Coping with Amyotrophic Lateral Sclerosis (ALS): Experiences of Persons Living with ALS and Their Family Caregivers
2024

Coping with Amyotrophic Lateral Sclerosis: Experiences of Patients and Caregivers

Sample size: 20 publication Evidence: low

Author Information

Author(s): Ogugu Everlyne, Tonkikh Orly, Famula Jessica, Young Heather, Bell Janice, Fields Bronwyn, Oskarsson Bjorn

Primary Institution: University of California Davis

Hypothesis

What are the experiences of individuals with ALS and their family caregivers in managing the condition?

Conclusion

The study found that individuals with ALS and their caregivers face significant challenges but can improve coping through support and proactive management.

Supporting Evidence

  • The study identified major stressors related to ALS diagnosis and caregiving.
  • Positive coping strategies included maintaining a positive outlook and seeking support.
  • Instrumental and emotional support from various sources facilitated better coping.

Takeaway

People with ALS and their families have a tough time dealing with the disease, but getting help from others and staying positive can make things better.

Methodology

Qualitative study with 14 in-depth interviews, including 7 persons with ALS and 13 family caregivers.

Limitations

The study's findings are based on a small sample size and may not represent all experiences of ALS patients and caregivers.

Participant Demographics

7 persons with ALS and 13 family caregivers.

Digital Object Identifier (DOI)

10.1093/geroni/igae098.0774

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