title: The impact of regular hospitalization of children living with thalassaemia on their parents in Sri Lanka: a phenomenological study.
abstract: This paper reports on a small phenomenological study that set out to describe what it means to have a child with thalassaemia regularly attending hospital for blood transfusion. Ten parents were invited to participate from the thalassaemia unit of a large hospital in a north-west province of Sri Lanka. Data were collected by in-depth interviews with parents. The participants' experiences are described as they reveal, in their own words, what it means to support children with this disease. With startling reality, this research portrays the problems associated with caring for these children and their regular admission to hospital. Three themes are used to present the participant's experience: worries, medical services, and helping and being helped. The findings of the study show that there have been improvements in the service and treatment of these children in Sri Lanka. However, the lives of the parents are still dire. This research should be useful locally in terms of increasing awareness of thalassaemia and raising the consciousness of Sri Lankan nurses and other health care workers, so that they are more aware of the parents' needs. Although phenomenological research is not generalizable, it is likely that the experience of the parents in this study has similarities throughout the developing world.
authors.affiliation: North Colombo Teaching Hospital, Ragama, Sri Lanka, Masters student, Adelaide University, South Australia, Australia.
authors.forename: Chitra Kumari
authors.initials: CK
authors.lastname: Nahalla
authors.forename: Mary
authors.initials: M
authors.lastname: FitzGerald
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D001294:Attitude to Health; D001803:Blood Transfusion / Q000523:psychology; D002648:Child; D002654:Child Care; D002673:Child, Hospitalized / Q000523:psychology; D017281:Cost of Illness; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D015404:Nursing Methodology Research; D009741:Nursing Staff, Hospital / Q000193:education / Q000523:psychology; D010290:Parents / Q000193:education / Q000523:psychology*; D011203:Poverty; D011787:Quality of Health Care; D012944:Social Support; D012959:Socioeconomic Factors; D013188:Sri Lanka; D011795:Surveys and Questionnaires; D013789:Thalassemia / Q000523:psychology / Q000628:therapy*