Caring for stroke-impaired elderly family members : a study of family adaptation in a Chinese context

Abstract

Although it is known that the role of the family is critical in stroke rehabilitation, little is known about the process of caring among Chinese family caregivers of stroke-impaired elderly relatives. Previous research on the process of family caring has focused on burdens and negative outcomes. To fill this gap, this study aims to explore and explain the experiences of 15 Chinese family caregivers using a grounded theory approach, which allows the formulation of hypotheses and the generation of theory from gathered data. Glaser (1978, 1992) and Straus and Corbin’s (1998) grounded theory method, which are based on symbolic interactionism (Blumer, 1937; 1969), were used to collect and analyse naturalistic data rich in human experience. Emphasis was placed on developing an analysis that illuminated the area under study and remained faithful to the constant comparative method described by Glaser (1978, 1992) and Strauss and Corbin (1998). This method allowed the more recent responses of the participants to be compared with those of earlier participants in order to identify similarities, consistencies, discrepancies and anomalies. In the course of the study, concepts emerged as the data were collected and analyzed concurrently. A two-interview qualitative approach to data collection was adopted between January 2001 and September 2003. The first in-depth interviews consisted of 15 family caregivers held between January 2001 and June 2001. The second interviews were held two years later between May 2003 and September 2003 with 13 family caregivers drawn from the first round participants. The second interviews were conducted over a period of four months and compared participants’ caring and adaptive behaviours with those investigated two years earlier in the interviews. The findings of coping behaviours and caring patterns of a culturally distinctive kind were refined and confirmed in the second interviews. Data were collected utilizing different forms of reflection as suggested by Glaser (1978, 1992) and Strauss and Corbin (1998). Data management was facilitated through the use of coding notes, memos, diagrams, and the software program QRS NUD*IST (Version 4.0). The researcher then identified a core category of "Regaining Self-perceived Control" emerging from study data which reflected the Chinese family caregivers’ process of striving to continue to fulfill the demands of their role during the transition. "Cognitive Reframing", "Behavioural Reframing" and "Experiential Reframing" were identified as the conceptual indicators that linked al the other concepts relating to the core category of "Regaining Self-perceived Control", and they appeared to be fundamental to family caregivers’ coping strategies. A theory of five stages in the adaptation process that family caregivers described as a means of regaining self-perceived control include: Uncertainty, Disruption, Accommodation, Balance, and Reconciliation. Although caring strategies were found to vary, all were influenced by Chinese family caregivers’ particular common Confucian ethical values and customs. This study set out to contribute significantly to the understanding of cultural issues and caring values that are unique to Hong Kong Chinese family caregivers of stroke-impaired elderly relatives. It will provide a basis for devising adequate interventions and resources to assist caregivers. Nurses and other health care providers can use this information in assessments and in planning individualized interventions that include family caregivers as active participants in managing caregiving. Of prime importance in meeting the complex issues of caregiving management is a client-provider relationship that permits open communication.