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

WHY IT MATTERS

This validated assessment tool enables healthcare systems to systematically identify and address the specific economic, emotional, and physical support needs of parents caring for children with rare diseases, potentially improving family quality of life and care outcomes.

Researchers in Turkey tested a new questionnaire called the Parental Needs Scale for Rare Diseases to measure what parents of children with rare diseases need most. The study included 264 parents and used statistical tests to make sure the questionnaire works well and gives consistent results. This tool can help doctors and support programs better understand and meet the needs of families dealing with rare diseases.

The Validity and Reliability of the Turkish Version of the Parental Needs Scale for Rare Diseases (PNS-RD). Abstract: 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. 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 Authors: Bayraktar et al. Journal: Journal for specialists in pediatric nursing : JSPN MeSH: Humans, Turkey, Rare Diseases, Female, Male, Parents, Reproducibility of Results, Child, Adult, Surveys and Questionnaires