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BACKGROUND: Ageing in place is a common desire among older adults and people in need of care. Accessible housing and ambient assisted living (AAL) technologies can help to live independently at home. However, they cannot replace the human support network of informal caregivers, healthcare professionals and social workers. The needs of these stakeholders should be considered and analysed in order to develop user-friendly and acceptable (digital) solutions for ageing in place while supporting human support networks in fulfilling their roles. This paper presents the first step for a comprehensive multi-level needs analysis within the framework of an user-centered design thinking approach. METHODS: Guideline-based interviews were conducted with healthcare professionals, social workers and an informal caregiver to collect data about the needs of older adults as well as people in need of care, and their human support networks. RESULTS: The call for more information that is easier to find is a common desire of the three groups. There is agreement on system-based communication and orientation problems, the existence of physical and psychological stress exacerbated by a lack of human resources, the desire for personalised care, the need to feel safe and supported in emergencies, and the need for advice and help with administrative tasks. Overall, the needs of one group are closely linked to those of the other. CONCLUSION: Stakeholder selection and diversity are decisive for findings about ageing in place. The overlaps between the stakeholders' needs offer chances and challenges at the same time for the development of user-friendly, acceptable (digital) solutions and products that support ageing in place.
Assuntos
Envelhecimento , Vida Independente , Humanos , Idoso , Avaliação das Necessidades , Cuidadores/psicologia , Pesquisa QualitativaRESUMO
PURPOSE: This scoping review aims to provide an overview of previously published treatment strategies that are multimodal, rather than purely drug-based and may be considered for home- or bedbound ME/CFS patients. Thus, the focus lies upon the analyses of telemedicine as well as home treatment elements. In addition, the evaluation and assessment methods used in these studies will be further discussed. METHODS: Using the scoping review method, a literature analysis was conducted resulting in a total of 14 publications which met the predefined criteria. Inclusion was based on models applicable to housebound individuals with ME/CFS, focusing on social medicine and psychological support services rather than individual drug strategies. RESULTS: The analysis demonstrated that the appropriate treatment methods were predominantly home visits (n=5) or a telemedicine format (n=7). Studies which used alternative settings were included if conversion to a telemedicine format was viable. The important factors highlighted in several studies (n=8), when considering this patient group, were individualisation and flexibility of the treatment methods, and thus the ability to address the day-to-day levels of impairment. The explicit involvement of families in the treatment plan were described in a total of six studies. In ten articles, the treatment concept was additionally evaluated, predominantly using questionnaires (n=7), whilst the questionnaires used were not consistent. Qualitative evaluations were invariably conducted using Brown and Clarke's thematic analysis (n=3). CONCLUSION: Publications on multimodal treatment strategies for homebound ME/CFS patients are rare. However approaches using home visits or telemedicine are described. The majority of identified publications addressed the need for individualised as well as flexible patient care, whilst some were dedicated to the added value of involving the patients' family. The data outline the specific challenges associated with the care of severely affected ME/CFS patients that should also be considered in the context of research.
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AIM: We evaluated the effects of a family-centred clinical care pathway and case management programme on short-term clinical outcome in a cohort of very low-birth weight (VLBW) infants. METHODS: The programme, named NeoPAss, was developed at the Department of Neonatology Children's hospital Passau in 2013. Short-term outcomes of infants were compared to matched controls from the Bavarian neonatology surveillance database before (n = 111; 2008-2012) and after implementation (n = 170; 2014-2017). RESULTS: After implementation the rate of late-onset sepsis was significantly lower (2.5% vs. 10.7%, p = 0.005) and the length of stay was significantly shorter (VLBW 28 to 31 weeks' gestational age (GA) 47.5 vs. 53.1 days, p = 0.047; <28 weeks' GA 79.4 vs. 91.9 days, p = 0.007) in the intervention group compared to controls. Infants were discharged with significantly lower weight (mean 2351 vs. 2539 g, p = 0.013). There was no statistically significant difference in the rate of intraventricular haemorrhage (3.7% vs. 8.2%), necrotizing enterocolitis (0.6% vs. 1.9%) and bronchopulmonary dysplasia (0% vs. 6.9%). CONCLUSION: Our data confirm that of other studies demonstrating a beneficial effect of family-centred care programmes and provides evidence that structured parental involvement is not associated with increased risk of infection in a VLBW cohort.
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Background: Infectious mononucleosis after primary infection with Epstein-Barr virus (EBV-IM) has been linked to the development of myalgic encephalomyelitis/chronic fatigue-syndrome (ME/CFS) in children, adolescents, and young adults. Here, we present clinical phenotypes and follow-up data from a first German cohort of young people with ME/CFS following EBV-IM. Methods: 12 adolescents and 13 young adults were diagnosed with IM-triggered ME/CFS at our specialized tertiary outpatient service by clinical criteria requiring post-exertional malaise (PEM) and a history of confirmed EBV primary infection as triggering event. Demographic information, laboratory findings, frequency and severity of symptoms, physical functioning, and health-related quality of life (HRQoL) were assessed and re-evaluated 6 and 12 months later. Results: Young adults displayed more severe symptoms as well as worsening of fatigue, physical and mental functioning, and HRQoL throughout the study, compared to adolescents. After one year, 6/12 (54%) adolescents no longer met the diagnostic criteria for ME/CFS while all young adults continued to fulfill the Canadian consensus criteria. Improvement in adolescents was evident in physical functioning, symptom frequency and severity, and HRQoL, while young adults showed little improvement. EBV serology and EBV DNA load did not correlate with distinct clinical features of ME/CFS, and clinical chemistry showed no evidence of inflammation. Remarkably, the median time from symptom onset to ME/CFS diagnosis was 13.8 (IQR: 9.1-34.9) months. Conclusions: ME/CFS following EBV-IM is a severely debilitating disease often diagnosed late and with limited responses to conventional medical care, especially in adults. Although adolescents may have a better prognosis, their condition can fluctuate and significantly impact their HRQoL. Our data emphasize that biomarkers and effective therapeutic options are also urgently needed to improve medical care and pave the way to recovery.