Time to Feel: Understanding Cancer Carers: Emotions and Support Preferences

Abstract

Family carers assume responsibility for much of patients' treatment coordination and emotional support, saving medical systems billions by reducing the number and duration of hospital admissions. However, in doing so, they tend to suffer high rates of psychosocial morbidity. While much is known about the experiences of cancer patients and carers of a family member with other diseases, little is known about the experiences and support services preferences of people caring for a spouse with cancer. Past research on this population is largely psycho-oncology based and emphasises carers' stress, burden and coping strategies. Using qualitative methods including participant observation, questionnaires, interviews and a focus group, this research provides an experience-driven understanding of these carers' experiences and support service preferences. Findings suggest that these carers experience a distinct kind of anticipatory grief: indefinite loss and indefinite grief. These concepts, referring to vacillating and uncertain anticipatory loss and grief, are presented as a more accurate conceptualisation of these carers' experiences of mourning and uncertainty about the future. Findings also show that carers of a spouse with cancer experience temporal anomie, a challenged sense of orientation towards the future. Using Hochschild's concepts of 'emotion work' and 'feeling rules' during analysis allowed for an interactive and social complement to the focus on individual coping strategies that dominates within psycho-oncology. Using this approach to analyse carers' emotions revealed the sense of lost direction towards the future that challenges carers' positive outlooks and showed that to overcome this temporal anomie, carers manage their own and their spouse's emotions towards their illness or the future. Further, interview accounts indicate that some carers' responsibilities are so time-consuming, they are unable to experience and explore their own emotions; they do not have time to feel. Much of the poorly understood variation in carers' needs and support preferences can be explained using a time-sovereignty framework. Those carers who do have time for emotions valued support groups and counselling as a means of emotion management clarification. Practical support, such as financial aid and respite care, however, is rarely accessible to those who need it most: carers who lack time-sovereignty. Current Australian medical system practices do not ameliorate this strain, as medical professionals tend to exclude carers from the consumer-role while relying on carers to provide patient care. Thus, caring for a spouse with cancer often entails a sense of confusion about complex and contradictory emotions, but little time to reflect on these emotions. These experiences are, in part, a product of a medical system which simultaneously relies on carers - thus increasing their burden - and excludes carers from important information, leaving them under-resourced to deal with their partners' needs and their own emotions. Show more