RESUMEN
OBJECTIVES: Evidence-based guidelines call for integration of palliative care within oncology from diagnosis. Misperceptions about palliative care have impeded implementation. Prior research has not examined perceptions about 'palliative care' versus 'supportive care' among patients and caregivers to whom this care is introduced routinely as part of comprehensive cancer care. We conducted a qualitative study of patients with myelodysplastic syndromes (MDS) and their informal caregivers to elicit perceptions of 'palliative care' and 'supportive care' before and after they received integrated primary/specialist palliative care from diagnosis. METHODS: Patients with newly diagnosed MDS and caregivers were interviewed about their understanding of 'palliative care' and 'supportive care' at diagnosis and follow-up. Interviews were audio-recorded, transcribed, and analysed by an interdisciplinary team. RESULTS: Forty-eight interviews were conducted in total, including with 21 patients and 13 caregivers at diagnosis, and 10 patients and 4 caregivers at follow-up. Initially, 28/34 participants (82%) associated 'palliative care' with death or fear/alarm. At follow-up, 11/14 participants (79%) recognised that 'palliative care' is not only for terminally ill patients, yet 13/14 participants (93%) still felt apprehensive about the term. Initially, 24/34 participants (71%) felt 'supportive care' sounded 'positive' and 12/14 participants (86%) reported this at follow-up. No participant associated 'supportive care' with death or fear/alarm at either time point. Among participants who had a preference, 'supportive care' was the preferred term initially and at follow-up. CONCLUSIONS: Patients with MDS and caregivers receiving integrated primary/specialist palliative care from diagnosis responded more favourably to and felt less apprehensive about 'supportive care', initially and at follow-up.
RESUMEN
Enactment may improve memory for verb phrases by facilitating episodic integration of object-action components into a unitized whole. It is unclear, however, whether the influence of enactment on episodic integration is related to or independent of the strength of the preexisting semantic relationship between components. To address this issue, the authors examined the influence of enactment on memory for lists of semantically related object-action phrases ("Put money in the wallet") and semantically unrelated phrases created by repairing these objects and actions to make phrases that were unusual but still were possible to perform ("String a thread through the wallet," "Put money in the napkin"). As such, phrases in the related and unrelated lists were matched for familiarity of the individual components and differed only in the associative strength of the object-action relationship. Although verbatim recall of unrelated lists was poorer under standard verbal encoding conditions, enactment succeeded in bringing performance to the level of related lists, indicating that enactment's influence on episodic integration was independent of the semantic relatedness of the object and action components. Analysis of partial recall errors (accurate recall of only one component) suggested that enactment benefited recall in the unrelated lists by improving memory for the action and reducing fragmentation of the association, providing further support for the unitization view. This pattern of results was replicated in normal older adults, a population that exhibits particular difficulty with episodic memory for unrelated associations. The cognitive mechanisms by which enactment may improve episodic integration in both younger and older adults are discussed.