(supervisors Dr. Tina Cartwright and Prof. Tony Towell)

Email: gullerana@yahoo.com

Abstract

Thalassemia major or Cooley’s anemia is a recessively inherited hematological disorder, which involves a complete lack of beta protein in the hemoglobin causing a life-threatening anemia. Thalassemia major imposes major demands on the children and their families. Despite a large number of Pakistani children with thalassemia, there is a scarcity of research that makes an effort to explore the experiences of these children. This research aims to explore the illness experiences of Pakistani thalassemic children and views children as active participants who are able to give meaning to the world around them. Since children’s experiences do not exist in vacuum and are influenced by and influence the experiences of people involved in the illness, this project therefore aims to explore mothers’ and healthcare professionals’ experiences of caring for these children.  Additionally, gender and rural urban differences in the illness experiences of children will be explored as they may influence the construction of these experiences. This Pakistan based research project will make use of a qualitative, inductive research design, guided by the philosophy of phenomenology in contrast to gaining direction from theoretical underpinnings. The project will consist of three studies: study 1 with children, study 2 with mothers, and study 3 with healthcare professionals, each with two phases where phase 1 consists of focus group discussions and phase 2 entails in-depth one-to-one interviews. Semantic thematic analysis and Interpretative Phenomenological analysis will be the data analysis tools for the data from phase1, and 2, respectively. Grasping the children’s perspective of illness and the exploration of relationships among the experiences of the three groups is crucial in providing and planning thalassemia healthcare as well as enhance communication and collaboration among children, parents and healthcare professionals.

Presentations

Mufti, G.R., Cartwright, T, & Towell, T. (2008). A thematic analysis of children’s experiences of living with thalassemia major in Pakistan, Presented at the Joint BPS/EHPS Health Psychology Conferences, Bath. Abstract in Psychology & Health, 23(1), 189

Mufti, G. (2007) Life with thalassemia major: An Introduction. Presententation at the First Gradute forum (SSHL), University of Westminster, London, March 7.

Mufti, G., Cartwright, T. & Towell, T. (2007) Lived experiences of growing up with thalassemia major: A Presentation of Research Proposal. Poster presented at the Psychology Cluster Research Forum, King's Fund, London, 8 May 2007.

Mufti, G., Cartwright, T. & Towell, T. (2008) A Thematic Analysis of Mothers’ Experiences of Caring For Children with Thalassemia Major. Poster presented at the Psychology Cluster Research Forum, King's Fund, London, 8 May 2008.