Lee, K.C., Yiin, J.J., & Chao, Y.F. (2016). Effect of integrated caregiver support on caregiver burden for people taking care of people with cancer at the end of life: A cohort and quasi-experimental clinical trial. International Journal of Nursing Studies, 56, 17–26. 

To test the effects of an integrative, supportive intervention program for caregivers on caregiver strain and burden

Face to face sessions were done with caregivers to assess categories of caregiver burden, and then individually tailored interventions were provided in 30–40 minute individual sessions every two weeks until the patient expired. Telephone calls were done every other week to provide support and redirection to address areas of strain and burden. The intervention involved education, counseling regarding coping strategies, assistance in findings needed resources, and the provision of respite patient care. Patients in a different ward were allocated to a control group and received usual care. Usual care did not include proactive assessment to determine interventions. Ward assignment to control and intervention groups was done randomly. Participants were recruited when hospitalized and followed longitudinally. Data were collected every two weeks. All participants had access to a 24-hour help line.

• N = 81
• MEAN AGE = 50.7 years
• MALES: 18.5%, FEMALES: 81.5%
• KEY DISEASE CHARACTERISTICS: Various cancer types, with gastrointestinal most prevalent; all were end-stage
• OTHER KEY SAMPLE CHARACTERISTICS: 82% of caregivers lived with the patient, and more than 50% of caregivers spent greater than 16 hours per day caregiving.

• SITE: Single site  
• SETTING TYPE: Multiple settings  
• LOCATION: China

• PHASE OF CARE: End of life care
• APPLICATIONS: Palliative care 

Randomized, controlled, cohort, longitudinal trial

• Caregiver Reaction Assessment Tool (CRAT)
• Heart rate variability via handheld device 
• McCorkle Symptom Distress Scale (MSDS)
• Enforced Social Dependency Scale (ESDS)
• Caregiver Self Efficacy Scale (CSES)

The analysis showed a significant group by time effect for caregiver burden scores (eta square 0.49, p < 0.001) and self-efficacy scores (eta square 0.46, p < 0.001). Those in the intervention group had higher self-efficacy and lower burden. There were no significant differences in patient symptom severity between groups.

The proactive assessment of caregiver stressors and individualized supportive and psychoeducational interventions reduced caregiver strain and burden and increased caregiver self-efficacy.

• Small sample (< 100)
• Risk of bias (no blinding)
• Risk of bias (no appropriate attentional control condition)
• Measurement validity/reliability questionable 
• Findings not generalizable
• Subject withdrawals ≥ 10%  
• Other limitations/explanation: Usual care was not well-defined. It was not clear how many in the control group availed themselves of similar assistance upon request. Multiple repeated measures and possible testing effects existed.

This study demonstrated that purposeful caregiver assessment and individualized planned interventions to support caregivers and work with them regarding their stressors was effective in reducing subjective caregiver strain and burden and improving self-efficacy during the last three months of the patient’s life. This study provided frequent caregiver contact with reassessment, enabling the identification of and response to changing needs.