103 research outputs found
Better reporting of interventions : template for intervention description and replication (TIDieR) checklist and guide
Peer reviewedPublisher PD
The personal experience of parenting a child with Juvenile Huntingtonâs Disease: perceptions across Europe
The study reported here presents a detailed description of what it is like to parent a child with juvenile Huntingtonâs disease in families across four European countries. Its primary aim was to develop and extend findings from a previous UK study. The study recruited parents from four European countries: Holland, Italy, Poland and Sweden,. A secondary aim was to see the extent to which the findings from the UK study were repeated across Europe and the degree of commonality or divergence across the different countries. Fourteen parents who were the primary caregiver took part in a semistructured interview. These were analyzed using an established qualitative methodology, interpretative phenomenological analysis. Five analytic themes were derived from the analysis: the early signs of something wrong; parental understanding of juvenile Huntingtonâs disease; living with the disease; other peopleâs knowledge and understanding; and need for support. These are discussed in light of the considerable convergence between the experiences of families in the United Kingdom and elsewhere in Europe
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