Dataset Information

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.

ABSTRACT:

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.

Method

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.

Conclusion

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.

SUBMITTER: Pelentsov LJ

PROVIDER: S-EPMC5024776 | biostudies-literature | 2016

REPOSITORIES: biostudies-literature

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Publications

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.

Pelentsov Lemuel J LJ Fielder Andrea L AL Laws Thomas A TA Esterman Adrian J AJ

Journal of multidisciplinary healthcare 20160909

<h4>Background</h4>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 th ...[more]

PMID: 27672327

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Project description:Parental stress is related to child mental health problems, with numerous evidence indicating that it is an important predictor of parenting and parent-child relationship. New approaches to psychopathology could be particularly informative for clinical research, however, there is limited research that employs network analysis with parents. Network analysis could contribute to a better understanding of the relationship between child mental health problems and parental stress by highlighting the most central nodes and how the two constructs influence each other. The scope of the study was to identify potential new intervention targets to reduce the mental health problems of children and prevent contagion between parent stress and child psychopathology. Furthermore, we also sought to test whether the dynamic between parental stress and child psychopathology differs across the level of parent stress and child total difficulties. In this endeavor, we had three main directions. First, we estimated a network at the level of child mental health problems and identified the most central nodes. Second, we mapped the main paths through which parent stress and child mental health problems communicate with each other. Third, we investigated the network invariance across the level of parent stress (high vs moderate) and child mental health problems (low vs. high total difficulties). Participants (N = 1014) were parents of children with ages between four and 17 years old. The analyses were conducted in RStudio. Results indicated that perceived coping was a central node, bridging the two constructs. The global strength of the network was higher for parents who reported high levels of stress compared to those who reported only moderate levels of stress. In contrast, we found that the global strength of the network was lower for children with high levels of total difficulties compared to those with low levels of total difficulties. In conclusion, we argue the importance of focusing on the targeting nodes with high bridge centrality, such as perceived coping, for designing prevention and intervention programs. Future research should use temporal dynamics between parental stress and child mental health problems and explore mechanisms between the two constructs.Supplementary informationThe online version contains supplementary material available at 10.1007/s12144-022-03520-1.

Dataset Information

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

Objective

Method

Results

Conclusion

Publications

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.

Similar Datasets

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