Communication in Sickle Cell Disease: A Meta-Synthesis of Child Perspectives and a Qualitative Exploration of Parent Experience

  • Joanne Middleton

Student thesis: Doctor of Clinical Psychology


This thesis explores communication with children affected by sickle cell disease about their condition from the perspectives of both children and parents. It includes three papers: A literature review, an empirical paper and a critical appraisal. Papers one and two have been prepared for submission to Social Science and Medicine and Qualitative Health Research, respectively. Paper one is a meta-synthesis of qualitative literature investigating experiences of communication from the perspective of children with sickle cell disease. A systematic literature search revealed nine relevant papers, which were synthesised by extracting findings related to communication about sickle cell disease. Children were found to receive inconsistent messages about their condition from different personal and professional groups. Communication about the prognosis of sickle cell disease and the social acceptability of the condition differed across the groups. The implications for children's understandings of their condition and their adjustment are discussed. Paper two presents an empirical study of parental communication experiences with children affected by sickle cell disease. Twelve interviews were conducted and subject to inductive thematic analysis which was applied within a contextualist epistemological framework. Parents described skills in 'coaching' their child to negotiate the various challenges associated with managing sickle cell disease. They also described ways in which they avoided challenging topics of communication such as inheritance, the risk of comorbid disease and the life-long nature of the condition. The findings suggest a need for healthcare professionals to support parents in overcoming barriers to talking about difficult topics. This may facilitate more consistent communication between parents and professionals, which has implications for improving child wellbeing and adjustment. Paper three is a reflective piece and is not intended for publication. It critically evaluates papers one and two and discusses the joint implications of the findings for research and clinical practice. Reflections on the experience of conducting a meta-synthesis and an empirical qualitative study are offered in the context of personal and professional development
Date of Award1 Aug 2017
Original languageEnglish
Awarding Institution
  • The University of Manchester
SupervisorFiona Ulph (Supervisor) & Rachel Calam (Supervisor)


  • Communication
  • Parent-child communication
  • Sickle Cell Disease
  • Meta synthesis
  • Qualitative
  • Thematic analysis

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