| 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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| 11. |
- Petersson, Christina, 1975-
(författare)
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Att förbereda barn inför undersökning
- 2021. - 1
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Ingår i: Distriktssköterskans specialistområden. - Lund : Studentlitteratur AB. - 9789144130576 ; , s. 97-102
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Bokkapitel (övrigt vetenskapligt/konstnärligt)
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| 12. |
- Petersson, Christina, 1975-, et al.
(författare)
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Discovering aspects of health-experiences of a web-based health diary among adults with primary immunodeficiency
- 2018
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Ingår i: Nursing Open. - : John Wiley & Sons. - 2054-1058. ; 5:4, s. 642-648
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Tidskriftsartikel (refereegranskat)abstract
- Aim: Advances in technology generate new opportunities to develop e-health tools to help individuals in self-management by assessing symptoms of illness and its relation to treatments. Self-management is central when living with primary immunodeficiency diseases. The aim was to explore the experiences of people living with primary immunodeficiency, who used a pilot version of the web-based health diary.Design: Explorative design.Methods: In total, 16 participants (median age 59) attended one of three focus groups. Inductive content analysis was used.Results: The participants could be encouraged to discover aspects of their health by contributing to documentation which could support the health concept. A greater understanding about their own health and communicating with healthcare professionals during encounters was expressed. The web-based health diary is a helpful tool to discover aspects of health that affects the individuals’ life situation and assists the self-management of a long-term condition such as immunodeficiency.
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| 13. |
- Petersson, Christina, 1975-, et al.
(författare)
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"Experiences of the burden of treatment" - patient-reports of facilitated subcutaneous immunoglobulin treatment in adults with immunodeficiency.
- 2018
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Ingår i: Journal of Clinical Nursing. - : John Wiley & Sons. - 0962-1067 .- 1365-2702. ; 27:23-24, s. 4270-4278
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Tidskriftsartikel (refereegranskat)abstract
- AIMS AND OBJECTIVES: To evaluate patient-reported experiences of facilitated subcutaneous immunoglobulin treatment in adults with primary or secondary immunodeficiency.BACKGROUND: Decreased levels of circulating antibodies (humoral immunodeficiency) are often associated with higher infection rates which cause problems in daily living, for example symptoms of severe and recurrent bacterial infections that may cause chronic lung diseases. For some diagnoses, treatment with immunoglobulin becomes critical and life-long. The acceptability of administration forms is important to achieve adherence to treatment, and to increase quality of life for these patients.DESIGN: Convergent mixed method approach.METHODS: A structured telephone interview with nine questions evaluated on a score scale about treatment experience, satisfaction, and ancillary supplies was used, followed by open-ended questions for each item.RESULTS: Prohibiting factors were revealed, exemplified by problems due to technical issues and ancillary supply issues. Promoting factors was shown by high a satisfaction when combining treatment with daily life as well as increased wellbeing. Facilitated subcutaneous immunoglobulin treatment led to fewer treatment sessions, with a time-saving aspect also described by high scores in the item concerning longer treatment interval.CONCLUSIONS: The opportunity to be given the best possible treatment plan adjusted for each patients' situation is central. Healthcare professionals should discuss the different aspects that can promote and inhibit the outcomes of treatment.RELEVANCE TO CLINICAL PRACTICE: The results can help professionals to understand different factors that may impinge on the patients' everyday life when they are forced into a lifelong treatment regimen. This knowledge is also important for nurses who have a responsibility to promote health concerning patients with long-term conditions in general. This article is protected by copyright. All rights reserved.
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| 14. |
- Petersson, Christina, 1975-, et al.
(författare)
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Exploring the meaning of coproduction as described by patients after spinal surgery interventions
- 2019
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Ingår i: Open Nursing Journal. - : Bentham Open. - 1874-4346. ; 13, s. 85-91
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Tidskriftsartikel (refereegranskat)abstract
- Background:In the procedures of surgical pathways it is important to create opportunities for developing active forms of engagement and extending the patients’ health maintenance knowledge, which is essential in nursing. One way is to understand more about the concept of coproduction.Objective:The purpose was to use experiences from spinal surgery patients’ narratives to explore the conceptual model of healthcare service coproduction.Method:A prospective qualitative explorative approach was performed and analyzed in two phases with inductive and deductive content analysis of data retrieved from five focus group interviews of 25 patients with experiences from spinal surgery interventions.Result:The findings indicate that mutual trust and respect, as well as guidance given in dialogue, are two important domains. An illustration of how to apply the conceptual model of healthcare service coproduction was revealed in the descriptions of the three core concepts co-planning, co-execution and civil discourse.Conclusion:This study highlights what is needed to reach coproduction in healthcare services concerning patients with spinal disorders. Development of care plans that focuses on co-planning and co-execution is recommended which are structured and customizable for each patient situation to make coproduction to occur.
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| 15. |
- Petersson, Christina, 1975-, et al.
(författare)
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Läkemedel och förskrivning
- 2021. - 1
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Ingår i: Distriktssköterskans specialistområden. - Lund : Studentlitteratur AB. - 9789144130576 ; , s. 61-74
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Bokkapitel (övrigt vetenskapligt/konstnärligt)
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| 16. |
- Petersson, Christina, 1975-, et al.
(författare)
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To support self-management for people with long-term conditions : The effect on shared decision-making, empowerment and coping after participating in group-learning sessions
- 2022
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Ingår i: Nursing Open. - : John Wiley & Sons. - 2054-1058. ; 9:5, s. 2444-2453
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: Interventions that support patients to handle the emotional and medical aspects of a long-term health condition is important. One way is to use peer-support groups, to help patients solving problems, increasing their knowledge and making decisions.Aim: was to investigate the impact on shared decision-making, empowerment and coping after participation in group-learning sessions for patients with long-term conditions (N = 42).Design: An intervention following a health education programme based on group-learning sessions was established. Eight different programmes were held in five different departments at a regional county hospital in Sweden.Methods: Questionnaires were analysed using paired-sample t-test.Results: Results showed that patients might have better opportunities to be more active during their patient encounter after attending the group learning sessions. Interventions directed to patient activation may be one key in future healthcare management, especially concerning long-term conditions. Empowering patients is central in healthcare, and using different approaches is important.What does this paper contribute to the wider global clinical community? Patients with long-term conditions should be encouraged to share their knowledge to others, which can give support in managing their diseaseGroup-learning sessions can add a perspective of patients' lived knowledge which is one of the key aspects concerning treatment of patients with long-term conditions
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| 17. |
- Petersson, Christina, 1975-, et al.
(författare)
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Use of the national quality registry to monitor health-related quality of life of children with type 1 diabetes : A pilot study
- 2015
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Ingår i: Journal of Child Health Care. - : Sage Publications. - 1367-4935 .- 1741-2889. ; 19:1, s. 30-42
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Tidskriftsartikel (refereegranskat)abstract
- The management of diabetes is complicated, as treatment affects the everyday life of both children and their families. To enable optimal care for children with type 1 diabetes, it is important to highlight health-related quality of life (HrQoL) as well as medical outcomes to detect psychological problems that otherwise could be missed. The aim was to study HrQoL in children and adolescents with type 1 diabetes dependent on gender, age and co-morbidity and to study the consistency between children’s self-reporting and parents’ proxy reporting. The cross-sectional data were collected using the questionnaire DISABKIDS Chronic Generic Measure and the DISABKIDS diabetes module. Parents in the proxy report perceived their children’s HrQoL to be lower than children themselves. Boys reported their HrQoL to be better than girls. Results show that living with an additional disease has an impact on the HrQoL, which is an important factor to consider in the quality registry. Assessing HrQoL on a routine basis may facilitate detection and discussion of HrQoL-related questions in the national quality registry.
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| 18. |
- Ramfelt, Kerstin, et al.
(författare)
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Experiences From a Coaching Program for Parents of Children and Adolescents With Type 1 Diabetes Developed Through Experienced-Based Co-Design (EBCD)
- 2020
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Ingår i: Journal of Patient Experience. - : Sage Publications. - 2374-3735 .- 2374-3743. ; 7:6, s. 1181-1188
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Tidskriftsartikel (refereegranskat)abstract
- Many children and adolescents with type 1 diabetes (T1D) have difficulties reaching the national treatment goal for HbA1c (long-term blood sugar) which is associated with increased risk for complications. This makes it important to explore what patients and their caregivers describe important in coping with everyday life. The study has been conducted within a pediatric diabetes team in the south of Sweden. The aim was to explore how Experienced-Based Co-Design (EBCD) can be used to identify, test, and evaluate improvement efforts in order to support the family with a child with T1D. A modified variant of EBCD based on focus groups, workshops, and interviews with stakeholders was used. The improvement proposal parental coaching was tested and was appreciated by the participants. The qualitative content analysis of the interviews showed that the coaching program contributed to better confidence and self-efficacy. Both coaches and coachees described that the coaching contributed to better competence and a feeling of hope after attending the coach program. Experienced-Based Co-Design gave an opportunity to explore what?s important to improve, based on experiences and needs of several stakeholders.
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| 19. |
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| 20. |
- Svensson, J., et al.
(författare)
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The DISABKIDS generic and diabetes-specific modules are valid but not directly comparable between Denmark, Sweden, and Norway
- 2020
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Ingår i: Pediatric Diabetes. - : John Wiley & Sons. - 1399-543X .- 1399-5448. ; 21:5, s. 900-908
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Tidskriftsartikel (refereegranskat)abstract
- Background/Objectives: Government guidance promote benchmarking comparing quality of care including both clinical values and patient reported outcome measures in young persons with type 1 diabetes. The aim was to test if the Nordic DISABKIDS health-related quality of life (HrQoL) modules were construct valid and measurement comparable within the three Nordic countries. Methods: Data from three DISABKIDS validation studies in Sweden, Denmark, and Norway were compared using Rasch and the graphical log-linear Rasch modeling. Monte Carlo methods were used to estimate reliability coefficient and target was defined as the point with the lowest SE of the mean. Self-report data were available from 99 Danish (8-18 years), 103 Norwegian (7-19 years), and 131 Swedish (8-18 years) young people. Results: For the DISABKIDS higher scores on most subscales were noted in the Norwegian population. The Swedish sample had a significantly higher score on the “Diabetes treatment” subscale and scores closer to optimal target than the other countries. For each country, construct validity and sensitivity were acceptable when accounting for differential item function (DIF) and local dependency (LD). Less LD and DIF were found if only Denmark and Norway were included. The combined model was reliable; however, some differences were noted in the scale translations relating to the stem and response alternatives, which could explain the discrepancies. Conclusion: The Nordic versions of the DISABKIDS questionnaires measures valid and reliable HrQoL both within and between countries when adjusted for DIF and LD. Adjusting the Likert scales to the same respond categories may improve comparability.
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| 21. |
- Wallin, Pontus, et al.
(författare)
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Enhancing staff capacity to support children with intellectual disability receiving residential services : A realist evaluation of an improvement program
- 2023
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Ingår i: Journal of Policy and Practice in Intellectual Disabilities. - : Wiley. - 1741-1122 .- 1741-1130.
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Tidskriftsartikel (refereegranskat)abstract
- Children with intellectual disability receiving residential support, according to the Swedish Disability Act, need substantial support to cope with everyday life.These children have cognitive and communicative limitations, entailing difficulties for staff in consulting the children regarding their support arrangements. In addition, due to lack of research there are knowledge gaps and uncertainties concerning how staff can provide the children's support. To deliver high qualitative support, research suggests that disability organisations should (1) continuously work with quality improvement, (2) adopt a multidimensional framework that explains human functioning and disability as a basis for understanding individual support needs, and (3) use person-centred approaches. Based on these principles, this study has applied a realist evaluation to identify enablers and barriers during the implementation of an improvement programme aimed at improving staff's ability to provide support to children living in special residences
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| 22. |
- Wallin, Pontus, et al.
(författare)
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Exploring Co-production in Residences with Special Services for Children and Adolescents with Intellectual Disability in Sweden
- 2021
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Ingår i: Scandinavian Journal of Disability Research. - : Stockholm University Press. - 1501-7419 .- 1745-3011. ; 23:1, s. 247-259
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Tidskriftsartikel (refereegranskat)abstract
- In Sweden, children and adolescents with intellectual disability in special residences often have complex support needs. In this study, co-production refers to when and how staff in special residences, and children and adolescents living there, interact to promote support that enhances their participation in everyday life according to their desires and needs. The study explores staff experiences of the conditions for co-producing individual support at LSS residences for children and adolescents with intellectual disability. Qualitative content analysis was used to analyze focus group interviews with staff in LSS residences. The analysis identified three generic categories: establishment of a structured context, continuous individual support development, and influencing factors for co-production. A key finding derived from the generic categories was that the conditions for co-produced support are impeded by communication barriers between staff and children/adolescents. Practical implications and future research are discussed.
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