In the area of pain management, caregivers need to understand pharmacologic issues and medication instructions. Specifically, caregivers have been shown to need instructions on the following:
- Which medications to use for pain relief.
- When to give a medication.
- How to assess the efficacy of pain control.
- How to monitor for side effects.
- How to identify negative results or ineffectiveness.
A caregiver's knowledge of and attitudes about symptoms such as pain and fatigue may influence the patient. A caregiver who harbors fears of causing addiction, overdosing, or indirectly causing discomfort through side effects may guard the medication supply, limit its use, and undermedicate the patient. Caregivers need to be trained in managing the side effects of treatment because the experience of side effects can cause cancer patients to abandon their treatment regimens.
Caregivers report learning most of their caregiving skills through trial and error and would like more assistance from the formal health care system. Caregivers have been shown to benefit from training in nonpharmacologic strategies for symptom management, including the following:
- Use of heat and cold compresses.
- Energy conservation.
- Rest and restoration strategies.
Skills in positioning the patient with pillows, mobilizing the patient, and assisting the patient with ambulation in an effort to promote pain relief and reduce fatigue can also be taught.
Dealing with the impairment of mobility is ranked by caregivers and cancer patients alike as one of the most difficult caregiver responsibilities. Caregivers must frequently help patients with their mobility issues and bear the responsibility for minimizing the risk of falls. A feasibility study demonstrated the ability to increase caregiver knowledge and skills related to safe mobility and decrease fall risk through the use of an educational video viewed when convenient for caregiver and patient. Use of this DVD technology to educate has been proven effective in other studies.
A pilot study using online intervention was successful in helping caregivers find information specific to their needs. Participants reported positive well-being, in large part resulting from the intervention. Other types of intervention that are frequently used but less well described in the literature include the following:
- Coaching patients and families to ask questions.
- Booklets, pamphlets, fact sheets, and information cards.
- Touch-screen information systems.
- Computerized information systems.
Accurate information helps reduce uncertainty and empowers caregivers by giving them a sense of control. In addition, caregivers derive emotional support from time spent with the pain professional. Caregivers report needing information about the following:[10,11]
- The patient's cancer.
- Symptom etiology.
- What to expect in the future.
- Treatment side effects.
- Management of medical emergencies.
Although several descriptive investigations have reported on the value of educational programs for caregivers, there is a paucity of outcome data. Many of the studies have important methodological flaws, especially in delineating outcome variables.