Clinical Research Fellow Centre for Palliative Care
University of Melbourne and the Victorian Centre for Nursing Practice Research, Melbourne Vic
Over the next 20 years, with earlier detection, improved treatments and survival rates, an increased number of individuals with cancer will require assistance at home. Given1 states that social policy has reflected the assumption that it is a family’s responsibility to care for the individual after initial diagnosis and treatment for cancer. Wright and Leahey2 believe the effect of cancer is multidirectional, the impact of the illness status on the family and the family’s impact on the illness status are reciprocal and highly interdependent. Therefore the family can no longer be viewed primarily as the principal source of support, but as the unit that faces the disease.3,4
The first step in supporting caregivers in their role is to assess their needs. Studies show that carers often ignore their own needs or fail to report them and having unmet needs can result in decreased satisfaction and stress which in turn impedes family functioning. Care of the family, as well as the patient, is becoming an integral component of nursing care. Nurses are in an ideal position to provide this care as they often have frequent and prolonged contact with the patient and family.
Caregiver needs can be described according to six categories: informational, psychological, patient care, persona, spiritual and household. This paper focuses on the family caregivers’ informational needs and suggests education strategies which may assist the health professional to address these needs.
“Learning to live with cancer is no easy task. Learning to live with someone else’s cancer may be even more difficult”.5
The family has always been an integral member of the health care team. In the current health care system and contrary to common thought, informal supports such as the family provide more support to the chronically ill than formal organisations.6 In Australia, as in other developing countries, there is a growing expectation that families will care for those with a chronic illness or disability7. While taking on this role can be seen as normative, or expected family function, it is imperative to understand the negative as well as the positive outcomes for family members providing this care.
As a result of the shift in focus from the acute hospital setting to the ambulatory and community setting more and more care is being provided on an outpatient basis and at home and this care is constantly growing in complexity. The key to this working is the family caregiver. Another development that has affected family caregivers is the rapid advancement of modern technology and treatment methods resulting in more and more cancers being managed for extended periods8,9. Cancer is now considered a chronic illness and is less likely to be automatically equated with a death sentence10,11. Consequently cancer is a disease that patients and their families must learn to live with for long periods of time because an increasing number of patients are surviving with stable or slowly progressing cancer10. Health professionals must address the impact and consequences of technological advancements on family members taking on the caregiving at home.
Caregiver needs have received much attention from researchers over recent years and researchers have employed various methods to ascertain and describe caregiver needs. However, lack of concise definition of what constitutes a need, both in research reports and amongst researchers, creates an obstacle when reviewing literature about caregiver needs. For the purposes of this paper, a need refers to a condition that is important to the caregiver and is not currently being satisfied by his/her environment12. Current literature also indicates that the family’s cancer experience changes over time and is influenced by various stages of the illness trajectory as well as by personal, environmental and social variables related to their own situation (Hull, 1989). Each phase of the illness presents the family with new challenges related to information needs, ways of coping and adjustment to changes that occur13.
Many studies report a high incidence of informational needs amongst family caregivers14,15. Hileman and colleagues12 found caregivers had important unsatisfied informational needs related to treatment side effects, the future, symptoms and community resources. Other studies found needs related to being informed of the patient’s condition, knowing the patient was comfortable, being provided with honest information, knowing the reasons for symptoms, and dealing with unpredictability were most common16,17,18. Researchers constantly report that caregivers seek large amounts of information and that many unsatisfied needs can be related to the caregiver’s perception that information is difficult to obtain3,16,19,20. Difficulties may be the result of the family’s limited contact with health professionals21 or because the family has the responsibility to seek out information, which may be problematic especially if they lack confidence or are hesitant to ask for information already given to the patient 22,23. Provision of information is well developed within health care making the absence of information an easy scapegoat when a gap in practice, such as unsatisfied needs of caregivers, is identified. Weisman24 and Bloch and Singh25 suggest that information seeking is a common coping strategy used by individuals. Information helps lessen fear, removes a degree of unpredictability and permits a sense of control. According to Selder26 initial information seeking also reduces uncertainty, a finding supported by Lewandowski and Jones13. Information is especially important to individuals taking on the caregiving role for the first time, or for those faced with constantly changing demands posed by various developments within an illness trajectory. Receiving information to deal with a new situation is preferred to learning new skills by trial and error27.
Caregiver needs have been well documented and it is time for health professionals to take up a new challenge, to focus on meeting these needs. While this is an important challenge for all health professionals it is the nurse who is in a position to take up this challenge. Indeed many nurses already view the patient and the family as the unit of care. Strategies that may assist more nurses and others to meet this challenge relate to education of health care professionals and education of family caregivers.
Health professionals should be provided with an opportunity to develop an understanding of the cancer experience from the family caregiver perspective. Therefore health professionals require education about the caregiving role, much in the same way as caregivers require information to carry out their role, and include skills, behaviours, knowledge, and attitudes. Skills required to work with caregivers include communication, assessment and teaching skills. They need knowledge about what it is like to be a caregiver and about the caregivers themselves including what is important to them, what they appraise as being stressful, their coping strategies, and available supports.
Comprehensive assessment of family caregiver needs is highly recommended. Early assessment of families who may not cope effectively allows for the provision of additional support and can help avoid tension between health care professionals and families28. Consideration must be given to:
There are many ways to approach the education of family caregivers ranging from practical demonstrations and the provision of information in a group setting to provision of written, audio and video resources. It is beyond the scope of this paper to provide detail of each method therefore the focus will be on examples of written resources and websites known by the author.
A written resource for family caregivers, “When cancer won’t go away: For carers of people whose cancer has advanced”, is available from the Anti-Cancer Council of Victoria and begins to address issues such as:
A companion booklet, addressing similar issues, has been written for the person with advanced cancer.
A similar booklet, “Taking Time: Support for People with Cancer and the People Who Care About Them”, is an American publication from the National Institute of Health. This booklet is written for both the patient and the carer and covers issues such as:
It is a very helpful resource however some of the language is a little foreign to the Australian reader. Similarly, the book Caring for the Patient with Cancer at Home – A Guide for Patients and Families, produced by the American Cancer Society, is very helpful and practical. It concentrates on managing symptoms such as constipation, dry skin, shortness of breath, hair loss and swallowing problems.
The Internet and World Wide Web have opened many doors for health professionals, patients and carers alike. A great deal of information is easily accessible however it must be approached with caution as there is minimal regulation over what is posted on the web. Consequently if patients or families are wanting to access information in this way it is wise to provide them with reputable websites, suggest they share information that appeals to them with a health provider or if possible be present when they access the World Wide Web.
Useful websites include:
The Carers Association also has a plethora of information for caregivers of people with a range of diseases, not just cancer. They also have a Carers Advice Line: 1800 242 636.
There is no doubt family caregivers are a vital member of the health care team. Caregivers are constantly faced with competing demands and fluctuating needs. Health professionals must take up the challenge of meeting these needs by considering family caregivers as valued individuals who are an inherent part of the unit of care. To achieve this both health professionals and caregivers need appropriate education so they can work together to care for a person with cancer.
7. J Schofield, S Bloch, H Herrman, B Murphy, J Nankervis and B Singh, (eds). Family caregivers: disability, illness and ageing. Allen & Unwin (in association with Vic Health), St Leonards, Australia, 1998.