| 1. |
- Mäenpää, Sofia, et al.
(författare)
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Patients’ experiences when afflicted by takotsubo syndrome – is it time for guidelines?
- 2021
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Ingår i: Scandinavian Journal of Caring Sciences. - : John Wiley & Sons. - 0283-9318 .- 1471-6712. ; 35:3, s. 824-832
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Tidskriftsartikel (refereegranskat)abstract
- Background: Takotsubo syndrome (TTS) is an acute and reversible type of heart failure that shares common features with acute coronary syndrome. It is usually caused by psychological or physical stress, but for a third, triggers cannot be identified. Patients also suffer from residual symptoms and decreased mental health in the recovery phase and may struggle to comprehend and manage everyday living.Aim: To describe patients' experiences when afflicted by takotsubo syndrome, after discharge from hospital.Method: An inductive explorative design using a qualitative approach with semi-structured individual interviews. The text was analysed using qualitative content analysis according to Graneheim and Lundman.Result: Ten women and one man afflicted by TTS were interviewed two to twelve months after discharge. Six sub-categories were identified, and a main category emerged: The process from symptom onset and understanding to increased awareness and changes in life. The patients suffered from emotional reactions and they sought answers and understanding about the underlying causes. The disease led to changes in patients' daily lives as they were affected physically and psychologically. Spouses and/or bystanders had a positive supporting role, but the patients desired more support from the healthcare professionals such as an earlier appointment for follow-up with a nurse.Conclusion: Being afflicted by TTS can lead to changes in life conditions but these changes vary among patients. Becoming ill was associated to acute physical stress and prolonged psychological stress and they suffered from emotional reactions. The follow-up care needs to improve as the patients need more guidance from healthcare professionals and earlier appointment for follow-up with a nurse. A structured and multiprofessional treatment with a person-centred approach could support patients in their recovery.
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| 2. |
- Bergerum, Carolina, 1967-
(författare)
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Patient and public involvement in hospital quality improvement interventions : the mechanisms, monitoring and management
- 2022
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- This dissertation focuses on the mechanisms, monitoring and management of patient and public involvement in hospital quality improvement (QI) interventions. Findings from a literature review generated an initial programme theory (PT) on active patient involvement in healthcare QI interventions (Paper 1). Empirical studies were also undertaken in order to describe what was actually happening in the hospital QI teams and what patients and professionals experience influence their joint involvement (Paper 2), and to compare hospital leaders’ and managers’ experiences of managing QI interventions involving patients and the public (Paper 3). Finally, it was studied how patient-reported measures stimulate patient involvement in QI interventions in practice (Paper 4). The research had a qualitative design. The approach was descriptive and comparative, and the studies were carried out prospectively. Data were collected in two hospital organisations in Sweden and in one hospital organisation in the Netherlands. Data collection methods were a literature search (Paper 1), interviews and field observations (Paper 2 and 3) and data collection meetings (Paper 4). Altogether, 93 team meetings and meetings between the team leaders and management were attended and a total of 20 days of study visits with different forms of meetings were made. Twelve patients, 12 healthcare professionals and 17 and 8 hospital leaders and managers, respectively, participated in the interviews and data collection meetings. Realist synthesis was used to formulate the initial PT (Paper 1). Constructivist grounded theory was used to analyse and describe what was happening in the QI teams and how it was experienced by the team members (Paper 2). To compare hospital leaders’ and managers’ different, contextual meanings in Sweden and the Netherlands, the reflexive thematic analysis informed by critical realism was used (Paper 3). To order, manage and map data from 31 examples of local QI interventions associated to patient-reported measures, the framework method was used (Paper 4). The results formulate a generic PT on the mechanisms, monitoring and management perspectives of co-produced QI interventions in hospital services where patients and the public are involved. The PT provides a hypothesis on the various mechanisms at play and outcomes obtained at the different levels of hospital organisations in the process. It is argued that focus should be on experiences, interaction, relationships and dialogue, integration of context, and the matching of hospital resources to patient and public demands and needs. Subsequently, the outcome will be the resources and reasoning interplay resulting in actions and processes, experiences and knowledge, ‘product’ benefits, emotions, judgements and motivations. Monitoring constitutes an important feedback loop to enable such learnings. The PT aligns the perspectives of the clinical microsystem, improvement science and the service-dominant logic, and has a potential to explain how patient and public involvement in QI interventions might work.
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| 3. |
- Bergerum, Carolina, et al.
(författare)
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'We are data rich but information poor' : how do patient-reported measures stimulate patient involvement in quality improvement interventions in Swedish hospital departments?
- 2022
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Ingår i: BMJ Open Quality. - : BMJ Publishing Group Ltd. - 2399-6641. ; 11:3
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Tidskriftsartikel (refereegranskat)abstract
- ObjectiveThis study aimed to investigate if and how patient-reported measures from national and local monitoring stimulate patient involvement in hospital quality improvement (QI) interventions. We were also interested in the factors that influence the level and degree of patient involvement in the QI interventions.MethodsThe study used a qualitative, descriptive design. Inspired by the Framework Method, we created a working analytical framework. Four hospital departments participated in the data collection. Collaborating with a QI leader from each department, we identified the monitoring systems for the patient-reported measures that were used to initiate or evaluate QI interventions. Thereafter, the level and degree of patient involvement and the factors that influenced this involvement were analysed for all QI interventions. Data were mapped in an Excel spreadsheet to analyse connections and differences.ResultsDepartments used patient-reported measures from both national and local monitoring systems to initiate or evaluate their QI interventions. Thirty-one QI interventions were identified and analysed. These interventions were mainly conducted at the direct care and organisational levels. By participating in questionnaires, patients were involved to the degree of consultation. Patients were not involved to the degree of partnership and shared leadership for the identified QI interventions.ConclusionsOverall, hospital departments have limited knowledge regarding patient-reported measures and how they are best applied in QI interventions and how they support improvements. Applying patient-reported measures to hospital QI interventions does not enhance patient involvement beyond the degree of consultation.
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| 4. |
- Chaplin, John, et al.
(författare)
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Initial validation of Swedish PROMIS (R)-25 in an orthopaedic population of children with acute severe knee injury
- 2018
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Ingår i: Quality of Life Research. - : Springer. - 0962-9343 .- 1573-2649. ; 27:Suppl. 1, s. S122-S122
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Tidskriftsartikel (refereegranskat)abstract
- Aims: The quality control of pediatric orthopaedic treatment options requires patient reported outcome measures that offer comparison to referenced populations. This study aimed to contribute to the validation of the Swedish translation of the norm-referenced PROMIS profile-25.Methods: Three questionnaires were administered one year after an acute knee injury via the Swedish paediatric orthopaedic registry (SPOQ). The questionnaires were: (1) The PROMIS Pediatric Profile-25, including the short-forms Mobility, Anxiety, Depression, Fatigue, Peer Relationships, Pain Interference and the single-item Pain Intensity, translated following the FACIT translation method, (2) the Knee Injury and Osteoarthritis Outcome scales for children (KOOS-Child, previously validated in Swedish) with the scales Pain, Symptoms, ADL, Sport/play and QoL (39 questions), and (3) a single VAS item, Overall Health Scale. Convergent validity was assessed by interscale correlations and a one-way ANOVA was used to identify differences between three injury categories.Results: Of 218 eligible patients, 104 (53 girls, 9-14 years, mean 13 years, 42 with patella luxation, 34 with anterior cruciate ligament rupture and 28 with other knee injuries), returned questionnaires. PROMIS and KOOS-Child had 1% incomplete answers. There was high positive correlation between all KOOS-Child scales, and KOOS-Child-Pain explained a large amount of variance in Symptoms (R2 = .610), ADL (R2 = .648), Sport/play (R2 = .462) and QoL (R2 = .423). An expected high correlation between KOOS-Child-pain and PROMIS-Pain-Interference was found (r = .581, p = \.001). The expected relationship between the PROMIS-Mobility scale and KOOS-Child-QoL (r = .815, p = \.001) was found, confirming that at this age QoL is associated with physical functioning. There were statistically significant differences between the three diagnosis categories for two PROMIS scales: PROMIS-mobility (F(2, 101) = 6.901, p = .002) and PROMIS-depression (F(2, 101) = 3.116, p = .049). The PROMIS subscales showed high Cronbach’s alpha (between 0.730 and 0.864).Conclusions: This study is the first in Sweden to investigate the psychometric properties of the PROMIS profile-25 and highlights its relationship to the criterion measure of KOOS-Child. PROMIS-25 uses self-report, ultra-brief measurement for screening, providing additional information that was not available using previous questionnaires. PROMIS-25 can contribute to quality control and lead to improved treatment decisions. Data collection is ongoing through the orthopaedic registry, which will provide further evidence of how PROMIS-25 performs in other paediatric orthopaedic conditions.
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| 5. |
- Darcy, Laura, et al.
(författare)
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Health and functioning in the everyday lives of young children with cancer : documenting with the International Classification of Functioning, Disability and Health – Children and Youth (ICF-CY)
- 2014
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Ingår i: Child Care Health and Development. - : Wiley-Blackwell Publishing Ltd.. - 0305-1862 .- 1365-2214.
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Tidskriftsartikel (refereegranskat)abstract
- Background Health care focus is shifting for children from surviving childhood cancer to living with it on a daily basis. There is a need to document health and function in the everyday lives of young children with cancer using the multidimensional framework and language of the International Classification of Functioning, Disability and Health – Children and Youth (ICF-CY). Aims The aims of this study were (1) to document health and functioning in the everyday lives of young children with cancer using ICF-CY codes and (2) to identify a comprehensive code set that can aid clinical assessment. Method Interviews with children diagnosed with cancer and their parents, were transcribed, reviewed for content and coded to the ICF-CY using linking procedures. Results A comprehensive code set (n = 70) for childhood cancer was identified. The majority of content identified to codes was related to activity and participation describing social relations with family, peers and professionals, preschool attendance and play, as well as issues related to support and independence. Conclusions The ICF-CY can be used to document the nature and range of characteristics and consequences of cancer experienced by children. The identified comprehensive code set could be helpful to health care professionals, parents and teachers in assessing and supporting young children’s health and everyday life through the cancer trajectory. The comprehensive code set could be developed as a clinical assessment tool for those caring for young children with cancer. The universal language of the ICF-CY means that the utility of a clinical assessment tool based on identified codes can have wide reaching effects for the care of young children with cancer.
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| 6. |
- Hedberg, Berith, 1951-, et al.
(författare)
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Shared decision-making and person-centred care in Sweden : Exploring coproduction of health and social care services
- 2022
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Ingår i: Zeitschrift fur Evidenz, Fortbildung und Qualitat im Gesundheitswesen. - : Elsevier. - 1865-9217 .- 2212-0289. ; 171, s. 129-134
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Tidskriftsartikel (refereegranskat)abstract
- In Sweden the health system is nationally regulated and locally provided by 21 regions and 290 municipalities. To meet the shifting paradigm, where the person is viewed as a co-producer of health and care, Sweden has laws, regulations and policies which support the patient as an active partner in the communication with professionals in the system. Coproduction, person-centred care and shared decision making contribute jointly to the paradigm shift. Principles of human dignity and equity must be supported nationally and enacted in the decentralized, regional provision of care. Infrastructures exist or are under development which can support and strengthen care that is co-produced and based in a person-centred philosophy and approach, where shared decision making becomes a reality in practice. A Knowledge management system together with National Quality registries have the potential to form a co-produced, person-centred learning health system, where patients, and next of kin and professionals are included as partners. The joint integration of Shared decision making, Person-centre care and Coproduction into the Swedish healthcare system now looks like a possible way to realize the emerging paradigm.
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| 7. |
- Jarl, Frida, et al.
(författare)
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Overcoming the struggle of living with type 2 diabetes : diabetes specialist nurses' and patients' perspectives on digital interventions
- 2023
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Ingår i: BMC Health Services Research. - : BioMed Central (BMC). - 1472-6963. ; 23:1
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Diabetes self-management education and support (DSMES) is a cornerstone in the treatment of type 2 diabetes mellitus (T2DM). It is unclear whether delivering DSMES as a digital health intervention (DHI) might meet the needs experienced by patients with T2DM and diabetes specialist nurses (DSN) of the primary health care system in Sweden. METHODS: Fourteen patients with T2DM and four DSN participated in three separate focus groups: two groups comprised patients and one group comprised DSN. The patients discussed the questions: "What needs did you experience after your T2DM diagnosis?" and "How might these needs be met with a DHI?" The DSN discussed the questions: "What needs do you experience when treating a patient with newly diagnosed T2DM?" and "How might these needs be met with a DHI?". Furthermore, data were collected in the form of field notes from group discussions at a meeting including 18 DSNs working with T2DM in PHCCs. The discussions from focus groups were transcribed verbatim and analyzed together with the field notes from the meeting using inductive content analysis. RESULTS: The analysis yielded the overall theme: "Overcoming the struggle of living with T2DM", which was summarized in two categories: "learning and being prepared" and "giving and receiving support". Important findings were that, for success, a DHI for DSMES must be integrated into routine care, provide structured, high-quality information, suggest tasks to stimulate behavioral changes, and provide feedback from the DSN to the patient. CONCLUSION: This study highlighted several important aspects, from the perspectives of both the patient with T2DM and the DSN, which should be taken into consideration for the successful development and use of a DHI for DSMES.
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| 8. |
- Koldestam, Maria, 1968-, et al.
(författare)
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Model for Improvements in Learning Outcomes (MILO) : Development of a conceptual model grounded in caritative caring aimed to facilitate undergraduate nursing students’ learning during clinical practice (Part 1)
- 2021
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Ingår i: Nurse Education in Practice. - : Elsevier. - 1471-5953 .- 1873-5223. ; 55
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Tidskriftsartikel (refereegranskat)abstract
- Aim: The aim was to describe the development of a caritative caring conceptual model aimed to facilitate undergraduate nursing students’ learning during clinical practice. Design: An explorative design was used.Methods: The Delphi method with a panel of 12 experts together with a literature search with a systematic approach were used and data were analysed according to content analysis.Results: The Model for Improvements in Learning Outcomes (MILO) consists of eight core concepts divided into four intrapersonal concepts (nursing, a reflective approach, a critical approach, quality and safety) and four contextual concepts (peer learning, co-clinical teachers, student-centred and student-active supervision, a good learning environment). MILO is grounded in the theory of caritative caring with a hermeneutic approach and the understanding of caring and learning as parallel processes. Tools such as reflection, structure and guiding pm are used to intertwine caring, nursing, pathophysiology and medicine.Conclusions: MILO intertwines didactics with concepts important for nursing students’ learning with a foundation in caritative caring and may facilitate undergraduate nursing students’ learning in clinical practice.
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| 9. |
- Lindblad, Anna, et al.
(författare)
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"An expanded window of understanding a changed everyday life"—Experiences from patients with long-term conditions after attending group learning sessions
- 2020
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Ingår i: Journal of Patient Experience. - : Sage Publications. - 2374-3735 .- 2374-3743. ; 7:6, s. 1022-1028
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Tidskriftsartikel (refereegranskat)abstract
- Objective: Health education programs using group learning sessions for patients with long-term conditions have been tested, but not evaluated. In order to evaluate such sessions, the purpose was to explore experiences from patients with long-term conditions after participating in group learning sessions.Methods: A descriptive design based on qualitative content analysis was used. Interviews were conducted with 19 patients with different long-term conditions, and participants were asked about their experiences after taking part in the group learning sessions.Results: Sharing experiences with one another gave them opportunities for learning. Patients described a metaphorical "expanded window," which opens in the group learning sessions; comparable to encounters during regular visits to health care providers. The nature of the learning environment that follows the educational model, together with describing lived experiences, allowed patients to share capability and resources, which was found to be foundational.Conclusions: The health education program as a format was important for shared learning. The facilitator can support the learning by structuring the format, but most essential was sharing experiences that facilitated each patient's learning that can aid the support of individual self-management.
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| 10. |
- Määttä, Sylvia, et al.
(författare)
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Experiences of co-producing person-centred and cohesive clinical pathways in the national system for knowledge-based management in Swedish healthcare : a qualitative study
- 2024
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Ingår i: Research Involvement and Engagement. - : BioMed Central (BMC). - 2056-7529. ; 10
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: When the 21 Swedish county councils decided to collaborate in the creation of a national system for knowledge-based management, patient participation was mandatory. Patient and next-of-kin representatives (PR) co-produced person-centred and cohesive clinical pathways together with healthcare professionals (HPR). Research on co-production in healthcare at the national level is scarce. The aim of this study is to explore experiences of patient participation from the perspectives of both PRs and HPRs when co-producing clinical pathways within the Swedish nationwide healthcare system for knowledge-based management.METHODS: A qualitative study was conducted. A strategic sample of nine PRs and eight HPRs were interviewed individually between August 2022 and January 2023 using a semi-structured interview guide. We analysed data using an inductive content analysis.RESULTS: Three main categories were identified: (1) Finding appropriate patient representativeness; (2) Working methods that facilitate a patient perspective; and (3) Influence of the patient perspective in the clinical pathways.CONCLUSIONS: The study demonstrates the importance of patient and next-of-kin participation in the construction of clinical pathways at the national level. The results provide a platform for further research on patient participation on the national level and add to studies on if and how patient participation on this level has an impact on how the clinical pathways are put into practice at the micro level, and the support provided at the meso level. The study contributes to the growing body of literature studying patient participation and co-production.TRIAL REGISTRATION: Region Örebro County ID 276,940. An advisory opinion was obtained from the Swedish Ethical Review Authority (2021-05899-01).
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