Disease knowledge and treatment adherence among patients with thalassemia major and their mothers in Taiwan

Lee, Ya-Ling; Lin, Dong‐Tsamn; Tsai, Shu-Feng

doi:10.1111/j.1365-2702.2007.02150.x

Cited by 36 publications

(43 citation statements)

References 22 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…The results confirmed such a hypothesis: 43% had inaccurate knowledge of the disease and treatment and only 48% adhered to the therapeutic regime (6) .…”

Section: The Impact Of Thalassemia Major and Its Treatments On The LIsupporting

confidence: 53%

See 1 more Smart Citation

The experience of thalassemic adults with their treatment

Ganzella

Zago

2011

Rev. Latino-Am. Enfermagem

View full text Add to dashboard Cite

This study, based on medical anthropology and oral reports, analyzes the meanings attributed by thalassemic adults to their experiences with the treatment. Interviews were used to collect data, which were analyzed through inductive thematic analysis. Eleven young adults, six of whom were men, at different ages, with different educational levels and occupations participated in the study. The meanings are discussed through the theme "the lives of patients with thalassemia in relation to their treatment". This core meaning highlights the difference made in their identity by having the disease trait, the recognition of the importance of adhering to their treatment, the difficulties in maintaining their social functions, the patients' irregular treatment adherence and their justifications for nonadherence to their treatment. Thalassemic patients conform to their condition and employ a normalization strategy to control the disease and justify irregular treatment adherence.Descriptors: Beta-Thalassemia/therapy; Culture; Nursing. Descritores: Talassemia Beta/terapia; Cultura; Enfermagem. La experiencia de los talasémicos adultos con su tratamientoEl objetivo de este estudio fue analizar los sentidos dados por los talasémicos adultos a su experiencia con el tratamiento, con base en la antropología médica y en el método del relato oral. Para la recolección de datos usamos entrevistas y seguimos el análisis temático inductivo. Participaron once adultos jóvenes, seis del sexo masculino; con edades, niveles educacionales y profesiones, distintas. Los sentidos da la experiencia son presentados por el tema "La vida del portador de talasemia con el tratamiento". El tema destaca la identidad de ser diferente por: el trazo de la enfermedad, el reconocimiento de la importancia de la adhesión al tratamiento, las dificultades en mantener sus funciones sociales y los episodios de irregularidad en la terapia y sus justificaciones. Aprendimos que los portadores están resignados con su condición y emplean la estrategia de normalización para el control de la enfermedad y para justificar la irregularidad en el tratamiento.Descriptores: Talasemia Beta/terapia; Cultura; Enfermería. Introduction The impact of thalassemia major and its treatments on the life of adult patientsA study addressing treatment adherence among 40 American individuals older than 18 years old showed that 37 of them used chelators through infusion; 77% of them had missed at least one dose in the previous month due to its side effects such as pain and irritation at the application site. The authors concluded that the chelator's side effects are responsible for non-adherence to treatment (4) .The expectations of thalassemic individuals in relation to life composed the topic of a study involving 67 Greek patients aged between 18 and 45 years old.Of these, 75% had a bachelor's degree, 71% worked, 67% had negative treatment adherence and 77.6%had important complications. The results showed that pessimism in relation to the future was predominant among those with complicatio...

show abstract

“…The results confirmed such a hypothesis: 43% had inaccurate knowledge of the disease and treatment and only 48% adhered to the therapeutic regime (6) .…”

Section: The Impact Of Thalassemia Major and Its Treatments On The LIsupporting

confidence: 53%

“…The reports show that being an adult with thalassemia major is a difficult experience due to the frequency of return medical visits, periodic transfusions, the daily use of medication, side effects caused by the transfusions and medications, and social stigma, that alter daily life, as revealed in the literature (4)(5)(6)(7)(8) .…”

Section: Discussionmentioning

confidence: 99%

The experience of thalassemic adults with their treatment

Ganzella

Zago

2011

Rev. Latino-Am. Enfermagem

View full text Add to dashboard Cite

show abstract

“…Disease knowledge was assessed by using 20 true or false questions measuring patients’ knowledge about TM from DKTM questionnaire …”

Section: Methodsmentioning

confidence: 99%

Impact of psychosocial status and disease knowledge on deferoxamine adherence among thalassaemia major adolescents

Al-Kloub

Froelicher

2013

Int J of Nursing Practice

View full text Add to dashboard Cite

This cross-sectional study aimed to explore the relationship between psychosocial status, disease knowledge and adherence to deferoxamine treatment in adolescents with thalassaemia major. A purposive sample of 36 adolescents with transfusion dependence, ages 12-19 years, was recruited. A semi-structured interview and two structured questionnaires were used. In this sample, 56% were low adherence and 36% were psychologically impaired. Statistically significant factors associated with psychological impairment were: adolescents more than 16 years; low deferoxamine adherence; mean ferritin more than 2500 μg/L; family size more than six; family income equal or less than 350 Jordanian dinar and having sibling with thalassaemia. Additionally, adolescents with high level of knowledge had significantly lower scores on Pediatric Symptom Checklist.

show abstract

“…Other KAP studies in this group however had shown a link between knowledge score and practice. [34] It could be therefore concluded that improving the knowledge of TM patients and their families about the importance of calcium and Vitamin D in preventing osteoporosis could help improve their attitude and practice and thus lower the risk of osteoporosis-related complications and consequently reduce the burden of the disease in this group of patients.…”

Section: Discussionmentioning

confidence: 99%

Knowledge, attitude, and preventive practice of major thalassemia patients regarding the importance of calcium and Vitamin D

et al. 2015

View full text Add to dashboard Cite

Disease knowledge and treatment adherence among patients with thalassemia major and their mothers in Taiwan

Abstract: Improvement of the quality of patient care, reinforcement of medical education and enhanced efforts by clinical staff to provide practical knowledge to patients with thalassemia major should significantly improve patient adherence to treatment.

Cited by 36 publications

References 22 publications

The experience of thalassemic adults with their treatment

The experience of thalassemic adults with their treatment

Impact of psychosocial status and disease knowledge on deferoxamine adherence among thalassaemia major adolescents

Knowledge, attitude, and preventive practice of major thalassemia patients regarding the importance of calcium and Vitamin D

Contact Info

Product

Resources

About