Literature DB >> 8291568

Forgotten person in the Huntington disease family.

S Kessler1.   

Abstract

Although spouses play a major role in managing the care of persons affected with Huntington disease (HD), often at the price of subordinating their own aspirations and needs, little or no professional attention has been given to them in the HD literature. Such factors as secrets kept from the spouse, the early age-of-onset of symptoms, gender, and the coping strategies employed by spouses of affected persons are discussed and illustrated. Also, the impact of predictive testing for HD on spouses of persons undergoing testing is briefly touched on.

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Year:  1993        PMID: 8291568     DOI: 10.1002/ajmg.1320480306

Source DB:  PubMed          Journal:  Am J Med Genet        ISSN: 0148-7299


  16 in total

1.  Huntington disease: families' experiences of healthcare services.

Authors:  Heather Skirton; Janet K Williams; J Jackson Barnette; Jane S Paulsen
Journal:  J Adv Nurs       Date:  2010-03       Impact factor: 3.187

2.  Psychological functioning before predictive testing for Huntington's disease: the role of the parental disease, risk perception, and subjective proximity of the disease.

Authors:  M Decruyenaere; G Evers-Kiebooms; A Boogaerts; J J Cassiman; T Cloostermans; K Demyttenaere; R Dom; J P Fryns
Journal:  J Med Genet       Date:  1999-12       Impact factor: 6.318

3.  Preparing for presymptomatic DNA testing for early onset Alzheimer's disease/cerebral haemorrhage and hereditary Pick disease.

Authors:  A Tibben; M Stevens; G M de Wert; M F Niermeijer; C M van Duijn; J C van Swieten
Journal:  J Med Genet       Date:  1997-01       Impact factor: 6.318

4.  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

5.  Family carer personal concerns in Huntington disease.

Authors:  Janet K Williams; Heather Skirton; James Jackson Barnette; Jane S Paulsen
Journal:  J Adv Nurs       Date:  2011-06-12       Impact factor: 3.187

Review 6.  Palliative Care for Movement Disorders.

Authors:  Christina L Vaughan; Benzi M Kluger
Journal:  Curr Treat Options Neurol       Date:  2018-02-21       Impact factor: 3.598

7.  '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

8.  Psychological distress in applicants for predictive DNA testing for autosomal dominant, heritable, late onset disorders. The Rotterdam/Leiden Genetics Workgroup.

Authors:  A C DudokdeWit; A Tibben; H J Duivenvoorden; P G Frets; M W Zoeteweij; M Losekoot; A van Haeringen; M F Niermeijer; J Passchier
Journal:  J Med Genet       Date:  1997-05       Impact factor: 6.318

9.  Patient-reported outcome measures in Huntington disease: Quality of life in neurological disorders (Neuro-QoL) social functioning measures.

Authors:  Noelle E Carlozzi; Elizabeth A Hahn; Siera M Goodnight; Anna L Kratz; Jane S Paulsen; Julie C Stout; Samuel Frank; Jennifer A Miner; David Cella; Richard C Gershon; Stephen G Schilling; Rebecca E Ready
Journal:  Psychol Assess       Date:  2017-05-29

10.  Role of the disease in the psychological impact of pre-symptomatic testing for SCA2 and FAP ATTRV30M: Experience with the disease, kinship and gender of the transmitting parent.

Authors:  Milena Paneque; Carolina Lemos; Alda Sousa; Luis Velázquez; Manuela Fleming; Jorge Sequeiros
Journal:  J Genet Couns       Date:  2009-10       Impact factor: 2.537

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