| 1. |
- Möllerberg, Marie-Louise, et al.
(författare)
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Managing an altered social context-Patients experiences of staying away from home while undergoing proton beam therapy
- 2020
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Ingår i: Nursing Open. - : John Wiley & Sons. - 2054-1058. ; 7:4, s. 1157-1163
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Tidskriftsartikel (refereegranskat)abstract
- Aim: To illuminate the experience of an altered social context for patients with primary brain tumours living away from home while undergoing proton beam therapy.Design: A descriptive, qualitative cross-sectional interview study.Methods: Nineteen patients were interviewed between December 2015-August 2016, either during (N = 7) or before and after (N = 12) their proton beam therapy. A hermeneutical analysis was performed.Results: Participants made adjustments to achieve control and well-being during the treatment period. The analysis also revealed two interrelated patterns that helped participants adjust: being part of the family from a distance and seeking affinity.Conclusion: It is important that patients receiving treatment far from home find a way to remain a part of their family and find affinity in the altered social context. Health professionals can prepare patients for the treatment period and can implement interventions to promote well-being for both patients and their relatives.
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| 2. |
- Johansson, Magnus, et al.
(författare)
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Valid and Reliable? : Basic and Expanded Recommendations for Psychometric Reporting and Quality Assessment
- 2023
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Annan publikation (övrigt vetenskapligt/konstnärligt)abstract
- There is a need to improve the validity, reliability, and replicability of social and health science research and its applications through raising the quality of measurement. An important step is to establish and implement a clear and useful guideline for reporting and assessing psychometric properties of measures. We propose five basic criteria as a minimal checklist to help end users assess the quality of psychometric studies: unidimensionality; ordered response categories, invariance; targeting; and, contingent upon the previous four being fulfilled, reliability. An expanded and detailed reporting guideline is also presented, intended for use in reports and scientific publications of psychometric analyses. We argue that reliability should be reported using a Test Information Function curve, which describes the properties of the items, rather than a point estimate describing sample properties. Additionally, we present a freely available R package to streamline psychometric analysis with Rasch Measurement Theory and its documentation in line with the reporting guideline.
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| 3. |
- Melin, Jeanette, et al.
(författare)
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A sustainable organization for measurement quality assurance of category based measurements : Tasked with coordinating and ensuring reliable and comparable measurements of experiences, feelings, behaviours and abilities
- 2023
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Rapport (övrigt vetenskapligt/konstnärligt)abstract
- Why?Society's need for knowledge about experiences, feelings, behaviours and abilities is increasing. It is important to know how people and society feel or how a product or service is perceived, and to be able to compare how these change over time and between different areas, for example when making decisions about priorities, efforts and effects. In order for measurements of experiences, feelings, behaviours and abilities to be useful and provide reliable data, quality-assured measurement is required for socalled category based measurements1. It is therefore necessary that basic measurement principles are applied, which is often not the case today in this field. For the physical quantities (length, mass, time, etc.) there has long been an internationally established measurement quality infrastructure. In Sweden, it is mainly RISE as the National Metrological Institute which, through its national measurement sites, is responsible for ensuring access to quality-assured and traceable measurements for society. However, the corresponding measurement quality infrastructure is so far missing for category based measurements.What?RISE has been working for several years to develop methodology and working methods for measurement quality assurance of experiences, feelings, behaviours and abilities. Through dialogue over several years with actors at various levels, including in health care and academia, it has emerged that there is a great need for support for this development. RISE has therefore produced a first draft of a possible sustainable organization for measurement quality assurance of category based measurements. A national centre for quality assurance of category based measurements would be tasked with coordinating and ensuring reliable and comparable measurements of experiences, feelings, behaviours and abilities. Such infrastructural support must make methodologies available to enable quality assurance for category based measurements. The organization must meet society's need for support by offering services based on internationally accepted metrological principles and scientific methods, as well as adopting a neutral and independent role.How?We have humility about the fact that it is a long process to establish an organization for category based measurements and that it needs to happen through a dynamic and iterative development in co-creation with the actors involved. We look forward to continuing to develop ideas and revise the proposal in dialogue in the coming years. It is also important to start a dialogue together with relevant actors about how the implementation of the organization can take place in the future.
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| 4. |
- Melin, Jeanette, et al.
(författare)
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En hållbar organisering för mätkvalitetssäkring av kategoribaserade mätningar : Med uppdrag att samordna och säkerställa tillförlitliga och jämförbara mätningar av upplevelser, känslor, beteenden och förmågor
- 2023
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Rapport (övrigt vetenskapligt/konstnärligt)abstract
- Varför?Samhällets behov av kunskap om upplevelser, känslor, beteenden och förmågor ökar. Det är viktigt att veta hur personer och samhället mår eller hur en produkt eller tjänst upplevs samt att kunna jämföra hur detta förändras över tid och mellan olika områden, för att exempelvis fatta beslut om prioriteringar, insatser och effekter. För att mätningar av upplevelser, känslor, beteenden och förmågor ska vara användbara och ge tillförlitliga underlag krävs kvalitetssäkrad mätteknik för s.k. kategoribaserade mätningar. Det är alltså nödvändigt att grundläggande mättekniska principer tillämpas, vilket ofta inte är fallet i dag inom detta område. För de fysikaliska storheterna (längd, massa, tid etc.) finns sedan länge en internationellt etablerad mätkvalitetsinfrastruktur. I Sverige är det huvudsakligen RISE som Nationellt Metrologiskt Institut som genom sina riksmätplatser ansvarar för att säkerställa tillgång till kvalitetssäkrade och spårbara mätningar för samhället. Motsvarande mätkvalitetsinfrastruktur saknas dock för kategoribaserade mätningar.Vad?RISE arbetar sedan flera år för att utveckla metoder och arbetssätt för mätkvalitetssäkring av upplevelser, känslor, beteenden och förmågor. Genom dialoger med aktörer på olika nivåer, bland annat inom hälso- och sjukvården och akademin, som pågått under flera års tid har det framkommit att det finns ett stort behov av stöd för denna utveckling. RISE har därför tagit fram ett första utkast för en möjlig hållbar organisering för mätkvalitetssäkring av kategoribaserade mätningar. Ett nationellt centrum för mätkvalitetssäkring av kategoribaserade mätningar skulle ha i uppdrag att samordna och säkerställa tillförlitliga och jämförbara mätningar av upplevelser, känslor, beteenden och förmågor. Ett sådant infrastrukturellt stöd ska tillgängliggöra metodiker för att möjliggöra mätkvalitetssäkring för kategoribaserade mätningar. Organiseringen ska möta samhällets behov av stöd genom att erbjuda tjänster baserade på internationellt vedertagna mättekniska principer och vetenskapliga metoder samt ha en neutral och oberoende roll.Hur?Det finns en stor ödmjukhet kring att det är en lång process att etablera en organisering för kategoribaserade mätningar och att det behöver ske genom en dynamisk och iterativ utveckling i samskapande med berörda aktörer. Vi ser fram emot att fortsätta utveckla tankar och revidera förslaget i dialog under kommande år. Det är också viktigt att påbörja en dialog tillsammans med relevanta aktörer om hur implementeringen av organiseringen kan ske i framtiden.
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| 5. |
- Molnar, Stefan, et al.
(författare)
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Upplevelser och beteenden vid Haninge entré : En före-efter-studie av hur boende och besökare använde sig av och upplevde Haninge entré inför upprättandet av en affärs- och medborgarplats där våren 2022 samt ett år senare
- 2023
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Rapport (övrigt vetenskapligt/konstnärligt)abstract
- Centrum för AMP är ett centrum för platsutveckling med uppdrag att skapa livliga, trevliga och trygga offentliga miljöer i Sverige tillgängliga för alla. Detta sker genom platsutvecklings modellen Aff ärs och medborgarplats (AMP modellen) med bakgrund i den nu avslutade Trygghetskommissionens arbete. AMP modellen går ut på att Centrum för AMP på en avgränsad plats och tillsammans med lokala aktörer upprättar en lokal platsorganisation med anställd personal som året om arbetar med gestaltning och etablering, aktiv eringar , aktiviteter och evenemang. En affärs och medborgarplats (AMP) är med andra ord den yta som Centrum för AMP har mandat att ta hand om och utveckla över tid, detta genom ett avtals baserat partnerskap med kommun och lokala fastighetsägare. Begreppet affärs och medborgarplats följer av att arbetet ska ske tillsammans med såväl näringsliv (”Affär”) som privatpersoner och deras representanter i civilsamhälle och offent lig sektor (”Medborgare”) och detta via ett plats skapande arbetssätt, så kallad placemaking I AMP modellen ingår också att arbetet ska grunda sig i och följas upp med hjälp av aktuell forskning och vetenskapliga metoder . Detta är varför ett forsknings partnerskap upprättades år 2021 mellan Centrum för AMP och det statliga forsk ningsinstitutet RISE. Under slutet av våren 2022 upprättade Centrum för AMP en affärs och med borgarplats i centrala Haninge vid namn Haninge entré . Som en del av detta har RISE genomfört en studie på Haninge entré med syfte att generera kunskaper om hur besökare upplevde och betedde sig på platsen strax innan det att Cent rum för AMP initierade sina aktiviteter där liksom när den hade varit aktiv i ett år. Mål med studien har varit att generera en förståelse för lämpliga insatser på plat sen, men också att stödja ett mer allmänt organisationellt lärande bland Centrum för AMP och dess partners. Ett annat mål med studien har varit att testa, samt vidareutveckla, Centrum för AMPs mät och uppföljningsmodell som RISE redan hade utvecklat i tidigare projekt.
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| 6. |
- Möllerberg, Marie-Louise, et al.
(författare)
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Adaptation and psychometric evaluation of the short version of Family Sense of Coherence Scale in a sample of persons with cancer in the palliative stage and their family members
- 2020
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Ingår i: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 18:1, s. 24-32
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Tidskriftsartikel (refereegranskat)abstract
- Objectives For patients' entire families, it can be challenging to live with cancer during the palliative stage. However, a sense of coherence buffers stress and could help health professionals identify families that require support. Therefore, the short version of the Family Sense of Coherence Scale (FSOC-S) was translated, culturally adapted, and validated in a Swedish sample. Methods Translation and cross-cultural adaptation of the FSOC-S into Swedish was conducted in accordance with the World Health Organization's Process for Translation and Adaptation of Research Instruments guidelines. Participants were recruited from two oncology clinics and two palliative centers in Sweden. Results Content validity was supported by experts (n = 7), persons with cancer (n = 179), and family members (n = 165). Homogeneity among items was satisfactory for persons with cancer and family members (item-total correlations were 0.45-0.70 and 0.55-0.72, respectively) as well as internal consistency (ordinal alpha = 0.91 and 0.91, respectively). Factor analyses supported unidimensionality. FSOC-S correlated (r(s) > 0.3) with hope, anxiety, and symptoms of depression, which supported convergent validity. The test-retest reliability for items ranged between fair and good (k(w) = 0.37-0.61).
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| 7. |
- Möllerberg, Marie-Louise, et al.
(författare)
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Adaptation and psychometric evaluation of the short version of Family Sense of Coherence Scale in a sample of persons with cancer in the palliative stage and their family members
- 2019
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Ingår i: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 18:1, s. 24-32
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Tidskriftsartikel (refereegranskat)abstract
- ObjectivesFor patients’ entire families, it can be challenging to live with cancer during the palliative stage. However, a sense of coherence buffers stress and could help health professionals identify families that require support. Therefore, the short version of the Family Sense of Coherence Scale (FSOC-S) was translated, culturally adapted, and validated in a Swedish sample.MethodsTranslation and cross-cultural adaptation of the FSOC-S into Swedish was conducted in accordance with the World Health Organization's Process for Translation and Adaptation of Research Instruments guidelines. Participants were recruited from two oncology clinics and two palliative centers in Sweden.ResultsContent validity was supported by experts (n = 7), persons with cancer (n = 179), and family members (n = 165). Homogeneity among items was satisfactory for persons with cancer and family members (item-total correlations were 0.45‒0.70 and 0.55‒0.72, respectively) as well as internal consistency (ordinal alpha = 0.91 and 0.91, respectively). Factor analyses supported unidimensionality. FSOC-S correlated (rs > 0.3) with hope, anxiety, and symptoms of depression, which supported convergent validity. The test-retest reliability for items ranged between fair and good (kw = 0.37‒0.61).Significance of ResultsThe FSOC-S has satisfactory measurement properties to assess family sense of coherence in persons with cancer and their family members. FSOC-S could be used to identify family members who experience low levels of perceived family sense of coherence which provides health care professionals with insight into families’ needs and ability to live with cancer in the palliative stage.
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| 8. |
- Möllerberg, Marie-Louise, et al.
(författare)
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Applying a measurement system analysis approach to dyadic data
- 2024
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Konferensbidrag (populärvet., debatt m.m.)abstract
- Introduction : The Person-Centred Care instrument for outpatient care (PCCoc) is a 36-item patient-reported experience measure with 4 ordered response categories, that aims to capture the degree of perceived person-centred care (PCC) from a patient perspective among persons with long-term conditions. The PCCoc is based on a framework that conceptualises outpatient PCC from lower to higher levels of perceived PCC, from personalization via shared decision-making to empowerment, where 35 of the PCCoc items are a part of the framework´s hierarchy. This study investigates to what extent empirical item responses are consistent with the hierarchical PCCoc conceptual framework among persons with long-term conditions in outpatient care. Methods : PCCoc data (322 responses) from persons with long-term psychiatric, cardiological, rheumatological or neurological conditions were analysed. The Rasch measurement model (RMM) was used to evaluate model fit and the empirical item ordering. Correspondence between the empirical and conceptually expected item hierarchies was assessed graphically and using the polyserial correlation between RMM derived item locations and their a-priori expected rank order. Result : Two items showed clear misfit to the RMM (fit residuals >4.9). The polyserial correlation between empirical item locations and the expected rank order using all 35 PCCoc items was 0.64; after removing the 2 misfitting items it was 0.71. In addition, subtests (i.e., testlets consisting of a combination of all items belonging to the respective hierarchical domain) were created to account for any local dependency. Subtest locations on the hierarchical continuum indicated good correspondence between empirical data and the conceptual hierarchy, when based on 35 as well as 33 items. Both subtests had a polyserial correlation of 0.99 between testlet locations and the expected rank order. Conclusion : The observed correspondence between empirical data and the conceptual framework indicates that the PCCoc reflects the underlying framework, and therefore can be a valuable instrument to support targeted PCC-promoting interventions.
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| 9. |
- Möllerberg, Marie-Louise, et al.
(författare)
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Evaluation of skin reactions during proton beam radiotherapy : patient-reported versus clinician-reporte
- 2021
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Ingår i: Technical innovations & patient support in radiation oncology. - : Elsevier. - 2405-6324. ; 19, s. 11-17
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Tidskriftsartikel (refereegranskat)abstract
- Background: Skin reaction is a common side-effect of radiotherapy and often only assessed as clinician-reported outcome (CRO). The aim was to examine and compare patient-reported outcome (PRO) of skin reactions with CRO for signs of acute skin reactions for patients with primary brain tumour receiving proton beam radiotherapy (PBT). A further aim was to explore patients' experiences of the skin reactions.Methods: Acute skin reactions were assessed one week after start of treatment, mid-treatment and end of treatment among 253 patients with primary brain tumour who underwent PBT. PRO skin reactions were assessed with the RSAS and CRO according to the RTOG scale. Fleiss' kappa was performed to measure the inter-rater agreement of the assessments of skin reactions.Results: The results showed a discrepancy between PRO and CRO acute skin reactions. Radiation dose was associated with increased skin reactions, but no correlations were seen for age, gender, education, occupation, other treatment or smoking. There was a poor agreement between patients and clinicians (κ = -0.016) one week after the start of PBT, poor (κ = -0.045) to (κ = 0.396) moderate agreement at mid treatment and poor (κ = -0.010) to (κ = 0.296) moderate agreement at end of treatment. Generally, patients' symptom distress toward skin reactions was low at all time points.Conclusion: The poor agreement between PRO and CRO shows that the patient needs to be involved in assessments of skin reactions for a more complete understanding of skin reactions due to PBT. This may also improve patient experience regarding involvement in their own care.
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| 10. |
- Möllerberg, Marie-Louise, et al.
(författare)
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Evaluation of skin reactions during proton beam radiotherapy – Patient-reported versus clinician-reported
- 2021
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Ingår i: Technical Innovations and Patient Support in Radiation Oncology. - : Elsevier Ireland Ltd. - 2405-6324. ; 19, s. 11-17
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Tidskriftsartikel (refereegranskat)abstract
- Background: Skin reaction is a common side-effect of radiotherapy and often only assessed as clinician-reported outcome (CRO). The aim was to examine and compare patient-reported outcome (PRO) of skin reactions with CRO for signs of acute skin reactions for patients with primary brain tumour receiving proton beam radiotherapy (PBT). A further aim was to explore patients’ experiences of the skin reactions. Methods: Acute skin reactions were assessed one week after start of treatment, mid-treatment and end of treatment among 253 patients with primary brain tumour who underwent PBT. PRO skin reactions were assessed with the RSAS and CRO according to the RTOG scale. Fleiss’ kappa was performed to measure the inter-rater agreement of the assessments of skin reactions. Results: The results showed a discrepancy between PRO and CRO acute skin reactions. Radiation dose was associated with increased skin reactions, but no correlations were seen for age, gender, education, occupation, other treatment or smoking. There was a poor agreement between patients and clinicians (κ = −0.016) one week after the start of PBT, poor (κ = −0.045) to (κ = 0.396) moderate agreement at mid treatment and poor (κ = −0.010) to (κ = 0.296) moderate agreement at end of treatment. Generally, patients’ symptom distress toward skin reactions was low at all time points. Conclusion: The poor agreement between PRO and CRO shows that the patient needs to be involved in assessments of skin reactions for a more complete understanding of skin reactions due to PBT. This may also improve patient experience regarding involvement in their own care. © 2021 The Author(s)
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