Development of the parental needs scale for rare diseases: a tool for measuring the supportive care needs of parents caring for a child with a rare disease

Figures & data

Table 1 Summary of EFA results using principal factor axis rotation with a Varimax orthogonal solution (n=144)

Loadinga	Item	Item description	Explained variance
Factor 1: Understanding the disease
0.754	Q21-02	Teaching my child about their disease	9.617%
0.732	Q21-06	Explaining my child’s disease to other children
0.713	Q21-04	Explaining my child’s disease to my parents or relatives
0.693	Q21-05	Responding when friends, neighbors, or others ask questions about my child
Factor 2: Working with health professionals
0.803	Q16-02	The overall support that you get from health professionals for your child	9.156%
0.770	Q16-01	Having a consistent team of health professionals taking overall responsibility for your child’s health
0.767	Q16-03	Feeling that you are part of a health care team looking after your child
0.676	Q16-04	How much health professionals know about your child’s disease
Factor 3: Emotional issues
0.749	Q39-04	Grief, sadness, hopeless, depressed	9.001%
0.706	Q39-06	Isolated, lonely, alienated, rejected
0.679	Q39-01	Angry, annoyed, frustrated
Factor 4: Financial needs
0.742	Q25-05	Paying for babysitting or respite care	8.357%
0.731	Q25-02	Paying for special equipment or special clothing
0.727	Q25-01	Paying for medical care or therapy

Note:

a Correlation between factor and item.

Abbreviation: EFA, exploratory factor analysis.

Table 2 Summary of CFA results using maximum likelihood estimation and imputation of missing values (n=157)

Factor	Item	Item description	Stand coef	Sig	95% CI
Factor 1: Understanding the disease	Q21-02	Teaching my child about the disease	0.654	<0.001	0.542–0.765
	Q21-04	Explaining my child’s disease to my parents or relatives	0.838	<0.001	0.777–0.899
	Q21-05	Responding when friends, neighbors, or others ask questions about my child	0.948	<0.001	0.910–0.985
	Q21-06	Explaining my child’s disease to other children	0.849	<0.001	0.790–0.906
Factor 2: Working with health professionals	Q16-01	Having a consistent team taking overall responsibility for your child’s health	0.888	<0.001	0.838–0.937
	Q16-02	The overall support that you get from health professionals for your child	0.906	<0.001	0.860–0.952
	Q16-03	Feeling that you are part of a health care team looking after your child	0.842	<0.001	0.783–0.901
	Q16-04	How much health professionals know about your child’s disease	0.627	<0.001	0.516–0.736
Factor 3: Emotional issues	Q39-01	Angry, annoyed, frustrated	0.775	<0.001	0.664–0.885
	Q39-04	Grief, sadness, hopeless, depressed	0.771	<0.001	0.661–0.880
	Q39-06	Isolated, lonely, alienated, rejected	0.771	<0.001	0.657–0.883
Factor 4: Financial needs	Q25-01	Paying for medical care or therapy	0.703	<0.001	0.569–0.836
	Q25-02	Paying for special equipment or special clothing	0.829	<0.001	0.713–0.942
	Q25-05	Paying for babysitting or respite care	0.694	<0.001	0.572–0.817
Overall needs score	Factor 1	Understanding the disease	0.696	<0.001	0.484–0.908
	Factor 2	Working with health professionals	0.596	<0.001	0.394–0.798
	Factor 3	Emotional issues	0.448	<0.001	0.218–0.678
	Factor 4	Financial needs	0.549	<0.001	0.298–0.800

Notes: Goodness of fit: root mean square error of approximation =0.075, 90% CI: 0.054–0.096; comparative fit index =0.942.

Abbreviations: CFA, confirmatory factor analysis; Stand coef, standardized coefficients; Sig, significance; CI, confidence interval.

Table 3 Descriptive statistics for subscales (n=301)

Scale	Mean	SD	N
Understanding the disease	17.45	6.84	240
Working with health professionals	13.65	6.87	262
Emotional issues	12.77	6.03	223
Financial needs	13.00	7.84	236
Overall needs score	56.52	15.35	223

Abbreviation: SD, standard deviation.