Caregiver Strain and Symptom Distress Among Cancer Survivors

Abstract and Introduction

Abstract

African Americans are more likely to present in the advanced stages of cancer, but we know very little about the cancer survivorship experiences for them and their caregivers. Guided by the Quality of Life and Symptom Distress Interactional Framework, this descriptive, correlational study examined relationships among caregiver strain, caregivers' quality of life (QoL), survivors' symptom distress, and survivors' QoL among dyads of African American cancer survivors and their primary caregiver. Survivors were recruited in the outpatient department at a comprehensive cancer center and nominated their caregiver who was contacted by phone. Data were collected using the Caregiver Strain Index, the Medical Outcome Survey Short Form 36, the Symptom Distress Scale, and a Demographic Questionnaire. There were 68 survivor-caregiver dyads (N = 136). The average age of the survivors was 52 years compared with 49 years for the caregivers, and the majority was female. Survivors were about 3 years post diagnosis, and the majority was still receiving treatment. Over one-third of the caregivers indicated high levels of strain, and their QoL was lower than the population norm. There were strong relationships between caregiver strain and subscales of the QoL measure. Survivors reported high levels of symptom distress and low QoL. There was a strong relationship between the caregiver strain, symptom distress of the survivor, and survivor QoL. Interventions within palliative care must be culturally specific and address the unmet needs of the survivor and caregiver.

Introduction

There are more than 13.7 million cancer survivors in the United States, but less than 1 million of these are African American. Yet less is known about the survivorship experiences for African Americans survivors and their caregivers. Specifically, there are unanswered questions around the issues of symptom burden, quality of life (QoL), and caregiver strain.

Guided by the Quality of Life and Symptom Distress Interactional Framework, this descriptive, correlational study examines the relationships among caregiver strain, caregivers' QoL, survivors' symptom distress, and survivors' QoL among dyads of African American cancer survivors and their self-identified primary caregiver. Specifically, the following questions are posed:

1. 
   What is the level of strain reported by African American caregivers?
   
2. 
   What is the QoL reported by African American caregivers?
   
3. 
   What is the level of symptom distress reported by African American cancer survivors?
   
4. 
   What is the QoL reported by African American cancer survivors?
   
5. 
   What is the relationship between African American caregivers' strain and their QoL?
   
6. 
   What is the relationship between African American survivors' symptom distress and QoL?
   
7. 
   What are the relationships among caregivers' strain, caregivers' QoL, survivors' symptom distress, and survivors' QoL?