Aims: Evidence-based guidelines exist to guide health professionals (HP) about nutrition and cancer. However, little is known about the patient/carer nutrition experience and needs following a cancer diagnosis. This study aimed to develop an understanding of the experience and needs of patients/carers regarding nutrition care across the cancer care continuum.
Methods: Patients/carers with a diagnosis of cancer treated at a Victorian hospital, or who cared for someone who did, were recruited through Victorian health services and cancer organisation consumer networks via distribution lists, eNewsletters and social media. Participants completed a study-specific online survey, participated in focus groups, or both. Focus groups were audio-recorded, transcribed, and thematically analysed using interpretive description. Focus groups were held until saturation of themes was reached.
Results: Of 165 survey respondents, only 51% (n=84) reported they talked to a HP about nutrition at any time during their cancer care, and of those, 62% (n= 52) spoke with a dietitian. The majority (84%) of patients/carers felt nutrition was important at one or more timepoints in their cancer care, indicating during and after cancer treatment the most important. However, support from health professionals for nutrition care was deemed low at all cancer care time-points. Five focus groups were held (n=20; 16 patients, 4 carers), 65% of participants were female and 75% from metropolitan areas. Six major themes emerged including information, control (over what/when to eat), value of nutrition, networks/connections (importance of), support (from family/friends, dietitians/HPs) and solutions (for optimal care).
Conclusions: Patients/carers felt nutrition was important during their cancer journey but support from HPs for their nutrition care was low. This study has identified critical time points and patient/carer views of optimal nutrition care in addition to strengths and weaknesses of the current pathway that will inform development of an optimal nutrition care pathway for people with cancer.