Challenges related to the cancer care role
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Background: Cancer caregiving occurs across all the settings in which care is delivered and often involves interacting with numerous providers, back and forth transitions from hospital to home, and eventually end-of-life care. The journey is nonlinear and each phase of the care process brings with it new challenges for the carers. Family members make a vital, hidden contribution to the health and well-being of the nation, however their care roles and needs remain largely unaddressed, and are omitted from conversations with healthcare providers. Aim(s): In line with the NCRI research priorities announced in November 2018, the aim of this study was to gain insight about carers' experienced challenges while providing support to a close one diagnosed with cancer at main transition points in the journey. Method(s): Data were collected through in-depth interviews and two focus groups with carers residing in the East Midlands of England. Data were thematically analysed. Result(s): Twenty four participants took part in the study (4 males; 20 females; age range 37-76; 4 HCPs). Themes emerged from the data explained aspects related to (1) specialist services (lack of access to facilities, lack of timely and right information about treatment sideeffects, follow-up care, and use of medical devices, undignified care, and service discontinuity) and (2) patient's diagnosis and decisions (comorbidities, treatment discontinuity, and refusal to communicate). Conclusion(s): This study has identified carers' challenges related to their roles and responsibilities. It highlights the need of coordinated and family oriented services to empower carers to manage the illness throughout the diagnostic and treatment journey.