Living with a childhood chronic disease can be challenging, especially if the diagnosis involves a rare condition. This study sought to elucidate how the diagnosis of a rare disease, as compared to a common, chronic condition, may influence maternal experiences of childhood illness. We conducted face-to-face, semi-structured interviews with 26 mothers of children treated in a pediatric hospital in the province of Lecco, Italy. Half of the participants had a child diagnosed with Bartter syndrome (BS), and the rest had a child suffering from celiac disease (CD). Interviews were recorded, transcribed, and analyzed using an inductive thematic approach. We identified three main themes from the analysis of our data: (1) disrupted normality and the need to know, (2) reconstructing normality, and (3) acting “normal.” Although most participants experienced the disclosure of diagnosis as a relief, processes that facilitated normality reconstruction in celiac families, notably access to appropriate information, social support, and personal contact with comparison others, were found to be important stressors for mothers living with BS.Conclusion: This comparative qualitative study provides evidence on how well-known problems associated with the rarity of childhood diseases impact on families’ efforts to cope with the illness and regain a sense of normality.
What is Known:
• Families living with a rare disease have been found to experience a range of common problems, directly linked to the rarity of these pathologies.
What is New:
• Maximization of both emotional and instrumental social support, through provision of appropriate information or establishment of disease-specific support groups, could greatly contribute to rare disease families’ efforts to cope with childhood illness and regain a sense of normality.
Electronic supplementary materialThe online version of this article (10.1007/s00431-017-3085-7) contains supplementary material, which is available to authorized users.
Introduction: International medical graduates (IMGs) represent a large portion of practising doctors in many countries. Many experience difficulties, including higher rates of complaints against them and lower exam pass rates. The UK's General Medical Council (GMC) recently set targets to 'eliminate disproportionate complaints' and 'eradicate disadvantage and discrimination in medical education'. Our timely meta-ethnography aimed to synthesise existing qualitative literature on the wider personal and professional experiences of IMGs to identify factors affecting IMGs' professional practice (either directly or indirectly).Methods: In September 2019, we systematically searched Medline, Embase, Cochrane, PsycINFO, ERIC and EdResearch for peer-reviewed qualitative and mixedmethods articles that described experiences of IMGs. We extracted participant quotes and authors' themes from included articles and used the technique of metaethnography to synthesise the data and develop new overarching concepts.Results: Of the 1613 articles identified, 57 met our inclusion criteria. In total, the articles corresponded to 46 studies that described the experiences of 1142 IMGs practising in all six continents in a range of settings, including primary and secondary care. We developed five key concepts: migration dimensions (issues considered by IMGs when migrating), a challenging start (the stressful early period), degree of dissonance (between the IMG and host country in relation to the four main barriers of language, culture, medical education and belonging), levelling the playing field (interventions to reduce the impact of the barriers) and survive then thrive (adjustments IMGs made). A conceptual model that brings these constructs together in a line of argument is presented.Conclusions: This meta-ethnography, based on a large amount of diverse qualitative studies, is the first to provide a comprehensive picture of the experiences and challenges that IMGs face before and after migration. Our results should be used to guide the development of interventions aiming to support IMGs and meet the GMC targets.
Contrary to the original review, these results suggest that the use of the same intervention is experienced in a totally different way by different PCPs, and that the same elements that are perceived as benefits by some could be viewed as drawbacks by others. Acceptability of interventions is likely to increase if these are context sensitive and take into account PCPs' varying roles and changing priorities.
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