Unveiling the invisible: a qualitative interview study on the impact of young onset Parkinson's disease on (ex-partners).

INTRODUCTION: Living with young onset Parkinson's disease (YOPD) not only affects the persons with YOPD, but also their families. Although caregiver burden has been researched in Parkinson's disease in general, little is known about the specific impact of having an (ex-)partner with YOPD. This exploratory study aimed to explore the impact of having an (ex-)partner with YOPD on daily life. MATERIALS AND METHODS: We used a qualitative approach including semi-structured interviews with 16 (ex-)partners of people with YOPD. Interviews were audio-taped and transcribed verbatim. Qualitative thematic analysis was used to analyze the interview data. RESULTS: Qualitative analysis revealed nine themes to describe the impact of having an (ex-)partner with YOPD: (1) Psychosocial impact, (2) Impact on taking care of children, (3) Impact on working life, (4) Impact on intimacy and (sexual) relationships, (5) Impact on daily life, (6) Acceptance and other coping strategies, (7) Thoughts about the future, (8) Autonomy and (9) Caregiver support. DISCUSSION: This study provides important findings that will inform future interventions that aim to reduce or even prevent caregiver burden, as well as to inform healthcare professionals to recognize the needs of caregivers of people with YOPD.

One-health approach as counter-measure against "autoimmune" responses in biosecurity.

This Swine flu pandemic of 2009 and the potential Avian flu threat of 2011-2012 have revived a most challenging debate on protection against infectious diseases. The response to the Swine flu pandemic has been ambivalent, both on the societal (political) and the scientific level. While some scientists warned against potential massive loss of human lives and urged for immediate and large-scale vaccination, others accused them of unnecessary scaremongering, arguing that the pandemic would not be that severe. The lab-created virulent Avian flu virus - which has been created in order to 'fight' a potential Avian flu pandemic - sparked a fierce debate on the dual-use risks of such a pre-emptive strategy. This article involves an analysis of the medical-political response to these recent viral threats using Peter Sloterdijk's immunological framework as diagnostic tool. In his trilogy Spheres Sloterdijk uses immunological concepts to analyse and assess the contemporary biopolitical situation. It shows how drawing a parallel between the functioning of the biological immune system and "immune responses" on socio-political level enables to assess and reconceptualise biosecurity. It demonstrates that ideas such as "nature is the biggest terrorist" - as advanced by many virologists - sometimes result in exaggerated "immunisation responses". This strong defensive attitude sometimes brings about collateral damage. In other words, fierce biosecurity measures sometimes risk developing into "autoimmune" responses that actually destruct the body politic they are meant to protect. By drawing on recent insights in the functioning of the biological immune system it is shown how a One-Health approach that incorporates a broader and nuanced "immunological" repertoire could act as counter-measure against "autoimmune" responses in biosecurity.