Purpose
Co‐creation, characterised by artists and patients creating a joint work of art, may support patients with the integration of life events, such as living with cancer, into their life story. ...In the process of co‐creation, resonance relationships between patients, artists and material may evolve that support such integration. Using the framework of resonance theory, we aim to investigate if and how patients move through the three phases of resonance during a process of co‐creation and explore the role of uncontrollability in this process.
Methods
Ten patients who received cancer treatment with palliative intent completed co‐creation processes, which were audio recorded. These recordings were imported in Atlas‐Ti and analysed by applying content analysis. We searched for the three phases of resonance, Being affected, touched and moved; Self‐efficacy and responding; Adaptive transformation. We additionally searched for signs of uncontrollability.
Results
Patients used 4–8 sessions (median 5 sessions) with a duration 90–240 min per session (median duration 120 min). We found that patients move through the three phases of resonance during co‐creation processes. Uncontrollability both presents a challenge and an invitation to integrate experiences of contingency into one's life narrative. Patients express self‐recognition and the experience of contingency in their work of art.
Conclusions
Integration of experiences of contingency into a life narrative can be supported by the process of co‐creation of art, which invites patients to relate to their illness, their environment and themselves. The phases of resonance in combination with uncontrollability as a continuously present factor, provide a means to both study and support the integration of experiences of contingency into the life narrative.
In the process of co‐creation, resonance relationships between patients, artists and material may evolve that support integration of experiences of contingency. In the current study we aim to investigate, if and how, palliative cancer patients move through the three phases of resonance during a process of co‐creation and explore the role of uncontrollability in this process.
Significant disruptions in sleep-wake cycles have been found in advanced cancer patients in prior research. However, much remains to be known about specific sleep-wake cycle variables that are ...impaired in patients with a significantly altered performance status. More studies are also needed to explore the extent to which disrupted sleep-wake cycles are related to physical and psychological symptoms, time to death, maladaptive sleep behaviors, quality of life and 24-h light exposure. This study conducted in palliative cancer patients was aimed at characterizing patients' sleep-wake cycles using various circadian parameters (i.e. amplitude, acrophase, mesor, up-mesor, down-mesor, rhythmicity coefficient). It also aimed to compare rest-activity rhythm variables of participants with a performance status of 2 vs. 3 on the Eastern Cooperative Oncology Group scale (ECOG) and to evaluate the relationships of sleep-wake cycle parameters with several possible correlates. The sample was composed of 55 community-dwelling cancer patients receiving palliative care with an ECOG of 2 or 3. Circadian parameters were assessed using an actigraphic device for seven consecutive 24-h periods. A light recording and a daily pain diary were completed for the same period. A battery of self-report scales was also administered. A dampened circadian rhythm, a low mean activity level, an early mean time of peak activity during the day, a late starting time of activity during the morning and an early time of decline of activity during the evening were observed. In addition, a less rhythmic sleep-wake cycle was associated with a shorter time to death (from the first home visit) and with a lower 24-h light exposure. Sleep-wake cycles are markedly disrupted in palliative cancer patients, especially, near the end of life. Effective non-pharmacological interventions are needed to improve patients' circadian rhythms, including perhaps bright light therapy.
High rates of sleep-wake difficulties have been found in patients with cancer receiving palliative care. Pharmacotherapy is the most frequently used treatment option to manage these difficulties ...despite numerous adverse effects and the absence of empirical evidence of its efficacy and innocuity in palliative care.
This pilot study aimed to assess the feasibility and acceptability of a cognitive-behavioral and environmental intervention (CBT-E) to improve insomnia and hypersomnolence in patients with a poor functioning level and to collect preliminary data on its effects.
Six patients with cancer receiving palliative care (Eastern Cooperative Oncology Group score 2-3), who had insomnia and/or hypersomnolence, received 1 CBT-E individual session at home. They applied the strategies for 3 weeks. Patients completed the Insomnia Severity Index, the Epworth Sleepiness Scale, a daily sleep diary, and a 24-hour actigraphic recording (7 days) at pretreatment and posttreatment, in addition to a semistructured interview (posttreatment).
Participants found strategies easy to apply most of the time, and none was rated as impossible to use because of their health condition. However, their adherence and satisfaction toward CBT-E were highly variable. Results on the effects of CBT-E were heterogeneous, but improvements were observed in patients with a persistent insomnia disorder.
The CBT-E protocol tested among this highly selected sample was fairly well received and suggested positive outcomes in some patients, particularly those with an insomnia complaint alone.
Efforts should be pursued to adapt CBT-E and develop other nonpharmacological interventions, in order to provide an alternative to pharmacotherapy for sleep-wake difficulties in this population.
Abstract Acute episodic breathlessness in patients receiving palliative care is a distressing symptom with little evidence-base to inform management. This pilot, double-blind, controlled, crossover ...study compared the effects of nebulized hydromorphone, systemic hydromorphone and nebulized saline for the relief of episodic breathlessness in advanced cancer patients. On three occasions of acute breathlessness, patients randomly received either nebulized hydromorphone, a systemic breakthrough dose of hydromorphone or nebulized saline together with a blinding agent. Breathlessness was scored before and 10, 20, 30, and 60 minutes post-treatment completion using a 100 mm visual analog scale. Twenty patients completed the trial. Ratings did not differ significantly across pretest treatments. Change in ratings from pretest to 10 minutes after completion of nebulization (about 20 minutes after administration of systemic hydromorphone) indicated that each of the treatments resulted in statistically significant improvements in breathlessness, with no significant differences between treatments. Over time, breathlessness decreased significantly for all treatments, with no significant differences between treatments. Only nebulized hydromorphone produced a rapid improvement in breathlessness that reached a magnitude considered to be clinically important. Interpretation of these results is considered in relation to our definition of clinical significance, the dose of hydromorphone used and the possibility of a placebo effect. This study can serve to inform the design of future trials to investigate the management of incident breathlessness.
Purpose
The aim of this study was to investigate quality of life (QOL) differences between patients receiving first, second, or third-line palliative chemotherapy (CT).Furthermore, QOL was also ...compared to a sex- and age-matched sample of healthy controls.
Methods
Patients with different metastatic cancers receiving palliative CT were approached to complete the EORTC QLQ-C30 questionnaire by means of touch-screen computers before the start of CT, after 3 cycles and at the end of cytostatic treatment.
Results
One hundred four patients were recruited for QOL assessment (56.9% of patients in first, 22.5% second and 20.6% third- or above-line palliative CT). Compared to healthy controls, they suffered from substantial QOL impairments in all EORTC QLQ-C30 sub-domains. In regard to CT lines, patients with first-line CT reached better scores in emotional and social functioning than second-line patients and less financial difficulties than third-line patients. Despite the high level of impairment in the patient sample, electronic data collection proved to be feasible and well accepted.
Conclusions
The results indicate that patients receiving third- or above-line palliative CT are confronted with stronger QOL impairments than first- and second-line patients. Supported by its feasibility and acceptance of by patients, electronic QOL data capture is an attractive method to screen for symptoms and track their course within clinical routine.
Significant disruptions in sleep-wake cycles have been found in advanced cancer patients in prior research. However, much remains to be known about specific sleep-wake cycle variables that are ...impaired in patients with a significantly altered performance status. More studies are also needed to explore the extent to which disrupted sleep-wake cycles are related to physical and psychological symptoms, time to death, maladaptive sleep behaviors, quality of life and 24-h light exposure. This study conducted in palliative cancer patients was aimed at characterizing patients' sleep-wake cycles using various circadian parameters (i.e. amplitude, acrophase, mesor, up-mesor, down-mesor, rhythmicity coefficient). It also aimed to compare rest-activity rhythm variables of participants with a performance status of 2 vs. 3 on the Eastern Cooperative Oncology Group scale (ECOG) and to evaluate the relationships of sleep-wake cycle parameters with several possible correlates. The sample was composed of 55 community-dwelling cancer patients receiving palliative care with an ECOG of 2 or 3. Circadian parameters were assessed using an actigraphic device for seven consecutive 24-h periods. A light recording and a daily pain diary were completed for the same period. A battery of self-report scales was also administered. A dampened circadian rhythm, a low mean activity level, an early mean time of peak activity during the day, a late starting time of activity during the morning and an early time of decline of activity during the evening were observed. In addition, a less rhythmic sleep-wake cycle was associated with a shorter time to death (from the first home visit) and with a lower 24-h light exposure. Sleep-wake cycles are markedly disrupted in palliative cancer patients, especially, near the end of life. Effective non-pharmacological interventions are needed to improve patients' circadian rhythms, including perhaps bright light therapy.
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