Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 447
Filtrar
1.
Eur Psychiatry ; 64(1): e5, 2020 12 21.
Artículo en Inglés | MEDLINE | ID: mdl-33342457

RESUMEN

BACKGROUND: Responses to anticipateddiscrimination are common among mental health service users and can have adetrimental impact on their recovery. Since 2009, the Time to Change (TTC)anti-stigma program in England has aimed to improve service users' empowerment,reducing public stigma and discrimination. In this paper, we aim to evaluatewhether service users' awareness of TTC is associated with fewer responses toanticipated discrimination. METHODS: We used data collected for the evaluation of TTC from samples of mental health service users interviewed by telephone in annual surveys 2009-2014. RESULTS: Five thousand and nine hundredand twenty-three participants completed the survey, mainly suffering from mooddisorders (depression, 28.4%, n = 1,681) and schizophrenia related disorders(15.4%, n = 915).In 23.2% of cases,participants were aware of any aspects of the TTC program, while participationin TTC was reported by 2.6%. Being aware of the TTC program was notsignificantly associated with responses to anticipated discrimination, exceptfor those participating in the TTC campaign in 2013. Stopping oneself fromapplying for work was significantly associated with experienced discriminationin both finding (p < 0.001) and keeping (p < 0.001) a job.Concealing mental health problems was associated with a general experience ofbeing shunned (p < 0.001). CONCLUSIONS: Awareness of a nationalanti-stigma program may not be sufficient to encourage people to seek work/educationor to be open about their illness in situations in which they currentlyanticipate discrimination. There is the need to identify new multi-levelstrategies for challenging anticipated discrimination, even focusing ondifferent target groups.


Asunto(s)
Trastornos Mentales/psicología , Servicios de Salud Mental/estadística & datos numéricos , Defensa del Paciente/psicología , Prejuicio/prevención & control , Prejuicio/psicología , Estigma Social , Adulto , Inglaterra , Femenino , Humanos , Masculino , Persona de Mediana Edad , Trastornos del Humor/psicología , Esquizofrenia , Encuestas y Cuestionarios
2.
Pediatrics ; 146(3)2020 09.
Artículo en Inglés | MEDLINE | ID: mdl-32820068

RESUMEN

BACKGROUND: When children are seriously ill, parents rely on communication with their clinicians. However, in previous research, researchers have not defined how this communication should function in pediatric oncology. We aimed to identify these communication functions from parental perspectives. METHODS: Semistructured interviews with 78 parents of children with cancer from 3 academic medical centers at 1 of 3 time points: treatment, survivorship, or bereavement. We analyzed interview transcripts using inductive and deductive coding. RESULTS: We identified 8 distinct functions of communication in pediatric oncology. Six of these functions are similar to previous findings from adult oncology: (1) building relationships, (2) exchanging information, (3) enabling family self-management, (4) making decisions, (5) managing uncertainty, and (6) responding to emotions. We also identified 2 functions not previously described in the adult literature: (7) providing validation and (8) supporting hope. Supporting hope manifested as emphasizing the positives, avoiding false hopes, demonstrating the intent to cure, and redirecting toward hope beyond survival. Validation manifested as reinforcing "good parenting" beliefs, empowering parents as partners and advocates, and validating concerns. Although all functions seemed to interact, building relationships appeared to provide a relational context in which all other interpersonal communication occurred. CONCLUSIONS: Parent interviews provided evidence for 8 distinct communication functions in pediatric oncology. Clinicians can use this framework to better understand and fulfill the communication needs of parents whose children have serious illness. Future work should be focused on measuring whether clinical teams are fulfilling these functions in various settings and developing interventions targeting these functions.


Asunto(s)
Comunicación , Oncología Médica , Neoplasias/terapia , Padres/psicología , Pediatría , Adulto , Aflicción , Supervivientes de Cáncer , Toma de Decisiones , Revelación , Emociones , Empatía , Empoderamiento , Familia , Femenino , Esperanza , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/psicología , Responsabilidad Parental/psicología , Defensa del Paciente/psicología , Relaciones Profesional-Familia , Investigación Cualitativa , Automanejo , Incertidumbre , Adulto Joven
3.
Int J Palliat Nurs ; 26(2): 75-82, 2020 Feb 02.
Artículo en Inglés | MEDLINE | ID: mdl-32125916

RESUMEN

At the end of life, hospice patients frequently rely on surrogate decision makers (SDMs) for healthcare decisions, which creates anxiety among SDMs. This project evaluated whether an educational intervention to create a plan of care for hospice patients would reduce anxiety among SDMs. Before the intervention, immediately after the intervention, and 2 weeks following the intervention SDM anxiety was measured with the Geriatric Anxiety Scale, State Trait Anxiety Inventory-State Anxiety Scale, and one question about decision-making anxiety. Twelve patients (80±14.7 years) and 18 SDMs (60±12.9 years) completed the intervention. Immediately after the intervention SDMs showed a significant decrease (P=0.003) in anxiety. When anxiety was measured 2 weeks post-intervention, anxiety had increased again, and was no longer significantly different from pre-intervention levels. This project demonstrated that an educational intervention in the hospice setting can be effective in creating a short-term decrease to SDM anxiety levels.


Asunto(s)
Planificación Anticipada de Atención , Trastornos de Ansiedad/prevención & control , Terapia Conductista/educación , Toma de Decisiones , Defensa del Paciente/educación , Defensa del Paciente/psicología , Cuidado Terminal/psicología , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad , Estados Unidos
6.
Am J Hosp Palliat Care ; 37(3): 214-221, 2020 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-31526015

RESUMEN

BACKGROUND: Clinicians need to deliver prognostic information to surrogates of nondecisional, critically ill patients so that surrogates can make informed medical decisions that reflect the patient's values. Our objective was to implement a new approach for communicating with surrogates of patients with chronic critical illness. METHODS: Surrogate decision makers of patients who were difficult to liberate from mechanical ventilation were prospectively enrolled. Surrogates met with different members of the intensive care unit treatment team for sequential 15-minute appointments to receive patient-specific assessments and education on chronic critical illness. The feasibility and acceptability of this approach were determined. A 24-question comprehension instrument was developed to assess a participant's understanding that a family member was displaying features of chronic critical illness. Each question was scored from 1 to 5, with larger scores indicating greater comprehension. RESULTS: Over a 15-week period, educational sessions for 9 mechanically ventilated patients were conducted. On average, 2 surrogates per patient (range: 1-4) and 6 members of the interdisciplinary team (range: 4-6) were at each meeting. Surrogates and clinicians had very positive impressions of the communication intervention. The average preintervention comprehension score was 85 of 120 (standard deviation [SD]: 8, range: 71-101). The postintervention comprehension score was greater by 5 points on average (SD: 9, range: -11 to +20 points, P = .04). CONCLUSIONS: Surrogates of critically ill patients approved of this novel communication approach and had a greater understanding of the patient's medical condition after the intervention.


Asunto(s)
Enfermedad Crónica/terapia , Comunicación , Enfermedad Crítica/terapia , Familia/psicología , Defensa del Paciente/psicología , Grupo de Atención al Paciente , Médicos/psicología , Adulto , Anciano , Anciano de 80 o más Años , Chicago , Toma de Decisiones , Femenino , Humanos , Masculino , Persona de Mediana Edad , Relaciones Profesional-Familia
7.
Nurs Ethics ; 27(2): 333-347, 2020 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-31113269

RESUMEN

BACKGROUND: The decision whether to initiate cardiopulmonary resuscitation may sometimes be ethically complex. While studies have addressed some of these issues, along with the role of nurses in cardiopulmonary resuscitation, most have not considered the importance of nurses acting as advocates for their patients with respect to cardiopulmonary resuscitation. RESEARCH OBJECTIVE: To explore what the nurse's advocacy role is in cardiopulmonary resuscitation from the perspective of patients, relatives, and health professionals in the Basque Country (Spain). RESEARCH DESIGN: An exploratory critical qualitative study was conducted from October 2015 to March 2016. Thematic analysis was used to analyse the data. PARTICIPANTS: Four discussion groups were held: one with patients and relatives (n = 8), two with nurses (n = 7 and n = 6, respectively), and one with physicians (n = 5). ETHICAL CONSIDERATIONS: Approval was obtained from the Basque Country Clinical Research Ethics Committee. FINDINGS: Three significant themes were identified: (a) accompanying patients during end of life in a context of medical dominance, (b) maintaining the pact of silence, and (c) yielding to legal uncertainty and concerns. DISCUSSION: The values and beliefs of the actors involved, as well as pre-established social and institutional rules reduced nurses' advocacy to that of intermediaries between the physician and the family within the hospital environment. On the contrary, in primary health care, nurses participated more actively within the interdisciplinary team. CONCLUSION: This study provides key information for the improvement and empowerment for ethical nursing practice in a cardiac arrest, and provides the perspective of patients and relatives, nurses and physicians.


Asunto(s)
Reanimación Cardiopulmonar/enfermería , Rol de la Enfermera , Defensa del Paciente/psicología , Adulto , Actitud del Personal de Salud , Ética en Enfermería , Femenino , Humanos , Entrevistas como Asunto/métodos , Masculino , Defensa del Paciente/normas , Investigación Cualitativa , España
8.
Rev. bras. enferm ; 72(6): 1639-1645, Nov.-Dec. 2019. tab
Artículo en Inglés | LILACS, BDENF - Enfermería | ID: biblio-1042166

RESUMEN

ABSTRACT Objective: to understand how nurses deal with the elderly's autonomy at the end of life. Method: qualitative, exploratory study, guided by the Grounded Theory. Ten nurses, eight doctors and 15 nursing technicians were interviewed between November 2016 and May 2017 at a university hospital in Rio de Janeiro/Brazil. Results: nurses deal with the elderly's autonomy in compliance with the code of ethics and exercise leadership in actions and interactions to defend this right, evaluating, guiding and listening to the preferences of the elderly; interacting with the family; and sharing information with the health team. Final considerations: the elderly's autonomy must be ensured in care planning, based on patient-centered communication and developed in the interaction among agents involved in care. The discussion on "Living Wills" Health Care Directives and principles of palliative care must be encouraged.


RESUMEN Objetivo: comprender la forma en que los enfermeros se ocupan de la autonomía del anciano en relación con el fin de la vida. Método: estudio cualitativo, exploratorio, guiado por la Teoría Fundamentada en los Datos. Diez enfermeros, ocho médicos y 15 técnicos de enfermería fueron entrevistados entre noviembre de 2016 y mayo de 2017, en un hospital universitario, en Río de Janeiro/Brasil. Resultados: los enfermeros lidian con la autonomía del anciano en atención al código de ética y ejercen el liderazgo en las acciones e interacciones para defender este derecho, evaluando, orientando y escuchando las preferencias de los ancianos; interactuando con la familia; y compartiendo información con el equipo de salud. Consideraciones finales: la autonomía de los ancianos debe ser asegurada en la planificación asistencial, teniendo como base la comunicación centrada en el paciente y desarrollada en el proceso interacional entre los agentes involucrados en el cuidado. Es necesario fomentar la discusión sobre las Diretivas Antecipadas de Vontades (Directivas Anticipadas de Voluntades) y sobre los principios de los cuidados paliativos.


RESUMO Objetivo: compreender a forma como os enfermeiros lidam com a autonomia do idoso na terminalidade da vida. Método: estudo qualitativo, exploratório, guiado pela Teoria Fundamentada nos Dados. Dez enfermeiros, oito médicos e 15 técnicos de enfermagem foram entrevistados entre novembro de 2016 e maio de 2017, em um hospital universitário, no Rio de Janeiro/Brasil. Resultados: os enfermeiros lidam com a autonomia do idoso em atendimento ao código de ética e exercem a liderança nas ações e interações para defender este direito, avaliando, orientando e ouvindo as preferências dos idosos; interatuando com a família; e compartilhando informações com a equipe de saúde. Considerações finais: a autonomia dos idosos deve ser assegurada no planejamento assistencial, tendo como base a comunicação centrada no paciente e desenvolvida no processo interacional entre os agentes envolvidos no cuidado. É preciso fomentar a discussão sobre as Diretivas Antecipadas de Vontades e sobre os princípios dos cuidados paliativos.


Asunto(s)
Humanos , Masculino , Femenino , Adulto , Defensa del Paciente/psicología , Cuidado Terminal/psicología , Autonomía Personal , Enfermeras y Enfermeros/normas , Cuidado Terminal/normas , Brasil , Investigación Cualitativa , Teoría Fundamentada , Geriatría/métodos , Geriatría/normas , Persona de Mediana Edad , Enfermeras y Enfermeros/psicología , Enfermeras y Enfermeros/estadística & datos numéricos
9.
Violence Against Women ; 25(16): 2024-2046, 2019 12.
Artículo en Inglés | MEDLINE | ID: mdl-31718530

RESUMEN

This article is a conversation between two academic experts, Callie Rennison and Nikki Jones, who endeavor to sum up what has been accomplished in eliminating violence against women in the United States during the 25 years of the journal's existence. Domestic violence, rape, and sexual harassment are discussed. Although prevalence rates are down in domestic violence, rape and sexual harassment remain persistent problems. Looking at violence against women from an analysis of President Trump voters in the 2016 U.S. presidential election, Rennison and Jones observe the extent to which the current ideas and attitudes of women-both young and old-will need to change before violence can be eliminated. Rather than viewing events in the United States as totally negative, they see them as presenting new opportunities for greater understanding of violence against women and for new methods of prevention and perpetrator accountability.


Asunto(s)
Becas/métodos , Violencia de Género/tendencias , Defensa del Paciente/psicología , Investigación/tendencias , Violencia de Género/prevención & control , Violencia de Género/psicología , Humanos , Defensa del Paciente/tendencias
10.
AMA J Ethics ; 21(10): E902-903, 2019 10 01.
Artículo en Inglés | MEDLINE | ID: mdl-31651389

RESUMEN

Many health professions students struggle with deciding whether and when to challenge their teachers. This graphic memoir, When Good Women Do Nothing, conveys what happened one day in the life of a paramedic student called to help an incarcerated, handcuffed woman in labor who gave birth on a stretcher. The memoir documents numerous clinical and ethical disagreements and decision points throughout the paramedic team's time with this patient.


Asunto(s)
Toma de Decisiones , Mujeres/psicología , Técnicos Medios en Salud/ética , Parto Obstétrico/ética , Femenino , Novelas Gráficas como Asunto , Humanos , Recién Nacido , Defensa del Paciente/ética , Defensa del Paciente/psicología , Embarazo , Prisioneros
11.
Rev Bras Enferm ; 72(6): 1639-1645, 2019.
Artículo en Inglés, Portugués | MEDLINE | ID: mdl-31644755

RESUMEN

OBJECTIVE: to understand how nurses deal with the elderly's autonomy at the end of life. METHOD: qualitative, exploratory study, guided by the Grounded Theory. Ten nurses, eight doctors and 15 nursing technicians were interviewed between November 2016 and May 2017 at a university hospital in Rio de Janeiro/Brazil. RESULTS: nurses deal with the elderly's autonomy in compliance with the code of ethics and exercise leadership in actions and interactions to defend this right, evaluating, guiding and listening to the preferences of the elderly; interacting with the family; and sharing information with the health team. FINAL CONSIDERATIONS: the elderly's autonomy must be ensured in care planning, based on patient-centered communication and developed in the interaction among agents involved in care. The discussion on "Living Wills" Health Care Directives and principles of palliative care must be encouraged.


Asunto(s)
Enfermeras y Enfermeros/normas , Defensa del Paciente/psicología , Autonomía Personal , Cuidado Terminal/psicología , Adulto , Brasil , Femenino , Geriatría/métodos , Geriatría/normas , Teoría Fundamentada , Humanos , Masculino , Persona de Mediana Edad , Enfermeras y Enfermeros/psicología , Enfermeras y Enfermeros/estadística & datos numéricos , Investigación Cualitativa , Cuidado Terminal/normas
13.
Rev Esc Enferm USP ; 53: e03490, 2019 Aug 05.
Artículo en Portugués, Inglés | MEDLINE | ID: mdl-31389487

RESUMEN

OBJECTIVE: To explore the actions and factors associated to patient advocacy by intensivist nurses using the Protective Nursing Advocacy Scale. METHOD: A quantitative, descriptive-exploratory, cross-sectional study. The questionnaire was answered by nurses who worked in Intensive Care Units in the South and Southeast regions of Brazil. A factorial exploratory analysis of the data, T-tests and the chi-square test were used for association between factors. RESULTS: 451 nurses participated in the study. A greater number of nurses disagreed with the negative consequences that patient advocacy may have or bring to them. Greater dialogue among nursing staff would enhance teamwork results. Nurses with two or more job relationships need more physical and mental effort, which compromises their quality of life and work, leading to them being those who least practice patient advocacy. CONCLUSION: Nurses understand patient advocacy as an important part of their work, as well as factors which may influence their decision to defend their patients, but are still unaware of the benefits of advocacy.


Asunto(s)
Unidades de Cuidados Intensivos , Personal de Enfermería en Hospital/estadística & datos numéricos , Defensa del Paciente/psicología , Adulto , Actitud del Personal de Salud , Brasil , Estudios Transversales , Femenino , Humanos , Masculino , Rol de la Enfermera , Personal de Enfermería en Hospital/organización & administración , Calidad de Vida , Encuestas y Cuestionarios
14.
J Appl Res Intellect Disabil ; 32(6): 1349-1358, 2019 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-31210394

RESUMEN

BACKGROUND: There is no one agreed definition of self-advocacy, but it can be taken to include actions and concepts such as standing up for one's rights and self-determination. METHOD: A review of studies examining the psychological and social impact of self-advocacy group membership on people with intellectual disabilities was conducted. Systematic searches of electronic databases (PsycINFO, Scopus, Web of Science and ProQuest's Sociology Database), and manual searches of reference lists and citations, identified 12 studies. RESULTS: "Empowerment" and "increased confidence" were frequently reported outcomes. "Belonging," increased opportunities for social connections and changed self-identity were also key themes. CONCLUSIONS: Limitations of the review included difficulty categorizing outcomes, and limitations of the evidence base included a lack of quantitative studies. Implications of the review include an observation that the role of self-advocates in the research literature could be extended to the co-construction of research agendas.


Asunto(s)
Empoderamiento , Discapacidad Intelectual/psicología , Defensa del Paciente/psicología , Participación del Paciente/psicología , Participación Social/psicología , Humanos , Autoimagen
15.
Creat Nurs ; 25(2): 82-86, 2019 May 01.
Artículo en Inglés | MEDLINE | ID: mdl-31085660

RESUMEN

Nurses across the nation are stepping forward as leaders in response to the rapid and continuous change in health care and the acute needs of vulnerable populations. Caring for vulnerable populations is inherent in the nurse's role. However, caring for those in vulnerable states goes beyond the bedside. Nurses are in a unique position to bring their experiences and knowledge in patient care, quality, safety, cost containment, and wellness, as members of boards, elected officials, and nonprofit directors. Their impact is significant, as they balance critical thinking skills, financial knowledge, and compassion in order to influence executive decision-making. This article describes the importance of nurses serving on boards from evidence-based as well as personal perspectives, and presents specific examples of nurses' impact on vulnerable populations and those on the brink of vulnerability, in schools, communities, health-care institutions, and beyond. Will you also rise to the call to serve?


Asunto(s)
Empatía , Consejo Directivo , Rol de la Enfermera/psicología , Atención de Enfermería/psicología , Personal de Enfermería en Hospital/psicología , Defensa del Paciente/psicología , Poblaciones Vulnerables/psicología , Adulto , Actitud del Personal de Salud , Femenino , Conocimientos, Actitudes y Práctica en Salud , Humanos , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Estados Unidos
16.
J Nurs Manag ; 27(6): 1176-1181, 2019 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-31077621

RESUMEN

AIM: To identify workplace factors that influence patient advocacy among registered nurses (RNs) and their willingness to report unsafe practices. BACKGROUND: A prior study by Black illustrated that 34% of respondents were aware of conditions that may have caused patient harm but had not reported the issue. The most common reasons identified for failing to report issues were fear of retaliation and a belief that nothing would prevail from the reports. METHOD: Using Black's study as a model, reporting data were collected from a sample of RNs actively practicing in acute care hospitals. RESULTS: While reasons for reporting are consistent with Black's study, data suggest that a nurse's experiences and working environment are prime factors in their willingness to report patient care issues. CONCLUSION: Although RNs may not have personally experienced workplace retaliation, fear of retaliation when reporting unsafe patient care practices still exists. Nursing leadership's ability to facilitate a culture of safety by proactively addressing unsafe practices fosters a level of comfort for patient advocacy and willingness to report issues. Education, professional associations and existing protection laws are available resources which contribute to organizational support systems. IMPLICATIONS FOR NURSING MANAGEMENT: The findings of this study are consistent with the literature in that organizations need to create a supportive workplace environment whereby, through collective input and leadership, reporting protocols are in place that empower RNs to report unsafe conditions. Direct care nurses are positioned, especially well to identify and speak up regarding conditions that may result in near misses or actual adverse events. Therefore, it is the responsibility, and duty, of nursing management to create and facilitate reporting systems that will be utilized without fear of retaliation and that will contribute to a culture of safety and patient advocacy.


Asunto(s)
Actitud del Personal de Salud , Gestión de Riesgos/normas , Lugar de Trabajo/psicología , Adulto , Coraje , Femenino , Humanos , Masculino , Persona de Mediana Edad , Salud Laboral , Cultura Organizacional , Defensa del Paciente/psicología , Defensa del Paciente/normas , Encuestas y Cuestionarios , Lugar de Trabajo/normas
17.
BMC Med ; 17(1): 71, 2019 04 01.
Artículo en Inglés | MEDLINE | ID: mdl-30929642

RESUMEN

BACKGROUND: Peer support can enable patient engagement with healthcare services, particularly for marginalised populations. In this randomised controlled trial, the efficacy of a peer support intervention at promoting successful engagement with clinical services for chronic hepatitis C was assessed. METHODS: In London, UK, potential participants were approached through outreach services for problematic drug use and homelessness. Individuals positive for hepatitis C virus (HCV) after confirmatory testing were randomised using an online service to the intervention (peer support) or standard of care. The primary outcome of interest was successful engagement with clinical hepatitis services. The study was non-blinded. Absolute differences were calculated using a generalised linear model and the results compared to logistic regression. RESULTS: Three hundred sixty-four individuals consented to participate. One hundred one had chronic hepatitis C and were randomised, 63 to receive the intervention (peer support). A successful outcome was achieved by 23 individuals in this arm (36.5%) and seven (18.4%) receiving the standard of care, giving an absolute increase of 18.1% (95% confidence interval 1.0-35.2%, p value = 0.04). This was mirrored in the logistic regression (odds ratio 2.55 (0.97-6.70), p = 0.06). No serious adverse events were reported. CONCLUSIONS: Peer support can improve the engagement of patients with chronic HCV with healthcare services. TRIAL REGISTRATION: ISRCTN24707359 . Registered 19th October 2012.


Asunto(s)
Hepatitis C/terapia , Aceptación de la Atención de Salud , Defensa del Paciente , Participación del Paciente/métodos , Grupo Paritario , Sistemas de Apoyo Psicosocial , Adulto , Consejo , Femenino , Hepatitis C/epidemiología , Hepatitis C/psicología , Personas sin Hogar/psicología , Personas sin Hogar/estadística & datos numéricos , Humanos , Londres/epidemiología , Masculino , Persona de Mediana Edad , Aceptación de la Atención de Salud/estadística & datos numéricos , Defensa del Paciente/psicología , Defensa del Paciente/normas , Participación del Paciente/estadística & datos numéricos , Grupos de Autoayuda/organización & administración , Grupos de Autoayuda/normas , Nivel de Atención/estadística & datos numéricos , Trastornos Relacionados con Sustancias/epidemiología , Trastornos Relacionados con Sustancias/terapia
19.
Child Care Health Dev ; 45(3): 313-332, 2019 05.
Artículo en Inglés | MEDLINE | ID: mdl-30817012

RESUMEN

BACKGROUND: There are a growing number of children and young people (CYP) with chronic health needs or complex disabilities. Increasingly, CYP with life-limiting or life-threatening conditions are surviving into adulthood. Communication between CYP, their family, and health professionals can be challenging. The use of a personal health record (PHR) is one potential strategy for improving communication by promoting CYP's health advocacy skills. However, PHR implementation has proved difficult due to technical, organisational, and professional barriers. The aim of this realist review is to identify the factors, which help or hinder the use of PHRs with CYP living with a complex health condition. METHODS: Systematic realist review. Literature was sourced from six databases: Medline, Embase, CINAHL, PsychInfo, The Cochrane Library, and Science Direct (from 1946 to August Week 3 2018). The web was searched to identify grey literature. Articles were sourced from reference lists of included studies. Data were extracted using a standardised data extraction form. Two reviewers completed data extraction and synthesis. Methodological rigor was assessed using the relevant Critical Appraisal Skills Programme tool. RESULTS: Nine articles were included. Contextual factors, which helped implementation, included the CYP having a high perception of need for a PHR and a high level of desire for self-management. Service providers and CYP need knowledge about the purpose and benefits of the PHR, and organisations need a dedicated person to facilitate PHR use. Mechanisms triggered by the PHR included improved understanding and knowledge of health care condition(s) for CYP, an increased feeling of control over condition(s), and more active engagement in their health care. Outcomes for CYP included improved self-advocacy and communication. CONCLUSION: Clearer definitions of which young people would benefit from using a PHR must be established to inform which organisations and service providers would be best suited to PHR implementation.


Asunto(s)
Registros de Salud Personal/psicología , Aceptación de la Atención de Salud , Adolescente , Niño , Enfermedad Crónica/psicología , Enfermedad Crónica/terapia , Comunicación , Conocimientos, Actitudes y Práctica en Salud , Investigación sobre Servicios de Salud/métodos , Humanos , Defensa del Paciente/psicología , Relaciones Profesional-Paciente , Autocuidado , Adulto Joven
20.
Games Health J ; 8(1): 55-63, 2019 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-30763132

RESUMEN

OBJECTIVE: Serious games are a growing form of psychoeducation, although few studies have evaluated serious games for patients with advanced cancer. The purpose of this study was to develop and assess the initial acceptability of a serious game to teach women with advanced cancer self-advocacy skills, including communication, decision-making, and social connectivity, to improve their quality of life with cancer. MATERIALS AND METHODS: We conducted a multistage, user-centered codesign process to develop the content of the game that was consistent with our work on how patients self-advocate and patients' preferences for the game. First, we conducted an open pilot study of a mock paper version of the game by assessing patients' interest in the serious game. Second, we organized a diverse expert panel to develop the serious game with a company, Simcoach Games, using patient-centered design approaches with multiple rounds of patient feedback. Finally, we performed acceptability testing of the game by asking patients their perceptions of the game's appropriateness, realism, and entertainment. RESULTS: During the three stages of game development, patients reported that the serious game was appropriate, informative, useful, and relevant to their challenges as patients with cancer. Suggestions for improvement included tailoring the game to a patient's specific situation, providing the game early in treatment, and including caregivers and other patients in the game play. CONCLUSION: The Strong Together™ serious game demonstrates the potential to assist patients in advocating for their needs and priorities. Future work will use patient suggestions to improve the game before efficacy testing.


Asunto(s)
Neoplasias/psicología , Defensa del Paciente/educación , Educación del Paciente como Asunto/métodos , Juegos de Video , Adulto , Femenino , Humanos , Defensa del Paciente/psicología , Materiales de Enseñanza , Juegos de Video/psicología
SELECCIÓN DE REFERENCIAS
DETALLE DE LA BÚSQUEDA
...