The lived experiences of young people (13-16 years) with Type 1 diabetes mellitus and their parents--a qualitative phenomenological study.

AIMS: Within a programme of research aiming to develop a technology-based educational intervention for young people with Type 1 diabetes, this study aimed to explore adolescents' and parents' experiences of living with Type 1 diabetes from an interpretive phenomenological perspective. METHODS: In-depth interviews were conducted with 20 adolescents with Type 1 diabetes from a diabetes clinic in North West England, and 27 of their parents. RESULTS: Living with Type 1 diabetes in adolescence was characterized by three distinct stages: (1) adapting to the diagnosis; (2) learning to live with Type 1 diabetes; (3) becoming independent. Experiential learning was key to adolescents developing self-management skills and independence. Parents and health professionals were instrumental in facilitating environments that gave adolescents the freedom to learn through trial and error. They also provided the support, feedback and discussion necessary to facilitate such learning. CONCLUSIONS: For adolescents to become independent in Type 1 diabetes self-management, they must develop capability through experiential learning. It is important that parents and health professionals understand the important role they play in this process and have the skills to support adolescents in this way. Data from this study have been used to develop an online interactive 'Adolescent Diabetes Needs Assessment Tool', which assesses individual learning and support needs to aid the process of feedback and discussion.

Patients' perspectives on diabetes health care education.

Living with Type 2 diabetes requires that patients develop a range of competencies that allow them to take greater control over the treatment of their disease. This requires education that promotes health whilst respecting individuals' self-perceived needs and voluntary choices. Whilst such a concept is not new in the field of diabetes, health professionals are still struggling with how to administer it successfully. This paper presents the findings of a research trial of a theoretically constructed educational intervention. It focuses on the patients' perspectives of what they valued about the intervention which was found to be clinically effective over a short-term period only. Limitations to maintaining effects were associated with a number of factors. The study found that whilst patients can be educated toward greater autonomy, not all health professionals are ready to work in partnership with them. It highlighted the importance of clinical staff not only gaining a better understanding of diabetes management, but also of the theoretical principles underlying patient empowerment. This paper outlines these principles and shows how they were synthesized to produce a framework for informing practice. Patients' views are utilized to provide guidelines for improving the outcomes of patient education.

Off-label use of recombinant factor VIIa in patients following bone marrow transplantation.

Recombinant factor VIIa (rFVIIa, NovoSeven) is FDA-approved for the treatment of bleeding in patients with hemophilia A/B with inhibitors. A growing literature suggests that there may be expanded indications for the use of NovoSeven in patients with significant bleeding who do not have a known factor deficiency. Severe bleeding refractory to standard hematologic or hemostatic support is common in patients undergoing bone marrow transplantation (BMT). We review our experience with rFVIIa in three patients (8 years 8 months to 19 years, median 13 years) treated for pulmonary hemorrhage (n = 1), hemorrhagic cystitis (n = 3), and gastrointestinal bleeding (n = 2). Boluses of 90-270 microg/kg rVIIa with subsequent doses of 90 microg/kg every 4-24 h for 3-14 days were given, concurrent with maintaining platelet counts >50,000/mm(3). Transient clinical responses in gross hematuria (two patients) and in pulmonary hemorrhage were noted within several days of starting rFVIIa, but bleeding in a new site in two patients and renewed bleeding of the initial site in the third resulted in discontinuation of the drug. No toxicity or adverse events were observed while the patients were on rFVIIa treatment. Because of the substantial cost of this product, the lack of adequate monitoring methodology, and the variability of current dose and dosing intervals, large randomized studies are needed before definitive off-label use in the setting of BMT can be recommended.

The bone anchored hearing aid--the third option for otosclerosis.

The bone anchored hearing aid (BAHA) has mainly been used for the treatment of hearing loss in patients with congenital conductive problems or chronic suppurative otitis media. In a five-year period, 32 otosclerotic patients have been referred to the Queen Elizabeth Hospital for consideration of a BAHA. Ten of these patients have been fitted and gained benefit compared to their previous hearing aid. The benefits are not necessarily those in hearing ability but in some cases relate to cosmetic or comfort improvements. This paper demonstrates that the BAHA offers a third treatment option for otosclerosis in patients who cannot or will not undergo stapedectomy and experience difficulty with conventional hearing aids.