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Euro Huntington's disease network [logo]
EHDN Working Groups - Behavioural Phenotype - Psychological approaches and interventions subgroup -

Background

The presence of Huntington’s disease in a family often has a profound psychological impact. This can mean a constant cycle of adjustment at all stages of the life cycle. Indeed, there is currently no treatment that is able to cure HD, but many of the behavioural or psychological symptoms can be treated adequately with either medication, or psychological interventions or a combination of both. Besides the treatment of symptoms in a patient, the effects of HD in a family are often overwhelming and jeopardize individual development, partner-relationships, family cohesion, and social membership. Therefore, psychological interventions are essential in supporting patients and their families to cope adequately with the many challenges that come with the disease.

Although the problems of HD patients and their families require specific knowledge and experience, many professionals in HD are not familiar with how (available) psychological models and interventions can be used for HD, and when to use them. The WG Psychological Approaches and Interventions (WG-PAI) will address the psychological approaches and therapeutic interventions that can be offered to all involved in HD. The WG-PAI aims to document the different psychological interventions, provide theoretical models for understanding the dynamics in families with HD, propose intervention studies, and develop courses for professionals.

Aims of the subgroup

The primary aims of the EHDN Working Group - Psychological Approaches and Interventions are:
  • documenting the different psychological interventions that can be applied for HD patients, individuals at risk, partner-relationships, and families (e.g. literature search for HD and comparable disorders; clinical experiences of participants)
  • providing theoretical models for understanding the dynamics in families with HD and in healthcare professionals
  • building a framework for recommendations
Secondary aims are:
  • dissemination of the outcomes of the WG
  • developing formats for courses for professionals.
  • proposing intervention studies.

Membership

The Subgroup is led by Dr Jane Simpson and Dr Maria Dale.
Membership is open to social and medical scientists and clinicians with an interest in, and working with structured, intentional psychological interventions.

Representatives from the HD youth organization (HDYO) will be invited to join the WG. The group will meet twice a year, of which usually one time is at the EHDN plenary meeting. The group maintains contact by e-mail communication between the face to face meetings. During these meetings the status and progress of group activities are discussed and members of the working group have the opportunity to present their own projects as well as to propose collaborative projects.

Members of the subgroup have access to the subgroup area on the EHDN website and active members can also upload material at this area for optimal documentation.

Interested people should contact Jane Simpson and Maria Dale ( ), copying in Verena Baake, the Lanco coordinator ( .
 

Lead and Co-Lead facilitator

Dr Jane Simpson
Research Director, Working Group Extern
Lancaster University
Postal address: Lancaster
LA1 4YT Lancaster
U.K.
phone: +44 1524 592858
e-mail: 
Dr Maria Dale
Leicestershire Partnership NHS Trust, Huntington’s Disease Service & Adult Mental Health
Postal address: OSL House, East Link, Meridian Business Park
LE19 1 XU Leicester
U.K.
phone: +44 116 295 3098
e-mail: