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Quality of Life and Mental Health in Mothers and Fathers Caring for Children and Adolescents with Rare Diseases Requiring Long-Term Mechanical Ventilation

Author

Listed:
  • Johannes Boettcher

    (Department of Child and Adolescent Psychiatry, Psychosomatics and Psychotherapy, University Medical Center Hamburg-Eppendorf, Martinistraße 52, 20251 Hamburg, Germany)

  • Jonas Denecke

    (Department of Pediatrics, University Medical Center Hamburg-Eppendorf, Martinistraße 52, 20251 Hamburg, Germany)

  • Claus Barkmann

    (Department of Child and Adolescent Psychiatry, Psychosomatics and Psychotherapy, University Medical Center Hamburg-Eppendorf, Martinistraße 52, 20251 Hamburg, Germany)

  • Silke Wiegand-Grefe

    (Department of Child and Adolescent Psychiatry, Psychosomatics and Psychotherapy, University Medical Center Hamburg-Eppendorf, Martinistraße 52, 20251 Hamburg, Germany)

Abstract

(1) Parents caring for children and adolescents with rare diseases fear the long-term progression of the child’s disease and the loss of their parental role. The aim of this study was to examine the quality of life, mental health and associated protective factors of mothers and fathers caring for children with rare diseases requiring mechanical long-term ventilation. (2) In a cross-sectional design, data on quality of life, mental health, coping mechanisms, social support and family functioning from n = 75 affected families were collected using standardized psychometric questionnaires. (3) Mothers compared to fathers were significantly more impaired in their quality of life and mental health. Protective factors significantly associated with the respective outcomes for mothers were coping mechanisms, social support and family functioning, whereas for fathers solely the latter was found to be significant. Multiple regression analyses showed that family functioning may be the most important predictor of quality of life and mental health. (4) The results support the need for family-oriented care in parents of children with rare diseases. To reach optimal efficiency, health care providers should not only screen parents for psychosocial impairment but also provide interventions that consider gender-specific differences in psychological health.

Suggested Citation

  • Johannes Boettcher & Jonas Denecke & Claus Barkmann & Silke Wiegand-Grefe, 2020. "Quality of Life and Mental Health in Mothers and Fathers Caring for Children and Adolescents with Rare Diseases Requiring Long-Term Mechanical Ventilation," IJERPH, MDPI, vol. 17(23), pages 1-12, December.
    • Handle: RePEc:gam:jijerp:v:17:y:2020:i:23:p:8975-:d:455132
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    References listed on IDEAS

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    1. Winkler, Joachim & Stolzenberg, Heribert, 2009. "Adjustierung des Sozialen-Schicht-Index für die Anwendung im Kinder- und Jugendgesundheitssurvey (KiGGS)," Wismar Discussion Papers 07/2009, Hochschule Wismar, Wismar Business School.
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    Cited by:

    1. Juan R. Coca & Susana Gómez-Redondo & Alberto Soto-Sánchez & Raquel Lozano-Blasco & Borja Romero-Gonzalez, 2023. "Perception of Social and Educational Quality of Life of Minors Diagnosed with Rare Diseases: A Systematic Review and Meta-Analysis," IJERPH, MDPI, vol. 20(2), pages 1-17, January.
    2. Alberto Sardella & Vittorio Lenzo & Angela Alibrandi & Antonino Catalano & Francesco Corica & Maria C. Quattropani & Giorgio Basile, 2021. "A Clinical Bridge between Family Caregivers and Older Adults: The Contribution of Patients’ Frailty and Optimism on Caregiver Burden," IJERPH, MDPI, vol. 18(7), pages 1-11, March.

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