Literature DB >> 10125696

Huntington's disease--falling through the net.

J Shakespeare1, J Anderson.   

Abstract

A survey was undertaken in Leicestershire of 25 carers of patients suffering from Huntington's Disease. The needs of families suffering from a late onset hereditary disease cross many service boundaries, thus providing a challenge for service providers. The results of the survey show that the service provision for people caring for patients with this disease are poor, particularly the availability and difficulty in access of some services. Two of the carers' most basic needs were for better residential care for their relatives and access to a source of long-term follow-up.

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Year:  1993        PMID: 10125696

Source DB:  PubMed          Journal:  Health Trends        ISSN: 0017-9132


  5 in total

1.  Further evidence of reliability and validity of the Huntington's disease quality of life battery for carers: Italian and French translations.

Authors:  Aimee Aubeeluck; Julie Dorey; Ferdinando Squitieri; Emilie Clay; Edward J N Stupple; Annunziata De Nicola; Heather Buchanan; Tiziana Martino; Mondher Toumi
Journal:  Qual Life Res       Date:  2012-07-21       Impact factor: 4.147

2.  'All the burden on all the carers': exploring quality of life with family caregivers of Huntington's disease patients.

Authors:  Aimee Victoria Aubeeluck; Heather Buchanan; Edward J N Stupple
Journal:  Qual Life Res       Date:  2011-11-13       Impact factor: 4.147

3.  The emotional experiences of family carers in Huntington disease.

Authors:  Janet K Williams; Heather Skirton; Jane S Paulsen; Toni Tripp-Reimer; Lori Jarmon; Meghan McGonigal Kenney; Emily Birrer; Bonnie L Hennig; Joann Honeyford
Journal:  J Adv Nurs       Date:  2009-02-09       Impact factor: 3.187

4.  Avoidance as a strategy of (not) coping: qualitative interviews with carers of Huntington's Disease patients.

Authors:  Alison Lowit; Edwin R van Teijlingen
Journal:  BMC Fam Pract       Date:  2005-09-14       Impact factor: 2.497

Review 5.  End of life care for long-term neurological conditions: A meta-ethnographic review of the experiences of informal carers.

Authors:  Michael Toze; Mo Ray; Thomas George; Kelly Sisson; David Nelson
Journal:  Palliat Med       Date:  2020-11-25       Impact factor: 4.762

  5 in total

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