Lived experiences of mothers caring for children with thalassemia major in Thailand.

ISSUES AND PURPOSE: Thalassemic patients must be given continuous treatment throughout their lives due to the physical and psychological effects of their disorder; their families also are impacted. This qualitative study explored the lived experiences of 15 mothers of children with thalassemia major by conducting semistructured interviews; the data were analyzed utilizing content analysis. CONCLUSION: Six themes were identified: lack of knowledge about thalassemia, psychosocial problems, concerns for the future, social support systems, financial difficulty, and the effectiveness of healthcare services. PRACTICE IMPLICATIONS: These findings suggest that a holistic, culturally sensitive nursing approach should be considered when caring for children with thalassemia.

Midwives' and senior student midwives' knowledge of haemaglobinopathies in England.

OBJECTIVE: to examine midwives' and senior student midwives' knowledge concerning sickle-cell anaemia and beta-thalassaemia. DESIGN: survey using the 'Dyson' questionnaires. SETTING: study days on 26 sites across England over three months. PARTICIPANTS: 850 questionnaires were completed by a convenience sample of midwives and senior students: 401 on sickle-cell anaemia and 449 on beta-thalassaemia. In each case just under two-thirds were qualified midwives. MEASUREMENTS AND FINDINGS: most respondents underestimated the number of ethnic groups affected by these disorders. A majority gave the wrong answers to basic questions on the inheritance of these disorder, fewer than one-third answered two simple genetics questions correctly. KEY CONCLUSIONS: in order to provide an equitable service midwives need more education in this area, particularly after qualification. IMPLICATIONS FOR EDUCATION PRACTICE: education on haemoglobinopathies was linked with improved knowledge levels and appears most effective when undertaken by counsellors in haemoglobinopathies. Such education should therefore be available, especially to qualified midwives who had not previously received it.

Thalassaemia: 1 of 3. Establishing basic awareness.

Thalassaemia has until recently received little attention and consequently is not widely understood by health professionals, write Simon Dyson, Verna Davis and Rafeya Rahman. In the first of three articles they describe the illness and its treatment and the potential role for health visitors in supporting children with the condition and their families. They conclude with a brief questionnaire to test thalassaemia-awareness levels.

Midwives' knowledge of haemoglobinopathies.

A good working knowledge of haemoglobinopathies is essential if midwives are to provide an equitable service. Almost half of the respondents had received no training in this area. Where training had been received, it was usually during basic midwifery education. Few had received haemoglobinopathies training since qualification as a midwife. Training was linked with higher knowledge levels, especially concerning patterns of inheritance of haemoglobinopathies. Further training sessions were linked with a further rise in knowledge levels. Respondents taught by haemoglobinopathies counsellors had higher knowledge levels than those taught by midwife teachers or doctors.

Thalassemia and pregnancy.

Thalassemia syndromes, hemoglobinopathies characterized by anemia secondary to genetic defects of hemoglobin, are the most common of the genetic blood disorders. The prevalence and severity of the thalassemia syndromes are population dependent, with the type of thalassemia seen dependent on racial background. The health care provider must recognize the woman at highest risk for thalassemia and initiate appropriate screening and diagnostic testing. The specific thalassemia dictates the potential maternal, fetal, and neonatal consequences of anemia, red blood cell dysfunction, and systemic oxygenation issues. This article discusses normal globin chain synthesis, diagnostic testing for thalassemia, plan of management, and implications for the woman and fetus.

Behavioral contracting to improve adherence in patients with thalassemia.

Twenty-three patients with thalassemia contracted to improve their adherence with subcutaneous desferrioxamine by increasing their number of days of use. Adherence, as measured by empty vial counts, was positively reinforced by careful monitoring and behavioral reward system. Contingency contracting was successful in 76% of patients over a 6-month period, with 69% maintaining improvement in adherence 2 months after the program. Findings supported the efficacy of behavioral intervention strategies in the care of patients with chronic illness.