Exploring quality of life assessment tools for children with disabilities and their families
Medical Review (Med. pregled), 2024, 60(1), 18-27.
S. Nikolova1,5, S. Eyubova2,5, S. Popova3, N. Usheva1,5, E. Small4
1 Department of Social Medicine and Healthcare Organization, Medical University – Varna, Bulgaria
2 Department of Social Work, Konstantin Preslavsky University of Shumen – Shumen, Bulgaria
3 Sv. Anna Hospital – Varna, Bulgaria
4 School of Social Work, University of Texas – Arlington, USA
5 Research Group Nutrilect, Medical University – Varna, Bulgaria
Abstract. This review delves into the landscape of Quality of Life (QoL) assessment instruments employed in the context of children with disabilities and their families. The purpose of the review is to examine widely used instruments for assessing the quality of life in children and families with children with disabilities. A comprehensive search through Google Scholar and Web of Science yielded 3313 articles, eventually culminating in the inclusion of 15 instruments. Employed across two distinct stages, the selection process initially focused on identifying articles utilizing standardized questionnaires to measure QoL in children with disabilities or families with disabled members, resulting in the inclusion of 1146 articles. Subsequently, the review meticulously evaluated and selected 15 instruments for in-depth analysis. These instruments encompass a spectrum of methodologies, targeting either comprehensive or condition-specific domains, capturing self- or proxy-reported perspectives, and catering to adults or children. The amalgamation of these facets presents a panoramic view of QoL assessment instruments, paving the way for informed interventions tailored to the diverse contexts of children with disabilities and their families.
Key words: quality of life, disability, children with disabilities, families with children with disabilities, instrument
Address for correspondence: Silviya Nikolova, PhD, e-mail: silviya.p.nikolova@mu-varna.bg