scholarly journals Quality of life among caregivers of thalassaemic children, attending at Thalassaemia control unit of a rural tertiary care hospital, in a sub-Himalayan district of West Bengal

2022 ◽  
Vol 8 (4) ◽  
pp. 163-168
Author(s):  
Tushar Kanti Saha ◽  
Kallol Bhandari ◽  
Eashin Gazi ◽  
Arup Jyoti Rout ◽  
Samir Dasgupta

Thalassaemia is a disease of abnormal development of red blood cells which manifests as anaemia. This chronic disease may cause mental, social, financial burdens on the families, care givers and also on health care system.To assess the quality of life (QOL) of the caregivers of thalassaemic children and to identify the predictors of quality of their physical and mental health.Institution based descriptive cross-sectional study conducted in the Thalassaemia Control Unit (TCU) of North Bengal Medical College (NBMC) from December 2018 to April 2019. Total 136 caregivers of children (≤12 years) with thalassaemia were included by complete enumeration method. Physical and mental health of the caregivers were reported in Short Form-36 (SF-36) Health Survey. Collected data were entered into MS-Excel, analysed with the help of SPSS (Version 22).Mean age of caregivers was 34.3 (SD ± 1.4 years). Most of caregivers were female (89%) and had educational qualification up to Primary school (45.6%). Majority (70.6%) of the caregivers were the mothers of the children. Most of the study participants (60.3%) had favourable Physical health Component Summary (PCS) but 64.7% of the caregivers had unfavourable Mental health component Summary (MCS). Educational status was found to be the predictor for PCS but age and relationship with the child were the predictors for MCS.Counselling, psychotherapy, social support for family members or caregivers of the thalassaemic children and community involvement with their full participation should be emphasized to reduce stigma related to thalassaemia.

Medicina ◽  
2020 ◽  
Vol 56 (12) ◽  
pp. 647
Author(s):  
Natasa Todorovic ◽  
Milutin Vracevic ◽  
Nina Rajovic ◽  
Vedrana Pavlovic ◽  
Petar Madzarevic ◽  
...  

Background and objectives: The COVID-19 pandemic has had an unprecedented reliance on informal caregivers as one of the pillars of healthcare systems. The aim of this study was to assess the quality of life of informal caregivers during the COVID-19 epidemic in Serbia. Materials and Methods: A cross-sectional study was conducted among informal caregivers during the COVID-19 epidemic in Serbia. Physical and mental quality of life was measured by the 36-Item Short-Form Health Survey. Additional data included sociodemographic characteristics, caregiver and care recipient characteristics, and COVID-19 related concerns. The qualitative component was performed using focus groups and individual in-depth interviews. Results: Out of 112 informal caregivers enrolled, most were female (80%), and the average age was 51.1 ± 12.3 years. The majority was delivering care to one person, who was a family member, on a daily basis (86.4%, 92%, and 91.1%, respectively). In multiple regression models, significant predictors of caregivers’ physical health were delivering care to a family member and a higher level of care complexity, while significant predictors of caregivers’ mental health were a higher level of care complexity and increased concerns about self-health and the health of the person being cared for due to the COVID-19 epidemic. Conclusions: Informal caregivers are experiencing negative physical and mental health outcomes during the COVID-19 epidemic in Serbia.


2021 ◽  
Vol 54 (3) ◽  
pp. 224-229
Author(s):  
Rajesh Kumar ◽  
Ali Ammar ◽  
Jehangir Ali Shah ◽  
Tahir Saghir ◽  
Ashok Kumar ◽  
...  

Objectives: To evaluate the quality of life (QOL) after percutaneous coronary intervention (PCI) using short-form health survey (SF-36) questionnaire at a tertiary care hospital in Pakistan. Methodology: It was a cross-sectional study conducted at a tertiary care cardiac center in Pakistan. A total of 433 adult patients who undergone PCI at least six months before were included. The QOL was assessed using Urdu translated version of SF-36 questionnaire. QOL scores were computed on eight domains role physical (RP), role emotional (RE), bodily pain (BP), physical function (PF), mental health (MH), vitality, general health perception (GHP), and social function (SF) along with two summary scores for mental (MCS) and physical component (PPS). Results: The highest mean score was reported for BP (73.8±19.7) followed by PF (61.7±24.3). In comparison to a year before, 52.9% and 24.7% rated their QOL somewhat better and much better respectively. Score for PF, RE, and RF were significantly higher in male, while, vitality was higher for female. Score of PPS was significantly higher for male whereas MCS score was higher for female. An increasing trend, with respect to patients’ perception of QOL compared to an year ago, was observed on five out of eight domains namely GHP, PF, RP, RE, and BP. Conclusion: Improved QOL, compared to a year ago, is reported by most of the patients. An acceptable (>50) mean score was observed on most of the QOL domains of SF-36 and it was found to be positively related to the patient stated degrees of QOL.


2011 ◽  
Vol 69 (6) ◽  
pp. 900-904 ◽  
Author(s):  
Mariana Ribeiro Queiroz ◽  
Hsin Fen Chien ◽  
Egberto Reis Barbosa

OBJECTIVE: The purpose of this study was to evaluate quality of life (QoL) in a Brazilian population of individuals with cervical dystonia (CD) without effect of botulinum toxin (BTx) or with only residual effect of BTx, and identify possible physical and social aspects that affect their QoL. METHOD: Sixty five out of sixty seven consecutive patients with CD were assessed with two instruments: Short-form Health Survey with 36 questions (SF-36) and Toronto Western Spasmodic Torticollis Rating Scale (TWSTRS). RESULTS: Severity of CD (TWSTRS) correlated moderately with two SF-36 subscale: role-physical (r= -0.42) and body pain (r= -0.43). Women also scored worse in two subscale of SF-36: vitality (p<0.05) and mental-health (p<0.005). CONCLUSION: Severity of CD and gender (female) were the main factors related to a worse QoL perception. These findings may help health professionals to predict which characteristics could lead to worse QoL, and therefore, better target their interventions to lessen the burden caused by CD.


2022 ◽  
Author(s):  
MING YI ◽  
Jing LI ◽  
Gang LIU ◽  
Weixi ZHANG ◽  
Ying WANG ◽  
...  

Abstract Background Facial appearance and expressions influence social interaction. However, few studies have reported on the stigma associated with spasms from facial dystonia. This study investigated the stigma and quality of life for these patients. Methods This cross-sectional study included 90 patients with facial dystonia (hemifacial spasm [HFS], blepharospasm [BSP], and blepharospasm-oromandibular dystonia [BOD]; 30 patients per group) and 30 individuals without dystonia (control group) from October 2019 to November 2020. All participants underwent stigma, quality of life, and mental health evaluations using seven questions related to stigma, the 36-item Short Form Health Survey, the 14-item version of the Hamilton Anxiety Scale (HAMA), and the 24-item version of the Hamilton Depression Scale. Results Nineteen patients (21.11%) felt stigmatized. Patients with BPS and HFS had more difficulty finding a job and were more susceptible to discrimination than healthy individuals. The role-physical and social function scores were significantly lower in the dystonia groups than in the control group. The vitality score of the BPS group and the mental health scores in the BPS and BOD groups were significantly less than those of the control group. The HAMA scores in the BPS and BOD groups were significantly higher than in the control group. Regression analysis demonstrated that the disease course influenced depression. Conclusion Enacted stigma from a negative public attitude may be the main factor triggering stigma in patients with facial dystonia, with detrimental effects on psychosocial outcomes, including social rights, quality of life, and mood.


2021 ◽  
Vol 71 (2) ◽  
pp. 629-33
Author(s):  
Nadia Ramzan ◽  
Samreen Misbah ◽  
Shehla Baqai ◽  
Syed Fawad Mashhadi ◽  
Imtenan Sharif ◽  
...  

Objective: The study was conducted to assess the maternal health related quality of life and its affecting factors in postpartum period. Study Design: Analytical cross-sectional study. Place and Duration of Study: The study was done in a tertiary care hospital, Rawalpindi, from Mar to Jun 2019.Methodology: By using non-probability purposive sampling technique, sample of 268 women in post-partum period were interviewed. A validated short form-36 (SF-36) Questionnaire was administered to women aged 15-49 years, who had spontaneous vaginal delivery or cesarean section, and were within six weeks up to six months of postpartum period. Data was analyzed by using SPSS-22. A p-value of ≤0.05 was taken as significant. Results: Highest median scores were reported in physical functioning 75 (55, 90) and social functioning 75 (75, 62). Lowest median scores were reported in energy fatigue 37 (31, 50) body pain 45 (22, 62) and general health 45 (30, 60). Health-related quality of life scores showed significant difference (p-value <0.05) among subgroups of time since delivery, mode of delivery, education of women, husband’s education and antenatal visits. Conclusion: The study showed that health related quality of life score of postpartum women was moderately affected; where in physical and social functioning domains strongly contributes in better quality of life. Energy/fatigue, body pain and general health are the weakest domains adversely affecting quality of life. Women in subacute postpartum phase, with cesarean section, lower educational status and less than 04 antenatal visits are associated with poorer HRQOL.


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