Cited by 288Cancer survivorship and careAmyotrophic Lateral Sclerosis ResearchNursing care and research

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Resilience and Distress Among Amyotrophic Lateral Sclerosis Patients and Caregivers

Rabkin, Judith G., Wagner, Glenn J., Del Bene, Maura·2000·Psychosomatic Medicine

DOI 10.1097/00006842-200003000-00020

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Abstract

OBJECTIVES: The objectives of this study were to assess the prevalence of depressive disorders and symptoms and their correlates in patients with amyotrophic lateral sclerosis (ALS) and caregiver spouses and to identify dimensions of resilience as well as distress. METHODS: Fifty-six patients with ALS and 31 caregivers were interviewed on one occasion, and 20 patients were subsequently reinterviewed during a scheduled medical visit at an ALS center. Major measures included the Structured Clinical Interview for DSM-IV, the Beck Depression Inventory, the Schedule of Attitudes Toward Hastened Death, quality of life, spirituality, and degree of hopelessness. The ALS Functional Rating Scale, spirometry measures of forced vital capacity, and the Karnofsky Performance Index were used to assess physical status. RESULTS: Neither patients nor caregivers displayed significant psychopathology with respect to either current depressive disorders or scores on symptom scales. Depressive symptoms and psychological distress were not related to time since diagnosis, degree of disability, or illness progression during the period of observation. More interest in hastened death was associated with greater distress, but willingness to consider assisted suicide was not. Among caregivers, perceived caregiver burden was significantly associated with finding positive meaning in caregiving. Concordance between patient and caregiver distress was high, suggesting that attention to the mental health needs of caregivers may alleviate the patient's distress as well. CONCLUSIONS: Clinical depression or significant depressive symptomatology is not an inevitable or common outcome of life-threatening illness, even in the presence of major disability.

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Authors: Rabkin, J. G., Wagner, G. J., & Del Bene, M.
Affiliations: Columbia University (US)
NewYork–Presbyterian Hospital (US)
Venue: Psychosomatic Medicine
Publisher: Ovid Technologies (Wolters Kluwer Health)
Published: 2000-03
Volume: 62
Issue: 2
Pages: 271-279
ISSN: 0033-3174 (ISSN-L)
DOI: 10.1097/00006842-200003000-00020
OpenAlex: W1981151802
Cited by: 288
References: 34
Citations by year: 2026: 5 · 2025: 8 · 2024: 4 · 2023: 6 · 2022: 4 · 2021: 6 · 2020: 21 · 2019: 13 · 2018: 9 · 2017: 9 · 2016: 7 · 2015: 14 · 2014: 18 · 2013: 13 · 2012: 13
FWCI: 3.96
Type: journal article
Language: en
Open access: closed
Locations: Psychosomatic Medicine (publishedVersion)
PubMed (publishedVersion)
Topics: Health Sciences › Medicine › Oncology › Cancer survivorship and care
Health Sciences › Medicine › Clinical Neurology › Amyotrophic Lateral Sclerosis Research
Health Sciences › Nursing › Research and Theory › Nursing care and research
Keywords: amyotrophic lateral sclerosis, resilience, psychological distress, depressive symptoms, caregiver burden, assisted suicide, hopelessness, quality of life, spirituality, disease progression, disability
MeSH terms: Adaptation, Psychological, Adult, Aged, Amyotrophic Lateral Sclerosis, Attitude to Health, Depression, Female, Health Services Needs and Demand, Humans, Male, Middle Aged, Prospective Studies, Psychiatric Status Rating Scales, Caregivers, Suicide, Assisted, Karnofsky Performance Status, Disease Progression

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Resilience and Distress Among Amyotrophic Lateral Sclerosis Patients and Caregivers

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