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1.
Palliat Med Rep ; 4(1): 208-213, 2023.
Article in English | MEDLINE | ID: mdl-37637761

ABSTRACT

Background: Social distancing during the COVID-19 pandemic limited how family, friends, and clinicians physically interacted with people who were dying and decreased communal opportunities for processing grief. These barriers can cause or exacerbate suffering due to loneliness while grieving. Purpose: In this article, we describe the protocol for a brief storytelling intervention designed to reduce loneliness among families, friends, and clinicians grieving the death of a person during the time of COVID-19. Methods: We trained four StoryListening doulas (SLDs) to hold a welcoming space and listen to stories with curiosity and openness. The intervention included a video StoryListening session and two brief questionnaires, filled out before and two weeks after the encounter, assessing loneliness and quality of life. During sessions, SLDs invited participants to share their story of loss in their own words and in as much detail as preferred. When participants felt a sense of story completion, SLDs shared validating statements and expressed gratitude to the participant for sharing. The video and audio for each participant's StoryListening encounter were recorded and the participant was offered an audio copy of their session.

2.
Patient Educ Couns ; 105(7): 2005-2011, 2022 07.
Article in English | MEDLINE | ID: mdl-34799186

ABSTRACT

CONTEXT: Human connection can reduce suffering and facilitate meaningful decision-making amid the often terrifying experience of hospitalization for advanced cancer. Some conversational pauses indicate human connection, but we know little about their prevalence, distribution or association with outcomes. PURPOSE: To describe the epidemiology of Connectional Silence during serious illness conversations in advanced cancer. METHODS: We audio-recorded 226 inpatient palliative care consultations at two academic centers. We identified pauses lasting 2+ seconds and distinguished Connectional Silences from other pauses, sub-categorized as either Invitational (ICS) or Emotional (ECS). We identified treatment decisional status pre-consultation from medical records and post-consultation via clinicians. Patients self-reported quality-of-life before and one day after consultation. RESULTS: Among all 6769 two-second silences, we observed 328 (4.8%) ECS and 240 (3.5%) ICS. ECS prevalence was associated with decisions favoring fewer disease-focused treatments (ORadj: 2.12; 95% CI: 1.12, 4.06). Earlier conversational ECS was associated with improved quality-of-life (p = 0.01). ICS prevalence was associated with clinicians' prognosis expectations. CONCLUSIONS: Connectional Silences during specialist serious illness conversations are associated with decision-making and improved patient quality-of-life. Further work is necessary to evaluate potential causal relationships. PRACTICE IMPLICATIONS: Pauses offer important opportunities to advance the science of human connection in serious illness decision-making.


Subject(s)
Neoplasms , Physician-Patient Relations , Communication , Critical Illness/epidemiology , Critical Illness/therapy , Humans , Neoplasms/epidemiology , Neoplasms/therapy , Palliative Care , Referral and Consultation
3.
Patient Educ Couns ; 104(11): 2616-2621, 2021 11.
Article in English | MEDLINE | ID: mdl-34353689

ABSTRACT

BACKGROUND: Understanding uncertainty in participatory decision-making requires scientific attention to interaction between what actually happens when patients, families and clinicians engage one another in conversation and the multi-level contexts in which these occur. Achieving this understanding will require conceptually grounded and scalable methods for use in large samples of people representing diversity in cultures, speaking and decision-making norms, and clinical situations. DISCUSSION: Here, we focus on serious illness and describe Conversational Stories as a scalable and conceptually grounded framework for characterizing uncertainty expression in these clinical contexts. Using actual conversations from a large direct-observation cohort study, we demonstrate how natural language processing and unsupervised machine learning methods can reveal underlying types of uncertainty stories in serious illness conversations. CONCLUSIONS: Conversational Storytelling offers a meaningful analytic framework for scalable computational methods to study uncertainty in healthcare conversations.


Subject(s)
Communication , Delivery of Health Care , Cohort Studies , Humans , Uncertainty
4.
J Mech Behav Biomed Mater ; 92: 90-96, 2019 04.
Article in English | MEDLINE | ID: mdl-30665114

ABSTRACT

Poly(vinyl alcohol) (PVA) is a synthetic, biocompatible polymer that has been widely studied for use in bioengineered tissue scaffolds due to its relatively high strength, creep resistance, water retention, and porous structure. However, PVA hydrogels traditionally exhibit low percent elongation and energy dissipation. PVA material and mechanical properties can be fine-tuned by controlling the physical, non-covalent crosslinks during hydrogel formation through various techniques; PVA scaffolds were modified with gelatin, a natural collagen derivative also capable of forming reversible hydrogen bonds. Blending in gelatin and poly(ethylene glycol) (PEG) with PVA prior to solidification formed a highly organized hydrogel with improved toughness and dynamic elasticity. Theta-gels were formed from the solidification of warm solutions and the phase separation of high molecular weight gelatin and PVA from a low molecular PEG porogen upon cooling. While PVA-gelatin hydrogels can be synthesized in this manner, the hydrogels exhibited low toughness with increased elasticity. Thus, theta-gels were additionally processed using cryo-gel fabrication techniques, which involved freezing theta-gels, lyophilizing and re-hydrating. The result was a stronger, more resilient material. We hypothesized that the increased formation of physical hydrogen bonds between the PVA and gelatin allowed for the combination of a stiffer material with energy dissipation characteristics. Rheological data suggested significant changes in the storage moduli of the new PVA-gelatin theta-cryo-gels. Elastic modulus, strain to failure, hysteresis and resilience were studied through uniaxial tension and dynamic mechanical analysis in compression.


Subject(s)
Gelatin/chemistry , Hydrogels/chemistry , Polyvinyl Alcohol/chemistry , Materials Testing , Polyethylene Glycols/chemistry , Tensile Strength
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