scholarly journals Correlates of Health-related Quality of Life in Primary Caregivers of HIV Infected and HIV Exposed Uninfected Adolescents at the Kenyan Coast

Author(s):  
Patrick Nzivo Mwangala ◽  
Derrick Ssewanyana ◽  
Paul Mwangi ◽  
Esther Chongwo ◽  
Carophine Nasambu ◽  
...  

Abstract Background: Mothers and other primary caregivers play a crucial role in looking after HIV infected, and HIV exposed uninfected adolescents in sub-Saharan Africa. Daily caring may expose these caregivers to adverse states of health. Unfortunately, very few studies have examined their health-related quality of life (HRQoL) despite the additional risk of poor health outcomes. Our study documents the HRQoL profile, and associated factors in primary caregivers of perinatally HIV infected, perinatally HIV exposed but uninfected and HIV unexposed/uninfected adolescents aged 12 – 17 years at the Kenyan Coast. Methods: This was a cross-sectional analysis of 485 primary caregivers: 195 of perinatally HIV infected adolescents, 128 of perinatally HIV exposed but uninfected adolescents and 162 of HIV unexposed/uninfected adolescents. All caregivers completed a self-report measure of HRQoL, depressive symptoms, and parenting stress. They also provided their sociodemographic information and that of the participating adolescents. We used one-way analysis of variance (and its non-parametric version) to assess statistical differences among the groups. Linear regression analyses were used to identify correlates of HRQoL among caregivers. Results: Linear regression analyses indicated that depressive symptoms, increasing age of caregiver, and caring for an HIV exposed adolescent were significantly associated with reduced HRQoL at both the RAND SF-36 overall and sub-scale level. Having a professional job relative to subsistence farming was the only factor associated with improved overall HRQoL. At subscale level, higher socioeconomic status correlated positively with HRQoL (within the limitations due to emotional problems domain) while being a grandparent, and level of education (physical functioning domain), and parenting stress (vitality domain) were negatively associated with HRQoL. Moreover, caring for a male adolescent (vitality domain) and increasing adolescent age (pain domain) was associated with declining HRQoL. Conclusions: Caregivers in this sample, especially those who are ageing, at risk of mental ill-health, and taking care of HIV exposed adolescents, appear to be vulnerable. Inclusive and multi-component interventions tailored to the caregivers' psychosocial and mental needs will potentially enhance their quality of life. Longitudinal studies are also needed to understand the underlying mechanisms and longer-term implications of the correlates of caregivers HRQoL identified in the present study.

2022 ◽  
Vol Publish Ahead of Print ◽  
Author(s):  
Nadia Carolina Reina-Gamba ◽  
Judith Medellin-Olaya ◽  
Daira Vanesa Burbano-Rivera ◽  
Hilda Mireya Miranda-Rojas ◽  
Lina Maria Vargas-Escobar ◽  
...  

Spinal Cord ◽  
2007 ◽  
Vol 45 (6) ◽  
pp. 399-403 ◽  
Author(s):  
L Blanes ◽  
M I S Carmagnani ◽  
L M Ferreira

2019 ◽  
Author(s):  
NANCY BIRUNGI ◽  
Lars Thore Fadnes ◽  
Ingunn Marie Stadskleiv Engebretsen ◽  
Stein Atle Lie ◽  
James Kashugyera Tumwine ◽  
...  

Abstract Background: Very few studies consider the oral health status and quality of life in HIV-1 exposed uninfected (HEU) children. The aim of this study was to estimate the prevalence of caries in primary teeth and its oral health related quality of life impacts in HEU children compared to HIV-unexposed-uninfected (HUU) children, whilst adjusting for confounding covariates. Methods: This study uses data from the Ugandan site of the ANRS 121741 PROMISE- PEP trial (ClinicalTrials.gov, number NCT00640263) conducted in 2009-2013 that recruited mothers with HIV-1and their uninfected children. Of 244 HEU-children-caretaker pairs available at the end of the one-year trial, 166 were re-enrolled in the ANRS 12341 PROMISE-PEP M&S study at 5-7 years and 164 were included in this study. These were age and sex-matched with 181 HUU children-caretaker comparators. Caries experience was recorded using World Health Organization’s Decayed, Missed and Filled teeth (dmft/DMFT) indices. The Early Childhood Oral health Impact Scale (ECOHIS) was used for assessment of oral health related quality of life. Mixed effects logistic regression was conducted with dmft and ECOHIS scores as outcomes and HIV-1exposure status as the main exposure. Results: Forty-eight percent of HEU children and 60% of HUU had dmft>0. Corresponding figures for ECOHIS>0 were 12% of HEU and 22% of HUU. The crude analysis showed differences related to HIV-1 exposure in caries experience and oral health related quality of life. Mixed effect logistic regression analyses were not significant when adjusted for use of dental care and toothache. If caregivers’ DMFT>0, the adjusted odds ratio for caries experience (dmft>0) was 1.6 (95% CI: 1.0-2.8) while if dmft>0 the adjusted odds ratio for quality of life impacts (ECOHIS>0) was 4.6 (95% CI: 2.0-10.6). Conclusion: The prevalence of untreated caries in primary teeth and quality of life impacts was high in this study population. HIV-1exposed uninfected children were not more likely than HUU children to experience dental caries or have impaired oral health related quality of life. Given the global expansion of the HEU child population, the present findings indicating no adverse effect of pre- and post-natal HIV-1 exposure on caries in deciduous teeth are reassuring.


2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Juan Wang ◽  
Zhe Yang ◽  
Yan Zheng ◽  
Yaling Peng ◽  
Qing Wang ◽  
...  

Abstract Objectives For patients with rheumatoid arthritis (RA) in China, little is known of how their illness perceptions affect their health-related quality of life (HRQoL). The present study investigated associations between specific illness perceptions due to RA and HRQoL features. Methods For 191 patients with RA, illness perceptions were measured using the Brief Illness Perceptions Questionnaire (BIPQ) comprising 8 domains. HRQoL was determined with the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36). Multivariate linear regression analyses were performed. Results The overall BIPQ of patients with RA was 49.09 ± 11.06. The highest and lowest scores were for concern (9.15 ± 1.81) and personal control (4.30 ± 2.52), respectively. Multivariate stepwise regression analyses showed that the overall BIPQ was significantly negatively associated with each HRQoL feature, and HRQoL total score (β = − 0.343, P < 0.001, 95% CI − 7.080 to − 4.077). Positive associations between BIPQ features and HRQoL included personal control (β = 0.119, P = 0.004, 95% CI 2.857–14.194) and treatment control (β = 0.084, P = 0.029, 95% CI 0.640–12.391). Negative associations with HRQoL were identity (β = − 0.105, P = 0.034, 95% CI − 13.159 to − 0.430) and emotional response (β = − 0.207, P < 0.001, 95% CI − 18.334 to − 6.811). Conclusions Patients with RA in China perceive their illness in ways that affect their HRQoL. These results suggest that strategies that target these perceptions may improve the quality of life of these patients.


2004 ◽  
Vol 10 (1) ◽  
pp. 47-54 ◽  
Author(s):  
J M Morales-Gonzáles ◽  
J Benito-León ◽  
J Rivera-Navarro ◽  
A J Mitchell ◽  

Objective: To describe a holistic and comprehensive approach to the assessment of sufferer’s perceptio ns of health-related quality of life (HRQ oL) in a cohort of multiple sclerosis (MS) patients. Methods: The G EDMA (Grupo de Enfermedades Desmielinizantes de Madrid, in Spanish) study is an ongoing longitudinal survey using quantitative and qualitative methodologies. The baseline cohort consisted of a large sample of MS patients recruited from 13 hospitals in Madrid, Spain. Using a standardized protocol we collected data concerning the sociodemographic and health status characteristics of patients, as well as implementing a modified Spanish version of the Functio nal A ssessment of Multiple Sclerosis quality of life instrument. Primary caregivers were interviewed using a specific protocol combined with the Zarit Burden Interview. Results: The index cohort comprised 371 MS patients (68.7% female) of mean age 38.9 ± 0.9 years. A ge, sex and clinical form distribution were similar to other MS population-based surveys. There were 258 (69.5%) relapsing-remitting (RR) MS patients and 113 (30.5%) progressive MS patients. More than one-third of the married patients with progressive MS and almost a quarter of the RRMS patients separated or divorced following a diagnosis of MS; 71.3% of the progressive MS patients as well as 65.8% of the RRMS patients were unemployed as a consequence of the disease. Q ualitative analysis showed that friendship and family relationships and occupational status were the most significant dimensions influenced by MS. O n the other hand, the speech analysis of primary caregivers showed that emotional burden was related to patients’ physical disability. Furthermore, primary caregivers described the influence of MS on their own occupatio nal status, their nonacceptance of the disease, a perceptio n of a lack of support by other members of the family as well as a ‘selfish and intransigent’ attitude of the patients themselves. Conclusions: The analysis of the G EDMA cohort provides valuable information that helps clarify the impact of MS on patients’ HRQ oL.


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