| 1. |
- Hammarlund, Catharina Sjödahl, et al.
(författare)
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Facing and dealing with emotional turbulence : Living with newly diagnosed Parkinson's disease
- 2024
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Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley-Blackwell Publishing Ltd. - 0283-9318 .- 1471-6712.
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Tidskriftsartikel (refereegranskat)abstract
- INTRODUCTION : The experiences of living with Parkinson's disease (PD) from the perspective of newly diagnosed persons with PD (PwPD) have not been previously described. AIM : This study aimed to gain a better understanding of the impact of living with the early stages of PD. METHODS : A qualitative interview study was conducted among nine persons, seven men and two women, from southern Sweden. Participants had a median age of 71 (min-max, 64-77) years and had been diagnosed with PD for a median of 5 (min-max, 2-12) months. Interviews were recorded and analysed using systematic text condensation. RESULTS : The analysis resulted in one core category, Facing and dealing with emotional turbulence, and four categories with 2-3 subcategories each: Something is wrong (Vague signs of change; Losing control); The going gets tough (Recalling; Lack of motivation); Losing direction (Uncertainties; Frightened of disease progression) and Dealing with life (Avoiding social situations; Hope and despair; Ease worries).CONCLUSION : Newly diagnosed PwPD face emotional turbulence with increasing challenges in managing everyday basic needs. Impaired functioning affects self-esteem and identity, which calls for strategies to overcome emotional reactions of embarrassment, frustration and worry. A sense of lost control and direction increased as the future became more uncertain. The participants' emotional burden and struggle to find a reason to go on or some solution to their new situation left them with both hope and despair. Our results suggest that a person-centred needs-based approach may help newly diagnosed PwPD deal with their new life situation.
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| 2. |
- Bladh, Stina, et al.
(författare)
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Psychometric performance of a generic walking scale (Walk-12G) in Multiple Sclerosis and Parkinson's disease
- 2012
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Ingår i: Journal of Neurology. - Heidelberg : Springer Berlin/Heidelberg. - 0340-5354 .- 1432-1459. ; 259:4, s. 729-738
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Tidskriftsartikel (refereegranskat)abstract
- Walking difficulties are common in neurological and other disorders, as well as among the elderly. There is a need for reliable and valid instruments for measuring walking difficulties in everyday life since existing gait tests are clinician rated and focus on situation specific capacity. The Walk-12G was adapted from the 12-item multiple sclerosis walking scale as a generic patient-reported rating scale for walking difficulties in everyday life. The aim of this study is to examine the psychometric properties of the Walk-12G in people with multiple sclerosis (MS) and Parkinson’s disease (PD). The Walk-12G was translated into Swedish and evaluated qualitatively among 25 people with and without various neurological and other conditions. Postal survey (MS, n = 199; PD, n = 189) and clinical (PD, n = 36) data were used to test its psychometric properties. Respondents considered the Walk-12G relevant and easy to use. Mean completion time was 3.5 min. Data completeness was good (<5% missing item responses) and tests of scaling assumptions supported summing item scores to a total score (corrected item-total correlations >0.6). Coefficient alpha and test–retest reliabilities were >0.9, and standard errors of measurement were 2.3–2.8. Construct validity was supported by correlations in accordance with a priori expectations. Results are similar to those with previous Walk-12G versions, indicating that scale adaptation was successful. Data suggest that the Walk-12G meets rating scale criteria for clinical trials, making it a valuable complement to available gait tests. Further studies involving other samples and application of modern psychometric methods are warranted to examine the scale in more detail.
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| 3. |
- Blom, Lisbeth, et al.
(författare)
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The SBAR model for communication between health care professionals : a clinical intervention pilot study.
- 2015
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Ingår i: International Journal of Caring Sciences. - 1791-5201 .- 1792-037X. ; 8:3, s. 530-535
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Tidskriftsartikel (refereegranskat)abstract
- Background: SBAR has been suggested as a means to avoid unclear communication between health care professionals and in turn enhance patient safety in the healthcare sector. Aim: to evaluate hospital-based health care professionals experiences from using the Situation, Background, Assessment and Recommendation (SBAR) communication model. Methodology: A quantitative, descriptive, comparative pre- and post-intervention questionnaire-based pilot study before and after the implementation of SBAR at surgical hospitals wards. Open comments to questionnaire items were analyzed qualitatively. Results: The introduction of SBAR increased the experience of having a well-functioning structure for oral communication among health care professionals regarding patients’ conditions. Qualitative findings revealed the categories: Use of SBAR as a structure, Reporting time, Patient safety, and Personal aspects. Conclusions: SBAR is perceived as effective to get a structure of the content in patient reports, which may facilitate patient safety.
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| 4. |
- Blom, Lisbeth, et al.
(författare)
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The SBAR model for communication between health care professionals : a clinical intervention pilot study.
- 2015
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Ingår i: International Journal of Caring Sciences. - : Athens Alexander Technological Educational Institu. - 1791-5201. ; 8:3, s. 530-535
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Tidskriftsartikel (refereegranskat)abstract
- Background: SBAR has been suggested as a means to avoid unclear communication between health care professionals and in turn enhance patient safety in the healthcare sector. Aim: to evaluate hospital-based health care professionals experiences from using the Situation, Background, Assessment and Recommendation (SBAR) communication model. Methodology: A quantitative, descriptive, comparative pre- and post-intervention questionnaire-based pilot study before and after the implementation of SBAR at surgical hospitals wards. Open comments to questionnaire items were analyzed qualitatively. Results: The introduction of SBAR increased the experience of having a well-functioning structure for oral communication among health care professionals regarding patients’ conditions. Qualitative findings revealed the categories: Use of SBAR as a structure, Reporting time, Patient safety, and Personal aspects. Conclusions: SBAR is perceived as effective to get a structure of the content in patient reports, which may facilitate patient safety.
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| 5. |
- Ekstrand, Joakim, et al.
(författare)
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Transformation of Rasch model logits for enhanced interpretability
- 2022
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Ingår i: BMC Medical Research Methodology. - : BioMed Central (BMC). - 1471-2288. ; 22:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: The Rasch model allows for linear measurement based on ordinal item responses from rating scales commonly used to assess health outcomes. Such linear measures may be inconvenient since they are expressed as log-odds units (logits) that differ from scores that users may be familiar with. It can therefore be desirable to transform logits into more user-friendly ranges that preserve their linear properties. In addition to user-defined ranges, three general transformations have been described in the literature: the least measurable difference (LMD), the standard error of measurement (SEM) and the least significant difference (LSD). The LMD represents the smallest possible meaningful unit, SEM relates the transformed scale values to measurement uncertainty (one unit on the transformed scale represents roughly one standard error), and LSD represents a lower bound for how coarse the transformed scale can be without loss of valid information. However, while logit transformations are relatively common in the health sciences, use of LMD, SEM and LSD transformations appear to be uncommon despite their potential role. Methods: Logit transformations were empirically illustrated based on 1053 responses to the Epworth Sleepiness Scale. Logit measures were transformed according to the LMD, SEM and LSD, and into 0-10, 0-100, and the original raw score (0-24) ranges. These transformations were conducted using a freely available Excel tool, developed by the authors, that transforms logits into user-defined ranges along with the LMD, SEM and LSD transformations. Results: Resulting LMD, SEM and LSD transformations ranged 0-34, 0-17 and 0-12, respectively. When considering these relative to the three user-defined ranges, it is seen that the 0-10 range is narrower than the LSD range (i.e., loss of valid information), and a 0-100 range gives the impression of better precision than there is, since it is considerably wider than the LMD range. However, the 0-24 transformation appears reasonable since it is wider than the LSD, but narrower than the LMD ranges. Conclusions: It is suggested that LMD, SEM and LSD transformations are valuable for benchmarking in deciding appropriate ranges when transforming logit measures. This process can be aided by the Excel tool presented and illustrated in this paper.
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| 6. |
- Gasser, Fredrik, et al.
(författare)
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Further development and evaluation of a questionnaire targeting person-centred outpatient care for persons with long-term conditions
- 2023
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Ingår i: Journal of Patient-Reported Outcomes. - : Springer International Publishing AG. - 2509-8020. ; 7:1, s. 1-10
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Tidskriftsartikel (refereegranskat)abstract
- AIM: To further develop the Person-Centred Care instrument for outpatient care (PCCoc), evaluate its user-friendliness and content validity, and to explore its basic psychometric properties in various outpatient settings for adults with long-term conditions. BACKGROUND: Person-centred care (PCC) has been identified as a key factor to provide high-quality care. However, there is still a lack of instruments that are based on a clearly defined framework for PCC for persons with long-term conditions in an outpatient context. The PCCoc is a patient-reported experience measure under development aiming to fill this gap. METHODS: First, the 35-item PCCoc was reviewed and further developed in collaboration with a user-council. Second, the revised 36-item PCCoc was tested among persons receiving outpatient care for various long-term conditions. A total of 179 persons with long-term conditions from four different specialties participated in the study. User-friendliness and content validity were assessed through structured interviews and relevance ratings of each item. Content validity index (CVI) for individual items (I-CVI) and for the overall scale (S-CVI) were calculated, and basic psychometric properties of the PCCoc using classical test theory were explored. RESULTS: It took a median of 8 min for participants to complete the PCCoc. The majority found items easy to understand, response categories distinct and that no important areas were missing. Results from the CVI analyses suggested that participants found the content of the PCCoc relevant (I-CVI range 0.82-1, S-CVI = 0.95). All psychometric properties examined were satisfactory (e.g., item-total correlations, 0.45-0.75; Cronbach's alpha, 0.96; test-retest stability, 0.83). CONCLUSION: The PCCoc was considered user-friendly and relevant by the intended users, and its psychometric properties were satisfactory. This implies that the PCCoc can be a valuable instrument for evaluating and developing PCC in outpatient care for persons with long-term conditions. However, further studies of the PCCoc are needed to establish its measurement properties in various outpatient settings.
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| 7. |
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| 8. |
- Hagell, Peter, 1966-, et al.
(författare)
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Assessment of burden among family caregivers of people with Parkinson’s disease using the Zarit Burden Interview
- 2017
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Ingår i: Journal of Pain and Symptom Management. - 0885-3924 .- 1873-6513. ; 53:2, s. 272-278
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Tidskriftsartikel (refereegranskat)abstract
- Context: Previous studies have supported the psychometric properties of the 22-item Zarit Burden Interview (ZBI-22) scale among family caregivers of people with various disorders, including Parkinson´s disease (PD). However, its short-forms have not been psychometrically tested among PD family caregivers, and available psychometric analyses have not accounted for the ordinal nature of item-level data.Objectives: To assess the psychometric properties of the ZBI-22 and its short forms among family caregivers of people with PD, while taking account for the ordinal nature of data.Methods: Cross-sectional postal survey ZBI-22 data from 66 family caregiver members (59% women; mean age, 69.6 years) of a local Swedish PD society branch were analysed according to classical test theory methods based on polychoric/polyserial correlations. Results: Missing item responses were ≤5%. Corrected item-total correlations were ≥0.42 and floor-/ceiling effects were <20%, besides for the briefest (4- and 1-item) short-forms (20% and 40% floor effects, respectively). Reliability was good for all scales (ordinal alpha, 0.89-0.95). External construct validity was in general accordance with a priori expectations. Short-forms demonstrated good criterion-related validity (rs 0.87-0.99) and discriminative ability (AUC, 0.91-0.98) relative to the full ZBI-22.Conclusion: This study provides support for the reliability and validity of the ZBI-22 and its various short forms for use among PD family caregivers. In studies where caregiver burden is a central outcome, either ZBI-22 or -12 is suggested for use; other short-forms can be used when caregiver burden is of less central focus or for clinical screening.
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| 9. |
- Hagell, Peter, et al.
(författare)
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Assessment of Burden Among Family Caregivers of People With Parkinson's Disease Using the Zarit Burden Interview
- 2017
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier. - 0885-3924 .- 1873-6513. ; 53:2, s. 272-278
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Tidskriftsartikel (refereegranskat)abstract
- CONTEXT: Previous studies have supported the psychometric properties of the 22-Item Zarit Burden Interview (ZBI-22) scale among family caregivers of people with various disorders, including Parkinson's disease (PD). However, its short forms have not been psychometrically tested among PD family caregivers, and available psychometric analyses have not accounted for the ordinal nature of item-level data.OBJECTIVES: To assess the psychometric properties of the ZBI-22 and its short forms among family caregivers of people with PD, while taking account for the ordinal nature of data.METHODS: Cross-sectional postal survey ZBI-22 data from 66 family caregiver members (59% women; mean age 69.6 years) of a local Swedish PD society branch were analyzed according to classical test theory methods based on polychoric/polyserial correlations.RESULTS: Missing item responses were ≤ 5%. Corrected item-total correlations were ≥ 0.42 and floor/ceiling effects were <20%, besides for the briefest (4- and 1-item) short forms (20% and 40% floor effects, respectively). Reliability was good for all scales (ordinal alpha 0.89-0.95). External construct validity was in general accordance with a priori expectations. Short forms demonstrated good criterion-related validity (rs 0.87-0.99) and discriminative ability (area under the curve, 0.91-0.98) relative to the full ZBI-22.CONCLUSION: This study provides support for the reliability and validity of the ZBI-22 and its various short forms for use among PD family caregivers. In studies where caregiver burden is a central outcome, either ZBI-22 or ZBI-12 is suggested for use; other short forms can be used when caregiver burden is of less central focus or for clinical screening.
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| 10. |
- Hagell, Peter, et al.
(författare)
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Beware of the origin of numbers : Standard scoring of the SF-12 and SF-36 summary measures distorts measurement and score interpretations
- 2017
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Ingår i: Research in Nursing & Health. - : Wiley-Blackwell. - 0160-6891 .- 1098-240X. ; 40:4, s. 378-386
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Tidskriftsartikel (refereegranskat)abstract
- The 12-item Short Form Health Survey (SF-12) is a generic health rating scale developed to reproduce the Physical and Mental Component Summary scores (PCS and MCS, respectively) of a longer survey, the SF-36. The standard PCS/MCS scoring algorithm has been criticized because its expected dimensionality often lacks empirical support, scoring is based on the assumption that physical and mental health are uncorrelated, and because scores on physical health items influence MCS scores, and vice versa. In this paper, we review the standard PCS/MCS scoring algorithm for the SF-12 and consider alternative scoring procedures: the RAND-12 Health Status Inventory (HSI) and raw sum scores. We corroborate that the SF-12 reproduces SF-36 scores but also inherits its problems. In simulations, good physical health scores reduce mental health scores, and vice versa. This may explain results of clinical studies in which, for example, poor physical health scores result in good MCS scores despite compromised mental health. When applied to empirical data from people with Parkinson's disease (PD) and stroke, standard SF-12 scores suggest a weak correlation between physical and mental health (r(s). 16), whereas RAND-12 HSI and raw sum scores show a much stronger correlation (r(s). 67-.68). Furthermore, standard PCS scores yield a different statistical conclusion regarding the association between physical health and age than do RAND-12 HSI and raw sum scores. We recommend that the standard SF-12 scoring algorithm be abandoned in favor of alternatives that provide more valid representations of physical and mental health, of which raw sum scores appear the simplest.
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