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.
BACKGROUND
Children and families affected by rare diseases have received scant consideration from the medical, scientific, and political communities, with parents' needs especially having received little attention. Affected parents often have limited access to information and support and appropriate health care services. While scales to measure the needs of parents of children with chronic illnesses have been developed, there have been no previous attempts to develop a scale to assess the needs of parents of children with rare diseases.


OBJECTIVE
To develop a scale for measuring the supportive care needs of parents of children with rare diseases.


METHODS
A total of 301 responses to our Parental Needs Survey were randomly divided into two halves, one for exploratory factor analysis and the other for confirmatory factor analysis (CFA). After removing unsuitable items, exploratory factor analysis was undertaken to determine the factor structure of the data. CFA using structural equation modeling was then undertaken to confirm the factor structure.


RESULTS
Seventy-two items were entered into the CFA, with a scree plot showing a likely four-factor solution. The results provided four independent subscales of parental needs: Understanding the disease (four items); Working with health professionals (four items); Emotional issues (three items); and Financial needs (three items). The structural equation modeling confirmed the suitability of the four-factor solution and demonstrated that the four subscales could be added to provide an overall scale of parental need.


CONCLUSIONS
This is the first scale developed to measure the supportive care needs of parents of children with rare diseases. The scale is suitable for use in surveys to develop policy, in individual clinical assessments, and, potentially, for evaluating new programs. Measuring the supportive care needs of parents caring for a child with a rare disease will hopefully lead to better physical and psychological health outcomes for parents and their affected children.
School of Nursing and Midwifery.
Lemuel J
LJ
Pelentsov
Sansom Institute for Health Research; School of Pharmacy and Medical Sciences, University of South Australia, Adelaide, SA, Australia.
Andrea L
AL
Fielder
School of Nursing and Midwifery, Faculty of Health, Keele University, Staffordshire, UK.
Thomas A
TA
Laws
School of Nursing and Midwifery; Sansom Institute for Health Research; Australian Institute for Health and Tropical Medicine, James Cook University, Cairns, QLD, Australia.
Adrian J
AJ
Esterman
factor analysis; measure; parents; rare diseases; scale; supportive care needs
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