Clinical Issues for Working With Patients and Family Members Dealing With Amyotrophic Lateral Sclerosis

Cornwell, Connie S.

doi:10.1080/08975353.2016.1136547

Journal of Family Psychotherapy

2016

DOI: 10.1080/08975353.2016.1136547

|View full text |Cite

Clinical Issues for Working With Patients and Family Members Dealing With Amyotrophic Lateral Sclerosis

Connie S. Cornwell

Help me understand this report

Search citation statements

Order By: Relevance

Paper Sections

Select...

Citation Types

Supporting

Mentioning

Contrasting

Year Published

2020

2024

Publication Types

Select...

Article2

Relationship

Self Cite0

Independent2

Authors

Journals

Cited by 2 publications

References 5 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

Working with people living with motor neurone disease and the impact on professionals’ emotional and psychological well-being: A scoping review

Walls,

Claffey,

Mockler

et al. 2024

Palliat Med

View full text Add to dashboard Cite

Background: Integrated multidisciplinary care is required to manage the progressive and debilitating symptoms associated with motor neurone disease. Professionals can find providing the level of care required by this population clinically and emotionally challenging. To support those working with these patients it is important to understand the experience of the entire multidisciplinary team involved and the impact of working with motor neurone disease on their emotional and psychological well-being. Aim: To identify what is known about (1) healthcare professionals’ experience of working with motor neurone disease and (2) the impact of this work on their emotional and psychological well-being. Design: Scoping review. Review protocol registered on Open Science Framework. Sources: Five electronic databases were searched in January 2023 and 2024. Grey literature and hand searches were completed. Results: Fifty-one sources published between 1990 and 2023 were included. A total of 1692 healthcare professionals are represented. Three main categories were identified: (1) The demands of providing motor neurone disease care. (2) Factors influencing professionals’ ability to provide desired levels of care. (3) The emotional impact of working with motor neurone disease. Subcategories are depicted within these. Conclusion: Positive experiences included job satisfaction, enhanced perspective and receiving gratitude, while negative implications such as stress, emotional exhaustion and burnout also featured. The demands of motor neurone disease patient care, the organisation of services and resources required to meet patient and family needs and the emotional burden for professionals involved, warrant greater recognition in clinical practice, guidelines and future research.

show abstract

Working with people living with motor neurone disease and the impact on professionals’ emotional and psychological well-being: A scoping review

Walls,

Claffey,

Mockler

et al. 2024

Palliat Med

View full text Add to dashboard Cite

show abstract

Medical Assistance in Dying (Maid)

Amurao¹

2020

cswr

View full text Add to dashboard Cite

Medical Assistance in Dying (MAID) is a legal federal framework for medical practitioners to assist in the cessation of life upon request from eligible patients who seek assisted death in order to die peacefully and with dignity. MAID’s ‘mentally competent’ eligibility criteria currently create confusion for social workers because they provide little guidance on how to best implement the desired practices intended to support the aims of MAID. Secondly, current criteria pose challenges for vulnerable populations, particularly patients with amyotrophic lateral sclerosis (ALS). ALS patients who are deemed mentally incapable are denied access to MAID, suffering in pain every day until they die. Canada’s MAID policy infringes on their autonomy, and removes their choice to die with dignity. This injustice calls for further reconsideration of the ways MAID can be reformed to serve dying Canadians who are falling through the cracks of MAID. Policy recommendations include inclusion of advanced directives and substitute decision makers. Due to this unequal access in health care services, this concern constitutes a social work issue. Recommendations for social work include increasing competency, and advocacy regarding the provision of MAID.

show abstract

scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.

Contact Info

customersupport@researchsolutions.com

10624 S. Eastern Ave., Ste. A-614

Henderson, NV 89052, USA

This site is protected by reCAPTCHA and the Google Privacy Policy and Terms of Service apply.

Blog Terms and Conditions API Terms Privacy Policy Contact Cookie Preferences Do Not Sell or Share My Personal Information

Made with 💙 for researchers

Part of the Research Solutions Family.

Clinical Issues for Working With Patients and Family Members Dealing With Amyotrophic Lateral Sclerosis

Cited by 2 publications

References 5 publications

Working with people living with motor neurone disease and the impact on professionals’ emotional and psychological well-being: A scoping review

Working with people living with motor neurone disease and the impact on professionals’ emotional and psychological well-being: A scoping review

Medical Assistance in Dying (Maid)

Contact Info

Product

Resources

About