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The Role of Parent/Caregiver with Children Affected by Rare Diseases: Navigating between Love and Fear

Author

Listed:
  • Beni Gómez-Zúñiga

    (Faculty of Psychology and Educational Sciences, Universitat Oberta de Catalunya, 08018 Barcelona, Spain)

  • Rafael Pulido

    (Education Department, Universidad de Almería, 04120 Almería, Spain)

  • Modesta Pousada

    (Faculty of Psychology and Educational Sciences, Universitat Oberta de Catalunya, 08018 Barcelona, Spain)

  • Manuel Armayones

    (eHealth Center, Universitat Oberta de Catalunya, 08018 Barcelona, Spain)

Abstract

In this paper, we propose a vision of the role of parent/caregiver with children affected by a rare disease. This vision is rooted in data obtained from our own research; however, our analysis and interpretation of this data have been subsequently checked against existing theoretical models. The research aims to explore how parents who look after children with a rare disease experience their role as caregivers and how they assimilate their role identity in this task. Semi-structured interviews were performed with parents of 10 children, and a qualitative data analysis was conducted using grounded theory. We have identified ten main categories using a grounded theory approach: stress, disorientation, insecurity, isolation, faith, trust, attention, communication with professionals, private proactivity and public proactivity. Our results also show that when parents perceive a greater burden due to looking after a child with a rare disease, the result is a change in the usual parental role. In our contribution, we offer a general outline of how parents build a role identity centred on caring for a child with a rare disease. We posit that this role identity is the outcome of the parents’ success or failure in gradually overcoming fear through love. We have conceptualized this process as navigating between love and fear.

Suggested Citation

  • Beni Gómez-Zúñiga & Rafael Pulido & Modesta Pousada & Manuel Armayones, 2021. "The Role of Parent/Caregiver with Children Affected by Rare Diseases: Navigating between Love and Fear," IJERPH, MDPI, vol. 18(7), pages 1-20, April.
  • Handle: RePEc:gam:jijerp:v:18:y:2021:i:7:p:3724-:d:529332
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    References listed on IDEAS

    as
    1. Megan Thornton & Shirley S. Travis, 2003. "Analysis of the Reliability of the Modified Caregiver Strain Index," The Journals of Gerontology: Series B, The Gerontological Society of America, vol. 58(2), pages 127-132.
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