle of a lecture or if they were taking a test. They wanted their teachers to understand and not call too much attention to them when this need occurred. They reported similar issues working with nurses.

Children mentioned it would help if nurses and teachers learned to distinguish between when they were "very low" (about to have a hypoglycemic episode) and just a "little low." Children reported a fear of hypoglycemic episodes and felt they needed immediate assistance from a nurse if, "I feel real low." They reported that friends could help most by providing support when they were "low," by telling others or helping them walk to the nurse's office. Children said they would like "reminders," especially to remember to test and snack, but a fine line existed between the right amount and too many reminders.

Children mentioned that participating in after-school activities was difficult. Nurses were not always on site, and their supplies were often locked in the nurse's office. Older children (aged 11 to 14) reported that their coaches needed more knowledge about diabetes, whereas younger children typically said their mothers' helped them manage their diabetes while playing sports. The 11- to 12-year-old group (Juniors) and the 13- to 14-year-old group (Seniors) ended their sessions by developing a "critical issues list" as a guide to improving care for children with diabetes in schools. These lists were similar in nature and were combined into one list (Figure 2).

Graduate students who reviewed interview and group transcripts showed close agreement (91% agreement) about whether the statements made by children were positive or negative. Most children's remarks (n = 242) involved things that friends, teachers, and nurses do to support them at school. Only 56 comments regarding nonsupportive behavior were recorded. Children's needs for support varied. Some children reported needing support managing their diabetes, such as having snacks available and being able to test at all times. Other children mentioned needing emotional support from teachers, nurses, and peers. Some children needed encouragement from others to help them follow meal plans, and to remember to test and eat a snack immediately when they felt low. Conversely, other children reported they could manage on their own, and overt support from others might be intrusive.

Results from the "How is School Scale." Data provided by children on the "How is School Scale" was used as a source for additional data on the same topics identified in the groups, to verify findings from qualitative analyses. A chi-square analysis showed no differences in boys' and girls' ratings for amount of support they needed from nurses, teachers, and friends. They needed a moderate amount of support from all three. Younger children reported needing more support from teachers ([chi square] (1) = 5.22, p < .05) and nurses ([chi square] (1) = 20.29, p < .001) than older children. Results indicated no difference in younger and older children's ratings for the amount of support children needed from friends; both groups required a moderate level of support from their friends.

DISCUSSION

Results provided useful information for teachers, nurses, counselors, and other professionals to improve their ability to help children manage their diabetes while at school. Findings indicated young adolescents were taking significant steps toward self-care and that many younger children were managing their diabetes independently. Children needed support in six areas: educating staff, availability of supplies, teacher flexibility, help with hypoglycemic episodes, reminders to follow their regimens, and emotional support. Results from analyses of quantitative data both supported and added to results from qualitative analyses. (12,21,29) These analyses indicated that younger children, and children not managing their diabetes effectively, required more support from nurses and teachers than did young adolescents and children managing their illness effectively. Irrespective of age, youth needed teachers to be flexible in allowing them to follow their medical regimens in the classroom. Using a mixed-methods approach proved advantageous in providing a better understanding of children's perceptions of support for their illness (ie, how much support is needed and ways that teachers and nurses can support them). (17,20,21)

Findings suggested some individual differences in the types of support children needed. For example, some needed help buying lunch in the cafeteria, whereas others needed encouragement from friends to follow their medical regimens at school. Some children felt most comfortable managing on their own at school and not discussing their care with others.

Individual differences in children's perceptions of stressful and supportive behaviors by nurses and teachers should be considered when developing action plans for schools. Improving care plans for children and younger adolescents, and giving them a role in developing care plans, may assist children in continuing to take more responsibility for their diabetes management. This approach may lead to better preparation for the greater degree of self-care typically assumed by children during middle and late adolescence. Implementing assessment techniques and interventions offers a direction for future research. Quittner and colleagues developed a role-play inventory of situations and coping strategies for youth with cystic fibrosis that provides an example of an individualized approach to assessing children's needs for support. (30,31)

Consistent with previous research, the children reported concerns about experiencing a hypoglycemic episode at school. (15) Teachers and nurses could offer assistance by ensuring diabetic supplies and snacks are available and by allowing the children to retest their blood sugar level as needed. Fear of hypoglycemic episodes was the most significant stressor. Most children's comments, however, addressed things that teachers and nurses could do to support them at school. For example, they reported that nurses and teachers could support them by improving the availability of snacks, juice, and diabetic supplies. Teachers also could offer support by being more flexible and allowing children to eat snacks, check their blood sugar levels, and take breaks as needed during class. (16)

Some children reported that a nurse was not at school every day. Budgetary constraints can limit staffing at school health centers. If a child with a chronic illness like diabetes is enrolled, school staff need to ensure that medical care is available on days the nurse is not on site. In addition, nurses need to make sure that children and their teachers know the plan of action for days they are absent. This approach may relieve stress and anxiety for children, especially those afraid of hypoglycemic episodes.

Teachers may need more education about the special needs of children with diabetes. (4,6,13,14) They can support students with diabetes by helping these children explain their diabetes to peers. (16) According to children in this study, teachers may provide optimal assistance when they allow children to follow their medical regimens even if it disrupts classroom activities. They also can help by telling children when they observe them as lethargic or less alert than usual. This approach can be an important reminder if children do not realize they are beginning to experience a low.

Children also reported that sport coaches need more education about diabetes. Moreover, they mentioned that school action or care plans need to include ideas for after-school care. Examples include keeping snacks around during after-school activities and making sure someone can open the nurse's office if a child needs diabetic supplies. This precaution will improve opportunities for children with diabetes to participate in after-school activities with peers.

Several limitations existed for this research. For example, about one-half (56%) of children in the sample were in good control of their diabetes, so these findings may prove most applicable for children doing fairly well in terms of diabetes management. The results might have been more useful if the researchers could have used data from medical records, and if information about why some children had elevated HgbA1C levels was obtained. In addition, children and parents volunteered to participate in the project, so not all children at the camps participated, which limited the generalizability of the results. Individual interviews may have revealed more information from children with problems related to diabetes management at school, because some children may hesitate to discuss problems when in groups with peers. Future studies may yield more information if researchers ask children what type of education would be most helpful to improve support from nurses, teachers, and friends. Another question that also might yield helpful information from children is: "What do you need to care for your diabetes at school that is not happening?" Information about teacher perceptions of what they know about diabetes, and how they and the school can support children with diabetes, will prove useful in assisting nurses and school health center staff in their efforts at improving teacher education. (13,14)

CONCLUSION

Results indicated children and young adolescents with diabetes provided many useful ideas about how teachers, nurses, and friends could provide support during school. Qualitative techniques were a useful method for learning about young children's perceptions of living with their chronic illness. Using a mixed-methods approach also helped verify study findings. (17-21) To enhance safety and appropriate support at school, diabetes educators and nurses need to distribute educational material in schools and after-school programs, offer educational programs, and provide models of care plans. Steps to address safety issues (eg, what to do in case of a hypoglycemic episode) also need to be incorporated into these plans. Finally, parents need to ensure that school nurses prepare individualized and flexible care plans in partnership with the children, their parents, and their pediatricians, and ensure care plans are shared with teachers. (4,13)
Figure 1

Representative Comments about Support at School

Category                  Children's Comments

Knowledge                 "Teachers and substitute teachers need to
about Diabetes            be educated--they should take classes."
                          "The nurse should have knowledge about
                          diabetes before talking to the kid; don't
                          make the kid provide all the knowledge
                          about the disease."

Availability              "It would help to have all the supplies at
                          school when you need them." "Being able to
                          carry my meter with me at all times (so I
                          can test when I need to)." "... need food in
                          classroom to eat when blood sugar is low."

Flexibility               "They (teachers) are flexible when I have a
                          dilemma; like when I'm low and need to go to
                          the nurse's office; they have supplies (like
                          food) on hand if I'm in trouble," "They
                          (teachers) let me set up my test kit when I
                          need to." "She (teacher) lets me go to the
                          bathroom when I need to test."

I Need Help               "When I'm low I need the nurse to help me
with My Lows              check my sugar (blood sugar level)." "It
                          takes me a long time to get up from a low.
                          Regular pop works better than juice for me
                          to get up faster and the teacher should have
                          some around," "Friends can share food with
                          me if I'm low at lunch and don't have enough
                          to eat."

Reminders                 "The teacher sets the timer so I know when
                          to have a snack." "When I usually get low
                          (around lunch time) the nurse comes and
                          reminds me to test."

Support from              "When I'm low my friends can walk with me to
Other People at School    the nurse, If i have my head down and don't
                          feel good they can check on me and tell the
                          teacher that I'm low." "The teacher can give
                          me confidence and walk me to the nurse."
                          "The nurse can watch me test and record how
                          my blood sugar is doing in a chart."

Figure 2

Critical Issues List

Critical Issues                Who Can Help

Improve knowledge              Everyone: Nurses, Teachers,
of diabetes.                   Friends, Substitute Teachers,
                               Cafeteria Staff

Nurse should be                Nurses
there every day.

Let me keep my test            Teachers
kit with me and allow
me to retake tests if
I need to.

Supplies, especially           Teachers, Nurses
snacks should be
available.

Walk with me to the            Friends, Teachers
nurse if I feel really low.

Encourage me to stick          Friends, Teachers
to my meal plan.

Don't eat junk food in         Friends
front of me or have
alternative snacks
and treats for me.


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(31.) Quittner AL, Tolbert VE, Regoli M J, Orenstein DM, Hollingsworth JL, Eigen H. Development of the role-play inventory of situations and coping strategies for parents of children with cystic fibrosis. J Pediatr Psychol. 1996;21(2):209-235.

Laura Nabors, PhD, Assistant Professor, (naborsla@email.uc.edu); and Heather Lehmkuhl, MS, (lehmkuh@email.uc.edu); Mail Location 376, Dept. of Psychology, University of Cincinnati, Cincinnati, OH 452210376; Nicole Christos, 1099 Waycross Road, Cincinnati, OH 45240; (christnm@ucmail.uc.edu); and Teresa L. Andreone, MD, PhD, Cardinal Glennon Children's Hospital, Room 2905, 1465 S. Grand Blvd., St. Louis, MO 63104; (andreone@slu.edu). This project was conducted with support from the American Diabetes Association and the University of Cincinnati. This article was submitted October 30, 2002, and revised and accepted for publication April 11, 2003.
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Author:Nabors, Laura; Lehmkuhl, Heather; Christos, Nicole; Andreone, Teresa L.
Publication:Journal of School Health
Geographic Code:1USA
Date:Aug 1, 2003
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