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Ekman, Nina, et al.
(författare)
Observable indicators of person-centred care: an interview study with patients, relatives and professionals
2022
Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 12:4
Tidskriftsartikel (refereegranskat) abstract
Objective To identify key observable indicators of person-centred care (PCC) from interviews with patients, relatives and professionals with experience of receiving or working with PCC. Design A qualitative interview study using deductive content analysis. Setting Primary and hospital care settings in Western Sweden. Participants Twelve participants with extensive experience of receiving or working with PCC were interviewed: two patients, two patients representative with long-term conditions, one relative and informal carer, three registered nurses, one physician, two occupational therapists and one social worker/researcher. Results Nine observable indicators were identified and subsumed under three predetermined categories: initiating, working and safeguarding the partnership. The first category comprised three subcategories: welcoming, interested and courteous reception; agreeing on structure and aims of the conversation; and eliciting patients' wishes for involvement of significant others. The second category comprised four subcategories: attentive, empathic and encouraging manner; promoting mutual understanding; promoting patient engagement; and encouraging and friendly body language. The last category consisted of two subcategories: collaboration and transparency in documentation and verifying that patient's and professional's views, goals and wants are correctly documented. Conclusion Our results underline the need for health professionals to actively and conscientiously convey to patients their interest in and respect for the patient as a person and their willingness to collaborate as partners in their care from the very outset of the interaction. Non-verbal behaviours were seen to play a major role in shaping patients' impressions of health professionals. Given that patients' first impressions were considered to impact the content, course and outcomes of the interaction, more research attention should be given to their implications for the effective delivery of PCC.
3.
Van Bulck, Liesbet, et al.
(författare)
Healthcare system inputs and patient-reported outcomes : a study in adults with congenital heart defect from 15 countries
2020
Ingår i: BMC Health Services Research. - : Springer Science and Business Media LLC. - 1472-6963. ; 20:1
Tidskriftsartikel (refereegranskat) abstract
BACKGROUND: The relationship between healthcare system inputs (e.g., human resources and infrastructure) and mortality has been extensively studied. However, the association between healthcare system inputs and patient-reported outcomes remains unclear. Hence, we explored the predictive value of human resources and infrastructures of the countries' healthcare system on patient-reported outcomes in adults with congenital heart disease.METHODS: This cross-sectional study included 3588 patients with congenital heart disease (median age = 31y; IQR = 16.0; 52% women; 26% simple, 49% moderate, and 25% complex defects) from 15 countries. The following patient-reported outcomes were measured: perceived physical and mental health, psychological distress, health behaviors, and quality of life. The assessed inputs of the healthcare system were: (i) human resources (i.e., density of physicians and nurses, both per 1000 people) and (ii) infrastructure (i.e., density of hospital beds per 10,000 people). Univariable, multivariable, and sensitivity analyses using general linear mixed models were conducted, adjusting for patient-specific variables and unmeasured country differences.RESULTS: Sensitivity analyses showed that higher density of physicians was significantly associated with better self-reported physical and mental health, less psychological distress, and better quality of life. A greater number of nurses was significantly associated with better self-reported physical health, less psychological distress, and less risky health behavior. No associations between a higher density of hospital beds and patient-reported outcomes were observed.CONCLUSIONS: This explorative study suggests that density of human resources for health, measured on country level, are associated with patient-reported outcomes in adults with congenital heart disease. More research needs to be conducted before firm conclusions about the relationships observed can be drawn.TRIAL REGISTRATION: ClinicalTrials.gov: NCT02150603. Registered 30 May 2014.
4.
Moons, Philip, 1968, et al.
(författare)
Patient-reported outcomes in adults with congenital heart disease : Inter-country variation, standard of living and healthcare system factors
2018
Ingår i: International Journal of Cardiology. - : Elsevier BV. - 0167-5273 .- 1874-1754. ; 251, s. 34-41
Tidskriftsartikel (refereegranskat) abstract
AimsGeographical differences in patient-reported outcomes (PROs) of adults with congenital heart disease (ConHD) have been observed, but are poorly understood. We aimed to: (1) investigate inter-country variation in PROs in adults with ConHD; (2) identify patient-related predictors of PROs; and (3) explore standard of living and healthcare system characteristics as predictors of PROs.Methods and resultsAssessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease – International Study (APPROACH-IS) was a cross-sectional, observational study, in which 4028 patients from 15 countries in 5 continents were enrolled. Self-report questionnaires were administered: patient-reported health (12-item Short Form Health Survey; EuroQOL-5D Visual Analog Scale); psychological functioning (Hospital Anxiety and Depression Scale); health behaviors (Health Behavior Scale–Congenital Heart Disease) and quality of life (Linear Analog Scale for quality of life; Satisfaction With Life Scale). A composite PRO score was calculated. Standard of living was expressed as Gross Domestic Product per capita and Human Development Index. Healthcare systems were operationalized as the total health expenditure per capita and the overall health system performance. Substantial inter-country variation in PROs was observed, with Switzerland having the highest composite PRO score (81.0) and India the lowest (71.3). Functional class, age, and unemployment status were patient-related factors that independently and consistently predicted PROs. Standard of living and healthcare system characteristics predicted PROs above and beyond patient characteristics.ConclusionsThis international collaboration allowed us to determine that PROs in ConHD vary as a function of patient-related factors as well as the countries in which patients live.
5.
Ekman, Nina, et al.
(författare)
A state-of-the-art review of direct observation tools for assessing competency in person-centred care
2020
Ingår i: International Journal of Nursing Studies. - : Elsevier. - 0020-7489 .- 1873-491X. ; 109
Forskningsöversikt (refereegranskat) abstract
BACKGROUND: Direct observation is a common assessment strategy in health education and training, in which trainees are observed and assessed while undertaking authentic patient care and clinical activities. A variety of direct observation tools have been developed for assessing competency in delivering person-centred care (PCC), yet to our knowledge no review of such tools exists.OBJECTIVE: To review and evaluate direct observation tools developed to assess health professionals' competency in delivering PCC.DESIGN: State-of-the-art review DATA SOURCES: Electronic literature searches were conducted in PubMed, ERIC, CINAHL, and Web of Science for English-language articles describing the development and testing of direct observation tools for assessing PCC published until March 2017.REVIEW METHODS: Three authors independently assessed the records for eligibility. Duplicates were removed and articles were excluded that were irrelevant based on title and/or abstract. All remaining articles were read in full text. A data extraction form was developed to cover and extract information about the tools. The articles were examined for any conceptual or theoretical frameworks underlying tool development and coverage of recognized PCC dimensions was evaluated against a standard framework. The psychometric performance of the tools was obtained directly from the original articles.RESULT: 16 tools were identified: five assessed PCC holistically and 11 assessed PCC within specific skill domains. Conceptual/theoretical underpinnings of the tools were generally unclear. Coverage of PCC domains varied markedly between tools. Most tools reported assessments of inter-rater reliability, internal consistency reliability and concurrent validity; however, intra-rater reliability, content and construct validity were rarely reported. Predictive and discriminant validity were not assessed.CONCLUSION: Differences in scope, coverage and content of the tools likely reflect the complexity of PCC and lack of consensus in defining this concept. Although all may serve formative purposes, evidence supporting their use in summative evaluations is limited. Patients were not involved in the development of any tool, which seems intrinsically paradoxical given the aims of PCC. The tools may be useful for providing trainee feedback; however, rigorously tested and patient-derived tools are needed for high-stakes use.
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Saarijärvi, Markus, 1988, et al.
(författare)
Implementation fidelity of a transition program for adolescents with congenital heart disease: the STEPSTONES project
2022
Ingår i: BMC Health Services Research. - : Springer Science and Business Media LLC. - 1472-6963. ; 22
Tidskriftsartikel (refereegranskat) abstract
Background: Although transition programs have been evaluated for adolescents with chronic conditions, these have rarely involved process evaluations. Indeed, outcomes of complex interventions are dependent on how the intervention is implemented in practice and evaluations of implementation process are therefore pivotal. The aim of this study was to evaluate the extent to which a transition program for adolescents with congenital heart disease was delivered as intended. Research questions were 1) to what level of fidelity was the program delivered? and 2) what potential moderating factors affected the delivery of the program and overall fidelity? Methods: A mixed methods design was used, where a process evaluation was embedded in the STEPSTONES randomized controlled trial in Sweden. The implementation fidelity framework by Carrol (2007) and Hasson (2010) was used to design, collect and analyze data. Quantitative data consisted of intervention records on adherence and were analyzed with descriptive statistics. Qualitative data on moderators affecting fidelity were collected through interviews, log-books and focus group interviews with healthcare professionals implementing the intervention and participatory observations of the implementation process. Data were analyzed with deductive content analysis. Triangulation was used to integrate quantitative and qualitative data within the fidelity framework. Results: Six out of eight components of the transition program were delivered to an extent that adhered to the program theory or achieved a high level of fidelity. However, components involving peer support had a low attendance by the participating sample (32.2%), and the joint transfer meeting was challenging to implement, despite achieving high adherence. Moderators affecting the implementation process were the adolescent’s and healthcare professional’s engagement in the intervention, contextual factors and a lack of standard operating procedures for all components in the program. Conclusion: Barriers and facilitators for a future implementation of transition programs have been illuminated in this study. The use of an implementation fidelity framework in the process evaluation proved successful in providing a comprehensive evaluation of factors affecting the implementation process. However, implementation fidelity must be considered in relation to adaptations to the local and personal prerequisites in order to create interventions that can achieve fit.
7.
Moons, Philip, 1968
(författare)
Defining quality of life in congenital heart disease
2015
Ingår i: 18th Annual update on pediatric and congenital cardiovascular disease. February 11-15, 2015, Scottsdale, Arizona, USA.
Konferensbidrag (övrigt vetenskapligt/konstnärligt)
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