Legal guardians understand how children with the human immunodeficiency virus perceive quality of life and stigma.
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ABSTRACT:
SUBMITTER: Rydstrom LL
PROVIDER: S-EPMC4744666 | biostudies-other | 2015 Sep
REPOSITORIES: biostudies-other
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Project description:BackgroundICU patients frequently undergo non-life-saving invasive procedures. When patient informed consent cannot be obtained, legal guardianship (LG), often from a close relative, may be required by law. The objective of this cohort study was to investigate the attitudes of LGs of ICU patients regarding the process of decision making for invasive non-life-saving procedures.MethodsThe study was conducted from May 2009 until June 2010 in general medical/surgical ICUs in two large Israeli medical centers. All 64 LGs who met the study criteria agreed to participate in the study. Three questionnaires were administered: a demographic data questionnaire, the Family Satisfaction with ICU 34 Questionnaire, and the Attitudes towards the LG Decision Making Process questionnaire, developed by the authors.ResultsThe sample consisted of 64 LGs. Most participants were married (n = 56, 87.5%), male (n = 33, 51.6%), who had either a high school (n = 24, 37.5%) or college (n = 19, 29.7%) education, and were at a mean age of 49.2 (±11.22). Almost all of the procedures performed were tracheotomies (n = 63, 98.4%). About two-thirds of the LGs preferred decisions to be made by the medical staff after discussing options with them (n = 42, 65.6%) and about three-fifths stated that decisions could be made without the need for the appointment of an LG (n = 37, 57.8%). Attitudes towards ease of obtaining information and honesty of information were more positive compared to those of consistency and understanding of information.ConclusionsThe legal guardianship process requires better communication and more understandable information in order to assist LGs in making decisions for others in at times vague and stressful situations.
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Project description:Food insecurity is associated with reduced physical, social, and psychological functioning in children. There has been sparse research into child food insecurity that incorporates children's own perspectives, as adults are often interviewed as child proxies. While a nuanced, child-centred understanding of food insecurity is needed to inform effective policy and program responses, little is known about Australian children's firsthand understanding or experience of household food insecurity. This study aimed to fill this gap by inviting preadolescent children's perspectives. Eleven participants aged 10-13 years (seven girls and four boys) took part in the study and were recruited from an Australian charity school holiday camp that targets severely disadvantaged youth. Children took part in individual semi-structured interviews that incorporated drawings and emoji scales. Qualitative interviews were audio recorded, transcribed, and analysed using thematic techniques. Four themes emerged from the data analysis, children had: (i) financial understanding; (ii) awareness of food insecurity and coping mechanisms; (iii) sharing, empathy, and compassion for food insecure families; and (iv) described the nature of 'food' preparation. This study provides a child-centric analysis, demonstrating how children's agency is enacted and constrained in food insecure contexts. This child-derived understanding of food insecurity provides a critical basis from which to build effective approaches to assess and respond to this significant social issue.
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Project description:ObjectiveThe inclusion of the Community Health Index in the recording of National Health Service (NHS) contacts in Scotland facilitates national linkage of data such as prescribing and healthcare utilisation. This linkage could be the basis for identification of adverse drug reactions. The aim of this article is to report the views of healthcare professionals on data sharing, ownership and the legal and other applicable frameworks relevant to linkage of routinely collected paediatric healthcare data.DesignQualitative study using semistructured face-to-face interviews addressing the study aims.ParticipantsPurposive sample of professional stakeholders (n=25) including experts on ethics, data protection, pharmacovigilance, data linkage, legal issues and prescribing. Interviews were audio-recorded, transcribed and thematically analysed using a framework approach.ResultsParticipants identified existing data sharing systems in the UK. Access to healthcare data should be approved by the data owners. The definition of data ownership and associated legal responsibilities for linked healthcare data were seen as important factors to ensure accountability for the use of linked data. Yet data owners were seen as facilitators of the proposed data linkage. Twelve frameworks (legal, regulatory and governance) applicable to the linkage of healthcare data were identified.ConclusionsA large number of potentially relevant legal and regulatory frameworks were identified. Ownership of the linked data was seen as an extension of responsibility for, or guardianship of, the source datasets. The consensus emerging from the present study was that clarity is required on the definition of data sharing, data ownership and responsibilities of data owners.
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Project description:BackgroundThe aim of this study was to adapt and modify the HIV/AIDS Stigma Instrument-Patient to develop the COVID-19 Stigma Instrument-Patient (CSI-P) and validate its psychometric characteristics, as well as explore how affected individuals in China experienced COVID-related stigma and its associated variables, including depressive symptomology and quality of life (QOL).MethodsFrom September to October 2020, 151 COVID-19 survivors recruited in Shanghai, China, completed a set of measures of demographic characteristics, depression, stigma, and QOL.ResultsThe 15-item CSI-P-2 achieved a Cronbach's α of 0.67 to 0.91. The six-factor structure was obtained by exploratory factor analysis. The mean score for the CSI-P-2 in Chinese COVID survivors was 8.14 ± 9.98. Regression analysis showed that survivors' age, comorbid diseases, education levels, and loneliness level were the factors influencing their COVID-19 stigma, explaining 37.80% of the total variance (F = 19.25, p < 0.001). Also, stigma's effect on QOL was significant in direct and indirect paths mediated by depressive symptomology.LimitationsFirst, this sample might limit the generalization of the findings to other Chinese-speaking regions. Second, future longitudinal or experimental studies are warranted for checking and further refinement of the scale. Finally, future studies are needed on the changing dynamics of stigma in different stages of the pandemic.ConclusionsThe 29-item CSI-P-2 with six domains is an instrument with sound psychometric properties that can be used to measure COVID-19 stigma during the COVID-19 outbreak and, later, for COVID-19 survivors. Future studies should explore how to integrate the significant demographic and psychological characteristics influencing the experience of stigma work on this study into the development of stigma-reducing interventions.
| S-EPMC8541885 | biostudies-literature
Project description:The association between HIV-associated neurocognitive impairment (NCI) and health-related quality of life (HRQoL) is not well known. We investigated this association among the CNS (Central Nervous System) HIV Antiretroviral Therapy Effects Research (CHARTER) study participants. We performed factor analysis to distinguish physical and mental HRQoL, followed by general linear models. We analyzed 1,340 HIV participants, including 35.6% with NCI, 77.2% males, 70.5% unemployed, and 42.2% with depression. Impaired participants had lower (worse) mental and physical HRQoL mean scores compared to unimpaired participants. NCI was negatively associated with mental HRQoL in crude (mean difference: -4.38; 95% CI: -6.70 to -2.06) and adjusted analysis (-2.56, -4.83 to -0.30). NCI was also negatively associated with physical HRQoL in unadjusted analysis (-4.62, -7.45 to -1.78), though the association weakened in the adjusted analysis (-2.20, -4.81 to 0.40). The association between NCI and HRQoL was confounded mainly by employment and was partially mediated by depression. These findings suggest that future strategies aimed at improving HRQoL among HIV-infected patients with NCI might benefit from concurrent management of depression.
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Project description:Background:Stigma against HIV profoundly affects the quality of life (QOL) of people living with HIV/AIDS (PLWHA). We aimed to assess the factors associated with QOL in PLWHA in Iran, specifically HIV-related stigma, sociodemographic and clinical characteristics. Methods:Two hundred PLWHA participated in this cross-sectional study. Data were collected using sociodemographic, stigma, and WHO-QOL-BREF questionnaires. Correlations, ANOVAs, and Student's t-distribution tests were performed as bivariate analyses. We employed stepwise multiple linear regression analysis to explore the main factors associated with QOL domains. Results:Six domains of QOL were negatively correlated with three domains of stigma (p<0.001 for all). Stepwise multiple linear regression revealed that, after adjusting for confounders, lack of healthcare insurance, having no basic knowledge of HIV/AIDs prior to diagnosis, low monthly income of participants and family, and stigma (blaming and distancing, discrimination, and fear) were associated with low mean score of different domains of QOL. Conclusion:Our findings indicated that increasing HIV/AIDS-related stigma decreases QOL in PLWHA in Iran. Attention toward decreasing stigma, improving healthcare plan, and cultivating economic condition should be given high priority to ensure improvement in total QOL and corresponding domains in PLWHA's life.
| S-EPMC6858798 | biostudies-literature
Project description:BackgroundAntiretroviral treatment improves health related quality of life (HRQoL) of people with human immunodeficiency virus (PWH). However, one third initiating first-line treatment experience virological failure and the determinants of HRQoL in this key population are unknown. Our study aims to identify determinants of among PWH failing antiretroviral treatment in sub-Saharan Africa.MethodsWe analysed data from a cohort of PWH having virological failure (> 1,000 copies/mL) on first-line ART in South Africa and Uganda. We measured HRQoL using the EuroQOL EQ-5D-3L and used a two-part regression model to obtain by-country analyses for South Africa and Uganda. The first part identifies risk factors that were associated with the likelihood of participants reporting perfect health (utility = 1) versus non-perfect health (utility < 1). The second part identifies risk factors that were associated with the EQ-5 L-3L utility scores for participants reporting non-perfect health. We performed sensitivity analyses to compare the results between the two-part model using tobit models and ordinary least squares regression.ResultsIn both countries, males were more likely to report perfect health and participants with at least one comorbidity were less likely to report perfect health. In South Africa, participants with side effects and in Uganda those with opportunistic infections were also less likely to report perfect health. In Uganda, participants with 100% ART adherence were more likely to report perfect health. In South Africa, high HIV viral load, experiencing ART side effects, and the presence of opportunistic infections were each associated with lower HRQoL, whereas participants with 100% ART adherence reported higher HRQoL. In Uganda participants with lower CD4 count had lower HRQoL.ConclusionMarkers of advanced disease (opportunistic infection, high viral load, low CD4), side effects, comorbidities and lack of ART adherence negatively impacted HRQoL for PWH experiencing virological failure.Trial registrationClinicalTrials.gov: NCT02787499.
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Project description:PurposePeople with Parkinson's disease (PD) may experience stigma due to their visible features of movement and communication difficulties. This paper aimed to examine the role of experienced stigma in health-related quality of life (QOL), after controlling for personal and clinical characteristics.MethodsThis is a preliminary analysis of a subset of baseline data from the Social Self-Management of Parkinson's Disease Study (SocM-PD), an ongoing 3-year prospective cohort study. Seventy-three people with PD (M age = 65.72, 29 women) participated in this study. Hierarchical multiple regression analyses were used to determine the role of stigma in QOL, after controlling for gender, disease severity, depression, and motor difficulties of daily living.ResultsSignificant correlations were found between QOL with gender (r = .26), disease severity (r = .38), depression (r = .65), motor difficulties of daily living (r = .71), and stigma (r = .83). After controlling for the significant covariates, stigma made a significant and unique contribution to the explanation of QOL by 13.7 % (p < 0.001). A final hierarchical multiple regression with stigma and the 4 covariates revealed an overall model that explained 77.8 % of the total variance of QOL (F [5, 63] = 48.79, p < 0.001).ConclusionsExperienced stigma appears to be a key determinant of QOL in people with PD. The results suggest the importance of further understanding stigma in PD to develop possible intervention strategies. Future work is also needed to verify the results with a larger and longitudinal dataset of the SocM-PD.
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Project description:AimsTo evaluate the health-related quality of life (HRQL) and its correlates in children and adolescents with narcolepsy.MethodsWe compared the clinical characteristics of control subjects and patients with primary narcolepsy from data collected at the National Reference Centers for Narcolepsy.ResultsThe cohort included 69 control subjects (29 boys) and 117 patients (65 boys; 59 de novo patients). Cataplexy was present in 81% and DQB1*0602 was positive in 91%. The control children were older (13.5±3.2 vs. 11.6±3.1 years, P<0.001) and less obese (1.4% vs. 60%, P<0.001). Twenty-five percent of the patients and 15.6% of the control subjects had clinically significant depressive feelings on Children's Depression Inventory (CDI?16) (NS). Fifty-three narcoleptic and 43 control adolescents, 31 narcoleptic children and 23 control children filled out the HRQL questionnaires as well as 83 parents of patients and 60 parents of control subjects. Narcolepsy seriously impacts HRQL in terms of vitality, physical well-being, relations with friends and leisure activities, especially in adolescents. Depression was the factor that most affected HRQL in both narcoleptic and control subjects. For the control subjects and the narcoleptic patients, when the CDI score was entered into the multivariable regression model adjusted for gender and age, no other continuous independent variable could significantly increase the likelihood of the model. When the CDI score increased by 1, the mean HRQL score decreased by 1.7 for narcoleptic patients and 1.5 for control subjects. Apnea-hypopnoea index, diagnosis delay, disease duration, obesity, the presence of cataplexy or treatment had no effects on HRQL.ConclusionsNarcoleptic children and adolescents were at high risk for poor HRQL. Depressive symptoms had a major impact on HRQL. We recommend a more thorough assessment and management of psychological health in this population.
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Project description:As the UNAIDS 90-90-90 targets for people living with HIV are increasingly being reached in many contexts, health-related quality of life, the so-called fourth 90, warrants special attention. HIV-related stigma and discrimination are major barriers for overall health-related quality of life despite impressive clinical and virological improvements in HIV care. There is a scarcity of well designed intervention studies that document stigma reduction in people living with HIV and few studies that specifically assess the effect of stigma on health-related quality of life. Further, few interventions target discrimination from providers outside of HIV-specific care or involve people living with HIV in both the design and implementation. Lastly, evidence on methods to reduce stigma in several underepresented key populations and geographical regions is insufficient and research on intersectional stigma (ie, the convergence of multiple stigmatised identities) needs further attention.
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