The Palliative Care Information Needs of Patients with Amyotrophic Lateral Sclerosis and their Informal Caregivers: A Scoping Review.

CONTEXT: Amyotrophic Lateral Sclerosis (ALS) is a fatal neurodegenerative disease, associated with impaired quality of life for patients and caregivers. As treatment is largely supportive, early involvement of palliative care (PC) is recommended as standard of care. Despite this, literature surrounding PC information needs is limited. OBJECTIVES: To explore the PC information needs of patients with ALS and their caregivers and identify gaps in the literature. METHODS: A scoping review using MEDLINE, EMBASE, CINAHL and PsycINFO databases (2000-2019) was conducted. Articles examining PC information needs as stated by ALS patients and/or current/bereaved caregivers were included. Studies examining other diagnoses and those focused on healthcare workers were excluded. Thematic synthesis was used to summarize and identify prevalent domains and themes in the literature. RESULTS: 581 articles underwent primary screening, with thirty-two ultimately included (26 original articles, six reviews). Fourteen examined information needs of both patients and caregivers, 13 caregivers only, 5 patients only. The most common PC information needs were as follows: for patients, disease course/prognosis (n = 10), general disease information (n = 9), decision-making (n = 7) and symptoms (n = 6); for caregivers, services and resources (n = 15), disease course/prognosis (n = 14), general disease information (n = 13) and skills (n = 10). There was substantial variability in information needs, both between patients and caregivers and among members of the same group. CONCLUSION: ALS patients and caregivers have unique and varying PC information needs. Future research should better characterize these needs to improve patient and caregiver quality of life. The delivery of information must be tailored to individual patient or caregiver preferences.

Implementation of the Operating Room Black Box Research Program at the Ottawa Hospital Through Patient, Clinical, and Organizational Engagement: Case Study.

BACKGROUND: A large proportion of surgical patient harm is preventable; yet, our ability to systematically learn from these incidents and improve clinical practice remains limited. The Operating Room Black Box was developed to address the need for comprehensive assessments of clinical performance in the operating room. It captures synchronized audio, video, patient, and environmental clinical data in real time, which are subsequently analyzed by a combination of expert raters and software-based algorithms. Despite its significant potential to facilitate research and practice improvement, there are many potential implementation challenges at the institutional, clinician, and patient level. This paper summarizes our approach to implementation of the Operating Room Black Box at a large academic Canadian center. OBJECTIVE: We aimed to contribute to the development of evidence-based best practices for implementing innovative technology in the operating room for direct observation of the clinical performance by using the case of the Operating Room Black Box. Specifically, we outline the systematic approach to the Operating Room Black Box implementation undertaken at our center. METHODS: Our implementation approach included seeking support from hospital leadership; building frontline support and a team of champions among patients, nurses, anesthesiologists, and surgeons; accounting for stakeholder perceptions using theory-informed qualitative interviews; engaging patients; and documenting the implementation process, including barriers and facilitators, using the consolidated framework for implementation research. RESULTS: During the 12-month implementation period, we conducted 23 stakeholder engagement activities with over 200 participants. We recruited 10 clinician champions representing nursing, anesthesia, and surgery. We formally interviewed 15 patients and 17 perioperative clinicians and identified key themes to include in an information campaign run as part of the implementation process. Two patient partners were engaged and advised on communications as well as grant and protocol development. Many anticipated and unanticipated challenges were encountered at all levels. Implementation was ultimately successful, with the Operating Room Black Box installed in August 2018, and data collection beginning shortly thereafter. CONCLUSIONS: This paper represents the first step toward evidence-guided implementation of technologies for direct observation of performance for research and quality improvement in surgery. With technology increasingly being used in health care settings, the health care community should aim to optimize implementation processes in the best interest of health care professionals and patients.

Retention and Migration of Rwandan Anesthesiologists: A Qualitative Study.

BACKGROUND: Health care professional migration continues to challenge countries where the lack of surgical and anesthesia specialists results in being unable to address the global burden of surgical disease in their populations. Medical migration is particularly damaging to health care systems that are just beginning to scale up capacity building of human resources for health. Anesthesiologists are scarce in low-resource settings. Defining reasons why anesthesiologists leave their country of training through in-depth interviews may provide guidance to policy makers and academic organizations on how to retain valuable health professionals. METHODS: There were 24 anesthesiologists eligible to participate in this qualitative interview study, 15 of whom are currently practicing in Rwanda and 9 had left the country. From the eligible group, interviews were conducted with 13 currently practicing in Rwanda and 2 who had left to practice elsewhere. In-depth interviews of approximately 60 minutes were used to define themes influencing retention and migration among anesthesiologists in Rwanda. Interviews were conducted using a semistructured guide and continued until theoretical sufficiency was reached. Thematic analysis was done by 4 members of the research team using open coding to inductively identify themes. RESULTS: Interpretation of results used the framework categorizing themes into push, pull, stick, and stay to describe factors that influence migration, or the potential for migration, of anesthesiologists in Rwanda. While adequate salary is essential to retention of anesthesiologists in Rwanda, other factors such as lack of equipment and medication for safe anesthesia, isolation, and demoralization are strong push factors. Conversely, a rich academic life and optimism for the future encourage anesthesiologists to stay. CONCLUSIONS: Our study suggests that better clinical resources and equipment, a more supportive community of practice, and advocacy by mentors and academic partners could encourage more staff anesthesiologists to stay and work in Rwanda.

A qualitative study of bereaved family members with complicated grief following a death in the intensive care unit.

PURPOSE: Grief is a normal reaction, and most family members (FMs) experience grief following a death. Typically, grief subsides without any major psychological or medical impairment. Nevertheless, some FMs may experience complicated grief (CG) reactions, with symptoms lasting months or years, and CG is particularly prominent among FMs of those who die in the intensive care unit (ICU). The purpose of this study was to examine how FMs experience grief, particularly CG, to inform future early screening and support programs in the ICU. METHODS: This was a multicentre qualitative study focusing on semi-structured interviews with FMs who displayed symptoms of CG. Family members of patients who died in the ICU and who had a six-month inventory of CG score > 25 were included. Semi-structured interviews were conducted with FMs post-loss, with follow-up interviews three months after the initial interviews. RESULTS: Major themes identified following thematic analysis from eight participants with CG included 1) ante-mortem experience: the impact of the ICU experience prior to death of a loved on subsequent grief; 2) post-mortem experience: unpredictable post death reactions; 3) coping strategies: techniques used to reduce the severity of grief reactions; 4) sources of support: focusing on resources that the FM draws from for emotional support; and 5) perspectives on future ICU bereavement screening and support programs: advice that FM participants provided for future bereavement support. CONCLUSION: Bereaved FMs with CG described their experiences with grief, how ICU events influenced their bereavement, their coping strategies and sources of support, and their advice for future bereavement support programs for FMs of deceased ICU patients.

RéSUMé: OBJECTIF: Le deuil est une réaction normale et la plupart des membres d'une famille l'éprouvent après un décès. Habituellement, le deuil décroit sans laisser de troubles psychologiques ou médicaux majeurs. Néanmoins, certains membres d'une famille peuvent présenter des réactions de deuil compliquées, avec des symptômes durant des mois ou des années et ce deuil compliqué est particulièrement visible lorsqu'un membre de la famille est décédé dans une unité de soins intensifs (USI). Cette étude avait pour objectif d'examiner comment les membres d'une famille vivent un deuil, en particulier un deuil compliqué, pour renseigner de futurs programmes de dépistage précoce et de soutien en USI. MéTHODES: Il s'est agi d'une étude qualitative multicentrique utilisant principalement des entretiens semi-structurés avec des membres de familles qui présentaient des symptômes de deuil compliqué. Des membres de la famille de patients décédés en USI qui dans les derniers 6 mois avaient un score > 25 au questionnaire de deuil compliqué ont été inclus. Les entretiens semi-structurés ont été menés après le décès avec des membres de la famille et des entretiens de suivi ont eu lieu trois mois après l'entretien initial. RéSULTATS: Les principaux thèmes identifiés après une analyse thématique de huit participants ayant un deuil compliqué ont inclus : 1) le vécu avant le décès : l'impact de l'expérience de l'USI avant le décès d'un être cher sur le deuil qui a suivi; 2) le vécu après le décès : les réactions imprévisibles après le décès; 3) les stratégies de réponse face au stress : Les techniques utilisées pour réduire les réactions de deuil; 4) les sources de soutien : en se concentrant sur les ressources que le membre de la famille utilise pour un soutien émotionnel; et 5) le point de vue sur de futurs programmes de dépistage et de soutien en USI : les conseils que les membres participants des familles ont donnés pour un futur soutien du deuil. CONCLUSION: Les membres de familles endeuillées présentant un deuil compliqué ont décrit leur vécu du deuil, comment les événements vécus en USI l'ont influencé, leurs stratégies de réponse et la source des soutiens utilisés, ainsi que leurs conseils pour de futurs programmes de soutien du deuil destinés aux familles de patients décédés en USI.

Exploring stakeholder perceptions around implementation of the Operating Room Black Box for patient safety research: a qualitative study using the theoretical domains framework.

BACKGROUND: Systematically observing clinical performance in the operating room (OR) to support patient safety initiatives faces numerous logistical and methodological challenges. These may be solved by new audio-video recording technologies like the OR Black Box, which is a tool similar to black boxes in aviation. This study aimed to identify barriers and enablers that may influence patients', clinicians' and senior leadership team members' support of the OR Black Box in order to guide its future implementation. METHODS: Patients, clinicians and senior leadership team members were recruited to participate in semistructured interviews informed by the theoretical domains framework (TDF) to identify factors relevant to planning OR Black Box implementation. Deidentified interview transcripts were analysed in duplicate following a TDF coding structure. RESULTS: Data saturation was achieved at 15 patients, 17 clinicians and 9 senior leadership team members. Seven domains were relevant for patients, nine for clinicians and four for senior leadership. Knowledge and Beliefs about consequences were barriers and enablers for all three groups. Memory, attention and decision processes and Social influences were enablers for both clinicians and senior leadership. Environmental context and resources, Emotion and Behavioural regulation were found to be barriers and enablers for both clinicians and patients. Social/professional role and identity and Reinforcement were enablers for patients only and Optimism and Intentions were barriers and enablers to clinicians. CONCLUSIONS: While most stakeholders were supportive of the OR Black Box, we identified many key areas that need to be addressed during its implementation. It is critical to ensure all stakeholders have adequate and accurate information about the OR Black Box system and research goals, and that the OR Black Box is positioned as a patient safety initiative for learning from and improving practice.