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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

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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

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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: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:Improving the health of chronically ill older adults is a major challenge facing modern health care systems. A community-based nursing intervention developed by Health Quality Partners (HQP) was one of 15 different models of care coordination tested in randomized controlled trials within the Medicare Coordinated Care Demonstration (MCCD), a national US study. Evaluation of the HQP program began in 2002. The study reported here was designed to evaluate the survival impact of the HQP program versus usual care up to five years post-enrollment.HQP enrolled 1,736 adults aged 65 and over, with one or more eligible chronic conditions (coronary artery disease, heart failure, diabetes, asthma, hypertension, or hyperlipidemia) during the first six years of the study. The intervention group (n = 873) was offered a comprehensive, integrated, and tightly managed system of care coordination, disease management, and preventive services provided by community-based nurse care managers working collaboratively with primary care providers. The control group (n = 863) received usual care. Overall, a 25% lower relative risk of death (hazard ratio [HR] 0.75 [95% CI 0.57-1.00], p = 0.047) was observed among intervention participants with 86 (9.9%) deaths in the intervention group and 111 (12.9%) deaths in the control group during a mean follow-up of 4.2 years. When covariates for sex, age group, primary diagnosis, perceived health, number of medications taken, hospital stays in the past 6 months, and tobacco use were included, the adjusted HR was 0.73 (95% CI 0.55-0.98, p = 0.033). Subgroup analyses did not demonstrate statistically significant interaction effects for any subgroup. No suspected program-related adverse events were identified.The HQP model of community-based nurse care management appeared to reduce all-cause mortality in chronically ill older adults. Limitations of the study are that few low-income and non-white individuals were enrolled and implementation was in a single geographic region of the US. Additional research to confirm these findings and determine the model's scalability and generalizability is warranted.ClinicalTrials.gov NCT01071967. Please see later in the article for the Editors' Summary.

Project description:BACKGROUND:Health behaviours (physical activity, maintenance of a healthy diet and not smoking) are known to be beneficial to the health and well-being of chronically ill people. With China's ageing population and increased prevalence of people with chronic diseases, the improvement of unhealthy behaviours in this population has become crucial. Although recent studies have highlighted the importance of social participation for health and quality of life (QoL) among older people, no study to date has included social participation along with more traditional health behaviours. Therefore, this study aimed to identify associations of multiple health behaviours (social participation, physical activity, maintenance of a healthy diet and not smoking) with health and QoL outcomes (including cognitive and physical function) among chronically ill older adults in China. METHODS:For this nationally representative cross-sectional study, wave 1 data from the World Health Organization's Study on global AGEing and adult health (China) were examined. In total, 6629 community-dwelling older adults (mean age, 64.9?years) with at least one chronic disease were included. Multivariate linear regression analyses were used to evaluate associations of health behaviours with health and QoL outcomes while controlling for background characteristics. RESULTS:Greater social participation was associated with better QoL [??=?0.127, standard error (SE)?=?0.002, p?<?0.001], cognitive function (??=?0.154, SE?=?0.033, p?<?0.001) and physical function (??=?-?0.102, SE?=?0.008, p?<?0.001). Physical activity was associated with better QoL (??=?0.091, SE?=?0.015, p?<?0.001) and physical function (??=?-?0.155, SE?=?0.062, p?<?0.001). Sufficient fruit and vegetable consumption was associated with better QoL (??=?0.087, SE?=?0.015, p?<?0.001). CONCLUSIONS:Our findings suggest that social participation is an important health behaviour for quality of life and cognitive function among chronically ill older people in China. Health promotion programmes should expand their focus to include social participation as a health behaviour, in addition to physical activity, maintenance of a healthy diet and not smoking.

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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.

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