A 10-year literature review of family caregiving for motor neurone disease: moving from caregiver burden studies to palliative care interventions

SM Aoun, B Bentley, L Funk, C Toye… - Palliative …, 2013 - journals.sagepub.com
Background: There is growing awareness that different terminal diseases translate into
different family caregiver experiences, and the palliative and supportive care needs of these …

Factors to consider for motor neurone disease carer intervention research: a narrative literature review

C Gluyas, S Mathers, NH Anderson… - Palliative & supportive …, 2017 - cambridge.org
Objective: The experience of caregiving in the context of motor neurone disease (MND) is
extremely challenging. Over the past 15 years, quantitative and qualitative studies have …

What are the roles of carers in decision-making for amyotrophic lateral sclerosis multidisciplinary care?

A Hogden, D Greenfield, P Nugus… - Patient preference and …, 2013 - Taylor & Francis
Purpose Family carers of patients with amyotrophic lateral sclerosis (ALS) are presumed to
have frequent involvement in decision-making for symptom management and quality of life …

Navigating an emotional journey: A qualitative study of the emotional experiences of family carers currently supporting people living with motor neurone disease

AP Trucco, E Mioshi, N Kishita, C Barry… - Palliative & Supportive …, 2023 - cambridge.org
BackgroundFamily carers of people living with motor neurone disease (MND) face
continuous changes and losses during the progression of the disease, impacting on their …

The development of the UK National Institute of Health and Care Excellence evidence-based clinical guidelines on motor neurone disease

D Oliver, A Radunovic, A Allen… - … Lateral Sclerosis and …, 2017 - Taylor & Francis
The care of people with motor neuron disease/amyotrophic lateral sclerosis is often complex
and involves a wide multidisciplinary team approach. The National Institute for Health and …

“A monster that lives in our lives”: experiences of caregivers of people with motor neuron disease and identifying avenues for support

NH Anderson, C Gluyas, S Mathers… - BMJ Supportive & …, 2019 - spcare.bmj.com
Background A developing body of evidence has provided valuable insight into the
experiences of caregivers of people with motor neuron disease; however, understandings of …

Education requirements for nurses working with people with complex neurological conditions: Relatives' perceptions

MJ Baker - Nurse Education in Practice, 2011 - Elsevier
This paper reports on the exploration of relatives' perceptions about the need for education
and training of nurses (registered nurses and healthcare assistants) who work with people …

Living well: exploring experiences of carers of people with motor neurone disease attending an early-access support group

J Derbyshire, J Atkinson, Y Dunn… - International Journal of …, 2023 - magonlinelibrary.com
Background/Aims Motor neurone disease is associated with rapid disease progression and
disability, and receiving a diagnosis can cause shock and fear in the patient and their carers …

Att vara närstående till en person som drabbats av” den värsta tänkbara sjukdomen”, ALS

M Hermansson, D Lindström - 2023 - diva-portal.org
Bakgrund: Amyotrofisk lateralskleros (ALS) är en obotlig sjukdom som bryter ned de perifera
och centrala motoriska nervcellerna i nervsystemet och har ett dödligt utfall. Närstående får …

Entscheidungen von Patienten und deren Proxy bezüglich existentieller Fragestellungen und Shared Decision Making im Rahmen der Amyotrophen Lateralsklerose

A Ammann - 2022 - oparu.uni-ulm.de
Die amyotrophe Lateralsklerose (ALS) ist die häufigste adulte neurodegenerative
Motoneuronenerkrankung und führt zu weitreichenden Einschränkungen der physischen …