scholarly journals Psychological flexibility and attitudes toward evidence-based interventions by amyotrophic lateral sclerosis patients

PeerJ ◽  
2019 ◽  
Vol 7 ◽  
pp. e6527
Author(s):  
James R. Pearlman ◽  
Einar B. Thorsteinsson
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Health Care Professionals ◽  
Relational Frame Theory ◽  
Psychological Flexibility ◽  
Well Being ◽  
Evidence Based ◽  
Cross Sectional ◽  
Endoscopic Gastrostomy ◽  
Relational Frame ◽  
Lateral Sclerosis

Objective Declining a percutaneous endoscopic gastrostomy (PEG) or non-invasive ventilation (NIV) by people with amyotrophic lateral sclerosis (ALS) is often contrary to advice provided by health-care-professionals guided by evidence-based principles. This study proposes relational frame theory (RFT) to offer a viable explanation of this phenomenon. Design A total of 35 people (14 female, 21 male) aged between 34 and 73 years, with ALS, participated in this cross-sectional research. Main outcome measures This research examined the predictive power and interaction effect of psychological flexibility (the fundamental construct of RFT) and psychological well-being on attitudes toward intervention options. Results Participants with high psychological flexibility reported lower depression, anxiety, and stress, and higher quality of life. In addition, psychological flexibility was predictive of a participant’s understanding and acceptance of a PEG as an intervention option. Psychological flexibility was not found to be a significant predictor of understanding and acceptance of NIV. Conclusion Although the criterion measure had not been piloted or validated outside of the current study and asks about expected rather than actual acceptance, findings suggest that applied RFT may be helpful for clients with ALS.

Amyotrophic Lateral Sclerosis

2018 ◽  
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Health Care Professionals ◽  
New Technologies ◽  
Neurodegenerative Disorder ◽  
Well Being ◽  
Psychological Well Being ◽  
The Impact ◽  
Lateral Sclerosis

Amyotrophic lateral sclerosis: Understanding and optimizing quality of life and psychological well-being presents a comprehensive and up-to-date review of the enhancement of the lives of people with amyotrophic lateral sclerosis (ALS) and their caregivers. ALS is a progressive, fatal neurodegenerative disorder. No current medical therapy can reverse or stop its progression, and the promotion of quality of life and psychological well-being is a central component of ALS care. Health care professionals who work in this field should incorporate attention to psychological, emotional, and relational aspects of the disease into their approach to care. This book provides some of the knowledge and direction necessary for optimizing the quality of care for individuals with ALS and their caregivers. Topics discussed include an ALS-centred view of quality of life, depressive features, anxiety, resilience, cognitive impairment, complementary and alternative medicines, and psychological research. Specific elements of ALS, such as end-of-life concerns and bulbar dysfunction, are described through the lens of their psychological impact. There is extensive discussion of the development of new psychological treatments, as well as the impact and incorporation of new technologies, with the goal of fostering optimal quality of life and psychological well-being as key parts of a holistic approach to care for the patients and for those who are close to such individuals.

US data on children and youth caregivers in amyotrophic lateral sclerosis

Neurology ◽  
2020 ◽  
Vol 94 (14) ◽  
pp. e1452-e1459 ◽  
Author(s):  
Melinda S. Kavanaugh ◽  
Chi C. Cho ◽  
Megan Howard ◽  
Dominic Fee ◽  
Paul E. Barkhaus
Keyword(s):  
United States ◽  
Amyotrophic Lateral Sclerosis ◽  
Health Care Professionals ◽  
The United States ◽  
Cross Sectional Study ◽  
Family Quality Of Life ◽  
Care Needs ◽  
Cross Sectional ◽  
Young Caregivers ◽  
Lateral Sclerosis

ObjectiveAn estimated 1.4 million young caregivers (<19 years of age) in the United States provide care to ill family members yet remain hidden from state and national caregiving programs and services, including amyotrophic lateral sclerosis (ALS) caregiving services. Given the intensive care needs and acuity of ALS, appreciation of the young caregiver experience within the family context may have a significant impact on patient and family quality of life. This article seeks to identify family and youth caregiver characteristics and perceptions of care through interviews with 38 youth caregivers and their families with ALS.MethodsOnline adult surveys and follow-up youth interviews were conducted with families with ALS across the United States in this cross-sectional study. Participants were accessed through chapters of the ALS Association. Both thematic content analysis and descriptive statistics were used.ResultsYouth caregivers (n = 38) ranged in age from 8 to 18 years and spent an average of 5 h/d providing care for an average of 12 tasks. Persons with ALS relied on youth primarily due to cost and identified complex feelings about relying on youth caregivers, including feeling like a failure, guilty, but proud.ConclusionYouth are intricately involved in all areas of caregiving in ALS. They are isolated and have little training or guidance in care, yet they are able to identify ways to manage their care burden. Results provide clear implications for health care professionals in designing best care and support practices for persons with ALS and their young caregivers.

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