title: 'Shadowing' as a management strategy for chemotherapy outpatient primary support persons.
abstract: Despite growing numbers of patients with cancer receiving chemotherapy in outpatient settings and the corresponding increase in care demands on family and close friends, little is known about the experiences of those informal carers supporting people with cancer during their chemotherapy trajectories. Using an interpretivist theoretical framework, this study explored the experiences of primary support persons of chemotherapy outpatients through in-depth interviews with 17 participants nominated as their primary support persons by people receiving chemotherapy at a large tertiary hospital in Australia. The study demonstrates that primary support persons of chemotherapy outpatients face distinct challenges, being at the frontline of treatment and managing side effects with minimal support at home. This role involves sensitive provision of complex medical and social care in circumstances that profoundly challenge the everyday worlds of both patient and carer. From the moment of diagnosis, informal carers in this context face the 'double whammy' of needing to 'manage' the cancer diagnosis experience as well as the chemotherapy trajectory experience. This study points to the significant level of responsibility that primary support persons take on, and the extent to which patients and clinicians rely on their support and management skills. It also points, however, to the lack of recognition they receive for assuming this role, and their sense of frustration in the face of this invisibility. The conceptualisation of the informal carer role as a 'shadowing' role explicitly represents the protective, vigilant, but almost invisible, support role described by the participants in this study.
authors.affiliation: Sydney Nursing School, University of Sydney, Camperdown, NSW, Australia.
authors.forename: Heather
authors.initials: H
authors.lastname: McKenzie
authors.affiliation: Sydney Nursing School, University of Sydney, Camperdown, NSW, Australia.
authors.forename: Kate
authors.initials: K
authors.lastname: White
authors.affiliation: Sydney Nursing School, University of Sydney, Camperdown, NSW, Australia.
authors.forename: Lillian
authors.initials: L
authors.lastname: Hayes
authors.affiliation: Centre for Rural and Remote Mental Health, University of Newcastle, Orange, NSW, Australia.
authors.forename: Scott
authors.initials: S
authors.lastname: Fitzpatrick
authors.affiliation: Chris O'Brien Lifehouse, Camperdown, NSW, Australia.
authors.forename: Keith
authors.initials: K
authors.lastname: Cox
authors.affiliation: Sydney Nursing School, University of Sydney, Camperdown, NSW, Australia.
authors.forename: Jo
authors.initials: J
authors.lastname: River
mesh_terms: D000970:Antineoplastic Agents / Q000627:therapeutic use*; D001315:Australia; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000188:drug therapy*; D012944:Social Support
chemical_list: D000970:Antineoplastic Agents
keywords: cancer care; chemotherapy outpatient; informal carer; primary support person