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With reduced mortality of neonatal conditions, health-related quality of life (HRQOL) has become an important clinical outcome. However, since the meaning of HRQOL in dependent, non-autonomous infants and neonates remains largely undefined, HRQOL measurement and economic evaluation are limited due to the lack of age-specific methodology. The objective was to construct a conceptual framework of neonatal and infant HRQOL (NIHRQOL) which identifies factors relevant to the neonate and infant, their relationship with each other and the caregiving environment.
Using qualitative methods, a concept was developed based on in-depth analysis of verbatim records of two focus groups (6 caregivers, 6 healthcare providers) and five interviews with caregivers of chronically ill neonates/infants (n = 2), and healthcare professionals of a pediatric tertiary healthcare center (n = 3). Two analysts independently performed thematic analysis using an inductive and contextual approach.
The majority of participants regarded NIHRQOL as an individual entity, which was closely related and strongly influenced by caregivers and family. It may be gauged by the perceived degree of effort required to achieve expected normalcy in everyday life for the neonate/infant and its family. The importance of individual HRQOL factors is developmental stage-dependent.
Neonatal and infant HRQOL is a multidimensional, multilayered and interconnected concept, where the child’s needs contribute most directly, and the caregiver’s and society’s ability to meet those needs characterize the interdependence between the child and its caregiving environment. Developmental stage-specific HRQOL instruments for premature and mature neonates, and infants are warranted to allow for valid HRQOL measurement.
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- Health-related quality of life in neonates and infants: a conceptual framework
Nicole T. de Silva
Wendy J. Ungar
Ahmed M. Bayoumi
Jeffrey S. Hoch
Paul W. Wales
- Springer International Publishing
Quality of Life Research
An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation - An Official Journal of the International Society of Quality of Life Research
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649