Development and evaluation of an instrument to measure parental satisfaction with quality of care in neonatal follow-up

The goal of the research presented in this thesis was to develop a reliable and valid, discriminative instrument to measure parental satisfaction with the quality of care provided in neonatal follow-up programs. The proposed instrument was developed in a series of steps that involved input from a total of 381 parents of children from two neonatal follow-up (NFU) programs as well as 24 health care professionals in three NFU programs in Southern Ontario, Canada. Initially, potential instrument items were generated from an examination of relevant instruments, published research, and focus groups with health care experts and parents from NFU programs. Applying a clinimetric approach, only those items that were rated as most important by a sample of parents were selected to undergo the next step of instrument development. After parent pretesting and content validity assessment by health care professionals, the preliminary instrument was administered to a second sample of parents and underwent item-analysis. The resulting 16-item instrument captures two dimensions of parental satisfaction with quality of care—process (the interaction between the health care providers and the parent) and outcomes (knowledge acquisition and alleviation of parents' anxiety about their child's development). A confirmatory factor analysis supported the multidimensionality of the construct. The psychometric properties of the instrument including test-retest reliability (ICC = 0.72), internal consistency (overall instrument α = 0.90), content validity, and convergent construct validity were evaluated. These assessment results suggest that the new instrument has adequate psychometric properties to be utilized as a measure of parental satisfaction with quality of care in neonatal follow-up programs. This instrument will be an important tool for researchers and clinicians in follow-up clinics across Canada—to help identify changes that may be needed in how care is delivered and to ensure that the care provided is meeting the needs of parents.