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Psychosocial Profiles of Parents of Children with Undiagnosed Diseases: Managing Well or Just Managing?

Publication ,  Journal Article
McConkie-Rosell, A; Hooper, SR; Pena, LDM; Schoch, K; Spillmann, RC; Jiang, Y-H; Cope, H; Undiagnosed Diseases Network, ; Palmer, C; Shashi, V
Published in: J Genet Couns
August 2018

Little is known about the psychosocial profiles of parents who have a child with an undiagnosed chronic illness. The National Institutes of Health Undiagnosed Diseases Network (UDN) evaluates individuals with intractable medical findings, with the objective of discovering the underlying diagnosis. We report on the psychosocial profiles of 50 parents whose children were accepted to one of the network's clinical sites. Parents completed questionnaires assessing anxiety, depression, coping self-efficacy, and health care empowerment at the beginning of their child's UDN clinical evaluation. Parents of undiagnosed children had high rates of anxiety and depression (~ 40%), which were significantly inversely correlated with coping self-efficacy, but not with health care empowerment. Coping self-efficacy, depressive, and anxiety symptoms were better in parents with older children and with longer duration of illness. Gender differences were identified, with mothers reporting greater health care engagement than fathers. Overall, our findings suggest that parents of children with undiagnosed diseases maintain positive coping self-efficacy and remain actively engaged in health care and to a lesser degree tolerance for uncertainty, but these come with a high emotional cost to the parents. As the parents' psychological needs may not be obvious, these should be ascertained and the requisite support provided.

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Published In

J Genet Couns

DOI

EISSN

1573-3599

Publication Date

August 2018

Volume

27

Issue

4

Start / End Page

935 / 946

Location

United States

Related Subject Headings

  • Uncertainty
  • Surveys and Questionnaires
  • Self Efficacy
  • Rare Diseases
  • Parents
  • Middle Aged
  • Male
  • Humans
  • Genetics & Heredity
  • Female
 

Citation

APA
Chicago
ICMJE
MLA
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McConkie-Rosell, A., Hooper, S. R., Pena, L. D. M., Schoch, K., Spillmann, R. C., Jiang, Y.-H., … Shashi, V. (2018). Psychosocial Profiles of Parents of Children with Undiagnosed Diseases: Managing Well or Just Managing? J Genet Couns, 27(4), 935–946. https://doi.org/10.1007/s10897-017-0193-5
McConkie-Rosell, Allyn, Stephen R. Hooper, Loren D. M. Pena, Kelly Schoch, Rebecca C. Spillmann, Yong-Hui Jiang, Heidi Cope, Heidi Undiagnosed Diseases Network, Christina Palmer, and Vandana Shashi. “Psychosocial Profiles of Parents of Children with Undiagnosed Diseases: Managing Well or Just Managing?J Genet Couns 27, no. 4 (August 2018): 935–46. https://doi.org/10.1007/s10897-017-0193-5.
McConkie-Rosell A, Hooper SR, Pena LDM, Schoch K, Spillmann RC, Jiang Y-H, et al. Psychosocial Profiles of Parents of Children with Undiagnosed Diseases: Managing Well or Just Managing? J Genet Couns. 2018 Aug;27(4):935–46.
McConkie-Rosell, Allyn, et al. “Psychosocial Profiles of Parents of Children with Undiagnosed Diseases: Managing Well or Just Managing?J Genet Couns, vol. 27, no. 4, Aug. 2018, pp. 935–46. Pubmed, doi:10.1007/s10897-017-0193-5.
McConkie-Rosell A, Hooper SR, Pena LDM, Schoch K, Spillmann RC, Jiang Y-H, Cope H, Undiagnosed Diseases Network, Palmer C, Shashi V. Psychosocial Profiles of Parents of Children with Undiagnosed Diseases: Managing Well or Just Managing? J Genet Couns. 2018 Aug;27(4):935–946.
Journal cover image

Published In

J Genet Couns

DOI

EISSN

1573-3599

Publication Date

August 2018

Volume

27

Issue

4

Start / End Page

935 / 946

Location

United States

Related Subject Headings

  • Uncertainty
  • Surveys and Questionnaires
  • Self Efficacy
  • Rare Diseases
  • Parents
  • Middle Aged
  • Male
  • Humans
  • Genetics & Heredity
  • Female