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1.
Nurs Philos ; 22(4): e12363, 2021 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-34288326

RESUMO

This article summarizes a virtual live-streamed panel event that occurred in August 2020 and was cosponsored by the International Philosophy of Nursing Society (IPONS) and the University of California, Irvine's Center for Nursing Philosophy. The event consisted of a series of three self-contained panel discussions focusing on the past, present and future of IPONS and was moderated by the current Chair of IPONS, Catherine Green. The first panel discussion explored the history of IPONS and the journal Nursing Philosophy. The second panel involved a reflection on the challenges of doing nursing philosophy in a research-intensive context of a Canadian university and the history and current movements in nursing philosophy in the Nordic countries. The final panel involved presentations on the future potential for philosophy in/and for nursing, the critical connections between nursing philosophy and nursing theory, dismantling racism in nursing and the potential for process philosophy to help explore nursing's unique efficacy in creating possibilities for health. The panels were followed by a lively Q&A session with participants, of which there were 252 registrants from across the globe. The event underscored the wide and diverse interests of nurses in philosophical discussion and the need for more virtual events and other connective modalities bringing nurses together to discuss and analyze the value and potential of philosophy to better understand and advance nursing theory and practice.


Assuntos
Teoria de Enfermagem , Filosofia em Enfermagem , Canadá , Humanos , Filosofia , Universidades
2.
Res Theory Nurs Pract ; 34(2): 129-143, 2020 May 01.
Artigo em Inglês | MEDLINE | ID: mdl-32457120

RESUMO

BACKGROUND AND PURPOSE: This qualitative phenomenological study explored the lived experiences of family members who have been referred to a cardiogenetics clinic following the loss of a family member to sudden cardiac death (SCD). These family members were evaluated in a Cardiogenetics Clinic in a Children's Hospital in the New York region, which utilizes an interprofessional approach to care. METHODS: A qualitative phenomenological approach was used to explore the lived experience of family members that were referred following the SCD of a family member. The researcher used hermeneutic dialectics and interviewed family members that attended the Cardiogenetics Clinic. RESULTS: Insights gained through discussion were discussed in the following themes: stories of feelings being heard, stories of meaningfulness, and stories of mutual process. This led to the transformation of the typical linear clinic process to a transformative and dynamic model for integrated delivery of care. IMPLICATIONS FOR PRACTICE: This interprofessional model of care offers information regarding SCD, a genetic profile to determine risk for SCD, an integrative collaborative approach to care as well as nursing, medical interventions, psychological support, and counseling for families.


Assuntos
Adaptação Psicológica , Pesquisa em Enfermagem Clínica/organização & administração , Morte Súbita Cardíaca , Família/psicologia , Pesar , Infarto do Miocárdio/enfermagem , Cuidados de Enfermagem/organização & administração , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , New York , Teoria de Enfermagem , Pesquisa Qualitativa
4.
Per Med ; 11(7): 631-640, 2014 Sep 01.
Artigo em Inglês | MEDLINE | ID: mdl-25431604

RESUMO

AIM: Genetic testing now makes it possible to identify specific mutations that may lead to life-threatening cardiac arrhythmias. This article presents data from a qualitative research study that explored the subjective experiences of individuals and families with cardiogenetic conditions. We focus on describing patients' experiences of psychological stresses associated with having a cardiogenetic condition, illustrating the importance of integrating psychological and medical care. This integration of care is particularly important as personalized genomic medicine continues to evolve and the implications of genetic testing have a profound effect on individuals and families. METHODS: The researchers interviewed 50 participants from 32 families. The research team used a systematic, grounded theory procedure to code and analyze interview and focus group transcripts, incorporating multiple coders at several stages of the data analysis process. RESULTS: Three major themes emerged: a bereavement trajectory associated with sudden death in the absence of prior symptoms; high anxiety about transmitting a genetic mutation; and resilience reflected in positive lifestyle changes and participation in support groups. CONCLUSION: This article identifies patient perspectives on personalized genomic medicine in cardiogenetics that can improve clinical care, including: specialized bereavement counseling; improving education about cardiogenetic conditions for medical professionals; parent guidelines for discussing cardiogenetic conditions with their children; information about support groups; and the routine inclusion of clinical psychologists in interdisciplinary treatment teams. Given recent advances in technology and decreasing costs, whole-genome sequencing is likely to become common practice in the near future. Therefore, these recommendations are likely to be relevant for other genetic conditions, as well as the entire field of personalized genomic medicine.

5.
Qual Health Res ; 24(10): 1315-28, 2014 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-25114027

RESUMO

In this article we describe a qualitative research study in which we explored individuals' subjective experiences of both genetic testing and cardiogenetic disorders. Using a grounded theory approach, we coded and analyzed interview and focus group transcripts from 50 participants. We found that just under half of the participants who received their diagnosis during the study reported difficulty understanding information about both the purpose of genetic testing and their cardiac disease. A high level of anxiety about genetic testing and cardiac symptoms exacerbated individuals' cognitive confusion. Participants reported both positive and negative interactions with the medical community, depending on health care professionals' knowledge of cardiogenetic disorders. Overall, participants expressed a range of attitudes--positive, negative, and ambivalent--toward genetic testing. We conclude with a discussion of the barriers to achieving effective clinical care for genetic conditions and offer suggestions for improving collaborative decision making between physicians and patients.


Assuntos
Arritmias Cardíacas/genética , Atitude , Testes Genéticos/estatística & dados numéricos , Adulto , Idoso , Tomada de Decisões , Feminino , Grupos Focais , Teoria Fundamentada , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Equipe de Assistência ao Paciente , Relações Médico-Paciente , Pesquisa Qualitativa
6.
Per Med ; 10(1): 73-80, 2013 Jan 01.
Artigo em Inglês | MEDLINE | ID: mdl-24496296

RESUMO

In the genomic age, the challenges presented by various inherited conditions present a compelling argument for an interdisciplinary model of care. Cardiac arrhythmias with a genetic basis, such as long QT syndrome, require clinicians with expertise in many specialties to address the complex genetic, psychological, ethical and medical issues involved in treatment. The Montefiore-Einstein Center for CardioGenetics has been established to provide personalized, interdisciplinary care for families with a history of sudden cardiac death or an acute cardiac event. Four vignettes of patient care are presented to illustrate the unique capacity of an interdisciplinary model to address genetic, psychological, ethical and medical issues. Because interdisciplinary clinics facilitate collaboration among multiple specialties, they allow for individualized, comprehensive care to be delivered to families who experience complex inherited medical conditions. As the genetic basis of many complex conditions is discovered, the advantages of an interdisciplinary approach for delivering personalized medicine will become more evident.

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