The personal experience of parenting a child with Juvenile Huntington’s Disease: perceptions across Europe

The study reported here presents a detailed description of what it is like to parent a child with juvenile Huntington’s 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 Huntington’s disease; living with the disease; other people’s 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

Pleasure, pain and procrastination: reflections on the experience of doing memory-work research

The focus of this paper is the process of doing memory work research. We tell the story of our experience of what it was like to use this approach. We were enthused to work collectively on a ‘discovery’ project to explore a method we were unfamiliar with. We hoped to build working relationships based on mutual respect and the desire to focus on methodology and its place in our psychological understanding. The empirical activities highlighted methodological and experiential challenges which tested our adherence to the social constructionist premise of Haug’s original description of memory-work. Combined with practical difficulties of living across Europe, writing and analyzing the memories became contentious. We found ourselves having to address a number of tensions emanating from the work and our approach to it. We discuss some of these tensions alongside examples that illustrate the research process and the ways we negotiated the collective nature of the memory-work approach