Marianne Buzby

Parents' perceptions of factors that affect successful diabetes management for their children

Objective. To learn which factors parents perceive to be most influential in determining successful type 1 diabetes management. Methods. A 4-stage mixed qualitative-quantitative method that consists of a series of focus groups, a survey, and in-depth interviews was used to ensure that parents generated, prioritized, and explained their own ideas. In each stage, parents offered a new level of insight into their perception of how children achieve good metabolic control while living as normal a life as possible. The survey responses were divided into statistically different ranks, and the Kruskal-Wallis test was used to compare the results between subgroups. Results. A total of 149 parents participated in the formative qualitative phases, 799 families (66%) responded to the parent-generated survey, and 67 explanatory interviews were conducted. The families who responded to the survey had children of varied ages (mean: 11.9 years; SD: 4.44) and diabetes control (mean hemoglobin A1c: 8.22%; SD: 1.65); 84.1% of respondents were white, 12.3% were black, and 89% were privately insured. The 30 survey items were statistically discriminated into 8 ranks. The items cover a wide range of categories, including concrete ways of achieving better control, families’ or children’s traits that affect coping ability, actions of the health care team that support versus undermine families’ efforts, and the availability of community supports. No clear pattern emerged regarding 1 category that parents perceived to matter most. Conclusions. Clinicians can affect many of the factors that parents perceive to make a difference in whether they can successfully raise a resilient child in good diabetes control. Future research needs to determine whether health care teams that address the concerns that parents raised in this study are more effective in guiding children to cope well with diabetes, to incorporate healthier lifestyles, and ultimately to achieve better metabolic control.

Parental Expectations in the Care of Their Children and Adolescents With Diabetes

There is little research about what parents of children with diabetes want and need from their health-care providers as they negotiate life with diabetes. Sixty-three parents of children with type 1 diabetes were interviewed. Interviews were tape-recorded and transcribed verbatim, and a content analysis of text data was conducted. Three themes emerged describing what they wanted in their relationships with diabetes providers: laying the foundation, providing clinical care, and engaging families as partners. Collectively, these data provide vivid insights into the parents perspective regarding their needs from diabetes providers as well as their perceptions of interactions that were unhelpful or worse, hurtful or undermining.

Partnerships With Providers: Reflections From Parents of Children With Type 1 Diabetes

Sixty-three parents with a child or an adolescent with type 1 diabetes participated in this study that focused on what helped them “live well with diabetes.” Beyond medical expertise, parents described a partnering relationship with their provider as one of the factors that supported their efforts to live well with diabetes. Parents reported that a partnership was enhanced when the provider had the ability to understand the dynamic nature of the journey in living with diabetes, connect with their family and set the tone by inviting them to openly communicate about all aspects of family life impacting diabetes care, recognize when and how the provider may have to assume the role of Captain of the Ship in times of need, and empathize and respond therapeutically to intense emotions inherent in managing diabetes over time.

Celiac disease: the endocrine connection.

CD is an immune-mediated enteropathy caused by genetically predisposed individuals eating gluten-containing foods (Catassi et al., 2007; Celiac Working Group et al., 2008; Green & Cellier, 2007; Hill et al., 2005). There are several endocrine disorders that are associated with CD. In many of these cases, CD does not present with the typical gastrointestinal symptoms. Nurses working with children who have endocrine conditions need to consider CD as part of the differential and follow-up care plan. This awareness will facilitate more efficient diagnosis and minimize the risk of conditions associated with untreated CD.

Clinical reportAssessment of hyperbilirubinemia in full-term infants: Part II

The nurse practitioner plays an important role in assessing infants for factors that may contribute to unconjugated bilirubinemia. Healthy, full-term infants with unconjugated hyperbilirubinemia and no evidence of hemolysis require monitoring of their total serum bilirubin levels and stooling patterns, and they need encouragement to feed more frequently to resolve the hyperbilirubinemia. Promoting frequent breast-feeding is essential, especially for infants with unconjugated hyperbilirubinemia. For those infants with evidence of hemolysis or exaggerated physiologic jaundice, more advanced medical intervention such as phototherapy and exchange transfusion are available when indicated.

Assessment of hyperbilirubinemia in full-term infants: Part I

Nurse practitioners are in a key position to assess one of the most common problems in the full-term infant, unconjugated hyperbilirubinemia. Armed with a clear understanding of the pathophysiologic pathways that may cause and/or contribute to the development of unconjugated hyperbilirubinemia and the associated jaundice, the practitioner will be successful in helping the family understand their childs illness. A careful history and physical examination will guide the practitioner to the appropriate diagnostic studies, which will confirm that the infant has unconjugated hyperbilirubinemia and is at low risk for complications.