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.
Following an ecological perspective, reactions to a disaster—such as the COVID‐19 pandemic—should be analysed in the interdependence between individual and community dimensions. The present study aims to analyse individual emotional dimensions (anxiety, joy, fear or depressive feelings) and their community dimensions (connectedness, emotional sharing and solidarity) with a longitudinal approach among university students from Italian universities. Participants were 746 university students at t1 (during the lockdown) and 361 at t2 (after the lockdown) recruited in six Italian universities from different areas of Italy. Comparing emotional dimensions in the two times, t2 is characterized by a generalized ambiguity: both happiness or joy because of the end of limitations and a kind of ‘post‐lockdown anxiety’ because of a sense of individual inadequacy in facing the return to normality, conducting daily activities and attending community spaces. Data confirms that after the so‐called ‘honeymoon phase’ in community dimensions (first phase of t1 time), a sort of ‘depressive reaction’ arises at t2: Italian university students seem more aware of the need for individual and social responsibility and that many events are not under their personal control. The reconstruction phase and exit from the emergency are perceived as necessary but also as a difficult and risky period. Please refer to the Supplementary Material section to find this article's
Community and Social Impact Statement
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This paper offers a presentation of the characteristics of self-determination theory (SDT) in the health context as well as attempts to identify how this theory could be useful for facing health innovation challenges. Health innovation is based on scientific advances that have more complex relationships with health. This paper encourages the use of the SDT approach to face health innovation, both for physiological and pathological processes. In particular, the focus is on the changes and lifestyle choices related to physiological pregnancy and birth and to oncological genetic tests in the Italian context. The health innovation paradigm focuses on patients taking responsibility for making important health-related choices, and we think that SDT can offer new stimuli in light of the changes implemented from innovations in the field of health. The aim is that this manuscript will stimulate researchers to test the potential of this theory in the field of changing health-related processes. Practitioners are called upon to revise their orientation toward patients and, according to SDT, they should support autonomy rather than control the promotion of health-related change.
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