Decision Aids

Decision Aids

PEP Topic 
Caregiver Strain and Burden
Description 

Decision aids (DAs) are seen as materials provided to facilitate an individual’s decision making through provision of information and activities to work through the actual decision-making process. DAs may take a number of different forms, such as videos, workbooks, and online decision-making tools. A type of DA was examined for efficacy related to caregiver strain and burden.

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Likely to Be Effective

Research Evidence Summaries

Yun, Y.H., Lee, M.K., Park, S., Lee, J.L., Park, J., Choi, Y.S., . . . Hong, Y.S. (2011). Use of a decision aid to help caregivers discuss terminal disease status with a family member with cancer: A randomized controlled trial. Journal of Clinical Oncology, 29, 4811–4819.

doi: 10.1200/JCO.2011.35.3870
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Study Purpose:

To test whether a decision aid (DA) consisting of a videotape and workbook focused on explaining how to discuss death with family members is more effective than a videotape and workbook on patient pain control for caregivers of patients with cancer

Intervention Characteristics/Basic Study Process:

A computerized random number generator blindly assigned caregivers to either a study treatment arm or a control arm with stratification according to caregiver age and patients’ awareness of their terminal status. The treatment group received a DA consisting of a 20-minute take-home educational DVD and a companion 43-page workbook, Patients Want to Know the Truth, for family members’ disclosure of terminal status to patients intended to facilitate decision making of patient–caregiver dyads. The authors developed and rigorously tested the DA, based on the transtheoretical model, in several earlier studies that appear in refereed journals to support its current study use. The control group received a National Cancer Institute–developed, Korean language DVD of similar length and a 29-page educational booklet developed by the Korean Ministry of Health and Welfare on cancer pain control. Both treatment and control groups were observed and assessed at the same intervals: zero, one, three, and six months.

Sample Characteristics:

  • The sample (N = 119) included 63 participants in the intervention group and 56 participants in the control group. 
  • Patient mean age was 61.9 years (SD = 12.9); caregiver mean age was 45.6 years (SD = 11.8).
  • The patient sample was 57.2% male and 42.8% female; the caregiver sample was 33.2% male and 66.8% female.
  • Patients were diagnosed with breast cancer (18.5%), lung cancer (15.1%), terminal stomach cancer (14.6%), colon cancer (12%), liver cancer (7.4%), and “other" cancers (42.5%).
  • All patients were defined as terminally ill and nonresponsive to conventional cancer therapy.
  • All caregivers were a spouse, parent, or child of the patient, 80% were married, 40% had college education or higher, 69% believed in a religion, and most were urban dwellers who had a monthly household income of $2,000 or more.

Setting:

  • Multisite
  • Inpatient and outpatient settings
  • Korea

Phase of Care and Clinical Applications:

  • End-of-life phase
  • End-of-life and palliative care; education; quality of life

Study Design:

A randomized controlled trial design was used.

Measurement Instruments/Methods:

  • Decision Conflict Scale (DCS): Used to assess caregiver perceptions of decisional conflict (uncertainty in making choices, feeling informed, clarity of personal values, and receipt of decision-making support) and satisfaction with choice; five-point Likert scale with 0.90 Cronbach’s alpha; administered to caregivers at zero, one, three, and six months   
  • Hospital Anxiety and Depression Scale (HADS): Used to measure caregiver psychological distress; Cronbach’s alphas for two factors ranged from 0.81 to 0.85; administered to caregivers at zero, one, three, and six months     
  • Caregiver Quality of Life Index–Cancer (CQOL): Used to measure caregiver quality of life with cancer; five-point Likert scale and Cronbach’s alpha of 0.89; administered to caregivers at zero, one, three, and six months
  • Decision Regret Scale (DRS): Used to measure caregiver regret with decision to discuss terminal diagnosis with patient; five-point Likert scale and Cronbach’s alpha of 0.89; administered to caregivers at one, three, and six months

Results:

Sociodemographic and clinical characteristics of the treatment and control groups did not differ significantly, nor were there significant between-group differences in baseline DCS, HADS, or CQOL-C scores. By six-month assessment, only 26.8% of the total sample remained. Decisional conflict and satisfaction total score and conflict, uncertainty, and value clarity subscale scores significantly improved from baseline to one month for the treatment group as compared to the control group. Over six months, significant between-group differences continued for the DCS total score (p = 0.40) and subscales for conflict (p = 0.031), uncertainty (p = 0.014), and value clarity (p = 0.039). Depression scores improved significantly more in the treatment group than in the control group, and this was sustained over six months (p = 0.008). In the caregiver groups in which patients knew their terminal diagnosis, at six months, DCS uncertainty and depression scores (p = 0.029 and p = 0.031, respectively) showed significant improvement in the treatment (DA) group as opposed to the control group. In the caregiver groups in which patients did not know their terminal status, only the value clarity and depression subscale scores (p = 0.037 and p = 0.032, respectively) showed significance, with greater improvement in the treatment group at six months.

Conclusions:

Theoretically based DAs appear to help caregivers of patients with cancer communicate with terminally patients if trained professionals assist those caregivers in the process of using them. This study found that the use of a DA did not improve the decision to discuss terminal prognosis but did reduce caregivers’ decisional conflict and depression, which is congruent with other literature. The caregivers in the treatment group did not have a decrease in anxiety.

Limitations:

  • The sample included Koreans only. The DA needs to be tested with other diverse groups and illness populations. 
  • There was high attrition of the sample over the duration of the study (more than 70% in both the control and intervention groups); hence, this was a low-powered study despite the authors’ early determination of needed sample for statistically significant results.

Nursing Implications:

Nurses have a primary role in assisting patients and caregivers in making treatment decisions to improve the quality of decision making for both groups. Helping patients become involved in decision making is an important facet of patient-centered care. Face-to-face discussions among nurses, patients, and caregivers often facilitate family coping when nurses engage in astute assessment and establish a trusting relationship with patients and their caregivers to understand their concerns. Use of DAs may provide an additional way to educate and empower patients and caregivers for difficult conversations, including those surrounding end-of-life prognosis and decisions. Nursing support and conversations about the efficacy of DAs for both patients and caregivers can offer greater insight into needed components of care to meet goals for quality patient and caregiver care during the cancer trajectory.


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