Impact of patient suffering on caregiver well-being: The case of amyotrophic lateral sclerosis patients and their caregivers

Abstract

The impact of patient suffering on family caregivers is an understudied but important topic. This study of patients with amyotrophic lateral sclerosis (ALS) and their caregivers examined the associations of two components of patient suffering: patient physical symptoms, and mental distress, as well as the patient's support for the caregiver, with caregiver well-being. The sample consisted of 52 patients with ALS and their caregivers. Patients and caregivers each completed a structured survey assessing multiple domains including demographics, health, and well-being. Specifically, patients rated their own physical symptoms and mental distress. Caregivers rated their own daily affect, and the extent to which they perceived the patient as supportive. Caregivers also reported whether or not they had found any benefit in dealing with the patient's illness. Regression analyses yielded significant associations of patient distress with caregiver negative affect; patient support was associated with greater caregiver positive affect, and patient symptoms and support were associated with greater likelihood of caregiver benefit finding. There was a significant two-way interaction of patient symptoms by support, namely, benefit finding was not only more likely with greater physical suffering and patient support, but it was also the case that caregivers who perceived the care recipient as unsupportive could only find benefit when this person experienced intense physical suffering. Support interventions for ALS patients and their caregivers should devote particular attention to how caregivers may be affected by witnessing their loved one's sufferings, as well as identify and address challenges in support exchanges between caregivers and patients.

Keywords:

• suffering
• amyotrophic lateral sclerosis
• caregiving
• support

Acknowledgements

This research was supported by grants to the second author from the College of Human Ecology, Cornell University and the Cornell Applied Gerontology Research Institute, Dr. Karl Pillemer, and Dr. Elaine Wethington, Co-Directors, an Edward R. Roybal Center for Translational Research, funded by the National Institute on Aging (5 P50 AG011711-10). We are grateful to the study participants who shared their experiences, and the supervising physician and clinic coordinator for their assistance with this project. We would also like to thank Verena Cimarolli and Brent Gibson for their helpful comments on earlier versions of this manuscript.