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

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

IJERPH, 2021, vol. 18, issue 7, 1-20

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.

Keywords: caregiver; parent; rare disease; chronic disease; qualitative research; role experience (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2021
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