We want to share with you the important findings of a recent Survey regarding Diabetes.

Please read this letter and the following Executive Summary results.
Click for the link to "Recommendations for Management of Diabetes for Children in School" Manual
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Background

Parent to Parent of Vermont, in collaboration with the Vermont Department of Health/Children with Special Health Needs, was engaged to perform a family-centered assessment of the needs of Vermont children with diabetes and of their families. The goal of the project was to have an overall statement about Vermont's children with diabetes and their families and to provide recommendations regarding the role and implementation of strategies for Children with Special Health Needs in meeting the identified needs. Lynn Ann Reynolds, Ph.D., and Kathleen B. Kennedy, Ph.D., who are clinical psychologists with training, experience and interest in the areas of diabetes in children and family-centered care, conducted the needs assessment from January 1999 through April 1999.

Methods

The first step in the assessment of needs of Vermont children with diabetes was to define the population of children with diabetes in the state of Vermont. All general practice pediatricians and family practitioners in the state of Vermont were contacted, asking them to delineate the number of children with diabetes for whom they provide primary care.
Recruitment of participants in this project occurred through the posting of fliers in primary care physicians' offices; direct mailing of fliers to all families followed for specialty care at Fletcher Allen Health Care (FAHC) and at Dartmouth Hitchcock Medical Center (DHMC); and posting or sending of fliers to families by diabetes educators throughout Vermont.

Parents attended one of three different focus groups held across the state: Burlington (four families), Rutland (four families), and St. Johnsbury (three families). Individual interviews were completed with a total of nine parents who were interested in participating and could not attend focus groups; most of the interviews were by telephone, although two occurred in person. Two additional sources of information were an informal support group for parents of children with diabetes, attended by seven families (parents from two of those families later completed individual interviews), and three FAHC support groups for children and adolescents, attended by a total of seven previously non-participating families.

Focus groups and interviews were conducted following a basic outline. Parents were initially asked to describe their top three needs, issues, and/or positive experiences related to their child's diabetes. They were then asked to describe their experiences, both positive and negative, in relation to the following areas: primary health care; specialty health care; care coordination; care in community settings (i.e., school, daycare, respite, recreation, etc.); psychosocial adaptation: child, parents, and siblings; financial/insurance; transitions: diagnosis, entering daycare/school, puberty, adulthood; and information. Finally, they were asked to prioritize the needs they had identified.

In addition to the focus groups and individual interviews with parents, individual interviews with health care providers were also completed. The five primary care physicians who participated were general pediatricians from across the state, chosen based on their self-report of caring for five or more children with diabetes. Ann Christiano, MS, RN, CDE, Pediatric Diabetes Coordinator at DHMC, Mary Alice Giannoni, MS, ANP, CDE, Diabetes Nurse Practitioner at FAHC, Becky Beaudoin, RN, a nurse educator for newly-diagnosed children at FAHC, and Nathaniel Clark, MD, the FAHC pediatric endocrinologist also participated. Providers were asked to describe their perceptions of the needs of Vermont families who have children with diabetes.

1 Throughout this document, the term "children" will be used to refer to all children and adolescents between the ages of birth to 21 years.

Definition of Population
With 84% (73/87) of pediatricians and 49% (115/235) of family practitioners responding, 207 children and adolescents with diabetes in Vermont were identified. Of those families, 31 participated in the project. Demographic information on the population and the sample were similar, so it was believed that the sample adequately represented the population.

Major Themes
In general, findings from focus groups, individual interviews, and interviews with health care providers were remarkably similar. Both families and providers seem to agree on the general areas in which needs exist for Vermont families who have children with diabetes, although there were differences in focus and emphasis between families and providers. The areas that were identified include schools, psychosocial services and support, respite, information, health care costs and insurance, primary and specialty health care, and care coordination.

Schools
Although some families identified helpful and accommodating school systems, difficulties around public school education were repeatedly described. Parents reported that, not by choice, they held major responsibility for educating their child's school about diabetes and for following through to make sure that accommodations were being made. Many were made aware of the concept of a 504 plan for their child only by chance and several reported problems in working with the school to develop and implement the plan. Frequently reported problems in the school setting included changing or eliminating snack time, inappropriate treats at birthday parties and other celebrations in school, and not informing substitute teachers about the presence of a child with diabetes in the class. Changing schedules at school, special events (i.e., field trips), and long rides on the school bus were other reported areas of difficulty. Several parents indicated they felt there was a need for more education of school personnel regarding diabetes, due to misinformation about the disease within the schools.

Information
Access to information, both at the time of their child's diagnosis with diabetes and on an ongoing basis, was another major need identified by parents. Parents described a need for both medical information and for information about resources-financial, psychological, and social. Parents were able to identify many valuable resources that they have discovered through trial and error, and felt strongly that such information should be disseminated in an organized way to other parents. They expressed the desire for a resource guide at diagnosis, for a centralized location to obtain information (with open communication among the American Diabetes Association, Parent to Parent, and FAHC), and for more information from their health care providers. With regard to accessing specific types of information, parents indicated they were having difficulty regarding times of transition for their child (e.g., starting school, puberty, entering high school). Generally, at these times, parents are seeking education regarding physical, psychological, and developmental changes that can be expected to occur, as well as methods of managing these changes. Health care providers agreed with parents about the need for the dissemination of information at the time of diagnosis, as well as on an ongoing basis. They described the challenge of the varying levels of education, literacy, and comfort levels attained by parents, acknowledging that a flexible approach by care providers is necessary. A final area of inadequate information identified by parents is that of the general public's knowledge about diabetes. Several parents recounted misunderstanding and misconceptions by members of the public in talking about diabetes

Psychosocial Services and Supports
Psychosocial services and supports were a need identified by many families. Parents living in more rural areas of the state described a sense of isolation; many parents acknowledged the importance of connecting with other families with children with diabetes, particularly at diagnosis, but several parents indicated that this has not been happening systematically. Parents also desire increased access to other children with diabetes for their children. The provision of psychosocial support to all family members (i.e., parents, child, and siblings), both individually and in groups, was repeatedly mentioned as being important, yet not always available. Parents would also like support to be age-specific for their child, which sometimes, but not always occurs. Having support groups that meet locally was commonly identified as a major need often not being met.

Respite
Respite was identified as another major need. Although this issue seemed to be more salient for parents of younger children and for those of children with other special health needs, most parents identified a need for respite. In describing their needs for respite, parents reported desiring trained care providers who are comfortable caring for a child with diabetes for an extended period (i.e., overnight) without requiring repeated contacts with the parents. Even when respite services were available, parents frequently seemed unaware of their existence.

Health Care Costs and Insurance
Another area of need identified by focus and support groups was the area of health costs and insurance. While all families reported having insurance coverage, and most who had experienced insurance coverage for diabetes-related expenses both before and after the passage of Title 8 § 4089c could attest to the benefits of the law, most families still described financial and insurance problems related to diabetes. These included: 1) large out-of-pocket medical expenses; 2) limits set by the insurance company on diabetes-related supplies such as insulin, test strips, and glucagon; 3) extensive paperwork for both families and primary care physicians to complete; and 4) lack of coverage for certain health care providers resulting in the need to change providers, forego a desired consultation, or pay out of pocket for care obtained from those providers. Parents also reported lacking knowledge about what should and should not be covered according to Title 8 § 4089c,whether and how to apply for supplementary insurance (Dr. Dynosaur, SSI), and who to contact for assistance with these questions. Finally, even parents who stated they have good insurance coverage reported being concerned about the possibility of losing or changing their health insurance.

Primary and Specialty Health Care
Families' experiences of health care, both primary care and specialty (diabetes) care varied by individual family, with both positive and negative experiences reported. However, consistent across families were descriptions of behaviors seen as important from health care providers. With all health care providers, respect, active listening, positive acknowledgement of the parent's role in care, and flexibility of care are appreciated, as are open, direct responses to questions, apologies for errors or for making a family wait, and not rushing families through clinic appointments or telephone consultations. Families appreciate primary care physicians who are educated about diabetes, and if not well informed, then willing to learn. With the diabetes specialist in particular, parents appreciate anticipatory guidance around child development and diabetes, and many want updates on new technologies and treatment techniques. With regard to clinics attended by their child, parents would like to have a clinic more local to their homes, to decrease the need for travel at least somewhat. They value interdisciplinary clinic experiences and find support groups that are part of their clinic experience to be particularly helpful.

Overall, families described satisfaction with their care to be so essential that several families had changed their child's specialty care due to dissatisfaction. In addition, several other families identified a number of concerns regarding their child's specialty care. These concerns included: inaccessibility of the specialist, particularly by telephone; a perceived lack of knowledge regarding both medical and developmental aspects of childhood diabetes; and a reluctance to assist with diabetes-related problems in community settings.

Care Coordination
No parents volunteered care coordination as an issue, and when asked, no one had access to a care coordinator on the basis of their child's diabetes. While most families seemed to think the concept of care coordination was a good one, families with more demands and/or fewer resources (i.e., single parent, multiple needs child) seemed most attracted to the idea. One parent noted that it would be helpful to have an advocate with "understanding (about type I diabetes) and clout".

Based on the results of this needs assessment, the following recommendations are offered to Children with Special Health Needs and Parent to Parent of Vermont:

1) Schools
a. Parent to Parent of Vermont should include families with diabetes in their joint efforts with the Vermont Department of Education and Vermont Parent Information Center (VPIC) to address school issues for children with chronic illnesses and disabilities.
b. The Diabetes Control Program, Vermont Department of Health, should assess the impact of the manual Recommendations for Management of Diabetes for Children in School on knowledge about diabetes and behavior of school personnel towards children with diabetes and their families

2) Information
a. Parent to Parent of Vermont should increase awareness of and access to its programs and resources for all Vermont families who have children with diabetes, with an emphasis on reaching families at the time of diagnosis.
b. Parent to Parent of Vermont and Children with Special Health Needs should continue to develop their partnerships with Fletcher Allen Health Care and the American Diabetes Association to improve the coordination and dissemination of relevant information, medical and non-medical, to Vermont families who have children with diabetes.
c. A loose-leaf resource manual should be developed that can be provided to families at diagnosis. This manual would contain information from relevant organizations (i.e., FAHC, American Diabetes Association, Parent to Parent) developed with the input of parents of children with diabetes, and organized to provide information regarding specific areas of concern (e.g., supplies, support, insurance, schools, etc.)
At the time of diagnosis, permission should be obtained from parents to have someone affiliated with Parent to Parent contact them, increasing the opportunity for parents to have swift access to support groups and other parents of children with diabetes. It is recommended that Parent to Parent and FAHC develop a system to ensure that this contact occurs.
d. One useful way of addressing the challenge of a lack of understanding of Type I diabetes by the general public would be to provide a public service announcement. This should be coordinated with the Diabetes Coalition, which has already made progress on the general issue of the general public's lack of understanding about diabetes.

3) Psychosocial
a. Children with Special Health Needs, Vermont Department of Health, in partnership with Fletcher Allen Health Care, should develop and fund clinic-based age-specific diabetes support groups, concurrently run for children and their parents, and moderated by mental health professionals trained and experienced in both child development and diabetes.
b.It is also recommended that Children with Special Health Needs, Vermont Department of Health, in partnership with Fletcher Allen Health Care, explore the feasibility of funding a position for a psychologist trained and experienced in diabetes and knowledgeable about developmental and behavioral issues, to be part of a interdisciplinary specialty clinic for children with diabetes at FAHC.

4) Respite
a. Parent to Parent should work to increase awareness of its existing programs that benefit families who need respite (i.e., Family Support Funds, Childcare), and to expand the Childcare program to benefit families living outside of Chittenden county. This might include developing partnerships with colleges around the state and duplicating the successful collaboration between the University of Vermont Department of Physical Therapy and Parent to Parent to provide respite to families of children with diabetes.
b.It is additionally recommended that Parent to Parent facilitate the development of an organized network of childcare providers for children with diabetes by identifying adolescents with diabetes, and adolescent siblings of children with diabetes, who would be willing to provide childcare for families who have a child with diabetes.
c. It is recommended that increasing the availability of local camp opportunities be considered. For example, Children with Special Health Needs, Vermont Department of Health, in partnership with the American Diabetes Association, should investigate the feasibility of organizing, and/or supporting the organization of, an overnight diabetes camp in Vermont as well as a diabetes daycamp in Vermont for younger children with diabetes.

5) Health care costs and insurance
a. Parent to Parent of Vermont should work to increase awareness of and access to its health care financing consultants for Vermont families who have children with diabetes.
b.Despite recent legislation mandating the coverage of supplies and medical treatment of children in Vermont with diabetes by managed care and insurance companies, it is unclear whether or not all families actually receive this coverage. It is therefore recommended that Children with Special Health Needs, Vermont Department of Health, in conjunction with relevant state agencies, evaluate the impact of this legislation and work to increase its implementation where necessary.

6) Primary and Specialty Care
It is recommended that Children with Special Health Needs, Vermont Department of Health, collaborate with Fletcher Allen Health Care to expand outreach clinics for Vermont children with diabetes. These interdisciplinary outreach clinics should be family-centered and include a dietician, a nurse educator, and a psychologist, in addition to a pediatric endocrinologist.

7). Care Coordination
Finally, it is recommended that Parent to Parent of Vermont expand the Medical Home Project to medical practices throughout the state who care for children with diabetes, and should partner with medical practices attempting to provide care coordination to the families they serve.

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