Holm, M., Arestedt, K., Carlander, I., Furst, C.J., Wengstrom, Y., Ohlen, J., & Alvariza, A. (2015). Short-term and long-term effects of a psycho-educational group intervention for family caregivers in palliative home care: Results from a randomized control trial. Psycho-Oncology. Advance online publication. 

DOI Link

Study Purpose

To measure the long- and short-term effects of a group family cancer caregiver psychoeducational intervention delivered in palliative home care settings on caregiver preparedness, health perception, anxiety, reward, burden, and depression

Intervention Characteristics/Basic Study Process

Study caregivers meeting inclusion criteria received random assignments to the psychoeducational or control group, which received standard care support. The former group participated in theoretically based, weekly afternoon group sessions delivered by an interdisciplinary team in a palliative care setting to increase caregiver preparedness for family member palliative care needs. Each session lasted two hours per week over a three-week period. The use of a session manual ensured consistent structure and content presentation to all groups. Content included patient symptom management, daily nutritional care, caregiver support, and existential issues related to family member diagnoses. Both control and intervention groups received standard care from patient palliative care settings. Data collection occurred for both groups at baseline, the end of the intervention, and two months after the intervention.

Sample Characteristics

  • N = 194    
  • AVERAGE AGE = 61.5 years
  • MALES: 34%, FEMALES: 66%
  • KEY DISEASE CHARACTERISTICS: Overall, 90% of the patient sample had cancer with a life expectancy of at least five weeks to allow intervention completion.
  • OTHER KEY SAMPLE CHARACTERISTICS: In total, 90% of caregivers attended two or three sessions, 74% were married, almost half were employed or retired, and more than half lived with the patient. Spouses were the recipients of the caregiver intervention in 48% of study participants.

Setting

  • SITE: Multi-site    
  • SETTING TYPE: Home    
  • LOCATION: Ten specialized palliative home care settings in metropolitan Sweden

Phase of Care and Clinical Applications

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

Study Design

Randomized, unblided, controlled trial consistent with the Consolidated Standards of Reporting Trials

Measurement Instruments/Methods

  • Preparedness for Caregiving Scale (PCS): Assesses degree of caregiver-perceived ability to provide family member with palliative care; good validity, reliability and internal consistency
  • Caregiver Competence Scale (CCS): Assesses caregiver-perceived degree of competency; reflects high internal consistency
  • Rewards of Caregiving Scale (RCS): Measures caregiver degree of perceived rewards of caregiving; reflects high internal consistency
  • Caregiver Burden Scale (CBS): Measures five aspects of strain, isolation, emotional response and context of care; reflects high internal consistency
  • Health Index: Measures degree of caregiver perceived health; high internal consistency
  • Hospital Anxiety and Depression Scale (HADS): Measures degree of experiencing those concepts in palliative care; high Cronbach’s alpha scores on two subscales

Results

The study had 21 intervention sessions programs with an average of four caregivers per session. The mean age of the 175 patients in the study was 72 years, and greater than half of the sample was female and enrolled in Swedish palliative homecare for a median time of four months. In the first caregiver follow-up, the intervention group had significant increases in preparedness (p = 0.041) and caregiving competency (p = 0.001) from baseline as compared to control group (p = 0.041 by simple linear regression analysis). The second follow-up showed significantly higher intervention group scores on caregiver preparedness as compared to the control group (p = 0.12). No other significant findings for caregiving competency, rewards, burden, health, anxiety, or depression were found.

Conclusions

This study’s psychoeducational intervention showed significant improvements in caregivers’ preparedness in short- and long-term measurements and in caregivers’ perceived competency in the short-term. The nature of the intervention (three weeks) may have minimized significant effects on caregiver preparedness, competence, and rewards of caregiving compared to longer, previously published, six-session interventions that found such effects. No negative intervention effects occurred although other caregiver variables did not improve under investigation. Baseline data indicated that caregivers had low to moderate levels of burden, depression, and anxiety, and they had positive health perceptions that may have indicated that a short-term intervention would have a limited effect.

Limitations

  • Risk of bias (no blinding)
  • Subject withdrawals ≥ 10% 
  • Other limitations/explanation: Possible inconsistency with standard care delivery across settings

Nursing Implications

There is a need for diverse cultural randomized, controlled studies defining successful interventions that improve caregiver quality of life during palliative care. This Swedish study reflected high rates of caregiver attrition because of patient deaths or health deterioration. This suggests a critical need for innovative, personalized, short-term interdisciplinary healthcare interventions housed within the context of healthcare systems to meet caregiver needs.