Navigating between love and fear

Dual role of parent & caregiver for children with disability

The parents of children with rare diseases face exceptional circumstances which influence their role as parents. They need trust and to overcome fear in order to live without overwhelming anxiety.

Their children require so much time, attention, physical and emotional energy that the parents “have and perceive a much greater burden than that typically associated with raising children. Trust allows them to confront the situation with a more positive outlook,” said Dr. Gómez-Zúñiga, who explained that it is not just a question of trusting in the doctors, but also of trusting in your own strength, that you will have enough energy for daily life, in the suitability of the treatment, in the adequacy of the resources available or in the effectiveness of the support received by other parents in similar circumstances.

Diagnosis was found to be the turning point in a long process of achieving this trust which allows the role of parent/caregiver to be confronted without high levels of stress, fatigue, insecurity or uncertainty.


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.

SOURCE:  Int J Environ Res Public Health. 2021 Apr 2;18(7):3724. doi: 10.3390/ijerph18073724. PMID: 33918362

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

Beni Gómez-Zúñiga  1 Rafael Pulido  2 Modesta Pousada  1 Manuel Armayones  3

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

2. Education Department, Universidad de Almería, 04120 Almería, Spain.

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

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Trust is key for the parents of children with rare diseases to live without anxiety

by Beatriz González, Universitat Oberta de Catalunya

May 27, 2021

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