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The Validity and Reliability of the Turkish Version of the Parental Needs Scale for Rare Diseases (PNS-RD)
Sema Bayraktar1, Aslı Akdeniz Kudubeş2, Ayfer Aydın3
1Faculty of Nursing, Istanbul University, Istanbul, Turkey.
Insights
The Parental Needs Scale for Rare Diseases (PNS-RD) is valid and reliable for Turkish parents of children with rare diseases. This tool helps identify unmet needs to guide support programs for these families.
Area of Science:
- Pediatric Nursing
- Rare Diseases
- Psychometrics
Background:
- Parents of children with rare diseases (RDs) experience significant economic, psychosocial, and physical burdens.
- Long-term care issues associated with RDs negatively impact family quality of life.
- Developing effective support systems requires understanding the specific needs of these parents.
Purpose of the Study:
- To assess the validity and reliability of the Parental Needs Scale for Rare Diseases (PNS-RD) in the Turkish population.
- To establish a psychometrically sound instrument for evaluating the needs of parents caring for children with RDs in Turkey.
- To lay the groundwork for culturally adapted support interventions.
Main Methods:
- The study included 264 parents of children diagnosed with rare diseases.
- Data were collected using a socio-demographic form and the PNS-RD scale.
- Exploratory Factor Analysis (EFA) and Confirmatory Factor Analysis (CFA) were employed for validity assessment, alongside Cronbach's alpha and Pearson correlation for reliability.
Main Results:
- The PNS-RD explained 76.10% of the variance, with factor loadings exceeding the 0.30 threshold.
- Good statistical fit was indicated by a Root Mean Square Error of Approximation (RMSEA) below 0.080.
- The scale demonstrated strong internal consistency and high reliability across its sub-dimensions for the Turkish population.
Conclusions:
- The Turkish version of the PNS-RD is a valid and reliable instrument for assessing the needs of parents with children suffering from rare diseases.
- This validated scale will aid pediatric nurses and researchers in identifying unmet family needs.
- Findings will inform the development of targeted intervention and support programs for this vulnerable population.
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.
