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A study on the subjective experience of Morquio A syndrome
Author(s)
Date Issued
2017
Publisher
Hong Kong : Hong Kong Shue Yan University
Description
Hong Kong Shue Yan University. Dept. of Counselling and Psychology.
Thesis (M.Soc.Sc.) -- Hong Kong Shue Yan University, 2017.
Includes bibliographical references (p. 66-70).
vi, 151 p.
Type
Thesis
Programme
Master of Social Sciences in Counselling Psychology
Abstract
The study explored the life stories of two Morquio A syndrome (Mucopolysaccharidosis Type IVA) patients through narrative research, their lives were summarized and divided into six major phases: normal appearance at birth, discovery of bone abnormalities and diagnosis of Morquio A, surgeries at early ages,
life with the ambiguity of Morquio A, experiencing partial loss of organ function and limited functioning, and coping with the illness. The finding also gained deeper understanding of patients’ personal experiences; and discovered their coping strategies including problem-focused coping, emotional-focused coping and cognition-focused coping. Furthermore, the information collected fills in the research gap and can serve as foundations for developing future specific services for this group
of population.
Availability at HKSYU Library
