This study provides an in-depth understanding of the perceptions of patients with T2DM before use (acceptability) and after use (acceptance) regarding 4 different mobile health apps for diabetes control and self-management. This study was part of the TOPFIT Citizenlab project. TOPFIT Citizenlab is a 3-year research and innovation program in the eastern part of the Netherlands. Citizens, health care professionals (HCPs), and companies have joined forces with researchers to develop and implement technology for health and well-being.
MULTIFILE
Background: Persons with an intellectual disability are at a higher risk of experiencing adversities. The concept of resilience offers promising insights into facilitating personal growth after adversity. The current study aims at providing an overview of the current research on resilience and the way this can contribute to quality of life in people with intellectual disability. Method: A literature review was conducted in the databases PsycINFO and Web of Science. To evaluate the quality of the studies, the Mixed Method Appraisal Tool (MMAT) was used. Results: The themes, autonomy, self-acceptance and physical health, were identified as internal sources of resilience. External sources of resilience can be found within the social network and daily activities. Conclusion: The current overview shows promising results to address resilience in adults with intellectual disability. More research is needed to identify the full range of resiliency factors.
Introduction: Throughout life, a patient with severe haemophilia is confronted with many treatment-related challenges. Insight into self-management and non-adherence could improve the quality of care for these patients. The aim of this study was to provide an overview of the current evidence on self-management and adherence to prophylaxis in haemophilia. Method: Based on series of studies and published literature, aspects of treatment were explored: learning and performing self-infusion, achieving self-management skills in adolescence, adherence issues and coping with haemophilia. Evidence-based and age-group-specific recommendations for haemophilia professionals were formulated. Results: Nearly, all severe haemophilia patients and parents were able to perform self-infusion and the quality level of infusion skills was acceptable. Learning self-infusion was generally initiated before the onset of puberty and full self-management was obtained 10 years later. Adherence was defined using a Delphi consensus procedure and was determined by skipping, dosing and timing of infusions. Adherence levels varied according to age, with highest levels in children (1–12 years) and the lowest among 25–40 years. Adherence to prophylaxis was acceptable (43%), yet 57% of the population struggled with prophylaxis. Qualitative research showed that the position of prophylaxis in life is the main driver of adherence. This position is influenced by acceptance and self-management skills. Regarding coping with haemophilia, the majority of patients used a problem-focused approach. Conclusion: Self-management and adherence to prophylaxis vary during the life span. Acceptance of the disease and self-management skills were important aspects that may require tailored professional support.
