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  • 1.
    Agnafors, Sara
    et al.
    Linköpings universitet.
    Bladh, Marie
    Linköpings universitet.
    Ekselius, Lisa
    Uppsala universitet.
    Svedin, Carl Göran
    Ersta Sköndal Bräcke University College, Department of Social Sciences.
    Sydsjö, Gunilla
    Linköpings universitet.
    Maternal temperament and character: associations to child behavior at the age of 3 years.2021In: Child and Adolescent Psychiatry and Mental Health, E-ISSN 1753-2000, Vol. 15, no 1, article id 23Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The influence of maternal temperament on child behavior, and whether maternal temperament impact boys and girls differently is not thoroughly studied. The aim was to investigate the impact of maternal temperament and character on child externalizing and internalizing problems at age 3.

    METHODS: A birth-cohort of 1723 mothers and their children were followed from birth to age 3. At the child's age of 3 months, the mothers filled out standardized instruments on their temperament and character using the Temperament and Character Inventory (TCI) and depressive symptoms using the Edinburgh Postnatal Depression Scale (EPDS). At the child's age of 3 years, the mothers reported on child behavior using the Child Behaviour Checklist (CBCL).

    RESULTS: Maternal temperamental trait novelty seeking was positively associated with externalizing problems in the total population and in girls. Harm avoidance was positively associated with externalizing problems in the total population and in boys, and with internalizing problems in the total population and boys and girls respectively. Maternal character traits of self-directedness and cooperativeness were negatively associated with both externalizing and internalizing problems in the total population and in boys and girls respectively.

    CONCLUSIONS: Maternal character traits were more influential on child behavior than were temperamental traits, and thus the opportunities for intervention targeted at parental support are good. Maternal mental health and socioeconomic aspects also increased the risk for child behavior problems, indicating the need for recognition and support in clinical settings.

  • 2.
    Alevronta, Eleftheria
    et al.
    Göteborgs universitet.
    Skokic, Viktor
    Göteborgs universitet.
    Dunberger, Gail
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Bull, Cecilia
    Göteborgs universitet.
    Bergmark, Karin
    Göteborgs universitet.
    Jörnsten, Rebecka
    Chalmers tekniska högskola.
    Steineck, Gunnar
    Göteborgs universitet; Karolinska institutet.
    Dose-response relationships of intestinal organs and excessive mucus discharge after gynaecological radiotherapy.2021In: PLOS ONE, E-ISSN 1932-6203, Vol. 16, no 4, article id e0250004Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The study aims to determine possible dose-volume response relationships between the rectum, sigmoid colon and small intestine and the 'excessive mucus discharge' syndrome after pelvic radiotherapy for gynaecological cancer.

    METHODS AND MATERIALS: From a larger cohort, 98 gynaecological cancer survivors were included in this study. These survivors, who were followed for 2 to 14 years, received external beam radiation therapy but not brachytherapy and not did not have stoma. Thirteen of the 98 developed excessive mucus discharge syndrome. Three self-assessed symptoms were weighted together to produce a score interpreted as 'excessive mucus discharge' syndrome based on the factor loadings from factor analysis. The dose-volume histograms (DVHs) for rectum, sigmoid colon, small intestine for each survivor were exported from the treatment planning systems. The dose-volume response relationships for excessive mucus discharge and each organ at risk were estimated by fitting the data to the Probit, RS, LKB and gEUD models.

    RESULTS: The small intestine was found to have steep dose-response curves, having estimated dose-response parameters: γ50: 1.28, 1.23, 1.32, D50: 61.6, 63.1, 60.2 for Probit, RS and LKB respectively. The sigmoid colon (AUC: 0.68) and the small intestine (AUC: 0.65) had the highest AUC values. For the small intestine, the DVHs for survivors with and without excessive mucus discharge were well separated for low to intermediate doses; this was not true for the sigmoid colon. Based on all results, we interpret the results for the small intestine to reflect a relevant link.

    CONCLUSION: An association was found between the mean dose to the small intestine and the occurrence of 'excessive mucus discharge'. When trying to reduce and even eliminate the incidence of 'excessive mucus discharge', it would be useful and important to separately delineate the small intestine and implement the dose-response estimations reported in the study.

  • 3.
    Alevronta, Eleftheria
    et al.
    Göteborgs universitet.
    Skokic, Viktor
    Göteborgs universitet.
    Wilderäng, Ulrica
    Göteborgs universitet.
    Dunberger, Gail
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Sjöberg, Fei
    Göteborgs universitet.
    Bull, Cecilia
    Göteborgs universitet.
    Bergmark, Karin
    Göteborgs universitet.
    Jörnsten, Rebecka
    Karolinska institutet.
    Steineck, Gunnar
    Göteborgs universitet; Chalmers tekniska högskola.
    Dose-response relationships of the sigmoid for urgency syndrome after gynecological radiotherapy.2018In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 57, no 10, p. 1352-1358Article in journal (Refereed)
    Abstract [en]

    PURPOSE: To find out what organs and doses are most relevant for 'radiation-induced urgency syndrome' in order to derive the corresponding dose-response relationships as an aid for avoiding the syndrome in the future.

    MATERIAL AND METHODS: From a larger group of gynecological cancer survivors followed-up 2-14 years, we identified 98 whom had undergone external beam radiation therapy but not brachytherapy and not having a stoma. Of those survivors, 24 developed urgency syndrome. Based on the loading factor from a factor analysis, and symptom frequency, 15 symptoms were weighted together to a score interpreted as the intensity of radiation-induced urgency symptom. On reactivated dose plans, we contoured the small intestine, sigmoid colon and the rectum (separate from the anal-sphincter region) and we exported the dose-volume histograms for each survivor. Dose-response relationships from respective risk organ and urgency syndrome were estimated by fitting the data to the Probit, RS, LKB and gEUD models.

    RESULTS: The rectum and sigmoid colon have steep dose-response relationships for urgency syndrome for Probit, RS and LKB. The dose-response parameters for the rectum were D50: 51.3, 51.4, and 51.3 Gy, γ50 = 1.19 for all models, s was 7.0e-09 for RS and n was 9.9 × 107 for LKB. For Sigmoid colon, D50 were 51.6, 51.6, and 51.5 Gy, γ50 were 1.20, 1.25, and 1.27, s was 2.8 for RS and n was 0.079 for LKB.

    CONCLUSIONS: Primarily the dose to sigmoid colon as well as the rectum is related to urgency syndrome among gynecological cancer survivors. Separate delineation of the rectum and sigmoid colon in order to incorporate the dose-response results may aid in reduction of the incidence of the urgency syndrome.

  • 4.
    Amsberg, Susanne
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Wijk, Ingrid
    Sophiahemmet högskola.
    Livheim, Fredrik
    Karolinska Institutet.
    Toft, Eva
    Karolinska Institutet; Ersta sjukhus.
    Johansson, Unn-Britt
    Sophiahemmet högskola; Södersjukhuset.
    Anderbro, Therese
    Karolinska institutet; Stockholms universitet.
    Acceptance and commitment therapy (ACT) for adult type 1 diabetes management: Study protocol for a randomised controlled trial2018In: BMJ Open, E-ISSN 2044-6055, Vol. 8, no 11, p. 1-8, article id e022234Article in journal (Refereed)
    Abstract [en]

    INTRODUCTION: Integrating diabetes self-management into daily life involves a range of complex challenges for affected individuals. Environmental, social, behavioural and emotional psychological factors influence the lives of those with diabetes. The aim of this study is to evaluate the impact of a stress management group intervention based on acceptance and commitment therapy (ACT) among adults living with poorly controlled type 1 diabetes.

    METHODS AND ANALYSIS: This study will use a randomised controlled trial design evaluating treatment as usual (TAU) and ACT versus TAU. The stress management group intervention will be based on ACT and comprises a programme divided into seven 2-hour sessions conducted over 14 weeks. A total of 70 patients who meet inclusion criteria will be recruited over a 2-year period with follow-up after 1, 2 and 5 years.The primary outcome measure will be HbA1c. The secondary outcome measures will be the Depression Anxiety Stress Scales, the Swedish version of the Hypoglycemia Fear Survey, the Swedish version of the Problem Areas in Diabetes Scale, The Summary of Self-Care Activities, Acceptance Action Diabetes Questionnaire, Swedish Acceptance and Action Questionnaire and the Manchester Short Assessment of Quality of Life. The questionnaires will be administered via the internet at baseline, after sessions 4 (study week 7) and 7 (study week 14), and 6, 12 and 24 months later, then finally after 5 years. HbA1c will be measured at the same time points.Assessment of intervention effect will be performed through the analysis of covariance. An intention-to-treat approach will be used. Mixed-model repeated measures will be applied to explore effect of intervention across all time points.

    ETHICS AND DISSEMINATION: The study has received ethical approval (Dnr: 2016/14-31/1). The study findings will be disseminated through peer-reviewed publications, conferences and reports to key stakeholders.

    TRIAL REGISTRATION NUMBER: NCT02914496; Pre-results.

  • 5.
    Andersson, Hedvig
    et al.
    Linköpings universitet.
    Aspeqvist, Erik
    Linköpings universitet.
    Dahlström, Örjan
    Linköpings universitet.
    Svedin, Carl Göran
    Marie Cederschiöld University, Department of Social Sciences.
    Jonsson, Linda S.
    Marie Cederschiöld University, Department of Social Sciences.
    Landberg, Åsa
    Marie Cederschiöld University, Department of Social Sciences.
    Zetterqvist, Maria
    Universitetssjukhuset i Linköping.
    Emotional Dysregulation and Trauma Symptoms Mediate the Relationship Between Childhood Abuse and Nonsuicidal Self-Injury in Adolescents2022In: Frontiers in Psychiatry, E-ISSN 1664-0640, Vol. 13, article id 897081Article in journal (Refereed)
    Abstract [en]

    Background: Nonsuicidal self-injury (NSSI) is common in adolescents. Emotion dysregulation has been identified as a core mechanism in the development and maintenance of NSSI and it is therefore an important target when addressing NSSI. The pathogenic connection between different kinds of childhood abuse, difficulties in emotion regulation and NSSI needs further investigation. The objective of this study was to examine whether difficulties with emotion regulation and trauma symptoms, separately and together, mediate the relationships between sexual, physical and emotional abuse and NSSI.

    Method: Cross-sectional data was collected from 3,169 adolescent high-school students aged 16–19 years (M = 18.12, SD = 0.45). Data from self-reported experiences of childhood abuse, current difficulties with emotion regulation (measured with the Difficulties with Emotion Regulation Scale, DERS-16) and trauma symptoms (measured with the Trauma Symptom Checklist for Children, TSCC), and NSSI were collected. Structural Equation Modeling (SEM) was used to test the proposed relationships between variables.

    Results: The prevalence of life-time NSSI was 27.4%. Prevalence of reported childhood abuse was 9.2, 17.5, and 18.0% for sexual, physical, and emotional abuse, respectively. Childhood abuse, difficulties with emotion regulation and trauma symptoms exhibited significant positive associations with NSSI in adolescents. Emotional dysregulation and trauma symptoms were both found to mediate the relationship between childhood abuse and NSSI. Latent variable models were found to fit data well.

    Conclusion: Results indicate that increased levels of emotional dysregulation and trauma symptoms in relation to childhood abuse contribute to the increased risk of NSSI. Further, results point to some aspects of emotional dysregulation and trauma symptoms being more important in this regard. Clinical implications are discussed.

  • 6.
    Arnberg, Filip K.
    et al.
    Uppsala universitet.
    Bondjers, Kristina
    Uppsala universitet.
    Sveen, Josefin
    Uppsala universitet.
    Panel discussion: early interventions after traumatic events2015In: European Journal of Psychotraumatology, ISSN 2000-8198, E-ISSN 2000-8066, Vol. 6, article id 28636Article in journal (Other academic)
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  • 7.
    Backman, Ellen
    Högskolan i Halmstad, Centrum för forskning om välfärd, hälsa och idrott (CVHI).
    Ordinary mealtimes under extraordinary circumstances: Routines and rituals of nutrition, feeding and eating in children with a gastrostomy and their families2021Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    The aim of this thesis is to explore routines and rituals related to feeding, eating, and mealtimes in families that have a child with a gastrostomy tube (G-tube), from the perspectives of healthcare professionals, the children, and their parents. The thesis is based on four empirical studies. Study I is a longitudinal, quantitative study with the aim to describe children with developmental or acquired disorders receiving a G-tube, and to compare characteristics, contacts with healthcare professionals, and longitudinal eating outcomes. Findings from Study I demonstrated that children with developmental disorders needed G-tube feeding for longer than children with acquired disorders. Children with developmental disorders were also younger at G-tube placement, and had more multidisciplinary healthcare. These findings led to the subsequent studies focused specifically on children with developmental disorders. 

    Study II applies mixed methods and explores everyday life, health care, and intervention goals during the first year following G-tube placement through the documentation in medical records. In Studies III and IV, the experiences of family mealtimes for children with a G-tube and their parents are collected through individual interviews that are analysed qualitatively. Triangulation of methods, participants, researchers, and data across the four studies is applied to search for confirmation between findings, as well as to identify areas of discrepancy. Ecocultural theory, the WHO framework ICF, and the concept of participation form the conceptual framework of the thesis. Taken together, findings from the studies describe how the main experiences of feeding, eating, and mealtime relate to specific impairments of the child, the collective value attached to family mealtimes, and the parental responsibility to harmonise competing interests and conflicts among family members and/or healthcare professionals. 

    This thesis extends previous research by focusing on the ecocultural context of the child in combination with a dimensional understanding of health. The findings shed light on measures taken by the families themselves to adjust to and handle their daily lives, as well as spell out areas where more support is needed. Furthermore, this thesis suggests that an expanded focus on children’s participation in everyday mealtimes, and in the healthcare follow-up of G-tube feeding, is important in enhancing intervention outcomes.

  • 8.
    Backman, Ellen
    et al.
    Högskolan i Halmstad, Centrum för forskning om välfärd, hälsa och idrott (CVHI).
    Granlund, Mats
    Jönköping University, Jönköping, Sweden.
    Karlsson, Ann-Kristin
    Region Halland, Kungsbacka, Sweden.
    Parental Perspectives on Family Mealtimes Related to Gastrostomy Tube Feeding in Children2021In: Qualitative Health Research, ISSN 1049-7323, E-ISSN 1552-7557, Vol. 31, no 9, p. 1596-1608Article in journal (Refereed)
    Abstract [en]

    Built on the important functions daily routines serve families and child health, this study aimed to explore parents’ descriptions of mealtimes and food-related challenges when living with a child using a gastrostomy feeding tube. The study was informed by ecocultural theory and based on in-depth interviews combined with stimulated recall. The interviews of 10 parents were inductively analyzed by means of qualitative content analysis. Four main categories comprised the parents’ descriptions: “One situation, different functions,” “On the child’s terms,” “Doing something to me,” and “An unpredictable pattern,” with one overarching theme. The analyses showed that the parents strived to establish mealtimes in line with their cultural context, although they struggled to reach a point of satisfaction. The study highlights the importance of health care professionals to address the medical aspects of caring for a child with a G-tube, but also the potential psychological and social consequences for ordinary family life. © The Author(s) 2021.

  • 9.
    Backman, Ellen
    et al.
    Högskolan i Halmstad, Centrum för forskning om välfärd, hälsa och idrott (CVHI).
    Karlsson, Ann-Kristin
    Department of Research and Development, Region Halland, Halmstad, Sweden.
    Sjögreen, Lotta
    Mun-H-Center Orofacial Resource Center for Rare diseases, Gothenburg, Sweden.
    The use of gastrostomy in Swedish children – indications, and trends between 2005 and 20152017Conference paper (Refereed)
    Abstract [en]

    Children with complex medical needs requiring nutritional support are growing in number. This presentation will add new knowledge regarding gastrostomy in children by reporting primary diagnosis, and indications for the use of gastrostomy. Furthermore, the presentation will discuss and analyse data evolution trends from 2005 to 2015 in Sweden.

    Methods: The first part of the study used national statistics to provide a broad picture of gastrostomy use in Swedish children. The second part applied a retrospective observational study design, reviewing medical charts in order to obtain an in-depth picture of the children in need for gastrostomy, and its use in a five-year perspective.

    Results: The number of gastrostomy cases recorded in the national database was 3 946, 53% male, and 47% female. The distribution of age groups was: 0-4 years: 61% , 5-9 years: 17%, 10-14 years: 12%, and 15-19: years 10%.  When observing trends on a national level, the number of children receiving gastrostomy increased in average by 13% per year. Changes in the separate age groups were analysed. An increase was noted for children aged 0-4 years and for children aged 5-9 years. In the age groups 10-14 years and 15-19 years, there was no progressive increase. The results from the national statistics database will be discussed in relation to the medical chart-analyses of 75 children receiving gastrostomy in one Swedish administrative region between 2005 and 2015. 

    Conclusions: As in many parts of Europe, the number of children in need for gastrostomy is also growing in Sweden, with the youngest children seeming to be the group increasing most.

    Clinical implications: Nutritional support in Sweden is publicly financed, therefore these findings may be useful when planning both monetary and human resources in meeting the future challenges of paediatric health care.

  • 10.
    Backman, Ellen
    et al.
    Högskolan i Halmstad, Centrum för forskning om välfärd, hälsa och idrott (CVHI).
    Sjögreen, Lotta
    Orofacial Resource Centre for Rare Diseases, Public Dental Service, Mun-H-Center, Gothenburg, Sweden; Department of Health and Rehabilitation, Institute of Neuroscience and Physiology, Sahlgrenska Academy, Gothenburg, Sweden.
    Gastrostomy tube insertion in children with developmental or acquired disorders: a register-based study2020In: Developmental Medicine & Child Neurology, ISSN 0012-1622, E-ISSN 1469-8749, Vol. 62, no 10, p. 1191-1197Article in journal (Refereed)
    Abstract [en]

    AIM To describe trends in gastrostomy tube insertion in children with developmental or acquired disorders in Sweden and assess their demographic characteristics.

    METHOD Children aged 0 to 18 years with gastrostomy tube insertions recorded between 1998 and 2014 were identified in the Swedish National Patient Register. Associations between disorder type and year of surgery, as well as age at surgery, were analysed using linear regression analyses. The association between disorder type and mortality 2 years from gastrostomy tube insertion was also analysed using logistic regression analysis.

    RESULTS The data for 4112 children (2182 males, 1930 females), with a median age of 2 years (interquartile range=1–8y), were analysed. Children who presented with developmental disorders were the largest group (n=3501, 85%). The most common diagnosis in children with developmental disorders was cerebral palsy (n=165, 4%). In children with acquired disorders, acute lymphoblastic leukaemia (n=117, 3%) was the most common diagnosis. Gastrostomy tube insertions increased from 1998 to 2014, with the greatest increase in children with developmental disorders, who were younger than children with acquired disorders when the gastrostomy tube was first inserted. Age at tube insertion decreased inboth groups during the study period. Mortality was higher in children with acquired disorders, suggesting that gastrostomy tube insertion should be part of a palliative care approach.

    INTERPRETATION Child characteristics differed depending on whether the underlying disorder was developmental or acquired, suggesting a need for clinical health care guidelines related to the specific goals of gastrostomy tube insertion.

  • 11.
    Bartholdson, Cecilia
    et al.
    Karolinska Institutet; Karolinska Universitetssjukhuset.
    Kreicbergs, Ulrika
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska Institutet.
    Sveen, Josefin
    Uppsala universitet.
    Lövgren, Malin
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska Universitetssjukhuset.
    Pohlkamp, Lilian
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Communication about diagnosis and prognosis: A population-based survey among bereaved parents in pediatric oncology2022In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 31, no 12, p. 2149-2158Article in journal (Refereed)
    Abstract [en]

    INTRODUCTION: When a child is diagnosed with cancer, the whole family is affected, and parents struggle to grasp challenging information regarding diagnosis and prognosis. Most parents and children want honest communication and openness, yet this remains a complex and challenging task for healthcare professionals.

    OBJECTIVES: To describe bereaved mothers' and fathers' reports of communication of their child's cancer diagnosis and when the illness became incurable.

    METHODS: Data from a Swedish population-based survey conducted in 2016, including 135 mothers and 97 fathers who had lost a child to cancer 1-5 years earlier, were studied regarding the parents' reports of communication about their child's illness.

    RESULTS: A vast majority of parents wants information when their child's illness becomes incurable, and this need is generally met. However, fathers to a lesser extent than mothers, reported that they were informed about it. According to parents' reports 87 % of children received diagnostic information and 44 % of the children received prognostic information.

    CONCLUSION: A vast majority of both mothers and fathers would like to know when their child's illness becomes incurable, yet it remains unknown to what extent they want their child to be informed. This article is protected by copyright. All rights reserved.

  • 12.
    Belca, Spela
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences.
    Barosen, Camilla
    Ersta Sköndal University College, Department of Health Care Sciences.
    Upplevelser av att leva med schizofreni2011Independent thesis Basic level (degree of Bachelor), 10 credits / 15 HE creditsStudent thesis
    Abstract [sv]

    Bakgrund: Schizofreni är en allvarlig psykisk sjukdom kännetecknad av svikt i kognitiva och sociala förmågor. Det råder otillräckliga kunskaper i bemötandet av personer med schizofreni. Deras subjektiva upplevelser blir oftast åsidosatta fastän de spelar en viktig roll i vården och personers liv. En bättre förståelse för personers subjektiva dimensionen kan bidra till ett bättre bemötande och minska lidande för personer med schizofreni.

    Syfte: Syftet för denna studie är att undersöka subjektiva upplevelser hos personer med schizofreni.

    Metod: Nio kvalitativa artiklar som hittades i databaserna PsycINFO och CINAHL bearbetades med metasyntes, gemensamma teman kunde identifieras.

    Resultat: Personer med schizofreni upplever en komplex blandning av upplevelser såsom tillbakadragande, ensamhet, relationsproblem, hopplöshet, kaos och förvirring som effekter av sjukdomen. Trygghet och gemenskap kan bidra till en positiv utveckling av hälsoprocesserna.

    Diskussion: Livsvärlden ligger till grund för hur personer med schizofreni upplever sin sjukdom och livssituation. Upplevelser av negativa symtom hos personer med schizofreni kräver mer forskning. Bemötandet av personer med schizofreni kan genom fortsatt forskning och utbildning förbättras.

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    Upplevelser av att leva med schizofreni
  • 13. Bergquist, M.
    et al.
    Sveen, Josefin
    Huss, Fredrik
    Sjöberg, Folke
    Willebrand, Mimmie
    Psychological health and appearance after burns in children and adolescents aged 5-182010Conference paper (Refereed)
  • 14.
    Bodin, Maria C.
    et al.
    Karolinska institutet.
    South, Sandra H.
    Socialstyrelsen.
    Ingemarson, Maria
    Karolinska institutet.
    A Quasi-Randomized Trial of a School-Wide Universal Prevention Program: Results and Lessons Learned2016In: Scandinavian Journal of Educational Research, ISSN 0031-3831, E-ISSN 1470-1170, Vol. 60, no 4, p. 449-476Article in journal (Refereed)
    Abstract [en]

    Prevention in School (PS) is a comprehensive program which aims to improve the learning climate and reduce problem behavior in elementary schools. Core components are teaching of school rules, praise and rewards to support prosocial behavior, and a forum involving parents. This trial investigated the effects of PS on its intended outcomes, and includes 23 schools, 3,207 students, and 188 teachers. Multilevel regression analyses indicated no program effects two years after the start of the program. Problems with program components, implementation and study limitations may have contributed to the null findings. The lessons learned may be used to guide program revisions, and are important to consider in future attempts to implement and evaluate similar school interventions in a Swedish context.

  • 15.
    Bondjers, Kristina
    et al.
    Uppsala universitet.
    Sveen, Josefin
    Uppsala universitet.
    Willebrand, Mimmie
    Uppsala universitet.
    Psychometric Properties of the PTSD Checklist for DSM-5 in parents to children with burns (018)2015Conference paper (Refereed)
    Abstract [en]

    Introduction Symptoms of post-traumatic stress disorder (PTSD) is a common problem among parents of children with burns. However, there is a paucity of evaluated screening tools for this population. The aim was to evaluate the psychometric properties of the PTSD Checklist (PCL), which is recently revised in accordance to the Diagnostic and statistical manual of mental disorders, 5th ed.  

    Methods The participating parents (N= 62, mean age= 38) completed self-report questionnaires 0.8-5.6 years after their child’s burn. Measures were the PCL-5 (consisting of four subscales; Intrusion, Avoidance, Negative alterations in cognitions and mood, and Arousal and reactivity), the Impact of Event Scale-Revised (with three subscales; Intrusion, Avoidance and Hyperarousal) and the Perceived Stress Scale. The children had a TBSA burned ranging from 1 to 31 % and were 0.1-15.0 years of age at injury.

    Results The average PCL-5 scores were low to moderate and indicated that no parent was above the recommended preliminary cut off of 38 for PTSD. Cronbach’s alpha values were acceptable and varied between 0.56 and 0.77 for the four PCL-5 subscales and mean inter-item correlations ranged from 0.22 to 0.73. The PCL-5 subscales were positively correlated with the corresponding IES-R subscales as well as the total PSS score (p<.05). There were no associations between the PCL-5 and  burn severity (TBSA, TBSA-FT, and LOS), time since injury, child age or gender, or parent gender. 

    Conclusion In conclusion, the PCL-5 had high internal consistency and evaluation of concurrent validity suggested moderate associations with other measures of traumatic stress and perceived stress as expected. The moderate associations with other measures of stress is to be expected, taking into account the slightly different constructs targeted by the three measures in this study. This first study suggests that the PCL-5 is a psychometrically sound instrument that deserves further evaluation as a screening tool for parents of children with burns.

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    fulltext
  • 16.
    Bülow, Johanna
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences.
    Volkova, Galina
    Ersta Sköndal University College, Department of Health Care Sciences.
    Vem vårdar vårdaren?: Närståendes upplevelser av att vårda en äldre person palliativt i hemmet2011Independent thesis Basic level (degree of Bachelor), 10 credits / 15 HE creditsStudent thesis
    Abstract [sv]

    Bakgrund: När allt fler lever längre ökar sannolikheten att möta livets slut vid en hög ålder. Att dö i hemmet är ett önskemål hos många personer i livets slut och deras närstående. Allt fler personer i livets slut vårdas i dag i hemmet och det är troligt att denna trend kommer att öka i framtiden. När palliativ vård utförs i hemmet förutsätter det ofta att det finns en närstående som kan fungera som vårdare. Konfronterandet med döden innebär vanligtvis en svår livssituation, som kan vara den närståendes första riktiga möte med döden. I detta påfrestande läge har den närstående ett stort behov av stöd från och god kommunikation med den professionella vården, då en god vård av den sjuke förutsätter att den närstående får ett professionellt stöd. För att kunna ge de närstående stöd är det viktigt att sjuksköterskan har förståelse för deras upplevelser.

    Syfte: Syftet är att beskriva närståendes upplevelser av att vårda en äldre person palliativt i hemmet.

    Metod: En litteraturstudie där totalt åtta kvalitativa och kvantitativa vetenskapliga artiklar relevanta för syftet analyserats. Fribergs kvalitativa analysmodell (2006) har använts för att identifiera kategorier.

    Resultat: Sju kategorier framkom ur analysen: upplevelsen av att se den sjuke förändras, önskan att vara tillräcklig och bidra, upplevelsen av de professionellas svek, strävan efter hopp och mening, upplevelsen av ansträngning, upplevelsen av brist på kontroll och betydelsen av familj och vänner.

    Diskussion: I diskussionen relateras centrala delar av resultatet till Travelbees teori om mellanmänskliga aspekter. Upplevelsen av de professionellas svek, strävan efter hopp och mening samt upplevelsen av lidande diskuteras. Även viktiga aspekter som sjuksköterskan bör tänka på diskuteras.

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    Vem vårdar vårdaren
  • 17.
    Carlsson, E
    et al.
    Göteborgs universitet.
    Pettersson, M
    Göteborgs universitet.
    Öhlén, J
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Göteborgs universitet.
    Sawatzky, R
    Trinity Western University, Canada; Providence Health Care, Canada.
    Smith, F
    Göteborgs universitet.
    Friberg, F
    Göteborgs universitet; University of Stavanger, Norway.
    Development and validation of the preparedness for Colorectal Cancer Surgery Questionnaire: PCSQ-pre 242016In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 25, p. 24-32, article id S1462-3889(16)30081-3Article in journal (Refereed)
    Abstract [en]

    PURPOSE: The aims of the study were to develop and psychometrically evaluate a patient-reported outcome instrument for the measurement of preoperative preparedness in patients undergoing surgery for colorectal cancer.

    METHODS: This study was conducted in two stages: a) instrument development (item generation, construction of items and domains), empirical verification and b) instrument evaluation. A questionnaire with 28 items measuring preparedness for surgery was developed covering four domains and was tested for content validity with an expert panel and with patients. Psychometric testing of the questionnaire was conducted on 240 patients undergoing elective surgery for colorectal cancer.

    RESULTS: The scale content validity index of the preparedness items was 0.97. The final version consisted of 24 items measuring 4 subscales: Searching for and making use of information, Understanding and involvement in the care process, Making sense of the recovery process and Support and access to medical care. Confirmatory factor analysis revealed good model fit with standardized factor loadings ranging from 0.58 to 0.97. A well-fitting second-order factor model provided support for a total preparedness score with second-order factor loadings ranging from 0.75 to 0.93. The ordinal alpha values of the four latent factors ranged from 0.92 to 0.96, indicating good internal consistency. The polyserial correlations with the total score were 0.64 (p < 0.01) for the overall preparedness question and 0.37 (p < 0.01) for overall well-being.

    CONCLUSION: The Swedish Preparedness for Colorectal Cancer Surgery Questionnaire for use in the preoperative phase demonstrated good psychometric properties based on a sound conceptualization of preparedness.

  • 18.
    Cosmo, Emelie
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences.
    Enquist, Mari
    Ersta Sköndal University College, Department of Health Care Sciences.
    Trycksår: Sjuksköterskans kunskap, attityd och det praktiska utförandet2012Independent thesis Basic level (degree of Bachelor), 10 credits / 15 HE creditsStudent thesis
    Abstract [en]

    Background: A health damage that has been specifically related to nursing is pressure ulcers. Pressure ulcers are a complication caused by disease, care and treatment and can result in great suffering for the patient. Pressure ulcers can affect people both physically and psychosocially and is experienced, by most patients, as a serious and unnecessary complication of care. Today there are hundreds of identified risk factors for pressure ulcers described that can be divided into patient and care-related risk factors. A successful pressure ulcer prevention and treatment is to reduce or eliminate the underlying causes for the development of pressure ulcers, prevent deterioration and to treat existing ulcers. To prevent the occurrence of pressure ulcers and heal them, nurses’ knowledge and skills become important.

     

    Aim: The aim was to describe the nurses´ knowledge and attitude towards pressure ulcer prevention and treatment and how it affects the practice.

     

    Methods: The study was conducted as a literature study and was based on Willman, Stoltz och Bahtsevani (2011) methodology for reviewing scientific articles. 12 articles were chosen, three of which were qualitative, eight quantitative and one quantitative and qualitative. The analyze was conducted by Fribergs (2012) analysis regarding qualitative and quantitative research.

     

    Results: The result are presented under the four headings: Differences in nurses’ knowledge, Either you love pressure ulcers or you hate them, Lack of access to training, despite its positive impact, The attitude has a greater impact on the practice than knowledge.

     

    Discussions: The results were discussed based on the concept of health care environment, where the focus was directed towards a psychosocial component. Areas addressed include lack of access to education on pressure ulcers and what it can lead to, how the nurses’ negative attitude affect the practice and finally discussed the need to further examine of how nurses' attitudes can be improved and how they can be inspired to a greater interest in their work with pressure ulcers.

     

    Keywords: Pressure ulcer, Nurse, Prevention, Treatment, Knowledge, Attitude, Practice, Patient safety, Health care environment

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    Trycksår: Sjuksköterskans kunskap, attityd och det praktiska utförandet
  • 19.
    Doveson, Sandra
    Sophiahemmet högskola.
    Experiences of Living with, and Undergoing Life-prolonging Treatment of, Metastatic Castration-resistant Prostate Cancer: A Qualitative Study2015Conference paper (Refereed)
    Abstract [en]

    Prostate cancer is the most common form of cancer amongst men in both Sweden and Europe. Once the disease has metastasised, and is no longer sensitive to hormonal (castration) therapy, it is considered incurable. However, since a few years back men at this stage of the disease have the opportunity to undergo different life-prolonging treatments. The knowledge about the effect of these treatments on different patient-reported outcome measures is very limited. Thus, the aim of this study was to, based on men’s experiences of living with, and undergoing life-prolonging treatment of, metastatic castration-resistant prostate cancer (mCRPC), identify issues and matters of importance and significance to this group. The study also includes an evaluation of a questionnaire intended for use in a larger prospective research project including men in the corresponding situation.

    The study was conducted with qualitative design. Data was collected through nine interviews; five were semistructured and four were carried out with think-aloud methodology. The content of the interviews revolved around the questionnaire, as well as the participants’ situation living with and undergoing treatment of mCRPC. Data was analysed using qualitative content analysis. In conclusion, the result indicates that living with and undergoing life-prolonging treatment of mCRPC could mean living in a world of uncertainty and change. This could be manifested in various ways, with physical, psychological, emotional, social and existential consequences. Information, knowledge and participation in decision-making appeared to be of importance. The complexity of these men’s situations puts demands on health care, where a holistic view of the patient, continuity and trust were described as essential. The result was applied in the completion of the research project questionnaire.

    The study was carried out with financial support from Sophiahemmet reseach fundings and County council of Sörmland.

  • 20.
    Doveson, Sandra
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Sophiahemmet högskola.
    Holm, M
    Axelsson, L
    Fransson, P
    Wennman-Larsen, A
    Men´s expectations on life-prolonging treatment of advanced, incurable prostate cancer2018Conference paper (Other academic)
  • 21.
    Doveson, Sandra
    et al.
    Sophiahemmet högskola.
    Holm, M
    Fransson, P
    Wennman-Larsen, A
    Jämförelse av livskvalitet, symtom och funktion mellan två matchade grupper av män med prostatacancer som utvecklar metastaser och män med prostatacancer som inte utvecklar metastaser: En prospektiv långtidsuppföljning2020Conference paper (Other academic)
  • 22.
    Doveson, Sandra
    et al.
    Sophiahemmet högskola.
    Holm, M
    Fransson, P
    Wennman-Larsen, A
    Mäns förväntningar på livsförlängande behandling av spridd, obotlig prostatacancer2018Conference paper (Other academic)
  • 23.
    Ehrén, Ingrid
    et al.
    Rehab Station Stockholm; Karolinska universitetssjukhuset; Karolinska institutet.
    Hagman, Göran
    Karolinska institutet.
    Lindbo, Lena
    Rehab Station Stockholm.
    Gabrielsson, Hanna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Rehab Station Stockholm; Örebro universitet.
    Bendt, Martina
    Rehab Station Stockholm; Karolinska Institutet .
    Seiger, Åke
    Rehab Station Stockholm; Karolinska institutet.
    Cognitive challenges in persons with spina bifida: Bearing on urological dysfunctions?2020In: Neurourology and Urodynamics, ISSN 0733-2467, E-ISSN 1520-6777, Vol. 39, no 8, p. 2139-2145Article in journal (Refereed)
    Abstract [en]

    AIM: To evaluate if adult persons with spina bifida (SB) who have urinary tract complications have cognitive difficulties that can be identified by neuropsychological tests.

    METHODS: All individuals with SB ≥ 18 years of age registered at a regional outpatient clinic (n = 219) were invited, of which, 154 persons were included. Neuropsychological assessment of their cognitive status was performed with Wechsler Adult Intelligence Scale®-Fourth Edition: Coding, Block design, Arithmetic's, FAS (word generation), Rey Auditory Verbal Test for learning, and delayed recall 30 min. Bladder and bowel function were assessed with questions used by the Nordic Spinal Cord Injury Registry (NSCIR) in structured interviews, by questionnaires, and by chart reviews.

    RESULTS: Average neuropsychological test results for this SB population was shown to be approximately 1 SD under the median for the general population. The Coding test showed significantly lower test results as compared with the whole SB group in persons with urinary tract complications, especially urinary tract infections, reduced kidney function, dependent emptying of the bladder, and the bowel and accidental bowel leakage. The Arithmetic's test showed a significant difference between subgroups in all parameters except reduced kidney function whereas the other neuropsychological tests were significantly correlated with some but not all urological parameters.

    CONCLUSION: We propose neuropsychological testing with primarily two tests to find those persons with SB who, due to cognitive challenges, might need extra support to minimize urological complications.

  • 24.
    Ehrén, Ingrid
    et al.
    Rehab Station Stockholm; Karolinska universitetssjukhuset; Karolinska institutet.
    Lindbo, Lena
    Rehab Station Stockholm.
    Gabrielsson, Hanna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Rehab Station Stockholm; Örebro universitet.
    Bendt, Martina
    Rehab Station Stockholm; Karolinska institutet.
    Seiger, Åke
    Rehab Station Stockholm; Karolinska Institutet.
    Voiding conditions, renal and bowel function in a cohort of adults with spina bifida2020In: Neurourology and Urodynamics, ISSN 0733-2467, E-ISSN 1520-6777, Vol. 39, no 6, p. 1796-1802Article in journal (Refereed)
    Abstract [en]

    AIM: To map voiding patterns, degree of continence, use of drugs for voiding disorders, kidney function and surgical interventions but also the bowel function in a near-total regional cohort of adults with spina bifida aged more than or equal to 18 years.

    METHODS: All individuals more than or equal to 18 years of age with spina bifida registered at a regional outpatient clinic (n = 219) were invited to participate, of which 196 persons were included. Bladder and bowel function were assessed according to questions used by the Nordic Spinal Cord Injury Registry by structured interviews and questionnaires in combination with review of patient charts including kidney function.

    RESULTS: Twenty percent of the patients voided spontaneously. Fifty-four percent used clean intermittent catherization (CIC) and of these, 14% had also undergone augmentation of the bladder and/or implantation of an artificial sphincter or sling, 23% had undergone major urological surgery, and 3% had an indwelling catheter. Seventeen percent of patients voiding spontaneously or using CIC reported total continence but as many as 36% reported daily leakage. Anticholinergics was the most common drug, used by 21% in the total cohort. About 13% of the patients had a reduced kidney function but only 1.5% had end stage renal failure. Seventy-three percent had problems emptying the bowel and 18% experienced fecal leakage weekly or even daily.

    CONCLUSION: We found a large variation in problems with bladder and bowel function in this adult group of persons with spina bifida. A structured customized program for follow-up seems necessary to optimize their health status in these areas.

  • 25.
    Eilertsen, M.E
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Norway.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Wallin, A.E
    Högskolan Dalarna.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    The Voices of Cancer-Bereaved Siblings: A Nation-Wide Long-Term Follow-up2018In: Pediatric blood & cancer: Supplement: Abstracts from the 50th Congress of the International Society of Paediatric Oncology (SIOP) Kyoto, Japan November 16–19, 2018, 2018, Vol. 65, p. 555-556, article id PO-297Conference paper (Refereed)
    Abstract [en]

    Background/Objectives: Siblings face many challenges and the aim of this paper is to explore bereaved siblings’ memories and experiences of their brother's or sister's illness and death.

    Design/Methods: In this nationwide Swedish study 174 of 240 (73 %) bereaved siblings participated and 70 % responded to two open‐ended questions on siblings’ positive and negative memories and experiences of illness and death. The data were analyzed using systematic text condensation.

    Results: The bereaved siblings’ responses were categorized into four different themes: endurance vs. vulnerability; family cohesion vs. family conflicts; growth vs. stagnation; professional support vs. lack of professional support. Endurance was expressed as the influence that the ill siblings’ willpower, good mood and stamina had on the healthy siblings, whereas vulnerability was expressed as the feeling of emptiness and loneliness. Family cohesion was expressed as the bonds being strengthened between family members, whereas family conflicts often led siblings to feel invisible and unacknowledged. In the third theme, most siblings expressed feeling that they grew as individuals in the process of their brother's or sister's illness and death, whereas others experienced stagnation because of the physical and mental distress they bore throughout this time, often feeling forgotten. In the last theme, most siblings perceived support by physicians and staff at the hospital as being warm, kind and honest, while some siblings had negative experiences.

    Conclusions: Our study shows that bereaved siblings can have positive memories and experiences, even though the death of a sibling is a distressing situation. The significance of the positive buffering effect on the bereaved siblings’ own endurance, personal growth, family cohesion and social support should be noted. The knowledge acquired by listening to the voices of bereaved siblings can be valuable in showing healthcare professionals the importance of supporting siblings of children with cancer throughout the cancer trajectory and afterwards into bereavement.

  • 26.
    Eivergård, Kristina
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Mittuniversitetet.
    Enmarker, Ingela
    Högskolan i Gävle.
    Livholts, Mona
    Helsinki University, Finland.
    Aléx, Lena
    Umeå universitet.
    Hellzén, Ove
    Mittuniversitetet.
    Disciplined into Good Conduct: Gender Constructions of Users in a Municipal Psychiatric Context in Sweden2021In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 30, no 15-16, p. 2258-2269Article in journal (Refereed)
    Abstract [en]

    AIMS AND OBJECTIVES: To examine how gendered discursive norms and notions of masculinity and femininity were (re)produced in professional conversations about users of long-term municipality psychiatric care. Focus is on the staff's use of language in relation to gender constructions.

    BACKGROUND: Psychiatric care in Sweden has undergone tremendous changes in recent decades from custodian care in large hospitals to a care mainly located in a municipal context. People who need psychiatric care services often live in supporting houses. In municipal psychiatric care, staff conduct weekly professional meetings to discuss daily matters and the users' needs. Official reports of the Swedish government have shown that staff in municipal care services treat disabled women and men differently. Studies exploring gender in relation to users of long-term psychiatric care in municipalities have problematised the care and how staff, through language, construct users' gender. Therefore, language used by staff is a central tool for ascribing different gender identities of users.

    DESIGN: The content of speech derived from audio recordings were analysed using Foucauldian discursive analysis. The COREQ checklist was used in this article.

    RESULTS: The results indicate that by relying on gender discourses, staff create a conditional care related to how the users should demonstrate good conduct. In line with that, an overall discourse was created: Disciplined into good conduct. It was underpinned by three discourses inherent therein: The unreliable drinker and the confession, Threatened dignity, Doing different femininities.

    CONCLUSION: The community psychiatric context generates a discourse of conduct in which staff, via spoken language (re)produces gendered patterns and power imbalances as a means to manage daily work routines. Such practices of care, in which constant, nearly panoptic, control despite the intention to promote autonomy, urgently require problematising current definitions of good conduct and normality.

  • 27.
    Eivergård, Kristina
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Mittuniversitetet.
    Enmarker, Ingela
    Högskolan i Gävle.
    Livholts, Mona
    Linköpings universitet.
    Aléx, Lena
    Umeå universitet.
    Hellzén, Ove
    Mittuniversitetet.
    The Importance of Being Acceptable: Psychiatric Staffs' Talk about Women Patients in Forensic Care2019In: Issues in Mental Health Nursing, ISSN 0161-2840, E-ISSN 1096-4673, Vol. 40, no 2, p. 124-132Article in journal (Refereed)
    Abstract [en]

    Currently, women comprise about ten percent of those sentenced to psychiatric forensic clinics in Sweden. Those who are sentenced to forensic care because of offending and violent behaviour have already taken a step away from the usually expected female behaviour. On the other hand, there are many women in forensic care who have not committed crimes, but who instead self-harm. Studies have identified a gender bias in diagnosing and care in psychiatric settings, but there are few studies conducted on women in forensic care. The present study therefore examined how the situation of women patients and female norms are expressed in the staff's talk about these women during verbal handovers and ward rounds at a forensic clinic in Sweden. The aim was to explore how psychiatric staff, in a context of verbal handovers and ward rounds, talk about women who have been committed to forensic psychiatric care, and what consequences this might have for the care of the patients. The content of speech was examined using audio recordings and a method of analysis that was inspired by thematic analysis. The analysis identified that the staff talked about the women in a way that indicates that they expected the women to follow the rules and take responsibility for their bodies in order to be regarded as acceptable patients.

  • 28.
    Eklund, Rakel
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Eisma, Maarten
    University of Groningen, NLD.
    Boelen, Paul
    Utrecht University, NLD; University of Groningen, NLD.
    Arnberg, Filip
    Uppsala universitet.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    A Mobile App for Prolonged Grief among Bereaved Parents: Study Protocol for a Randomized Controlled Trial2021Manuscript (preprint) (Other academic)
    Abstract [en]

    Introduction: Bereaved parents have elevated risk to develop mental health problems, yet, few studies have evaluated the effect of psychosocial interventions developed for bereaved parents. Cognitive behavioral therapy (CBT), both face-to-face or digitally delivered, has shown to be an effective intervention for prolonged grief symptoms. Self-help mobile apps offer various advantages and studies show improved mental health after app interventions. No app has yet been evaluated targeting prolonged grief in bereaved parents. Therefore, the aim of this planned study is to develop and examine the effectiveness of a CBT-based mobile app, called My Grief, in reducing symptoms of prolonged grief, as well as other psychological symptoms, in bereaved parents. Another aim is to assess users’ experiences and adverse events of My Grief.

    Methods and analysis: We will conduct a two-armed randomized waitlist-controlled trial. Parents living in Sweden, who lost a child to cancer between one and ten years ago, with elevated symptoms of prolonged grief, will be recruited to participate in the trial. The content of My Grief covers four main domains (Learn; Self-monitoring; Exercises; Get support) and builds on principles of CBT and the proven-effective PTSD Coach app. Participants in the intervention group will fill out online questionnaires at baseline and at 3-, 6- and 12-months follow-ups, and the waitlist-controls at baseline and at 3 months. The primary outcome will be prolonged grief symptoms at the 3 months follow-up. Secondary outcomes are posttraumatic stress and depression symptoms, quality of life, and cognitive behavioral variables (i.e., avoidance, rumination, negative cognitions).

    Ethics and dissemination: Ethical approval has been received from the Swedish Ethical Review Authority (project no. 2021-00770). If the app is shown to be effective, the app will be made publicly accessible on app stores, so that it can benefit other bereaved parents.

    Trial registration: Clinicaltrials.gov, identifier: NCT04552717.

  • 29.
    Elmberger, Eva
    Ersta Sköndal University College, Department of Health Care Sciences. Karolinska institutet.
    Att som förälder få en cancersjukdom: erfarenheter av föräldraansvar2004Doctoral thesis, comprehensive summary (Other academic)
    Download full text (pdf)
    FULLTEXT01
  • 30.
    Engelbak Nielsen, Zandra
    et al.
    Copenhagen University Hospital, Denmark.
    Eriksson, Stefan
    Uppsala universitet.
    Schram Harsløf, Laurine Bente
    Copenhagen University Hospital, Denmark.
    Petri, Suzanne
    Copenhagen University Hospital, Denmark.
    Helgesson, Gert
    Karolinska institutet.
    Mangset, Margrete
    Oslo University Hospital, Norway.
    Godskesen, Tove
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Are cancer patients better off if they participate in clinical trials?: A mixed methods study2020In: BMC Cancer, E-ISSN 1471-2407, Vol. 20, no 1, p. 1-17, article id 401Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Research and cancer care are closely intertwined; however, it is not clear whether physicians and nurses believe that clinical trials offer the best treatment for patients and, if so, whether this belief is justified. The aim of this study was therefore: (i) to explore how physicians and nurses perceive the benefits of clinical trial participation compared with standard care and (ii) whether it is justified to claim that clinical trial participation improves outcomes for cancer patients.

    METHODS: A mixed methods approach was used employing semi-structured interviews with 57 physicians and nurses in oncology and haematology and a literature review of the evidence for trial superiority, i.e. the idea that receiving treatment in a clinical trial leads to a better outcome compared with standard care. Inductive thematic analysis was used to examine the interview data. A literature review comprising nine articles was conducted according to a conceptual framework developed by Peppercorn et al. and evaluated recent evidence on trial superiority.

    RESULTS: Our findings show that many physicians and nurses make claims supporting trial superiority, however very little evidence is available in the literature comparing outcomes for trial participants and non-participants that supports their assertions.

    CONCLUSIONS: Despite the recent rapid development and use of targeted therapy and immunotherapy, we find no support for trial participation to provide better outcomes for cancer patients than standard care. Hence, our present results are in line with previous results from Peppercorn et al. A weaker version of the superiority claim is that even if a trial does not bring about a direct positive effect, it brings about indirect positive effects. However, as the value of such indirect effects is dependent on the individual's specific circumstances and preferences, their existence cannot establish the general claim that treatment in trials is superior. Belief in trial superiority is therefore unfounded. Hence, if such beliefs are communicated to patients in a trial recruitment context, it would provide misleading information. Instead emphasis should be on patients volunteering to give an altruistic contribution to the furthering of knowledge and to the potential benefit of future patients.

  • 31.
    Ervik, Bente
    et al.
    University of Tromsø, Norway; University Hospital of North Norway, Tromsø, Norway.
    Asplund, Kenneth
    University of Tromsø, Norway; Mittuniversitetet, Sundsvall.
    Dealing with a troublesome body: A qualitative interview study of men’s experiences living with prostate cancer treated with endocrine therapy2012In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 16, no 2, p. 103-108Article in journal (Refereed)
    Abstract [en]

    Purpose: Endocrine therapy for prostate cancer causes substantial side effects, and previous studies have focused on the impacts on sexuality and masculinity. Little is known about how men experience bodily alterations in everyday life through the course of the prostate cancer and treatment. The aim of this study was to show how men with prostate cancer experience bodily changes and how these alterations influence daily life.

    Method: The study was conducted via qualitative interviews with a phenomenological hermeneutic approach. We interviewed ten men (aged 58-83) with prostate cancer who received endocrine therapy as the primary treatment method.

    Results: The results showed that five themes were important for the men’s experiences of their bodily alterations throughout the course of the illness: "something is ’wrong’", "when the body becomes troublesome", "to be well or to be ill", "dealing with the alterations" and "to talk about cancer and the intimate details" Initially, the shock of receiving a cancer diagnosis and the physical changes in their bodies were at the forefront of many patients’ minds. Eventually, the impact of the side effects became more evident, which caused problems in everyday life. Yet, the men were able to reflect on the impact of treatment on their everyday lives.

    Conclusion: This study showed that hormone treatment has a significant influence, both directly and indirectly, on the bodies of prostate cancer patients. The experiences of men with prostate cancer may lead to feelings of loss of identity on an existential level. © 2011 Elsevier Ltd.

  • 32.
    Esmat Hosseini, Seyedeh
    et al.
    Shahid Beheshti University of Medical Sciences, Tehran, Iran.
    Ilkhani, Mahnaz
    Shahid Beheshti University of Medical Sciences, Tehran, Iran.
    Rohani, Camelia
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Shahid Beheshti University of Medical Sciences, Tehran, Iran.
    Nikbakht Nasrabadi, Alireza
    Tehran University of Medical Sciences, Tehran, Iran.
    Ghanei Gheshlagh, Raza
    Kurdistan University of Medical Sciences, Sanandaj, Iran.
    Moini, Ashraf
    Tehran University of Medical Sciences, Tehran, Iran; Royan Institute for Reproductive Biomedicine, ACECR, Tehran, Iran; Tehran University of Medical Sciences, Tehran, Iran.
    Prevalence of sexual dysfunction in women with cancer: A systematic review and meta-analysis2022In: International journal of reproductive biomedicine, ISSN 2476-4108, Vol. 20, no 1, p. 1-12Article, review/survey (Refereed)
    Abstract [en]

    Background: Cancer is one of the most common diseases and it has many physical and psychological consequences. Women with cancer are more likely to suffer from sexual dysfunction (SD) than healthy women.

    Objective: To estimate the overall prevalence of SD in women with cancer.

    Materials and Methods: The international databases Google Scholar, Embase, PubMed, Web of Science, and Scopus were searched for related articles without any time limitation. The keywords "Neoplasia", "Tumor", "Cancer", "Malignancy", "Female Sexual Function Index", "FSFI", and "female sexual dysfunction" along with their combinations were used in the search. Inconsistencies in the data were examined using the I2 test. The data were analyzed using the meta-analysis method and the random-effects model in the Stata software.

    Results: The analysis of 24 articles with a sample size of 5483 women showed that the prevalence of SD in women with cancer was 66% (95% CI: 59-74%). The highest and lowest prevalence were in Africa and Europe, respectively (75%; 95% CI: 66-83% vs. 43%; 95% CI: 26-60%, respectively). There was no relationship between the prevalence of SD and the mean age of the women, sample size, yr of publication, or quality of articles.

    Conclusion: SD is highly prevalent in women with cancer. African and American women with cancer have a higher average SD prevalence than Asian and European ones.

  • 33.
    Gabrielsson, Hanna
    et al.
    Röda Korsets Högskola, Hälsovetenskapliga institutionen.
    Hjorth, Elin
    Marie Cederschiöld University, Department of Health Care Sciences.
    Wallin, Viktoria
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Pohlkamp, Lilian
    Marie Cederschiöld University, Department of Health Care Sciences.
    Övergången från att vara patient med cancer till person med erfarenhet av cancer: Civilsamhällets roll i rehabilitering2023In: Socialmedicinsk Tidskrift, ISSN 0037-833X, Vol. 100, no 1, p. 165-178Article, review/survey (Refereed)
    Abstract [en]

    A completed cancer treatment does not automatically mean an end to the challenges often following cancer. The need for cancer rehabilitation grow as the number of people that survives cancer increases. It is not entirely clear which rehabilitation services are in demand or which actors should offer these. Through a literature review, this study has shed light on the role of civil society in the Nordic countries in rehabilitation after cancer, as well as study participants’ experiences of cancer rehabilitation. The results of the literature review show that few studies have been published addressing the role of civil society in cancer rehabilitation. People who have undergone a cancer disease often need support, and support from people in a similar situation was appreciated by many. The results state that civil society plays a significant role in the organization of cancer rehabilitation. 

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  • 34.
    Gerhardsson, Emma
    et al.
    Uppsala universitet.
    Rosenblad, Andreas
    Uppsala universitet.
    Mattsson, Elisabet
    Uppsala universitet.
    Funquist, Eva-Lotta
    Uppsala universitet.
    Mothers' Adaptation to a Late Preterm Infant When Breastfeeding2020In: Journal of Perinatal & Neonatal Nursing, ISSN 0893-2190, E-ISSN 1550-5073, Vol. 34, no 1, p. 88-95Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to psychometrically test the Adaptation to the Late Preterm Infant when BreastfeedingScale (ALPIBS) and also to test how a mother’s self efficacy predicts adaptation to a late preterm infant when breastfeeding. This study had a longitudinal and prospective design, and data collection was consecutive. Mothers(n = 105) with infants born between 340/7 and 366/7 weeks were recruited from a neonatal intensive care unit or a maternity unit. The ALPIBS was developed using exploratory factor analysis, and the association between breastfeeding self-efficacy and ALPIBS score was examined using linear regression analysis. The Breastfeeding Self-Efficacy Scale–Short Form instrument was used to measure self efficacy in breastfeeding. A higher degree of self-efficacy was significantly associated with a higher degree of adaptation to the late preterm infant’s breastfeeding behavior(P < .001).We identified 4 separate underlying factors measured by 11 items in the ALPIBS: (A) breastfeeding is a stressful event; (B) the infant should breastfeed as often as he or she wants; (C) a mother has to breastfeed to be a good mother; and (D) it is important to ensure control over the infant’s feeding behavior. There is a link between self-efficacy and ALPIBS score, and self-efficacy is a modifiable factor that influences breastfeeding.

  • 35.
    Godskesen, Tove E
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Fernow, Josepine
    Uppsala universitet.
    Eriksson, Stefan
    Uppsala universitet.
    Quality of online information about phase I clinical cancer trials in Sweden, Denmark and Norway.2018In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 27, no 6, article id e12937Article in journal (Refereed)
    Abstract [en]

    Patients increasingly search for online information about clinical trials. Little is known about the quality and readability of the information in these databases. Therefore, the aim of this study was to assess the quality and readability of online information available to the public on phase I clinical cancer trials in Sweden, Denmark and Norway. A qualitative content analysis was made of 19 online trial descriptions from three public websites in Sweden, Denmark and Norway, and the readability of the documents was tested. Both the quality of the content and the readability scores were best for the Danish information. The Swedish texts were very short and were the least readable. Overall, the quality of the information was highly variable and nearly all the documents were misleading in part. Furthermore, the descriptions provided almost no information about possible adverse effects or disadvantages of study participation. This study highlights a communication problem and proposes new ways of presenting studies that are less suggestive of positive outcomes, arguing that we should be more careful to include information about adverse effects, and that the use of simple measures like readability testing can be useful as an indicator of text quality.

  • 36.
    Godskesen, Tove
    et al.
    Uppsala universitet.
    Hansson, M G
    Uppsala universitet.
    Nygren, P
    Uppsala universitet.
    Nordin, K
    Uppsala universitet; University of Bergen, Norway.
    Kihlbom, U
    Uppsala universitet.
    Hope for a cure and altruism are the main motives behind participation in phase 3 clinical cancer trials2015In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 24, no 1, p. 133-41Article in journal (Refereed)
    Abstract [en]

    It is necessary to carry out randomised clinical cancer trials (RCTs) in order to evaluate new, potentially useful treatments for future cancer patients. Participation in clinical trials plays an important role in determining whether a new treatment is the best therapy or not. Therefore, it is important to understand on what basis patients decide to participate in clinical trials and to investigate the implications of this understanding for optimising the information process related to study participation. The aims of this study were to (1) describe motives associated with participation in RCTs, (2) assess if patients comprehend the information related to trial enrolment, and (3) describe patient experiences of trial participation. Questionnaires were sent to 96 cancer patients participating in one of nine ongoing clinical phase 3 trials at the Department of Oncology, Uppsala University Hospital in Sweden. Eighty-eight patients completed the questionnaire (response rate 92%); 95% of these were patients in adjuvant therapy and 5% participated in clinical trials on palliative care. Two main reasons for participation were identified: personal hope for a cure and altruism. Patients show adequate understanding of the information provided to them in the consent process and participation entails high patient satisfaction.

  • 37.
    Godskesen, Tove
    et al.
    Uppsala universitet.
    Kihlbom, U
    Uppsala universitet.
    Nordin, K
    Uppsala universitet; University of Bergen, Norway.
    Silén, M
    Uppsala universitet.
    Nygren, P
    Uppsala universitet.
    Differences in trial knowledge and motives for participation among cancer patients in phase 3 clinical trials.2016In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 25, no 3, p. 516-23Article in journal (Refereed)
    Abstract [en]

    While participants in clinical oncology trials are essential for the advancement of cancer therapies, factors decisive for patient participation have been described but need further investigation, particularly in the case of phase 3 studies. The aim of this study was to investigate differences in trial knowledge and motives for participation in phase 3 clinical cancer trials in relation to gender, age, education levels and former trial experience. The results of a questionnaire returned from 88 of 96 patients (92%) were analysed using the Mann-Whitney U-test. There were small, barely relevant differences in trial knowledge among patients when stratified by gender, age or education. Participants with former trial experience were less aware about the right to withdraw. Male participants and those aged ≥65 years were significantly more motivated by a feeling of duty, or by the opinions of close ones. Men seem more motivated than women by external factors. With the awareness that elderly and single male participants might be a vulnerable group and participants with former trial experience are less likely to be sufficiently informed, the information consent process should focus more on these patients. We conclude that the informed consent process seems to work well, with good results within most subgroups.

  • 38.
    Godskesen, Tove
    et al.
    Uppsala universitet.
    Nygren, Peter
    Uppsala universitet.
    Nordin, Karin
    Uppsala universitet; University of Bergen, Norway.
    Hansson, Mats
    Uppsala universitet.
    Kihlbom, Ulrik
    Uppsala universitet.
    Phase 1 clinical trials in end-stage cancer: patient understanding of trial premises and motives for participation2013In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 21, no 11, p. 3137-3142Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: In cancer, phase 1 clinical trials on new drugs mostly involve patients with advanced disease that is unresponsive to standard therapy. The purpose of this study was to explore the difficult ethical problems related to patient information and motives for participation in such trials.

    METHOD: A descriptive and explorative qualitative design was used. Fourteen cancer patients from three different phase 1 trials in end-stage cancer were interviewed. The interviews were analysed using qualitative content analysis.

    RESULTS: The patients expressed unrealistic expectations of therapeutic benefit and inadequate understanding of the trials' purpose, so-called therapeutic misconception. However, they reported a positive attitude towards participation. Thus, the patients valued the close and unique medical and psychological attention they received by participating. Participation also made them feel unique and notable.

    CONCLUSIONS: Patients with end-stage cancer participating in phase 1 clinical trials are unaware of the very small potential for treatment benefit and the risk of harm. Trial participation may offer hope and social-emotional support and a strategy for coping with the emotional stress associated with advanced cancer and may, consequently, improve emotional well-being.

  • 39. Hagberg, Anette
    et al.
    Bui, The-Hung
    Winnberg, Elisabeth
    Ersta Sköndal University College, Department of Health Care Sciences.
    More appreciation of life or regretting the test? Experiences of living as a mutation carrier of Huntington's disease2011In: Journal of Genetic Counseling, ISSN 1059-7700, E-ISSN 1573-3599, Vol. 20, no 1, p. 70-79Article in journal (Refereed)
    Abstract [en]

    Little is known about how the knowledge of being a mutation carrier for Huntington's disease (HD) influences lives, emotionally and socially. In this qualitative study 10 interviews were conducted to explore the long term (>5 years) experiences of being a mutation carrier. The results showed a broad variety of both positive and negative impact on the carriers' lives. The most prominent positive changes reported were a greater appreciation of life and a tendency to bring the family closer together. On the other hand, some participants expressed decisional regrets and discussed the negative impact this knowledge had on their psychological well-being. The knowledge variously served as either a motivator or an obstacle in pursuing further education, career or investment in personal health. Deeper understanding of people's reactions to the certainty of knowing they will become affected with HD is essential for the genetic counseling team in order to provide appropriate support.

  • 40.
    Hagren, Birger
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences.
    Pettersen, Inga-Märta
    Severinsson, Elisabeth
    Lützén, Kim
    Ersta Sköndal University College, Department of Health Care Sciences.
    Clyne, Naomi
    Maintenance haemodialysis: patients’ experiences of their life situation2005In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 14, no 3, p. 294-300Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to examine how patients suffering from CKD on maintenance haemodialysis experience their life situation. The focus was on how treatment encroaches on time and space and how patients experience care. The rationale was that this knowledge is necessary to provide professional support that takes into consideration a person's whole life situation.The experiences of patients with chronic kidney disease (CKD) undergoing maintenance haemodialysis have been studied in many quantitative studies, which translate patients’ subjective experiences into objectively quantifiable data. However, there are few qualitative studies examining the experiences of these patients’ life situation and expressing their experiences within the context of a nursing and caregiver's perspective.Data were collected by interviews with 41 patients between the ages of 29 and 86 years who participated in the study. A content analysis was used to identify common themes that describe the patients’ experiences of their life situation.Three main themes were identified,‘not finding space for living’,‘feelings evoked in the care situation’ and,‘attempting to manage restricted life’. The first theme‘not finding space for living’ consisted of two sub-themes:‘struggling with time-consuming care’ and‘feeling that life is restricted’. The second theme‘feelings evoked in the care situation’ consisted of two sub-themes:‘sense of emotional distance’ and‘feeling vulnerable’.The patients in this study indirectly expressed an existential struggle, indicating that encroachment of time and space were important existential dimensions of CKD. The findings indicated that caregivers were not always aware of this inducing a sense of emotional distance and a sense of vulnerability in the patients.Caregivers in dialysis units have to consider haemodialysis patients’ experience of a sense of emotional distance in their relationship to caregivers. Nurses and doctors need to create routines within nursing practice to overcome this.

  • 41.
    Hagren, Birger
    et al.
    Karolinska institutet.
    Pettersen, Inga-Märta
    Severinsson, Elisabeth
    Lützén, Kim
    Clyne, Naomi
    The haemodialysis machine as a lifeline: experiences of suffering from end-stage renal disease2001In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 34, no 2, p. 196-202Article in journal (Refereed)
  • 42. Hansson, Jan-Håkan
    Organizing normality: essays on organizing day activities for people with severe mental disturbances1993Doctoral thesis, monograph (Other academic)
  • 43.
    Hedelin, Maria
    et al.
    Göteborgs universitet.
    Skokic, Viktor
    Göteborgs universitet.
    Wilderäng, Ulrica
    Göteborgs universitet.
    Ahlin, Rebecca
    Göteborgs universitet.
    Bull, Cecilia
    Göteborgs universitet.
    Sjöberg, Fei
    Göteborgs universitet.
    Dunberger, Gail
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Bergmark, Karin
    Göteborgs universitet.
    Stringer, Andrea
    Australia.
    Steineck, Gunnar
    Göteborgs universitet; Karolinska institutet.
    Intake of citrus fruits and vegetables and the intensity of defecation urgency syndrome among gynecological cancer survivors.2019In: PLOS ONE, E-ISSN 1932-6203, Vol. 14, no 1, article id e0208115Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Despite the experimental evidence that certain dietary compounds lower the risk of radiation-induced damage to the intestine, clinical data are missing and dietary advice to irradiated patients is not evidence-based.

    MATERIALS AND METHODS: We have previously identified 28 intestinal health-related symptoms among 623 gynaecological-cancer survivors (three to fifteen years after radiotherapy) and 344 matched population-based controls. The 28 symptoms were grouped into five radiation-induced survivorship syndromes: defecation-urgency syndrome, fecal-leakage syndrome, excessive mucus discharge, excessive gas discharge and blood discharge. The grouping was based on factor scores produced by Exploratory Factor Analysis in combination with the Variable Cutoff Method. Frequency of food intake was measured by a questionnaire. We evaluated the relationship between dietary intake and the intensity of the five syndromes.

    RESULTS: With the exception of excessive mucus discharge, the intensity of all syndromes declined with increasing intake of citrus fruits. The intensity of defecation-urgency and fecal-leakage syndrome declined with combined intake of vegetables and citrus fruits. The intensity of excessive mucus discharge was increased with increasing intake of gluten.

    CONCLUSION: In this observational study, we found an association between a high intake of citrus fruits and vegetables and a lower intensity of the studied radiation-induced cancer survivorship syndromes. Our data suggest it may be worthwhile to continue to search for a role of the diet before, during and after radiotherapy to help the cancer survivor restore her or his intestinal health after irradiation.

  • 44.
    Holm, Maja
    et al.
    Department of Nursing Sciences, Sophiahemmet University, Stockholm.
    Doveson, Sandra
    Department of Nursing Sciences, Sophiahemmet University, Stockholm; Division of Insurance Medicine, Department of Clinical Neuroscience, Karolinska Institutet, Stockholm.
    Lindqvist, Olav
    Department of Learning, Informatics, Management & Ethics, Karolinska Institutet, Stockholm; Department of Nursing, Umeå University, Umeå.
    Wennman-Larsen, Agneta
    Department of Nursing Sciences, Sophiahemmet University, Stockholm; Division of Insurance Medicine, Department of Clinical Neuroscience, Karolinska Institutet, Stockholm.
    Fransson, Per
    Department of Nursing, Umeå University, Umeå; Cancercentrum, Norrlands University Hospital, Umeå.
    Quality of life in men with metastatic prostate cancer in their final years before death: A retrospective analysis of prospective data2018In: BMC Palliative Care, E-ISSN 1472-684X, Vol. 17, no 1, article id 126Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Quality of Life (QoL) is the most important outcome for patients in palliative care along with symptom alleviation. Metastatic prostate cancer (mPC) is a life-threatening illness, and hence, a palliative care approach may be beneficial to this group. Over time, new life-prolonging treatments have been developed for men with mPC, but the possibility to prolong life should also be balanced against the men’s QoL, particularly because there are side effects involved with these treatments. The aim of this study was to evaluate QoL, functioning and symptoms in men with mPC during their final years before death.

    METHODS: This is a retrospective analysis of data from a long-term prospective study of men (n = 3885) with prostate cancer from two regions in Sweden. Validated questionnaires asking about participants’ QoL, functioning and symptoms were used to collect data. From the overall study, 190 men with mPC were identified. They were stratified into three groups, depending on the amount of time that had passed between the last questionnaire and their death; &lt; 6 months, 6-18 months and &gt; 18 months before death.

    RESULTS: Men with mPC generally rated their QoL poorly compared to established clinically significant threshold values. The group of men that were &lt; 6 months before death rated their QoL, functioning and several symptoms significantly worse than the two other groups. Men that died after the year 2006 reported lower QoL and functioning and more pain and fatigue than those who died before 2006.

    CONCLUSION: The results in this study indicate that men with mPC have unmet needs with regards to QoL and symptoms. A palliative care approach, alongside possible life-prolonging treatments, that focuses on QoL and symptom relief, may serve as an important frame to give the best support to these men in their final years of life.

  • 45.
    Junehag, Lena
    et al.
    Mittuniversitetet.
    Asplund, Kenneth
    Mittuniversitetet.
    Svedlund, Marianne
    Mittuniversitetet.
    A qualitative study: Perceptions of the psychosocial consequences and access to support after an acute myocardial infarction2014In: Intensive & Critical Care Nursing, ISSN 0964-3397, E-ISSN 1532-4036, Vol. 30, no 1, p. 22-30Article in journal (Refereed)
    Abstract [en]

    Objectives: The aim of this study was to describe individuals' perceptions of the psychosocial consequences of an acute myocardial infarction (AMI) and of their access to support one year after the event. Methods: The study included 20 participants (14 men and six women) who lived in rural areas and had experienced their first AMI. Eleven were offered contact with a mentor. The participants were interviewed one year after their AMI. Results: The findings are presented in three themes: having a different life, having to manage the situation and having access to support, with 11 subthemes. During their recovery, the participants experienced psychosocial consequences, consisting of anxiety and the fear of being afflicted again. Most mentees appreciated their mentor and some of those without mentors wished they had received organised support. Participants were often more dissatisfied than satisfied with the follow-up provided during recovery. Conclusions: After an AMI, follow-up is important during recovery, but the standardised information provided is inadequate. During recovery, people need help dealing with existential crises. After discharge, receiving peer support from lay people with similar experiences could be valuable. The knowledge gleaned from this study could be used in education at coronary care units and in health care outside the hospital setting. © 2013 Elsevier Ltd.

  • 46.
    Karlsson, Magdalena
    et al.
    Institute of Health and Care Sciences, Sahlgrenska Academy at the University of Gothenburg; Sahlgrenska University Hospital.
    Friberg, Febe
    University of Gothenburg Centre for Person-Centred Care; University of Stavanger, Norway.
    Wallengren, Catarina
    Institute of Health and Care Sciences, Sahlgrenska Academy at the University of Gothenburg; University of Gothenburg Centre for Person-Centred Care.
    Öhlén, Joakim
    Ersta Sköndal University College, Palliative Research Centre, PRC. Institute of Health and Care Sciences, Sahlgrenska Academy at the University of Gothenburg; University of Gothenburg Centre for Person-Centred Care.
    Meanings of existential uncertainty and certainty for people diagnosed with cancer and receiving palliative treatment: A life-world phenomenological study2014In: BMC Palliative Care, E-ISSN 1472-684X, ISSN 1472-684X, Vol. 13, no 28Article in journal (Refereed)
    Abstract [en]

    Background

    Many people around the world are getting cancer and living longer with the disease. Thanks to improved treatment options in healthcare, patients diagnosed with advanced gastrointestinal cancer can increasingly live for longer. Living with cancer creates existential uncertainty, but what does this situation mean for the individual? The purpose of the study is to interpret meanings of existential uncertainty and certainty for people diagnosed with advanced gastrointestinal cancer and receiving palliative treatment.

    Methods

    This study is part of a larger project in which 7 men and 7 women aged between 49 and 79 participated in a study of information and communication for people with advanced gastrointestinal cancer. A total of 66 interviews were conducted with participants who were followed up over time. The narrative interviews were transcribed verbatim and the texts were analysed in three steps: naive reading, structural analysis and interpreted whole by utilizing a phenomenological life-world approach.

    Results

    This study has identified different spheres in which people diagnosed with advanced gastrointestinal cancer vacillate between existential uncertainty and certainty: bodily changes, everyday situations, companionship with others, healthcare situations and the natural environment. Existing in the move between existential uncertainty and certainty appears to change people’s lives in a decisive manner. The interview transcripts reveal aspects that both create existential certainty and counteract uncertainty. They also reveal that participants appear to start reflecting on how the new and uncertain aspects of their lives will manifest themselves –a new experience that lays the foundation for development of knowledge, personal learning and growth.

    Conclusions

    People diagnosed with advanced gastrointestinal cancer and receiving palliative care expressed thoughts about personal learning initiated by the struggle of living with an uncertain future despite their efforts to live in the present. Their personal learning was experienced through a changed life for themselves and having to confront their own pending death and develop self-insight regarding finality of life. Healthcare professionals can try to support people receiving palliative treatment for cancer by diversifying avenues for their personal growth, thus helping them manage their existential uncertainty and gravitate towards greater existential certainty.

  • 47.
    Klasson, Caritha
    et al.
    Karolinska institutet; Stiftelsen Stockholms sjukhem.
    Helde Frankling, Maria
    Karolinska institutet; Stiftelsen Stockholms sjukhem.
    Lundh Hagelin, Carina
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Karolinska institutet.
    Björkhem-Bergman, Linda
    Karolinska institutet; Stiftelsen Stockholms sjukhem.
    Fatigue in Cancer Patients in Palliative Care: A Review on Pharmacological Interventions.2021In: Cancers, ISSN 2072-6694, Vol. 13, no 5, article id 985Article, review/survey (Refereed)
    Abstract [en]

    Fatigue is one of the most distressing symptoms experienced by cancer patients. The suggested biological mechanism for cancer related fatigue (CRF) includes immune activation triggered by tumor tissue or by anticancer treatment but other mechanisms have also been proposed. Previous large meta-analysis of interventions on fatigue focuses mostly on patients early in the disease trajectory, with only one tenth of included studies performed in palliative cohorts. The aim of this narrative review is therefore to present a background on CRF with focus on the palliative setting. A summary of recent randomized, controlled trials on pharmacological interventions on CRF in palliative care is presented, including studies on psychostimulants, corticosteroids, testosterone and melatonin. Interestingly, in several of these studies there was a positive and similar effect on fatigue in both the intervention and the placebo arm-indicating an important placebo effect for any pharmacological treatment. In addition, studies on dietary supplements and on pharmacological complementary medicines are discussed. To conclude, the evidence is still weak for using pharmacological treatments on CRF in palliative care patients-although methylphenidate and corticosteroids might be considered.

  • 48.
    Klasson, Caritha
    et al.
    Department of Neurobiology, Care Sciences and Society (NVS), Division of Clinical Geriatrics, Karolinska Institutet; Palliative Medicine, Stockholms Sjukhem Foundation.
    Helde Frankling, Maria
    Department of Neurobiology, Care Sciences and Society (NVS), Division of Clinical Geriatrics, Karolinska Institutet; Palliative Medicine, Stockholms Sjukhem Foundation.
    Lundh Hagelin, Carina
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Department of Neurobiology, Care Sciences and Society (NVS), Division of Nursing, Karolinska Institutet.
    Björkhem-Bergman, Linda
    Department of Neurobiology, Care Sciences and Society (NVS), Division of Clinical Geriatrics, Karolinska Institutet; Palliative Medicine, Stockholms Sjukhem Foundation.
    Fatigue in Cancer Patients in Palliative Care: A Review on Pharmacological Interventions2021In: Cancers, ISSN 2072-6694, Vol. 13, no 5, article id 985Article, review/survey (Refereed)
    Abstract [en]

    Fatigue is one of the most distressing symptoms experienced by cancer patients. The suggested biological mechanism for cancer related fatigue (CRF) includes immune activation triggered by tumor tissue or by anticancer treatment but other mechanisms have also been proposed. Previous large meta-analysis of interventions on fatigue focuses mostly on patients early in the disease trajectory, with only one tenth of included studies performed in palliative cohorts. The aim of this narrative review is therefore to present a background on CRF with focus on the palliative setting. A summary of recent randomized, controlled trials on pharmacological interventions on CRF in palliative care is presented, including studies on psychostimulants, corticosteroids, testosterone and melatonin. Interestingly, in several of these studies there was a positive and similar effect on fatigue in both the intervention and the placebo arm—indicating an important placebo effect for any pharmacological treatment. In addition, studies on dietary supplements and on pharmacological complementary medicines are discussed. To conclude, the evidence is still weak for using pharmacological treatments on CRF in palliative care patients—although methylphenidate and corticosteroids might be considered.

  • 49.
    Lagerin, Annica
    et al.
    Karolinska institutet; Stockholm läns landsting.
    Törnkvist, Lena
    Karolinska institutet; Stockholm läns landsting.
    Nilsson, Gunnar
    Karolinska institutet; Stockholm läns landsting.
    Johnell, Kristina
    Karolinska institutet; Stockholm läns landsting.
    Fastbom, Johan
    Karolinska institutet; Stockholm läns landsting.
    Extent and quality of drug use in community-dwelling people aged ≥75 years: A Swedish nationwide register-based study2020In: Scandinavian Journal of Public Health, ISSN 1403-4948, E-ISSN 1651-1905, Vol. 48, no 3, p. 308-315, article id 1403494817744101Article in journal (Refereed)
    Abstract [en]

    AIMS: It is important for district nurses and other health professionals in primary care to gain more insight into the patterns and quality of drug use in community-dwelling older people, particularly in 75-year-olds, who have been the target of preventive home visits. This study aimed to examine the extent and quality of drug use in community-dwelling older people and to compare drug use in 75-year-olds with that of older age groups.

    METHODS: Data from 2013 on people aged ≥75 years were obtained from the Swedish Prescribed Drug Register. Those living in the community (671,940/739,734 people aged ≥75 years) were included in the study. Quality of drug use was assessed by using a selection of indicators issued by the Swedish National Board of Health and Welfare.

    RESULTS: The prevalence of polypharmacy and of many drug groups increased with age, as did several indicators of inappropriate drug use. However some drug groups, as well as inappropriate drugs, were prevalent in 75-year-olds and declined with age, for example diabetes drugs, drugs with major anticholinergic effects and nonsteroidal anti-inflammatory drugs.

    CONCLUSIONS: The substantial use of some drugs as early as 75 years of age confirms the value of including drug use as a topic in preventive home visits to 75-year-olds. The finding that polypharmacy and many measures of inappropriate drug use increased with age in community-dwelling older people also underscores the importance of district nurses' role in continuing to promote safe medication management at higher ages.

  • 50.
    Leander, Mai
    et al.
    Uppsala universitet.
    Cronqvist, Agneta
    Ersta Sköndal University College, Department of Health Care Sciences.
    Janson, Christer
    Uppsala universitet.
    Uddenfeldt, Monica
    Uppsala universitet.
    Rask-Andersen, Anna
    Uppsala universitet.
    Health-related quality of life predicts onset of asthma in a longitudinal population study.2009In: Respiratory Medicine, ISSN 0954-6111, E-ISSN 1532-3064, Vol. 103, no 2, p. 194-200Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Health-related quality of life (HRQL) has been increasingly used as an outcome measure in asthma, but less is known about the prognostic implication of low health-related quality of life. The purpose of this study was to investigate if a set of quality of life measures could predict onset of asthma. METHODS: In the baseline study 391 subjects without asthma answered a respiratory questionnaire and the Gothenburg Quality of Life (GQL) instrument in 1990. The GQL questionnaire included two parts: (1) the prevalence of HRQL-related symptoms and (2) well-being scores for physical, mental and social dimensions. The participants were also investigated with spirometry and allergy testing. In 2003, the same respiratory questionnaire that had been used in 1990 was sent. There were 290 responders, of whom 22 subjects had developed asthma. RESULTS: Participants who had developed asthma by the follow-up had a higher prevalence of sleep disturbances (30% vs. 10%), problems with chest pain (16% vs. 2%), depression (40% vs. 20%) difficulty relaxing (40% vs. 13%) and constipation (25% vs. 2%) at baseline than participants who did not develop asthma (p<0.05). Subjects who developed asthma also scored significantly lower on well-being variables as sleep, energy, mood, patience, memory, appetite, fitness and sense of appreciation outside home. These differences remained after adjusting for age, sex, smoking habits, asthma heredity, socioeconomic groups and building dampness. CONCLUSION: Participants with low health-related quality of life at baseline were more likely to report having developed asthma 12 years later.

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