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Factors Associated with Parental Adaptation to Children with an Undiagnosed Medical Condition

  • Original Research
  • Published:
Journal of Genetic Counseling

Abstract

Little is known about the adaptive process and experiences of parents raising a child with an undiagnosed medical condition. The present study aims to assess how uncertainty, hope, social support, and coping efficacy contributes to adaptation among parents of children with an undiagnosed medical condition. Sixty-two parents of child affected by an undiagnosed medical condition for at least two years completed an electronically self-administered survey. Descriptive analysis suggested parents in this population had significantly lower adaptation scores when compared to other parents of children with undiagnosed medical conditions, and parents of children with a diagnosed intellectual and/or physical disability. Similarly, parents in this population had significantly lower hope, perceived social support and coping efficacy when compared to parents of children with a diagnosed medical condition. Multiple linear regression was used to identify relationships between independent variables and domains of adaptation. Positive stress response was negatively associated with emotional support (B = −0.045, p ≤ 0.05), and positively associated with coping efficacy (B = 0.009, p ≤ 0.05). Adaptive self-esteem was negatively associated with uncertainty towards one’s social support (B = −0.248, p ≤ 0.05), and positively associated with coping efficacy (B = 0.007, p ≤ 0.05). Adaptive social integration was negatively associated with uncertainty towards one’s social support (B-0.273, p ≤ 0.05), and positively associated with uncertainty towards child’s health (B = 0.323, p ≤ 0.001), and affectionate support (B = 0.110, p ≤ 0.001). Finally, adaptive spiritual wellbeing was negatively associated with uncertainty towards one’s family (B = −0.221, p ≤ 0.05). Findings from this study have highlighted the areas where parents believed additional support was required, and provided insight into factors that contribute to parental adaptation.

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Acknowledgements

We thank all the participants who took the time to complete our survey and share their experiences. Dr. Biesecker’s effort was supported by the Intramural Research Program of the National Human Genome Research Institute. Aideen McInerney-Leo is supported by a University of Queensland (UQ) postgraduate scholarship (APA).

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Authors and Affiliations

  1. School of Medicine, Griffith University, Gold Coast, Australia

    Tatiane Yanes & Linda Humphreys

  2. School Psychiatry, Faculty of Medicine, University of New South Wales, Sydney, Australia

    Tatiane Yanes

  3. Psychosocial Research Group, Prince of Wales Clinical School, Faculty of Medicine, University of New South Wales, Sydney, NSW, 2052, Australia

    Tatiane Yanes

  4. University of Queensland Diamantina Institute, University of Queensland, Brisbane, Australia

    Aideen McInerney-Leo

  5. Institute of Health and Biomedical, Innovation (IHBI), Queensland University of Technology (QUT), Brisbane, QLD, Australia

    Aideen McInerney-Leo

  6. Social and Behavioral Research Branch, National Human Genome Research Institute, Bethesda, MD, USA

    Barbara Biesecker

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  1. Tatiane Yanes
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  2. Linda Humphreys
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  3. Aideen McInerney-Leo
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  4. Barbara Biesecker
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Correspondence to Tatiane Yanes.

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Conflict of Interest

Author TY, AML, LW and BB declare that they have no conflict of interest.

Human Studies and Informed Consent

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study.’

Animal Studies

No animal studies were carried out by the authors for this article.

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Yanes, T., Humphreys, L., McInerney-Leo, A. et al. Factors Associated with Parental Adaptation to Children with an Undiagnosed Medical Condition. J Genet Counsel 26, 829–840 (2017). https://doi.org/10.1007/s10897-016-0060-9

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  • DOI: https://doi.org/10.1007/s10897-016-0060-9

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