The development and validation of a conceptual definition of avoidable transitions from long-term care to the emergency department: A mixed methods study.

Background/Objectives: Transitions to and from Emergency Departments (EDs) can be detrimental to long-term care (LTC) residents and burden the healthcare system. While reducing avoidable transfers is imperative, various terms are used interchangeably including inappropriate, preventable, or unnecessary transitions. Our study objectives were to develop a conceptual definition of avoidable LTC-ED transitions and to verify the level of stakeholder agreement with this definition. Methods: The EXamining Aged Care Transitions study adopted an exploratory sequential mixed-method design. The study was conducted in 2015-2016 in 16 LTC facilities, 1 ED, and 1 Emergency Medical Service (EMS) in a major urban center in western Canada. Phase 1 included 80 participants, (healthcare aides, licensed practical nurses, registered nurses, LTC managers, family members of residents, and EMS staff). We conducted semistructured interviews (n = 25) and focus groups (n = 19). In Phase 2, 327 ED staff, EMS staff, LTC staff, and medical directors responded to a survey based on the qualitative findings. Results: Avoidable transitions were attributed to limited resources in LTC, insufficient preventive care, and resident or family wishes. The definition generated was: A transition of an LTC resident to the ED is considered avoidable if: (a) Diagnostic testing, medical assessment, and treatment can be accessed in a timely manner by other means; (b) the reasons for a transfer are unclear and the transition would increase the disorientation, pain, or discomfort of a resident, outweighing a clear benefit of a transfer; and (c) the transition is against the wishes expressed by the resident over time, including through informal and undocumented conversations. There was a high level of agreement with the definition across the four participant groups. Conclusions and Implications: To effectively reduce LTC resident avoidable transitions, stakeholders must share a common definition. Our conceptual definition may significantly contribute to improved care for LTC residents.

Understanding Nurse Perceptions of Caring for Patients With Alcohol Use Disorder: A Cross-Sectional Study.

BACKGROUND: Alcohol use disorder (AUD), the problematic consumption of alcohol, affects 107 million people worldwide. Individuals with AUD experience high morbidity and increased mortality. Nurses practicing in acute care are ideally positioned to deliver quality interventions to patients with AUD, including screening and brief intervention; formal training and assessment of baseline knowledge, attitudes, and perceptions are necessary. AIMS AND OBJECTIVES: The aim of this study was to explore the knowledge, attitudes, and perceptions of acute care nurses caring for patients with AUD. DESIGN: This study used a cross-sectional survey design. METHODS: The Survey of Attitudes and Perceptions was completed by 93 nurses working in six acute care centers (seven medicine units) across Alberta. Data were analyzed using descriptive and inferential statistics. RESULTS: Few participants reported receiving any prior structured training on AUD, with the majority reporting limited knowledge of alcohol and the effects of alcohol consumption. Although most participants said that caring for patients with AUD was a part of their professional role, few felt satisfied or motivated to work with this group of patients. Responses to individual questions or subdomains of the survey did not significantly differ by length of time in professional role, employment status, or sex. CONCLUSION: Our results indicate that nurses need to learn more about caring for patients with AUD. Developing tailored educational interventions that are mindful of the importance of knowledge, support, satisfaction, and motivation is necessary to improve the quality of care for patients with AUD.

Identifying opportunities for hepatic encephalopathy self-management: A mixed methods systematic review and synthesis.

Background: Hepatic encephalopathy (HE) in cirrhosis is an extremely challenging complication for patients and care partners. To identify potentially modifiable factors to enhance HE self-management strategies, we conducted a synthesis of quantitative and qualitative research about real-world HE behaviours, knowledge, and experiences. Methods: Using the EPPI-Centre's mixed methods synthesis procedure, a systematic literature search in five databases was completed; methods of selected articles underwent critical appraisal followed by descriptive analysis and coded line-by-line of content. Through refutational translation, the findings from the quantitative and qualitative syntheses were juxtaposed to highlight congruencies, incongruencies, or gaps. These findings informed generation of cross-analytical themes that were transformed into action statements. Results: The quantitative narrative review of synthesis (n = 17) generated four themes (patients had low awareness of HE and low treatment adherence rates, physicians had a non-uniform approach to non-pharmaceutical therapies). Meta-aggregation of qualitative data from six articles yielded three themes (patients and care partners had low levels of HE awareness, were unfamiliar with HE self-management, and were adherent to treatments). Comparison of findings revealed three congruencies, two gaps, and one incongruency. The combined synthesis yielded two self-management themes: universal patient-oriented cirrhosis HE education and ensuring each health care encounter systematically addresses HE to guarantee health care is continuously modified to meet their needs. Conclusions: By drawing on elements of Bloom's Taxonomy and distributed knowledge networks, deliberate patient-oriented HE messaging at all health care encounters is greatly needed to improve health outcomes and reduce care burdens related to HE.

Experiencing Trauma During or Before Pregnancy: Qualitative Secondary Analysis After Two Disasters.

BACKGROUND: Despite the existing knowledge about stress, trauma and pregnancy and maternal stress during natural disasters, little is known about what types of trauma pregnant or preconception women experience during these disasters. In May 2016, the worst natural disaster in modern Canadian history required the evacuation of nearly 90,000 residents of the Fort McMurray Wood Buffalo (FMWB) area of northern Alberta. Among the thousands of evacuees were an estimated 1850 women who were pregnant or soon to conceive. In August 2017, Hurricane Harvey devastated areas of the United States including Texas, with 30,000 people forced to flee their homes due to the intense flooding. OBJECTIVE: To explore immediate and past traumatic experiences of pregnant or preconception women who experienced one of two natural disasters (a wildfire and a hurricane) as captured in their expressive writing. Research questions were: (1) What trauma did pregnant or preconception women experience during the fire and the hurricane? (2) What past traumatic experiences, apart from the disasters, did the women discuss in their expressive writing? METHODS: A qualitative secondary analysis of expressive writing using thematic content analysis was conducted on the expressive writing of 50 pregnant or preconception women who experienced the 2016 Fort McMurray Wood Buffalo Wildfire (n = 25) and the 2017 Houston Hurricane Harvey (n = 25) Narrative data in the form of expressive writing entries from participants of two primary studies were thematically analyzed. One of the expressive writing questions was used in this analysis: "What is the most traumatic, upsetting experience of your entire life, especially that you have never discussed in great detail with others?" NVivo 12 supported thematic content analysis. RESULTS: For some women, the disasters elicited immense fear and anxiety that surpassed previous traumatic life events. Others, however, disclosed significant past traumas that continue to impact them, including betrayal by a loved one, abuse, maternal health complications, and illness. CONCLUSION: We recommend a strengths-based and trauma-informed care approach in both maternal health and post-disaster relief care.

An Evaluation of Online Cirrhosis-related Information Intended for Patients and Caregivers.

With nearly 70% of American adults seeking online health information,1 the internet represents a powerful space to provide patients with evidence-based, usable education about their chronic conditions. Although effective patient-oriented communication recommendations are available, the accessibility, reliability, and accuracy of online health content is largely unmonitored or evaluated. In a complex chronic disease, such as cirrhosis, understanding the online information landscape specific to patients can provide insight into resources that are available to support their self-management behaviors and to fill knowledge gaps.

Nigerian Health Care Providers and Diabetes Self-Management Support: Their Perspectives and Practices.

Nigeria struggles to reframe its traditional acute-care disease approach to health care to accommodate rising needs for chronic disease care. This interpretive descriptive study explored Nigerian healthcare providers' (HCPs) perspectives, experiences, and practices related to self-management support (SMS). Observational and experiential data were gathered from 19 HCPs at two urban hospitals in Southeastern Nigeria (seven physicians, four nurses, five dietitians/nutritionists, and three health educators). There were four themes: (a) compliance-oriented medical model, (b) SMS as advice, informal counseling, and education, (c) navigating the sociocultural terrain, and (d) workarounds. Nigerian HCPs perspectives and SMS practices were characterized by attempts to foster compliance with healthcare instructions within a traditional biomedical model. Participants enhanced patient support using specific strategies to bypass structural system obstacles. These findings demonstrate the need to reevaluate the current understanding of SMS in Nigeria and its practice.

Cracks in the foundation: The experience of care aides in long-term care homes during the COVID-19 pandemic.

BACKGROUND: Care aides (certified nursing assistants, personal support workers) are the largest workforce in long-term care (LTC) homes (nursing homes). They provide as much as 90% of direct care to residents. Their health and well-being directly affect both quality of care and quality of life for residents. The aim of this study was to understand the impact of COVID-19 on care aides working in LTC homes during the first year of the pandemic. METHODS: We conducted semi-structured interviews with a convenience sample of 52 care aides from 8 LTC homes in Alberta and one in British Columbia, Canada, between January and April 2021. Nursing homes were purposively selected across: (1) ownership model and (2) COVID impact (the rate of COVID infections reported from March to December 2020). Interviews were recorded and analyzed using inductive content analysis. RESULTS: Care aides were mainly female (94%) and older (74% aged 40 years or older). Most spoke English as an additional language (76%), 54% worked full-time in LTC homes, and 37% worked multiple positions before "one worksite policies" were implemented. Two themes emerged from our analysis: (1) Care aides experienced mental and emotional distress from enforcing resident isolation, grief related to resident deaths, fear of contracting and spreading COVID-19, increased workload combined with staffing shortages, and rapidly changing policies. (2) Care aides' resilience was supported by their strong relationships, faith and community, and capacity to maintain positive attitudes. CONCLUSIONS: These findings suggest significant, ongoing adverse effects for care aides in LTC homes from working through the COVID-19 pandemic. Our data demonstrate the considerable strength of this occupational group. Our results emphasize the urgent need to appropriately and meaningfully support care aides' mental health and well-being and adequately resource this workforce. We recommend improved policy guidelines and interventions.

An Interpretive Description of Sociocultural Influences on Diabetes Self-Management Support in Nigeria.

The purpose of this study is to explore how Nigeria's social and cultural environment influences professional diabetes self-management support practices. This interpretive descriptive study is based on two diabetes clinics in southeastern Nigeria. Nineteen healthcare providers, including nurses, were purposely selected and engaged in participant observation and interviews. Concurrent data generation and analysis facilitated iterative constant comparative analysis. Findings show significant factors influencing diabetes self-management support include belief in the supernatural origin of diabetes, individual-family interdependence, myths and limited understanding of diabetes, lack of health insurance, poverty, and the rigidity of a hierarchical acute care model of diabetes services. Thus, there is an urgent need to adapt diabetes self-management support strategies to fit people's contexts. By doing so, specific challenges in the healthcare system can directly be addressed while capitalizing on identified strengths and adapting select strategies that constructively foster person-centered and culturally appropriate care.

This Was My Crimean War: COVID-19 Experiences of Nursing Home Leaders.

OBJECTIVE: To describe professional and personal experiences of nursing home care leaders during early waves of the COVID-19 pandemic. DESIGN: Qualitative interpretive description. SETTING AND PARTICIPANTS: Eight sites across 2 Canadian provinces. Sites varied by COVID-19 status (low or high), size (<120 or ≥120 beds), and ownership model (for-profit or not-for-profit). We recruited 21 leaders as participants: 14 managers and 7 directors of care. METHODS: Remote Zoom-assisted semi-structured interviews conducted from January to April 2021. Concurrent data generation and inductive content analysis occurred throughout. Sampling ceased once we reached sufficient analytic variation and richness to answer research questions. RESULTS: Most participants were female, ≥50 years of age, and born in Canada. We found 4 major themes. (1) Responsibility to protect: Extreme precautions were employed to protect residents, staff, and leaders' families. Leaders experienced profound distress when COVID-19 infiltrated their care homes. (2) Overwhelming workloads: Changing public health orders and redeployment to pandemic-related activities caused administrative chaos. Leaders worked double shifts to cope with pandemic demands and maintain their usual work. (3) Mental and emotional toll: All participants reported symptoms of anxiety, depression, and insomnia, leading to ongoing exhaustion. Shifting staff focus from caring to custodial enforcement of isolation caused considerable distress, guilt, and grief. (4) Moving forward: The pandemic spotlighted deficiencies in the nursing home context that lead to inadequate quality of resident care and staff burnout. Some leaders indicated their pandemic experience signaled an unanticipated end to their careers. CONCLUSIONS AND IMPLICATIONS: Nursing home leaders faced mental distress and inordinate workloads during the pandemic. This is an urgent call for systemic change to improve working conditions for leaders and quality of care and quality of life for residents. Nursing home leaders are at increased risk of burnout, which must be addressed to mitigate attrition in the sector.

Assessing Patient Proficiency with Internet-Connected Technology and Their Preferences for E-Health in Cirrhosis.

There is a rapidly evolving need for e-health to support chronic disease self-management and connect patients with their healthcare teams. Patients with cirrhosis have a high symptom burden, significant comorbidities, and a range of psychological and cognitive issues. Patients with cirrhosis were assessed for their readiness and interest in e-health. Adults attending one of two outpatient cirrhosis clinics in Alberta were recruited. Eligible participants were not required to own or have experience with digital technologies or the Internet. Medical history, socioeconomic status, and attitudes regarding e-health, the Computer Proficiency Questionnaire, and the Mobile Device Proficiency Questionnaire were used to describe participants' knowledge and skills. Of the 117 recruited patients, 68.4% owned a computer and 84.6% owned a mobile device. Patients had mean proficiency scores of 72.8% (SD 25.9%) and 69.3% (SD 26.4%) for these devices, respectively. In multiple regression analyses, significant predictors of device proficiency were age, education, and household income. Most patients (78.7%) were confident they could participate in videoconferencing after training and most (61.5%) were interested in an online personalized health management program. This diverse group of patients with cirrhosis had technology ownership, proficiency, and online behaviours similar to the general population. Moreover, the patients were very receptive to e-health if training was provided. This promising data is timely given the unique demands of COVID-19 and its influence on self-management and healthcare delivery to a vulnerable population.

Becoming scholars in an online cohort of a PhD in nursing program.

The goal of this descriptive qualitative study was to examine the views of students about their experience and development as scholars during the first two years of an online cohort nursing doctoral program. A secondary goal was to seek the views of faculty members very involved in the program. Semi-structured interviews were conducted with 10 of the 13 students of the first two online cohorts and five faculty members. Four themes emerged from the data: adjusting to the program; the group as emotional and academic support; reflections on teaching and learning; and becoming a scholar. The findings suggest that the students were developing as scholars, and that the cohort model was a source of support for them. Similar to other PhD students, transition into doctoral education necessitated finding a new balance between other commitments and doctoral studies. Providing opportunities to engage with faculty outside of courses is important.

To ring or not to ring: An interpretive description of cancer patients and caregivers exiting treatment.

The "ringing of the bell" (RTB) ritual upon the completion of cancer treatment is a common tradition in many centres. There is a paucity of research investigating the impact of this experience on the cancer patient and their caregivers exiting treatment. The purpose of this study was to identify key concepts within the experiences of cancer patients and their caregivers related to the ritual of RTB. An interpretive description (ID) approach was used including open-ended interviews with two cancer patients and their two caregivers. All four participants perceived the experience of RTB as being a positive aspect in the transition out of active cancer treatment. Moreover, RTB created a sense of community and was an important milestone that was symbolic of returning back to "normal life" after cancer treatment. Future work should examine the effects of rituals such as ringing the bell among diverse patient populations and across the cancer transition continuum.

La cloche de l'espoir : étude descriptive interprétative de l'expérience des patients atteints de cancer et des proches aidants à la fin du traitement.

Sonner la ≪ cloche de l'espoir ≫ à la fin du traitement est une tradition courante dans de nombreux établissements de soins du cancer. Peu de recherches ont toutefois étudié l'effet de ce rituel sur les patients et les proches aidants. L'objectif de la présente étude est donc de déterminer les concepts clés qui se dégagent de l'expérience des patients atteints de cancer et des proches qui accomplissent ce rituel. L'étude utilise une approche descriptive interprétative, notamment sous forme d'entrevues à réponses ouvertes réalisées auprès de deux patients et des deux proches aidants qui les accompagnaient. Tous ont perçu le rituel de la cloche de l'espoir comme une expérience de transition positive marquant la fin du traitement actif. De plus, le rituel créait un esprit de communauté et constituait une étape importante symbolisant le retour à la ≪ vie normale ≫. Les recherches à venir devront examiner l'effet des rituels, comme celui de la cloche de l'espoir, auprès de différentes populations de patients et à différents points de transition de l'expérience du cancer.

The cirrhosis care Alberta (CCAB) protocol: implementing an evidence-based best practice order set for the management of liver cirrhosis - a hybrid type I effectiveness-implementation trial.

BACKGROUND: Liver cirrhosis is a leading cause of morbidity, premature mortality and acute care utilization in patients with digestive disease. In the province of Alberta, hospital readmission rates for patients with cirrhosis are estimated at 44% at 90 days. For hospitalized patients, multiple care gaps exist, the most notable stemming from i) the lack of a structured approach to best practice care for cirrhosis complications, ii) the lack of a structured approach to broader health needs and iii) suboptimal preparation for transition of care into the community. Cirrhosis Care Alberta (CCAB) is a 4-year multi-component pragmatic trial which aims to address these gaps. The proposed intervention is initiated at the time of hospitalization through implementation of a clinical information system embedded electronic order set for delivering evidence-based best practices under real-world conditions. The overarching objective of the CCAB trial is to demonstrate effectiveness and implementation feasibility for use of the order set in routine patient care within eight hospital sites in Alberta. METHODS: A mixed methods hybrid type I effectiveness-implementation design will be used to evaluate the effectiveness of the order set intervention. The primary outcome is a reduction in 90-day cumulative length of stay. Implementation outcomes such as reach, adoption, fidelity and maintenance will also be evaluated alongside other patient and service outcomes such as readmission rates, quality of care and cost-effectiveness. This theory-based trial will be guided by Normalization Process Theory, Consolidated Framework on Implementation Research (CFIR) and the Reach-Effectiveness-Adoption-Implementation-Maintenance (RE-AIM) Framework. DISCUSSION: The CCAB project is unique in its breadth, both in the comprehensiveness of the multi-component order set and also for the breadth of its roll-out. Lessons learned will ultimately inform the feasibility and effectiveness of this approach in "real-world" conditions as well as adoption and adaptation of these best practices within the rest of Alberta, other provinces in Canada, and beyond. TRIAL REGISTRATION: ClinicalTrials.gov: NCT04149223, November 4, 2019.

Long-Term Care Health Care Aides' Perceptions of Decision-Making Processes in Transferring Residents to Acute Care Services.

Most transfers of long-term care (LTC) facility residents to the emergency department (ED) via 911 calls are necessary. Avoidable transfers can have adverse effects including increased confusion and dehydration. Around 20% of transfers are perceived to be avoidable or unnecessary, yet decision making around transfers is complex and poorly understood. Using a qualitative-focused ethnographic approach, we examined 20 health care aides' (HCAs) perceptions of decision processes leading to transfer using experiential interview data. Inductive analysis throughout iterative data collection and analysis illuminated how HCAs' familiarity with residents make them vital in initiating care processes. Hierarchical reporting structures influenced HCAs' perceptions of nurse responsiveness to their concerns about resident condition, which influenced communications related to transfers. Communication processes in LTC facilities and the value placed on HCA concerns are inconsistent. There is an urgent need to improve conceptualization of HCA roles and communication structures in LTCs.

An evolutionary concept analysis of "patients' values".

BACKGROUND: Patients' values are everywhere and nowhere in nursing: frequently invoked and associated with effective nursing care but seldom explicitly defined or subject to dedicated analysis. Clarification of the concept of patients' values is pivotal because respecting and supporting patients' values are widely recognized as crucial for ethical nursing care. Despite this and the pervasive employment of the term patients' values in theories, approaches, and clinical guidelines, the concept remains ambiguous. PURPOSE: We sought to understand the key elements of the concept by investigating its use in theoretical and empirical literature. METHOD: This study used Rodgers' evolutionary concept analysis approach. FINDINGS: We found that values are core individual beliefs that function in hierarchical systems; however, in the context of disease, the priority assigned to values by the individual may change. This is important, given that values play a foundational role in health-related decisions, such as in the context of chronic diseases. DISCUSSION: Values are influenced by both individual intrinsic needs and the social context, but importantly, are involved in guiding decision-making. The attributes of the values may vary according to the context of the disease, the type of disease, and the decision at hand.

A mixed methods randomised control trial to evaluate the effectiveness of the journey to social inclusion - phase 2 intervention for chronically homeless adults: study protocol.

BACKGROUND: Chronic homelessness is a problem characterised by longstanding inability to attain or maintain secure accommodation. Longitudinal research with homeless populations is challenging, and randomised controlled trials that evaluate the effectiveness of intensive, case management interventions aimed at improving housing and health-related outcomes for chronically homelessness people are scant. More research is needed to inform programmatic design and policy frameworks in this area. This study protocol details an evaluation of the Journey to Social Inclusion - Phase 2 program, an intervention designed to reduce homelessness and improve outcomes in chronically homeless adults. METHODS/DESIGN: J2SI Phase 2 is a three-year, mixed methods, multi-site, RCT that enrolled 186 participants aged 25 to 50 years between 07 January 2016 and 30 September 2016 in Melbourne. The intervention group (n = 90 recruited) receives the J2SI Phase 2 program, a trauma-informed intervention that integrates intensive case management and service coordination; transition to housing and support to sustain tenancy; and support to build social connections, obtain employment and foster independence. The comparison group (n = 96 recruited) receives standard service provision. Prior to randomisation, participants completed a baseline survey. Follow-up surveys will be completed every six months for three years (six in total). In addition to self-report data on history of homelessness and housing, physical and mental health, substance use, quality of life, social connectedness and public service utilisation, linked administrative data on participants' public services utilisation (e.g., hospitalisation, justice system) will be obtained for the three-year period pre- and post-randomisation. Semi-structured, qualitative interviews will be conducted with a randomly selected subset of participants and service providers at three time-points to explore changes in key outcome variables and to examine individual experiences with the intervention and standard service provision. An economic evaluation of the intervention and associated costs will also be undertaken. DISCUSSION: Results of this trial will provide robust evidence on the effectiveness of J2SI Phase 2 compared to standard service provision. If the intervention demonstrates effectiveness in improving housing, health, quality-of-life, and other social outcomes, it may be considered for broader national and international dissemination to improve outcomes among chronically homeless adults. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12616000162415 (retrospectively registered 10-February-2016).

Parents' experiences with pediatric chronic pain.

Introduction: Pediatric chronic pain affects 15%-39% of children. Chronic pain can have significant negative effects on a child's physical functioning, psychological and cognitive functioning, quality of life, and social functioning. Parents of children with chronic pain have reported being affected by their child's condition. There have been few studies exploring the experiences of parents of children with chronic pain through a qualitative descriptive lens. Methods: Thirteen parents from a pediatric chronic pain clinic participated in semistructured interviews. Concurrent data collection and analysis occurred to allow for follow-up of ideas that emerged during analysis. Three phases of analysis occurred: coding, categorizing, and developing themes. Results: Three themes were developed: (1) Parents' emotional journey; (2) chronic pain affects the entire family; and (3) social support is critical. Parents described emotions caused by the arduous process of obtaining a chronic pain diagnosis, followed by difficulties finding strategies to help their child manage the pain. Family life was affected because special accommodations often had to be made. Families were affected financially, incurring costs due to time off of work or additional therapies. Finally, parents stressed the importance of a strong social support network to provide assistance and flexibility for the changing needs of their child. Discussion: This research identified a better understanding of the impact of pediatric chronic pain on parents. These findings can be used to provide and promote more effective treatments and education to improve the psychological, physical, and social well-being of children with pediatric chronic pain and their families.

Introduction: La douleur chronique pédiatrique affecte de 15 % à 39 % des enfants. La douleur chronique peut avoir des effets négatifs importants sur le fonctionnement physique, psychologique et cognitif des enfants, de même que sur leur qualité de vie et leur fonctionnement social. Il a été établi que les parents des enfants souffrant de douleur chronique sont affectés par l'état de leur enfants. Il y a peu d'études portant sur le vécu des enfants souffrant de douleur chronique dans une optique descriptive analytique.Méthodes: Treize parents d'une clinique de la douleur chronique pédiatrique ont participé à des entrevues semi-structurées. La collecte et l'analyse des données ont été effectuées de manière pour permettre de donner suite aux idées ayant émergé pendant l'analyse. Trois phases d'analyse ont été effectuées : la codification, la catégorisation et le développement des thèmes.Résultats: Trois thèmes ont été développés : 1) le parcours émotionnel des parents; 2) la douleur chronique affecte la famille toute entière; et 3) le soutien social est primordial. Les parents ont décrit les émotions occasionées par le processus ardu d'obtention d'un diagnostic de douleur chronique, auquel s'ajoutent les difficultés pour trouver des stratégies permettant d'aider leurs enfants à prendre en charge leur douleur. La vie familiale était affectée étant donné que des mesures spéciales devaient souvent être prises.. Les familles étaient touchées financièrement et devaient assumer cetains coûts en raison de la perte de temps de travail ou des frais liés à des traitements aditionnels. Finalement, les parents ont fait état de l'importance d'un solide réseau de soutien social pour les aider et leur leur donner une certaine souplesse pour faire face aux besoins changeants de leur enfant.Discussion: Cette étude a permis de mieux comprendre les répercussions de la douleur chronique pédiatrique sur les parents. Ces résultats peuvent être utilisés pour offrir et promouvoir une meilleure éducation ainsi que des traitements plus efficaces pour améliorer le bien-être psychologique, physique et social des enfants souffrant de douleur chronique pédiatrique et de leurs parents.

Patient Views on Advance Care Planning in Cirrhosis: A Qualitative Analysis.

Aim: To investigate patient experiences and perceptions of advance care planning (ACP) process in cirrhosis. Methods: Purposive sampling was used to identify and recruit participants (N = 17) from discrete patient groups: compensated with no prior decompensation, decompensated and not yet listed for transplant, transplant wait listed, medical contraindications for transplant, and low socioeconomic status. Review and discussion of local ACP videos, documents, and experiences with ACP occurred in two individual interviews and four focus groups. Data were analyzed using inductive content analysis including iterative processes of open coding, categorization, and abstraction. Results: Three overarching categories emerged: (1) lack of understanding about disease trajectories and ACP processes, (2) roles of alternate decision makers, and (3) preferences for receiving ACP information. Most patients desired advanced care-planning conversations before the onset of decompensation (specifically hepatic encephalopathy) with a care provider with whom they had a trusting, preexisting relationship. Involvement of the alternate decision makers was of critical importance to participants, as was the use of direct, easy to understand patient education tools that address practical issues. Conclusion: Our findings support the need for early advance care planning in the outpatient setting. Outpatient clinicians may play a key role in facilitating these discussions.