Cancer caregivers’ experiences of prognosis in Australia: a qualitative interview study

Abstract

ObjectivesForecasting survival in cancer is a particularly challenging facet of oncological work and can involve complex interactions with patients and their families. While there is considerable research on patient experiences of being provided with, or becoming aware of, their prognosis, there has been much less emphasis placed on the experiences of caregivers. The aim of this paper was to examine caregivers’ experiences of prognosis.DesignThis study used semistructured interviews; transcripts were analysed thematically using the framework approach. These data are part of a larger research project focused on experiences of cancer survivorship.SettingRecruitment was from two metropolitan hospitals in Queensland, Australia.Participants50 caregivers of patients living with cancer and receiving treatment at two metropolitan hospitals (32% male, 68% female) participated in this study.ResultsFour main themes were identified: (1) caregivers’ uncertainty around the meaning and implications of prognosis, (2) caregivers’ sense of exclusion in prognostic conversations, (3) the practice of situating prognosis within a context of hope and (4) the precarious balance between realism, optimism and strategic ‘ignorance’.ConclusionsCaregivers are in many respects the unseen third party of prognostic communication. Developing a better understanding of caregivers’ perceptions of prognosis, including how this may be challenged, accepted or otherwise, is important in engaging caregivers in the process of communicating prognostic information. Facilitating greater participation by caregivers in prognostic conversations could potentially address evident complexities and even improve the experiences of all stakeholders in cancer care settings.

“We Have to Be Strong Ourselves”: Exploring the Support Needs of Informal Carers of Aboriginal and Torres Strait Islander People with Cancer

“…This is a source of stress for many carers and can contribute to carer burden [ 33 ]. To alleviate stress and anxiety, carers in the current study expressed a need for emotional support across different stages of the cancer journey, especially immediately after diagnosis and during periods of prognostic uncertainty, either from allied health workers or other carers who had similar experiences [ 4 , 34 ]. Other common needs identified in the current and previous research related to difficulties accessing practical support (e.g., financial assistance), information needs and assistance navigating the health system [ 35 ].…”

“…Informal carers often juggle multiple responsibilities while caring for the person with cancer, including household and work duties, caring for other family members, adjusting to changing role expectations and managing their own health and wellbeing [ 1 , 2 , 3 ]. While carers play a significant role in caring for people with cancer, the focus within the healthcare setting largely remains on the patient’s experiences [ 4 ].…”

Hope in the era of precision oncology: a qualitative study of informal caregivers’ experiences

“…In this way, hope can unify—binding people (patient, professional, carer, support network, researcher, regulator) together in pursuit of common purpose—but it can also become a source of disagreement, conflict and disorientation 40–42. Hope’s perceived therapeutic value can place emotional demands on caregivers (and others), who must work to generate, maintain and protect hope as a way of contributing to the patient’s care and potential survival13 43 44 as well as to the potential survival of future patients 12 32…”

Patient Reasoning: Patients’ and Care Partners’ Perceptions of Diagnostic Accuracy in Emergency Care

“…9,10 Involving care partners, such as family members, friends, patient advocates, or others who partner with patients to co-manage their health, in reporting is equally important and valuable. [11][12][13] Little is known about how patients form their assessments about an explanation of a health problem they receive. While an accurate diagnostic code documented in the medical records is helpful, it is patient's perception of an explanation of a health problem they leave emergency or urgent care with that determines patients' next steps.…”

“… 9 , 10 Involving care partners, such as family members, friends, patient advocates, or others who partner with patients to co-manage their health, in reporting is equally important and valuable. 11 – 13 …”