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1.
BMJ Open ; 14(5): e083372, 2024 May 02.
Artículo en Inglés | MEDLINE | ID: mdl-38697766

RESUMEN

INTRODUCTION: The increasing elderly population has led to a growing demand for healthcare services. A hospital at home treatment model offers an alternative to standard hospital admission, with the potential to reduce readmission and healthcare consumption while improving patients' quality of life. However, there is little evidence regarding hospital at home treatment in a Danish setting. This article describes the protocol for a randomised controlled trial (RCT) comparing standard hospital admission to hospital at home treatment. The main aim of the intervention is to reduce 30-day acute readmission after discharge and improve the quality of life of elderly acute patients. METHODS AND ANALYSIS: A total of 849 elderly acute patients will be randomised in a 1:2 ratio to either the control or intervention group in the trial. The control group will receive standard hospital treatment in a hospital emergency department while the intervention group will receive treatment at home. The primary outcomes of the trial are the rate of 30-day acute readmission and quality of life, assessed using the European Quality of Life-5 Dimensions-5-Level instrument. Primary analyses are based on the intention-to-treat principle. Secondary outcomes are basic functional mobility, resource use in healthcare, primary and secondary healthcare cost, incremental cost-effectiveness ratio, and the mortality rate 3 months after discharge. ETHICS AND DISSEMINATION: The RCT was approved by the Ethical Committee, Central Denmark Region (no. 1-10-72-67-20). Results will be presented at relevant national and international meetings and conferences and will be published in international peer-reviewed journals. Furthermore, we plan to communicate the results to relevant stakeholders in the Danish healthcare system. TRIAL REGISTRATION NUMBER: NCT05360914.


Asunto(s)
Readmisión del Paciente , Calidad de Vida , Humanos , Readmisión del Paciente/estadística & datos numéricos , Anciano , Dinamarca , Ensayos Clínicos Controlados Aleatorios como Asunto , Alta del Paciente , Servicio de Urgencia en Hospital , Análisis Costo-Beneficio , Hospitalización , Servicios de Atención de Salud a Domicilio , Femenino , Masculino , Servicios de Atención a Domicilio Provisto por Hospital/economía , Anciano de 80 o más Años
2.
Age Ageing ; 53(3)2024 Mar 01.
Artículo en Inglés | MEDLINE | ID: mdl-38476101

RESUMEN

BACKGROUND: A small share of patients account for a large proportion of costs to the healthcare system in Denmark as in many Western countries. A telephone-based self-management support, proactive health support (PaHS), was suggested for prevention of hospitalisations for persons at risk of hospital admission. These persons have chronic diseases, unplanned hospitalisations and age ≥ 65 years. However, evidence is limited on whether this type of intervention is cost-effective. AIM: The aim of this study was to assess the incremental cost-utility ratio (ICER) of PaHS, compared with standard care. METHODS: The economic evaluation was nested within a randomised controlled trial, and was based on a health system perspective, with follow-up and time horizon of 12 months. We measured incremental costs per quality-adjusted life years (QALY) gained. Total average costs per patient included PaHS programme costs, and costs in hospitals, primary care and municipalities. We analysed differences by generalised linear models with Gamma distribution for costs and mixed models for QALY. RESULTS: We analysed data on 6,139 patients, where 3,041 received PaHS and 3,098 received usual care. We found no difference in healthcare costs, and programme costs were on average €1,762 per patient, providing incremental costs of €2,075. Incremental effects on QALY were 0.007, resulting in an ICER of €296,389 per QALY gained. CONCLUSION: We found no evidence of PaHS being cost-effective in this study, but the results will be used to identify new ways to organise similar interventions and identify patients with the objective to reduce health system costs per patient.


Asunto(s)
Automanejo , Humanos , Anciano , Análisis Costo-Beneficio , Hospitalización , Teléfono , Hospitales , Años de Vida Ajustados por Calidad de Vida , Calidad de Vida
3.
Artículo en Inglés | MEDLINE | ID: mdl-38472631

RESUMEN

BACKGROUND: Ethnic minority women are less likely to participate in cervical cancer uteri (CCU) screening compared to native women. Human Papillomavirus (HPV) self-sampling kits for CCU screening may be a potential strategy to increase participation. This study aimed to explore views and attitudes on four different types of self-sampling kits (two brushes, a first-void urine device, and a menstrual blood device) among non-Western ethnic minority women living in Denmark. METHODS: The study was a social science single case study based on focus group interviews with 30 women aged 32-54 with non-Western background from a deprived area. A phenomenological approach was applied to describe the phenomenon "self-sampling" as seen from the women's lifeworlds. The interviews were transcribed verbatim and analysed using systematic text condensation. RESULTS: The women expressed significant interest in the possibility of using HPV self-sampling kits as an alternative to being screened by their general practitioner. They were particularly motivated to use the non-invasive self-sampling kits for CCU screening as they were deemed suitable for addressing cultural beliefs related to their bodies and virginity. The women expressed interest in the use of the invasive self-sampling kits but were cautious, primarily due to lack of confidence in correctly performing self-sampling with a brush and due to cultural beliefs. CONCLUSION: The use of non-invasive self-sampling kits, such as a first-void urine collection device and menstrual blood pad, represents a promising solution to overcome cultural barriers and promote greater equality in CCU screening participation among non-Western ethnic minority women.

4.
J Health Serv Res Policy ; : 13558196241231169, 2024 Feb 02.
Artículo en Inglés | MEDLINE | ID: mdl-38308439

RESUMEN

OBJECTIVE: To examine the projects of professionalisation and institutionalisation forming health care professions' engagement in quality improvement collaborative (QIC) implementation in Denmark, and to analyse the synergies and tensions between the two projects given the opportunities afforded by the QICs. METHODS: This was a cross-sectional interview study with professionals involved in the implementation of two national QICs in Denmark involving 23 individual interviews and focus group discussions with 75 people representing different professional groups. We conducted a reflexive thematic analysis of the data, drawing on institutional contributions to organisational studies of professions. RESULTS: Study participants engaged widely in QIC implementation. This engagement was formed by a constructive interplay between the professions' projects of professionalisation and institutionalisation, with only few tensions identified. The project of professionalisation relates to a self-oriented agenda of contributing professional expertise and promoting professional recognition and development, while the project of institutionalisation focuses on improving health care processes and outcomes and advancing quality improvement. Both projects were largely similar across professional groups. The interplay between the two projects was enabled by the bottom-up approach to implementation, participation of QI specialists, and a clear focus on developing and delivering high-quality patient care. CONCLUSIONS: Future strategies for QIC implementation should position QICs as a framework that promotes the integration of professions' projects of professionalisation and institutionalisation to successfully engage professionals in the implementation process, and thereby optimise the effectiveness of QICs in health care.

5.
BMC Public Health ; 23(1): 1472, 2023 08 02.
Artículo en Inglés | MEDLINE | ID: mdl-37532983

RESUMEN

BACKGROUND: COVID-19 has highlighted the importance of patient activation in managing chronic conditions and promoting resilience during times of crisis. Patient activation refers to an individual's knowledge, skills, and confidence in managing their own health and healthcare. Previous research has shown that people with higher levels of patient activation are better prepared to navigate the challenges of chronic illness and are more likely to engage in healthy behaviors. However, the impact of patient activation on COVID-19-related concerns and mental well-being among people with chronic conditions during the pandemic remains unclear. This study aims to investigate the possible role of patient activation in shaping COVID-19-related concerns and to describe changes in mental well-being among Danish adults with one or more chronic conditions during the early months of the pandemic. METHODS: Danish adults with chronic conditions (e.g. diabetes, coronary heart disease, obstructive pulmonary lung disease, cancer) who had participated in a municipal health education program prior to the COVID-19 outbreak were asked to participate in this prospective questionnaire study in May 2020 and November 2020. Sociodemographic (sex, age, living status, educational attainment, employment status) and disease-related information (diagnosis, one or more chronic conditions) along with the Patient Activation Measure were collected before the outbreak and were obtained from a clinical database used for monitoring and evaluation of municipal health education programs. In contrast, the two questionnaires collected six months apart consisted of single items related to concerns about COVID-19 and the WHO-5 well-being index. RESULTS: A total of 710 people with chronic conditions (mean age 60.9 years; 55.8% female) participated at both time points. In bivariate analyses, patient activation was associated with COVID-19-related concern and well-being. At follow-up, participants experienced a significant decrease in well-being. The decrease was associated with poorer well-being measured six months earlier, a greater perception that it had become more challenging to take care of one's health due to the pandemic, and finally, feeling lonely. The association between patient activation and well-being ceased to be significant in the multivariate regression model. CONCLUSIONS: A considerable proportion of people with chronic conditions participating in this study have been mentally burdened during COVID-19. Although lower levels of patient activation were associated with greater COVID-19-related concerns, it did not have a significant impact on mental well-being over time.


Asunto(s)
COVID-19 , Adulto , Humanos , Femenino , Persona de Mediana Edad , Masculino , COVID-19/epidemiología , Estudios de Cohortes , Pandemias , Estudios Prospectivos , Participación del Paciente , Dinamarca/epidemiología
6.
Heliyon ; 9(7): e17752, 2023 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-37449182

RESUMEN

Background: Self-management support models adapted to accommodate the needs of each patient are complex interventions that should be evaluated for intervention mechanisms. In a national randomized controlled trial (RCT), we evaluated the efficacy of telephone-based self-management support that demonstrated improved health-related quality of life (HRQoL), no reduction in hospital admissions, and an unexpected increase in primary healthcare services. Objective: The objective of this study is to identify RCT impact mechanisms and explore which participants could benefit the most from the PaHS intervention. Methods: This study evaluates intervention mechanisms through interaction analyses of predefined intervention moderators (sex, age, education, chronic disease, risk of hospital admissions, and coping) and post-hoc intervention mediators (contacts in primary care and anxiety medication). The one co-primary outcome HRQoL was assessed with SF26v2 and analyzed with generalized linear mixed models and the other co-primary hospital admissions was analyzed with poisson regression. Results: PaHS interacted with diabetes, multimorbidity, coping, and anxiety medication on the outcome hospital admissions. PaHS led to a significant reduction in hospital admissions in participants with diabetes or multimorbidity and an increase in hospital admissions in participants with higher baseline coping and participants using anxiety medication. The interaction analyses revealed significant intervention mediation in the outcome HRQoL by sex and diabetes. Conclusions: Participants with diabetes, multimorbidity, and women could benefit the most from telephone-based self-management support, but the intervention involves the risk of over-treatment.

7.
BMJ Open ; 12(12): e064067, 2022 12 26.
Artículo en Inglés | MEDLINE | ID: mdl-36572495

RESUMEN

OBJECTIVE: To identify measures used within Denmark evaluating any type of intervention designed to facilitate patient involvement in healthcare. DESIGN: Environmental scan employing rapid review methods. DATA SOURCES: MEDLINE, PsycInfo and CINAHL were searched from 6-9 April 2021 from database inception up to the date of the search. ELIGIBILITY CRITERIA: Quantitative, observational and mixed methods studies with empirical data on outcomes used to assess any type of intervention aiming to increase patient involvement with their healthcare. Language limitations were Danish and English. DATA EXTRACTION AND SYNTHESIS: Two independent reviewers extracted data from 10% of the included studies and, due to their agreement, the data from the rest were extracted by first author. Data were analysed with reference to existing categories of measuring person-centred care; findings were synthesised using narrative summaries. Adapted Preferred Reporting Items for Systematic Reviews and Meta-Analyses 2020 guidelines were used to guide reporting. RESULTS: Among 3767 records, 43 studies met the inclusion criteria, including 74 different measures used to evaluate interventions aimed at increasing patient involvement within healthcare in Danish hospital and community settings. Generic measures assessed: patient engagement (n=3); supporting self-management (n=8); supporting shared decision-making (n=9); patient satisfaction and experiences of care (n=11); health-related patient-reported outcome (n=20). CONCLUSIONS: Across Denmark, complex interventions designed to improve patient involvement with healthcare vary in their goals and content. Some targeting healthcare professionals, some patient health literacy and some service infrastructure. A plethora of measures assess the impact of these interventions on patient, professional and service delivery outcomes. Few measures assessed patient involvement directly, and it is unclear which proxy measures capture indicators of perceived involvement. Lack of conceptual clarity between intervention goals, the components of change and measures makes it difficult to see what types of intervention can best support change in services to ensure patients are more effectively involved in their healthcare.


Asunto(s)
Personal de Salud , Participación del Paciente , Humanos , Hospitales , Lenguaje , Dinamarca
8.
Age Ageing ; 51(10)2022 10 06.
Artículo en Inglés | MEDLINE | ID: mdl-36201327

RESUMEN

BACKGROUND: Persons with frequent hospital admissions have a disease burden that may exceed their self-management skills. The evidence base of telephone-based interventions to support self-management is poor with mixed results. The aim of this study is to evaluate the effect of Proactive Health Support (PaHS): telephone-based self-management support for persons with risk of hospitalizations. METHODS: This study is a national randomised controlled trial of PaHS versus usual universal tax-funded healthcare. Participants were persons at risk of emergency hospital admissions. The intervention began with a physical start-up session followed by telephone sessions of self-management support. The two co-primary outcomes were Health-Related Quality of Life (HRQoL) (Mental Health Component Summary Score of SF36v2) analysed with mixed models and hospital admissions analysed with Poisson regression at 6 months. Secondary outcomes were at 3- and 12-month follow-up and disease subgroup analyses. RESULTS: During the study period, 6,402 persons were randomised (3,190 intervention, 3,212 control). HRQoL was significantly improved at 6 months (Est. 1.4992, P = <0.0001) and at 3 and 12 months on all 10 scales. There was no overall effect on hospital admissions at 6 months with an adjusted estimate of 0.0074 (P = 0.8691). Persons with diabetes had significant improvement of HRQoL and reduced hospital admissions. CONCLUSIONS: The PaHS intervention improved HRQoL for all participants and reduced hospital admissions for persons with diabetes only.


Asunto(s)
Calidad de Vida , Automanejo , Hospitalización , Hospitales , Humanos , Teléfono
9.
Health Policy ; 126(8): 749-754, 2022 08.
Artículo en Inglés | MEDLINE | ID: mdl-35672172

RESUMEN

Policy-makers worldwide place quality in health care high on their agendas. Inspired by global trends within health care governance, there has been an increase in patient-oriented and network-based models for quality improvement. In 2015, the Danish Government introduced the Danish Health Care Quality Programme (DHCQP) for the entire Danish health care system in line with this development. For the first time in Denmark, the DHCQP introduced network-based quality improvement collaboratives (QICs) as a model for the implementation of a national quality improvement reform. This article presents the organisational set up and anticipated effects of using QICs within the DHCQP. The Danish set-up is related to the common international use of QICs and the existing evidence for their effectiveness and implementation. The analysis demonstrates a novel organisational set-up embedded in the organisation of the QICs. Furthermore, the article points to two main trends in the DHCQP, namely, centralisation of quality improvement strategies and integration of quality improvement work in clinical practices, and furthermore proposes a need for future research concerning implementation of QICs. Particularly, there is a need to investigate the different activities and organisational mechanisms in the implementation process and how these influence the implementation and functioning of QICs.


Asunto(s)
Conducta Cooperativa , Mejoramiento de la Calidad , Altruismo , Atención a la Salud , Dinamarca , Humanos , Calidad de la Atención de Salud
10.
Pharmacoecon Open ; 6(2): 179-192, 2022 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-34997899

RESUMEN

BACKGROUND: Health anxiety is a prevalent and debilitating disorder associated with extensive use of healthcare services and reduced quality of life (QoL). Regional variability in specialised clinics or specialist healthcare providers limits access to evidence-based treatment, which may be overcome by internet-delivered Acceptance and Commitment Therapy (iACT). OBJECTIVE: This study investigated the cost effectiveness of iACT for severe health anxiety in adults. METHODS: Based on a Danish randomised controlled trial (March 2016-March 2017), the economic evaluation compared costs and effects between iACT and an active control condition (iFORUM). Effectiveness was measured using self-report questionnaires. The cost analysis applied a societal perspective. Resource use and healthcare costs were extracted from the Danish National Registries. Linear regression analysis was applied using change in costs/effectiveness outcomes as the dependant variable. Time, group, and interaction between time and group were independent variables. The primary outcome was the proportion of clinically significant improvements, defined as a ≥ 25% reduction in two measures of health anxiety. The probability of cost effectiveness was presented in a cost-effectiveness acceptability curve for a range of threshold values for willingness to pay. RESULTS: No significant differences were detected in healthcare costs between groups; however, the iACT group significantly improved in all effectiveness outcomes. The economic analysis showed that, from the healthcare perspective, iACT was associated with an incremental cost-effectiveness ratio of €33 per additional case of clinically significant improvement compared with iFORUM and that, from the societal perspective, iACT dominated iFORUM because it was more effective and less expensive. CONCLUSIONS: We found no statistically significant differences in costs between groups; however, iACT for severe health anxiety may be cost effective, as evidenced by significant differences in effect. TRIAL REGISTRY NUMBER: Clinicaltrials.gov, no. NCT02735434.

11.
BMC Health Serv Res ; 20(1): 767, 2020 Aug 20.
Artículo en Inglés | MEDLINE | ID: mdl-32814588

RESUMEN

BACKGROUND: For several years mobile X-ray equipment has been routinely used for imaging in patients too unwell within the hospital, when transportation to the radiology department was inadvisable. Now, mobile X-ray examinations are also used outside the hospital. The literature describes that fragile patients may benefit from mobile X-ray, but we need to provide insights into the breadth, depth and gaps in a body of literature. METHODS: The scoping review was performed by searching PubMed, Cinahl, Embase, EconLit and Health Technology Assessment. English-, Danish-, Norwegian-, German-, Italian-, French- and Swedish-language studies, published 1.1.2009-1.5.2020 about mobile X-ray outside the hospital were included. Participants were patients examined using mobile X-ray as the intervention. PRISMA was used when eligible to build up the review. To extract data from the selected articles, we used a structured summary table. RESULTS: We included 12 studies in this scoping review. The results were divided into four topics:1. Target population 2. Population health 3. Experience of care and 4. Cost effectiveness. The main findings are that target population could be larger for instance including hospice patients for palliative care, group dwelling for people with intellectual disabilities, or psychiatric patients, population health may be improved, image quality seems to be good and mobile X-ray may be cost effective. Limitations of language, databases and grey literature may have resulted in studies being missed. CONCLUSIONS: Mobile X-ray may be used outside hospital. There seems to be potential benefits to both patients and health care staff. Based on the published studies it is not possible to draw a final conclusion if mobile X-ray examination is a relevant diagnostic offer and for whom. Further studies are needed to assess the feasibility of use in fragile patients, also regarding staff, relatives and societal consequences and therefore the topic mobile X-ray needs more research.


Asunto(s)
Radiografía/instrumentación , Telemedicina , Análisis Costo-Beneficio , Humanos , Radiografía/economía , Evaluación de la Tecnología Biomédica
12.
Glob Qual Nurs Res ; 7: 2333393620930026, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-32656297

RESUMEN

Proactive Health Support (PaHS) is a large-scale intervention in Denmark carried out by registered nurses (RNs) who provide self-management support to people at risk of hospital admission to enhance their health, coping, and quality of life. PaHS is initiated with a face-to-face session followed by telephone conversations. We aimed to explore the start-up sessions, including if and how the relationship between participants and RNs developed at the onset of PaHS. We used an ethnographic design including observations and informal interviews. Data were analyzed using a phenomenological-hermeneutical approach. The study showed that contexts such as hospitals and RNs legitimized the intervention. Face-to-face communication contributed to credibility, just as the same RN throughout the intervention ensured continuity. We conclude that start-up sessions before telephone-based self-management support enable a trust-based relationship between participants and RNs. Continuous contact with the same RNs throughout the session promoted participation in the intervention.

13.
Health Policy ; 124(7): 674-678, 2020 07.
Artículo en Inglés | MEDLINE | ID: mdl-32507526

RESUMEN

In Denmark, as in many other Western countries, a small group of people are major hospital users and account for a large proportion of health care spending. Proactive Health Support (PaHS) is the first national Danish program that aims to reduce health care consumption targeting people at risk of becoming major users of health services. PaHS was part of the government's The sooner-the better national health policy, which includes a focus on policy programs targeting the weakest and most complex chronic patients at risk of high health care consumption. PaHS is a telephone-based self-management support program that uses a prediction model to identify people at high risk of acute hospital admissions. Reducing preventable hospital admissions and enhancing quality of life are central policy goals. The Danish policy was inspired by a Swedish policy program, and PaHS has been implemented based on policy transfer with political expectations that the Swedish results can be replicated in Denmark. The effects of PaHS are currently under study, and time will show whether expectations can be met. This paper discusses institutional conditions and expectations related to replicating a policy program and its outcomes. In addition, it highlights implementation issues that may affect the success of the policy program.


Asunto(s)
Motivación , Automanejo , Dinamarca , Humanos , Calidad de Vida , Teléfono
14.
Contemp Clin Trials ; 93: 106004, 2020 06.
Artículo en Inglés | MEDLINE | ID: mdl-32320846

RESUMEN

BACKGROUND: A small proportion of patients account for most of the healthcare costs. Previous studies of supportive interventions have several methodological limitations and results are mixed. This article describes the protocol for Proactive Health Support: a national randomized controlled trial of telephone-based self-management support (ClinicalTrials.gov, NCT03628469). The main aim of the intervention is to reduce hospital admissions and improve quality of life at six months. METHODS: A sample size of 4400 is needed and individuals with the highest risk of hospital admission in Denmark are invited by electronic communication and telephone to participate in a 1:1 randomized controlled trial. The intervention group receives one face-to-face start-up session followed by telephone sessions about individual goals regarding participants' knowledge, coping and need of healthcare. Quality of life was assessed with the mental health composite score of the SF-36v2 questionnaire. Primary analyses are done using the intention-to-treat principle. DISCUSSION: The trial has been approved by The Regional Committee on Health Research Ethics (SJ-677). Intervention nurses do not assume clinical responsibility for the participants and the intervention is an addition to the general healthcare services. The intervention is complex due to challenging skills and behaviors required by nurses, individual tailoring of the intervention, and interacting intervention components. The study therefore includes process evaluation. The research program comprises: 1. Development initiation, 2. Intervention effect, 3. Cost-effectiveness, 4. Organizational implementation, and 5. Participants' experiences. Inclusion to the trial began April 9th, 2018, was completed July 1st, 2019 and follow-up will be completed February 1st, 2020.


Asunto(s)
Admisión del Paciente/estadística & datos numéricos , Calidad de Vida , Automanejo/métodos , Teléfono , Adaptación Psicológica , Análisis Costo-Beneficio , Dinamarca , Femenino , Objetivos , Conocimientos, Actitudes y Práctica en Salud , Estado de Salud , Humanos , Masculino , Salud Mental , Satisfacción del Paciente , Desarrollo de Programa , Evaluación de Programas y Proyectos de Salud , Proyectos de Investigación , Factores de Riesgo
15.
BMJ Open ; 9(3): e026825, 2019 03 13.
Artículo en Inglés | MEDLINE | ID: mdl-30867204

RESUMEN

OBJECTIVES: To examine how pregnant couples experience receiving a prenatal diagnosis of Down syndrome (DS) by phone-a practice that has been routine care in the Central Denmark Region for years. DESIGN: Qualitative interview study. SETTING: Participants were recruited from hospitals in Central Denmark Region, Denmark. PARTICIPANTS: Couples who had received a prenatal diagnosis of DS by phone and decided to terminate the pregnancy. They were recruited from the obstetric department where the termination was undertaken. During the study period (February 2016 to July 2017), 21 semistructured, audio-recorded interviews were conducted by an experienced anthropologist. Interviews were conducted 4-22 weeks after the diagnosis and analysed using thematic analysis. RESULTS: A prearranged phone call was considered an acceptable practice. However, the first theme 'Expected but unexpected' shows how the call often came earlier than expected. Consequently, most women were not with their partner and were thus initially alone with their grief and furthermore responsible for informing their partner, which some considered difficult. The second theme 'Now what?' shows how during the phone calls, physicians were quick to enquire about the couples' agendas. As the majority had already decided to seek termination of pregnancy, the dialogue focused on related questions and arrangements. Only half of the couples received additional counselling. CONCLUSION: A prearranged phone call was considered an acceptable and appropriate practice. However, some aspects of this practice (particularly related to the context of the call) showed to be less than optimal for the couples. To make sure that a diagnostic result is delivered in accordance with the couples' needs and requests, the context of the call could be addressed and agreed on in advance by physicians and couples.


Asunto(s)
Aborto Eugénico , Toma de Decisiones , Síndrome de Down/diagnóstico , Mujeres Embarazadas/psicología , Diagnóstico Prenatal/psicología , Esposos/psicología , Aborto Eugénico/psicología , Adulto , Dinamarca/epidemiología , Escolaridad , Femenino , Humanos , Entrevistas como Asunto , Acontecimientos que Cambian la Vida , Masculino , Embarazo , Investigación Cualitativa , Teléfono
16.
Acta Obstet Gynecol Scand ; 97(10): 1228-1236, 2018 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-29791717

RESUMEN

INTRODUCTION: In Denmark, first trimester screening has a very high uptake (>90%). If Down syndrome is diagnosed, termination rates are high (>95%). The aim of this study was to investigate the timing of the decision to terminate pregnancy following a diagnosis of Down syndrome and the factors influencing this decision. MATERIAL AND METHODS: Semi-structured, qualitative interview study with 21 couples who had received a prenatal diagnosis of Down syndrome and decided to terminate the pregnancy. Participants were recruited from obstetric departments between February 2016 and July 2017. Data were analyzed using thematic analysis. RESULTS: Five themes were identified: "initial decision-making", "consolidating the decision", "reasons and concerns shaping the termination of pregnancy decision", "the right decision is also burdensome", and "perceived influences in decision-making". For most couples, the initial decision to terminate pregnancy was made before or during the diagnostic process, but it was re-addressed and consolidated following the actual diagnosis. Imagining a family future with a severely affected Down syndrome child was the main factor influencing the termination of pregnancy decision. The decision was articulated as "right" but also as existentially burdensome for some, due to fear of regret and concern about ending a potential life. The decision to terminate pregnancy was considered a private matter between the couple, but was refined through interactions with clinicians and social networks. CONCLUSION: All couples made an initial decision prior to receiving the Down syndrome diagnosis. Knowledge of the couple's initial decision may facilitate patient-centered communication during and after the diagnostic process. Couples may benefit from counseling to deal with grief and existential concerns.


Asunto(s)
Aborto Eugénico/psicología , Síndrome de Down/psicología , Mujeres Embarazadas/psicología , Atención Prenatal/psicología , Diagnóstico Prenatal/psicología , Adulto , Toma de Decisiones , Dinamarca , Femenino , Humanos , Aceptación de la Atención de Salud/psicología , Embarazo , Primer Trimestre del Embarazo
17.
Prenat Diagn ; 37(8): 731-743, 2017 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-28614902

RESUMEN

OBJECTIVE: A severe or lethal prenatal diagnosis places great demands on prospective parents, who face choices of far-reaching consequences, such as continuing or terminating the pregnancy. How best to support these parents is a clinical challenge. This systematic review aimed to identify and synthesize the qualitative evidence regarding prospective parents' responses to such prenatal diagnoses. METHODS: Following PRISMA guidelines, four databases were systematically searched and 28 studies met the inclusion criteria. Thematic analysis guided data extraction and synthesis of findings. The Confidence in the Evidence for Reviews of Qualitative research assessment tool was utilized to assess confidence in the findings. RESULTS: Prospective parents experienced multiple losses, for example, of the healthy child, normal pregnancy and envisioned future. After diagnosis, they requested timely and reliable information and empathetic continued interaction with clinicians. Prospective parents who continued the pregnancy wished to be acknowledged as parents and engaged in planning to obtain a sense of meaning and control. Selective disclosure and concerns about negative responses were issues both for the parents who terminated and those who continued a pregnancy. CONCLUSION: Clinicians can support parental coping following a severe prenatal diagnosis through continued dialogue and collaboration. Further research is needed on the experiences of parents who choose to terminate a pregnancy following prenatal diagnosis. © 2017 John Wiley & Sons, Ltd.


Asunto(s)
Anomalías Congénitas , Padres/psicología , Diagnóstico Prenatal/psicología , Humanos
18.
Disabil Rehabil ; 39(3): 301-313, 2017 02.
Artículo en Inglés | MEDLINE | ID: mdl-26882958

RESUMEN

Purpose To provide a systematic overview of current qualitative systematic reviews and metasyntheses of patients' and informal carers' experiences with rehabilitation and life after stroke following discharge. Method A systematic literature search was performed based on PRISMA guidelines. Nine databases were systematically searched by a university librarian. The search yielded 1093 unique entries and screening by title/abstract identified 60 reviews for potential inclusion. After full-text assessment by two independent observers, 11 reviews satisfied the inclusion criteria. Following quality appraisal, four studies were excluded. Results Seven qualitative reviews (containing 108 primary studies) were included: five reviews of patients' experiences and two reviews of carers' experiences. Stroke causes profound disruption of life as known, and both patients and carers must engage in a process of adapting and rebuilding a post-stroke life and identity. This process of rehabilitation is described as temperamental and unstable rather than progressive. From the reviews, five key experiences in this process are identified: autonomy, uncertainty, engagement, hope and social relations. Conclusions The need for broad, qualitative syntheses of stroke patients' experiences is currently fulfilled. Future qualitative reviews could focus more on implications for practice, e.g., by grading the quality of the metafindings. Implications for Rehabilitation Stroke is a profound disruption of life as known, and patients and carers value information that helps them prepare for and adjust to this new situation. Optimal rehabilitation is a main concern and goal for patients and carers, and thus carers may be a valuable asset to professionals in the rehabilitation process. Practical and emotional support is important for patients and carers, and rehabilitation professionals should be aware of the increased risk of social isolation post-stroke. Hope is a strong motivational factor and coping strategy for patients and carers. However, as hope may wane in the case of continued residual impairment, rehabilitation professionals should prepare patients and carers for this situation.


Asunto(s)
Actividades Cotidianas , Adaptación Psicológica , Cuidadores/psicología , Satisfacción Personal , Rehabilitación de Accidente Cerebrovascular , Accidente Cerebrovascular/psicología , Humanos , Resultado del Tratamiento
19.
Scand J Caring Sci ; 31(2): 302-311, 2017 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-27481568

RESUMEN

BACKGROUND: Early supported discharge (ESD) allows mild-to-moderate stroke patients to return home as soon as possible and continue rehabilitation at their own pace in familiar surroundings. Thus, the main responsibility for continued rehabilitation is in the hands of patients and their partners, who must collaborate to adjust to poststroke everyday life. However, couples' joint experiences of stroke, early discharge and rehabilitation at home remain minimally investigated. AIM: To investigate how mild stroke patients' and their partners' experience and manage everyday life in a context of ESD. METHODS: We conducted qualitative interviews with a purposive sample of 22 ESD patients and 18 partners. Interviews were conducted 3-6 weeks after stroke, and we used thematic analysis to analyse the data. FINDINGS: The analysis identified three themes. First, 'Home as a healing place' involved the couples' experiences of a well-informed discharge from hospital. They trusted the health professionals' assessment that the patient was ready to go home. They described home as a comforting and calm place, where recovery could meaningfully take place. The second theme, 'Flow of everyday life', comprised the experiences of adapting to and continuing everyday life. Most of the interviewees had relatively minor physical and cognitive impairments, and the patients and their partners were hopeful for a full recovery in the foreseeable future. Finally, 'Professional safety net' involved the much appreciated stroke team. Although most of the participants only had one visit from the team, knowing that they were an accessible resource was very important to the couples. CONCLUSION: ESD was experienced as a meaningful and adequate rehabilitation service that allowed patients and partners to collaboratively reinvent and rebuild their flow of everyday life by jointly adjusting routines, activities and their relationship.


Asunto(s)
Servicios de Atención de Salud a Domicilio , Alta del Paciente , Rehabilitación de Accidente Cerebrovascular , Accidente Cerebrovascular/terapia , Anciano , Anciano de 80 o más Años , Dinamarca , Femenino , Humanos , Masculino , Persona de Mediana Edad , Investigación Cualitativa
20.
Anthropol Med ; 23(1): 86-101, 2016.
Artículo en Inglés | MEDLINE | ID: mdl-26431350

RESUMEN

This paper is based on ethnographic fieldwork at an obstetric ultrasound unit in Denmark and explores the few, intense minutes of clinical interaction following a high-risk screening result for Down's syndrome. The category of high-risk transforms the routine ultrasound into a situation of inescapable choice, where the health of the foetus is questioned and decisions must be made. The clinical interactions following a high-risk result are investigated as processes of production, and the concepts of logic of choice and the logic of care are employed as analytical tools for identifying different rationales at play in the situation. The analysis shows that sonographers and women/couples collaboratively engage in logics of choice and care. Their mutual aim is to make the high-risk results meaningful and manageable so that a decision can be made. In this process initiative is shifted back and forth. Through a logic of care, complexity is reduced and statistics transformed by emphasising certain interpretations and leaving others unspoken. However, the logic of choice is also collectively maintained by positioning the women/couples as decision-makers. It is argued that in the obstetric ultrasound unit, the logic of choice provides a powerful frame, with the logic of care filling in the gaps and discontinuities to facilitate decisions. In this context, the logics are complementary rather than competing, and thus the analysis add new perspectives to the original concepts. In sum, the logics of choice and care provide a valuable analytical tool for interpreting and understanding the complex and collaborative practices of clinical interaction.


Asunto(s)
Ultrasonografía Prenatal , Actitud del Personal de Salud , Conducta de Elección , Dinamarca/etnología , Femenino , Humanos , Embarazo , Riesgo
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