Duggleby, W., Williams, A., Holstlander, L., Cooper, D., Ghosh, S., Hallstrom, L. K., . . . Hampton, M. (2013). Evaluation of the living with hope program for rural women caregivers of persons with advanced cancer. BMC Palliative Care, 12(1), 36. 

To investigate the results of a Living With Hope Program on rural female caregivers‘ self-efficacy, hope, quality of life, and loss and grief when caring for persons with advanced cancer

Components of the Living With Hope Program included caregiver viewing of a Living With Hope video and journaling centered on “Stories of the Present” over a two-week period. Journaling focused on caregiving challenges and experiences supportive of hope in the caregiving experience. Measures assessing caregiver demographic data, hope, self-efficacy, quality of life, grief, and journaling time were collected at baseline, one week, two weeks, and 3, 6, and 12 months. Trained RNs collected baseline and one- and two-week data in caregiver homes and then by telephone at 3, 6, and 12 months. Convenience sampling produced an initial N of 36 but because of attrition based on uncontrolled factors dropped to 22 by the 12-month measurement time.

• N = 22  
• MEAN AGE = 59 years (SD = 11.6 years)
• FEMALES: 100%
• KEY DISEASE CHARACTERISTICS: Family members had a variety of cancer diagnoses requiring referral or receipt of palliative care services.
• OTHER KEY SAMPLE CHARACTERISTICS: 86.1% of caregivers were spouses, and half did not have caregiving assistance or services beyond palliative home care for their family member with advanced cancer; mean length of caregiving was 32.41 months (SD = 32.58 months)

• SITE: Multi-site
• SETTING TYPE: Home
• LOCATION: Rural-dwelling caregivers in Saskatchewan and Alberta, Canada

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

• A time-series, embedded, mixed methods design
  • Quantitative and qualitative

• Herth Hope Index (HHI)—measured caregiver temporality and future, positive readiness and expectancy, and interconnectedness; high test-retest reliability and validity (concurrent, criterion, and divergent)
• General Self-Efficacy Scale (GSES)—measured caregiver self-efficacy; reliable and valid measure supports history of use in many populations
• Short Form 12 (SF-12v2)—measured caregiver physical and mental health; correlates well with the longer SF-36 instrument
• Non-Death Revised Grief Experience Inventory (NDRGEI)—measured caregiver grief unrelated to patient’s death; measured existential concerns, tension and guilt, physical distress, and depression; established reliability with use in prior caregiver studies 

HHI scores at day 7 and 14 were significantly higher than baseline values (p = 0.013), and GSES scores were significantly higher at all data points compared to baseline values (p < 0.04). SF-12v2 physical summary scores were significantly lower at 12 months than at baseline (p = 0.04), but instrument mental scores at 3 and 12 months were significantly higher than at baseline (p < 0.03). A positive correlation between GSES and HHI scores (p < 0.001) and a negative correlation between NDRGEI and HHI scores (p = .0.01) was found. HHI and NDRGEI scores significantly predicted caregiver mental health summary scores (p = 0.01 or less) and similar physical health scores (p < 0.04). All caregivers completed the Living With Hope intervention with a mean 4.18 (SD = 4.07) journal entries per week and an average journal composition time of 9.12 minutes (SD = 8.89 minutes). Qualitative analysis data supported the value of journaling, social support, and faith and spirituality in responding to caregiver challenges with accessing care, financial issues, and caregiver health.

Study findings suggest that the Living With Hope Program may increase hope in rural female caregivers of people with advanced cancer who are receiving palliative care services. The study's small sample size, convenience sample, limited journaling exercise, and inherent threats to internal validity (e.g., history, selection,  maturation) due to study design support further studies of the Living With Hope Program as an evidence-based psychosocial intervention for caregivers of patients with advanced cancer.

• Small sample (less than 30)
• Risk of bias (no control group)
• Risk of bias (no random assignment)
• Findings not generalizable
• Subject withdrawals 10% or greater

Clinicians benefit from examining interventions, such as the Living With Hope Program, that improve caregiver hope via increasing self-efficacy and minimizing feelings of loss and grief with advanced cancer family member care. Study results that rural caregivers experience poorer physical and mental health than the general population also support clinician attention to caregiver health issues during care encounters.