Cited by 123Nursing care and researchAmyotrophic Lateral Sclerosis ResearchFamily Caregiving in Mental Illness

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Predictors of psychological distress in carers of people with amyotrophic lateral sclerosis: a longitudinal study

GOLDSTEIN, L. H., ATKINS, L., LANDAU, S., BROWN, R., LEIGH, P. N.·2006·Psychological Medicine

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Abstract

Background. The majority of people providing informal care for people with amyotrophic lateral sclerosis (ALS) are spouses. This prospective study set out to examine changes in and predictors of psychological distress in spouse carers of people with ALS. Method. Fifty spouse carers of people with ALS underwent an initial interview and at least 21 underwent two further interviews, at median intervals of approximately 5–6 months. They rated the functional impact of their partner's ALS on everyday activities and everyday cognitive, emotional and behavioural changes that might have occurred in the person with ALS. They also rated their own social support and marital relationship, and completed measures of mood, burden and strain. The ALS Severity Scale was also completed for their partner with ALS. Results. Over time, carers' psychological distress (a global measure combining mood, burden and strain) increased significantly. Initially carers' psychological distress was best predicted by the psychosocial impact of their spouse/partners' ALS, the extent to which their partner demonstrated emotional lability and how many other people were considered as dependents of the carer. Subsequently, carer distress was best predicted by an initial measure of negative social support and by their initial satisfaction with their social relationships. Conclusions. Despite the significant physical impairment associated with ALS, psychosocial factors appear important in determining short- and longer-term psychological well-being in carers of people with ALS and may help clinicians to predict which carers are likely to experience psychological difficulties as part of their caring role.

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Authors: GOLDSTEIN, L. H., ATKINS, L., LANDAU, S., BROWN, R., & LEIGH, P. N.
Affiliations: King's College London (GB)
ORCID: GOLDSTEIN, L. H.
ATKINS, L.
LANDAU, S.
BROWN, R.
LEIGH, P. N.
Venue: Psychological Medicine
Publisher: Cambridge University Press (CUP)
Published: 2006-02-21
Volume: 36
Issue: 6
Pages: 865-875
ISSN: 0033-2917 (ISSN-L)
1469-8978
DOI: 10.1017/s0033291706007124
OpenAlex: W2044553216
Cited by: 123
References: 31
Citations by year: 2025: 5 · 2024: 2 · 2023: 6 · 2022: 5 · 2021: 7 · 2020: 10 · 2019: 6 · 2018: 6 · 2017: 5 · 2016: 10 · 2015: 7 · 2014: 8 · 2013: 7 · 2012: 8
FWCI: 12.40
Type: journal article
Language: en
Open access: closed
Licence: www.cambridge.org/core/terms (unspecified)
Locations: Psychological Medicine (publishedVersion)
PubMed (publishedVersion)
UCL Discovery (University College London) (submittedVersion)
Research Portal (King's College London) (submittedVersion)
Topics: Health Sciences › Nursing › Research and Theory › Nursing care and research
Health Sciences › Medicine › Clinical Neurology › Amyotrophic Lateral Sclerosis Research
Social Sciences › Psychology › Clinical Psychology › Family Caregiving in Mental Illness
Keywords: amyotrophic lateral sclerosis, psychological distress, informal care, caregiver burden, emotional lability, social support, marital relationships, predictors of distress, psychosocial impact, caregiver well-being
MeSH terms: Aged, Aged, 80 and over, Amyotrophic Lateral Sclerosis, Depressive Disorder, Major, Major Depressive Disorder, Female, Humans, Longitudinal Studies, Male, Middle Aged, Predictive Value of Tests, Prognosis, Prospective Studies, Psychology, Caregivers, Cost of Illness

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Predictors of psychological distress in carers of people with amyotrophic lateral sclerosis: a longitudinal study

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