Psychosocial burden in thalassemia

Khurana, Atika; Katyal, Sudha; Marwaha, R. K.

doi:10.1007/bf02859278

Cited by 53 publications

(48 citation statements)

References 7 publications

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“…Promotion of social knowledge, regular clinical checkups and modern treatment strategies could help to increase the hopes and life expectancy of thalassemic patients. 32 Our study was limited by the lack of a control group, and therefore we were unable to compare the QoL scores of thalassemic patients with similar scores in a normal population. In addition, because this was a patient population in a single referral institution, the results may not be representative of patients in…”

Section: Discussionmentioning

confidence: 98%

Quality of life among Iranian patients with beta-thalassemia major using the SF-36 questionnaire

et al. 2013

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CONTEXT AND OBJECTIVE: Patients with beta-thalassemia major (β-TM) experience physical, psychological and social problems that lead to decreased quality of life (QoL). The aim here was to measure health-related QoL and its determinants among patients with β-TM, using the Short Form-36 (SF-36) questionnaire. DESIGN AND SETTING: Cross-sectional study at the Hematology Research Center of Shiraz University of Medical Sciences, in southern Iran. METHODS: One hundred and one patients with β-TM were randomly selected. After the participants' demographics and disease characteristics had been recorded, they were asked to fill out the SF-36 questionnaire. The correlations of clinical and demographic factors with the QoL score were evaluated. RESULTS: There were 44 men and 57 women of mean age 19.52 ± 4.3 years (range 12-38). On two scales, pain (P = 0.041) and emotional role (P = 0.009), the women showed significantly lower scores than the men. Lower income, poor compliance with iron-chelating therapy and presence of comorbidities were significantly correlated with lower SF-36 scores. These factors were also found to be determinants of worse SF-36 scores in multivariate analysis. CONCLUSIONS: We showed that the presence of disease complications, poor compliance with ironchelating therapy and poor economic status were predictors of worse QoL among patients with β-TM. Prevention and proper management of disease-related complications, increased knowledge among patients regarding the importance of managing comorbidities and greater compliance with iron-chelating therapy, along with psychosocial and financial support, could help these patients to cope better with this chronic disease state. RESUMO

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Section: Discussionmentioning

confidence: 98%

Quality of life among Iranian patients with beta-thalassemia major using the SF-36 questionnaire

et al. 2013

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“…Also, they suffer from decreased self-esteem, feelings of difference from others, poor self-image, need to be dependent, and anxiety problems (7). In the study by Messina et al (8), severe psychological problems in young adults with thalassemia major were reported.…”

Section: Discussionmentioning

confidence: 99%

Impact of Education on Awareness Towards Reproductive Health in Women With Beta-Thalassemia Major

et al. 2016

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Objectives: This study aimed to investigate the effect of nursing educational programs on the awareness of females with β-thalassemia major (β-TM) regarding their disease and reproductive health.Methods: Thirty-nine consecutive female patients with β-TM (age range between 20 and 32 years) participated in this interventional pre-post study. All patients attended the Thalassemia Clinic of Dastgheib hospital, a referral governmental center in Shiraz, Southern Iran. Awareness of patients regarding reproductive health was evaluated by a designed questionnaire. The intervention consisted of nursing educational program regarding important issues related to reproductive health of female patients with beta-TM. Knowledge of patients was revaluated and compared with their knowledge before education. Data were analyzed using SPSS software v.21 using Paired t-test, Pearson correlation test and Mann-Whitney test.Results: Total awareness score significantly increased after education (mean ± standard deviation (SD): 16.12 ± 1.67 vs. 13.69 ± 2.35, P < 0.001). Increased knowledge of patients after the intervention was not significantly associated with educational level or with age of the patients (P = 0.058 and P = 0.395, respectively). Conclusions:An educational program can be helpful in increasing awareness of females with β-TM regarding their disease and reproductive health issues resulting in increased life expectancy and quality of life.

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“…Thalassemia is the most common hematological disease that has no definitive cure (1). According to available statistics, each year approximately 60,000 children are born with thalassemia worldwide (2).…”

Section: Introductionmentioning

confidence: 99%

“…The work of Verschueren et al showed that a significant relationship exists between social acceptance and positive self-concept (10). Similarly, Khurana et al (2006) showed that 68% of children with thalassemia status didn't feel good about their skeletal status and were not satisfied with their mental picture, which also led to low selfconcept. Almost all of them referred to their physical appearance as a major cause of their frustration (1).…”

Section: Introductionmentioning

confidence: 99%

“…Similarly, Khurana et al (2006) showed that 68% of children with thalassemia status didn't feel good about their skeletal status and were not satisfied with their mental picture, which also led to low selfconcept. Almost all of them referred to their physical appearance as a major cause of their frustration (1). Social acceptance and self-concept improvement is possible through relationships with their peers, family and relatives, being accepted by family and peers (11), and also participation in group games and sports activities (12).…”

Section: Introductionmentioning

confidence: 99%

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The Relationship Between Social Capital and Self-Concept in Adolescents With Thalassemia Major

Renani

Dashtbozorgi

Papi

et al. 2016

Jundishapur J Chronic Dis Care

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Background: Thalassemia is among the most common hematological diseases, but it has no definitive cure. The self-concept in adolescents with thalassemia major changes due to changes in their facial form. Among the factors affecting the patient's selfconcept is social capital. Objectives: The study aims to examine the relationship between social capital and self-concept in adolescents with thalassemia major, using a sample of patients admitted to Shafa hospital in Ahvaz, Iran in 2014. Patients and Methods: This descriptive-analytical study was performed on 146 adolescents (age range, 13 -18 years) with thalassemia major who were referred to the hemoglobinopathy ward of Shafa hospital in Ahvaz, Iran to receive blood. The sampling method was a census. Data collection was completed using the Onyx and Bullen social capital questionnaire and Piers Harris's children's selfconcept scale. After obtaining the informed consent of the patients' parents, questionnaires were handed to patients in different shifts and answered in the presence of the researcher. To analyze the data, descriptive statistics and analytical statistics (mean, std. deviation, and Pearson correlation) were carried out (CI 95%).

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Psychosocial burden in thalassemia

Abstract: There is tremendous psychosocial disease burden perceived by the affected adolescents and hence it is imperative to ameliorate it by promoting a clear understanding of the disease and initiating intervention programs.

Cited by 53 publications

References 7 publications

Quality of life among Iranian patients with beta-thalassemia major using the SF-36 questionnaire

Quality of life among Iranian patients with beta-thalassemia major using the SF-36 questionnaire

Impact of Education on Awareness Towards Reproductive Health in Women With Beta-Thalassemia Major

The Relationship Between Social Capital and Self-Concept in Adolescents With Thalassemia Major

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