A Bowling

A Tibben

Alison Lowit

ASC Brouwer-Dudok de Wit

C Pasetti

C Pope

Carers National Association

E Teijlingen van

E van Teijlingen

Edwin R van Teijlingen

H Skirton

HR Boeije

HW Krohne

J Cheung

J Gilbert

J Korer

J Shakespeare

K Forrest

K Forrest Keenan

K McGarva

M Bloch

M Culley

MB Hans

PS Harper

R Yale

RW Oliver

S Kessler

SE Folstein

SL Wade

T Rapley

U Flick

BMC Family Practice

English

PubMed

Abstract Background Since Huntington's Disease (HD) is a familial disease with an average onset in the mid-thirties, one might expect that spousal carers are concerned with providing care for off-spring who may turn out to be affected. Methods This study involved ten face-to-face interviews with carers of spouses affected by HD in Northeast Scotland. Carers were recruited through two channels: a genetic clinic and the Scottish Huntington's Association (SHA). Interviews were conducted in carers' own homes. A thematic analysis of the transcripts was conducted. Results Although carers did worry about their children, they did not envisage being involved in their care. Many avoided talking about the disease, both within and outwith their family; this may have greatly reduced the level of support provided by family members. Conversely, avoidance was often accompanied by symptom-spotting. For example, several people had given up driving, before they were incapable of doing so. The explanation appears to be that they avoided getting into situations in which HD may express itself. Support meetings seem to be valued amongst patients with other serious diseases and their carers, however, although all participants had had contact with the SHA, only one regularly attended meetings. It was felt that seeing others with HD provided a constant reminder of the possible effect of HD on the wider family, which seemed to outweigh the benefit of attending. Overall, the analysis highlighted 'avoidance' as a key theme. Conclusion Many denied symptoms of HD in their spouses, pre-diagnosis. All had pretended at some point that it was not happening, through ignoring early signs and 'obvious' symptoms. Some partners had refused to go to the doctor until it was no longer possible to deny symptoms. Formal health and social care seemed to play a very small role compared to informal care arrangements.</p

van Teijlingen Edwin R

Lowit Alison

Directory of Open Access Journals

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

Lowit, Alison

Van Teijlingen, Edwin R

Aberdeen University Research

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

van Teijlingen, Edwin R.

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An Introduction to Qualitative Research.

Association: Speak Up, Speak Out, Listen to Carers London: Issue Communications Ltd;

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Caregiving and Parkinson's Disease. Neurol Sci

E: To tell or not to tell: barriers and facilitators in family communication about genetic risk. Clin Genet

Fitzsimmons JS: The effect of Huntington's Chorea on family life.

Forgotten person in the Huntington's Disease family.

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Huntington's Chorea – a family problem.

Huntington's Disease – community care? A carer's tale.

Huntington's Disease – seldom seen, seldom heard? Health Bull (Edinb)

Huntington's Disease-falling through the net. Health Trends

Huntington's Disease: A Disorder of Families.

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Interviews. In Qualitative Research Practice Edited by: Seale

MR: Predictive testing for Huntington's Disease in Canada: the experiences of

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Research Methods in Health: Investigating Health and Health Services.

Rooijmans HG, Verhage F: Presymptomatic DNA testing for Huntington disease: identifying the need for psychological intervention.

Service use and needs of people with Motor Neurone Disease and their carers in Scotland. Health Soc Care Community

Stancin T: The Relationship of Caregiver Coping to Family Outcomes during the Initial Year following Peadiatric Traumatic Injury. J Consult Clin Psychol

The Nature Caring Aberdeen: Voluntary Services Aberdeen,

The range of qualitative research methods in family planning and reproductive health care. J Fam Plann Reprod Health Care

Tibben A: A hereditary disorder in the family and the family lifecycle: Huntington's Disease as a paradigm. Fam Process

Verhage F: Presymptomatic DNA-testing for Huntington disease: Pretest attitudes and expectations of applicants and their partners in the Dutch program.

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http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1236919

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

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Directory of Open Access Journals

Aberdeen University Research

Aberdeen University Research

Springer - Publisher Connector

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