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

Gómez-Zúñiga, Beni; Pulido, Rafael; Pousada, Modesta; Armayones, Manuel

doi:10.3390/ijerph18073724

Submit to this Journal Review for this Journal Edit a Special Issue

Article Menu

...

Open AccessArticle

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

¹ and

^3,*

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

Education Department, Universidad de Almería, 04120 Almería, Spain

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

Author to whom correspondence should be addressed.

Academic Editors: Mercedes Guilabert Mora, Virtudes Pérez-Jover and Irene Carrillo Murcia

Int. J. Environ. Res. Public Health 2021, 18(7), 3724; https://doi.org/10.3390/ijerph18073724

Received: 5 March 2021 / Revised: 23 March 2021 / Accepted: 26 March 2021 / Published: 2 April 2021

(This article belongs to the Special Issue The Role of the Caregiver in Health and Social Care: The Importance of Caring for the Caregiver)

View Full-Text Download PDF

Browse Figures

Citation Export

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. View Full-Text

Keywords: caregiver; parent; rare disease; chronic disease; qualitative research; role experience

▼ Show Figures

Figure 1

This is an open access article distributed under the Creative Commons Attribution License which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited

Share and Cite

MDPI and ACS Style

Gómez-Zúñiga, B.; Pulido, R.; Pousada, M.; Armayones, M. The Role of Parent/Caregiver with Children Affected by Rare Diseases: Navigating between Love and Fear. Int. J. Environ. Res. Public Health 2021, 18, 3724. https://doi.org/10.3390/ijerph18073724

AMA Style

Gómez-Zúñiga B, Pulido R, Pousada M, Armayones M. The Role of Parent/Caregiver with Children Affected by Rare Diseases: Navigating between Love and Fear. International Journal of Environmental Research and Public Health. 2021; 18(7):3724. https://doi.org/10.3390/ijerph18073724

Chicago/Turabian Style

Gómez-Zúñiga, Beni, Rafael Pulido, Modesta Pousada, and Manuel Armayones. 2021. "The Role of Parent/Caregiver with Children Affected by Rare Diseases: Navigating between Love and Fear" International Journal of Environmental Research and Public Health 18, no. 7: 3724. https://doi.org/10.3390/ijerph18073724

Find Other Styles

Note that from the first issue of 2016, MDPI journals use article numbers instead of page numbers. See further details here.

Article Metrics

Abstract views Pdf views Html views

Article Menu

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

Abstract

Share and Cite

Article Metrics

Article Access Statistics

Article Access Map by Country/Region

Further Information

Guidelines

MDPI Initiatives

Follow MDPI