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Family Caregivers in Cancer: Roles and Challenges (PDQ®)

  • Last Modified: 02/21/2014

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Interventions for Caregivers

Education and Information
Counseling and Psychotherapy
Home Care Services for the Cancer Patient
Hospice Care for the Cancer Patient
Psychoeducation
The Family Meeting
Rehabilitation for the Caregiver

Caregivers usually define the onset of caregiving as the time of the patient’s first cancer diagnosis; ideally, interventions for the caregiver should begin then. However, no validated model exists that can be applied to understanding the family caregiver experience, and few settings perform routine caregiver assessment—making the job of oncology practitioners more difficult, as they have no suitable framework for guiding their care decisions.[1]

Generally speaking, interventions for the caregiver include the following:

  • Education and information.
  • Counseling and psychotherapy.
  • Home care services for the cancer patient.
  • Hospice care for the cancer patient.
  • The family meeting.
  • Psychoeducation.
Education and Information

Clinicians generally agree on the value of providing information to caregivers. Information tailored to a caregiver’s situation provides guidance for implementing care. Information may also help reduce the stress of caregiving and associated feelings of inadequacy and helplessness.[2] Information about the patient's disease trajectory, anticipated course of disease, and the range of emotions experienced by families helps normalize the experience and enhances a caregiver’s sense of control.

Caregivers and cancer patients may experience stress related to meeting new oncology clinicians and being introduced to new treatment facilities. One review of the effects of programs that provide information to cancer patients and caregivers about the cancer therapy facility and available services was undertaken. Reviews of randomized controlled trials (RCTs), cluster RCTs, and quasi-RCTs related to the effects of interventions designed to help orient caregivers and patients to the cancer care facility revealed only four studies with 610 participants. Results from two RCTs showed significant benefit related to reduction of distress levels but nonsignificant benefit to anxiety levels. Other positive benefits included increased knowledge about the cancer center and cancer therapy and improved coping abilities, with no harmful or adverse effects. However, the authors concluded that the studies were generally of poor quality with low numbers of participants, resulting in potential bias.[3][Level of evidence: I]

Caregivers want factual information about cancer and its treatment, related symptoms, and side effects. They need specific details about what to do and how a particular cancer is likely to behave. In one survey, priority areas of information and education needs identified by cancer outpatients and their caregivers included management of pain, weakness, and fatigue, followed by the types of services available to facilitate patient care at home.[4] The most important time periods during the patient’s disease trajectory for caregivers to receive information appear to be the following:[5]

  • At diagnosis.
  • During hospitalization.
  • At the start of new treatments.
  • At recurrence.
  • During the dying phase.

However, because of the chronic nature of cancer and the range of tasks that need to be mastered at different times, the nature of a caregiver’s information needs changes over time.[4]

In the area of pain management, caregivers need to understand pharmacologic issues and medication instructions. Specifically, caregivers have shown a need for instructions in the following:[6]

  • 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.[7] 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.[2] Caregivers have benefited from training in nonpharmacologic strategies for symptom management, including the following:

  • Massage.
  • Use of heat and cold compresses.
  • Energy conservation.
  • Rest and restoration strategies.
  • Relaxation.
  • Distraction.

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.[6]

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 proven effective in other studies.[8]

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.[9] Other types of intervention that are frequently used but less well described in the literature include the following:[4]

  • Coaching patients and families to ask questions.
  • Booklets, pamphlets, fact sheets, and information cards.
  • Touch-screen information systems.
  • Webcasts.
  • 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.

The availability of informational tools such as written materials, audiotapes, and videotapes for caregivers has lagged behind the availability of comparable tools for cancer patients. Family caregivers of cancer patients need their own educational materials that include problem-solving strategies, specific caregiving strategies, and self-care.[12]

Few available data examine the relationship between caregiver interventions and increases in care provided to patients. In a randomized trial involving patients with stage III and stage IV cancers who were receiving chemotherapy and experiencing pain and fatigue, patients and their caregivers were randomly assigned as a dyad to a symptom management intervention delivered by a nurse or to a coach-led intervention conducted by a member of the research staff.[13][Level of evidence: I] A total of 225 caregiver-patient dyads were enrolled in the study. The purpose of the trial was to determine which intervention more effectively increased caregiver involvement in assisting with patient symptom care and improved caregiver emotional health.

The caregiver portion of the study was designed to help caregivers learn to support patients and understand the role of helping patients implement self-care strategies. Caregivers assigned to a symptom management problem-solving intervention group received three phone contacts from an oncology nurse, who:

  • Solicited information regarding roles in symptom assistance and care tasks.
  • Discussed the importance of providing emotional support to the patient and managing symptoms.
  • Assisted in problem-solving techniques.

A toolkit for symptom management was also provided and referenced.

The coach-led information group also received three phone contacts from a research staff member, who provided no instruction or assistance with problem solving but referred caregivers to the toolkit for specific symptom management.

Results of the study showed no significant main effect of the problem-solving intervention arm on assistance provided by caregivers who exhibited symptoms at 10 weeks. However, caregivers with lower levels of depressive symptoms in the nurse-delivered intervention group were more likely to provide patient assistance. There was no effect seen on caregiver emotional health in either arm.

The authors concluded that nurse-delivered problem-solving interventions increase family caregiver assistance in those with lower levels of depressive symptoms. They also concluded that interventions focused solely on patient symptom management may not improve caregiver emotional health.[13]

Counseling and Psychotherapy

Counseling and psychotherapy are designed to reduce distress by helping caregivers adjust psychologically to the demands of caregiving.[2] These interventions are typically designed to enhance morale, self-esteem, coping, and sense of control while reducing anxiety and depression. Individual counseling is designed to provide caregivers with support, education, and problem-solving or coping skills. However, these interventions are expensive and may prove too time-consuming for working or highly distressed caregivers.[14]

Home Care Services for the Cancer Patient

Home care services provided for the cancer patient generally include caregiver support as part of the plan of care. Caregivers report high rates of satisfaction with such services and describe them as useful.[15][Level of evidence: I] At the same time, however, studies continue to show high levels of psychological morbidity and unmet needs among caregivers of cancer patients using home care services, suggesting that generic supportive nursing care does not fully meet caregiver needs.[14]

One group of investigators studied whether specialized oncology home care services provided to lung cancer patients influenced bereavement and psychological distress among survivors.[16][Level of evidence: I] Participants were randomly assigned to an oncology home care group, a standard home care group, or an office care control group. Spouses of patients in the oncology home care group had significantly lower psychological distress than did spouses of patients in either of the other groups.[16] These findings have been corroborated by others.

Hospice Care for the Cancer Patient

Family caregivers of home-based palliative care patients report the need for coaching in practical nursing skills and more access to professional advice to increase their self-confidence and ability to perform the practical aspects of home-based care.[17] In addition, caregivers assisting patients in the final stages of life experience as much distress as patients do, if not more. A meta-analysis of psychological distress among cancer patients and family caregivers found that both members of the dyad experienced similar levels of distress.[18] For these reasons, there is a strong correlation between quality-of-life scores for patients and their caregivers in hospice home care programs; caregivers continue to report high rates of burden.[19-22]

Psychoeducation

Psychoeducational programs provide caregivers of cancer patients with a variety of skills, resources, and problem-solving strategies to help them cope with caregiving. For example, the problem-solving model summarized by the acronym COPE (creativity, optimism, planning, and expert information) is designed to maximize a caregiver’s effectiveness, sense of efficacy, and satisfaction.[23] Caregivers are encouraged to develop creative solutions to challenging situations. The COPE problem-solving model:

  • Addresses the emotional aspect of problem-solving, combining optimism with realism.
  • Helps caregivers develop specific plans to meet their individual situations.
  • Teaches caregivers the rationales for what they do.

The authors of the COPE study contend that their model moderates caregiver stress through empowerment and training.[23]

Skills training for caregivers has proven effective in improving their quality of life, reducing the burden associated with symptom management, and in strengthening caregiving tasks. Such programs are effective for caregivers of patients at all stages of cancer, including end-of-life care and hospice.[22] The most effective skills training programs tend to be nursing intervention programs, which combine guidance, support, and nursing home visits.[6] Nurse-led transition coaching programs prepare patients and caregivers for the next level of care, teach communication skills, and follow patients to the home. In addition, the nurses initiate phone calls at 2, 7, and 14 days after discharge, thereby providing continuity of care through a single point of contact.[24]

The effectiveness of psychoeducational programs for caregivers of cancer patients has been mixed. For example, a 6-week problem-solving intervention with spouses of cancer patients was successful at reducing depression; however, there were no effects on coping, social support, or psychological well-being.[25] In another study, 237 cancer patient/caregiver dyads were randomly assigned to one of two groups: a conventional care group or a 20-week experimental group. The focus of the intervention was improving the caregiver’s ability in symptom management and reducing their distress. Although the intervention improved caregivers’ symptom management abilities, it was not effective in decreasing their depression.[26]

It is possible that interventions with multiple components are more effective in assisting caregivers. For example, the Family Caregiver Cancer Education Program targets education about symptom management along with skill-building in communication, managing roles and relationships, managing finances, and maintaining self-care.[27] Caregivers’ sense of confidence and being well informed increased after participation in the program, while perceptions of their own health improved over time.

The Family Meeting

Refer to the Convening a Family Meeting section in the Physicians Interacting With Family Caregivers section of this summary for more information.

Rehabilitation for the Caregiver

Although the subject of caregiver burden is well represented in the literature, one comprehensive review found a strikingly limited number of studies addressing interventions for caregiver strain and burden in oncology.[28] The extensive literature search yielded only 20 intervention studies, with only 8 studies that specifically cited outcome measures for strain and burden. Two systematic reviews [14,27] exclusively examined studies of caregivers in oncology or palliative care populations. However, most study designs were qualitative, descriptive, cross-sectional, or nonexperimental designs; therefore, many of the proposed interventions for caregivers (e.g., competence, support, respite, or adult day care) are those whose effectiveness cannot be established until further evidence is obtained with randomized clinical trials.

Although some of the interventions studied had positive psychosocial outcomes, the studies could not document a reduction in caregiver burden. Therefore, those particular strategies require further testing before their effectiveness in reducing caregiver burden can be established.[28]

Few intervention studies have demonstrated efficacy in improving the quality of life of caregivers from the study entry point. Instead, most intervention studies have demonstrated efficacy in improving knowledge of and skills in caregiving. For example, interventions designed to educate caregivers about how to seek out medical information, identify psychosocial resources, or manage symptoms have helped improve caregivers’ knowledge, confidence, and mood. Similarly, interventions designed to help caregivers develop problem-solving skills (e.g., coping with cancer) have demonstrated effectiveness in increasing caregiver self-efficacy in managing stress and in reducing psychological distress.[29]

In one study, the psychosocial needs of not only the caregiver but also other family members and people close to the dying patient—all defined in this study as "secondary survivors"—were examined. A qualitative assessment of the needs of the secondary survivors, which occurred after 8 weeks of group psychoeducational grief intervention, revealed a sense of powerlessness and isolation in these individuals. Also, support was identified as a need extending beyond the traditional needs associated with the care of dying patients. The authors concluded that intervention by social workers directed toward the needs of secondary survivors may be helpful.[30][Level of evidence: II]

References
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