Barriers and facilitators to taking on diabetes self-management tasks in pre-adolescent children with type 1 diabetes: a qualitative study.

BACKGROUND: When children with type 1 diabetes approach adolescence, they are encouraged to become more involved in diabetes self-management. This study explored the challenges pre-adolescent children encounter when self-managing diabetes and the factors which motivate and enable them to take on new diabetes-related tasks. A key objective was to inform the support offered to pre-adolescent children. METHODS: In-depth interviews using age-appropriate questioning with 24 children (aged 9-12 years) with type 1 diabetes. Data were analysed using an inductive, thematic approach. RESULTS: Children reported several barriers to taking on self-management tasks. As well as seeking respite from managing diabetes, children described relying on their parents to: perform the complex maths involved in working out carbohydrate content in food; calculate insulin doses if they did not use a bolus advisor; and administer injections or insert a cannula in hard-to-reach locations. Children described being motivated to take on diabetes tasks in order to: minimise the pain experienced when others administered injections; alleviate the burden on their parents; and participate independently in activities with their peers. Several also discussed being motivated to take on diabetes-management responsibilities when they started secondary school. Children described being enabled to take on new responsibilities by using strategies which limited the need to perform complex maths. These included using labels on food packaging to determine carbohydrate contents, or choosing foods with carbohydrate values they could remember. Many children discussed using bolus advisors with pre-programmed ratios and entering carbohydrate on food labels or values provided by their parents to calculate insulin doses. Several also described using mobile phones to seek advice about carbohydrate contents in food. CONCLUSIONS: Our findings highlight several barriers which deter children from taking on diabetes self-management tasks, motivators which encourage them to take on new responsibilities, and strategies and technologies which enable them to become more autonomous. To limit the need to perform complex maths, children may benefit from using bolus advisors provided they receive regular review from healthcare professionals to determine and adjust pre-programmed insulin-to-carbohydrate ratios. Education and support should be age-specific to reflect children's changing involvement in self-managing diabetes.

Parents' information and support needs when their child is diagnosed with type 1 diabetes: a qualitative study.

AIM AND OBJECTIVE: The aim of this study was to describe and explore parents' information and support needs when their child is diagnosed with type 1 diabetes, including their views about the timing and chronology of current support provision. Our objective was to identify ways in which parents could be better supported in the future. DESIGN AND PARTICIPANTS: Semi-structured interviews were conducted with 54 parents of children with type 1 diabetes in four paediatric diabetes clinics in Scotland. Data were analysed using an inductive, thematic approach. FINDINGS: Parents described needing more reassurance after their child was diagnosed before being given complex information about diabetes management, so they would be better placed psychologically and emotionally to absorb this information. Parents also highlighted a need for more emotional and practical support from health professionals when they first began to implement diabetes regimens at home, tailored to their personal and domestic circumstances. However, some felt unable to ask for help or believed that health professionals were unable to offer empathetic support. Whilst some parents highlighted a need for support delivered by peer parents, others who had received peer support conveyed ambivalent views about the input and advice they had received. CONCLUSIONS: Our findings suggest that professionals should consider the timing and chronology of support provision to ensure that parents' emotional and informational needs are addressed when their child is diagnosed and that practical advice and further emotional support are provided thereafter, which takes account of their day-to-day experiences of caring for their child.

Improving communication and recall of information in paediatric diabetes consultations: a qualitative study of parents' experiences and views.

BACKGROUND: Parents of non-adolescent children with type 1 diabetes are responsible for most of their child's diabetes management tasks. Consultations are used to provide diabetes education, review clinical progress and promote diabetes management tasks. This study explored parents' experiences of, and views about, their child's diabetes consultations. The objective was to identify ways in which consultations could be improved to aid communication, understanding and knowledge retention. METHODS: In-depth interviews with 54 parents of children (aged ≤12 years) with type 1 diabetes. Data were analysed using an inductive thematic approach. RESULTS: Parents' accounts revealed structural and contextual factors which could hinder effective communication and knowledge acquisition during consultations. Most reported feeling anxious going into consultations and worrying about being reprimanded by health professionals if their child's glycaemic control had not improved. As a consequence, many parents highlighted problems concentrating and assimilating information during consultations. In extreme cases, worries about being reprimanded led parents to omit or fabricate information when discussing their child's treatment or even to their cancelling appointments. Many parents described wanting opportunities to speak to health professionals alone because young children could be distracting and/or they did not want to raise distressing issues in front of their child. Parents described the benefits of receiving clinical advice from health professionals familiar with their family circumstances and disliking attending busy clinics and seeing different health professionals on each occasion. Parents also highlighted the benefits of receiving treatment recommendations in a written form after the consultation. DISCUSSION AND CONCLUSIONS: This study has highlighted unrecognised and undocumented aspects of the consultation which may result in parents leaving uncertain about the main issues discussed and with questions unanswered and support needs unaddressed. Structural and contextual changes to consultations are recommended to improve concentration, knowledge acquisition and retention. These include: sending letters/written summaries after consultations highlighting key decisions, providing opportunities for parents to consult health professionals without their child being present, encouraging parents to ask more questions during consultations, having procedures in place to promote continuity of care and providing parents with consistent and non-contradictory advice.

Pathways to diagnosis: a qualitative study of the experiences and emotional reactions of parents of children diagnosed with type 1 diabetes.

OBJECTIVE: The aim of this study was to explore from parents' perspectives the circumstances and events which led to their child being diagnosed with type 1 diabetes (T1D). The objective was to understand reasons for delays in seeking treatment and parents' emotional reactions to diagnosis so others can be better informed and supported in future. METHODS: In-depth interviews with 54 parents of children (aged ≤12 yr) with T1D were conducted. Data analysis used an inductive, thematic approach. RESULTS: Parents described a 'prompt' and a 'delayed' pathway to their child being diagnosed. Parents who considered the diagnosis to be 'prompt' reported how they, or other people, had recognized their child had developed symptoms of T1D which resulted in a rapid presentation to health care professionals. In contrast, parents who perceived their child's diagnosis to be 'delayed' did not recognize signs of T1D and attributed their child's deteriorating health to other conditions, being out of routines and/or their stage of development. These parents often only sought medical help when symptoms became extreme. All parents were distressed by their child's diagnosis; however, parents in the 'delayed' pathway expressed unresolved feelings of guilt, particularly when their child was diagnosed with diabetic ketoacidosis. DISCUSSION: Parents' and other people's knowledge about T1D can affect the duration between onset of their child's symptoms and diagnosis. Campaigns to raise awareness should ensure that parents are made aware of symptoms and that T1D can develop during childhood. Health care professionals could discuss with parents the events preceding their child's diagnosis to better determine their emotional support needs.

Prevalence of impaired awareness of hypoglycemia and identification of predictive symptoms in children and adolescents with type 1 diabetes.

BACKGROUND: In children with type 1 diabetes mellitus (T1DM) the prevalence of impaired awareness of hypoglycemia (IAH) is uncertain. This study aimed to ascertain this with greater precision. Secondary aims were to assess symptoms of hypoglycemia and which of these best predict awareness of hypoglycemia in children. METHODS: Questionnaires were completed by 98 children with T1DM (mean age 10.6 yr) and their parent(s); hospital admission data for the previous year were collected. Awareness of hypoglycemia was assessed using two questionnaire-based methods that have been validated in adults. For 4 wk, participants performed routine blood glucose measurements and completed questionnaires after each episode of hypoglycemia. Principal components analysis determined how symptoms correlate; multinomial logistic regression models identified which symptom aggregate best predicted awareness status. RESULTS: The 'Gold' questionnaire classified a greater proportion of the participants as having IAH than the 'Clarke' questionnaire (68.4 vs. 22.4%). Using the 'Clarke' method, but not the 'Gold' method, children with IAH were younger and more likely to require external assistance or hospital admission. Most aged ≥9 yr (98.6%) were able to self-assess awareness status accurately. Puberty and increasing age, augmented symptom scores; duration of diabetes and glycemic control had no effect. In contrast to adults, behavioral symptoms were the best predictors of awareness status. CONCLUSIONS: IAH affects a substantial minority of children and impending hypoglycemia may be heralded by behavioral symptoms. The 'Clarke' method was more effective at identifying those at increased risk and could be used as a screening tool.

Maternal communication style, problem-solving and dietary adherence in young children with type 1 diabetes.

The incidence of type 1 diabetes (T1D) in young children is increasing markedly however young children have been overlooked in paediatric adherence research despite the unique challenges their care presents. We investigated the relation between maternal communication style and adherence to the dietary regimen in 40 children with T1D, aged 2-8 years, and their mothers. Mothers completed measures of children's sugar consumption, parent-child communication quality, and child psychological functioning. Mothers and children engaged in a videotaped problem-solving task related to the dietary regimen, with maternal utterances analysed for behavioural control style (e.g., commands versus suggestions) and cognitive complexity (e.g., provision of labels versus questions). Maternal communications which engaged children, behaviourally and cognitively, in the task were associated with better adherence, medical, communication quality, and child adjustment outcomes. We conclude that adherence and health (medical and psychological) are optimized when young children are given opportunities to participate in their care.

Fear of hypoglycaemia in parents of young children with type 1 diabetes: a systematic review.

BACKGROUND: Many children with type 1 diabetes have poor glycaemic control. Since the Diabetes Control and Complications Trial (DCCT) showed that tighter control reduces complication rates, there has been more emphasis on intensified insulin therapy. We know that patients and families are afraid of hypoglycaemia. We hypothesised that fear of hypoglycaemia might take precedence over concern about long-term complications, and that behaviour to avoid hypoglycaemia might be at the cost of poorer control, and aimed to evaluate the effectiveness of any interventions designed to prevent that. The objective of this review was to systematically review studies concerning the extent and consequences of fear of hypoglycaemia in parents of children under 12 years of age with type 1 diabetes, and interventions to reduce it. DATA SOURCES: MEDLINE, EMBASE, PsycINFO, The Cochrane Library, Web of Science, meeting abstracts of EASD, ADA and Diabetes UK, Current Controlled Trials, ClinicalTrials.gov, UK CRN, scrutiny of bibliographies of retrieved papers and contact with experts in the field.Inclusions: Relevant studies of any design of parents of children under 12 years of age with Type 1 diabetes were included. The key outcomes were the extent and impact of fear, hypoglycaemia avoidance behaviour in parents due to parental fear of hypoglycaemia in their children, the effect on diabetes control, and the impact of interventions to reduce this fear and hypoglycaemia avoidance behaviour. RESULTS: Eight articles from six studies met the inclusion criteria. All were cross sectional studies and most were of good quality. Parental fear of hypoglycaemia, anxiety and depression were reported to be common. There was a paucity of evidence on behaviour to avoid hypoglycaemia, but there were some suggestions that higher than desirable blood glucose levels might be permitted in order to avoid hypoglycaemia. No studies reporting interventions to reduce parental fear of hypoglycaemia were found. CONCLUSIONS: The evidence base was limited. Parents of children with Type 1 diabetes reported considerable parental fear of hypoglycaemia, affecting both parental health and quality of life. There is some suggestion that hypoglycaemia avoidance behaviours by parents might adversely affect glycaemic control. Trials of interventions to reduce parental anxiety and hypoglycaemia avoidance behaviour are needed. We suggest that there should be a trial of structured education for parents of young children with Type 1 diabetes.

Audit of microalbumin excretion in children with type I diabetes.

OBJECTIVE: To investigate prevalence, persistence and clinical correlates of increased microalbumin excretion in random urine samples collected in a paediatric diabetes clinic. METHOD: Random urine samples were collected annually in patients >10 years attending the diabetes clinic in the Royal Hospital for Sick Children, Edinburgh. Albumin excretion is expressed as albumin:creatinine ratio (ACR) and classified as normal (10 mg/mmol), or macroalbuminuria (>47 mg/mmol in females, >35 mg/mmol in males). We analyzed retrospectively results on 421 urine samples collected from 217 patients (109 males), of a median age of 12.3 years (94% 10-16 years) over 3 years. For each sample, the corresponding mean HbA1c over the previous year was calculated. RESULTS: Prevalence of micro- and macro-albuminuria in individual samples was 1% and 0.5% respectively. ACR was equivocal in 10.1% and 4.7% in samples from females and males respectively (p=0.03). HbA1c showed borderline significant differences across ACR groups (p=0.06). Equivocal ACR excretion was associated with slightly higher mean HbA1c (9.5±1.3%) compared to normal albuminuria (9.0±1.1%, p3.5 mg/mmol. The 14-16 years age group patients were most likely to have ACR >3.5 mg/mmol (p=0.05). CONCLUSIONS: Female sex and increasing age, but not HbA1c, were independently associated with increased ACR. A robust mechanism for collection of repeat early morning urine samples from patients with increased ACR in random urine samples, and follow-up of those patients who have persistently high microalbumin excretion are important. It is also important to confirm the usefulness of ACR measurements in random urine samples as a marker of incipent nephropathy.

Reach and impact of a mass media event among vulnerable patients: the Terri Schiavo story.

BACKGROUND: It is unknown whether health-related media stories reach diverse older adults and influence advance care planning (ACP). OBJECTIVE: To determine exposure to media coverage of Terri Schiavo (TS) and its impact on ACP. DESIGN AND PARTICIPANTS: Descriptive study of 117 English/Spanish-speakers, aged >or=50 years (mean 61 years) from a county hospital, interviewed six months after enrollment into an advance directive study. MEASUREMENTS: We assessed whether participants had heard of TS and subject characteristics associated with exposure. We also asked whether, because of TS, subjects engaged in ACP. MAIN RESULTS: Ninety-two percent reported hearing of TS. Participants with adequate literacy were more likely than those with limited literacy to report hearing of TS (100% vs. 79%, P < .001), as were participants with >or= a high school vs. < high school education (97% vs. 82%, P = .004), and English vs. Spanish-speakers (96% vs. 85%, P = .04). Because of TS, many reported clarifying their own goals of care (61%), talking to their family/friends about ACP (66%), and wanting to complete an advance directive (37%). CONCLUSIONS: Most diverse older adults had heard of TS and reported that her story activated them to engage in ACP. Media stories may provide a powerful opportunity to engage patients in ACP and develop public health campaigns.

Hydroxybutyrate near-patient testing to evaluate a new end-point for intravenous insulin therapy in the treatment of diabetic ketoacidosis in children.

BACKGROUND: The aim of this study was to assess the clinical application of a near-patient testing (NPT) device for capillary blood hydroxybutyrate (HOB) measurement in evaluating a new end-point for intravenous insulin therapy in the treatment of diabetic ketoacidosis (DKA) in children. METHODS: Children fulfilling the criteria for DKA were treated according to an integrated care pathway (ICP) with fluid replacement and insulin infusion. We measured capillary HOB hourly by NPT (Abbott Optium meter, analytical range 0-6.0 mmol/L), venous blood gases 4 hourly, and venous HOB 4 hourly by laboratory enzymatic method and tested all urine passed for ketones. Two possible ICP end-points were compared: A, pH > 7.3 followed by two successive NPT HOB measurements <1 mmol/L, and B, pH > 7.3 and urine ketone free (our current end-point). RESULTS: In 35 patient episodes, the ICP was completed (28 to negative ketonuria) without significant variation. Before treatment, median (range) laboratory HOB was 9.5 mmol/L (4.6-15.70 mmol/L), pH 7.18 (6.98-7.38), and standard bicarbonate 11.5 mmol/L (4.3-18.6 mmol/L). ICP end-point A was reached after 17 h (4-39 h), whereas end-point B was not reached until 28 h (14-64 h) after starting treatment. The median lag was 11 h (1-36 h). For 59 paired venous samples (excluding samples with laboratory HOB >6 mmol/L), the relation between NPT (y) and laboratory (x) HOB was y = 0.92x - 0.05, r(2)= 0.94, mean bias -0.25 mmol/L. CONCLUSIONS: (i) Serial measurement of NPT HOB allows evaluation of a new, simple, earlier end-point for intravenous insulin therapy. (ii) Agreement between NPT and laboratory HOB was clinically acceptable for HOB levels within the meter's analytical range.

Predictors of treatment adherence in young children with type 1 diabetes.

AIM: This paper reports a study to investigate whether diabetes-specific, demographic and psychosocial variables predict adherence in young children with type 1 diabetes. BACKGROUND: Paediatric diabetes rates are increasing worldwide; however, young children are neglected in treatment adherence research, despite the importance of adherence for health. Greater understanding of adherence in this group could enhance nurses' ability to provide care tailored to families' needs. METHOD: A cross-sectional study was carried out between 2001 and 2003 with 65 children aged 2-8 years and their mothers in Britain. Mothers were interviewed about children's diabetes care, nutritional analyses were conducted and mothers completed assessments of diabetes knowledge, parenting stress, family functioning and child psychological adjustment. Demographic and medical information was collected from patient records. FINDINGS: Consistent with older populations, blood glucose monitoring and dietary regimens showed greater adherence variability than injection frequency and injection time consistency. Better maternal diabetes knowledge correlated with less injection time variability, more frequent blood glucose monitoring, lower percentage energy intake from extrinsic sugars, lower glycosylated haemoglobin levels and fewer relationship difficulties. Longer diabetes duration, greater injection time variability and higher percentage energy intake from extrinsic sugars predicted less frequent blood glucose monitoring. More relationship difficulties and less frequent blood glucose monitoring predicted higher percentage energy intake from extrinsic sugars. CONCLUSIONS: Nurses can facilitate treatment adherence through provision of educational, practical and socio-emotional support. Nursing interventions should target blood glucose monitoring and dietary regimens in particular, and nurses should be sensitive to the various caretaking challenges presented to parents by different components of the diabetes regimen.

Relapsing diabetes can result from moderately activating mutations in KCNJ11.

Neonatal diabetes can either remit and hence be transient or else may be permanent. These two phenotypes were considered to be genetically distinct. Abnormalities of 6q24 are the commonest cause of transient neonatal diabetes (TNDM). Mutations in KCNJ11, which encodes Kir6.2, the pore-forming subunit of the ATP-sensitive potassium channel (K(ATP)), are the commonest cause of permanent neonatal diabetes (PNDM). In addition to diabetes, some KCNJ11 mutations also result in marked developmental delay and epilepsy. These mutations are more severe on functional characterization. We investigated whether mutations in KCNJ11 could also give rise to TNDM. We identified the three novel heterozygous mutations (G53S, G53R, I182V) in three of 11 probands with clinically defined TNDM, who did not have chromosome 6q24 abnormalities. The mutations co-segregated with diabetes within families and were not found in 100 controls. All probands had insulin-treated diabetes diagnosed in the first 4 months and went into remission by 7-14 months. Functional characterization of the TNDM associated mutations was performed by expressing the mutated Kir6.2 with SUR1 in Xenopus laevis oocytes. All three heterozygous mutations resulted in a reduction in the sensitivity to ATP when compared with wild-type (IC(50) approximately 30 versus approximately 7 microM, P-value for is all <0.01); however, this was less profoundly reduced than with the PNDM associated mutations. In conclusion, mutations in KCNJ11 are the first genetic cause for remitting as well as permanent diabetes. This suggests that a fixed ion channel abnormality can result in a fluctuating glycaemic phenotype. The multiple phenotypes associated with activating KCNJ11 mutations may reflect their severity in vitro.