| 1. |
- Sköld, Johanna, 1976-, et al.
(författare)
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Conflicting or complementing narratives? : Interviewees' stories compared to their documentary records in the Swedish commission to inquire into child abuse and negelct in institutions and foster homes
- 2012
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Ingår i: Archives and Manuscripts. - : Australian Society of Archivists. - 0157-6895 .- 2164-6058. ; 40:1, s. 15-28
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Tidskriftsartikel (refereegranskat)abstract
- The Swedish Commission to Inquire into Child Abuse and Neglect in Institutions and Foster Homes has interviewed 866 people who claim that they were subjected to neglect and abuse during their time in municipal or state care in Sweden. The inquiry has also examined many of the interviewees’ documentary records. This article is based on the interviews and documentary records for 140 individuals and raises questions about the possibilities of corroborating stories of abuse and neglect through documentary records. In this study we found that the interviewees and the records told similar stories about where the interviewee resided during care and the duration of placements. However, in details the sources represented different perspectives on the same individual’s history. Important aspects to take into consideration are that case files seldom reveal anything about abuse and neglect, and the tendency of authorities to make only cautious descriptions of suspected abuse. The study also highlights the differences between practices of recordkeeping which mean that some individuals can read extensive case files about themselves while other peoples’ care histories have left barely any trace in the archives. In this article, these findings are used to question expectations about the possibility of establishing one ‘truth’ of abuse in an individual case by collecting ‘evidence’ from several sources.
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| 2. |
- Abdulla, Maysaa, et al.
(författare)
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A population-based study of cellular markers in R-CHOP treated diffuse large B-cell lymphoma patients
- 2016
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Ingår i: Acta Oncologica. - 0284-186X .- 1651-226X. ; 55:9-10, s. 1126-1131
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Tidskriftsartikel (refereegranskat)abstract
- Aim: To determine the prognostic significance of co-expression of MYC, BCL-2 and BCL-6 proteins in combination with other biomarkers and clinical characteristics within a population-based cohort of diffuse large B-cell lymphoma (DLBCL) patients uniformly treated with R-CHOP.Patients and methods: The immunohistochemical (IHC) expression of CD10, BCL-2, BCL-6, MUM1, MYC, CD5, CD30, Ki-67 and p53 was evaluated in a retrospective, population-based study comprising 188 DLBCL patients treated with R-CHOP and diagnosed in Sweden between 2002 and 2012.Results: Patients had a median age at diagnosis of 64 years (26-85 years) with a male:female ratio of 1.4:1. Approximately half (52%) of the patients presented with an International Prognostic Index (IPI) age adjusted (IPIaa)2. Median follow-up time was 51 months (range 0.4-158) and the five-year lymphoma-specific survival (LSS) was 76%, five-year overall survival (OS) was 65% and five-year progression-free survival (PFS) was 61%. A high Ki-67 value was found in 59% of patients, while p53 overexpression was detected in 12% of patients and MYC, BCL-2 and BCL-6 expression were detected in 42%, 55% and 74% of patients, respectively. IPIaa2 (p=0.002), Ki-6770% (p=0.04) and p53 overexpression50% (p=0.02) were associated with inferior LSS and OS. Co-expression of both MYC (>40%) and BCL-2 (>70%) proteins was detected in 27% of patients and correlated with a significantly inferior LSS (p=0.0002), OS (p=0.009) and PFS (p=0.03). In addition, triple expression of MYC, BCL-2 and BCL-6, also correlated with a significantly inferior LSS (p=0.02).Conclusion: Concurrent expression of MYC and BCL-2 proteins, as detected by IHC, was strongly associated with an inferior survival in DLBCL patients treated with R-CHOP. Other markers affecting survival were triple expression of MYC, BCL-2 and BCL-6, IPIaa, high Ki-67 and p53 overexpression.
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| 3. |
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| 4. |
- Bernhard, Iréne, 1953-, et al.
(författare)
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A digital society for all? : Meanings, practices and policies for digital diversity
- 2019
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Ingår i: Proceedings of the 52nd Hawaii International Conference on System Sciences, 2019. - Honolulu, HI, USA. - 9780998133126 ; , s. 3067-3076
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Konferensbidrag (refereegranskat)abstract
- The concept of digital divides has been on the agenda in research and policy making for at least the last 20 years. But it is still, a challenge to grasp this concept that is so elusive and transforming. Inclusion, access and equality are still key values for democratic governance and must be addressed in particular when forming and contributing to a digital government. This paper seeks to intervene in current debates on digital divides and digital inclusion by analyzing two cases of responses among street-level public administration in relation to e-government services in Sweden. The case studies are strategically chosen and conducted in national agencies and in local public libraries. Three lines of contributions are discussed, firstly thei mportance to care for equality secondly the need to seethe non-users, and thirdly to discuss the potential of putting focus on digital diversity.
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| 5. |
- Flink, Ida, 1980-, et al.
(författare)
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Coping with painful sex : Development and initial validation of the CHAMP Sexual Pain Coping Scale
- 2015
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Ingår i: Scandinavian Journal of Pain. - : Elsevier. - 1877-8860 .- 1877-8879. ; 9, s. 74-80
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Tidskriftsartikel (refereegranskat)abstract
- Background and purpose: Recurrent vulvar pain is a common and debilitating condition which has received remarkably little attention in pain research. For instance, little is known about how these women cope with sexual activities, and there are no structured assessment tools. The purpose of this study was to explore coping strategies in this group, with a view to develop a measure to assess how women with vulvar pain cope with sexual activities.Methods: The current study is based on a subsample from a longitudinal study about vulvar pain in a student sample consisting of women between 18 and 35 years old (N = 964). Only data from the ones reporting recurrent vulvar pain during the last six months (N = 289) were used in the analyses. First, the CHAMP Sexual Pain Coping Scale (CSPCS) was created, with the aim of assessing how women with vulvar pain cope with sexual activities. The scale was inspired by previous research on women with vulvar pain as well as well-known coping strategies in other pain populations. Second, the psychometric properties of the scale were explored by analyzing the factor structure and internal reliability. Third, validity features were examined in terms of criterion validity and construct validity.Results: The analyses supported a three-factor solution, embracing the strategies endurance, avoidance and alternative coping. The internal reliability of the subscales turned out to be good, and the criterion validity was supported for all three subscales. The construct validity was clearly supported for the endurance and the avoidance subscales, but not for the alternative coping subscale.Conclusions: The findings support the CSPCS as an instrument for assessing how women with vulvar pain cope with sexual activities. The strategies endurance, avoidance and alternative coping correspond with findings from earlier research. Endurance reflects a tendency to engage in and continue with sexual activities despite pain, while attempting to minimize or suppress thoughts of pain. Avoidance, on the other hand, involves efforts to stay away from sexual activities, in particular vaginal penetration, because of fear of pain. Alternative coping refers to endeavours to find alternative sexual activities that do not necessarily involve vaginal penetration. Even though this first study indicates that the CSPCS may be psychometrically sound, more studies are needed to confirm the psychometric properties and clinical application of this instrument. In particular, the construct validity of the alternative coping subscale needs to be further evaluated.Implications: A valid instrument for assessing strategies for coping with sexual activities in this population has important clinical implications, since it provides a method that may enhance assessment procedures, be used in research, and stimulate the development of treatment.
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| 7. |
- Hedström, Johanna, et al.
(författare)
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Correlations Between Patient-Reported Dysphagia Screening and Penetration-Aspiration Scores in Head and Neck Cancer Patients Post-oncological Treatment.
- 2018
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Ingår i: Dysphagia. - : Springer Science and Business Media LLC. - 1432-0460 .- 0179-051X. ; 33:2, s. 206-215
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Tidskriftsartikel (refereegranskat)abstract
- Dysphagia is a common and severe toxicity after oncological treatment of head and neck cancer (HNC). The study aim was to investigate relationships between patient-reported dysphagia and clinically measured swallowing function in HNC after modern curative radiotherapy with or without chemotherapy to identify possible alarm symptoms for clinically manifest dysphagia. Patients with tumors of the tonsil, base of tongue, hypopharynx, and larynx treated in 2007-2015 were assessed for dysphagia post-treatment by telephone interview and videofluoroscopy (VFS). A study-specific categorized symptom score was used to determine patient-reported dysphagia (DESdC=presence of Drinking, Eating, Swallowing difficulties, and Coughing when eating/drinking (any combination); scores between 0 and 4 with 0=no symptom); the penetration-aspiration scale (PAS) to determine swallowing function by VFS. Swallowing difficulties were defined as DESdC≥1 and PAS≥2. Relationships between clinically relevant cut-offs for DESdC and PAS were determined by Pearson's correlation coefficient (Pr). Swallowing difficulties according to DESdC were reported by 89% of the patients and according to PAS by 60% at a median of 7months post-treatment. Averaged correlations between DESdC score 1/2/3/4 and PAS were 0.16/0.10/0.27/0.18. Almost one in two patients with DESdC score ≥3 had severe swallowing difficulties according to PAS. Correlations between individual DESdC:s were highest for swallowing and eating (Pr=0.53) and lowest for swallowing and coughing (Pr=0.11). Our data suggest that if a patient reports having swallowing difficulties, it is likely that he or she also has eating difficulties but not necessarily coughing problems when eating/drinking. However, if all these three symptoms are reported, it is likely that the patient will present with moderate or severe impaired swallowing function according to PAS and thus should be referred for further evaluation and treatment.
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| 8. |
- Hedström, Johanna, et al.
(författare)
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Quality of care in dysphagia patients: adaptation and validation of the Swedish SWAL-CARE questionnaire
- 2020
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Ingår i: Health and Quality of Life Outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 18:1
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Tidskriftsartikel (refereegranskat)abstract
- Background The aim of this study was to adapt the instrument and evaluate the psychometric properties of the Swedish version of the Swallowing Quality of Care questionnaire (S-SWAL-CARE) in patients with oropharyngeal dysphagia. Methods Translation and adaptation of the original SWAL-CARE into Swedish was performed according to established international guidelines. Field testing was performed using 100 patients with oropharyngeal dysphagia due to multiple reasons such as head and neck cancer and neurologic/neuromuscular disease, who had undergone swallowing evaluation within 6 months prior to the study. The patients answered the S-SWAL-CARE, the Quality from the Patient's Perspective (QPP) and the Swallowing Quality of Life (SWAL-QOL). Test-retest was performed in 20% of the participants. The reliability and validity of the S-SWAL-CARE were assessed by Pearson correlation coefficient and Cronbach's alpha as well as convergent and discriminative validity, respectively. Results The field testing of the S-SWAL-CARE resulted in sufficient reliability, with Cronbach's alpha values exceeding 0.90 for all domains. All items correlated strongly to their own domain, with weaker correlations to the other domains, indicating proper scale structure. Results also indicate sufficient convergent and discriminant validity when tested for association to the QPP domains and the SWAL-QOL Total score. The test-retest reliability of the S-SWAL-CARE demonstrated sufficient intraclass correlation coefficient (ICC) for the General advice domain (0.73) and Clinical advice domain (0.82). The ICC for the Patient satisfaction domain was lower (0.44). Conclusion The S-SWAL-CARE can be considered a reliable and valid tool to assess the dysphagia-related quality of care in a mixed Swedish dysphagia patient population.
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| 9. |
- Hedström, Johanna
(författare)
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Radiation-induced dysphagia in head and neck cancer - risk structures and methodological aspects
- 2019
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background/Aims: Swallowing difficulties are common after radiation therapy (RT) in head and neck cancer (HNC). The overall aim of this thesis was to address radiation-induced late dysphagia with regard to investigating anatomical risk structures related to the development of radiation-induced dysphagia, as well as methodological aspects in the evaluation of swallowing. Another objective was to translate and validate the quality of care instrument Swallowing Quality of Care questionnaire (SWAL-CARE) in a mixed Swedish dysphagia population. Methods: The studies were conducted at the Sahlgenska University Hospital and included patients from the otorhinolaryngology clinic. In study I-III, patients who had received curative (chemo)RT for HNC underwent a videofluoroscopic examination of swallowing function (VFS) 6-36 months post-RT. Dysphagia severity was measured according to the Penetration-Aspiration Scale (PAS). All patients answered questions regarding difficulties when drinking, eating, swallowing and coughing when eating/drinking (DESdC). Study I included 38 patients, and the VFS protocol included six boluses of different consistencies and sizes and two swallowing attempts per bolus. Comparisons were made regarding differences in PAS score between the first and second swallowing attempt for the respective boluses. Study II included 118 patients, and associations between DESdC and PAS scores were determined. Study III included 90 patients with delineation of potential risk structures for radiation-induced dysphagia. Associations between radiation dose and dysphagia severity were evaluated and relevant dose predictors were identified. In Study IV, translation and validation of the SWAL-CARE was performed. Field testing was conducted including 100 patients with oropharyngeal dysphagia. Results: In Study I, no differences were found between the first and second swallow attempt in VFS regarding PAS score, however large intra-individual dispersion was found. In Study II, a discrepancy regarding the severity of self-reported swallowing difficulties and instrumentally measured dysphagia was found. However, half of the patients who reported occurrence of at least three dysphagia symptoms (DESdC) also demonstrated high PAS score (≥6). In Study III, the mean dose to the epiglottis had the best discriminative ability for severe dysphagia (PAS≥6). Doses to the larynx and the contralateral submandibular gland as well as the parotid gland were also of importance. In Study IV, the validation of the S-SWAL-CARE demonstrated high validity and good internal consistency. Conclusion: In order to test the swallowing safety, the highest PAS score should be reported in VFS. Furthermore, if a patient reports difficulties eating, drinking and swallowing when asked direct questions it is likely that the patient will present with moderate to severe dysphagia according to PAS. In addition to established dysphagia organs-at-risk (OARs), our data suggest that epiglottic and submandibular gland doses are important for swallowing function post-RT. Finally, the S-SWAL-CARE can be considered a reliable and valid tool to assess the dysphagia-related quality of care. Keywords: head and neck neoplasms; radiation therapy; dysphagia; videofluoroscopy; Penetration-Aspiration Scale (PAS); patient-reported outcomes (PRO); Quality of Care; validation studies
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| 10. |
- Hedström, Johanna, et al.
(författare)
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Within-Bolus Variability of the Penetration-Aspiration Scale Across Two Subsequent Swallows in Patients with Head and Neck Cancer
- 2017
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Ingår i: Dysphagia. - : Springer Science and Business Media LLC. - 0179-051X .- 1432-0460. ; 32:5, s. 683-690
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Tidskriftsartikel (refereegranskat)abstract
- To compare two consecutive swallowing attempts to study if there is a difference in Rosenbek's penetration-aspiration scale (PAS) scores between the first and second swallowing attempt of the same bolus type in videofluoroscopic examination of swallowing (VFS). Additional aims include reflecting on which bolus sizes and consistencies are the most relevant to include in further studies for head and neck cancer (HNC) patients. The VFS for 38 patients curatively treated for HNC was studied. All included patients showed swallowing difficulties (PAS >= 2). The examination protocol included two swallows each of six different boluses: 3, 5, 10, 20 ml thin, 5 ml mildly thick, and 3 ml of extremely thick liquid. All boluses were compared between the first and second swallowing attempt with regard to PAS scores. No statistically significant differences in PAS were found between the first and second swallow for any of the boluses in this study on group level. For 20 ml thin and 3 ml extremely thick liquid, there were low Intra-Class Correlations, indicating a low within-bolus agreement. The greatest within-bolus differences were found for 20 ml thin, 5 ml mildly thick and 3 ml extremely thick liquid, which demonstrated high intra-individual coefficient of variation (0.458-0.759). The data of this study show a high within-bolus variability of the PAS score between two subsequent swallows for all different consistencies. In order to assess swallowing safety, the highest PAS score for each bolus type is suggested for use in studies of HNC patients.
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