| Title |
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
|
|---|---|
| Published in |
Journal of Multidisciplinary Healthcare, September 2016
|
| DOI | 10.2147/jmdh.s113898 |
| Pubmed ID | |
| Authors |
Lemuel J Pelentsov, Andrea L Fielder, Thomas A Laws, Adrian J Esterman |
| Abstract |
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. To develop a scale for measuring the supportive care needs of parents of children with rare diseases. 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. 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. 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. |
X Demographics
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Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Italy | 1 | 100% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 1 | 100% |
Mendeley readers
The data shown below were compiled from readership statistics for 61 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 61 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Student > Bachelor | 11 | 18% |
| Student > Master | 6 | 10% |
| Researcher | 5 | 8% |
| Unspecified | 4 | 7% |
| Other | 4 | 7% |
| Other | 16 | 26% |
| Unknown | 15 | 25% |
| Readers by discipline | Count | As % |
|---|---|---|
| Medicine and Dentistry | 12 | 20% |
| Nursing and Health Professions | 12 | 20% |
| Psychology | 5 | 8% |
| Unspecified | 4 | 7% |
| Social Sciences | 3 | 5% |
| Other | 7 | 11% |
| Unknown | 18 | 30% |
Attention Score in Context
This research output has an Altmetric Attention Score of 1. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 12 September 2016.
All research outputs
#15,384,302
of 22,888,307 outputs
Outputs from Journal of Multidisciplinary Healthcare
#502
of 823 outputs
Outputs of similar age
#215,341
of 337,404 outputs
Outputs of similar age from Journal of Multidisciplinary Healthcare
#18
of 24 outputs
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