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- Johansson, Helena, 1980-, et al.
(författare)
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The experience of caregiver burden when being next of kin to a person with severe chronic obstructive pulmonary disease : A qualitative study
- 2023
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Ingår i: Chronic Respiratory Disease. - : Sage Publications. - 1479-9723 .- 1479-9731. ; 20
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Chronic obstructive pulmonary disease (COPD) is an inflammatory and irreversible lung disease. For next of kin caregiver burden can be a consequence of the situation of being close to a person affected by a chronic disease and in need of help. When there is an imbalance between stressors and resources to cope with the situation, caregiver burden emerges. Knowledge is sparse about how the caregiver burden is experienced by the next of kin. Therefore, the aim of this study is to identify and describe the caregiver burden experienced by next of kin of persons with severe COPD.METHOD: Qualitative interviews with 21 next of kin were conducted. Thematic analysis was used in accordance with the six steps of Braun and Clarke.RESULTS: The next of kin experience caregiver burden as 1) changed roles in daily life 2) putting life on hold 3) to stand aside. The next of kin are in need of support to manage daily life.CONCLUSIONS: The caregiver burden affect the next of kin physically and emotionally. To prevent advance consequences, person-centered care can be used to support the next of kin in the situation.
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| 2. |
- Bastard, Paul, et al.
(författare)
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Preexisting autoantibodies to type I IFNs underlie critical COVID-19 pneumonia in patients with APS-1.
- 2021
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Ingår i: The Journal of experimental medicine. - 1540-9538. ; 218:7
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Tidskriftsartikel (refereegranskat)abstract
- Patients with biallelic loss-of-function variants of AIRE suffer from autoimmune polyendocrine syndrome type-1 (APS-1) and produce a broad range of autoantibodies (auto-Abs), including circulating auto-Abs neutralizing most type I interferons (IFNs). These auto-Abs were recently reported to account for at least 10% of cases of life-threatening COVID-19 pneumonia in the general population. We report 22 APS-1 patients from 21 kindreds in seven countries, aged between 8 and 48 yr and infected with SARS-CoV-2 since February 2020. The 21 patients tested had auto-Abs neutralizing IFN-α subtypes and/or IFN-ω; one had anti-IFN-β and another anti-IFN-ε, but none had anti-IFN-κ. Strikingly, 19 patients (86%) were hospitalized for COVID-19 pneumonia, including 15 (68%) admitted to an intensive care unit, 11 (50%) who required mechanical ventilation, and four (18%) who died. Ambulatory disease in three patients (14%) was possibly accounted for by prior or early specific interventions. Preexisting auto-Abs neutralizing type I IFNs in APS-1 patients confer a very high risk of life-threatening COVID-19 pneumonia at any age.
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| 3. |
- Poli, Arianna, 1987-, et al.
(författare)
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Old-age diversity is underrepresented in digital health research : findings from the evaluation of a mobile phone system for post-operative progress monitoring in Sweden
- 2023
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Ingår i: Ageing & Society. - : Cambridge University Press. - 0144-686X .- 1469-1779. ; 43:10, s. 2264-2286
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Tidskriftsartikel (refereegranskat)abstract
- Much research is conducted to evaluate digital-based solutions for health-care services, but little is known about how such evaluations acknowledge diversity in later life. This study helps fill this gap and analyses participation in the evaluation of a web-based mobile phone system for monitoring the post-operative progress of patients after day surgery. Participation is conceptualised as resulting from three processes: pre-screening, recruitment and self-selection. Based on field information and survey data, this study models (a) the (non-)participation in a sample of 498 individuals aged 60 and older that includes non-screened, non-recruited, decliners and participants in the evaluation, and (b) the individual decision to participate in a sample of 210 individuals aged 60 and older who were invited to take part in the evaluation. Increasing age enhances the likelihood of not being screened, not being recruited or declining the invitation. Those not recruited were most often ineligible because of technology-related barriers. Decliners and participants differed by age, gender, job, health status, digital skills, but not by social participation. Results suggest that highly specific groups of older people are more likely to be involved than others. Old-age diversity is not properly represented in digital health research, with implications for the inclusivity of new digital health technologies. This has implications for increased risks of old-age exclusion and exacerbation of social and digital inequalities in ageing societies.
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| 4. |
- Poli, Arianna, 1987-, et al.
(författare)
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(Un)willingness to Participate in Digital Health Research and Self-Ageism
- 2021
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Konferensbidrag (refereegranskat)abstract
- Much research is conducted for evaluating digital-based solutions for healthcare among older people. However, some older people are less likely to be involved than others. We present an analysis of participation in the evaluation of a mobile-based system for monitoring post-operative progress after a day surgery in Sweden. We explore key factors associated with the unwillingness to participate and discuss the possible role of self-ageism in determining the decision not to participate. Based on field information and survey data, we compared participants and non-participants in a sample of 368 individuals aged 60 and older and modelled the individual decision to participate (or not) in the evaluation. Decliners and those who were willing to participate differ along the lines of (chronological) age, gender, job, health status, and digital skills. Age remains a significant factor explaining individual decision to participate even when controlling for other variables. Overall results indicate that very specific groups of older people are more likely to participate than others in digital health research. Age plays a major role in the decision to participate or not. Negative self-perception of being old with respect to digital health research could contribute to explaining the individual unwillingness to participate.
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