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1.
J Hosp Palliat Nurs ; 25(2): 82-89, 2023 04 01.
Artículo en Inglés | MEDLINE | ID: mdl-36728089

RESUMEN

Nurses play a key role in integrating palliative care into oncology. This project sought to better understand oncology nurses' perspectives about palliative care. Nurses from a community hospital were presented with a series of clinical scenarios and asked to comment on the appropriateness of palliative care in each case. A series of focus groups were held, inviting nurses' reflections about palliative care in relation to their practice. Nurses commenting on the clinical scenarios were unanimous that palliative care was appropriate in the most straightforward case: older adult, approaching the terminal phase of a cancer, having exhausted all curative treatment options, accepting death, wanting comfort, and contending with difficult symptoms. However, opinions on appropriateness varied in less straightforward cases, such as when patients did not accept death or when their cancer diagnosis was recent. In focus groups, nurses described a hybrid professional identity that integrates both oncology and palliative care. To them, this integration constituted the meaning of "cancer care." They further reflected on tensions they experience between their proximity to patients in everyday care and their (in)abilities to meet palliative care needs. Results suggest the need for stronger institutional supports of cancer nurses' palliative practice.


Asunto(s)
Enfermería de Cuidados Paliativos al Final de la Vida , Neoplasias , Humanos , Anciano , Cuidados Paliativos , Hospitales Comunitarios , Grupos Focales
2.
Health Expect ; 26(1): 463-475, 2023 02.
Artículo en Inglés | MEDLINE | ID: mdl-36447392

RESUMEN

INTRODUCTION: Social support is a protective factor in the mental health of autistic people. Furthermore, prejudice regarding autistic people is a constraint for the development of social support programmes by autistic peers. METHODS: The objective of this study is to describe the anticipated acceptability of structured peer support programmes for and by autistic persons. Fifteen key stakeholders (six autistic adults, four caregivers and five service providers) participated in in-depth semistructured interviews. A qualitative thematic analysis of the content of the verbatim was carried out. FINDINGS: We found that while a structured peer social support programme is acceptable to autistic people and caregivers, there was no consensus among service providers. The latter expressed doubts about the ability of autistic people to offer support. The framing of discussions between peers, the training of peer helpers, the support for autistic leadership and an organization that considers the communicational and sensory characteristics of autistic persons, could influence adherence to such a programme. Moreover, a space without service providers is an important condition for the acceptability of a peer support programme. CONCLUSION: A structured peer support service for and by autistic persons could be an innovative way to answer the unmet support needs of autistic people. It seems essential to anticipate potential barriers and facilitators and to communicate among health professionals to promote this approach and reduce possible prejudice about the ability of autistic people to offer support to their peers. More studies are necessary. PATIENT OR PUBLIC CONTRIBUTION: Fifteen key stakeholders who are involved in autistic people's trajectory of service and support participated in this research. We are a research team composed of healthcare professionals and researchers, in addition to one member of our team being an autistic advocate and a mental health peer-support mentor. Two members of our team are also parents of autistic children. The comprehensibility of the questions for the interview was consulted and discussed with one autistic advocate-collaborator.


Asunto(s)
Trastorno Autístico , Servicios de Salud Mental , Adulto , Niño , Humanos , Trastorno Autístico/terapia , Consejo , Salud Mental , Personal de Salud
3.
Health Soc Care Community ; 30(6): e5916-e5925, 2022 11.
Artículo en Inglés | MEDLINE | ID: mdl-36097874

RESUMEN

Optimising the discharge process for internal medicine programs is a challenge given multiple social and practical constraints in transitions from hospital to home. The objective of this study is to explore healthcare professionals' perspectives on discharge processes in internal medicine within a context of organisational reform. This is an interpretive descriptive qualitative study using in-depth individual interviews with healthcare providers. Seventeen semi-structured interviews were conducted. The study comprised a sample of 18 healthcare professionals working on two internal medicine wards in an acute care teaching hospital in Quebec. A conceptual framework comprising core aspects of the discharge process (planning, coordination, teaching and outcomes) guided data collection and analysis. Thematic analysis was applied to analyse the data. Major themes were developed by contrasting empirical data and the conceptual framework. Five themes were developed (1) Iterative discharge planning; (2) Patient and family engagement in discharge planning and discharge readiness, (3) Lack of time for discharge teaching, (4) Discharge coordination and the placement of patients and (5) Inequitable social support and resources and risk of readmission. This study highlights the inter-relationship between discharge readiness and phases of the discharge process, in particular planning and coordination. Iterative planning along with strategies to coordinate discharge constitute efforts to ensure flexible processes that respond to patients' needs and preferences. Challenges persist for healthcare professionals regarding autonomy and resources, along with reduced opportunities for patient and family engagement in decision-making.


Asunto(s)
Personal de Salud , Alta del Paciente , Humanos , Quebec , Investigación Cualitativa , Medicina Interna , Atención a la Salud
4.
Can J Kidney Health Dis ; 6: 2054358119828389, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-30792874

RESUMEN

BACKGROUND: Living donor kidney transplantation (LDKT) has several advantages over deceased donor kidney transplantation. Yet rates of living donation are declining in Canada and there exists significant interprovincial variability. Efforts to improve living donation tend to focus on the patient and barriers identified at their level, such as not knowing how to ask for a kidney or lack of education. These efforts favor those who have the means and the support to find living donors. Thus, a Canadian Institutes of Health Research (CIHR)-organized workshop recommended that education efforts to understand and remove barriers should focus on health professionals (HPs). Despite this, little attention has been paid to what they identify as barriers to discussing LDKT with their patients. OBJECTIVE: Our aim was to explore HP-identified barriers to discuss living donation with patients in 3 provinces of Canada with low (Quebec), moderate (Ontario), and high (British Columbia) rates of LDKT. DESIGN: This study consists of an interpretive descriptive approach as it enables to move beyond description and inform clinical practice. SETTING: Purposive criterion and quota sampling were used to recruit HPs from Quebec, Ontario, and British Columbia who are involved in the care of patients with kidney disease and/or with transplant coordination. PATIENTS: Not applicable. MEASUREMENTS: Semistructured interviews were conducted. The interview guide was developed based on a preliminary analytical framework and a review of the literature. METHODS: Thematic analysis was used to analyze the data stemming from the interviews. The coding process comprised of a deductive and inductive approach, and the use of a qualitative analysis software (NVivo 11). Following this, themes were identified and developed. Interviews were conducted until thematic saturation was obtained. In total, we conducted 16 telephone interviews as thematic saturation was attained. RESULTS: Six predominant themes emerged: (1) lack of communication between transplant and dialysis teams, (2) absence of referral guidelines, (3) role perception and lack of multidisciplinary involvement, (4) HP's lack of information and training, (5) negative attitudes of some HP toward LDKT, (6) patient-level barriers as defined by the HP. HPs did mention patients' attitudes and some characteristics as the main barriers to discussions about living donation; this was noted in all provinces. HPs from Ontario and British Columbia indicated multiple strategies being implemented to address some of these barriers. Those from Ontario mentioned strategies that center on the core principles of provincial-level standardization, while those from British Columbia center on engaging the entire multidisciplinary team and improved role perception. We noted a dearth of such efforts in Quebec; however, efforts around education and promotion, while tentative, have emerged. LIMITATIONS: Social desirability and selection bias. Our analysis might not be applicable to other provinces. CONCLUSIONS: HPs involved with the referral and coordination of transplantation play a major role in access to LDKT. We have identified challenges they face when discussing living donation with their patients that warrant further assessment and research to inform policy change.


CONTEXTE: La transplantation de reins provenant de donneurs vivants présente de nombreux avantages comparativement aux greffes d'organes provenant de donneurs décédés. Pourtant, les taux de greffes de reins provenant de donneurs vivants (GRDV) sont en baisse au Canada et varient beaucoup d'une province à l'autre. Actuellement, les efforts déployés se concentrent principalement sur les patients et des obstacles les touchant; le manque d'information ou le fait qu'ils ignorent comment demander un rein, notamment. Les patients ayant les moyens et le soutien pour trouver un donneur vivant sont ainsi favorisés. Un atelier organisé par l'IRSC a recommandé que les efforts visant la compréhension et l'élimination des obstacles à la GRDV se concentrent davantage sur les professionnels de la santé (PS). Néanmoins, peu d'attention a été accordée à ce que ceux-ci perçoivent comme des entraves à discuter d'une GRDV avec leurs patients. OBJECTIF: Nous voulions savoir ce que les PS de provinces canadiennes avec un taux de GRDV faible (Québec), moyen (Ontario) et élevé (Colombie-Britannique) considéraient comme des entraves à discuter de la procédure avec leurs patients. TYPE D'ÉTUDE: L'étude est une approche interprétative descriptive puisqu'elle dépasse la description et qu'elle est susceptible d'orienter la pratique clinique. CADRE: Des critères choisis à dessein et un échantillonnage par quotas ont été employés pour recruter des PS québécois, ontariens et britanno-colombiens impliqués dans les soins aux patients atteints de néphropathie et/ou dans la coordination des greffes. SUJETS: ne s'applique pas. MESURES: Des interviews semi-structurées ont été menées. Le guide de l'interview a été élaboré à partir d'une grille d'analyse préliminaire et d'une revue de la littérature. MÉTHODOLOGIE: Les données tirées des interviews ont été examinées par analyse thématique et le procédé de codage comportait une approche déductive et inductive, de même que l'utilisation d'un logiciel d'analyse qualitative (NVivo 11). Les principaux thèmes ont été dégagés puis développés, et les interviews ont été menées jusqu'à l'obtention d'une saturation thématique. Un total de 16 interviews téléphoniques a ainsi été mené. RÉSULTATS: Six principaux thèmes ont été dégagés : (1) le manque de communication entre les équipes de dialyse et de transplantation; (2) l'absence de lignes directrices pour l'aiguillage; (3) la perception des rôles et le manque d'implication de l'équipe multidisciplinaire; (4) le manque d'information et de formation de certains PS; (5) les perceptions négatives de certains PS à l'égard d'une GRDV et; (6) les difficultés liées directement aux patients. Dans chaque province sondée, les PS ont mentionné que l'attitude des patients et certaines caractéristiques consistaient les principales entraves à discuter d'une GRDV. Selon les répondants ontariens et britanno-colombiens, plusieurs stratégies sont actuellement mises en œuvre pour pallier ces difficultés. En Ontario, on mise sur l'application provinciale des principes fondamentaux de normalisation, alors qu'on se concentre plutôt sur l'implication de l'équipe multidisciplinaire et l'amélioration de la perception des rôles de chacun en Colombie-Britannique. Un manque d'efforts en ce sens a été observé au Québec, bien que de timides mesures de sensibilisation et de promotion aient émergé. LIMITES: En plus de biais de sélection et liés à l'acceptabilité sociale, notre analyse pourrait ne pas s'appliquer aux autres provinces. CONCLUSION: Les professionnels de la santé impliqués dans l'aiguillage et la coordination des greffes jouent un rôle essentiel dans l'accès à une transplantation de rein provenant d'un donneur vivant. Nous avons identifié les difficultés qu'ils perçoivent à discuter d'une GRDV avec leurs patients; des défis qui justifient une évaluation et des recherches plus poussées en vue d'éclairer les changements d'orientation.

5.
Appl Transl Genom ; 11: 27-39, 2016 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-28018847

RESUMEN

The purpose of this qualitative study is to elucidate stakeholder perceptions of, and institutional practices related to cell-based therapies and products (CTP) regulation and commercialization in Canada. The development of reproducible, safe and effective CTPs is predicated on regulatory and commercialization environments that enable innovation. Manufacturing processes constitute a critical step for CTP development in this regard. The road from CTP manufacturing to translation in the clinic, however, has yet to be paved. This study aims to fill an empirical gap in the literature by exploring how CTP manufacturing facilities navigate Canadian regulatory and commercialization environments, which together drive the translation of novel CTPs from bench to bedside. Using the multi-level model of practice-driven institutional change proposed by Smets et al., we demonstrate how CTP manufacturing practices are governed by established standards, yet meaningfully shape higher-order regulatory and commercial norms in CTP research and development. We identify four key themes that undergird such processes of innovation: 1) managing regulatory uncertainty, which stems from an inability to classify CTPs within existing regulatory categories for approval and commercialization purposes; 2) building a 'business case' whereby a CTP's market potential is determined in large part by proving its safety and effectiveness; 3) standardizing manufacturing procedures that mobilize CTPs from a research and development phase to a commercialization one; and 4) networking between researchers and regulators to develop responsible commercialization processes that reflect the uniqueness of CTPs as distinct from other biologics and medical devices.

6.
PLoS One ; 11(10): e0164347, 2016.
Artículo en Inglés | MEDLINE | ID: mdl-27755563

RESUMEN

This study aims to understand the influence of the ethical and legal issues on cloud computing adoption in the field of genomics research. To do so, we adapted Diffusion of Innovation (DoI) theory to enable understanding of how key stakeholders manage the various ethical and legal issues they encounter when adopting cloud computing. Twenty semi-structured interviews were conducted with genomics researchers, patient advocates and cloud service providers. Thematic analysis generated five major themes: 1) Getting comfortable with cloud computing; 2) Weighing the advantages and the risks of cloud computing; 3) Reconciling cloud computing with data privacy; 4) Maintaining trust and 5) Anticipating the cloud by creating the conditions for cloud adoption. Our analysis highlights the tendency among genomics researchers to gradually adopt cloud technology. Efforts made by cloud service providers to promote cloud computing adoption are confronted by researchers' perpetual cost and security concerns, along with a lack of familiarity with the technology. Further underlying those fears are researchers' legal responsibility with respect to the data that is stored on the cloud. Alternative consent mechanisms aimed at increasing patients' control over the use of their data also provide a means to circumvent various institutional and jurisdictional hurdles that restrict access by creating siloed databases. However, the risk of creating new, cloud-based silos may run counter to the goal in genomics research to increase data sharing on a global scale.


Asunto(s)
Nube Computacional/ética , Nube Computacional/legislación & jurisprudencia , Genómica , Seguridad Computacional , Bases de Datos Factuales/ética , Genómica/ética , Humanos , Almacenamiento y Recuperación de la Información/ética , Entrevistas como Asunto , Investigación
8.
BMJ Open ; 2(6)2012.
Artículo en Inglés | MEDLINE | ID: mdl-23220777

RESUMEN

OBJECTIVES: The purpose of this study was to provide a more precise definition of an integrated oncogeriatric approach (IOGA) through concept analysis. DATA SOURCES: The literature was reviewed from January 2005 to April 2011 integrating three broad terms: geriatric oncology, multidisciplinarity and integrated care delivery models. STUDY ELIGIBILITY CRITERIA: Citation selection was based on: (1) elderly cancer patients as the study population; (2) disease management and (3) case studies, intervention studies, assessments, evaluations and studies. Inclusion and exclusion criteria were refined in the course of the literature search. INTERVENTIONS: Initiatives in geriatric oncology that relate to oncology services, social support services and primary care services for elderly cancer patients. PARTICIPANTS: Elderly cancer patients aged 70 years old or more. STUDY APPRAISAL AND SYNTHESIS METHODS: Rodgers' concept analysis method was used for this study. The analysis was carried out according to thematic analysis based on the elements of the Chronic Care Model. RESULTS: The search identified 618 citations. After in-depth appraisal of 327 potential citations, 62 articles that met our inclusion criteria were included in the analysis. Three IOGA main attributes were identified, which constitute IOGA's core aspects: geriatric assessment (GA), comorbidity burden and treatment outcomes. The IOGA concept comprises two broad antecedents: coordinated healthcare delivery and primary supportive care services. Regarding the consequents of an integrated approach in geriatric oncology, the studies reviewed remain inconclusive. CONCLUSIONS: Our study highlights the pioneering character of the multidimensional IOGA concept, for which the relationship between clinical and organisational attributes, on the one hand, and contextual antecedents, on the other, is not well understood. We have yet to ascertain IOGA's consequents. IMPLICATIONS OF KEY FINDINGS: There is clearly a need for a whole-system approach to change that will provide direction for multilevel (clinical, organisational, strategic) interventions to support interdisciplinary practice, education and research.

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