Background: Breast cancer is a problem that affects not only the individual’s health and quality of life, but also the functionality of the family system. Caregivers experience stress when their patients cannot cope with the symptoms of their disease. The stress experienced by caregivers gives rise to psychological and physical symptoms in them. This study seeks to present a complete set of tools for assessing coping in the spouses or caregivers of women with breast cancer and evaluate the various instruments developed within these lines of inquiry.
Methods: A search was carried out in PubMed, Scopus, Web of Science, CINAHL, PsycINFO, Medline, ProQuest, Scopus and Google Scholar and also in the reference lists of the key articles retrieved for any coping assessment instrument targeting family caregivers’ needs that had acceptable psychometric properties and was published until September 2019. The instruments used to assess coping in the spouses and caregivers of women with breast cancer were thus identified and their properties were described.
Results: Overall, 88 adaptation assessment tools related to family caregivers of patients with breast cancer were identified in 28 related articles. The tools examine different dimensions of adaptation such as satisfaction, stress, burden and needs of spouses and caregivers of patients with breast cancer.
Conclusion: Assessing family caregivers’ coping is essential for providing them with the appropriate sources of support. Although several instruments have been used to assess coping in the spouses and caregivers of women with breast cancer, the properties of these instruments have to be examined before they can be more widely implemented.


Keywords: coping, assessment tools, caregivers, breast cancer, family


INTRODUCTION

Breast cancer is the most common cancer among women in both developed and developing countries. The incidence of breast cancer is increasing in the developing world due to the increase in life expectancy and urbanization and the adoption of western lifestyles.1,2 Breast cancer affects 2.1 million women each year and is responsible for the greatest number of cancer-related deaths among women. In 2018, an estimated 627,000 women died of breast cancer, comprising approximately 15% of all cancer-related deaths among women. While breast cancer rates are higher among women in more developed regions, the rates are increasing globally in nearly every region.3


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Breast cancer is a problem that affects not only the patients’ mental and physical integrity, but also their family caregivers’ health. Caregivers experience stress symptoms, such as depression, anxiety, fear, loneliness, psychosomatic symptoms and marital problems, and physical symptoms, such as fatigue, anorexia, indigestion, constipation, serious sleeping disorders and pain.4 Among the caregivers of breast cancer patients, spouses are usually the primary caregivers who take on more caregiving responsibilities than other family members; therefore, the spouses of breast cancer patients are subject to unique challenges that are different from those experienced by other family caregivers. For example, the commitment and obligations that form part of any marriage may heighten people’s assessment of their caregiving responsibilities. Some aspects of adaptation are also only applicable to spousal relationships (eg, sexual adaptation, household management and concerns about the children’s and family’s future).

Adaptation to breast cancer is not merely a personal issue of the patients, but it also directly affects the spouse and family members of the patient. Throughout the process of adaptation to breast cancer, patients and their caregivers need to manage cancer-related problems and distress as well as make arrangements in different life domains.5

Several reviews have been conducted on the caregivers of cancer survivors. For example, Goldswig et al found that the caregivers of cancer patients have a low social support and are not adequately capable of adapting to this enormous pressure.6 Li et al wrote in a review article that the wives of cancer patients have negative experiences of providing care to their patients, and this experience has adverse effects on the whole family.7 The wide spectrum of problems experienced by cancer patients mandates their examination from different aspects in the view of the spouses and caregivers of these patients. The problems experienced by caregivers are very similar in different societies, but there may be slight variations based on the culture and conditions governing each society, which require further scrutiny.8,9 For example, in Islamic and Arab countries, religious strategies are more widely used to adapt the patients and their caregivers to the disease.10

The caregivers of breast cancer patients tend to report reduced physical functioning, lower vitality, reduced immunity, increased physical symptoms and sleep problems. Compared to husbands with healthy wives, the husbands of breast cancer patients reported a significantly lower level of vitality and physical quality of life.10,11 Mortimer et al12 found that men who had lived longer with a spouse’s breast cancer showed a greater suppression of their cutaneous delayed-type hypersensitivity response.13

Breast cancer patients’ treatment and disease status can affect the husband’s or caregiver’s physical well-being. Compared to the husbands of healthy women, husbands with a wife undergoing chemotherapy and mastectomy reported more physical symptoms and lower physical quality of life.11 These findings suggest that the husbands’ physical well-being is also likely to deteriorate when their wife is being treated for a disease, and coping is crucial in these situations.

In the process of coping with cancer, caregivers need to manage their emotional distress and solve specific cancer-related problems (eg, treatment difficulties and reallocation of household tasks). Nurses should provide appropriate care to patients and their caregivers in order to assess their adaptation. Investigating adaptation to the disease among male caregivers can be helpful both for the men themselves and ultimately their wife with breast cancer. Specialized tools are needed to measure coping in the spouses of women with breast cancer. Given the clinical impact as well as the economic consequences of breast cancer on caregivers, knowing the overall experiences of caregivers in supporting and caring for patients can be very helpful. An important component of addressing this issue is the selection of the most appropriate tool for measuring the14 impact of breast cancer on caregivers.14 This systematic review was therefore carried out to identify any instruments used for assessing informal caregiving in breast cancer and describe their measurement properties in this population. Such information will guide clinicians in addressing the aspects of caregiving most in need of support in this group.

The objectives of this review include:

The first purpose of this systematic review to identify the instruments used to assess coping in spouse and family caregiver in breast cancer patients and describe their measurement properties if assessed in this population. Second, the various instruments developed within these lines of inquiry will be critically evaluated.

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