Fegg, M.J., Brandstatter, M., Kogler, M., Hauke, G., Rechenberg-Winter, P., Fensterer, V., . . . Borasio, G.D. (2013). Existential behavioural therapy for informal caregivers of palliative patients: A randomised controlled trial. Psycho-Oncology, 22, 2079–2086.

DOI Link

Study Purpose

To evaluate the applicability and effectiveness of existential behavioral therapy (EBT)  to informal caregivers of palliative care patients with regards to psychological distress and quality of life when compared with treatment as usual

Intervention Characteristics/Basic Study Process

The intervention was six group sessions totaling 22 hours. The sessions focused on introductions and mindfulness, death, bereavement and mindfulness, activating resources, finding meaning, self-care and stress management, personal values for (re-)orientation, and moving forward. Sessions were administered in small (10 participants or fewer), closed groups by a trained behavioral therapist following a study manual. Evaluations occurred at baseline, pre- and post-intervention, and at 3- and 12-month follow-up (five time points).

Sample Characteristics

  • N = 133  
  • MEAN AGE = 54.5 years (13.2 years)
  • MALES: 30.1%, FEMALES: 69.9%
  • KEY DISEASE CHARACTERISTICS: Primarily (92.7%) various cancer diagnoses and neurological diseases; six months or less to live; currently in an inpatient palliative care unit
  • OTHER KEY SAMPLE CHARACTERISTICS: German speaking; 61.7% identified as partners, 26.3% as parents, 4% as children, and 12% as other

Setting

  • SITE: Multi-site    
  • SETTING TYPE: Inpatient  
  • LOCATION: Munich, Germany

Phase of Care and Clinical Applications

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

Study Design

  • RCT

Measurement Instruments/Methods

  • Brief Symptom Inventory (BSI) subscales—somatization, anxiety, and depression
  • Quality of life
    • Satisfaction With Life Scale (SWLS)—cognitive aspects
    • World Health Organization Quality of Life (WHOQOL)-BREF
    • Numeric rating scale for quality of life—QOL-NRS (single-item, scale of 1–10)
  • Positive and Negative Affect Scale (PANAS)

Results

EBT showed medium effects at the pre-/immediate post-test evaluation with improvement in anxiety (p 0.006) and on all measures of quality of life (p 0.009, 0.007, < 0.001). At the three-month evaluation, EBT showed no significant effects, with only small effect sizes on one-third of the quality-of-life measure SWLS (p 0.04). However, at the 12-month evaluation, EBT demonstrated medium effects on depression (p 0.04) and QOL-NRS (p 0.002). Interestingly, similar patterns resulted when examining secondary outcomes of affect, with significantly less negative affect demonstrated at post-test (p 0.003), which then was not noted at the three-month evaluation, and at 12 months, significantly less negative affect was measured again (p 0.003). Positive affect, although never significant, always was trending more positive than when compared with controls. High level of satisfaction existed with the group, the therapist, information, mindfulness, and values.

Conclusions

EBT shows promise as an intervention to improve psychological distress and quality of life for carers of patients with cancer at end of life. The effect is greatest immediately following the intervention. Additional work is required with attentional control groups and outpatient patient populations to further support the benefits of this intervention.

Limitations

  • Risk of bias (no appropriate attentional control condition)  
  • Risk of bias (sample characteristics)
  • Intervention expensive, impractical, or training needs
  • Other limitations/explanation: Heterogeneous sample—variety of care types, partners versus relatives and carers of living and dead patients were included in the same groups, meaning that for some, they already were in the grieving process at the start of the intervention. When compared to treatment as usual, which is no intervention, whether EBT or just being part of a group, or having attention of the therapist accounted for the improved outcomes is unclear. Intervention included specially trained behavioral therapist, not nurses.

Nursing Implications

Interventions such as EBT that target informal carers of patients with cancer have the potential to relieve distress and improve quality of life for the carer and the patient.