The Validity and Reliability of the Turkish Version of the Parental Needs Scale for Rare Diseases (PNS‐RD)

Purpose Parents of children with rare diseases (RDs) face significant burdens, including economic, psychosocial, and physical challenges, and long‐term care issues decrease the overall quality of life for the family. Assessing the validity and reliability of the Parental Needs Scale for Rare Diseases (PNS‐RD) for the Turkish population is a critical step in developing support systems for parents of children with rare diseases. We planned this research to evaluate the validity and reliability of the PNS‐RD in Turkish society. Methods This study was undertaken with 264 parents оf rare disease children. All data were collected using a socio‐demographic characteristics information form and the PNS‐RD scale. Explanatory Factor Analysis (EFA) and Confirmatory Factor Analysis (CFA) were used to assess our scale's validity. Then, Cronbach's α value and Pearson correlation analyses were selected to examine the item‐total score correlations. Results The scale's explained variance rate was 76.10%. In our study, all fitness markers overwrote the hallmark of 0.90 when the factor loadings exceeded the threshold of 0.30. Besides, the Root Mean Square Error of Approximation (RMSEA) was under 0.080 and had a good statistical fit. The instrument showed internal consistency in our study, and the scale's sub‐dimensions also exhibited high reliability. With all our results, the PNS‐RD is a valid and reliable scale for Turkish society's assessment of parents' needs. Its use in clinical and research settings will help pediatric nurses better understand families' unmet needs and guide support programs. Practice Implications This study on the validity and reliability of the Turkish version of PNS‐RD aims to address the gap in understanding the needs of parents with children with rare diseases. Introducing this scale into Turkish literature will establish a foundation for future research. This scale, which identifies parents' needs, will assist in developing intervention programs to meet those needs moving forward.