title: Taiwanese parents' perceptions of their very low-birth-weight infant with developmental disabilities.
abstract: This study explores the perceptions and experiences of Taiwanese parents in coping with the unfolding evidence of a disability, their response to the official diagnosis, and their views about their child's developmental disability. This descriptive qualitative study is a partial analysis of data from a larger study including 19 Taiwanese parents of very low-birth-weight infants with developmental disability at 6 and 12 months of corrected age. Four themes were generated: uncertainty and worry about developmental progress, search for meaning and supernatural will, desire for normality and attitude toward services, and finding a balance point in family life and relationships. The parents of very low-birth-weight infants face uncertainty about developmental and other potential problems in the infant's early age. Adequate information related to infant development needs to be integrated into follow-up clinic and early intervention services. Early intervention programs should not only focus on the needs of these infants but also provide support and care to the whole family. Understanding parental beliefs and values toward developmental disabilities can help neonatal and pediatric professionals to provide optimal early intervention to these families.
authors.affiliation: School of Nursing, National Taipei University of Nursing and Health Sciences, Taipei, Taiwan, Republic of China.
authors.forename: Tzu-Ying
authors.initials: TY
authors.lastname: Lee
authors.forename: Fang-Yi
authors.initials: FY
authors.lastname: Lin
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D002658:Developmental Disabilities / Q000175:diagnosis / Q000523:psychology; D018479:Early Intervention, Educational / Q000379:methods / Q000458:organization & administration; D004505:Education, Nonprofessional / Q000379:methods / Q000458:organization & administration; D005195:Family Relations; D005260:Female; D006801:Humans; D007223:Infant; D007224:Infant Care / Q000379:methods / Q000523:psychology; D019102:Infant, Very Low Birth Weight; D008297:Male; D020380:Needs Assessment; D016487:Parenting; D010290:Parents / Q000193:education / Q000523:psychology; D036301:Qualitative Research; D012944:Social Support; D013624:Taiwan; D035501:Uncertainty