Author: Kuan, Hau-yee
Title: Identifying the needs of Chinese family caregivers of children with cancer in Hong Kong
Degree: Ph.D.
Year: 2000
Subject: Tumors in children.
Caregivers -- China -- Hong Kong.
Tumors in children -- Patients -- Family relationships.
Chronically ill children -- Care -- China -- Hong Kong.
Terminally ill children -- Home care -- China -- Hong Kong.
Terminally ill children -- Family relationships.
Chinese -- China -- Hong Kong.
Hong Kong Polytechnic University -- Dissertations
Department: Department of Nursing and Health Sciences
Pages: x, 631 leaves : col. ill. ; 31 cm.
Language: English
Abstract: The purpose of this study was to describe the needs and concerns of family caregivers caring for a child with cancer in the Hong Kong Chinese families. This study adopted a sequential mixed method design in which a qualitative phase was followed by a separate quantitative phase. In the first phase of the study, unstructured, in-depth interviews were done with a purposive sample of 28 mothers and 2 fathers to explore the family caregiving phenomenon. These families were selected according to the following stages of the illness trajectory: (1) the child was diagnosed with cancer within past three months; (2) the child was receiving active treatment; (3) the child has completed treatment; (4) the child was at terminal stage of cancer. Seven themes of family caregiver needs as emerged from the interview data included Accompanying the sick child, Facilitating the continuous growth and development of the sick child. Maintaining the caregiver's own strength, Confronting with family issues, Negotiating with the health care professionals, Obtaining information and Mobilizing community resources. The analysis of interview data resulted in a conceptual framework of family caregiver needs. This framework informed the construction of a questionnaire, the Chinese Childhood Cancer Family Caregiver Needs Survey, to measure the level of importance and level of satisfaction of their perceived needs. The psychometric properties of the instrument were determined in the second phase of the study. In the third phase of the study, a cross-sectional survey using the self-developed questionnaire was conducted. The subjects were 255 family caregivers recruited from the largest three treatment centers for childhood cancer in Hong Kong. The results show that family caregivers did have a variety of needs, which differed between the different stages of the illness trajectory. The perceived needs in descending order of importance were: Obtaining information; Accompanying the sick child; Negotiating with health care professionals; Facilitating the continuous growth and development of the sick child; Maintaining the caregivers' own strength; Confronting with family issues; and lastly Mobilizing community resources. It was found that the needs related to Mobilizing community resources were perceived as important yet not satisfied. The group of family caregivers taking care of a child at the diagnostic stage and on treatment stage tended to have more important but unmet needs than those at the off treatment stage and the long term survival stage. The findings were discussed in the context of Chinese cultural values of roles and responsibilities and the characteristics of interpersonal relationship. The implications indicated that nursing interventions must target beyond the individual child to the extended levels of social interaction and social systems while taking into account of the developmental stage of the family. Future directions for research in family caregiving are suggested.
Rights: All rights reserved
Access: open access

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