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AMYOTROPHIC lateral sclerosis

Palliative care for patients with motor neurone disease and their bereaved carers: a qualitative study

Background: Internationally, it is widely accepted that holistic care is as an integral part of the care for people with motor neurone disease (MND), and their informal carers. However the optimal role of generalist and specialist palliative care, and how it integrates with specialist neurology services, is not fully established. Using a qualitative approach we sought to examine end of life care for people with MND in Northern Ireland, and the role of specialist and generalist palliative care.

Tue, 06/25/2019 - 13:34

Caregiver experience, health‐related quality of life and life satisfaction among informal caregivers to patients with amyotrophic lateral sclerosis: A cross‐sectional study

Aims and objectives This study set out to describe caregiver experience, health‐related quality of life and life satisfaction among informal caregivers to patients with amyotrophic lateral sclerosis and to explore factors associated with caregivers’ health‐related quality of life and life satisfaction. Background Knowledge about factors related to caregivers’ health‐related quality of life and life satisfaction is important for identification of those at risk for ill health and for development of support and care.

Fri, 06/07/2019 - 10:39

Caregiver burden in amyotrophic lateral sclerosis: A systematic review

Background: Informal caregivers of patients with amyotrophic lateral sclerosis experience increased levels of caregiver burden as the disease progresses. Insight in the factors related to caregiver burden is needed in order to develop supportive interventions. Aim: To evaluate the evidence on patient and caregiver factors associated with caregiver burden in amyotrophic lateral sclerosis informal caregivers. Design: A systematic review. Data sources: Four electronic databases were searched up to 2017.

Mon, 04/01/2019 - 10:39

Identifying and addressing the support needs of family caregivers of people with motor neurone disease using the Carer Support Needs Assessment Tool

Objective: Family caregivers of people with motor neurone disease (MND) experience adverse health outcomes as a result of their caregiving experience. This may be alleviated if their support needs are identified and addressed in a systematic and timely manner. The objective of the present study was to assess the feasibility and relevance of the Carer Support Needs Assessment Tool (CSNAT) in home-based care during the period of caregiving from the perspectives of the family caregivers of people with MND and their service providers.

Fri, 03/22/2019 - 19:11

A self-care, problem-solving and mindfulness intervention for informal caregivers of people with motor neurone disease: A pilot study

Background: Informal caregivers of people with motor neurone disease (MND) take on an extensive role. Caregivers are at increased risk of experiencing psychological distress and burden, yet, there is a lack of intervention programmes to support them.; Aim: The aim of this study was to investigate the feasibility and acceptability of a therapeutic group intervention promoting self-care, problem-solving and mindfulness to informal caregivers of people with MND.; Design: Pilot study that utilised a one-arm pre- and post-design.

Mon, 02/18/2019 - 21:58

Support needs of caregivers of patients with amyotrophic lateral sclerosis: A qualitative study

Objective: The aim of this study was to explore the support needs of Dutch informal caregivers of patients with amyotrophic lateral sclerosis (ALS).; Method: Individual semi-structured interviews were conducted with 21 caregivers of ALS patients. Audio-taped interviews were transcribed and data were analyzed thematically. Result A total of four global support needs emerged: "more personal time", "assistance in applying for resources", "counseling", and "peer contact".

Thu, 01/31/2019 - 10:48

Factor analysis of the Zarit Burden Interview in family caregivers of patients with amyotrophic lateral sclerosis

Objective: The Zarit Burden Interview has been used in many studies to assess caregiver burden in family caregivers of patients with amyotrophic lateral sclerosis, but the factor structure of the Zarit Burden Interview in the caregivers of amyotrophic lateral sclerosis patients is unknown. The aim of this study was to explore the factor structure of the Zarit Burden Interview in family caregivers of amyotrophic lateral sclerosis patients using exploratory factor analysis.

Mon, 10/22/2018 - 15:13

Mutual support groups for family caregivers of people with amyotrophic lateral sclerosis in Italy: A pilot study

Family caregivers of people with amyotrophic lateral sclerosis (ALS) live stressful lives in which they spend most of their time caring for their loved ones and managing difficult situations, thereby reducing the time spent in taking care of themselves. This situation may last several years. Previous literature has widely highlighted that this situation reduces caregivers’ quality of life and increases their psychological distress and risk of health problems, but there is a lack of studies that focus on psychological interventions for these situations.

Mon, 09/10/2018 - 12:13

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