Male Caregivers of Patients With Breast and Gynecologic Cancer

Experiences From Caring for Their Spouses and Partners

Violeta Lopez, PhD, RN, FRCNA; Gina Copp, PhD, RN; Alexander Molassiotis, PhD, RN

Disclosures

Cancer Nurs. 2012;35(6):402-410. 

In This Article

Abstract and Introduction

Abstract

Background: There is considerable evidence demonstrating the negative effects of caregiving particularly in the areas of psychological well-being and quality of life of family caregivers of patients with cancer. However, there is little work on male caregivers' subjective experience of caring for family members with cancer, and little is known on how caregivers experience the caring over time.
Objective:
The objective of the study was to explore male spouses'/partners' experience of caring for their wives/partners with breast and gynecologic cancer over a 1-year period.
Method: An exploratory longitudinal qualitative descriptive design using face-to-face interviews of 15 spouses/partners was used in this study. Content analysis of the transcribed data was conducted to extract significant categories and themes.
Results: Varying degrees of interrelated cognitive, physical, and psychological impact were experienced by caregivers that extended to 12 months. Gender-specific attitudes prevented male caregivers from supporting their own self. Male caregivers dealt with problems that arose in the caregiving congruent with their masculinity, such as minimizing disruptions, focusing on tasks, and keeping their own stress to themselves.
Conclusion:
Male caregivers as a separate group with their own needs have not received much attention in the cancer literature, and their concerns and challenges may differ from those of female caregivers.
Implications for Practice:
Male caregivers' concerns and challenges must be taken into consideration when planning appropriate interventions to support them in their caregiving role.

Introduction

In recent years, there has been an increase in research studies undertaken on family caregivers of individuals living with cancer beyond the initial phase of the illness.[1–4] Treatments for cancer patients are increasingly undertaken in outpatient departments; consequently, much of the immediate posttreatment patient care is now being undertaken at home by family members. This situation may be linked with increased "caregiver burden" and have an impact on the lives of informal caregivers.

The Psychosocial Impact of Informal Caregiving

There is considerable evidence demonstrating the negative effects of caregiver burden particularly in the areas of psychological well-being and quality of life of family caregivers of patients with cancer.[1,5,6] Tamayo et al[7] found that burden, disruptiveness, and financial concerns were identified as factors affecting the caregivers' quality of life and management of the patients. There are indications to suggest that high levels of distress place caregivers at risk of experiencing psychosocial problems. Previous studies have focused on depression as the topic of concern when examining the health of caregivers. Within this area of research, anxiety was identified to be present in 17.5% of caregivers, compared with 10.9% in a matched control group.[8] Grunfeld et al,[1] who conducted a longitudinal study of the psychosocial, economic, and occupational impact of caring for a terminally ill breast cancer patient reported that the prevalence of anxiety and depression in cancer family caregivers was 30% and 35%, respectively, and exceeded that of the patient with cancer. Recent studies also found that caregiver burden was the most important predictor of anxiety and depression.[4,9] Our own work with partners of patients with myeloma shows that partners had high levels of anxiety and depression (48.7% and 13.6%, respectively) that were higher than those of patients.[10] Partners were also more engaged with the illness than patients, provided practical and emotional support, and "filtered" negative information in an effort to protect the patients, which all led to a heightened sense of illness burden and difficulties with coping.[11]

Furthermore, Grov et al[12] found that the depression level of caregivers was significantly high, whereas Hwang et al[13] highlighted that the most frequently reported issues were emotional adjustment, changes in personal plans, and feeling upset, particularly in relation to changes observed in patients as a result of their disease process. They also found that spouse caregivers were twice as nonspouse caregivers to experience family adjustments and changes in personal plans. Moreover, caregivers who were older needed more information and education about the patients' disease and clinical prognosis.

The impact of cancer in any member of the family can be a life-altering experience especially for husbands and wives. The patients' experience of being diagnosed with cancer and the partner's emotional life and well-being often become interdependently linked impacting on their shared life each influencing and/or affecting each other's adjustment in dealing with the cancer.[14,15] Sherman[16] also argued that high levels of behavioral and psychological interdependence exist between husbands and wives and recommended that coping and adjustment processes of partners of breast cancer patients need further exploration. Hodgson[17] found that both the breast cancer patients' and their husbands' scores on the perceived health subscale of the SF-36 were relatively high compared with population norms. They also reported that spouses had lower marital satisfaction resulting from disengaging patterns of communication between them in relation to discussing their fears of reoccurrence, loss, and death and recommended that integrating communication exercises into their official follow-up visits to the doctor should be considered to teach couples how to open up, validate, and monitor each other's conversations.

The Physical Impact of Caregiving

Caregiving has also been associated with a decline in physical health such as high incidence of respiratory infections, fatigue, hypertension, eating disorders, poor health habits, and reduced immune function.[4,18,19] A recent review on the impact of caregiving has also identified that the key physical problems reported were sleep disturbance, fatigue and loss of physical strength, pain, loss of appetite, and weight loss.[20] Other studies documented the physical aspects of the quality of life of caregivers and found that half of the caregivers reported health problems such as heart disease, hypertension, and arthritis.[5]

The Influence of Gender on Caregiving

Caregiving burden appears to be a perceptual and multidimentional experience[21] and has been the focus of considerable research studies utilizing a range of caregiver burden instruments. Nijboer et al[3] explored the patterns of caregiving experiences in 148 partners of patients with cancer at the time of the partners' admission and at 3 and 6 months thereafter. The results showed that younger female caregivers perceived a more negative impact on loss of physical strength, whereas younger male caregivers perceived a more negative impact on disrupted schedule over time. Female caregivers were more likely to perform more personal care and household chores than male caregivers. However, although Nijboer et al[3] claimed that their study provided basic distinction between male and female caregivers, the period of 6 months might be too short to test this distinction and recommended additional longitudinal analyses. Furthermore, a recent study has provided evidence that husbands of patients with breast cancer reported strains in relation to social environment and sexual, vocational, domestic, and extended family relation, with coping in this group of caregivers being different when compared with husbands of people with no cancer.[22]

Although the above suggests that caregiving may be affected by gender, little work has been diverted to this area. We have some limited evidence from questionnaire studies that husbands of patients with breast cancer report greater stress of caregiving when their wife had poorer psychosocial functioning, whereas overall they had high caregiver esteem and reported less stress caring for their wife.[23] Also, male caregivers scored lower than females on cancer-related anxiety, future uncertainties, fear of recurrence, and future diagnostic tests, although gender differences were not found for survivor distress.[24] No studies to date have focused on gender issues that may affect the caregiving experience.

From the above review, it is clear that to date there is still limited understanding of caregivers' experiences, particularly those of male caregivers. The limited work undertaken has focused mainly on the distress between patients and caregivers. The small body of evidence in the field suggests that male spouses may be inadequately prepared to meet the new, ongoing, and variable needs of their partners and may be more inclined to use solution-driven strategies in supporting their spouses undergoing treatment for breast cancer.[25] Studies that have been conducted to examine cancer caregiver burden are also predominantly quantitative in nature, focusing mainly on breast cancer as a disease; there is little attention on caregivers' subjective experiences of caring for family members with cancer. Stenberg et al[20] recommend that more research is needed to better understand the variations in caregiving experiences over time and the influence on caregiving from sociodemographic characteristics, including gender.

Therefore, the purpose of this study was to provide an insight into the experiences of male spouses/partners who were actively caring for their wives/partners with either breast or gynecologic cancer over a 1-year period. As we were primarily interested in the qualitative nature of male caregivers' "experiences" prospectively, the main research questions formulated were purposely broad in order to provide the range and scope for such an inquiry including the following: (1) What were the impact of male caregiving over time? (2) What contextual and intervening conditions, if any, influenced and affected these male caregivers? And (3) how were the caregiving experiences constructed and managed?

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