Tag Archives: carers

Huntington’s Disease: normalizing the extraordinary

Mara Tognetti
Mara Tognetti

by Mara Tognetti, Professor of Health Policy at Milan-Bicocca University, Italy

The research project “The community takes care of Huntington’s Disease” – piloted by the Observatory and Methods for Health at the Department of Sociology and Social Research of Milan-Bicocca University and directed by the present author – has conducted free interviews to learn about how health workers and relatives find the task of assisting people with Huntington’s Disease (HD). This is an incurable neuro-degenerative genetic complaint which sets in during the prime of the individual’s life cycle and puts paid to the social and physical existence of patient and family. It places social relations under enormous strain and completely disrupts family, working and social life.

For this reason, and because no kind of therapy yet exists to retard or halt progression, the challenge is both to search for an effective cure and to find ways, from the outset, of supporting those who shoulder the burden: the patient, the family and the health workers.

The research aimed to provide a picture of family needs and difficulties in looking after an HD sufferer. We particularly looked at how caregivers perceive their own requirement for time off for themselves, on the Continue reading Huntington’s Disease: normalizing the extraordinary

New forms of care work in European welfare states

Birgit Pfau Effinger
Birgit Pfau Effinger

by Birgit Pfau-Effinger, Professor of Sociology and Research Director of the Centre for Globalisation and Governance, University of Hamburg, and Professor for Comparative Welfare State Research, Dept. of Political Science and Public Administration, University of Southern Denmark

New welfare state policies for family care work

In the ‘housewife marriage’––the dominant form of the family in most mid-20th century European societies––senior care was mainly organised as unpaid work in the private family household, and was the wife’s duty. Since the 1990s most welfare states have strengthened the attendant social rights and infrastructure to the advantage of senior citizen care provision. As a consequence of this welfare state change, informal, unpaid work in the private sphere of the family has, in part, been transformed into formal, paid care work in the formal employment system outside the family. Several studies have analysed this change in a cross-national perspective (see Pavolini & Ranci, 2008).

It is often overlooked that many welfare states have also extended caring family members’ social rights and support (Ungerson, 2004). They have also introduced new hybrid forms of care work in family care that share some of the main features Continue reading New forms of care work in European welfare states