Use of time in people with a life-limiting illness: A longitudinal cohort feasibility pilot study
adult; article; child; cohort analysis; female; human; male; palliative therapy; controlled study; clinical article; palliative care; quality of life; caregiver; feasibility study; outpatient; accelerometry; acceptability; Australia; burden; cohort study; European Quality of Life 5 Dimensions Questionnaire; Feasibility; Karnofsky Performance Status; multimedia; numeric rating scale; pilot study; recall; time-use
Background: To date, time-use studies in palliative care have been limited to exploration of time commitments of caregivers. Understanding time-use in people with a life-limiting illness might provide insight into disease progression, symptom management and quality of life. Aim(s): To determine the feasibility of a repeated-measures, time-use study in people with a life-limiting illness, and their primary caregivers, and to explore associations between time-use and perceived quality of life. Design(s): An observational repeated-measures feasibility pilot study. A priori criteria were established for study uptake (70%), retention (80%) and study value/burden (7 Numerical Rating Scale 0-10). Burden and value of the study, use of time (Multimedia Activity Recall for Children and Adults with adjunctive accelerometry) and quality of life data (EuroQol-5 Dimension-5-Level Health Questionnaire and Australia-modified Karnofsky Performance Status scale) were assessed at time-points across five consecutive months. Setting/participants: People living with a life-limiting illness and caregivers recruited from Southern Adelaide Palliative Services outpatient clinics. Result(s): A total of 10 participants (2 caregivers and 8 people with a life-limiting illness) enrolled in the study. All but one of the criteria thresholds was met: 66% of participants who consented to be screened were enrolled in the study, 80% of enrolled participants (n = 8) completed all assessments (two participants died during the study) and mean Numerical Rating Scale scores for acceptable burden and value of the study exceeded the criteria thresholds at every time-point. Conclusion(s): A repeated-measures time-use study design is feasible and was not unduly burdensome for caregivers and people living with a life-limiting illness. Copyright © The Author(s) 2019.
Jones T A; Olds T S; Currow D C; Williams M T
Palliative Medicine
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0269216319867214" target="_blank" rel="noreferrer noopener">10.1177/0269216319867214</a>
A Review of Apps for Calming, Relaxation, and Mindfulness Interventions for Pediatric Palliative Care Patients
Children; Meditation; mobile applications; multimedia; Palliative; relaxation; Stress; technology
Patients and families increasingly use mobile apps as a relaxation and distraction intervention for children with complex, chronic medical conditions in the waiting room setting or during inpatient hospitalizations; and yet, there is limited data on app quality assessment or review of these apps for level of engagement, functionality, aesthetics, or applicability for palliative pediatric patients. The pediatric palliative care study team searched smartphone application platforms for apps relevant to calming, relaxation, and mindfulness for pediatric and adolescent patients. Apps were reviewed using a systematic data extraction tool. Validated Mobile Application Rating Scale (MARS) scores were determined by two blinded reviewers. Apps were then characterized by infant, child, adolescent, and adult caregiver group categories. Reviewer discussion resulted in consensus. Sixteen of the 22 apps identified were included in the final analysis. The apps operated on either iOS or Android platforms. All were available in English with four available in Spanish. Apps featured a relaxation approach (12/16), soothing images (8/16), and breathing techniques (8/16). Mood and sleep patterns were the main symptoms targeted by apps. Provision of mobile apps resource summary has the potential to foster pediatric palliative care providers' knowledge of app functionality and applicability as part of ongoing patient care.
2018-01
Weekly T; Walker N; Beck J; Akers S; Weaver M
Children (basel)
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3390/children5020016" target="_blank" rel="noreferrer">10.3390/children5020016</a>