|Author:||Lee, Cheuk Kiu Johnson|
|Title:||So rare, who cares? : a study of stress and coping of parents of children with rare diseases in Hong Kong|
|Subject:||Hong Kong Polytechnic University -- Dissertations|
Rare diseases -- Patients -- Care
Sick children -- China -- Hong Kong
Parents of terminally ill children -- China -- Hong Kong
Parents of chronically ill children -- China -- Hong Kong
|Department:||Department of Applied Social Sciences|
|Pages:||ix, 171 pages : color illustrations|
|Abstract:||Rare diseases are a group of chronic and complex genetic disorders characterized by a low prevalence rate which affects less than 5 out of 10,000 individuals in Europe or less than 200,000 people in the United States. About half of new cases present at birth and affect children. Rare diseases often manifest through physical or mental impairments, severe disabilities, and some are even life-threatening. Scant research has been conducted concerning families of children with rare diseases and even less attention has been paid to the psychosocial impacts experienced by these families and the ways they cope with related difficulties in either Western countries or Chinese societies. In Hong Kong, the government has not established a definition for rare diseases or set up any policies for rare disease management. The stresses and adversities encountered by the families of children with rare diseases are unattended and hidden from society. This study examines the stresses encountered by families of children with rare diseases in Hong Kong and the ways of coping they employ to deal with these difficulties. The research aims to inform policymakers and healthcare professionals about the needs of these families, with recommendations for the support that should be provided. A descriptive qualitative research approach is adopted to investigate the experience of parents in taking care of their rare disease children. Sixteen parents from 12 families of children with rare diseases were recruited through purposive and snowball sampling. In-depth semi-structured interviews were conducted face-to-face from May to December 2015. Thematic analysis was performed after the interviews were transcribed.|
Based on the modified Supportive Care Need Framework, the stresses encountered by families of children with rare diseases are identified and categorized into six aspects: i) medical aspect, ii) informational aspect, iii) emotional and psychological aspect, iv) practical aspects, v) social aspects, and vi) social acceptance. Lack of knowledge and awareness on the part of healthcare professionals and delays in diagnoses are prevalent sources of stress. Depressive features and family relationship problems are pervasive among the parents. The Family Adjustment and Adaptation Response (FAAR) Model is adopted as the analytical framework to examine the coping resources and coping styles of the families. Information and support on the Internet, patient support groups, family resources, community resources, and support from schools are the five most important sources of coping resources utilized by the families. Copings styles of the families are differentiated into three categories: i) meaning-based, ii) problem-focused, and iii) emotion-focused copings. Based on the research findings, an integrated model of FAAR for families of children with rare diseases is formulated, which provides a promising framework for investigating the stresses, coping resources and coping styles of other rare disease families. The research demonstrates that rare diseases bring enormous stress to families. Some of the challenges, however, are intrinsic to the present healthcare system in Hong Kong and the government's shirking and non-supportive attitude on rare disease management. Healthcare professionals, patient support groups, and schools are playing important roles in supporting the rare disease children families. It is crucial for the Hong Kong government to take an active stance and a leading role to coordinate the rare disease management and promote the well-being of rare disease patients and their families.
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