ABSTRACT
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.
Subject(s)
Child Health/trends , Communication , Diabetes Mellitus, Type 1 , Parent-Child Relations , Parents/psychology , Physician-Patient Relations , Self Care/standards , Adolescent , Female , Focus Groups , Humans , Male , Qualitative Research , Surveys and QuestionnairesABSTRACT
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 parent's perspective regarding their needs from diabetes providers as well as their perceptions of interactions that were unhelpful or worse, hurtful or undermining.
Subject(s)
Diabetes Mellitus, Type 1/therapy , Parents , Patient Satisfaction , Physician-Patient Relations , Adolescent , Child , Disease Management , Humans , Power, PsychologicalABSTRACT
Managing diabetes in a child or teen requires constant attention and adjustment of insulin, carbohydrate intake, and activity level. Intensive diabetes management has the potential to improve diabetes outcomes; however, negotiating the many lifestyle accommodations essential to optimal diabetes control can place a significant burden on some children and families. Parenting a child with diabetes also involves a complex process of helping the child to achieve age-appropriate independence while assuring the child's safety in managing his or her diabetes. Each developmental stage brings new challenges to achieving the delicate balance between optimal diabetes control and age-appropriate independence in self-care management. Despite the laborious and intensive nature of diabetes treatment, an overarching goal of parenting a child with diabetes is to ensure that the family's quality of life is maintained and the child is able to participate in all academic and social activities that their peers enjoy. Although many families adapt and thrive, others struggle to make these adjustments. Working with families who are overwhelmed, encouraging them to identify and develop networks involving schools, extended family, community, and church groups can help them to increase available support. Helping families to access treatment when they are struggling can relieve further pain and improve management adherence and diabetes outcomes. Nurses are in a key position to evaluate the family's adaptive and coping skills and assist them to negotiate the psychosocial challenges that living with diabetes entails.
Subject(s)
Child Welfare/psychology , Diabetes Mellitus/psychology , Parent-Child Relations , Parenting/psychology , Professional-Family Relations , Social Support , Adolescent , Attitude to Health , Child , Child Rearing/psychology , Diabetes Mellitus/therapy , Family Health , Humans , Pediatrics , Quality of Life , United StatesABSTRACT
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.
