'I have a feeling I can't speak to anybody': A thematic analysis of communication perspectives in people with Huntington's disease

N Zarotti, J Simpson, I Fletcher - Chronic Illness, 2019 - journals.sagepub.com
Objectives This study explored the perspectives of people affected by Huntington's disease
(HD) on their own communicative abilities. Methods Qualitative semi-structured interviews …

Speech and language difficulties in Huntington's disease: A qualitative study of patients' and professional caregivers' experiences

TN Grimstvedt, JU Miller… - … Journal of Language …, 2021 - Wiley Online Library
Background Huntington's disease (HD) is a neurodegenerative disease characterized by a
triad of motor, cognitive and psychological symptoms, leading to a gradual breakdown of …

Communication and Huntington's disease: qualitative interviews and focus groups with persons with Huntington's disease, family members, and carers

L Hartelius, M Jonsson, A Rickeberg… - International journal of …, 2010 - Wiley Online Library
Background: As an effect of the cognitive, emotional and motor symptoms associated with
Huntington's disease, communicative interaction is often dramatically changed. No study …

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

A Lowit, ER Van Teijlingen - BMC Family Practice, 2005 - Springer
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 …

Under a cloud: carers' experiences of Huntington's disease

A Mantell - Social Care and Neurodisability, 2010 - emerald.com
This paper explores the unique blend of social, emotional and practical issues faced by
family members of people with Huntington's disease (HD), highlighting how social workers …

Facilitators and barriers in caring for a person with Huntington's disease: input for a remote support program

MMJ Daemen, LMM Boots, M Oosterloo… - Aging & Mental …, 2024 - Taylor & Francis
Objectives This study aims to provide more insight into possible barriers and facilitators
caregivers of people with Huntington's disease (HD) encounter, and what their needs and …

Living with Huntington's disease: Illness perceptions, coping mechanisms, and patients' well‐being

DI Helder, AA Kaptein… - British journal of …, 2002 - Wiley Online Library
Objectives: To describe the illness perceptions and coping mechanisms of patients with
Huntington's disease (HD), and to assess their role in the well‐being of these individuals …

Interaction in conversation in Huntington´ s disease: An activity-based analysis and the conversation partner's view of change

C Saldert, E Eriksson, K Petersson… - Journal of …, 2010 - journal.equinoxpub.com
This study explores how conversational interaction is affected in a progressive neurological
disease and what changes in the communication are reported by significant others in a …

Nursing approaches and perceived quality of life in advanced stage Huntington's disease patients

J Engels, E van Duijn - Journal of Huntington's Disease, 2022 - content.iospress.com
Background: Long-term Huntington's disease (HD) care is offered in specialized inpatient
nursing home units with a focus on individually perceived quality of life (QoL). This is shaped …

“I have to start learning how to live with becoming sick”: A scoping review of the lived experiences of people with Huntington's disease

S Mahmood, S Law, Y Bombard - Clinical Genetics, 2022 - Wiley Online Library
Person‐centered care (PCC) is recognized as a key component of the delivery of quality
healthcare and a model for healthcare systems worldwide. The experience of illness through …