Journal of Medical Internet Research - International Scientific Journal for Medical Research, Information and Communication on the Internet

Purpose: The diagnosis of diabetes in pre-school children poses a number of unique challenges related to everyday responsibility, and the continuous need for supervision and caregiving. This may affect both the child’s and the parents’ perceived burden caused by the condition. The aim of the study was to explore the lived experience of being mothers and fathers of a child with type 1 diabetes aged 1 to 7 years. Methods: The study is rooted in an interpretive phenomenological methodology as described by van Manen. In-depth interviews were carried out to collect data. Findings. We were able to identify one essential theme across the interviews: Striving to live an ordinary family life, yet feeling and living very differently—with interrelated sub-themes: A life-changing situation, Always on guard, and Struggling to let go. Conclusion: Parents described a profoundly changed situation, and they were indeed striving to live like a “normal” family. They were in need of support from health care professionals at the outpatient clinic, not only support and supervision in regard to practical tasks, but also concerning handling a changed life situation and emotional reactions, especially in the first year after diagnosis.

Objective: To pilot test the proposed DiaPROM trial components and address uncertainties associated with conducting a full-scale randomised controlled trial (RCT) to evaluate whether such a trial is feasible. Design: Two-arm pilot RCT. Participants: Adults aged ≥18–39 years, with minimum 1 year type 1 diabetes duration, attending outpatient follow-up. Exclusion criteria were pregnancy, severe cognitive, somatic or psychiatric conditions and impaired vision. Randomisation and intervention: All participants completed electronic Patient-Reported Outcome Measures (PROMs) prior to the annual diabetes consultation. Using computer-generated block-randomisation without blinding, we assigned participants in a 1:1 ratio stratified by sex to receive standard care or an intervention. Physicians reviewed diabetes distress scores ( Problem Areas In Diabetes scale ) and referred individuals with scores ≥30 or single item(s) ≥3 to minimum two diabetes nurse consultations where reported problems were reviewed and discussed. Outcomes: Recruitment and retention rates; participants perceptions about intervention components. Variance and estimated between-group differences in follow-up scores ( Diabetes Distress Scale (DDS), WHO 5-Well-being Index , Perceived Competence for Diabetes Scale and glycaemic control ) and DDS correlation with baseline scores, to assist sample size calculations. Results: We randomised 80 participants to the control or intervention arm (one participant was later excluded). 23/39 intervention arm participants qualified for additional consultations and 17 attended. 67/79 attended the 12-month follow-up (15.2% attrition); 5/17 referred to additional consultations were lost to follow-up (29.4% attrition). Participants reported PROMs as relevant (84.6%) and acceptable (97.4%) but rated the usefulness of consultations as moderate to low. Baseline mean±SD DDS score was 2.1±0.69; DDS SD was 0.71 (95% CI: 0.60 to 0.86) at follow-up; correlation between baseline and follow-up DDS scores was 0.8 (95% CI: 0.7 to 0.9). Conclusions: The pilot trial revealed need for intervention modifications ahead of a full-scale trial to evaluate use of PROMs in diabetes consultations. Specifically, participant acceptability and intervention implementation need further investigation.

Living with type 1 diabetes (T1D) is demanding, and emotional problems may impair ability for diabetes self-management. Thus, diabetes guidelines recommend regular assessment of such problems. Using patient-reported outcome measures (PROMs) to assess diabetes-related distress and psychological well-being is considered useful. It has been proposed that future work should examine the use of PROMs to support the care of individual patients and improve the quality of health services. To our knowledge, the use of PROMs has not been systematically evaluated in diabetes care services in Norway. Electronically captured PROMs can be directly incorporated into electronic patient records. Thus, the study’s overall aim was to examine the feasibility and acceptability of capturing PROMs electronically on a touchscreen computer in clinical diabetes practice. Adults with T1D age ≥ 40 years completed PROMs on a touchscreen computer at Haukeland University Hospital’s diabetes outpatient clinic. We included 46 items related to diabetes-related distress, self-perceived diabetes competence, awareness of hypoglycaemia, occurrence of hyperglycaemia, hypoglycaemia and fluctuating glucose levels, routines for glucose monitoring, general well-being and health-related quality of life. Participants subsequently completed a paper-based questionnaire regarding comprehension and relevance of the PROMs, acceptance of the number of items and willingness to complete electronic PROMs annually. We wrote field notes in the outpatient clinic based on observations and comments from the invited participants. During spring 2017, 69 participants (50.7% men), age 40 to 74 years, were recruited. Generally, the touchscreen computer functioned well technically. Median time spent completing the PROMs was 8 min 19 s. Twenty-nine (42.0%) participants completed the PROMs without missing items, with an 81.4% average instrument completion rate. Participants reported that the PROMs were comprehensible (n = 62) and relevant (n = 46) to a large or very large degree, with an acceptable number of items (n = 51). Moreover, 54 were willing to complete PROMs annually. Participants commented that the focus on living with diabetes was valued. Capturing PROMs on a touchscreen computer in an outpatient clinic was technically and practically feasible. The participants found the PROMs to be relevant and acceptable with a manageable number of items, and reported willingness to complete PROMs annually.

Due to the high morbidity and disability level among diabetes patients in nursing homes, the conditions for caregivers are exceedingly complex and challenging. The patient safety culture in nursing homes should be evaluated in order to improve patient safety and the quality of care. Thus, the aim of this study was to examine the perceptions of patient safety culture of nursing personnel in nursing homes, and its associations with the participants’ (i) profession, (ii) education, (iii) specific knowledge related to their own residents with diabetes, and (iv) familiarity with clinical diabetes guidelines for older people. Cross-sectional survey design. The study included 89 nursing home personnel (38 registered nurses and 51 nurse aides), 25 (28%) with advanced education, at two nursing homes. We collected self-reported questionnaire data on age, profession, education and work experience, diabetes knowledge and familiarity with diabetes guidelines. In addition, we applied the Nursing Home Survey on Patient Safety Culture instrument, with 42 items and 12 dimensions. In general, those with advanced education scored higher in all patient safety culture dimensions than those without, however statistically significant only for the dimensions “teamwork” (mean score 81.7 and 67.7, p = 0.042) and “overall perceptions of resident safety” (mean score 90.0 and 74.3, p = 0.016). Nursing personnel who were familiar with diabetes guidelines for older people had more positive perceptions in key areas of patient safety culture, than those without familiarity with the guidelines. The findings from this study show that advanced education and familiarity with current diabetes guidelines was related to adequate evaluations on essential areas of patient safety culture in nursing homes.