| 1. |
- Gabrielsson, Hanna, 1977-, et al.
(författare)
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Views on everyday life among adults with spina bifida : an exploration through photovoice
- 2020
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Ingår i: International Journal of Qualitative Studies on Health and Well-being. - : Co-Action Publishing. - 1748-2623 .- 1748-2631. ; 15:1
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to actively integrate expertise of persons living with spina bifida, to explore conditions embedded in their everyday life. This was important because young adults with spina bifida risk not being able to fully participate in the community on equal terms and in accordance with their own preferences. Photovoice, a community-based participatory research approach, was utilized to engage participants through dialogue and photography. An exhibition was created to share results with community and stakeholders. An overarching theme that characterized the experiences of the group was, "an adaptation for us, but it works for no one". Findings are presented as: "Accessibility-a never-ending project," "Tensions of a normative view," and "Power to influence." Findings integrated everyday life metaphors photographically depicted by broken elevators, unsafe transportation, closed doors and not experiencing real opportunities of involvement. Tensions in everyday life experienced by persons living with spina bifida can inform conditions relevant and necessary to support community participation, particulary among persons living with disability.
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| 2. |
- Ozanne, Anneli, 1978, et al.
(författare)
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Symptom relief during last week of life in neurological diseases
- 2019
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Ingår i: Brain and Behavior. - : Wiley. - 2162-3279. ; 9:8
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Tidskriftsartikel (refereegranskat)abstract
- Objectives The aim of this study was to investigate symptom prevalence, symptom relief, and palliative care indicators during the last week of life, comparing them for patients with motor neuron disease (MND), central nervous system tumors (CNS tumor), and other neurological diseases (OND). Material & Methods Data were obtained from the Swedish Register for Palliative Care, which documents care during the last week of life. Logistic regression was used to compare patients with MND (n = 419), CNS tumor (n = 799), and OND (n = 1,407) as the cause of death. Results The most prevalent symptoms for all neurological disease groups were pain (52.7% to 72.2%) and rattles (58.1% to 65.6%). Compared to MND and OND, patients with CNS tumors were more likely to have totally relieved pain, shortness of breath, rattles, and anxiety. They were also more likely to have their pain assessed with a validated tool; to receive symptom treatment for anxiety, nausea, rattles, and pain; to have had family members receive end-of-life discussions; to have someone present at death; and to have had their family members offered bereavement support. Both patients with CNS tumor and MND were more likely than patients with OND to receive consultation with a pain unit and to have had end-of-life discussions. Conclusions The study reveals high symptom burden and differences in palliative care between the groups during the last week of life. There is a need for person-centered care planning based on a palliative approach, focused on improving symptom assessments, relief, and end-of-life conversations.
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| 3. |
- Elf, Kristin, et al.
(författare)
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Electroencephalographic Patterns During Common Nursing Interventions in Neurointensive Care : A Descriptive Pilot Study
- 2019
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Ingår i: Journal of Neuroscience Nursing. - 0888-0395 .- 1945-2810. ; 51:1, s. 10-15
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Tidskriftsartikel (refereegranskat)abstract
- Background: Many patients with neurological insults requiring neurointensive care have an increased risk of acute symptomatic seizures. Various nursing interventions performed when caring for these patients may elicitpathological cerebral electrical activity including seizures and stimulus-induced rhythmic, periodic, or ictal discharges (SIRPIDs). The aim was to explore changes in electroencephalogram (EEG) due to neurointensive care nursing interventions.Methods: A convenience sample was recruited between November 2015 and April 2016, consisting of 12 adult patients with impaired consciousness due to a neurosurgical condition. Continuous EEG and simultaneous video recordings of nursing interventions were collected 48 continuous hours for each patient. Two analysts categorized the video recordings for common nursing interventions, and a neurophysiologist analyzed the EEGs.Results: In total, 976 nursing interventions were observed. Epileptiform activity was observed in 4 patients (33%), during 1 nursing intervention episode each (0.4%). The 4 observed episodes of epileptiform activity occurred during multiple simultaneous nursing interventions (n = 3) and hygienic interventions (n = 1). Stimulus-induced rhythmic, periodic, or ictal discharges were observed in 1patient (8%), in 1 single nursing intervention (0.1%). The observed SIRPID soccurred during repositioning of thepatient. All patients had muscle artifacts, during 353 nursing interventions (36.3%). The duration of nursing interventions was longer for those with simultaneous muscle artifacts (median, 116 seconds) than those without muscle artifacts, epileptiform activity, or SIRPIDs (median, 89.0 seconds). With regard to epileptiform activityand SIRPIDs, the median durations of the nursing interventions were 1158 and 289 seconds, respectively.Conclusion: The results of this pilot study indicate that muscle artifacts seem prevalent during nursing interventions and may be a sign of stress. Nurses should be aware of the risk of inducing stress by performing regular nursing interventions in daily practice, consider shorter or fewer interventions at a time in sensitive patients, and administer sedation accordingly. Considering that this was a pilot study, more research that investigates correlations between EEG patterns and nursing interventions in larger samples is needed.
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| 4. |
- Funkquist, Anders, 1977-, et al.
(författare)
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Higher CSF/serum free-T4 ratio is associated with improvement of quality of life during treatment with L-thyroxine
- 2023
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Ingår i: Journal of Neuroendocrinology. - : Wiley-Blackwell Publishing Inc.. - 0953-8194 .- 1365-2826. ; 35:5
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Tidskriftsartikel (refereegranskat)abstract
- Up to 20% of individuals with primary hypothyroidism treated with L-thyroxine still suffer from severe symptoms. These are supposedly brain derived and involve both cognitive and emotional domains. Previously, no consistent relationship has been found between thyroid hormones (TH) or TSH levels in blood and quality of life (QoL). Recently, we reported an association between cerebrospinal fluid (CSF)/serum free-thyroxine (f-T4) ratio and QoL, in juvenile hypothyroid patients. Here, we investigated if CSF/serum f-T4 ratio and QoL estimates correlate also during L-thyroxine treatment. Moreover, the CSF biomarker neurogranin (Ng) was used as a biomarker for synaptic function and integrity in clinical research. Ng is partially controlled by TH and therefore we investigated the relationship between QoL parameters and Ng levels. Patients diagnosed with primary hypothyroidism were investigated using vital parameters, serum and CSF analyses of TH, TSH, Ng and QoL questionnaires. Similar procedures were performed after 6 months of treatment. The most marked associations with QoL were found for CSF/serum f-T4 ratio, which was strongly related to several QoL parameters such as the mental subscore of SF-36 (r = 0.83, p < .0005). Ng, which did not differ from that in our healthy controls, was lower in some patients during treatment and higher in others. However, the change in Ng during treatment was significantly correlated with QoL parameters including the mental subscore of SF-36 (r = -0.86, p < .0001). In addition, the CSF/serum f-T4 ratio correlated with the change in Ng (r = -0.75, p = .001). Our results suggest that the ratio between CSF and serum f-T4 is an important biomarker for QoL during treatment of patients with primary hypothyroidism, so far in research, but in the future maybe also in clinical settings. Moreover, this ratio also correlates with the changes in Ng levels during L-thyroxine treatment, further supporting the impact of the TH balance between serum and CSF on QoL.
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| 5. |
- Wouter, V., et al.
(författare)
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The Predictive Value of Fear Avoidance Beliefs for Outcomes Following Surgery for Lumbar Degenerative Disease: A Systematic Review and Best Evidence Synthesis
- 2022
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Ingår i: Pain Physician. - 1533-3159 .- 2150-1149. ; 25:6, s. 441-
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Tidskriftsartikel (refereegranskat)abstract
- Background: Currently, evidence regarding fear avoidance beliefs as potential predictors for lumbar surgery outcomes seems insufficient and strong conclusions are not yet available. Objective: This systematic review aimed to evaluate the predictive value of preoperative fear avoidance beliefs for postoperative pain intensity, functional status, and health-related quality of life following surgery for lumbar degenerative disease. Study Design: Systematic review and best evidence synthesis. Methods: An extensive search was performed in PubMed/Medline, EMBASE, PsycINFO, CINAHL and the Cochrane library for articles published up until October 2021. Two independent reviewers performed the screening, data extraction, and quality assessment, with a third independent reviewer consulting to resolve any disagreement. Observational studies that included patients undergoing surgery for lumbar degenerative disease, as well as evaluated fear avoidance beliefs (i.e., pain-related fear, pain catastrophizing, pain anxiety) in relation to a surgical outcome measure (i.e., pain intensity, functional status and health-related quality of life) were included in the review. The CHARMS-and QUIPS-tools were used for data extraction and quality assessment, respectively. A best evidence synthesis was performed resulting in conclusions regarding strong, moderate, conflicting, and limited levels of evidence. Results: A total of 24 studies (n = 17,881) were included in this review. Following best evidence synthesis, 3 included studies reported no significant predictive value of preoperative pain-related fear for postoperative pain intensity resulting in moderate evidence for this relationship. Moderate evidence was also found indicating no significant predictive value of preoperative pain-related fear for postoperative functional status, as 6 out of 8 relevant studies reported this result. Only one study reported on the predictive value of preoperative pain catastrophizing for postoperative health -related quality of life, resulting in limited evidence for the absence of this predictive relationship. All other relationships were found to have conflicting evidence. Limitations: To evaluate surgical outcome, only patient-reported outcome measures as used by spine registries were included. Thus, our findings cannot be extrapolated to all surgery outcomes following lumbar degenerative disease and should only be interpreted in relation to postoperative pain intensity, functional status, or health-related quality of life. Conclusion: Best evidence synthesis showed moderate evidence indicating that preoperative pain-related fear is not a significant predictor for postoperative pain and function following surgery for lumbar degenerative disease. Additionally, limited evidence was found for a lack of predictive value of preoperative pain catastrophizing for postoperative health-related quality of life. As current evidence regarding the predictive value of preoperative fear avoidance beliefs following such a surgery is mixed, further research is required before more definitive conclusions can be made.
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