Publications by authors named "Stefan Nilsson"

123 Publications

Evaluating pictorial support in person-centred care for children (PicPecc): a protocol for a crossover design study.

BMJ Open 2021 May 4;11(5):e042726. Epub 2021 May 4.

University of Gothenburg Centre for Person-Centred Care, and Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden.

Introduction: This study protocol outlines the evaluation of the pictorial support in person-centred care for children (PicPecc). PicPecc is a digital tool used by children aged 5-17 years to self-report symptoms of acute lymphoblastic leukaemia, who undergo high-dose methotrexate treatments. The design of the digital platform follows the principles of universal design using pictorial support to provide accessibility for all children regardless of communication or language challenges and thus facilitating international comparison.

Methods And Analysis: Both effect and process evaluations will be conducted. A crossover design will be used to measure the effect/outcome, and a mixed-methods design will be used to measure the process/implementation. The primary outcome in the effect evaluation will be self-reported distress. Secondary outcomes will be stress levels monitored via neuropeptides, neurosteroids and peripheral steroids indicated in plasma blood samples; frequency of in-app estimation of high levels of distress by the children; children's use of analgesic medicine and person centeredness evaluated via the questionnaire Visual CARE Measure. For the process evaluation, qualitative interviews will be carried out with children with cancer, their legal guardians and case-related healthcare professionals. These interviews will address experiences with PicPecc in terms of feasibility and frequency of use from the child's perspective and value to the caseworker. Interview transcripts will be analysed using an interpretive description methodology.

Ethics And Dissemination: Ethical approval was obtained from the Swedish Ethical Review Authority (reference 2019-02392; 2020-02601; 2020-06226). Children, legal guardians, healthcare professionals, policymaking and research stakeholders will be involved in all stages of the research process according to Medical Research Council's guidelines. Research findings will be presented at international cancer and paediatric conferences and published in scientific journals.

Trial Registration: ClinicalTrials.gov; NCT04433650.
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http://dx.doi.org/10.1136/bmjopen-2020-042726DOI Listing
May 2021

Literature review: Evidence-based health outcomes and perceptions of the built environment in pediatric hospital facilities.

J Pediatr Nurs 2021 Apr 16. Epub 2021 Apr 16.

Sahlgrenska University Hospital, Gothia Forum for Clinical Trials, Gothenburg, Sweden; Center for Ethics, Law, and Mental Health (CELAM), Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.

Problem: The current knowledge of evidence-based design for adults is not always implemented when hospital buildings are designed. Scientific data are sparse on the effects of hospital design in pediatric settings on health outcomes in children, parents, and staff. The objective of this review is to determine the evidence-based impact of the built environment in pediatric hospital facilities on health outcomes in children, parents, and staff.

Eligibility Criteria: A systematic literature review was carried out on the electronic databases Cochrane Library, Embase, Medline and CINAHL from the period of 2008 to 2019. The review considered studies using either quantitative, qualitative, or mixed methodologies.

Sample: Out of 1414 reviewed articles the result is based on eight included articles.

Results: Two of these eight articles included health outcomes. The other six articles presented results on measures of perceptions and/or satisfaction for children, parents or staff with the built environment when transitioning to a new or renovated facility. These were generally higher for the new compared to the old facility.

Conclusions: Given the small number of studies addressing the question posed in this review, no firm conclusions can be drawn.

Implications: The review illustrates the need for more research in the pediatric setting assessing the evidence-based health outcomes of aspects of physical environmental design in pediatric hospitals or units in children, parents and staff.
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http://dx.doi.org/10.1016/j.pedn.2021.04.013DOI Listing
April 2021

The Children's Action-Reaction Assessment Tool (CARAT) as an observational technique for assessing symptom management: An initial validation study with children aged 3-7 years undergoing needle procedures.

J Spec Pediatr Nurs 2021 Apr 6:e12334. Epub 2021 Apr 6.

Institute of Health and Care Sciences and the University of Gothenburg Centre for Person-Centred Care, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.

Purpose: For many children, needle procedures are fearful events that are often painful. The first step in symptom management is to assess the child's pain and fear, and the next step is to use coping strategies to provide symptom relief for children who experience or feel pain and fear during procedures. The Children's Action-Reaction Assessment Tool (CARAT) is built on action-reaction strategies. This study aimed to determine the inter-rater reliability of the CARAT when used during needle procedures with 3- to 7-year-old children. DESIGN AND METHODS: We used a quantitative approach in which 21 children were observed by two independent observers during needle procedures to evaluate the inter-rater reliability of the CARAT. Data were analysed with descriptive statistics, and the observation scores were calculated with an intraclass correlation coefficient (ICC) test on SPSS for Windows, version 25.

Results: The completed CARAT indicated the use of action-reaction strategies. Neither action nor reaction strategies were frequently used. The parents were seldom involved in the procedure. The inter-rater reliability showed a sufficient correlation between the observers. PRACTICE IMPLICATIONS: This study showed promising results for the inter-rater reliability of the CARAT, which can be used to facilitate care for children. The observational tool can be used to assess the use of action-reaction strategies in conjunction with needle procedures in children aged 3-7 years.
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http://dx.doi.org/10.1111/jspn.12334DOI Listing
April 2021

Lowering apolipoprotein CIII protects against high-fat diet-induced metabolic derangements.

Sci Adv 2021 Mar 12;7(11). Epub 2021 Mar 12.

The Rolf Luft Research Center for Diabetes and Endocrinology, Karolinska Institutet, Karolinska University Hospital L1, SE-171 76 Stockholm, Sweden.

Increased levels of apolipoprotein CIII (apoCIII), a key regulator of lipid metabolism, result in obesity-related metabolic derangements. We investigated mechanistically whether lowering or preventing high-fat diet (HFD)-induced increase in apoCIII protects against the detrimental metabolic consequences. Mice, first fed HFD for 10 weeks and thereafter also given an antisense (ASO) to lower apoCIII, already showed reduced levels of apoCIII and metabolic improvements after 4 weeks, despite maintained obesity. Prolonged ASO treatment reversed the metabolic phenotype due to increased lipase activity and receptor-mediated hepatic uptake of lipids. Fatty acids were transferred to the ketogenic pathway, and ketones were used in brown adipose tissue (BAT). This resulted in no fat accumulation and preserved morphology and function of liver and BAT. If ASO treatment started simultaneously with the HFD, mice remained lean and metabolically healthy. Thus, lowering apoCIII protects against and reverses the HFD-induced metabolic phenotype by promoting physiological insulin sensitivity.
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http://dx.doi.org/10.1126/sciadv.abc2931DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7954448PMC
March 2021

A Systematic Review of Self-Report Instruments for the Measurement of Anxiety in Hospitalized Children with Cancer.

Int J Environ Res Public Health 2021 02 16;18(4). Epub 2021 Feb 16.

Institute of Health and Care Sciences, Centre for Person-Centred Care, Sahlgrenska Academy, University of Gothenburg, Box 457, 405 30 Gothenburg, Sweden.

Anxiety has been identified as one of the most severe and long-lasting symptoms experienced by hospitalized children with cancer. Self-reports are especially important for documenting emotional and abstract concepts, such as anxiety. Children may not always be able to communicate their symptoms due to language difficulties, a lack of developmental language skills, or the severity of their illness. Instruments with sufficient psychometric quality and pictorial support may address this communication challenge. The purpose of this review was to systematically search the published literature and identify validated and reliable self-report instruments available for children aged 5-18 years to use in the assessment of their anxiety to ensure they receive appropriate anxiety-relief intervention in hospital. What validated self-report instruments can children with cancer use to self-report anxiety in the hospital setting? Which of these instruments offer pictorial support? Eight instruments were identified, but most of the instruments lacked pictorial support. The Visual Analogue Scale (VAS) and Pediatric Quality of Life (PedsQL™) 3.0 Brain Tumor Module and Cancer Module proved to be useful in hospitalized children with cancer, as they provide pictorial support. It is recommended that faces or symbols be used along with the VAS, as pictures are easily understood by younger children. Future studies could include the adaptation of existing instruments in digital e-health tools.
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http://dx.doi.org/10.3390/ijerph18041911DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7920462PMC
February 2021

Needle-Related Pain, Affective Reactions, Fear, and Emotional Coping in Children and Adolescents With Type 1 Diabetes: A Cross-Sectional Study.

Pain Manag Nurs 2021 Feb 25. Epub 2021 Feb 25.

Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.

Background: The self-care of type 1 diabetes (T1D) includes undergoing procedures with needles several times daily, which may cause pain and fear.

Aims: The aim was to identify the degree of perceived pain, affective reactions, fear, and emotional coping among children and adolescents with T1D.

Design: A cross-sectional survey was performed.

Methods: Children and adolescents 7-18 years of age (n = 197) and their parents (n = 123) completed the Coloured Analogue Scale (CAS), the Facial Affective Scale (FAS), the Diabetes Fear of Injection Questionnaire (D-FISQ), and the Faces Emotional Coping Scale (FECS) in relation to needle procedures.

Results: The higher the values of the CAS, FAS and D-FISQ scores, the lower values for coping were reported by children and adolescents regarding treatment with insulin pen or pump, blood glucose test, and venipuncture (p < .001). Patients reported strong negative affect regarding insulin injections (35%) and blood glucose tests (32%), as well as negative affect (48%, 69%) and substantial pain (27%, 50%) for inserting a pump needle and venipuncture, respectively. Parents reported significantly higher values than children on all scales and procedures except D-FISQ (blood glucose tests) and FECS (venipuncture).

Conclusions: Children and adolescents who perceive greater pain during needle-related procedures have poorer coping ability. Pediatric diabetes teams need to identify those in need of extra support to develop pain coping strategies.
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http://dx.doi.org/10.1016/j.pmn.2021.01.007DOI Listing
February 2021

Nurses' perspectives on alternative communication strategies use in critical care units.

Nurs Crit Care 2021 Feb 24. Epub 2021 Feb 24.

Institute of Health and Care Sciences, University of Gothenburg Centre for Person-Centred Care, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.

Background: Critically ill patients have the right to communicate and participate in their treatment to avoid adverse medical outcomes due to the severity of their illness, their responsiveness, and level of consciousness. This human right has often been neglected by health care professionals, as a result of limited alternative communication support provided to patients who are unable to speak due to, for example, endotracheal intubation. Despite the successful use of alternative communication strategies in critical care units (CCUs) in other countries, limited implementation in South African hospitals has been reported.

Aims And Objectives: This study aimed to determine the perspectives of South African nurses working in CCUs on the frequency of use of alternative communication strategies to support patient-centred communication with critically ill adult patients.

Design: The study followed a quantitative non-experimental survey research design.

Methods: A total of 210 nurses working in both private and public hospitals completed a survey on their perspectives on the use of alternative communication strategies in CCUs.

Results: Nurse participants reported experience working with critically ill and communication-vulnerable patients. Nurse-patient communication mainly involved the use of pen and paper, facial expressions and gestures to obtain information relating to patients' needs and their health history. Limited use of speech-generating communication devices was reported.

Conclusion: Nurse training on the use and implementation of alternative communication strategies, such as communication boards or electronic speech-generating devices, should be investigated to improve nurses' communication with communication-vulnerable patients in South Africa.

Relevance To Clinical Practice: The results are applicable in clinical practice due to patients' need for alternative communication. The nurses mainly used low-tech solutions, which are cheap and easy to access. However, there exists an opportunity to increase the use of available digital solutions.
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http://dx.doi.org/10.1111/nicc.12612DOI Listing
February 2021

Transcultural adaptation of the children's anxiety questionnaire in Brazil.

Nurs Open 2021 Feb 21. Epub 2021 Feb 21.

Institute of Health and Care Sciences, and University of Gothenburg Centre for Person-Centred Care, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.

Aim: To describe the transcultural adaptation process of the Children's Anxiety Questionnaire (CAQ) for the Brazilian culture.

Design: This is a methodological study of cross-cultural adaptation.

Methods: Study conducted in Brazil and Sweden involved the following steps: preparation, translation, synthesis of translations, back-translation and review, and harmonization of the translations by a committee of 13 healthcare professionals using the content validity index (CVI). Cognitive debriefing, using children between 4-10 years old, was completed by 15 children to determine if the images corresponded with their meanings and 17 children to determine if they could understand the Global CAQ after listening.

Results: Convergences and discrepancies between the original instrument in Swedish, the English version and the Brazilian translation were compared. The process of culturally adapting the CAQ to Brazilian Portuguese was validated, as demonstrated by a satisfactory S-CVI (0.94) among professionals and an agreement of 95% and above by children.
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http://dx.doi.org/10.1002/nop2.794DOI Listing
February 2021

"People play it down and tell me it can't kill people, but I know people are dying each day". Children's health literacy relating to a global pandemic (COVID-19); an international cross sectional study.

PLoS One 2021 10;16(2):e0246405. Epub 2021 Feb 10.

Keele Medical School, Faculty of Medicine and Health Sciences, Keele University, Staffordshire, United Kingdom.

The aim of this study was to examine aspects of children's health literacy; the information sources they were accessing, their information preferences, their perceived understanding of and their reported information needs in relation to COVID-19. An online survey for children aged 7-12 years of age and parent/caregivers from the UK, Sweden, Brazil, Spain, Canada and Australia was conducted between 6th of April and the 1st of June 2020. The surveys included demographic questions and both closed and open questions focussing on access to and understanding of COVID-19 information. Descriptive statistics and qualitative content analysis procedures were conducted. The findings show that parents are the main source of information for children during the pandemic in most countries (89%, n = 347), except in Sweden where school was the main source of information. However, in many cases parents chose to shield, filter or adapt their child's access to information about COVID-19, especially in relation to the death rates within each country. Despite this, children in this study reported knowing that COVID-19 was deadly and spreads quickly. This paper argues for a community rather than individual approach to addressing children's health literacy needs during a pandemic.
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http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0246405PLOS
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7875343PMC
February 2021

The five aspect meal model as a conceptual framework for children with a gastrostomy tube in paediatric care.

Scand J Caring Sci 2021 Jan 29. Epub 2021 Jan 29.

Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.

Background: Cancer treatments may induce side effects and cause eating problems. A gastrostomy tube may be required in order to maintain and optimise the child's nutritional needs. Despite the use of a gastrostomy tube, it is important to maintain a natural and attractive mealtime for the child. The Five Aspect Meal Model is age neutral and originally designed to improve restaurant visits. Its five aspects conceptualise what is necessary to ensure a complete meal experience. To date, there is lack of knowledge to guided model development about mealtimes adapted to children and limited knowledge regarding mealtime experiences for children with a gastrostomy tube.

Aim: The aim was to investigate whether the Five Aspect Meal Model could be appropriate to be used for children with a gastrostomy tube in caring science and paediatric care.

Methods: The design followed steps retrieved from Renjith and colleagues. Seven interviews were performed with the Five Aspect Meal Model as a base in the interview guide. The transcripts were analysed by using a qualitative directed content analysis with a deductive approach, which finally passed into a more inductive one.

Findings: All aspects of the Five Aspect Meal Model were represented in the interviews. There were also experiences related to the gastrostomy tube and the mealtimes that did not fit into any of the five predetermined categories. As a result, the modified version was developed, an adapted prescribing practice model that includes seven aspects, whereof bodily discomfort and time for change and acceptance are specific to children with a gastrostomy tube.

Conclusion: Based on children and their parent's experiences, the Five Aspect Meal Model has been developed and adapted into a modified version, which includes seven aspects. The modified version seems to be appropriate to use within caring science and paediatric care.
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http://dx.doi.org/10.1111/scs.12957DOI Listing
January 2021

Lysosomal lipoprotein processing in endothelial cells stimulates adipose tissue thermogenic adaptation.

Cell Metab 2021 Mar 22;33(3):547-564.e7. Epub 2020 Dec 22.

Department of Biochemistry and Molecular Cell Biology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany. Electronic address:

In response to cold exposure, thermogenic adipocytes internalize large amounts of fatty acids after lipoprotein lipase-mediated hydrolysis of triglyceride-rich lipoproteins (TRL) in the capillary lumen of brown adipose tissue (BAT) and white adipose tissue (WAT). Here, we show that in cold-exposed mice, vascular endothelial cells in adipose tissues endocytose substantial amounts of entire TRL particles. These lipoproteins subsequently follow the endosomal-lysosomal pathway, where they undergo lysosomal acid lipase (LAL)-mediated processing. Endothelial cell-specific LAL deficiency results in impaired thermogenic capacity as a consequence of reduced recruitment of brown and brite/beige adipocytes. Mechanistically, TRL processing by LAL induces proliferation of endothelial cells and adipocyte precursors via beta-oxidation-dependent production of reactive oxygen species, which in turn stimulates hypoxia-inducible factor-1α-dependent proliferative responses. In conclusion, this study demonstrates a physiological role for TRL particle uptake into BAT and WAT and establishes endothelial lipoprotein processing as an important determinant of adipose tissue remodeling during thermogenic adaptation.
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http://dx.doi.org/10.1016/j.cmet.2020.12.001DOI Listing
March 2021

Children's and adolescents' experiences of living with cancer.

Nurs Child Young People 2021 May 23;33(3):10-16. Epub 2020 Nov 23.

Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden.

Background All healthcare professionals working with children should have a child-centred perspective, and should be responsive to children and adolescents who want to talk about their thoughts and feelings. The child's or adolescent's story is the starting point for mutual understanding between them and the healthcare professional, and is the basis for shared decision-making between patients and healthcare professionals in child-centred care. Aim To advance understanding of how Swedish children and adolescents with cancer perceived the effects of the disease and its treatment on their everyday life. Method Ten girls and five boys, aged between five and 18 years, with cancer were interviewed individually using four communication tools. The interviews lasted between 20 and 65 minutes and took place without their parents present. The data were analysed using content analysis. Findings Transition to an unpredictable everyday life was identified as a main theme, with five subthemes: struggling with side effects of the cancer and its treatment; treatment as an 'emotional rollercoaster'; changed self and being vulnerable; changed social life; and concerns about academic achievement. Conclusion To provide effective support and care for children and adolescents with cancer, healthcare professionals should strive to listen to them and focus on their perspectives.
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http://dx.doi.org/10.7748/ncyp.2020.e1304DOI Listing
May 2021

Children's Anxiety and Factors Related to the COVID-19 Pandemic: An Exploratory Study Using the Children's Anxiety Questionnaire and the Numerical Rating Scale.

Int J Environ Res Public Health 2020 08 9;17(16). Epub 2020 Aug 9.

Institute of Health and Care Sciences, University of Gothenburg Centre for Person-Centred Care, Sahlgrenska Academy, University of Gothenburg, 405 30 Gothenburg, Sweden.

The repercussions of the COVID-19 pandemic on children's lives deserve attention. This study aimed to assess the prevalence of anxiety among Brazilian children and its associated factors during social distancing during COVID-19. We used a cross-sectional design with an online survey from April to May 2020 in Brazil. We included children aged 6-12 years and their guardians. The Children's Anxiety Questionnaire (CAQ; scores 4-12) and the Numerical Rating Scale (NRS; scores 0-10) were used to measure anxiety. We enrolled 157 girls and 132 boys, with a mean age of 8.84 (±2.05) years; 88.9% of respondents were mothers. Based on CAQ ≥ 9, the prevalence of anxiety was 19.4% (n = 56), and higher among children with parents with essential jobs and those who were social distancing without parents. In logistic regression, the following variables were associated with higher CAQ scores: social distancing without parents; more persons living together in home; and education level of guardians. Based on NRS > 7, the prevalence of anxiety was 21.8% (n = 63); however, no associations with NRS scores were found with the investigated variables. These findings suggest the necessity of implementing public health actions targeting these parents and their children at the population level.
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http://dx.doi.org/10.3390/ijerph17165757DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7459447PMC
August 2020

Worrying About Death: An Initial Analysis of Young Adult Cancer Patients' Needs.

J Adolesc Young Adult Oncol 2021 Feb 18;10(1):105-108. Epub 2020 Jun 18.

Department of Oncology, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg Center for Person-Centered Care, University of Gothenburg, Gothenburg, Sweden.

Young adults (YAs) with cancer may have a need to develop strategies to cope with their worries about death. This brief report presents findings from a pilot study on YAs' needs with regard to such issues. An anonymous, web-based questionnaire was posted with a total of 83 cancer patients taking the questionnaire (71 females and 12 males). Almost half of the participants thought about death every day. Since most of the participants had ended their treatment, this would appear to show that matters related to death remain an important issue after the YAs' cancer treatment has ended. The results show a need for YAs to talk about death, either with professionals or with peers.
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http://dx.doi.org/10.1089/jayao.2020.0033DOI Listing
February 2021

Effects of a person-centred approach in a school setting for adolescents with chronic pain-The HOPE randomized controlled trial.

Eur J Pain 2020 09 26;24(8):1598-1608. Epub 2020 Jun 26.

Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.

Background: Chronic pain among adolescents is common but effective interventions applicable in a school setting are rare. Person-centred care (PCC) is a key factor in improving health by engaging persons as partners in their own care.

Methods: In this randomized controlled trial, a total of 98 adolescents in secondary school or upper secondary school (aged 14 - 21 years) with chronic pain were randomly assigned to a PCC intervention or standard school healthcare. In the intervention group a pain management programme, based on a PCC approach, comprising four face-to-face sessions with a school nurse over a period of 5 weeks was added to standard school healthcare. The main outcome measure was self-efficacy in daily activities (SEDA scale) and rating scales for pain intensity and pain impact were used as secondary outcome measures.

Results: At the follow-up, no significant differences were found between the groups in the SEDA scale (p = .608) or in the rating scales for pain intensity (p = .261) and pain impact (p = .836). In the sub-group analysis, a significant improvement in the SEDA scale was detected at the secondary school in favour of the PCC intervention group (p = .021).

Conclusion: In this pain management programme based on a PCC approach, we found no effect in the total sample, but the programme showed promising results to improve self-efficacy in daily activities among adolescents at secondary school.

Significance: This study evaluates the effects of a pain management programme based on a PCC approach in a school setting addressing adolescents at upper secondary and secondary schools with chronic pain. No overall effects were shown, but results illustrate that the intervention improved self-efficacy in adolescents at secondary school. Implementation of a PCC approach in a school setting may have the potential to improve self-efficacy in daily activities for adolescents with chronic pain at secondary school.
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http://dx.doi.org/10.1002/ejp.1614DOI Listing
September 2020

Multi-Children Parents' Experiences of Parental Support by Attending Parental Group for Multi-Children Parents in Sweden.

Glob Pediatr Health 2020 3;7:2333794X20908762. Epub 2020 Apr 3.

Institute of Health and Care Sciences and University of Gothenburg Centre for Person-Centred Care, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.

This study investigated multi-children parents' (MCPs) experiences of support in their parental role by participating in parental group for MCPs. Focus group interviews were performed with 20 MCPs consisting of 9 mothers and 11 fathers, with a mean number of children of 2.35 per family. Each interview lasted about 1 hour, and it was analyzed by content analysis method. One theme was revealed: parental group for MCPs gives access to reflection and development on MCP issues. This related to 2 categories: support in the MCPs' role through internal development and support in the MCPs' role through external influences. The study's conclusion highlights the support of MCPs in their parental role by attending a parental group for MCPs and should be offered to achieve empowerment. Clinical implications are that a mix of men and women with different numbers of children of various ages of siblings should compose parental groups for MCPs.
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http://dx.doi.org/10.1177/2333794X20908762DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7139177PMC
April 2020

Learning to lead: A scoping review of undergraduate nurse education.

J Nurs Manag 2020 Apr 20;28(3):756-765. Epub 2020 Feb 20.

Institute of Health and Care Sciences, University of Gothenburg Centre for Person-Centred Care, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.

Aim: To explore undergraduate student's preparation for leadership roles upon registration.

Background: Effective leadership is vital when promoting positive workplace cultures and high-quality care provision. However, newly registered nurses are not always well-prepared for leadership roles.

Evaluation: A scoping review of primary research published in English between 2009 and 2019 was undertaken. Data were analysed using an adapted version of Arksey and O'Malleys' (2005. International Journal of Social Research Methodology: Theory and Practice, 8, 19) framework. Nine papers met the review eligibility criteria.

Key Issues: Findings revealed three themes: leadership education content; positioning of leadership education within the nursing programme; and teaching and learning delivery.

Conclusions: The review highlighted some agreement about the knowledge, skills and behaviours to be addressed in leadership education. What varied more was the pedagogical methods used to deliver this, the extent of its integration throughout the programme and the nature of collaborative academic-practice working to ensure good quality clinical supervision.

Implications For Nursing Management: (a) Students must be exposed to positive leadership practices during clinical placements to facilitate theory-practice integration. (b) Bullying negatively impacts on students' self-efficacy whereas positive role modelling from registered nurses supports development of leadership competence. (c) Leadership theory and competence should be introduced early and revisited throughout the programme.
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http://dx.doi.org/10.1111/jonm.12951DOI Listing
April 2020

Paediatric palliative care: a systematic review.

BMJ Support Palliat Care 2020 Jun 13;10(2):157-163. Epub 2019 Dec 13.

Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.

Objectives: To review literature relating to evidence, context and facilitation to describe knowledge translation in paediatric palliative care. Paediatric palliative care requires competences including both paediatric specialists as well as services that are developed for this purpose, and there is a need to facilitate paediatric palliative care knowledge translation. Promoting Action on Research Implementation in the Health Services (PARiHS) is a framework for knowledge translation, which highlights the relationships between evidence, context and facilitation. PARiHS framework has been revised and updated in a new version called i-PARiHS.

Methods: The electronic databases AgeLine, CINAHL, The Cochrane Library, PsycINFO, PubMed and Scopus were searched. Papers included were limited to English and Swedish publications and restricted to publications dated between 1993 and August 2019. All types of observational and experimental studies using any research design were included.

Results And Conclusions: Thirty-eight articles were included and there was a common vision about how and when palliative care should be offered to children. The i-PARiHS was used as a lens to describe the knowledge translation in paediatric palliative care. Symptom relief was the most commonly described evidence-based strategy, and the hospital environment was the most commonly described context. Different types of education were the most commonly used strategies to facilitate knowledge translation. The results mainly focused on increasing knowledge of palliative care in paediatric care. To sum up, the results report strategies to achieve knowledge translation of paediatric palliative care, and these can be interpreted as a guideline for how this process can be facilitated.

Trial Registration Number: CRD42018100663.
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http://dx.doi.org/10.1136/bmjspcare-2019-001934DOI Listing
June 2020

How pain management for children with cerebral palsy in South African schools complies with up-to-date knowledge.

Afr J Disabil 2019 22;8(0):575. Epub 2019 Nov 22.

Centre for Augmentative and Alternative Communication, Faculty of Humanities, University of Pretoria, Pretoria, South Africa.

Background: Pain in children with cerebral palsy (CP) has its sources in musculoskeletal problems that can influence learning in a school setting. Best pain management is essential for these children, but school staff may not keep up to date with the latest developments and interventions. Therefore, staff's perceptions of beneficial strategies may not comply with contemporary scientific knowledge about effective evidence-based interventions.

Objectives: This study investigated how pain management intervention for children with CP in South African schools complied with international scientific knowledge about evidence-based interventions. The intention was to provide support for an update of knowledge on both individual level (i.e. professionals) and system level (i.e. decision makers).

Method: Five focus groups were conducted with staff members at five schools for children with special educational needs in South Africa. Manifest and latent content analyses of professional statements identified interventions reported as beneficial and related them to higher and lower levels of intervention evidence as reported at the time of data collection.

Results: Most treatment strategies concerned motor functioning that fell within the framework of physiotherapists and occupational therapists. Access to orthopaedic expertise was limited, waiting times were long and medication for spasticity treatment was not offered.

Conclusion: A discrepancy between published evidence and clinical practice for pain management in children with CP in South African school settings was noted. Suggestions for improved early intervention to identify children's hips at risk through surveillance programmes; and orthopaedic management are proposed to prevent deformities and unnecessary suffering in South African children with CP.
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http://dx.doi.org/10.4102/ajod.v8i0.575DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6890561PMC
November 2019

Dealing with adolescents' recurrent pain problems in school health care-Swedish school nurses' view.

Nurs Open 2019 Oct 11;6(4):1626-1633. Epub 2019 Sep 11.

Institute of Health and Care Sciences The Sahlgrenska Academy at University of Gothenburg Gothenburg Sweden.

Aim: To explore school nurses' strategies for supporting adolescents with recurrent pain.

Design: An explorative inductive qualitative design.

Method: Twenty-one Swedish school nurses were interviewed, and the interviews were subjected to content analysis.

Results: The findings show that the nurses are aware that recurrent pain problems are common among the adolescents. In their attempt to support these adolescents, the nurses describe how they are striving in attempts to acquire an understanding of the adolescents' situation, to understand the cause of the pain problem and to devise strategies that can be used to help the adolescents handle the situation.
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http://dx.doi.org/10.1002/nop2.371DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6805297PMC
October 2019

Development of the Help Overcoming Pain Early (HOPE) Programme Built on a Person-Centred Approach to Support School Nurses in the Care of Adolescents with Chronic Pain-A Feasibility Study.

Children (Basel) 2019 Aug 25;6(9). Epub 2019 Aug 25.

Institute of Neuroscience and Physiology, Department of Health and Rehabilitation, Sahlgrenska Academy, University of Gothenburg, 405 30 Gothenburg, Sweden.

Chronic pain and its consequences are major global health challenges, and the prevalence is increasing worldwide among adolescents. Adolescents spend most of their waking hours in school; however, there is limited research available on how school nurses can address chronic pain among adolescents in the Swedish school context. Therefore, we designed a person-centred intervention, known as Help Overcoming Pain Early (HOPE), to enable school nurses to offer adolescents strategies to manage their stress and pain. We used the Medical Research Council (MRC) framework for developing and designing this new complex intervention. For this study, we describe two of the four phases: (a) development and (b) feasibility and piloting. The final version of the HOPE programme consists of (i) an educational package for school nurses in the areas person-centred care, stress and pain education/management and gender perspective; and (ii) an intervention package for adolescents with chronic pain. The programme consists of four sessions during which adolescents with chronic pain have person-centred dialogues with a school nurse. The HOPE programme is based on the existing evidence of managing chronic pain and on the assumption that school nurses can support adolescents with chronic pain by using person-centred care.
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http://dx.doi.org/10.3390/children6090095DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6770885PMC
August 2019

Health care professional's communication through an interpreter where language barriers exist in neonatal care: a national study.

BMC Health Serv Res 2019 Aug 19;19(1):586. Epub 2019 Aug 19.

Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Arvid Wallgrens Backe, Box 457, S-405 30, Gothenburg, Sweden.

Background: A number of parents in neonatal care are foreign-born and do not speak the local language, which makes communication between healthcare professionals and parents more difficult. Interpreters can be used when language barriers exist - parent interactions, medical communication and communication about the care of the child. The aim in this study was to examine healthcare professionals' use of interpreters and awareness of local guidelines for interpreted communication in neonatal care.

Method: A survey was distributed to all 2109 employees at all 38 neonatal units in Sweden, thus to all physicians, registered nurses and nurse assistants in active service. Data were analysed with descriptive statistics and dichotomized so the professionals were compared in groups of two using the Mantel-Haenszel Chi Square test and Fisher's Non Parametric Permutation test.

Results: The survey was answered by 41% (n = 858) representing all neonatal units. The study showed a difference between the professional groups in awareness of guidelines, availability of interpreters, and individual resources to communicate through an interpreter. Nurse assistants significantly lesser than registered nurses (p < .0001) were aware of guidelines concerning the use of interpreters. In emergency communications nurse assistants used authorized interpreters to a significantly lesser extent than physicians (p < .0001) and registered nurses (p < .0001). Physicians used authorized interpreters to a significantly higher extent than registered nurses (p 0.006) and non-authorized interpreters to a significantly lesser extent than registered nurses (p 0.013). In planned communications, nurse assistants used authorized interpreters to a significantly lesser extent than physicians (p < .0001) and registered nurses (p < .0001). Nurse assistants rated their ability to communicate with parents through an interpreter to a significantly lesser extent than physicians (p 0.0058) and registered nurses (p 0.0026). No other significant differences were found.

Conclusion: The results of the study show insufficient awareness of guidelines in all neonatal units in Sweden. Clinical implications might be to provide healthcare professionals with guidelines and training clinical skills in using interpreters and increasing the availability of interpreters by having interpreters employed by the hospital.
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http://dx.doi.org/10.1186/s12913-019-4428-zDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6701045PMC
August 2019

Conditions for communication between health care professionals and parents on a neonatal ward in the presence of language barriers.

Int J Qual Stud Health Well-being 2019 Dec;14(1):1652060

a Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg , Gothenburg , Sweden.

: Family-centred neonatal care views parents and child as a unit, and aims to support each family on the basis of its specific needs. Good communication can increase parents' satisfaction and reduce tension, and is necessary to create a mutual trustful relation, but is influenced by language barriers. We aimed to describe communication between neonatal health care professionals and parents in the presence of language barriers. : A field study using a hermeneutic lifeworld approach, participative observation, and interviews with parents and health care professionals. : The main theme, , comprised three themes. meant that parents wanted to speak for themselves or call on a friend or multilingual health care professionals, in contrast to the health care professionals wish to use an interpreter. meant that some wards had access to a "cultural broker" to assist health care professionals and parents with both language translation and understanding of the Swedish health care environment. reflected varying language skills among health care professionals. The health care professionals had the power to decide the level of access to communication, and decided both the intensity and the frequency of the conversations. : Health care professionals preferred to use an interpreter when communicating with parents, while parents wished to be independent and speak for themselves. If an interpreter was used, parents preferred this to be a friend or health care professionals; this option was less popular among health care professionals.
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http://dx.doi.org/10.1080/17482631.2019.1652060DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6713095PMC
December 2019

A Person-Centred Approach When Encountering Students With Recurrent Pain: School Nurses' Experiences.

J Sch Nurs 2019 Jul 16:1059840519864158. Epub 2019 Jul 16.

6 Child Health Care and Futurum, Region Jönköping County, Barnhälsovården, Jönköping, Sweden.

Stress has a negative impact on students' daily lives and can be associated with recurrent pain. School nurses play a key role in supporting young people with stress-related pain. The purpose of this qualitative interview study was to elucidate school nurses' experiences of encountering students with recurrent pain when practicing person-centred care. The school nurses were based at public and private schools and worked with students aged 12-19. Data were collected through interviews with 18 school nurses and analyzed with deductive content analysis. The school nurses felt that actively listening to the students' narratives about daily life with recurrent pain, and co-creation of a health plan, encouraged the students to participate as partners in their own care and strengthened their relation with the students. The application of a person-centred approach in school health care meant that traditional knowledge transfer was replaced with a dialogue that reflects both the student's and school nurse's perspective.
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http://dx.doi.org/10.1177/1059840519864158DOI Listing
July 2019

Focusing on the hospital stay or everyday life with cancer: Parents' experiences of choosing a central access device for their child with cancer.

J Spec Pediatr Nurs 2019 07 8;24(3):e12261. Epub 2019 Jul 8.

Institute of Health and Care Sciences, and University of Gothenburg Centre for Person-Centred Care, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.

Purpose: The aim of this study was to gain insights into the experiences of parents of children with cancer in conjunction with their decisions on the type of central access device that their child would have.

Design And Methods: The qualitative study design was chosen to maximize the likelihood of capturing the full range of the phenomenon, that is the parents' experiences from decision-making. Open interviews were conducted between December 2015 and January 2016 with 17 parents of children who had been diagnosed with cancer in 2014-2015. The interviews were analyzed using inductive qualitative content analysis.

Results: The analysis of the decision-making process data yielded four subcategories: (a) Feeling overwhelmed owing to limited information and alienation within the healthcare system, (b) the burden of making a quick medical decision without having the big picture, (c) receiving conflicting views and approaches from the healthcare professionals, and (d) including the child's perspective. Those four subcategories were condensed into the following main category: focusing on the hospital stay and treatment or on everyday life with cancer.

Practice Implications: Healthcare professionals need to be aware that they may influence the parents' decision, and they should consider that parents are often naïve in their situation. To optimize the decision, its timing should be carefully chosen. Parents often take the child's perspective and interpret the child's reactions as reflecting a wish to avoid needle jabs or to live an unhindered everyday life. Healthcare professionals informing families about central access devices need to address both hospital stays and everyday life with cancer, and they need to adopt a child-centered approach.
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http://dx.doi.org/10.1111/jspn.12261DOI Listing
July 2019

Reducing recurrence in non-muscle-invasive bladder cancer by systematically implementing guideline-based recommendations: effect of a prospective intervention in primary bladder cancer patients.

Scand J Urol 2019 Apr - Jun;53(2-3):109-115. Epub 2019 May 8.

d Department of Urology , Landspitali University Hospital , Reykjavik , Iceland.

In non-muscle-invasive bladder cancer (NMIBC), local recurrence after transurethral resection of the bladder (TURB) is common. Outcomes vary between urological centres, partly due to the sub-optimal surgical technique and insufficient application of measures recommended in the guidelines. This study evaluated early recurrence rates after primary TURB for NMIBC before and after introducing a standardized treatment protocol. Medical records of all patients undergoing primary TURB for NMIBC in 2010 at Skåne University Hospital, Malmö, Sweden, were reviewed. A new treatment protocol for NMIBC was defined and introduced in 2013, and results documented during the first year thereafter were compared with those recorded in 2010 prior to the intervention. The primary endpoint was early recurrence at first control cystoscopy. Comparisons were made by Chi-square analysis and Fisher's exact test. Recurrence-free survival (RFS) in the two cohorts was also investigated. TURB was performed on 116 and 159 patients before and after the intervention, respectively. The early recurrence rate decreased from 22% to 9.6% ( = 0.005) at the first control cystoscopy after treatment. Residual/Recurrent tumour at the first control cystoscopy after the primary TURB (i.e. at second-look resection or first control cystoscopy) decreased from 31% to 20% ( = 0.038). The proportion of specimens containing muscle in T1 tumours increased from 55% to 94% ( < 0.001). RFS was improved in the intervention group (HR = 0.65, CI = 0.43-1.0;  = 0.05). Introduction of a standardized protocol and reducing the number of surgeons for primary treatment of NMIBC decreased the early recurrence rate from 22% to 9.6% and lowered the recurrence incidence by 35%.
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http://dx.doi.org/10.1080/21681805.2019.1604568DOI Listing
January 2020

Healthcare professionals' use of augmentative and alternative communication in an intensive care unit: A survey study.

Intensive Crit Care Nurs 2019 Oct 17;54:64-70. Epub 2019 Apr 17.

Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Box 457, 405 30 Gothenburg, Sweden. Electronic address:

Introduction: Successful communication between staff and patients plays a key role in the well-being of critically ill patients within an intensive care unit. The use of augmentative and alternative communication strategies could contribute to better pain management, medical outcomes and shorter hospital stays for patients in critical care units.

Objective: To describe healthcare professionals' use of augmentative and alternative communication strategies to communicate with critically ill patients regarding pain in an intensive care unit.

Research Method: A quantitative approach was used, and 83 healthcare professionals of different professions responded to a survey consisting of 16 items that focused on their knowledge of and access to augmentative and alternative communication strategies. The results are presented as descriptive and comparative non-parametric statistics.

Setting: The setting of the study was an intensive care unit in a Swedish hospital.

Results: All participants had experience of working in intensive care units with patients with communication challenges. Knowledge of augmentative and alternative communication tools differed between the professions, and less experienced healthcare professionals tended to administer sedative drugs more often than more experienced healthcare professionals.

Conclusion: Healthcare professionals work with vulnerable patients on a daily basis. Their knowledge of communication tools and clinical experience may influence how they communicate and treat pain in patients in intensive care units.
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http://dx.doi.org/10.1016/j.iccn.2019.04.002DOI Listing
October 2019

Development of a web-based assessment tool that evaluates the meal situation when a child has a percutaneous endoscopic gastrostomy.

BMC Pediatr 2019 03 11;19(1):76. Epub 2019 Mar 11.

Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Box 457, 405 30, Gothenburg, Sweden.

Background: Children with cancer often suffer side effects from their treatment, for example nausea and vomiting, which can lead to malnutrition. If a child cannot eat orally, a percutaneous endoscopic gastrostomy (PEG) can improve his or her well-being, psychosocial development and growth by enabling the supply of nourishment and facilitating the administration of necessary medicines. Few data exist on children's comfort when using a PEG. The aim of this study was firstly to develop three versions of a web-based assessment tool in which children, families, and healthcare professionals would be able to register their observations and assessments for evaluating the meal situation when a child has a PEG and secondly to validate the content of the tool.

Methods: A qualitative design was chosen with purposive sampling of participants. Five children with cancer, five parents, five registered nurses and five paediatricians participated first in an interview and then in a member check of the web-based tool. The data were analysed with manifest qualitative content analysis.

Results: The results highlighted four categories of issues which needed to be revised in the web-based tool: words which were difficult for the participants to understand, items which contained several questions, items which needed to be split into more items to be answerable and the layout of the questionnaire. The web-based tool was revised according to the categories, and then a member check evaluated and finally confirmed the revisions.

Conclusions: A web-based tool may be able to evaluate the meal situation when a child with cancer has a PEG. The tool may be able to detect early failures of the PEG, facilitating early action from the healthcare professionals in supporting the child and his or her parents in their care of the PEG. In the long run, this web-based tool may also be able to increase the quality of care of children living with a PEG.
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http://dx.doi.org/10.1186/s12887-019-1447-1DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6410499PMC
March 2019

Time course of decompensation after angiotensin II and high-salt diet in Balb/CJ mice suggests pulmonary hypertension-induced cardiorenal syndrome.

Am J Physiol Regul Integr Comp Physiol 2019 05 6;316(5):R563-R570. Epub 2019 Mar 6.

Integrative physiology, Department of Medical Cell Biology, Uppsala University , Uppsala , Sweden.

The genetic background of a mouse strain determines its susceptibility to disease. C57BL/6J and Balb/CJ are two widely used inbred mouse strains that we found react dramatically differently to angiotensin II and high-salt diet (ANG II + Salt). Balb/CJ show increased mortality associated with anuria and edema formation while C57BL/6J develop arterial hypertension but do not decompensate and die. Clinical symptoms of heart failure in Balb/CJ mice gave the hypothesis that ANG II + Salt impairs cardiac function and induces cardiac remodeling in male Balb/CJ but not in male C57BL/6J mice. To test this hypothesis, we measured cardiac function using echocardiography before treatment and every day for 7 days during treatment with ANG II + Salt. Interestingly, pulsed wave Doppler of pulmonary artery flow indicated increased pulmonary vascular resistance and right ventricle systolic pressure in Balb/CJ mice, already 24 h after ANG II + Salt treatment was started. In addition, Balb/CJ mice showed abnormal diastolic filling indicated by reduced early and late filling and increased isovolumic relaxation time. Furthermore, Balb/CJ exhibited lower cardiac output compared with C57BL/6J even though they retained more sodium and water, as assessed using metabolic cages. Left posterior wall thickness increased during ANG II + Salt treatment but did not differ between the strains. In conclusion, ANG II + Salt treatment causes early restriction of pulmonary flow and reduced left ventricular filling and cardiac output in Balb/CJ, which results in fluid retention and peripheral edema. This makes Balb/CJ a potential model to study the adaptive capacity of the heart for identifying new disease mechanisms and drug targets.
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http://dx.doi.org/10.1152/ajpregu.00373.2018DOI Listing
May 2019

Angiotensin II and salt-induced decompensation in Balb/CJ mice is aggravated by fluid retention related to low oxidative stress.

Am J Physiol Renal Physiol 2019 05 20;316(5):F914-F933. Epub 2019 Feb 20.

Integrative Physiology, Department of Medical Cell Biology, Uppsala University, Uppsala, Sweden.

Balb/CJ mice are more sensitive to treatment with angiotensin II (ANG II) and high-salt diet compared with C57BL/6J mice. Together with higher mortality, they develop edema, signs of heart failure, and acute kidney injury. The aim of the present study was to identify differences in renal gene regulation that may affect kidney function and fluid balance, which could contribute to decompensation in Balb/CJ mice after ANG II + salt treatment. Male Balb/CJ and C57BL/6J mice were divided into the following five different treatment groups: control, ANG II, salt, ANG II + salt, and ANG II + salt + -acetylcysteine. Gene expression microarrays were used to explore differential gene expression after treatment and between the strains. Published data from the Mouse Genome Database were used to identify the associated genomic differences. The glomerular filtration rate (GFR) was measured using inulin clearance, and fluid balance was measured using metabolic cages. Gene ontology enrichment analysis of gene expression microarrays identified glutathione transferase (antioxidant system) as highly enriched among differentially expressed genes. Balb/CJ mice had similar GFR compared with C57BL/6J mice but excreted less Na and water, although net fluid and electrolyte balance did not differ, suggesting that Balb/CJ mice may be inherently more prone to decompensation. Interestingly, C57BL/6J mice had higher urinary oxidative stress despite their relative protection from decompensation. In addition, treatment with the antioxidant -acetylcysteine decreased oxidative stress in C57BL/6J mice, reduced urine excretion, and increased mortality. Balb/CJ mice are more sensitive than C57BL/6J to ANG II + salt, in part mediated by lower oxidative stress, which favors fluid and Na retention.
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http://dx.doi.org/10.1152/ajprenal.00483.2018DOI Listing
May 2019