Teens with complex chronic illnesses have difficulty understanding and articulating symptoms such as pain and emotional distress. Yet, symptom communication plays a central role in clinical care and illness management. To understand how design can help overcome these challenges, we created a visual library of 72 sketched illustrations, informed by the Observations of Daily Living framework along with insights from 11 clinician interviews. We utilized our library with storyboarding techniques, free-form sketching, and interviews, in co-design sessions with 13 pairs of chronically-ill teens and their parents. We found that teens depicted symptoms as being interwoven with narratives of personal and social identity. Teens and parents were enthusiastic about collaboratively-generated, interactive storyboards as a tracking and communication mechanism, and suggested three ways in which they could aid in communication and coordination with informal and formal caregivers. In this paper, we detail these findings, to guide the design of tools for symptom-tracking and incorporation of patient-generated data into pediatric care.
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Distress and self-care among chaplains working in palliative care
Abstract Background The prevalence of burnout and distress among palliative care professionals has received much attention since research suggests it negatively impacts the quality of care. Although limited, research suggests low levels of burnout or distress among healthcare chaplains; however, there has been no research among chaplains working in specific clinical contexts, including palliative care. Objective This study explored the distress, self-care, and debriefing practices of chaplains working in palliative care. Method Exploratory, cross-sectional survey of professional chaplains. Electronic surveys were sent to members of four professional chaplaincy organizations between February and April 2015. Primary measures of interest included Professional Distress, Distress from Theodicy, Informal Self-care, Formal Self-care, and debriefing practices. Result More than 60% of chaplains working in palliative care reported feeling worn out in the past 3 months because of their work as a helper; at least 33% practice Informal Self-care weekly. Bivariate analysis suggested significant associations between Informal Self-care and both Professional Distress and Distress from Theodicy. Multivariate analysis also identified that distress decreased as Informal and Formal Self-care increased. Significance of results Chaplains working in palliative care appear moderately distressed, possibly more so than chaplains working in other clinical areas. These chaplains also use debriefing, with non-chaplain palliative colleagues, to process clinical experiences. Further research is needed about the role of religious or spiritual beliefs and practices in protecting against stress associated with care for people at the end of life.
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- Award ID(s):
- 1738359
- NSF-PAR ID:
- 10161009
- Date Published:
- Journal Name:
- Palliative and Supportive Care
- Volume:
- 17
- Issue:
- 5
- ISSN:
- 1478-9515
- Page Range / eLocation ID:
- 542 to 549
- Format(s):
- Medium: X
- Sponsoring Org:
- National Science Foundation
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Abstract Aims To identify significant patient and system access barriers and facilitators to dermatology care in one rural health system with limited dermatology appointment availability.
Design Mixed methods study using data from electronic medical records, patient surveys, stakeholder semi‐structured interviews, and service area dermatologist demographics. Retrospective data were collected between 1 January 2017–1 March 2018, and interviews and surveys were conducted between June 1–August 31, 2018. Participants were recruited from two primary care practices in one rural Maine regional health system.
Methods Findings from thematic analyses, descriptive statistics, and statistical modelling were integrated using Chi‐square tests for homogeneity to develop a unified understanding. Statistical modelling using odd‐ratio logistic and linear regression were performed for each outcome variable of interest.
Results Urgent referrals by primary care increased the likelihood of dermatology care overall (OR: 6.771;
p = .007) and at nearby sites with limited availability (OR: 4.024;p = .024), but not at geographically further sites with higher capacities (p = .844). Referral under‐diagnosis occurred in 20.8% of those biopsied. Older (p = .041) or non‐working (p = .021) patients were more likely to remain unevaluated than seek more available but geographically further care.Conclusions In rural areas with scarce appointment availability, primary care provider diagnostic accuracy may be an important barrier of dermatology care receipt and health outcomes, especially among at‐risk populations.
Impact Although melanoma mortality rates are decreasing throughout the US, little is known about why rates in Maine continue to rise. This study applied a comprehensive approach to identify several patient and system access barriers to dermatology care in one underserved rural regional health system. While specific to this population and large service area, these findings will inform improvement efforts here and support broader future research efforts aimed at understanding and improving health outcomes in this rural state.
- Free Publicly Accessible Full Text
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Accepted Manuscript1.0
- Journal Article:
- https://doi.org/10.1017/S1478951518001062
