Belgacem, B., Auclair, C., Fedor, M.C., Brugnon, D., Blanquet, M., Tournilhac, O., & Gerbaud, L. (2013). A caregiver educational program improves quality of life and burden for cancer patients and their caregivers: A randomised clinical trial. European Journal of Oncology Nursing, 17, 870–876.

DOI Link

Study Purpose

To examine the effectiveness of a caregiver educational program on caregiver and patient quality of life and caregiver burden

Intervention Characteristics/Basic Study Process

Researchers and 157 study doctors and nurses defined and validated via a Delphi method a list of nursing care tasks for patients with cancer. These tasks were divided into four categories—meal support, nursing care, symptom management, and welfare care—for caregiver bedside teaching to intervention group patient-caregiver dyads. Validated educational pamphlets for each task category guided step-by-step nurse teaching to meet individual caregiver learning for independent provision of care to an ill family member. The healthcare team provided task education specific to each patient’s needs and agreed upon by caregiver, patient, and members of the healthcare team. Educational interventions adhered to a four-step process to minimize error and maintain intervention integrity. Patient and caregiver quality of life and caregiver burden were measured before the educational program and one to three months afterward. Patient satisfaction also was measured 15 days post-first evaluation and at the last evaluation.  

Sample Characteristics

  • N = 67
  • MEAN AGE = 59.6 years
  • MALES: 41.5%, FEMALES: 58.5%
  • KEY DISEASE CHARACTERISTICS: Patients had hematologic cancer (e.g., leukemia, lymphoma, myelodysplastic syndrome) or other oncologic illness and received care for at least five weeks
  • OTHER KEY SAMPLE CHARACTERISTICS: 61.5% were spousal caregivers, and 16.9% were “offspring” caregivers; patients agreed to have their main caregiver involved in the study, and patients had approval for study participation from the doctor/psychological dyad

Setting

  • SITE: Six acute care units, five different settings  
  • SETTING TYPE: Multi-site  
  • LOCATION: Clermont-Ferrand, France

Phase of Care and Clinical Applications

  • PHASE OF CARE: Active treatment

Study Design

  • Randomized, controlled trial
    • Patient-caregiver dyads were assigned to the experimental or control group using randomization software

Measurement Instruments/Methods

  • SF-36 health survey (patients and caregivers self-administered)—used to assess eight health dimensions
  • Zarit Burden Scale (caregivers self-administered)—used to assess three dimensions of burden
  • Questionnaire for satisfaction of hospitalized patients (patient self-administered)—used to assess eight factors related to scope of hospital experience

Results

No difference was seen in quality of life scores between the control (N = 34) and experimental (N = 33) patient-caregiver dyad groups at the first testing. Evaluation (pre- and post-test scores) supported improved quality-of-life scores in the experimental group patient-caregiver dyads as compared to those in the control group. Patients in the experimental group showed significant improvement on two of six dimensions (physical role [p = 0.039] and general health [p = 0.037] on the quality-of-life measure. Experimental group caregivers showed significant improvement on six of eight dimensions (physical role, emotional role, vitality, mental health, social functioning, and general health, all p < 0.05) on the quality-of-life measure. The average score of burden of care in the experimental group (M = 16, SD = 9.9) was significantly lower than that of control group (M = 31.4, SD = 14.9) at last evaluation (p < 0.001). Evolution scores for burden also showed significantly (p = 0.004) less perceived burden among experimental group caregivers as compared to control group caregivers. Patient satisfaction scores of patients in the experimental and control groups showed no difference, except patients in the experimental group showed a significant improvement in relationship with nurses (p = 0.037) because of program involvement.

Conclusions

Nurse-provided educational interventions tailored to caregiver needs and patient expectations may minimize caregiver burden and improve patient and caregiver quality of life. These interventions, if provided during patients’ acute setting care, may pave the way for more effective patient home care by informed and involved caregivers.

Limitations

  • Small sample (less than 100)
  • Risk of bias (no blinding)
  • Risk of bias (no appropriate attentional control condition)
  • Findings not generalizable
  • Other limitations/explanation: Authors acknowledge strict inclusion and exclusion criteria that influenced the loss of 110 of 265 participants initially assessed for the study. Author conclusions note a need for a less rigorous program to meet patient and caregiver needs for those who do not meet more stringent criteria found in an RCT used in this study. Whether nurses who were members of the research team delivered the intervention and could connect knowledge of individual patients/caregivers to study results is unclear. Which of the four teaching categories influenced caregiver quality of life and burden the most also is unclear.

Nursing Implications

Nurses who deliver evidence-based, tailored educational interventions to family cancer caregivers may increase patient-caregiver quality of life and minimize caregiver burden during cancer care. Stronger nurse-patient relationships, based on interaction during caregiver task teaching, may facilitate patient care satisfaction and coping during the cancer experience.