The Caregiving Experiences of Fathers and Mothers of Children With Rare Diseases in Italy: Challenges and Social Support Perceptions.

Paola Cardinali,Nadia Rania,Laura Migliorini

doi:10.3389/fpsyg.2019.01780

Abstract

Family caregiving is a growing phenomenon with the increased prevalence of chronic illness and shorter hospitalizations. Rare diseases pose significant challenges not only to patients living with these kinds of pathologies but also to those who care for these patients. The caregiving role has specific characteristics. The present work aims to increase knowledge of the challenges that are common or specific to fathers and mothers of children diagnosed with a rare disease. Moreover, the paper analyses the kinds of social support they experience according to gender. A descriptive study was conducted using grounded theory methodology. A semi-structured interview with open-ended questions was conducted with 15 parents of children with a rare disease. The interview was organized into three main areas: personal experiences in caring for a child with a rare disease, family changes and perceived social support. The transcriptions were analyzed using NVivo 11 software. From data analysis, themes emerged regarding the challenges shared by fathers and mothers, but some aspects also emerged that were gender-specific. The analyses of differences between mothers’ and fathers’ narratives showed that there is a specific experience of the impact that caregiving has on parents’ relationships with their jobs and on their worries. Self-help group is the main source of social support for all respondents. We discuss these findings in relation to possible appropriate specific interventions and support for family caregiving.

Highlights

Caring for a child with a disease is a family endeavor; family caregiving is a growing phenomenon in countries throughout the world, as the prevalence of chronic illness and the frequency of shorter hospitalizations increase (Revenson et al, 2015)
This study shows that mothers of children with rare disease refer an high emotional commitment, whereas fathers depict the disease as an obstacle to a “normal” life
This work provides an original contribution to the field to clarify the complexity and the characteristics of caregiving for a child with a rare disease and to explore the specific gender differences regarding this topic

Summary

Introduction

Caring for a child with a disease is a family endeavor; family caregiving is a growing phenomenon in countries throughout the world, as the prevalence of chronic illness and the frequency of shorter hospitalizations increase (Revenson et al, 2015). As caregivers move into their role, they may experience a change in usual practices and a focus on the challenge of being a caregiver. Caregivers may perceive role ambiguity (Gibbons et al, 2014), which may even more occur when they cope with challenges related to a rare disease. Rare diseases are a large heterogeneous group of illnesses that require long-term care. Rare diseases are important public and social issues that pose significant challenges to communities

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Conclusion