Networks of Survivorship Care for Young Cancer Patients
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Abstract This entry reviews the salient experiences of patients throughout cancer survivorship. Cancer can have devastating physical and psychological impacts on patients as they navigate from diagnosis to treatment to remission. After completing treatment, patients may continue to experience heightened levels of uncertainty about their cancer coming back and about communicating with their healthcare clinicians across the lifespan. Such challenges also may alter patients' close relationships and complicate patients' communicative efforts throughout survivorship.
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Overview As the population of cancer survivors continues to increase, so too has attention to the long‐term care needs of these individuals after treatment ends. While most survivors adapt well post‐treatment, many experience lingering effects of their illness. In some cases, these effects become permanent and raise challenges to recovery and adaptation. In this chapter, we outline some of the common persistent sequelae of cancer and their management and review the emerging guidelines for survivorship care planning. Models of follow‐up care after cancer are discussed, along with the needs and support of informal cancer caregivers in this process. Recommendations for future directions in survivorship research and care are provided.
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Cancer Survivorship
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Cancer Survivorship
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We have come full circle to the importance of the human relationship as it relates to the multiple layers of healing involved in cancer survivorship care. The epilogue validates the need for survivorship care plans that are more tailored to the individual and the importance of coordinated care in survivorship care and asserts that best practices need to be disseminated and implemented in “real-world settings.” The recognition and naming of these points in cancer survivorship are a call to action in response to the need for communication and coordination between survivors, clinicians, formal and informal caregivers, and all others who attend to the needs of those in post-treatment as well as those who are living with cancer.
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Most cancer survivorship initiatives are designed for patients whose treatment is intended to be curative. For patients living with advanced cancer, in contrast, survivorship research efforts and programs are far less common. This neglected aspect of cancer survivorship requires particular emphasis on active symptom management and clarification of goals of care.
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Effective cancer survivorship care is contingent on a comprehensive understanding and management of the dynamic needs of cancer survivors. The Sydney Cancer Survivorship Centre (SCSC) clinic established a holistic, multidisciplinary model of survivorship care. We aimed to explore survivors' experiences and perceptions of the clinic, and to identify their unmet needs.Semi-structured focus groups (FGs) involving participants recruited from the SCSC clinic were conducted by an experienced facilitator and observer using a guide covering: survivor perceptions of first SCSC clinic visit, services accessed, ongoing unmet needs, and how needs changed over time. FGs were audio-recorded and transcribed. Interpretive description using a Framework approach was undertaken and participant characteristics summarised descriptively.Eight FGs were conducted involving a total of 26 participants (mean age: 60), most were female (n = 20), born in Australia (n = 14), and with breast cancer diagnoses (n = 16). Four overarching themes were identified: (i) perceptions of the SCSC clinic; (ii) patient-centred care; (iii) adjustment to illness; and (iv) external supports and resources. Participants valued the centralisation of multidisciplinary survivorship care at the SCSC clinic, which helped their recovery. Mitigating ongoing treatment sequelae, reassurance of good-health, normalisation of survivorship experiences, and handling caregiver stress represent some needs identified.The SCSC clinic offers holistic, specialised care and reassurance to cancer survivors. Adjustment to the survivorship journey, inter-survivor shared experiences, and management of physical treatment sequelae were perceived as important in their recovery. Managing survivor needs is integral to improving long-term survivorship care.
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This article examines the relationship between gender and cancer survivorship. I argue that gender is as critical as a category of analysis for understanding cancer survivorship as it is missing from survivorship studies, particularly as concerns the identificatory basis of survivor culture and clinical studies regarding survivors’ quality of life (QOL). This under-studied question of the gendering of survivorship is critical because the consequences of the social production of disease is far-reaching, from the nature of medical research to social awareness, to funding to the well-being of cancer survivors themselves.
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