Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 118
Filtrar
Más filtros

Bases de datos
Tipo del documento
Intervalo de año de publicación
1.
Healthc Manage Forum ; 37(3): 141-150, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38469859

RESUMEN

Billions of dollars are invested annually in leadership development globally; however, few programs are evidence-based, risking adverse outcomes, and wasted time and money. This article describes the novel Inspire Nursing Leadership Program (INLP) and the outcomes-based process of incorporating gold standard evidence into its design, delivery, and evaluation. The INLP design was informed by a needs analysis, research evidence, and by nursing, Indigenous, and equity, diversity, and inclusion experts. The program's goals include enabling participants to develop leadership capabilities, cultivate strategic community partnerships, lead innovation projects, and connect with colleagues. Design features include an outcomes-based approach, the LEADS framework, and alignment with the principles of adult learning. Components include leadership impact projects, 360-assessments, blended interactive sessions, coaching, mentoring, and application and reflection exercises. The evaluation framework and subsequent proposed research design align to top-quality standards. Healthcare leadership programs must be evidence-based to support leaders in improving and transforming health systems.


Asunto(s)
Liderazgo , Tutoría , Adulto , Humanos , Mentores , Atención a la Salud , Aprendizaje
2.
Can Fam Physician ; 69(11): 784-791, 2023 11.
Artículo en Inglés | MEDLINE | ID: mdl-37963798

RESUMEN

OBJECTIVE: To investigate changes in FPs' self-reported clinical practices after participation in a comprehensive 1-year cognitive behavioural therapy (CBT) training course. DESIGN: Cross-sectional study. SETTING: Norway. PARTICIPANTS: Family physicians. MAIN OUTCOME MEASURES: Impact of the CBT training course on FPs' delivery of CBT to patients and their use of referral to specialized mental health care providers. RESULTS: Of the 217 FPs who had participated in the training course between 2009 and 2016, 124 completed the survey (response rate=57.1%); 99.2% of participating FPs reported using CBT tools daily in patient consultations, more than three-quarters reported changing the way they organized their workdays to accommodate CBT, and 75.0% reported using structured CBT consultations at least monthly after completing the course. The most common patient groups receiving structured CBT were those experiencing mild or moderate depression (22.8%), anxiety disorders (30.4%), or a combination of an anxiety disorder and depression (43.5%). The odds of making fewer referrals to specialized mental health care providers were 5.4 times higher among FPs who used Socratic questioning (P=.02), 4.7 times higher among those who provided consultation summaries (P=.01), and 3.3 times higher among those who had participated in a refresher course (P=.05). CONCLUSION: Comprehensive training in CBT promotes the use of CBT tools and strategies in family practice. Further longitudinal research (ideally randomized controlled studies) on patient outcomes related to CBT provided in family practices is required.


Asunto(s)
Terapia Cognitivo-Conductual , Trastorno Depresivo Mayor , Humanos , Estudios Transversales , Médicos de Familia , Noruega
3.
BMC Health Serv Res ; 22(1): 1527, 2022 Dec 14.
Artículo en Inglés | MEDLINE | ID: mdl-36517848

RESUMEN

BACKGROUND: Huntington's disease (HD) is a progressive genetic neurodegenerative disease accompanied by mental and neurocognitive disabilities, which requires long-term and comprehensive treatment and care. Information on the health and economic burden of HD is scarce, but essential for conducting health economic analyses, in light of the prospect of new therapies for HD. In this study, we aim to identify values for Health-Related Quality of Life (HRQoL), describe service utilization and costs, and their associations with clinical and socio-demographic variables across all phases of HD. METHODS: A cross-sectional study including 86 patients across all phases of HD. Values of HRQoL were calculated based on EQ-5D-3L index scores. Additionally, health care and societal costs were estimated based on service utilization collected using the Client Service Receipt Inventory (CSRI) and data from the patients' interviews. Total societal costs included costs of primary and secondary health care services, informal care and productivity loss of the patients. Multiple regression analyses were used to investigate associations between socio-demographic and clinical variables on HRQoL and costs. RESULTS: HRQoL values declined, while total costs increased across disease severity. Total six-month healthcare costs and total societal costs were € 18,538 and € 66,789 respectively. Healthcare and societal costs doubled from early to middle phase, and tripled from middle to advanced disease phase. Main six-month cost components for the three disease phases were informal care costs (€ 30,605) accounting for approximately half the total societal costs, and costs due to production loss (€ 18,907) being slightly higher than the total healthcare costs. Disease severity and gender were found to have the strongest effect on both values of HRQoL and costs. CONCLUSIONS: Reported values of HRQoL and costs including costs for production loss may be used in modelling the cost-effectiveness of treatment for HD. Our results highlight the crucial role the informal caregivers play in the care provided to HD patients in all disease phases. Future research should focus on the estimation of productivity loss among informal caregivers.


Asunto(s)
Enfermedad de Huntington , Enfermedades Neurodegenerativas , Humanos , Calidad de Vida , Costo de Enfermedad , Estudios Transversales , Encuestas y Cuestionarios , Enfermedad de Huntington/terapia , Costos de la Atención en Salud , Noruega/epidemiología
4.
Tidsskr Nor Laegeforen ; 142(2)2022 02 01.
Artículo en Inglés, Noruego | MEDLINE | ID: mdl-35107948

RESUMEN

BACKGROUND: All Norwegian municipalities have a statutory duty to employ a District Medical Officer as their medical advisor, but they are free to decide where this role should be placed in the municipal hierarchy. The position's contracted working hours, seniority and job content vary between municipalities. We conducted a survey to increase our understanding of how District Medical Officers see their own role. MATERIAL AND METHOD: Data were collected by conducting focus group interviews with fifteen District Medical Officers from various municipalities and counties. The data were subjected to thematic qualitative analysis involving systematic text condensation. RESULTS: All the District Medical Officers had advisory roles and many reported limited access to formal decision-making arenas. They typically saw their role as poorly defined and felt a sense of invisibility, but this perception was combined with considerable autonomy. Most of the District Medical Officers reported that they felt caught between demands for advice at two different levels: clinical advice relating to individual cases and general public health advice to local authorities. This sense of being squeezed was more pronounced among District Medical Officers in large municipalities than in small municipalities. Organisational contexts and managerial expectations played a part in creating greater demand for clinical advice. This curbed the development of a public health identity and role. INTERPRETATION: District Medical Officers have a hybrid role as multi-level advisors, and this requires them to adopt several identities. In order to bolster the public health aspect, their role must be made clearer by introducing appropriate expectations and organisational contexts within the municipality.


Asunto(s)
Personal de Salud , Salud Pública , Humanos , Percepción , Encuestas y Cuestionarios
5.
BMC Neurol ; 21(1): 101, 2021 Mar 04.
Artículo en Inglés | MEDLINE | ID: mdl-33663406

RESUMEN

BACKGROUND: Pain is prevalent in myotonic dystrophy 1 (DM1). This study investigated whether CTG repeat size, disease duration, BMI and motor and psychological function were related to pain in adult patients with DM1, and if there were gender differences regarding intensity and location of pain. METHOD: Cross-sectional design. Pain was investigated in 50 genetically confirmed DM1 patients by combining clinical assessment and self-reports of pain intensity and locations. Pain scoring results were related to CTG size, disease duration, muscle strength, walking capacity measured by 6-min walk test, activity of daily life by Katz ADL Index, respiratory function by Forced Vital Capacity and BMI. In addition, the degree of reported pain was related to Quality of life measured by WHOQOL-BREF; fatigue was measured by Fatigue severity scale; psychological functions were measured by Beck Depression Inventory, Beck Anxiety Inventory, IQ and Autism spectrum Quotient. RESULTS: Pain was reported in 84% of the patients and was significantly correlated with CTG size (r = 0.28 p = 0.050), disease duration (r = 0.38 p = 0.007), quality of life (r = - 0.37 p = 0.009), fatigue (r = 0.33 p = 0.02) and forced vital capacity (r = - 0.51, p = 0.005). Significant gender differences, with higher scores for females, were documented. In male subjects the number of pain locations was significantly correlated with quality of life and the autism quotient. In females, pain intensity was significantly correlated with activity, respiratory function and BMI. CONCLUSIONS: Pain in DM1 was prevalent, with a strong association to lung function and other aspects of the disease. Significant gender differences were present for pain intensity and number of pain locations. How pain was related to other symptoms differed between male and female subjects. Our findings highlight the importance of assessments of pain in DM1 patients.


Asunto(s)
Distrofia Miotónica/complicaciones , Dolor/epidemiología , Dolor/genética , Adulto , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Distrofia Miotónica/genética , Prevalencia , Calidad de Vida , Caracteres Sexuales , Expansión de Repetición de Trinucleótido/genética
6.
J Headache Pain ; 22(1): 136, 2021 Nov 11.
Artículo en Inglés | MEDLINE | ID: mdl-34763647

RESUMEN

BACKGROUND: General practitioners (GPs) diagnose and manage a majority of headache patients seeking health care. With the aim to understand the potential for clinical improvement and educational needs, we performed a study to investigate Norwegian GPs knowledge about headache and its clinical management. METHODS: We invited GPs from a random sample of 130 Norwegian continuous medical education (CME) groups to respond to an anonymous questionnaire survey. RESULTS: 367 GPs responded to the survey (73% of invited CME groups, 7.6% of all GPs in Norway). Mean age was 46 (SD 11) years, with an average of 18 (SD 10) years of clinical experience. In general the national treatment recommendations were followed, while the International Classification of Headache Disorders and other international guidelines were rarely used. Overall, 80% (n = 292) of the GPs suggested adequate prophylactic medication for frequent episodic migraine, while 28% (n = 101) suggested adequate prophylactic medication for chronic tension-type headache (CTTH). Half (52%, n = 191)) of the respondents were aware that different types of acute headache medication can lead to medication-overuse headache (MOH), and 59% (n = 217) knew that prophylactic headache medication does not lead to MOH. GPs often used MRI in the diagnostic work-up. GPs reported that lack of good treatment options was a main barrier to more optimized treatment of headache patients. CONCLUSION: The knowledge of management of CTTH and MOH was moderate compared to migraine among Norwegian GPs.


Asunto(s)
Médicos Generales , Cefaleas Secundarias , Trastornos de Cefalalgia , Trastornos de Cefalalgia/diagnóstico , Trastornos de Cefalalgia/terapia , Humanos , Persona de Mediana Edad , Noruega/epidemiología , Encuestas y Cuestionarios
7.
BMC Health Serv Res ; 20(1): 400, 2020 May 11.
Artículo en Inglés | MEDLINE | ID: mdl-32393343

RESUMEN

BACKGROUND: Physician turnover is a concern in many health care systems globally. A better understanding of physicians' reasons for leaving their job may inform organisational policies to retain key personnel. The aim of this study was to investigate hospital physicians' intention to leave their current job, and to investigate if such intentions are associated with how physicians assess their leaders and the organisational context. METHODS: Data was derived from a survey of 971 physicians working in public hospitals in Norway in 2016. The data was analysed using descriptive statistics and multivariate analysis. RESULTS: We found that 21.0% of all hospital physicians expressed an intention to leave their current job for another job. An additional 20.3% of physicians had not made up their mind whether to stay or leave. Physicians' perceptions of their leaders and the organisational context influence their intention to leave their hospital. Respondents who perceived their leaders as professional-supportive had a significantly lower probability of reporting an intention to leave their job. The analysis suggests that organisational context, such as department mergers, weigh in on physicians' considerations about leaving their current job. Social climate and commitment are important reasons why physician stay. CONCLUSIONS: A professional-supportive leadership style may have a positive influence on retention of physicians in public hospitals. Further research should investigate how retention of physicians is associated with performance related to organisational and leadership style.


Asunto(s)
Hospitales Públicos/organización & administración , Reorganización del Personal/estadística & datos numéricos , Médicos/psicología , Adulto , Femenino , Humanos , Intención , Satisfacción en el Trabajo , Liderazgo , Masculino , Persona de Mediana Edad , Noruega , Encuestas y Cuestionarios
8.
BMC Health Serv Res ; 20(1): 627, 2020 Jul 08.
Artículo en Inglés | MEDLINE | ID: mdl-32641038

RESUMEN

BACKGROUND: There is a gap in the literature regarding what takes place between the announcement of a regulatory intervention, such as an external inspection of a health care organisation, and the inspecting body's site visit. This study aimed to explore inspecting bodies' expectations of how inspected organisations should prepare before an external inspection and to elucidate how inspected health care organisations prepare before site visits. METHODS: This qualitative study was based on data from 17 group interviews with a total of 75 participants representing inspection teams, organisation leaders and clinicians in inspected health care organisations. The data were analysed using a qualitative content analysis method. RESULTS: We identified two approaches to how the inspection teams expected that the inspected organisations should prepare before site visits. In the first approach the inspection teams did not expect any improvement activities to be initiated during this period and focused on identifying inadequacies that the inspected organisations should subsequently improve. In the second approach the inspection teams expected organisations to review their own practices and begin improvement activities if necessary. The inspected organisations responded in different ways to an upcoming site visit, and the organisations' leaders were important in determining which activities would be initiated. Organisations in which leaders involved clinicians in assessing care delivery tended to initiate action to improve and expected inspection teams to assess their ongoing improvement work and provide guidance on further improvements. Leaders who did not involve clinicians in assessing the quality of care tended to perceive the current quality of care as adequate on the basis of reviewing written guidelines. They did not initiate action to improve care delivery apart from updating written guidelines describing how care should be delivered, and they expected the inspection team to confirm that their current practices were in line with the guidelines and external standards. CONCLUSIONS: To promote anticipatory effects in inspected organisations, inspecting bodies should stress the importance of assessing clinical practice and involving frontline clinical staff and leaders in the assessment and in improvement work before the site visit.


Asunto(s)
Atención a la Salud/organización & administración , Atención a la Salud/normas , Personal de Salud/psicología , Femenino , Personal de Salud/estadística & datos numéricos , Humanos , Liderazgo , Masculino , Motivación , Investigación Cualitativa , Mejoramiento de la Calidad
9.
BMC Musculoskelet Disord ; 21(1): 235, 2020 Apr 13.
Artículo en Inglés | MEDLINE | ID: mdl-32284057

RESUMEN

BACKGROUND: Physical activity is associated with positive health effects, but individuals with neuromuscular disease (NMD) may experience constraints being physically active. There is a gap in the literature on the activity level of people with NMDs, and therefore we did a study to determine the physical activity level in people with Limb-Girdle muscular dystrophy (LGMD) and Charcot-Marie-Tooth disease (CMT). METHODS: This study used a cross-sectional design to obtain self-reported physical activity and sitting time among individuals with LGMD and CMT who were recruited from the Norwegian registry for hereditary and congenital neuromuscular diseases. RESULTS: A total of 127 respondents who filled out questionnaires about either physical activity or sitting time were included in the analysis. Seventy (55.1%) had a diagnosis of CMT and 57 (44.9%) had a diagnosis of LGMD. Seventy-three (57.5%) respondents were female and 54 (42.5%) were male. Among the 108 respondents with available physical activity data, 44.4% reported being physically inactive. Among the 109 respondents with available sitting time data, the average sitting time was 8.6 h. Longer sitting time was associated with higher physical inactivity. CONCLUSION: Among people with LGMD and CMT in our study, 55.6% reported being physically active. Respondents with LGMD and CMT reported longer sitting time and less physical activity compared with healthy respondents in other studies. Further research should explore variables and measures that can promote physical activity among people with neuromuscular conditions.


Asunto(s)
Enfermedad de Charcot-Marie-Tooth/fisiopatología , Ejercicio Físico , Distrofia Muscular de Cinturas/fisiopatología , Autoinforme , Adolescente , Adulto , Anciano , Estudios Transversales , Evaluación de la Discapacidad , Femenino , Estado de Salud , Humanos , Modelos Logísticos , Masculino , Persona de Mediana Edad , Noruega , Sistema de Registros , Conducta Sedentaria , Adulto Joven
10.
BMC Neurol ; 19(1): 135, 2019 Jun 19.
Artículo en Inglés | MEDLINE | ID: mdl-31216995

RESUMEN

BACKGROUND: Myotonic Dystrophy 1 (DM1) causes progressive myopathy of extremity muscles. DM1 may also affect muscles of the trunk. The aim of this study was to investigate fat infiltration and muscle size in trunk muscles in DM1 patients, and in an age and gender matched control group. Further, explore how fat infiltration and degree of atrophy in these muscles are associated with motor and respiratory function in DM1 patients. METHOD: We measured fat infiltration and trunk muscle size by MRI in 20 patients with genetically confirmed classic form of DM1, and compared these cases with 20 healthy, age and gender matched controls. In the DM1 group, we investigated correlations between MRI findings and clinical measures of muscle strength, mobility and respiration. We used sum scores for fat infiltration and muscle size in trunk flexors and trunk extensors in the analysis of group differences and correlations. RESULTS: Significant differences between cases and controls were present for fat infiltration in trunk flexors (p = 0.001) and trunk extensors (p = < 0.001), and for muscle size in trunk flexors (p = 0.002) and trunk extensors (p = 0.030). Fat infiltration in trunk flexors were significant correlated to back extension strength (rho = - 0.523 p = 0.018), while muscle size in trunk flexors was significantly correlated to trunk flexion strength (rho = 0.506 p = 0.023). Fat infiltration in trunk flexors was significantly correlated with lower general mobility (rho = - 0.628, p = 0.003), reduced balance (rho = 0.630, p < 0.003) and forced vital capacity (rho - 0.487 p = 0.040). CONCLUSIONS: Trunk muscles in DM1 patients had significant higher levels of fat infiltration and reduced muscle size compared to age and gender matched controls. In DM1 patients, fat infiltration was associated with reduced muscle strength, mobility, balance and lung function, while muscle size was associated with reduced muscle strength and lung function. These findings are of importance for clinical management of the disease and could be useful additional outcome measures in future intervention studies.


Asunto(s)
Atrofia/patología , Músculo Esquelético/patología , Distrofia Miotónica/patología , Distrofia Miotónica/fisiopatología , Respiración , Torso/patología , Adulto , Estudios de Casos y Controles , Femenino , Humanos , Imagen por Resonancia Magnética , Masculino , Persona de Mediana Edad , Fuerza Muscular/fisiología , Debilidad Muscular/fisiopatología , Músculo Esquelético/fisiopatología , Adulto Joven
11.
J Interprof Care ; 32(1): 80-88, 2018 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-28985089

RESUMEN

High quality care relies on interprofessional teamwork. We developed a short simulation-based course for final year medical, nursing and nursing anaesthesia students, using scenarios from emergency medicine. The aim of this paper is to describe the adaptation of an interprofessional simulation course in an undergraduate setting and to report participants' experiences with the course and students' learning outcomes. We evaluated the course collecting responses from students through questionnaires with both closed-ended and open-ended questions, supplemented by the facilitators' assessment of students' performance. Our data is based on responses from 310 students and 16 facilitators who contributed through three evaluation phases. In the analysis, we found that students reported emotional activation and learning outcomes within the domains self-insight and stress management, understanding of the leadership role, insight into teamwork, and skills in team communication. In subsequent questionnaire studies students reported having gained insights about communication, teamwork and leadership, and they believed they would be better leaders of teams and/or team members after having completed the course. Facilitators' observations suggested a progress in students' non-technical skills during the course. The facilitators observed that nursing anaesthesia students seemed to be more comfortable in finding their role in the team than the two other groups. In conclusion, we found that an interprofessional simulation-based emergency team training course with a focus on leadership, communication and teamwork, was feasible to run on a regular basis for large groups of students. The course improved the students' team skills and received a favourable evaluation from both students and faculty.


Asunto(s)
Actitud del Personal de Salud , Relaciones Interprofesionales , Entrenamiento Simulado/organización & administración , Estudiantes de Medicina/psicología , Estudiantes de Enfermería/psicología , Comunicación , Procesos de Grupo , Humanos , Prácticas Interdisciplinarias , Liderazgo , Grupo de Atención al Paciente/organización & administración , Percepción
12.
Pediatr Blood Cancer ; 64(1): 121-127, 2017 01.
Artículo en Inglés | MEDLINE | ID: mdl-27472376

RESUMEN

BACKGROUND: In Norway, boys with hemophilia usually begin treatment after their first bleeding episode. Boys with severe hemophilia usually start prophylactic treatment around 18-24 months. Health professionals administer factor concentrate initially, but when boys are around 4 years old most parents start treating their children at home. There is a lack of research on how parents, and especially how carrier mothers, experience the medical treatment for their sons' hemophilia. Our aim was to investigate how carrier mothers experience this treatment in the hospital setting and at home. METHODS: In this qualitative study, we interviewed 16 mothers of boys or men with hemophilia A or B. Data were collected via semistructured interviews and analyzed using an inductive thematic analytical approach. RESULTS: Mothers experienced both practical and emotional challenges in relation to their sons' treatment, and repeated venipuncture was especially difficult emotionally. Parents preferred home treatment to hospital treatment because it was less time-consuming, less disruptive to family life, and provided a greater sense of control. Encountering healthcare professionals who were unfamiliar with hemophilia was a second major stress factor, especially when parents felt that health professionals lacked competence and were unwilling to seek advice. CONCLUSION: While home treatment for hemophilia enables freedom, flexibility, and autonomy for the boys as well as for the family, mothers may experience treatment of hemophilia as a burden. Health professionals should provide tailored practical and emotional support to parents by probing into their experiences with treating their sons' hemophilia.


Asunto(s)
Adaptación Psicológica , Hemofilia A/terapia , Madres/psicología , Padres/psicología , Adulto , Anciano , Consejo , Emociones , Femenino , Estudios de Seguimiento , Humanos , Masculino , Persona de Mediana Edad , Pronóstico , Investigación Cualitativa
13.
Health Qual Life Outcomes ; 15(1): 6, 2017 Jan 07.
Artículo en Inglés | MEDLINE | ID: mdl-28069034

RESUMEN

BACKGROUND: Huntington's disease (HD) is a rare neurodegenerative disorder with a prevalence of 6 per 100.000. Despite increasing research activity on HD, evidence on healthcare utilization, patients' needs for healthcare services and Health-Related Quality of Life (HRQoL) is still sparse. The present study describes HRQoL in a Norwegian cohort of HD patients, and assesses associations between unmet healthcare and social support service needs and HRQoL. METHODS: In this cross-sectional population-based study, 84 patients with a clinical diagnosis of HD living in the South-East of Norway completed the HRQoL questionnaire EuroQol, EQ-5D-3L. Unmet needs for healthcare and social support services were assessed by the Needs and Provision Complexity Scale (NPCS). Furthermore, functional ability was determined using the Unified Huntington's Disease Rating Scale (UHDRS) Functional assessment scales. Socio-demographics (age, gender, marital status, occupation, residence, housing situation) and clinical characteristics (disease duration, total functional capacity, comorbidity) were also recorded. Descriptive statistics were used to describe the patients' HRQoL. Regression analyses were conducted in order to investigate the relationship between unmet healthcare needs and self-reported HRQoL. RESULTS: The patients were divided across five disease stages as follows: Stage I: n = 12 (14%), Stage II: n = 22 (27%), Stage III: n = 19 (23%), Stage IV: n = 14 (16%), and Stage V: n = 17 (20%). Overall HRQoL was lowest in patients with advanced disease (Stages IV and V), while patients in the middle phase (Stage III) showed the most varied health profile for the five EQ-5D-3L dimensions. The regression model including level of unmet needs, clinical characteristics and demographics (age and education) accounted for 42% of variance in HRQoL. A higher level of unmet needs was associated with lower HRQoL (ß value - 0.228; p = 0.018) whereas a better total functional capacity corresponded to higher HRQoL (ß value 0.564; p < 0.001). CONCLUSIONS: The study findings suggest that patients with HD do not receive healthcare services that could have a positive impact on their HRQoL.


Asunto(s)
Necesidades y Demandas de Servicios de Salud/estadística & datos numéricos , Disparidades en Atención de Salud/estadística & datos numéricos , Enfermedad de Huntington/psicología , Enfermedad de Huntington/terapia , Calidad de Vida/psicología , Apoyo Social , Adulto , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Noruega , Análisis de Regresión , Autoinforme , Encuestas y Cuestionarios , Adulto Joven
14.
J Genet Couns ; 26(6): 1324-1332, 2017 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-28547664

RESUMEN

Studies on carriers of genetic disorders mainly focus on the process of genetic testing and reproductive choices, and less on how psychosocial aspects of being a carrier change over time. Our study sought to understand more about the psychosocial aspects of hemophilia carrier status, and thereby improve counseling aiming to advance carriers' quality of life and well-being. We analyzed 16 in-depth interviews from women who were carriers of hemophilia and had a son with hemophilia. Three themes emerged: Guilt and sorrow across generations; the choices and future consequences of genetic testing; and preparing to have a child with hemophilia. Experience with being a hemophilia carrier is a process that changes over time while feelings of guilt and sorrow run across generations. The carrier status may create "mothers-in-waiting" living at risk of having a sick child or not. The women think they are prepared to have a son with hemophilia, but experience more sadness than they expect when a son is diagnosed. Our findings suggest that health professionals, especially clinical geneticists and genetic counselors, carriers, families and patient organizations need to be aware that women's experiences of being a carrier of hemophilia changes during the biographical life course. The women may benefit from several rounds of genetic counseling at different stages of life.


Asunto(s)
Tamización de Portadores Genéticos , Hemofilia A/psicología , Madres/psicología , Calidad de Vida/psicología , Adulto , Niño , Femenino , Asesoramiento Genético , Pesar , Hemofilia A/genética , Humanos , Relaciones Madre-Hijo , Investigación Cualitativa
15.
Scand J Prim Health Care ; 35(1): 105-110, 2017 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-28277051

RESUMEN

OBJECTIVE: To explore general practitioners' (GPs) views on leadership roles and leadership challenges in general practice and primary health care. DESIGN: We conducted focus groups (FGs) with 17 GPs. SETTING: Norwegian primary health care. SUBJECTS: 17 GPs who attended a 5 d course on leadership in primary health care. RESULTS: Our study suggests that the GPs experience a need for more preparation and formal training for the leadership role, and that they experienced tensions between the clinical and leadership role. GPs recognized the need to take on leadership roles in primary care, but their lack of leadership training and credentials, and the way in which their practices were organized and financed were barriers towards their involvement. CONCLUSIONS: GPs experience tensions between the clinical and leadership role and note a lack of leadership training and awareness. There is a need for a more structured educational and career path for GPs, in which doctors are offered training and preparation in advance. KEY POINTS Little is known about doctors' experiences and views about leadership in general practice and primary health care. Our study suggests that: There is a lack of preparation and formal training for the leadership role. GPs experience tensions between the clinical and leadership role. GPs recognize leadership challenges at a system level and that doctors should take on leadership roles in primary health care.


Asunto(s)
Actitud del Personal de Salud , Medicina Familiar y Comunitaria , Médicos Generales , Liderazgo , Atención Primaria de Salud , Adulto , Concienciación , Medicina Familiar y Comunitaria/organización & administración , Femenino , Grupos Focales , Medicina General , Médicos Generales/educación , Humanos , Masculino , Persona de Mediana Edad , Noruega , Atención Primaria de Salud/organización & administración , Investigación Cualitativa
16.
J Genet Couns ; 25(5): 1085-92, 2016 10.
Artículo en Inglés | MEDLINE | ID: mdl-26948256

RESUMEN

Little is known about the experiences of women with Fabry disease. The aim of this study was to explore women's experiences of being heterozygous for Fabry disease. We used an explorative qualitative study design and selected ten Norwegian women who were known heterozygous for Fabry disease to participate. We conducted in-depth semi-structured interviews and analyzed the interviews using inductive thematic analysis. We found that learning about one's heterozygous status may be devastating for some. However, for most of the participants, heterozygous status, as well as doctors' acceptance of symptoms in women heterozygous for Fabry disease, provided an explanation and relief. Although many women did not consider themselves ill, they wished to be acknowledged as more than "just carriers." The participants were grateful for enzyme replacement therapy, although it had its burdens regarding time, planning, and absences from school or work. Women with Fabry disease felt that the lack of knowledge among healthcare professionals about Fabry disease was frustrating and worrisome. These findings suggest that healthcare professionals should acknowledge the different ways women react to their diagnosis, and be aware of the personal costs of receiving treatment.


Asunto(s)
Enfermedad de Fabry/psicología , Heterocigoto , Adulto , Anciano , Enfermedad de Fabry/genética , Femenino , Asesoramiento Genético , Humanos , Persona de Mediana Edad , Noruega , Investigación Cualitativa , Encuestas y Cuestionarios , Adulto Joven
17.
BMC Palliat Care ; 15: 22, 2016 Feb 24.
Artículo en Inglés | MEDLINE | ID: mdl-26911713

RESUMEN

BACKGROUND: Motor neurone disease (MND) is a progressive neurological disease causing muscle wasting, gradual paralysis, respiratory failure. MND care is demanding, complex and involves a variety of care tasks. Family members may experience significant and enduring strain. We conducted a qualitative study to understand more about family caregivers' work and sense of responsibility, exploring family caregivers' accounts of caring for a family member with MND. METHODS: We recruited and interviewed a total of 25 participants from Norway, including 17 current and eight bereaved family caregivers. Drawing on theories of care by Corbin and Strauss, we analysed the data by a theoretical reading of the material to identify different types of care work. RESULTS: We found that caregivers were engaged in five lines of care work that could be parallel or closely interconnected: i) immediate care work; ii) seeking information and clarity about the disease; iii) managing competing obligations; iv) maintaining normality; and v) managing external resources and assistance. Caregivers' priorities were shaped by their interactions with the person with MND, available assistive devices, the development of the illness, and utilisation of paid care. Care work had a symbolic and moral meaning for caregivers, and was associated with self-worth and respect from others. Caregivers tried to balance their own expectations and others' expectations without being overwhelmed by care work. CONCLUSIONS: A changing and potentially chaotic situation for family caregivers may compromise their capacity to utilise supportive services. Using the lines of work as a framework to assess caregivers' preferences and priorities, health professionals may tailor assistance and support to family members caring for persons with MND.


Asunto(s)
Cuidadores/psicología , Atención Domiciliaria de Salud/métodos , Enfermedad de la Neurona Motora/terapia , Adulto , Anciano , Costo de Enfermedad , Femenino , Humanos , Relaciones Interpersonales , Masculino , Persona de Mediana Edad , Noruega , Investigación Cualitativa , Apoyo Social , Estrés Psicológico/psicología
18.
Scand J Prim Health Care ; 34(2): 172-9, 2016 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-27092853

RESUMEN

OBJECTIVE: Feedback may be scarce and unsystematic during students' clerkship periods. We wanted to explore general practitioners' (GPs) and medical students' experiences with giving and receiving supervision and feedback during a clerkship in general practice, with a focus on their experiences with using a structured tool (StudentPEP) to facilitate feedback and supervision. DESIGN: Qualitative study. SETTING: Teachers and students from a six-week clerkship in general practice for fifth year medical students were interviewed in two student and two teacher focus groups. SUBJECTS: 21 GPs and nine medical students. RESULTS: We found that GPs first supported students' development in the familiarization phase by exploring the students' expectations and competency level. When mutual trust had been established through the familiarization phase GPs encouraged students to conduct their own consultations while being available for supervision and feedback. Both students and GPs emphasized that good feedback promoting students' professional development was timely, constructive, supportive, and focused on ways to improve. Among the challenges GPs mentioned were giving feedback on behavioral issues such as body language and insensitive use of electronic devices during consultations or if the student was very insecure, passive, and reluctant to take action or lacked social or language skills. While some GPs experienced StudentPEP as time-consuming and unnecessary, others argued that the tool promoted feedback and learning through mandatory observations and structured questions. CONCLUSION: Mutual trust builds a learning environment in which supervision and feedback may be given during students' clerkship in general practice. Structured tools may promote feedback, reflection and learning. Key Points Observing the teacher and being supervised are essential components of Medical students' learning during general practice clerkships. Teachers and students build mutual trust in the familiarization phase. Good feedback is based on observations, is timely, encouraging, and instructive. StudentPEP may create an arena for structured feedback and reflection.


Asunto(s)
Actitud del Personal de Salud , Prácticas Clínicas/métodos , Retroalimentación Formativa , Médicos Generales/psicología , Estudiantes de Medicina/psicología , Adulto , Educación de Pregrado en Medicina/métodos , Femenino , Grupos Focales , Humanos , Relaciones Interprofesionales , Masculino , Persona de Mediana Edad , Noruega , Encuestas y Cuestionarios
19.
J Gen Intern Med ; 30(5): 656-74, 2015 May.
Artículo en Inglés | MEDLINE | ID: mdl-25527339

RESUMEN

BACKGROUND: Physician leadership development programs typically aim to strengthen physicians' leadership competencies and improve organizational performance. We conducted a systematic review of medical literature on physician leadership development programs in order to characterize the setting, educational content, teaching methods, and learning outcomes achieved. METHODS: Articles were identified through a search in Ovid MEDLINE from 1950 through November 2013. We included articles that described programs designed to expose physicians to leadership concepts, outlined teaching methods, and reported evaluation outcomes. A thematic analysis was conducted using a structured data entry form with categories for setting/target group, educational content, format, type of evaluation and outcomes. RESULTS: We identified 45 studies that met eligibility criteria, of which 35 reported on programs exclusively targeting physicians. The majority of programs focused on skills training and technical and conceptual knowledge, while fewer programs focused on personal growth and awareness. Half of the studies used pre/post intervention designs, and four studies used a comparison group. Positive outcomes were reported in all studies, although the majority of studies relied on learner satisfaction scores and self-assessed knowledge or behavioral change. Only six studies documented favorable organizational outcomes, such as improvement in quality indicators for disease management. The leadership programs examined in these studies were characterized by the use of multiple learning methods, including lectures, seminars, group work, and action learning projects in multidisciplinary teams. DISCUSSION: Physician leadership development programs are associated with increased self-assessed knowledge and expertise; however, few studies have examined outcomes at a system level. Our synthesis of the literature suggests important gaps, including a lack of programs that integrate non-physician and physician professionals, limited use of more interactive learning and feedback to develop greater self-awareness, and an overly narrow focus on individual-level rather than system-level outcomes.


Asunto(s)
Curriculum , Educación de Postgrado en Medicina/organización & administración , Evaluación Educacional , Liderazgo , Femenino , Humanos , Masculino , Innovación Organizacional , Médicos/estadística & datos numéricos , Pautas de la Práctica en Medicina/organización & administración , Desarrollo de Programa , Evaluación de Programas y Proyectos de Salud
20.
Transfus Apher Sci ; 53(2): 228-32, 2015 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-25935295

RESUMEN

Little is known about the organizational impact of supervisory activities in blood banks. We did a study with the aim to explore health professional's experiences with the external audit of blood transfusion services in Norway. The audit and supervision brought attention to deficiencies in systems and practices, and had been a catalyst for quality improvement. We identify facilitators and barriers to change. While audits can bring attention to known deficiencies, and trigger improvement processes which previously have not been prioritized, involvement of senior management is important to secure change across departments.


Asunto(s)
Transfusión Sanguínea , Comisión sobre Actividades Profesionales y Hospitalarias , Atención a la Salud , Femenino , Humanos , Masculino , Noruega
SELECCIÓN DE REFERENCIAS
DETALLE DE LA BÚSQUEDA