RESUMEN
Purpose: Purposes of this study were to (1) develop an instrument of connectedness with health care providers (HCPs) for adolescents and young adults (AYAs) with cancer (ages 13 to 21 years); (2) evaluate the content validity of the instrument through expert panels; (3) assess the dimensionality of the instrument; (4) evaluate the internal consistency reliability of the instrument; and (5) evaluate the convergent and discriminant validity of the instrument through hypothesis testing. Methods: The Connectedness with HCPs Scale (C-HCPS) was developed and evaluated in two phases. Phase I involved generating items, having two expert panels (AYAs and clinicians; n = 13) evaluate the items for content validity, and pretesting the instrument before pilot testing (n = 6). In phase II, the psychometric properties of the instrument (dimensionality, internal consistency reliability, and convergent/discriminant validity) were evaluated (n = 101). Results: The initial exploratory factor analysis revealed that the items separated into two separate instruments. In addition to the C-HCPS, a Disconnectedness with HCPs Scale (D-HCPS) was revealed. The C-HCPS contains 35 items and the D-HCPS contains 11 items. Exploratory factor analysis suggested a five-factor solution for the C-HCPS and a two-factor solution for the D-HCPS. Internal consistency reliability of the C-HCPS and D-HCPS was 0.964 and 0.881, respectively. Good evidence of convergent and discriminant validity was demonstrated through hypothesis testing. Conclusion: Findings indicate that the C-HCPS and D-HCPS are both reliable instruments with good evidence of convergent and discriminant validity. Further exploration of these instruments using confirmatory factor analysis in a larger sample is needed.
Asunto(s)
Neoplasias/terapia , Psicometría/métodos , Adolescente , Adulto , Femenino , Personal de Salud , Humanos , Masculino , Adulto JovenRESUMEN
BACKGROUND: Adolescent/young adult (AYA) cancer survivors experience greater psychosocial distress than younger or older adults. To address their psychosocial distress, it is important that healthcare providers (HCPs) foster connectedness with AYAs; however, some HCPs' words and behaviors may actually create a sense of disconnectedness with AYAs. OBJECTIVE: The aim of this study was to describe AYA cancer survivors' experiences of disconnectedness from HCPs during cancer treatment. METHODS: This empirical phenomenological study sample included 9 AYA cancer survivors (aged 20-23 years) diagnosed during adolescence. In-person interviews were conducted using a broad data-generating question and analyzed using an adapted Colaizzi's method. RESULTS: Healthcare providers' behaviors that create disconnectedness include (1) exhibiting a lack of appreciation for AYAs' personhood, (2) inflicting unnecessary harm or discomfort, (3) being apathetic of needs and preferences, (4) treating AYAs like they have minimal rights, (5) speaking in a patronizing manner, (6) ignoring their requests, and (7) failing to be vigilant for basic needs. When AYAs experience disconnectedness, they feel dehumanized, powerless, and a lack of self-determination. CONCLUSION: Findings highlight disturbing HCP behaviors that create AYA disconnectedness. Despite generally feeling connected to HCPs, AYA cancer survivors' experiences of disconnectedness leave lingering feelings of anger and resentment, even after treatment ends. Preventing disconnectedness behaviors must be a priority. IMPLICATIONS FOR PRACTICE: AYA cancer survivors' can benefit from having the opportunity to share their experiences of disconnectedness and having the chance to be autonomous in their care. Bringing awareness to HCPs about what behaviors cause disconnectedness is essential in preventing the behaviors.
Asunto(s)
Supervivientes de Cáncer/psicología , Neoplasias/terapia , Relaciones Médico-Paciente , Adaptación Psicológica , Adolescente , Ansiedad/psicología , Femenino , Personal de Salud , Humanos , Masculino , Neoplasias/psicología , Adulto JovenRESUMEN
Partnerships between academia and practice can lead to improved patient care and health system innovations. Nurse educators in both academia and practice are positioned to facilitate opportunities for students and practicing nurses to be involved in evidence-based practice (EBP) care initiatives involving academic-health care partners in clinical and/or community-based systems. Best practices in collaborative partnerships have demonstrated the significance of their far-reaching impact on patients, students, direct care nurses, and health systems. Translation of EBP knowledge to practice transforms patient outcomes and empowers nurses to address the complexity of health care systems. This article describes the process and outcomes of an academic-practice partnership facilitated by nurse educators in both academic and practice settings. The impact of the adoption of EBP projects on clinical practice, students, and practicing nurses is described. National and international implications for academic- practice partnerships are discussed. [J Contin Educ Nurs. 2019;50(6):282-288.].
Asunto(s)
Bachillerato en Enfermería/organización & administración , Enfermería Basada en la Evidencia/educación , Enfermería Basada en la Evidencia/organización & administración , Personal de Salud/educación , Relaciones Interinstitucionales , Preceptoría/organización & administración , Asociación entre el Sector Público-Privado/organización & administración , Universidades/organización & administración , Adulto , Femenino , Humanos , Masculino , Persona de Mediana EdadRESUMEN
The purpose of this study was to describe pediatric oncology nurse managers' (NMs) perspectives of palliative care/end-of-life (PC/EOL) communication. The study, guided by group-as-a-whole theory and empirical phenomenology, was part of a larger, multisite study aimed at understanding pediatric oncology nurses' experiences of PC/EOL communication. Nurses were assigned to focus groups based on length or type of experience (i.e., nurses with <1, 2-5, or >5 years' work experience and NMs). Eleven NMs from three Midwestern pediatric hospitals with large oncology programs participated in one focus group. The participants' mean years of experience was 15.8 in nursing and 12 in pediatric oncology; 90% had a BSN or higher degree; all had supervisory responsibilities. The authors identified 2,912 meaning statements, which were then analyzed using Colaizzi's method. Findings include NMs' overall experience of "Fostering a Caring Climate," which includes three core themes: (1) Imprint of Initial Grief Experiences and Emotions; (2) Constant Vigilance: Assessing and Optimizing Family-Centered Care; and (3) Promoting a Competent, Thoughtful, and Caring Workforce. Findings indicate that pediatric oncology NMs draw on their own PC/EOL experiences and their nursing management knowledge to address the PC/EOL care learning needs of nursing staff and patient/family needs. NMs need additional resources to support nursing staff's PC/EOL communication training, including specific training in undergraduate and graduate nursing programs and national and hospital-based training programs.
Asunto(s)
Comunicación , Neoplasias/enfermería , Enfermeras Administradoras/psicología , Enfermería Oncológica , Cuidados Paliativos/psicología , Cuidado Terminal/psicología , Adulto , Femenino , Grupos Focales , Humanos , Persona de Mediana EdadRESUMEN
PURPOSE: Many healthcare providers (HCPs) struggle to communicate and connect with adolescents and young adults (AYA) with cancer that hinders their ability to adequately assess and address the psychosocial needs of AYA. The purpose of this article is to describe the key behaviors of HCPs AYA perceive as essential to fostering connectedness with them and the outcomes AYA experience from such connectedness. METHODS: The sample for this empirical phenomenological study was nine AYA cancer survivors (aged 20-23 years) who were diagnosed in adolescence. In-person individual interviews were conducted using a broad, data-generating question and analyzed using an adapted Colaizzi's method. RESULTS: The key behaviors of HCPs AYA perceive as essential to fostering connectedness include (1) exhibiting characteristics of knowing how to connect; (2) being watchful and attentive to AYA needs; (3) displaying a willingness to foster the relationship; (4) using humor; and (5) conveying respect, support, and caring. Outcomes of connectedness for AYA include a sense of being cared about, understood, and respected as unique individuals. In addition, AYA experience a sense of confidence/comfort in expressing themselves to HCPs, anticipation of interacting with HCPs in the future, a sense of gratitude for HCPs, and enhanced well-being. CONCLUSION: Findings highlight the specific behaviors HCPs can use to foster connectedness with AYA and the outcomes AYA experience from connectedness. Improving HCPs' ability to connect with AYA and maintain connectedness is essential to identifying and addressing the psychosocial needs of AYA. AYA-HCP connectedness may help reduce the psychosocial distress AYA experience during and after treatment.
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Actitud del Personal de Salud , Supervivientes de Cáncer/psicología , Personal de Salud/psicología , Neoplasias/psicología , Rol Profesional , Relaciones Profesional-Paciente , Adolescente , Adulto , Atención a la Salud , Femenino , Estudios de Seguimiento , Humanos , Masculino , Neoplasias/terapia , Pronóstico , Adulto JovenRESUMEN
Adolescents and young adults (AYAs) with cancer are a vulnerable and underserved population. AYAs' cancer survivorship is complicated by physical and psychosocial late effects which requires long-term follow-up. Connectedness with healthcare providers (HCPs) is a protective factor that may improve long-term follow-up behaviours of AYAs. However, little is known about AYAs' experiences connecting with HCPs. The purpose of this study was to describe AYA cancer survivors' experiences connecting with HCPs. This empirical phenomenological study interviewed nine AYA cancer survivors diagnosed during adolescence. Individual interviews were conducted and analysed using an adapted Colaizzi approach. The essential structure reveals that AYAs begin their experience of connectedness with a sense of disconnectedness prior to treatment. The diagnosis is a period of confusion and emotional turmoil that interfere with the AYAs' ability to connect. When AYAs come to accept their illness and gain familiarity with the environment, they then put forth an effort to connect with HCPs. Although it takes time for AYAs to reciprocate efforts to connect, HCPs should be aware that AYAs carefully assess and make judgments about whether or not HCPs can be trusted. Findings raise awareness of the actions and behaviours of HCPs that hinder connectedness, and targeted in future research.
Asunto(s)
Supervivientes de Cáncer/psicología , Personal de Salud/psicología , Relaciones Profesional-Paciente , Adolescente , Adulto , Femenino , Humanos , Masculino , Adulto JovenRESUMEN
OBJECTIVES: To summarize and evaluate the studies published since 2007 on psychosocial interventions designed for adolescents and young adults (AYA) with cancer. DATA SOURCES: PubMed, Ovid, and PsycINFO. CONCLUSION: Our review confirms that the development and evaluation of psychosocial interventions for AYA is still in its infancy. Only five studies were identified and these generally had small samples and limited results. IMPLICATIONS FOR NURSING PRACTICE: It is important for nurses to assess the needs of AYA. Incorporating creative ways for AYA to express their needs and self-reflect seems to be critically important and may help AYA cope positively with the cancer experience.
Asunto(s)
Neoplasias/psicología , Neoplasias/terapia , Psicología , Calidad de Vida/psicología , Adaptación Psicológica , Adolescente , Femenino , Humanos , Masculino , Neoplasias/enfermería , Enfermería Oncológica/organización & administración , Adulto JovenRESUMEN
PURPOSE/OBJECTIVES: To describe the notable advances in defining, conceptualizing, and measuring quality of life (QOL) in pediatric patients with cancer since the 1995 Oncology Nursing Society's State-of-the-Knowledge Conference on QOL. DATA SOURCES: Published research, clinical papers, and hospital policies. DATA SYNTHESIS: QOL ratings from children and adolescents are being solicited increasingly in research and clinical assessments during treatment and survivorship using various methods but are not solicited from terminally ill patients; qualitatively induced models of pediatric cancer-related QOL now are being tested using quantitative methods. CONCLUSIONS: Children aged five years and older are able to report their cancer-related QOL; reliable and valid QOL instruments exist for all phases of treatment except end of life. IMPLICATIONS FOR NURSING: Nurses can involve children and adolescents in rating their QOL for research and clinical purposes and can apply theory-based QOL models to direct care.
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Neoplasias/enfermería , Evaluación en Enfermería/métodos , Enfermería Oncológica/métodos , Enfermería Pediátrica/métodos , Calidad de Vida , Adaptación Psicológica , Adolescente , Niño , Preescolar , Sistemas de Computación , Relaciones Familiares , Humanos , Modelos Psicológicos , Neoplasias/psicología , Evaluación en Enfermería/tendencias , Enfermería Oncológica/instrumentación , Enfermería Oncológica/tendencias , Enfermería Pediátrica/tendencias , Investigación Cualitativa , Sobrevivientes , Terminología como AsuntoAsunto(s)
Relaciones Interprofesionales , Liderazgo , Mentores/psicología , Preceptoría/organización & administración , Actitud del Personal de Salud , Conocimientos, Actitudes y Práctica en Salud , Humanos , Internet , Motivación , Enfermeras Administradoras/educación , Enfermeras Administradoras/psicología , Evaluación de Programas y Proyectos de Salud , Apoyo Social , Desarrollo de Personal/organización & administración , Estados UnidosRESUMEN
Adolescents with cancer (AWC) have poorer treatment outcomes as well as higher incidence and mortality rates than do younger children, and they face additional challenges related to normal developmental issues of adolescence. Although research has shown that information on the cancer experience improves outcomes by decreasing uncertainty and increasing perceived support, little is known about the types of information AWC need and want. This study describes how AWC rate the importance of specific cancer-related information, analyzes gender and age group differences, and compares 2 different time-since-diagnosis groups of AWC. The sample consisted of adolescents with newly diagnosed cancer (n = 74) and those 1 to 3 years from diagnosis (n = 39). The Information Preferences of Adolescents (IPA) Scale was used to measure the adolescents' information needs. Both samples of AWC rated the need for information as high. There were no significant differences by age, but females had significantly higher total scores for both groups and for many item means in the newly diagnosed group. Qualitative analysis of the additional write-in items generated 4 themes: treatment/side effects, uncertainty, social issues, and personal/emotional issues.
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Necesidades y Demandas de Servicios de Salud , Neoplasias/enfermería , Educación del Paciente como Asunto , Adolescente , Adulto , Niño , Femenino , Humanos , Estudios Longitudinales , Masculino , Factores Sexuales , Estadísticas no Paramétricas , Estados UnidosRESUMEN
Adolescents and young adults with cancer (AYA) have strikingly poorer outcomes when compared to younger or older patients. Contributing reasons include low rates of enrollment in clinical trials and the "invisibility" of the AYA perspectives in research reports. We recommend a shift in research perspectives away from function-based studies that focus on morbidity and mortality outcomes to meaning-based models that will very likely rely upon qualitative methods and findings as the basis for developing psychosocial interventions that are sensitive to the AYA cancer experience. In addition, research on positive health concepts such as hope, spirituality, and positive coping are recommended as a way to learn about the effective strategies used by AYA to adjust to the cancer experience.