Dataset Information

A phenomenological-hermeneutic study exploring caring responsibility for a chronically ill, older parent with frailty.

ABSTRACT: Aim:To provide lifeworld insights into experiences of adult children with caring responsibility for an 80+-year-old chronically ill parent with frailty. Background:Informal care is common in Nordic welfare countries; however, little is known about adult children's experience of caring responsibility in this setting. Design:A phenomenological-hermeneutic study based on Reflective Lifeworld Research. Methods:Diaries and semi-structured interviews with 12 adult children. Results:Caring responsibility is identified as "a condition of life, filled with uncertainty." Three constituents contribute to this phenomenon: (a) balancing love, duty and reciprocity; (b) being the parent's advocate and manager; and (c) experiencing concerns and bodily strain. Conclusion:Adult children work hard to provide care and enhance the well-being of their parent. Heidegger's concept 'Fürsorge' may help us understand how by showing how caring responsibility means balancing different roles vis-à-vis the parent, one's own life and the health and social systems. Caring responsibility changes the relationship between parent and child.

SUBMITTER: Andersen HE

PROVIDER: S-EPMC7308672 | biostudies-literature | 2020 Jul

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

A phenomenological-hermeneutic study exploring caring responsibility for a chronically ill, older parent with frailty.

Andersen Helle Elisabeth HE Hoeck Bente B Nielsen Dorthe Susanne DS Ryg Jesper J Delmar Charlotte C

Nursing open 20200305 4

<h4>Aim</h4>To provide lifeworld insights into experiences of adult children with caring responsibility for an 80+-year-old chronically ill parent with frailty.<h4>Background</h4>Informal care is common in Nordic welfare countries; however, little is known about adult children's experience of caring responsibility in this setting.<h4>Design</h4>A phenomenological-hermeneutic study based on Reflective Lifeworld Research.<h4>Methods</h4>Diaries and semi-structured interviews with 12 adult children ...[more]

PMID: 32587713

Similar Datasets

Project description:BackgroundDiscrepancy between self-reports and parent-proxy reports of adolescent health-related quality of life (HRQoL) has been repeatedly acknowledged in the literature as the proxy problem. However, little is known about the extent and direction of this discrepancy. The purpose of this study is to explore to what extent and in what direction HRQoL self-reports of adolescents with chronic conditions and those of their parents differ.MethodsA cross-sectional survey was conducted among adolescents suffering from chronic conditions and their parents. Socio-demographic and disease-related characteristics were collected and information about consequences of the chronic condition was assessed. HRQoL was measured with KIDSCREEN-10 and DISABKIDS condition generic measure (DCGM-10). Agreement was analysed through defining a threshold of agreement based on half of the standard deviation of the HRQoL score with the highest variance. Agreement occurred if the difference between adolescent and parent scores was less than or equal to half of the standard deviation. Intra-class correlation coefficients and Bland-Altman plots were also computed. The characteristics associated with direction of disagreement were statistically tested with one-way ANOVA and Chi-square tests.Results584 paired HRQoL scores were obtained. Ratings from both adolescents and parents were high, compared to European norm data. Differences between adolescents and parents were statistically significant, yet relatively small. Disagreement existed in both directions: in 24.5% (KIDSCREEN-10) and 16.8% (DCGM-10) of the cases adolescents rated their HRQoL lower than did their parent, while in 32.2% (KIDSCREEN-10) and 31.7% (DCGM-10) of the cases the opposite was true. Adolescent's age, educational level and type of education, parent's educational level, number of hospital admissions and several other disease-related factors influenced direction of disagreement.ConclusionsIn a reasonable proportion of cases the adolescent and parent agreed on the adolescent's HRQoL (43-51% of the cases) and most disagreement tended to be minor. Thus, the proxy problem may be smaller than presented in the literature and its extent may differ per population. As adolescents are expected to become partners in their own health care, it is recommended to focus on adolescents' own perceptions of HRQoL.

Project description:BackgroundFrailty status among critically ill patients with acute kidney injury (AKI) is not well described despite its importance for prognostication and informed decision-making on life-sustaining therapies. In this study, we aim to describe the epidemiology of frailty in a cohort of older critically ill patients with severe AKI, the outcomes of patients with pre-existing frailty before AKI and the factors associated with a worsening frailty status among survivors.MethodsThis was a secondary analysis of a prospective multicentre observational study that enrolled older (age > 65 years) critically ill patients with AKI. The clinical frailty scale (CFS) score was captured at baseline, at 6 months and at 12 months among survivors. Frailty was defined as a CFS score of ≥ 5. Demographic, clinical and physiological variables associated with frailty as baseline were described. Multivariable Cox proportional hazard models were constructed to describe the association between frailty and 90-day mortality. Demographic and clinical factors associated with worsening frailty status at 6 months and 12 months were described using multivariable logistic regression analysis and multistate models.ResultsAmong the 462 patients in our cohort, median (IQR) baseline CFS score was 4 (3-5), with 141 (31%) patients considered frail. Pre-existing frailty was associated with greater hazard of 90-day mortality (59% (n = 83) for frail vs. 31% (n = 100) for non-frail; adjusted hazards ratio [HR] 1.49; 95% CI 1.11-2.01, p = 0.008). At 6 months, 68 patients (28% of survivors) were frail. Of these, 57% (n = 39) were not classified as frail at baseline. Between 6 and 12 months of follow-up, 9 (4% of survivors) patients transitioned from a frail to a not frail status while 10 (4% of survivors) patients became frail and 11 (5% of survivors) patients died. In multivariable analysis, age was independently associated with worsening CFS score from baseline to 6 months (adjusted odds ratio [OR] 1.08; 95% CI 1.03-1.13, p = 0.003).ConclusionsPre-existing frailty is an independent risk factor for mortality among older critically ill patients with severe AKI. A substantial proportion of survivors experience declining function and worsened frailty status within one year.

Project description:Gut microbiome in critically ill patients shows profound dysbiosis. The most vulnerable is the subgroup of chronically critically ill (CCI) patients - those suffering from long-term dependence on support systems in intensive care units. It is important to investigate their microbiome as a potential reservoir of opportunistic taxa causing co-infections and a morbidity factor. We explored dynamics of microbiome composition in the CCI patients by combining "shotgun" metagenomics with chromosome conformation capture (Hi-C). Stool samples were collected at 2 time points from 2 patients with severe brain injury with different outcomes within a 1-2-week interval. The metagenome-assembled genomes (MAGs) were reconstructed based on the Hi-C data using a novel hicSPAdes method (along with the bin3c method for comparison), as well as independently of the Hi-C using MetaBAT2. The resistomes of the samples were derived using a novel assembly graph-based approach. Links of bacteria to antibiotic resistance genes, plasmids and viruses were analyzed using Hi-C-based networks. The gut community structure was enriched in opportunistic microorganisms. The binning using hicSPAdes was superior to the conventional WGS-based binning as well as to the bin3c in terms of the number, completeness and contamination of the reconstructed MAGs. Using Klebsiella pneumoniae as an example, we showed how chromosome conformation capture can aid comparative genomic analysis of clinically important pathogens. Diverse associations of resistome with antimicrobial therapy from the level of assembly graphs to gene content were discovered. Analysis of Hi-C networks suggested multiple "host-plasmid" and "host-phage" links. Hi-C metagenomics is a promising technique for investigating clinical microbiome samples. It provides a community composition profile with increased details on bacterial gene content and mobile genetic elements compared to conventional metagenomics. The ability of Hi-C binning to encompass the MAG's plasmid content facilitates metagenomic evaluation of virulence and drug resistance dynamics in clinically relevant opportunistic pathogens. These findings will help to identify the targets for developing cost-effective and rapid tests for assessing microbiome-related health risks.

Dataset Information

A phenomenological-hermeneutic study exploring caring responsibility for a chronically ill, older parent with frailty.

Publications

A phenomenological-hermeneutic study exploring caring responsibility for a chronically ill, older parent with frailty.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets