Fathers of children with disabilities: encounters with health professionals in a chinese context

Abstract

Aims. The aim of this study was to examine the experiences of fathers of developmentally disabled children during interactions with health professionals in Taiwan. Background. The role of Chinese fathers in raising a disabled child has been neglected because most studies on the impact of parenting a child with disabilities in this culture have primarily focused on mothers. Design. A hermeneutic phenomenological approach was undertaken to recover and interpret fathers' experiences. Method. Sixteen fathers living with their disabled child (0-18 years old) were purposively recruited from a teaching hospital in central Taiwan. Data were collected using in-depth interviews and journal notes. All participants were interviewed twice. Interviews lasted from 50-100 minutes, and all were recorded. Results. Three shared meanings were attributed to fathers' interactions with health professionals: (1) experiencing no supportive communication, (2) missing the critical time for disability management and (3) being excluded from medical decision making. Conclusions. Fathers in Taiwan commonly rely on health professionals to solve their child's health problems owing to their perceived power to cure and their professional authority in Chinese society. However, fathers felt powerless and hopeless when they received unclear information and incorrect diagnoses, which delayed appropriate treatment. Expressions of dissatisfaction and possessing a sense of futility were common experiences related to exclusion in a paternalistic healthcare system. Relevance to clinical practice. Taiwanese clinicians' attitudes and parental-professional relationships challenge an exploration of ethics and standards of medical care shaped by Chinese culture. Ways of promoting parental inclusion in decision making and care, in particular father's inclusion, need to be explored. Recognition of the Chinese mother and father and their differing parental healthcare experiences are important to understand to ensure improvement in encounters with health professionals and the maximisation of positive health outcomes.