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  • 1.
    Agius, Josefine
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences.
    Klarare, Anna
    Marie Cederschiöld University, Department of Health Care Sciences.
    Mattsson, Elisabet
    Marie Cederschiöld University, Department of Health Care Sciences.
    Trygg kan ingen vara: Elever som lever med skyddade personuppgifter2022In: Skolhälsan, ISSN 0284-284X, no 4, p. 16-21Article in journal (Other (popular science, discussion, etc.))
    Abstract [sv]

    I Sverige lever över 10 000 barn med skyddade personuppgifter på grund av hot och våld. För barn och ungdomar som tvingas leva gömda kan skolan vara en tillflyktsort i en annars kaotisk värld.

  • 2.
    Agius, Josefine
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences.
    Klarare, Anna
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Mattsson, Elisabet
    Marie Cederschiöld University, Department of Health Care Sciences.
    Vamstad, Johan
    Marie Cederschiöld University, Institutionen för civilsamhälle och religion, Centre for Civil Society Research.
    Eriksson Lundström, Jenny
    Uppsala universitet.
    Vahlman, Sanna
    Ersta möjlighet, Stockholm.
    Vilket stöd våldsutsatta får blir ett lotteri: Ge kommuner ett särskilt bostadsförsörjningskrav för våldsutsatta2023In: Dagens Samhälle, article id 2023-06-08Article in journal (Other (popular science, discussion, etc.))
    Abstract [sv]

    Inrätta en nationell handlingsplan som säkerställer skydd, stöd och stadigvarande boende för våldsutsatta oavsett kommun, föreslår forskare i ett projekt om kvinnor i hemlöshet.

  • 3.
    Agius, Josefine
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences.
    Mattsson, Elisabet
    Marie Cederschiöld University, Department of Health Care Sciences.
    Kvinnor på skyddade boenden måste kunna ta tillbaka sina liv2022In: Expressen, ISSN 1103-923X, no 22-02-09Article in journal (Other (popular science, discussion, etc.))
    Abstract [sv]

    Sveriges myndigheter och kommuner måste sluta nöja sig med att kvinnor förvaras på skyddat boende under obestämd tid. Josefine Agius och Elisabet Mattsson uppmanar Sveriges myndigheter och kommuner att prioritera rätt i regeringens åtgärdspaket.

  • 4.
    Agius, Josefine
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences.
    Mattsson, Elisabet
    Marie Cederschiöld University, Department of Health Care Sciences.
    Woman Advisory Board,
    ”Stabil vardag måste ses som en del av traumabehandling”2022In: Dagens medicin, ISSN 1104-7488, no 2022-04-07Article in journal (Other (popular science, discussion, etc.))
    Abstract [sv]

    För kvinnor utan fast bostad är det omöjligt att få traumabehandling, eftersom en stabil vardag är ett krav, skriver Josefine Agius, Elisabet Mattsson och Woman Advisory Board.

  • 5.
    Ander, Malin
    et al.
    Uppsala universitet.
    Grönqvist, Helena
    Uppsala universitet.
    Cernvall, Martin
    Uppsala universitet.
    Engvall, Gunn
    Uppsala universitet.
    Hedström, Mariann
    Uppsala universitet.
    Ljungman, Gustaf
    Uppsala universitet.
    Lyhagen, Johan
    Uppsala universitet.
    Mattsson, Elisabet
    Uppsala universitet.
    Essen, Louise von
    Uppsala universitet.
    Development of health-related quality of life and symptoms of anxiety and depression among persons diagnosed with cancer during adolescence: a 10-year follow-up study2016In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 25, no 5, p. 582-589Article in journal (Refereed)
    Abstract [en]

    Objective: The main aim was to investigate the development of health-related quality of life (HRQOL) and symptoms of anxiety and depression in a cohort diagnosed with cancer during adolescence from shortly after up to 10 years after diagnosis. Methods: Participants (n = 61) completed the SF-36 and the HADS shortly; six, 12, and 18 months; and two, three, four, and 10 years (n = 28) after diagnosis. Polynomial change trajectories were used to model development. Results: Polynomial change trajectories showed an initial increase which abated over time into a decrease which abated over time for the SF-36 subscales Mental Health and Vitality; an initial decline which abated over time into an increase for HADS anxiety; and an initial decline which abated over time into an increase which abated over time for HADS depression. The SF-36 mental component summary showed no change from two to 10 years after diagnosis whereas the SF-36 physical component summary showed an increase from two years after diagnosis which declined over time. Ten years after diagnosis 29% reported possible anxiety. Conclusions: Development of HRQOL and symptoms of anxiety and depression appears to be nonlinear among persons diagnosed with cancer during adolescence. Well into permanent survivorship an increase in symptoms of anxiety is shown and approximately a third of the participants report possible anxiety. The findings indicate the need for: studies designed to pinpoint the times of highest psychological risk, clinical follow-up focusing on psychological problems, and development of effective psychological interventions for survivors of adolescent cancer

  • 6.
    Bockgård, Gustav
    et al.
    Department of Scandinavian Languages, Uppsala University, Uppsala.
    Mattsson, Elisabet
    Marie Cederschiöld University, Department of Health Care Sciences. Department of Women’s and Children’s Health, Healthcare Sciences and e-Health, Uppsala University, Uppsala.
    von Essen, Louise
    Department of Women’s and Children’s Health, Healthcare Sciences and e-Health, Uppsala University, Uppsala.
    Klarare, Anna
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Department of Women’s and Children’s Health, Healthcare Sciences and e-Health, Uppsala University, Uppsala.
    Collaborative Interpretation of Researcher-Generated Photo-Elicitation Findings: Insights From Women With Lived Experience of Homelessness2024In: Qualitative Health Research, ISSN 1049-7323, E-ISSN 1552-7557Article in journal (Refereed)
    Abstract [en]

    Interviews with individuals experiencing homelessness can be challenging for various reasons, including mental and physical health issues, substance use, and negative experiences with authority figures. Researchers have used photos to facilitate communication and empower participants during data collection. We analyzed data from a previous study to explore the use of researcher-generated photos during interviews about health with 13 women experiencing homelessness. Conversation analysis revealed clear patterns regarding the use of the photos during the interviews. The photos were referred to 118 times over the total interview length, 6 hours and 23 minutes, with the interviewer making 62% of the referrals and the women accounting for 38%. Fifty-nine percent of the referrals occurred within the first 5 minutes of the interviews. The women used the photos to trigger associations and emotions, to describe photo content, or in a minor role during the interview. Interpretations from an advisory board of six women with lived experiences of homelessness suggested that the photos did not engage participants as intended, highlighting the importance of considering participants’ perspectives when designing photo-elicitation methods. The feedback also provided valuable insights into interview locations and incentives in research that may have influenced the women’s willingness to use the photos. This study emphasizes the importance of understanding the complexity of choosing researcher-generated photos in interviews with underserved, hard-to-reach populations.

  • 7.
    Carlsson, Tommy
    et al.
    Sophiahemmet högskola; Uppsala universitet.
    Balbas, Banaz
    Uppsala universitet.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Written narratives from immigrants following a prenatal diagnosis: qualitative exploratory study.2019In: BMC Pregnancy and Childbirth, ISSN 1471-2393, E-ISSN 1471-2393, Vol. 19, no 1, p. 1-7, article id 154Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Expectant parents often have optimistic expectations of the obstetric ultrasound examination and are unprepared for a diagnosis of foetal anomaly. Research that gives voice to the experiences of immigrants faced with a prenatal diagnosis is scarce, and there is a need for more exploratory research that provides insights into the experiences of these persons. The aim of this study was to explore narratives of experiences of immigrants with Arabic or Sorani interpreter needs when presented with a prenatal diagnosis of foetal anomaly.

    METHODS: A web-based tool with open-ended questions was distributed via Arabic and Kurdish non-profit associations and general women's associations in Sweden. Responses were received from six women and analysed with qualitative content analysis.

    RESULTS: The analysis resulted in three themes: (1) an unexpected hurricane of emotions, (2) trying to understand the situation though information in an unfamiliar language, and (3) being cared for in a country with accessible obstetric care and where induced abortion is legal.

    CONCLUSIONS: Immigrant women described an unexpected personal tragedy when faced with a prenatal diagnosis of foetal anomaly, and emphasised the importance of respectful and empathic psychological support. Their experiences of insufficient and incomprehensible information call attention to the importance of tailored approaches and the use of adequate medical interpreting services. There is a need for more descriptive studies that investigate decision-making and preparedness for induced abortion among immigrants faced with a prenatal diagnosis.

  • 8.
    Carlsson, Tommy
    et al.
    Uppsala universitet.
    Bergman, Gunnar
    Karolinska institutet.
    Karlsson, Anna-Malin
    Uppsala universitet.
    Mattsson, Elisabet
    Uppsala universitet.
    Content and quality of information websites about congenital heart defects following a prenatal diagnosis2015In: Interactive Journal of Medical Research, E-ISSN 1929-073X, Vol. 4, no 1, p. 66-76Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Pregnant women and their partners use the Internet to search for information following a prenatal diagnosis of congenital heart defect. OBJECTIVE: Our aim was to explore central subjects of content and to assess the accessibility, reliability, usability, and quality of written information on publicly available information websites about congenital heart defects following a prenatal diagnosis. METHODS: Following searches on Bing and Google, we included websites containing patient information in English. Hits ranged from 340,000-67,500,000 and the first 50 hits from each search were screened for inclusion (N=600). Of these hits, 39.3% (236/600) were irrelevant. A total of 67 websites were included, of which 37% (25/67) were affiliated with independent information websites, 25% (17/67) with charity/private organizations, 25% (17/67) with hospitals/clinics, and 13% (8/67) had other affiliations. The majority of the websites (76%, 51/67) could not be attributed to an author. A manifest content analysis was performed to explore central subjects of content. The DISCERN instrument was used to assess the quality of information, and the LIDA tool was used to assess accessibility, usability, and reliability of the included websites. RESULTS: The content on the majority of the websites included care and treatment of children with congenital heart defects (88%, 59/67), causes of congenital heart defects (88%, 59/67), symptoms of congenital heart defects (85%, 57/67), prevalence of congenital heart defects (81%, 54/67), potential complications of congenital heart defects (75%, 50/67), prenatal diagnostics/screening methods (72%, 48/67), and specific congenital heart defects (72%, 48/67), whereas less than 10% included information about termination of pregnancy (6%, 4/67), care during pregnancy (5%, 3/67), and information specifically directed to partners (1%, 1/67). The mean of the total DISCERN score was 27.9 (SD 9.7, range 16-53). According to the instrument, a majority of the websites were categorized as very poor regarding information about effects of no treatment (88%, 59/67), support for shared decision making (85%, 57/67), achievement of its aims (84%, 56/67), explicit aims (82%, 55/67), risks of each treatment (82%, 55/67), how treatment choices affect overall quality of life (76%, 51/67), and areas of uncertainty (76%, 51/67). The mean of the total LIDA score was 92.3 (SD 13.1, range 61-127). According to the tool, a majority of the websites were categorized as good with regard to registration (97%, 65/67) and browser test (75%, 50/67), whereas a majority were categorized as poor with regard to currency (87%, 58/67), content production (84%, 56/67), and engagability (75%, 50/67). CONCLUSIONS: Difficulties in finding relevant information sources using Web search engines and quality deficits on websites are an incentive for health professionals to take an active part in providing adequate and reliable information online about congenital heart defects.

  • 9.
    Carlsson, Tommy
    et al.
    Uppsala universitet.
    Bergman, Gunnar
    Karolinska institutet.
    Karlsson, Anna-Malin
    Uppsala universitet.
    Wadensten, Barbro
    Uppsala universitet.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Experiences of termination of pregnancy for a fetal anomaly: A qualitative study of virtual community messages.2016In: Midwifery, ISSN 0266-6138, E-ISSN 1532-3099, Vol. 41, p. 54-60Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: to explore experiences described by posters in Swedish virtual communities before, during and after termination of pregnancy due to a fetal anomaly.

    DESIGN: cross-sectional qualitative study of messages in virtual communities. The messages were purposefully selected in 2014 and analyzed with inductive qualitative manifest content analysis.

    SETTING: two large and active Swedish virtual communities.

    SAMPLE: 1623 messages from 122 posters (112 females, 1 male, and 9 did not disclose their sex), written between 2008 and 2014. The majority of the posters were females (91%) with recent experience of termination of pregnancy following different prenatal diagnoses (63% less than one year since the termination).

    MEASUREMENTS AND FINDINGS: before the termination, posters experienced an emotional shock and a difficult decision. During the termination, they needed compassionate care from present caregivers, experienced intense emotional and physical pain, lacked an understanding about the abortion, and expressed varied feelings about the option to view the fetus. After the termination, posters used different strategies to come to terms with and accept the decision, experienced a perinatal loss, expressed fears of recurrence, and longed for a new child.

    KEY CONCLUSIONS: spanning across the time before, during and after the abortion, women who terminate a pregnancy due to a fetal anomaly express considerable physical and emotional pain, with psychosocial and reproductive consequences.

    IMPLICATIONS FOR PRACTICE: information and preparation, including the decision whether or not to view the fetus, are important aspects to consider when caring for individuals who have decided to terminate a pregnancy for a fetal anomaly. The findings indicate a need for structures that offer support to women who suffer from fears of recurrence in future pregnancies.

  • 10.
    Carlsson, Tommy
    et al.
    Uppsala universitet.
    Bergman, Gunnar
    Karolinska institutet.
    Melander Marttala, Ulla
    Uppsala universitet.
    Wadensten, Barbro
    Uppsala universitet.
    Mattsson, Elisabet
    Uppsala universitet.
    Information following a Diagnosis of Congenital Heart Defect: Experiences among Parents to Prenatally Diagnosed Children2015In: PLOS ONE, E-ISSN 1932-6203, Vol. 10, no 2Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Prenatal screening of pregnant women in Sweden has improved the detection of major congenital heart defects (CHD). The aim was to explore parental experiences and need for information following a prenatal diagnosis of CHD. METHODS: Semi-structured interviews conducted with six fathers and five mothers to seven prenatally diagnosed children. Data were analyzed through content analysis. RESULTS: Three themes and 9 categories emerged. Theme 1, Grasping the facts today while reflecting on the future, containing five categories: Difficulties sorting out information when in emotional chaos; Respectful information regarding termination of pregnancy; Early information is crucial; Understanding the facts regarding the anomaly; Preparing for the future. Theme 2, Personal contact with medical specialists who give honest and trustworthy information is valued, containing two categories: Trust in information received from medical specialists and Truth and honesty is valued. Theme 3, An overwhelming amount of information on the Internet, containing two categories: Difficulties in finding relevant information and Easy to focus on cases with a poor outcome when searching the Internet. CONCLUSION: Early and honest information in line with individual preferences is crucial to support the decisional process regarding whether to continue or terminate the pregnancy. The use of illustrations is recommended, as a complement to oral information, as it increases comprehension and satisfaction with obtained information. Furthermore, the overwhelming amount of information on the Internet calls for compilation of easily accessible and reliable information sources via the Internet.

  • 11.
    Carlsson, Tommy
    et al.
    Uppsala universitet.
    Bergman, Gunnar
    Karolinska institutet.
    Wadensten, Barbro
    Uppsala universitet.
    Mattsson, Elisabet
    Uppsala universitet.
    Experiences of Informational Needs and Received Information Following a Prenatal Diagnosis of Congenital Heart Defect2016In: Prenatal Diagnosis, ISSN 0197-3851, E-ISSN 1097-0223, Vol. 36, no 6, p. 515-522Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To explore the need for information and what information was actually received following a prenatal diagnosis of a congenital heart defect, in a country where termination of pregnancy beyond 22 weeks of gestation is not clinically performed. METHODS: Twenty-six Swedish-speaking pregnant women (n = 14) and partners (n = 12) were consecutively recruited for semi-structured telephone interviews following the prenatal diagnosis of congenital heart defect. Data was analyzed using content analysis. RESULTS: Although high satisfaction with the specialist information was described, the information was considered overwhelming and complex. Objective, honest and detailed information about multiple subjects were needed, delivered repeatedly and supplemented by written information/illustrations. Eighteen respondents had used the Internet to search for information and found issues involving searching difficulties, low quality, and that it was too complex, insufficient or unspecific. Those who terminated the pregnancy criticized that there was a lack of information about termination of pregnancy, both from health professionals and online sources, resulting in unanswered questions and unpreparedness. CONCLUSION: Individuals faced with a prenatal diagnosis of a congenital heart defect need individualized and repeated information. These needs are not all adequately met, as individuals are satisfied with the specialist consultation but left with unanswered questions regarding pregnancy termination.

  • 12.
    Carlsson, Tommy
    et al.
    Röda Korsets högskola; Uppsala universitet.
    Klarare, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Peer support among parents of children with congenital heart defects: A qualitative analysis of written responses submitted via an online survey2020In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 76, no 12, p. 3528-3536Article in journal (Refereed)
    Abstract [en]

    AIM: To explore experiences of peer support among parents of children with congenital heart defects.

    DESIGN: A study analysing written responses to open-ended questions about peer support, collected via an online survey distributed in Sweden.

    METHODS: Respondents were recruited during 3 months in 2018 by means of convenience sampling, through ads via the Swedish foundation for families with children who have heart defects and two closed Facebook groups for peer support. An online survey containing open-ended questions was distributed and responses were analysed with systematic text condensation.

    RESULTS: Peer support was grounded in a mutual understanding among parents and involved highly appreciated emotional support. Listening to the stories of peers meant an opportunity to gain useful insights about what life is like for parents of children with heart defects. Receiving and providing peer support was described as rewarding on a personal level. Negative aspects of peer support were also described, which sometimes led to psychological distress and withdrawal from peer support activities.

    CONCLUSION: Peer support is emotionally relieving and appreciated among parents of children with congenital heart defects, who consider providing the support a rewarding responsibility. While peer support activities may have considerable benefits for individuals, it may also lead to psychological distress for some.

    IMPACT: This study addressed peer support among parents of children with congenital heart defects. The main findings illustrate the potential impact peer support can have on individuals and calls attention to the experienced benefits related to peer support activities, while also providing some insights regarding potential negative aspects. The findings have relevance for nurses, midwives, and other health professionals working in settings providing care for these families.

  • 13.
    Carlsson, Tommy
    et al.
    Uppsala universitet.
    Landqvist, Mats
    Södertörns högskola.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Communication of support and critique in Swedish virtual community threads about prenatal diagnoses of fetal anomalies.2016In: BMC Pregnancy and Childbirth, ISSN 1471-2393, E-ISSN 1471-2393, Vol. 16, no 1Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: A prenatal diagnosis of a fetal anomaly involves acute grief and psychological distress. The Internet has the potential to provide virtual support following the diagnosis. The overall aim was to explore communication of support and critique in Swedish virtual community threads about prenatal diagnoses of fetal anomalies.

    METHODS: Systematic searches in Google resulted in 117 eligible threads. Fifteen of these were purposefully selected and subjected to deductive content analysis.

    RESULTS: The virtual support involved mainly emotional support (meaning units n = 1,992/3,688, 54 %) and was described as comforting and empowering. Posters with experience of a prenatal diagnosis appreciated the virtual support, including the opportunity to gain insight into other cases and to write about one's own experience. Critique of the decision to continue or terminate the pregnancy occurred, primarily against termination of pregnancy. However, it was met with defense.

    CONCLUSIONS: Peer support, mainly emotional, is provided and highly appreciated in threads about prenatal diagnoses of a fetal anomaly. Critique of the decision to terminate the pregnancy occurs in virtual community threads about prenatal diagnoses, but the norm is to not question the decision. Future studies need to investigate if virtual peer support promotes psychosocial function following a prenatal diagnosis and what medium would be most suitable for these types of supportive structures.

  • 14.
    Carlsson, Tommy
    et al.
    Uppsala universitet.
    Marttala, Ulla Melander
    Uppsala universitet.
    Mattsson, Elisabet
    Ersta Sköndal University College, Department of Health Care Sciences. Uppsala universitet.
    Ringnér, Anders
    Umeå universitet.
    Experiences and preferences of care among Swedish immigrants following a prenatal diagnosis of congenital heart defect in the fetus: A qualitative interview study.2016In: BMC Pregnancy and Childbirth, ISSN 1471-2393, E-ISSN 1471-2393, Vol. 16, no 1Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Immigrants experience significant challenges when in contact with healthcare and report less satisfaction with maternity care compared to native Swedes. Research that gives voice to pregnant immigrant women and their partners following a prenatal diagnosis of a fetal anomaly is scarce. Thus, the aim of this study was to explore experiences and preferences of care following a prenatal diagnosis of congenital heart defect among Swedish immigrants.

    METHODS: Pregnant immigrants and their partners were consecutively recruited following a prenatal diagnosis of a congenital heart defect in the fetus. Nine respondents were interviewed in five interviews, four with the aid of a professional interpreter. The material was analyzed using manifest qualitative content analysis.

    RESULTS: The analysis resulted in five categories: 1) "Trustworthy information", 2) "Language barriers", 3) "Psychosocial situation", 4) "Peer support", and 5) "Religious positions".

    CONCLUSION: The potential need for interpreter services, visual information, psychosocial support, coordination with welfare officers, and respect for religious positions about termination of pregnancy are all important aspects for health professionals to consider when consulting immigrants faced with a prenatal diagnosis of fetal anomaly in the fetus. Peer support within this context needs to be further explored in future studies.

  • 15.
    Carlsson, Tommy
    et al.
    Uppsala universitet.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Emotional and cognitive experiences during the time of diagnosis and decision-making following a prenatal diagnosis: A qualitative study of males presented with congenital heart defect in the fetus carried by their pregnant partner.2018In: BMC Pregnancy and Childbirth, ISSN 1471-2393, E-ISSN 1471-2393, Vol. 18, no 1, article id 26Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Expectant fathers consider the second-trimester obstetric ultrasound examination as an important step towards parenthood, but are ill prepared for a detection of a fetal anomaly. Inductive research is scarce concerning their experiences and needs for support. Consequently, the aim of this study was to explore the emotional and cognitive experiences, during the time of diagnosis and decision-making, among males presented with congenital heart defect in the fetus carried by their pregnant partner.

    METHODS: Twelve expectant fathers were consecutively recruited through two tertiary referral centers for fetal cardiology in Sweden, after they had been presented with a prenatal diagnosis of congenital heart defect in the fetus carried by their pregnant partner. The respondents were interviewed via telephone, and the interviews were analyzed using inductive qualitative content analysis.

    RESULTS: The respondents experienced an intense emotional shock in connection with detection. However, they set their own needs aside to attend to the supportive needs of their pregnant partner, and stressed the importance of an informed joint decision regarding whether to continue or terminate the pregnancy. When terminating the pregnancy, they experienced a loss of a wanted child, an emotionally intense termination procedure, needs of support neglected by professionals, and worries about the risk of recurrence in future pregnancies. When continuing the pregnancy, they tried to keep a positive attitude about the coming birth, but were simultaneously worried about the postnatal situation.

    CONCLUSIONS: The findings illustrate the importance of inclusive care and adequate follow-up routines for both expectant parents following a prenatal diagnosis. This includes the initial emotional shock, the decisional process, and depending on decision reached, the termination or continuation of the pregnancy. Expectant fathers presented with a fetal anomaly need adequate follow-up routines to address worries about risk of recurrence in future pregnancies and worries about the postnatal situation.

  • 16.
    Carlsson, Tommy
    et al.
    Uppsala universitet; Röda Korset Högskola.
    Mattsson, Elisabet
    Marie Cederschiöld University, Department of Health Care Sciences. Uppsala universitet.
    Peer Support Experienced by Mothers of Children With Congenital Heart Defects in Sweden2022In: Journal of Family Nursing, ISSN 1074-8407, E-ISSN 1552-549X, Vol. 28, no 2, p. 142-150Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to describe experiences of peer support among mothers of children with congenital heart defects. Ten mothers were interviewed through a semi-structured approach and interviews were analyzed with systematic text condensation. The respondents established various channels used for peer support and navigated between the channels depending on what type of information or support they needed. Through the channels, they found peers they developed strong friendships with and who they relied on for emotional support. Communicating with peers involved the reciprocal exchange of unique emotional support between peers who understand each other as well as the exchange of information derived from their collective knowledge, and thus, difficult to find without the help of peers. The findings illustrate the potential strengths of establishing reliable collaboration and liaisons between clinical units and peer support networks.

  • 17.
    Carlsson, Tommy
    et al.
    Uppsala universitet; Röda Korsets Högskola.
    Melander Marttala, Ulla
    Uppsala universitet.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Being involved in research as a collaborator with experience of a prenatal diagnosis of congenital heart defect in the fetus: A qualitative study2020In: Research Involvement and Engagement, E-ISSN 2056-7529, Vol. 6, no 10, p. 1-8, article id 10 (2020)Article in journal (Refereed)
    Abstract [en]

    Background: An increasing number of research projects are now collaborating with persons who have lived experience of a specific health-related situation, such as a prenatal diagnosis of congenital heart defect. Such collaboration has the potential to provide valuable insights how to plan future studies, but little is known how these persons experience such involvement. The aim was to explore how persons with lived experience of a prenatal diagnosis perceived collaborating in a research project utilizing patient and public involvement to identify relevant research questions and develop suitable interventions.

    Methods: Persons with experience of a prenatal diagnosis of congenital heart defect in the fetus were interviewed after their participation in a yearlong collaborative research project (n = 9) aiming to explore relevant research questions and develop interventions for expectant parents with a recent prenatal diagnosis. Interviews were analyzed with qualitative content analysis.

    Results: Respondents acknowledged altruistic and personal value related to the collaboration. They valued the opportunity to contribute to future research so that the care of persons experiencing a prenatal diagnosis may be improved. Mixed feelings were described related to sharing and reliving experiences. While it had been emotionally difficult to relive a traumatic event, it also served as an opportunity to process experiences and psychologically adapt. Respondents with terminated pregnancies appreciated the possibility to meet peers, since it was difficult to find peers in everyday life and talk about their experiences with others.

    Conclusions: Researchers who plan to collaborate with persons who have experience of a prenatal diagnosis should be mindful of the potential associated emotional experiences. The appreciation related to meeting peers calls attention to the need for studies that explore peer support.

  • 18.
    Carlsson, Tommy
    et al.
    Uppsala universitet.
    Melander Marttala, Ulla
    Uppsala universitet.
    Wadensten, Barbro
    Uppsala universitet.
    Bergman, Gunnar
    Karolinska institutet.
    Axelsson, Ove
    Uppsala universitet.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Quality of Patient Information Websites About Congenital Heart Defects: Mixed-Methods Study of Perspectives Among Individuals With Experience of a Prenatal Diagnosis.2017In: Interactive Journal of Medical Research, E-ISSN 1929-073X, Vol. 6, no 2Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: When a heart defect is prenatally diagnosed in the fetus, expectant parents experience a great need for information about various topics. After the diagnosis, the Web is used for supplemental information, and the scarcity of research calls attention to the need to explore patient information websites from the perspectives of the intended consumers. OBJECTIVE: The overarching aim of this study was to explore the quality of Swedish patient information websites about congenital heart defects, from the perspectives of individuals with experience of a prenatal diagnosis of congenital heart defect in the fetus. METHODS: This was a mixed-methods study of websites identified through systematic searches in the two most used Web-based search engines. Of the total 80 screened hits, 10 hits led to patient information websites about congenital heart defects. A quality assessment tool inspired by a previous study was used to evaluate each website’s appearance, details, relevance, suitability, information about treatment choices, and overall quality. Answers were given on a 5-point Likert scale, ranging from 1, representing the lowest score, to 5, representing the highest score. Each website was assessed individually by persons with experience of continued (n=4) and terminated (n=5) pregnancy following a prenatal diagnosis. Assessments were analyzed with Kendall’s coefficient of concordance W, Mann-Whitney U test, Friedman’s test, and a Wilcoxon-Nemenyi-McDonald-Thompson test. In addition, each assessor submitted written responses to open-ended questions in the quality assessment tool, and two joint focus group discussions were conducted with each group of assessors. The qualitative data were analyzed with inductive manifest content analysis. RESULTS: Assessments represented a low score (median=2.0) for treatment choices and moderate scores (median=3.0) for appearance, details, relevance, suitability, and overall quality. No website had a median of the highest achievable score for any of the questions in the quality assessment tool. Medians of the lowest achievable score were found in questions about treatment choices (n=4 websites), details (n=2 websites), suitability (n=1 website), and overall quality (n=1 website). Websites had significantly different scores for appearance (P=.01), details (P<.001), relevance (P<.001), suitability (P<.001), treatment choices (P=.04), and overall quality (P<.001). The content analysis of the qualitative data generated six categories: (1) advertisements, (2) comprehensiveness, (3) design, (4) illustrations and pictures, (5) language, and (6) trustworthiness. Various issues with the included websites were highlighted, including the use of inappropriate advertisements, biased information, poor illustrations, complex language, and poor trustworthiness. CONCLUSIONS: From the perspectives of the intended consumers, patient information websites about congenital heart defects are, to a large extent, inadequate tools for supplemental information following a prenatal diagnosis. Health professionals should initiate discussions with patients about their intentions to use the Web, inform them about the varied quality in the Web-based landscape, and offer recommendations for appropriate Web-based sources.

  • 19.
    Carlsson, Tommy
    et al.
    Uppsala universitet.
    Melander Marttala, Ulla
    Uppsala universitet.
    Wadensten, Barbro
    Uppsala universitet.
    Bergman, Gunnar
    Karolinska institutet.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Involvement of persons with lived experience of a prenatal diagnosis of congenital heart defect: An explorative study to gain insights into perspectives on future research2016In: Research Involvement and Engagement, E-ISSN 2056-7529, Vol. 2, p. 1-13, article id 35Article in journal (Refereed)
    Abstract [en]

    Background: A prenatal diagnosis of a congenital heart defect in the fetus is a traumatic life event for pregnant women and their partners. Previous research indicates a need for research that takes steps to support these individuals following the diagnosis. Patient and public involvement is a proposed method of identifying relevant research topics, leading to patient-focused research protocols and relevant support interventions.The overarching aim of this study was to gain insights into relevant future research topics among persons faced with a prenatal diagnosis of congenital heart defect in the fetus.

    Methods: One group of parents to prenatally diagnosed children with a congenital heart defect (n = 5) and one group of individuals with experience of termination of a pregnancy following a prenatal diagnosis of a congenital heart defect (n = 5) were purposefully recruited. Each group of representatives was involved in a face-to-face focus group discussion, analyzed through qualitative content analysis.

    Results: The representatives suggested a need for future research that addresses informational support in the forms as supplemental written information or follow-up consultations. Moreover, interventions that offer emotional support were suggested, in the forms of peer support or additional professional psychosocial support. Conclusion Several interventions were suggested by patient representatives, indicating a need for multiple intervention studies to be conducted in the context of a prenatal diagnosis of a congenital heart defect in the fetus. We recommend that future studies test supplemental written information, follow-up consultations, peer support, and additional professionals psychosocial support following the diagnosis.

  • 20.
    Carlsson, Tommy
    et al.
    Uppsala universitet.
    Starke, Veronica
    Uppsala universitet.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    The emotional process from diagnosis to birth following a prenatal diagnosis of fetal anomaly: A qualitative study of messages in online discussion boards2017In: Midwifery, ISSN 0266-6138, E-ISSN 1532-3099, Vol. 48, p. 53-59Article in journal (Refereed)
    Abstract [en]

    Objective: to explore written statements found in online discussion boards where parents currently expecting, or with previous experience of expecting, a child with a prenatally diagnosed congenital anomaly communicate about their emotional process from diagnosis to birth. Design: cross-sectional qualitative study of messages in public online discussion boards. Setting: Swedish public discussion boards about reproductive subjects. Sample: ten pregnant women and eight parents (of children with prenatal diagnoses) who had written 852 messages in five threads in Swedish online discussion boards identified via systematic searches. Measurements and findings: three phases were identified in the process of moving from the diagnosis to the birth: shock, existential crisis, and life remodeling. The people posting message (‘posters’) moved from initial shock to existential crisis and, lastly, a phase of remodeling life later in the pregnancy. During the pregnancy, considerable worries about both antenatal and postnatal aspects were expressed. To cope with their situation, the posters distanced themselves from the diagnoses, vented their feelings, sought control, and obtained practical support from friends and relatives. Key conclusions: expectant parents faced with a prenatal diagnosis move from initial shock to a phase of life remodeling and acceptance. Burdened with considerable worries, expectant parents cope with their situation through informational, emotional, and instrumental support from health professionals, family, friends, and peers. Implications for practice: health professionals should make sure that expectant parents feel involved in planning their children’s postnatal care, that they are offered sufficient information, and that they have access to emotional and instrumental support structures. 

  • 21.
    Engvall, Gunn
    et al.
    Uppsala universitet.
    Cernvall, Martin
    Uppsala universitet.
    Larsson, Gunnel
    Uppsala universitet.
    von Essen, Louise
    Uppsala universitet.
    Mattsson, Elisabet
    Uppsala universitet.
    Cancer during adolescence: negative and positive consequences reported three and four years after diagnosis2011In: PLOS ONE, E-ISSN 1932-6203, Vol. 6, no 12Article in journal (Refereed)
    Abstract [en]

    Persons diagnosed with cancer during adolescence have reported negative and positive cancer-related consequences two years after diagnosis. The overall aim was to longitudinally describe negative and positive cancer-related consequences reported by the same persons three and four years after diagnosis. A secondary aim was to explore whether reports of using vs. not using certain coping strategies shortly after diagnosis are related to reporting or not reporting certain consequences four years after diagnosis. Thirty-two participants answered questions about coping strategies shortly after diagnosis and negative and positive consequences three and four years after diagnosis. Answers about consequences were analysed with content analysis, potential relations between coping strategies and consequences were analysed by Fisher’s exact test. The great majority reported negative and positive consequences three and four years after diagnosis and the findings indicate stability over time with regard to perceived consequences during the extended phase of survival. Findings reveal a potential relation between seeking information shortly after diagnosis and reporting a more positive view of life four years after diagnosis and not using fighting spirit shortly after diagnosis and not reporting good self-esteem and good relations four years after diagnosis. It is concluded that concomitant negative and positive cancer-related consequences appear stable over time in the extended phase of survival and that dialectical forces of negative and positive as well as distress and growth often go hand-in-hand after a trauma such as cancer during adolescence.

  • 22.
    Engvall, Gunn
    et al.
    Uppsala universitte.
    Mattsson, Elisabet
    Uppsala universitet.
    von Essen, Louise
    Uppsala universitet.
    Hedström, Mariann
    Uppsala universitet.
    Findings on how adolescents cope with cancer: a matter of methodology?2011In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 20, no 10, p. 1053-1060Article in journal (Refereed)
    Abstract [en]

    Objectives: The various conclusions drawn from previous studies on how adolescents cope with cancer might partly be explained by methodological issues. The aim was to explore how adolescents recently diagnosed with cancer report that they cope with disease- and treatment-related distress in response to closed- and open-ended questions, respectively.Methods: Adolescents diagnosed with cancer 4-8 weeks ago (N=56) answered closed- and open-ended questions over the telephone about which coping strategies they use to cope with physical concerns, personal changes, feelings of alienation, and worries.Results: In response to closed-ended questions, most adolescents reported using emotion-focused coping (Accepting and Minimising) while, in response to open-ended questions, meaning-based (i.e. Positive thinking) and problem-focused (i.e. Problem solving) coping were most often mentioned. A majority reported using Minimising and Seeking support in response to closed-ended questions, but very few adolescents mentioned using these strategies in response to open-ended questions.Conclusions: Adolescents’ reports of how they cope with disease- and treatment-related distress vary depending on antecedent closed- and open-ended questions. Responses to closed-ended questions appear to be more indifferent to aspects of distress than responses to open-ended questions. Strategies representing meaning-based coping should be included in future studies investigating how adolescents recently diagnosed with cancer cope with disease- and treatment-related distress.

  • 23.
    Engvall, Gunn
    et al.
    Uppsala universitet.
    Skolin, Inger
    Karolinska institutet.
    Mattsson, Elisabet
    Uppsala universitet.
    Hedström, Mariann
    Uppsala universitet.
    von Essen, Louise
    Uppsala universitet.
    Are nurses and physicians able to assess which strategies adolescents recently diagnosed with cancer use to cope with disease- and treatment-related distress?2011In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 19, no 5, p. 605-611Article in journal (Refereed)
    Abstract [en]

    PURPOSE: It was examined whether nurses and physicians are able to identify whether adolescents with cancer have used certain strategies to cope with disease- and treatment-related distress. METHOD: Adolescents (N = 48) were asked whether they had used a number of strategies to cope with disease- and treatment-related distress and, if so, the extent to which they had used these. Nurses and physicians were asked to answer the same questions on behalf of a certain adolescent. RESULTS: Nurses overestimate the extent to which adolescents use strategies to cope with distress, and neither nurses nor physicians, physicians somewhat more, are successful in identifying the extent to which certain adolescents use strategies. CONCLUSION: Health-care staff’s possibilities to assess how patients cope with disease- and treatment-related distress should be increased. A number of changes in education and the organization of clinical care, especially with regard to assessing patients’ needs, are suggested.

  • 24.
    Gaber, Sophie
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Klarare, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Karlsson Rosenblad, Andreas
    Uppsala universitet.
    A comparison of perceptions of caring behaviours among women in homelessness, Registered Nurses and nursing students2023In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 37, no 4, p. 959-969Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The population of women in homelessness in Europe is increasing and women in homelessness experience multiple healthcare needs. However, there is insufficient understanding about how perceptions of caring behaviours compare between women in homelessness as patients and nurses in their clinical practice.

    AIM: This study aimed to investigate perceptions of caring behaviours among women in homelessness, Registered Nurses and nursing students.

    METHODS: A cross-sectional design was used with convenience sampling to recruit groups of women in homelessness (n = 37), Registered Nurses (n = 92) and nursing students (n = 142) in Stockholm, Sweden. Between August 2019 and December 2020, data were collected through face-to-face interviews or online, using the Caring Behaviours Inventory-24 instrument. Data were analysed using descriptive statistics and group-comparing hypothesis tests.

    RESULTS: Overall, women in homelessness' perceptions of caring behaviours were significantly lower than nursing students (p < 0.001), who in turn scored significantly lower than Registered Nurses (p < 0.001). The Knowledge and Skill domain had the highest score, and the Connectedness domain had the lowest score in all three groups. The ranking of the individual items according to score varied between the groups. However, all three groups had the highest score for the Knowing how to give shots, IVs, etc., item and the lowest score for the Helping the patient to grow item.

    CONCLUSION: Healthcare providers and nurse educators should consider incongruences and congruences in caring behaviours to better prepare Registered Nurses and nursing students to contribute to increased health equity, and more targeted clinical practice for women in homelessness.

  • 25.
    Gaber, Sophie
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences. Uppsala universitet.
    Rosenblad, Andreas Karlsson
    Uppsala universitet; Karolinska institutet.
    Mattsson, Elisabet
    Marie Cederschiöld University, Department of Health Care Sciences. Uppsala universitet.
    Klarare, Anna
    Marie Cederschiöld University, Department of Health Care Sciences. Uppsala universitet.
    The relationship between attitudes to homelessness and perceptions of caring behaviours: A cross-sectional study among women experiencing homelessness, nurses and nursing students2022In: BMC Women's Health, E-ISSN 1472-6874, Vol. 22, no 1, article id 159Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Women experiencing homelessness have complex and multifaceted healthcare needs and yet they are an underserved population across healthcare services. Nurses are trained to perform an integral role in the provision of equitable healthcare and their attitudes towards homelessness may therefore influence the care that women experiencing homelessness receive. This study aimed to examine correlations between attitudes towards homelessness and caring behaviours, and to test if these correlations differed between the groups of women experiencing homelessness, registered nurses, and nursing students.

    METHODS: A cross-sectional design using convenience sampling was used to recruit women experiencing homelessness (n = 37), registered nurses (n = 90), and nursing students (n = 138) in Stockholm, Sweden between August 2019 and December 2020. The participants answered two questionnaires: the Attitudes Toward Homelessness Inventory and the Caring Behaviours Inventory-24. Correlations between ordinal variables were calculated using Spearman's rank correlation ρ. Tests of equality between two independent correlations were performed using a Z-test applied to Fisher's z-transformed correlations. An advisory board of women with lived experience of homelessness supported the interpretation of the results.

    RESULTS: Weak, negative correlations were identified between the Attitudes Toward Homelessness Inventory and Caring Behaviours Inventory-24. The Attitudes Toward Homelessness Inventory mean total scores (SD) were 4.1 (0.6), 4.2 (0.6), 4.1 (0.5) points for the women experiencing homelessness, registered nurse, and nursing student groups, respectively, with the corresponding scores for the Caring Behaviours Inventory-24 being 4.1 (1.1), 5.2 (0.5), 4.8 (0.7) points, respectively.

    CONCLUSIONS: To promote equitable health for women experiencing homelessness, healthcare providers and nurse educators should consider the role of stigmatising attitudes in relation to caring behaviours.

  • 26.
    Gerhardsson, Emma
    et al.
    Uppsala universitet.
    Hildingsson, Ingegerd
    Uppsala universitet.
    Mattsson, Elisabet
    Uppsala universitet.
    Funkquist, Eva-Lotta
    Uppsala universitet.
    Prospective questionnaire study showed that higher self-efficacy predicted longer exclusive breastfeeding by the mothers of late preterm infants.2018In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 107, no 5, p. 799-805Article in journal (Refereed)
    Abstract [en]

    AIM: An important variable that influences breastfeeding outcomes is how confident a woman feels about her ability to breastfeed successfully at an early stage. We investigated breastfeeding self-efficacy in the mothers of late preterm infants.

    METHODS: This was a prospective, comparative study that focused on mothers who had delivered babies at 34 + 0 to 36 + 6 weeks and were recruited in 2012-2015 from a neonatal intensive care unit and a postnatal ward at a Swedish university hospital. The Breastfeeding Self-Efficacy Scale-Short Form (BSES-SF) was used to psychometrically assess the mothers at 40 weeks of postmenstrual age (n = 148) and at three months of corrected age (n = 114).

    RESULTS: The BSES-SF scores were higher in the 87% of mothers that exclusively breastfed when their babies reached 40 weeks (57.1 out of 70) than those who did not (41.4, p < 0.001), indicating better self-efficacy. The figures remained higher in the 68% of exclusive breastfeeding mothers at three months of corrected age (60.9 versus 51.7).

    CONCLUSION: Self-efficacy was an important predictor of the length of breastfeeding in mothers of late preterm infants, and the BSES-SF can be used to detect low self-efficacy that could lead to early breastfeeding cessation.

  • 27.
    Gerhardsson, Emma
    et al.
    Akademiska sjukhuset, universitetssjukhus i Uppsala..
    Nyqvist, Kerstin Hedberg
    Uppsala universitet.
    Mattsson, Elisabet
    Uppsala universitet.
    Volgsten, Helena
    Uppsala universitet.
    Hildingsson, Ingegerd
    Uppsala universitet.
    Funkquist, Eva-Lotta
    Uppsala universitet.
    The Swedish Version of the Breastfeeding Self-Efficacy Scale-Short Form: Reliability and Validity Assessment2014In: Journal of Human Lactation, ISSN 0890-3344, E-ISSN 1552-5732, Vol. 30, no 3, p. 340-345Article in journal (Refereed)
    Abstract [en]

    Background: Among Swedish mothers, breastfeeding duration has been declining in recent years. An instrument for early identification of women at risk for shorter breastfeeding duration may be useful in reversing this trend. Objectives: The aims of this study were to translate and psychometrically test the Swedish version of the Breastfeeding Self-Efficacy Scale-Short Form (BSES-SF), examine the relationship between breastfeeding self-efficacy and demographic variables, and evaluate associations with breastfeeding continuation plans in Swedish mothers. Methods: The BSES-SF was translated into Swedish using forward and back translation. The sample consisted of 120 mothers who, during the first week postpartum, came for a routine follow-up visit at the postnatal unit in a university hospital. The mothers were compared based on demographic data and their future breastfeeding plans. Results: The Cronbach’s alpha coefficient for internal consistency for the BSES-SF was 0.91 and the majority of correlation coefficients exceeded 0.3. A 1-factor solution was found that explained 46% of the total variance. There was no difference in confidence in breastfeeding between mothers with early hospital discharge and mothers who received postnatal care at the hospital. Primiparas who stayed longer at the hospital were less confident in breastfeeding than primiparas who had a shorter hospital stay. Breastfeeding mothers who planned to partially breastfeed in the near future had lower BSES-SF scores, compared to those who planned to continue exclusive breastfeeding. Conclusion: The Swedish version of the BSES-SF has good reliability, validity, and agreement with mothers’ plans regarding breastfeeding continuation and exclusivity.

  • 28.
    Gerhardsson, Emma
    et al.
    Uppsala universitet.
    Oras, Paola
    Uppsala universitet.
    Mattsson, Elisabet
    Uppsala universitet.
    Blomqvist, Ylva Thernström
    Uppsala universitet.
    Funkquist, Eva-Lotta
    Uppsala universitet.
    Health care professionals report positive experience with a breastfeeding training program based on the Baby-Friendly Hospital Initiative for Neonatal Intensive Care2023In: Journal of Neonatal Nursing, ISSN 1355-1841, E-ISSN 1878-089X, Vol. 29, no 1, p. 75-80Article in journal (Refereed)
    Abstract [en]

    Support from health care professionals (HCPs) with good knowledge and positive attitudes toward breastfeeding has been associated with better breastfeeding outcomes in the mothers of preterm infants. The aim of the study was to describe HCPs' experiences of a breastfeeding training program. A total of 48 specialist registered nurses, registered nurses, assistant nurses and physicians working at a neonatal intensive care unit attended a breastfeeding training program and answered a questionnaire including Likert scales and open-ended questions. The participants reported that their interest in breastfeeding had increased as a median (range) of 10 (8–10) on a 10-point scale and rated to what extent they had received new tools for breastfeeding support as a median of 10 (8–10) after training. There were no differences in the median between different professions' ratings. Qualitative content analysis of the open-ended questions resulted in two categories: Discussions of the case scenarios in the group and Knowledge regarding breastfeeding. The results showed that discussions based on breastfeeding scenarios were perceived as valuable; the health care professionals reported receiving new knowledge and useful practical skills. This program was shown to increase health care professionals’ interest in breastfeeding and is useful for different health care professions.

  • 29.
    Gerhardsson, Emma
    et al.
    Uppsala universitet.
    Oras, Paola
    Uppsala universitet.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Blomqvist, Ylva Thernström
    Uppsala universitet.
    Funkquist, Eva-Lotta
    Uppsala universitet.
    Rosenblad, Andreas
    Uppsala universitet.
    Developing the preterm breastfeeding attitudes instrument: A tool for describing attitudes to breastfeeding among health care professionals in neonatal intensive care2021In: Midwifery, ISSN 0266-6138, E-ISSN 1532-3099, Vol. 94, article id 102919Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The aim of this study was to develop an instrument that measures health care professionals' (HCPs) attitudes to breastfeeding and skin-to-skin contact in relation to the Baby-Friendly Hospital Initiative for neonatal intensive care.

    DESIGN: The study was part of a larger project aiming to revive the Ten Steps to Successful Breastfeeding for both full-term and preterm infants. The study had a pre-test/post-test design using online questionnaires distributed by email before and after a training programme.

    SETTING AND PARTICIPANTS: A total of 70 specialist registered nurses, registered nurses, assistant nurses and physicians working at a Swedish neonatal intensive care unit answered 55 breastfeeding attitudes questions online before the training. The Preterm Breastfeeding Attitudes Instrument (PreBAI) consists of twelve of these 55 items/questions, selected using exploratory factor analysis.

    MEASUREMENTS AND FINDINGS: Higher scores indicated more positive attitudes and the median total PreBAI score was 42 points (out of 48), on both the pre- and the post-test questionnaires, showing no significant difference. In the pre-test questionnaire, the majority of HCPs (84%) stated that they needed further breastfeeding training. They also stated that they perceived breastfeeding as very important, scoring a median of 10 (range 5-10) points on a 10-point scale. Three separate underlying dimensions were identified in the questionnaire, indicating different attitudes: Facilitating (five items), Regulating (four items), and Breastfeeding- and skin-to-skin contact-friendly (three items). A positive correlation was found between how many years the HCPs had worked in neonatal care, and their PreBAI score (rs = 0.383, p = 0.001). Those who had previously received extra breastfeeding education scored higher on the instrument.

    KEY CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: Neonatal intensive care units need to increase their efforts to support breastfeeding. An important factor for mothers when establishing breastfeeding is support from well-trained professionals with a positive attitude to breastfeeding. The PreBAI could be a useful tool for identifying attitudes among HCPs before and after attending a breastfeeding training programme.

  • 30.
    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.

  • 31.
    Gottvall, Maria
    et al.
    The Swedish Red Cross University, Huddinge, Sweden; The Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden.
    Brunell, Calle
    The Swedish Red Cross University, Huddinge, Sweden.
    Eldebo, Anna
    The Swedish Red Cross University, Huddinge, Sweden.
    Kissiti, Rogers
    The Swedish Red Cross University, Huddinge, Sweden.
    Mattsson, Elisabet
    Marie Cederschiöld University, Department of Health Care Sciences. The Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden.
    Jirwe, Maria
    The Swedish Red Cross University, Huddinge, Sweden; The Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institute, Solna, Sweden.
    Carlsson, Tommy
    The Swedish Red Cross University, Huddinge, Sweden; The Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden.
    Nurse education about forced migrants with diverse sexual orientations, gender identities, and gender expressions: An exploratory focus group study2023In: Nurse Education Today, ISSN 0260-6917, E-ISSN 1532-2793, Vol. 128, article id 105880Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: In many countries, forced migrants can seek asylum based on persecution and danger related to self-identifying as having diverse sexual orientations, gender identities, and gender expressions; herein defined as lesbian, gay, bisexual, transgender, queer, or other non-heterosexual orientations, non-cisgender identities, gender expressions and/or reproductive development considered beyond cultural, societal or physiological norms. Nurse education has a significant role in promoting cultural competence among future health professionals.

    OBJECTIVES: To explore the experiences and views regarding education about forced migrants with diverse sexual orientations, gender identities, and gender expressions, among students and lecturers in nurse education.

    DESIGN: Explorative qualitative study with focus group discussions.

    SETTINGS: Swedish nursing programs.

    PARTICIPANTS: Final-year nursing students and lecturers (n = 25 participants) at nursing programs were recruited with convenience and snowball sampling.

    METHODS: Semi-structured digital focus group discussions (n = 9) were audio recorded and transcribed verbatim. Data were analyzed with inductive qualitative content analysis.

    RESULTS: Promoting a broader understanding regarding societal structures and preparing students to provide culturally sensitive care were considered as essential components in nurse education. Challenges and problems involved a need for increased awareness, the associated topics and target populations seldom being addressed, and a need for improvements within clinical placements. Participants suggested the utilization of external resources, presented a range of different specific learning activities that would promote in-depth understanding, and articulated a need for overarching decisions and guidelines regarding mandatory inclusion in nurse education.

    CONCLUSIONS: Students and lecturers describe several challenges and problems that need to be addressed in regard to forced migration, sexual health, and inclusion health. There seems to be a need for utilization of external competence in learning activities as well as establishing clearer guidelines, which may increase the quality of education and better prepare future nurses to support patients with diverse backgrounds and identities.

  • 32.
    Hedberg Nyqvist, Kerstin
    et al.
    Uppsala universitet.
    Rosenblad, Andreas
    Uppsala universitet.
    Volgsten, Helena
    Uppsala universitet.
    Funkquist, Eva-Lotta
    Uppsala universitet.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Early skin-to-skin contact between healthy late preterm infants and their parents: an observational cohort study2017In: PeerJ, E-ISSN 2167-8359, Vol. 5, p. e3949-Article in journal (Refereed)
    Abstract [en]

    Background Skin-to-skin contact (SSC) is an important factor to consider in the care of late preterm infants (born between 34 0/7 and 36 6/7 completed weeks of gestation). The literature suggests that SSC between preterm infants and their mothers facilitates breastfeeding. However, more studies are needed to explore potential dose-response effects between SSC and breastfeeding as well as studies that explicitly investigate SSC by fathers among late preterm infants. The aim was to investigate the duration of healthy late preterm infants’ SSC with the mother and father, respectively, during the first 48 h after birth and the associations with breastfeeding (exclusive/partial at discharged), clinical and demographic variables. Methods This was an observational cohort study in which parents to healthy late preterm infants, born between 34 5/7 and 36 6/7 completed weeks of gestation, recorded duration of SSC provided by mother and father, respectively. Demographic and clinical variables were retrieved from the medical records and were used as predictors. Multiple linear regression analysis was used to assess the association between the predictors and the outcome, SSC (hours), separately for mothers and fathers. Results The mean (standard deviation [SD]) time per day spent with SSC with mothers (n = 64) and fathers (n = 64), was 14.7 (5.6) and 4.4 (3.3) hours during the first day (24 h) after birth and 9.2 (7.1) and 3.1 (3.3) hours during the second day (24 h), respectively. Regarding SSC with mothers, no variable was significantly associated with SSC during the first day, while the mean (95% confidence interval [CI]) time of SSC during the second day was 6.9 (1.4–12.4) hours shorter for each additional kg of birthweight (p = 0.014). Concerning SSC with fathers, the mean (95% CI) time of SSC during the first day was 2.1 (0.4–3.7) hours longer for infants born at night (p = 0.015), 1.7 (0.1–3.2) hours longer for boys (p = 0.033), 3.2 (1.2–5.2) hours longer for infants born by caesarean section (p = 0.003), and 1.6 (0.1–3.1) hours longer for infants exclusively breastfed at discharge (p = 0.040). During the second day, the mean (95% CI) time of SSC with fathers was 3.0 (0.6–5.4) hours shorter for each additional kg of birthweight (p = 0.014), 2.0 (0.5–3.6) hours longer for infants born during night-time (p = 0.011), 2.9 (1.4–4.4) hours longer if the mother was primipara (p &lt; 0.001), and 1.9 (0.3–3.5) hours shorter if supplementary artificial milk feeds were given. None of the other predictors, i.e., mother’s age, gestational age, or induction of labor were significantly associated with infants’ SSC with mothers or fathers during any of the first two days after birth. Conclusion Future studies are warranted that investigate duration of SSC between late preterm infants and their parents separately and the associations with breastfeeding and other variables of clinical importance.

  • 33.
    Jörngården, Anna
    et al.
    Uppsala universitet.
    Mattsson, Elisabet
    Uppsala universitet.
    von Essen, Louise
    Uppsala universitet.
    Health-related quality of life, anxiety and depression among adolescents and young adults with cancer: A prospective longitudinal study2007In: European Journal of Cancer, ISSN 0959-8049, E-ISSN 1879-0852, Vol. 43, no 13, p. 1952-1958Article in journal (Refereed)
    Abstract [en]

    The present study sets out to add to knowledge about the development over time of health-related quality of life (HRQL), anxiety and depression among survivors of adolescent cancer. The aim was to investigate if and how the HRQL, anxiety and depression of a group of adolescents with cancer differ from those of a reference group shortly after diagnosis, and subsequently at 6, 12 and 18 months after diagnosis. Adolescents diagnosed with cancer and a reference group randomised from the general population completed the Hospital Anxiety and Depression Scale (HADS) and the two subscales Mental Health and Vitality in the Short Form 36 (SF-36) in telephone interviews. The results indicate a steady increase in psychological well-being from the time of diagnosis, when the cancer patients’ ratings were significantly worse than those of the general population, and onwards. The differences gradually disappeared and then were reversed, resulting in the cancer group reporting significantly better HRQL and lower levels of anxiety and depression than the reference group when 1.5 years had passed since diagnosis. The adolescents faced with cancer show signs of adaptation to trauma, which can be understood in relation to the theoretical framework of posttraumatic growth as well as response shift. Future research should continue to follow this development over time, to investigate if the positive effects of the cancer experience will wear off, or if it has facilitated a permanent positive outcome.

  • 34.
    Karlsson, Anna-Malin
    et al.
    Uppsala universitet.
    Melander Marttala, Ulla
    Uppsala universitet.
    Mattsson, Elisabet
    Uppsala universitet.
    "Vi kan inte visa ett normalt hjärta": Kommunikativa praktiker i samband med hjärtfel hos foster2014In: Svenskans beskrivning 33 / [ed] Jan Lindström, Sofie Henricson, Anne Huhtala, Pirjo Kukkonen, Hanna Lehti-Eklund, Camilla Lindholm, Helsingfors: Finska, finskugriska och nordiska institutionen, Helsingfors universitet , 2014, p. 193-213Conference paper (Refereed)
  • 35.
    Karlsson, Elsa
    et al.
    Ersta Sköndal Bräcke University College, Department of Social Sciences.
    Klarare, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Låt våra hemlösa få bo på de tomma hotellen2021In: Aftonbladet, ISSN 1103-9000, no 2021-03-21Article in journal (Other (popular science, discussion, etc.))
    Abstract [sv]

    DEBATT. Covid-19 pandemin är en kris som påverkar samhällen i hela världen. Det är en utmanande tid för alla, men för socialt utsatta grupper, så som personer i hemlöshet, blir situationen ännu mer ohållbar.

  • 36.
    Karlsson, Hanna
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Klarare, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Vamstad, Johan
    Ersta Sköndal Bräcke University College, Centre for Civil Society Research.
    Låt berörda vara del i forskning2021In: Dagens Arena, no 2021-02-28Article in journal (Other (popular science, discussion, etc.))
    Abstract [sv]

    DEBATT: Att forskare och personer som berörs av forskningen arbetar gemensamt kan stärka möjligheten att lösa samhällsproblem och ge bättre kunskap. Det märker vi i vårt arbete med hemlösa kvinnor, skriver forskargruppen Jämlik vård för kvinnor i hemlöshet.

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  • 37.
    Klarare, Anna
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Carlsson, Tommy
    Uppsala universitet; Röda Korsets högskola.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Belonging to a community of care: Mothers' experiences of online peer support groups for parents having lost a child with congenital heart defects2022In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 46, no 7, p. 1741-1749Article in journal (Refereed)
    Abstract [en]

    The aim was to study mothers' experiences of online peer support groups after the death of a child. Participants (N = 8) were recruited through a newsletter for the Swedish association for families/children with heart defects, and two closed support groups on Facebook (900 and 100 members) and interviewed by telephone. Transcripts were analyzed with qualitative content analysis. The groups were available around the clock, regardless of support need, and mothers joined both to receive and provide support. Participation in online peer support groups may provide a sense of belonging to a caring community and serve as a valuable complement to healthcare.

  • 38.
    Klarare, Anna
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences. Department of Women’s and Children’s Health, Healthcare Sciences and e-Health, Uppsala University, Uppsala, Sweden.
    Ekström, Veronica
    Marie Cederschiöld University, Department of Social Sciences.
    Godskesen, Tove
    Marie Cederschiöld University, Department of Health Care Sciences. Faculty of Nursing and Health Sciences, Nord University, Bodø, Norway.
    Westman, Jeanette
    Marie Cederschiöld University, Department of Health Care Sciences.
    Mattsson, Elisabet
    Marie Cederschiöld University, Department of Health Care Sciences. Department of Women’s and Children’s Health, Healthcare Sciences and e-Health, Uppsala University, Uppsala, Sweden.
    Kneck, Åsa
    Marie Cederschiöld University, Department of Health Care Sciences.
    Treatment of trauma-related conditions for people in homelessness: A scoping review2024In: Journal of social distress and the homeless, ISSN 1053-0789, E-ISSN 1573-658XArticle, review/survey (Refereed)
    Abstract [en]

    People in homelessness face significant health inequities, with tri-morbidity, exposure to violence, substance use- and post-traumatic stress disorder. The aim of this scoping review was to describe treatments for trauma-related conditions for persons in homelessness. Systematic searches were performed in three databases: PubMed, PsycInfo and Scopus, guided by the PRISMA checklist. Nine studies fulfilled the criteria and were included in the review. Results show no randomized studies specifically focusing on treatment of trauma-related conditions for people in homelessness. Studies described interventions or programs that focused on consolidating and developing participants’ own strengths and skills to better navigate life with the challenges of homelessness, trauma, and PTSD. Treatment of trauma-related conditions may have positive effects for people in homelessness, as for others. Multimodal treatments, developing personal strengths and skills for people in homelessness, show potential to decrease trauma symptoms, however, more robust studies are needed for inferences and recommendations. 

  • 39.
    Klarare, Anna
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Söderlund, Mona
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Wikman, Anna
    Uppsala universitet.
    McGreevy, Jenny
    Region Sörmland; Centre for Clinical Research Sörmland.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Rosenblad, Andreas
    Uppsala universitet.
    Caring Behaviors Inventory-24: Translation, cross-cultural adaptation and psychometric testing for use in a Swedish context2021In: Human Resources for Health, E-ISSN 1478-4491, Vol. 19, no 1, article id 11Article in journal (Refereed)
    Abstract [en]

    Background: Patients’ health and wellbeing are promoted when nurses successfully conceptualize caring in clinical practice. Measuring caring behaviors can advance knowledge about caring and has potential to improve caring practices and the outcomes of care. The Caring Behaviors Inventory-24 (CBI-24) is an empirical instrument for measuring caring, developed to determine perceptions of caring among patients and nurses. Since the instrument was not available in Swedish, the aim of this study was therefore to translate into Swedish and cross-culturally adapt CBI-24 for a Swedish healthcare context, and to psychometrically analyze the Swedish version of CBI-24.

    Methods: The study used a traditional forward and back translation process in six stages: (1) two simultaneous translations by bilingual experts; (2) expert review committee synthesis; (3) blind back translation; (4) expert review committee deliberations; (5) pre-testing with cognitive interviews, and (6) psychometric evaluations. 

    Results: The translation process was systematically conducted and entailed discussions regarding semantic, idiomatic, experiential and conceptual equivalence. The cognitive interviews generated thoughts and reflections, which resulted in adjusting three items of the CBI-24 SWE. For psychometric analyses, 234 persons answered the questionnaire. Results indicated acceptable overall model fit in the χ2-value for the confirmatory factor analysis, while for the heuristic goodness-of-fit indices, the comparative fit index (CFI) and the standardized mean square residual (SMSR) indicated good model fits, and the root mean square error approximation (RMSEA) indicated an acceptable fit. 

    Conclusions: CBI-24 SWE has been shown to be a psychometrically acceptable instrument for use in Swedish research contexts. Further studies regarding the clinical usefulness of the instrument may be in order. In particular, CBI-24 SWE should be evaluated among nurses in rural areas.

  • 40.
    Klarare, Anna
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Wikman, Anna
    Uppsala universitet.
    Söderlund, Mona
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    McGreevy, Jenny
    Region Sörmland.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Rosenblad, Andreas
    Uppsala universitet.
    Translation, Cross-Cultural Adaptation, and Psychometric Analysis of the Attitudes Towards Homelessness Inventory for Use in Sweden2021In: Worldviews on Evidence-Based Nursing, ISSN 1545-102X, E-ISSN 1741-6787, Vol. 18, no 1, p. 42-49Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Homelessness is an increasing problem worldwide, and the origins of homelessness in high-income countries are multifaceted. Due to stigma and discrimination, persons in homelessness delay seeking health care, resulting in avoidable illness and death. The Attitudes Towards Homelessness Inventory (ATHI) was developed to cover multiple dimensions of attitudes toward persons in homelessness and to detect changes in multiple segments of populations. It has, however, not previously been translated to Swedish.

    AIMS: The aim of the present study was to translate, cross-culturally adapt, and psychometrically test the ATHI for use in a Swedish healthcare context.

    METHODS: The project used a traditional forward- and back-translation process in six stages: (1) two simultaneous translations by bilingual experts; (2) expert review committee synthesis; (3) blind back-translation; (4) expert review committee deliberations; (5) pre-testing with cognitive interviews including registered nurses (n = 5), nursing students (n = 5), and women in homelessness (n = 5); and (6) psychometric evaluations. The final ATHI questionnaire was answered by 228 registered nurses and nursing students in the year 2019.

    RESULTS: The translation process was systematically conducted and entailed discussions regarding semantic, idiomatic, experiential, and conceptual equivalence. Confirmatory factor analysis was used to examine if the collected data fitted the hypothesized four-factor structure of the ATHI. Overall, it was found that the model had an acceptable fit and that the Swedish version of ATHI may be used in a Swedish healthcare context.

    LINKING EVIDENCE TO ACTION: The ATHI has been shown to be a psychometrically acceptable research instrument for use in a Swedish healthcare context. The systematic and rigorous process applied in this study, including experts with diverse competencies in translation proceedings and testing, improved the reliability and validity of the final Swedish version of the ATHI. The instrument may be used to investigate attitudes toward women in homelessness among nursing students and RNs in Sweden.

  • 41.
    Kneck, Åsa
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences.
    Klarare, Anna
    Marie Cederschiöld University, Department of Health Care Sciences. Uppsala universitet.
    Mattsson, Elisabet
    Marie Cederschiöld University, Department of Health Care Sciences. Uppsala universitet.
    Salzmann‐Erikson, Martin
    Högskolan i Gävle.
    Reflections on health among women in homelessness: A qualitative study2022In: Journal of Psychiatric and Mental Health Nursing, ISSN 1351-0126, E-ISSN 1365-2850, Vol. 29, no 5, p. 709-720Article in journal (Refereed)
    Abstract [en]

    Introduction: Mental health issues are common among women in homelessness, alongside undertreated chronic physical conditions leading to serious and unnecessary complications. Even though homelessness and risks of impaired health have been researched, broader perspectives of health are absent.

    Aim: To describe reflections on health among women with experiences of homelessness.

    Method: We conducted thirteen interviews with women in homelessness using researcher-driven photo elicitation. Together with an advisory board of women with lived experience of homelessness, researchers were guided by the DEPICT model for collaborative data analysis and performed a thematic analysis.

    Findings: Women with experiences of homelessness emphasized three main resources for achieving health and well-being: feelings of having a home, being involved in authentic relationships and experiences of preserved dignity.

    Implication for practice: Healthcare needs to integrate the perceived resources for health and well-being when caring for women in homelessness. It is imperative since women will return to the healthcare setting only if they feel safe and secure, and only if dignity is preserved or restored. The results promote utilization of an integrative nursing approach; understanding that the health of women in homelessness is inseparable from their environment and social determinants for health, such as housing and social integration.

  • 42.
    Kneck, Åsa
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Salzmann-Erikson, Martin
    Högskolan i Gävle.
    Klarare, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    “Stripped of dignity” - Women in homelessness and their perspectives of healthcare services: A qualitative study2021In: International Journal of Nursing Studies, ISSN 0020-7489, E-ISSN 1873-491X, Vol. 120, article id 103974Article in journal (Refereed)
    Abstract [en]

    Background: A much more substantial European evidence base on the accessibility of healthcare services among women experiencing homelessness across healthcare systems in Europe is warranted.

    Objective: To give voice to women with experiences of homelessness, and to explore their perspectives of healthcare services in an EU country with universal healthcare.

    Design: The study is part of a research program striving to promote equal healthcare through co-production with women in homelessness. An advisory board of women with lived experience of homelessness was established and a qualitative, interpretive and exploratory design was employed.

    Participants: 26 women with experience of homelessness were interviewed. Their median age was 46 years (range 42) and 70% were roofless/houseless.

    Methods: Data were analyzed with content analysis. Co-production and joint analyses were conducted by researchers and three women with experience of homelessness, using the DEPICT model for collaborative analysis.

    Results: The analysis resulted in one overall theme: Visiting healthcare from the outskirts of society, comprising three sub-themes: Demand for a life in order - Exclusion in action; Unwell, unsafe and a woman - Multifaceted needs challenge healthcare; and Abuse versus humanity – power of healthcare encounters to raise or reduce. Women's experiences of care encounters were disparate, with prevalent control, mistrust and stigma, yet healthcare professionals that demonstrated respect for the woman's human dignity was described both as life-altering and lifesaving.

    Conclusions: Women in homelessness live on the outskirts of society and have multiple experiences of exclusion and loss of dignity within healthcare services. The multifaceted care needs challenge healthcare, leading to women feeling alienated, invisible, disconnected and worthless. We urge registered nurses to take actions for inclusion health, i.e. focusing health efforts of people experiencing extreme health inequities. We can lead the way by speaking up and confronting discriminating behaviors, protecting and restoring human dignity in caring relationships, and framing healthcare services for all citizens.

  • 43.
    Larsson, Gunnel
    et al.
    Uppsala universitet.
    Mattsson, Elisabet
    Uppsala universitet.
    von Essen, Louise
    Uppsala universitet.
    Aspects of quality of life, anxiety, and depression among persons diagnosed with cancer during adolescence: a long-term follow-up study2010In: European Journal of Cancer, ISSN 0959-8049, E-ISSN 1879-0852, Vol. 46, no 6, p. 1062-1068Article in journal (Refereed)
    Abstract [en]

    AIM: Quality of life, anxiety, and depression among persons diagnosed with cancer during adolescence up to 4 years after diagnosis, and in comparison with a reference group were investigated. METHODS: The cancer group (N=61) completed the SF-36 mental health and vitality and the HADS anxiety and depression subscales shortly after and at 6, 12, 18, 24, 36 and 48 months after diagnosis. A reference group (N=300) randomly drawn by Statistics Sweden from their civil register of the Swedish population completed the same instruments at one assessment. Data were collected by telephone interviews. RESULTS: Up to 6 months after diagnosis the cancer group reports lower levels of mental health and vitality and a higher level of depression than the reference group. At 18 months after diagnosis a reverse situation occurs and at 48 months after diagnosis the cancer group reports a higher level of vitality and lower levels of anxiety and depression than the reference group. CONCLUSION: The findings suggest that a positive psychological change may develop in the aftermath of cancer during adolescence. However, efforts should be made to enable clinicians and nursing staff to identify and to provide psychological support to individuals who experience low quality of life and high emotional distress. If these problems remain undetected and appropriate support is not provided the distress may become a barrier to physical recovery, resulting in a vicious cycle of physical and mental disability.

  • 44.
    Lehmann, Vicky
    et al.
    Nederländerna.
    Grönqvist, Helena
    Uppsala universitet.
    Engvall, Gunn
    Uppsala universitet.
    Ander, Malin
    Uppsala universitet.
    Tuinman, Marrit A
    Nederländerna.
    Hagedoorn, Mariët
    Nederländerna.
    Sanderman, Robbert
    nederländerna.
    Mattsson, Elisabet
    Uppsala universitet.
    von Essen, Louise
    Uppsala universitet.
    Negative and positive consequences of adolescent cancer 10 years after diagnosis: an interview-based longitudinal study in Sweden2014In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 23, no 11, p. 1229-1235Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The aim of this study was to provide insight into survivor-reported negative and positive consequences of cancer during adolescence 10 years after diagnosis and compare these with consequences reported 3 and 4 years after diagnosis. METHODS: Three, 4, and 10 years after diagnosis, survivors of adolescent cancer were interviewed about negative and positive consequences due to their cancer experience. Manifest content analysis was used to identify categories of reported consequences. Categories of consequences 10 years after diagnosis were compared with consequences reported 3 and 4 years after diagnosis. RESULTS: Seven categories of negative consequences were identified: bodily concerns, existential thoughts about loss and life (new at 10 years), psychological problems, difficulties interacting with others, health worries (new), fertility concerns (new), and frustrations about health care (new); and six categories of positive consequences: positive view of life, positive view of self, compassion for others (new), close relationships, gained knowledge about disease and health care, and financial gains. Consistent with previous time points, bodily concerns were reported most often. The majority of survivors (n = 22) reported both negative and positive consequences of their former disease. Few reported only negative (n = 2) or only positive consequences (n = 4). CONCLUSIONS: Ten years after diagnosis, most survivors reported both negative and positive consequences. New themes, relevant to young adulthood and long-term survival, were identified. Health care professionals treating young adult survivors may anticipate and address problems regarding physical health, fertility, and health care but may also reinforce positive affect by addressing survivors’ positive views of life, sense of self, and close relationships.

  • 45.
    Ljungman, Lisa
    et al.
    Uppsala universitet.
    Köhler, Matilda
    Uppsala universitet.
    Hovén, Emma
    Uppsala universitet; Karolinska institutet.
    Stålberg, Karin
    Uppsala universitet.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Wikman, Anna
    Uppsala universitet.
    "There should be some kind of checklist for the soul": A qualitative interview study of support needs after end of treatment for gynecologic cancer in young women2021In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 52, article id 101927Article in journal (Refereed)
    Abstract [en]

    PURPOSE: Young women diagnosed with a gynecologic cancer face the risk of significant physical and mental health problems after end of treatment. Still, there is a lack of knowledge regarding specific support needs in this population, and supportive care services provided to young women with a gynecologic cancer have been reported to be insufficient. The aim of this study was therefore to identify support needs experienced by women diagnosed with a gynecologic cancer before the age of 40.

    METHOD: Qualitative semi-structured interviews were conducted with participants (n = 10). Interviews were analyzed using content analysis with an inductive approach.

    RESULTS: Eight categories and two themes were identified. The themes described if these needs were related to how women wanted the support to be provided, or to what the support should contain, i.e., 'Form' and 'Content', respectively. The categories related to 'Form' included: Outreach support; Long-term specialized support; Support for the whole family; and Peer-support, whereas categories related to 'Content' included needs for: Support for psychological reactions; Support related to reproduction, sexuality, and family life; Information regarding late effects; and Support tailored to younger women.

    CONCLUSION: Women diagnosed with a gynecologic cancer during young adulthood report several specific support needs. The results provide important guidance to clinicians and health care providers by outlining these needs both in terms of form and content.

  • 46.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Hur kan hemlösa kvinnor få samma vård som andra i samhället?2020Other (Other academic)
    Abstract [sv]

    I denna podd träffar du Elisabet Mattsson som är professor i vårdvetenskap. Det är det ämne som är huvudområdet för utbildning inom sjuksköterskeprogrammet. Elisabet forskar just nu om hur kvinnor som lever i hemlöshet kan få vård på samma vilkor som andra svenska medborgare.

    Kvinnor som lever i hemlöshet dör oftare av möjliga behandlingsbara sjukdomar än kvinnor i allmänhet, även i höginkomstländer som Sverige. Vård på lika villkor är ett projekt där man fokuserar på hälsoinsatser för människor med dålig hälsa på grund av social utsatthet, fattigdom och med multisjukdomar.

  • 47.
    Mattsson, Elisabet
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Agius, Josefine
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Öka kunskapen i vården kring skyddad identitet2021In: Dagens medicin, ISSN 1104-7488, no 2021-11-10Article in journal (Other (popular science, discussion, etc.))
    Abstract [sv]

    Våldsutsatta kvinnor med skyddad identitet möter svårigheter då de söker vård, skriver Elisabet Mattsson och Josefine Agius vid Ersta Sköndal Bräcke högskola.

  • 48.
    Mattsson, Elisabet
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Einhorn, Kim
    Uppsala universitet.
    Ljungman, Lisa
    Karolinska institutet.
    Sundström-Poromaa, Inger
    Uppsala universitet.
    Stålberg, Karin
    Uppsala universitet.
    Wikman, Anna
    Uppsala universitet.
    Women treated for gynaecological cancer during young adulthood: A mixed-methods study of perceived psychological distress and experiences of support from health care following end-of-treatment.2018In: Gynecologic Oncology, ISSN 0090-8258, E-ISSN 1095-6859, Vol. 149, no 3, p. 464-469, article id S0090-8258(18)30235-XArticle in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To investigate the prevalence and predictors of cancer-related distress in younger women treated for gynaecological cancer, and to explore women's needs and experiences of psychosocial support following end-of-treatment.

    METHODS: Data were collected from 337 gynaecological cancer survivors, 19-39years at diagnosis, using a study-specific questionnaire and the Swedish Quality Register of Gynaecologic Cancer. Predictors of distress were investigated with multivariable logistic regression analysis. Open-ended questions were analysed with content analysis.

    RESULTS: The prevalence of cancer-related distress was 85% (n=286) including fear of cancer-recurrence (n=175, 61%), anxiety (n=152, 53%), depression (n=145, 51%), fear of death (n=91, 32%), concerns regarding sexuality (n=87, 34%) and fertility (n=78, 27%), and changed body image (n=78, 27%). Multi-modal treatment (OR 2.25, 95% CI 1.13-4.49) and a history of psychological distress (OR 3.44, 95% CI 1.41-8.39) predicted cancer-related distress. The majority of women experiencing distress also reported a need for support after end-of-treatment (n=205, 71%). One-third of those receiving support reported the received support as inadequate (n=55, 34%). Eight categories described reasons for not seeking support, e.g., lacked strength to seek professional support and too busy managing every-day life and, wanted help but did not know who to turn to. Four categories described reasons for not receiving sought support e.g., found it difficult to openly express feelings, psychosocial care was under-dimensioned, insufficient and unprofessional.

    CONCLUSION: Results identify the importance of support and longer-term follow-up for young survivors of gynaecological cancer. The support needs to be organised to meet this group's specific needs.

  • 49.
    Mattsson, Elisabet
    et al.
    Uppsala universitet, Lunds universitet.
    El-Khouri, Bassam
    Ljungman, Gustaf
    Uppsala universitet.
    von Essen, Louise
    Uppsala universitet.
    Empirically derived psychosocial states among adolescents diagnosed with cancer during the acute and extended phase of survival2009In: Annals of Oncology, ISSN 0923-7534, E-ISSN 1569-8041, Vol. 20, no 10, p. 1722-1727Article in journal (Refereed)
    Abstract [en]

    Patients and methods: Participants completed the Hospital Anxiety and   Depression Scale and two subscales, Vitality and Mental Health, in the   SF-36 4-8 weeks (T1) (n = 61), 6 (T2) (n = 57), 12 (T3) (n = 50), and   18 (T4) months (n = 48) after diagnosis. I-State as Object of Analysis   was used to identify a finite set of states based on three dimensions.   Cluster analysis was carried out using Ward’s method.   Results: Five states were obtained: psychosocial dysfunction (state A)   and poor (B), incomplete (C), good (D), and excellent (E) psychosocial   function. At T1, more adolescents than expected by chance were in   states A (P &lt; 0.05) and C (P &lt; 0.01) and fewer in states D (P &lt; 0.05)   and E (P &lt; 0.001). At T4, more adolescents than expected by chance were   in state E (P &lt; 0.001) and fewer in state C (P &lt; 0.05). Female gender   and being in late adolescence when diagnosed is related to worse   psychosocial function.   Conclusion: The findings provide support for subgroups of adolescents   whose level of vitality, mental health, and anxiety differ during the   acute and extended phase of survival of cancer. Clinical interventions   tailored to the level of impairment as determined by the clusters may   result in better psychosocial outcomes.

  • 50.
    Mattsson, Elisabet
    et al.
    Uppsala universitet.
    Funkquist, Eva-Lotta
    Uppsala universitet.
    Wickström, Maria
    Uppsala universitet.
    Nyqvist, Kerstin Hedberg
    Uppsala universitet.
    Volgsten, Helena
    Uppsala universitet.
    Healthy late preterm infants and supplementary artificial milk feeds: Effects on breast feeding and associated clinical parameters2015In: Midwifery, ISSN 0266-6138, E-ISSN 1532-3099, Vol. 31, no 4, p. 426-431Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: to compare the influence of supplementary artificial milk feeds on breast feeding and certain clinical parameters among healthy late preterm infants given regular supplementary artificial milk feeds versus being exclusively breast fed from birth. DESIGN: a comparative study using quantitative methods. Data were collected via a parental diary and medical records. METHODS: parents of 77 late preterm infants (34 5/7-36 6/7 weeks), whose mothers intended to breast feed, completed a diary during the infants׳ hospital stay. FINDINGS: infants who received regular supplementary artificial milk feeds experienced a longer delay before initiation of breast feeding, were breast fed less frequently and had longer hospital stays than infants exclusively breast fed from birth. Exclusively breast-fed infants had a greater weight loss than infants with regular artificial milk supplementation. A majority of the mothers (65%) with an infant prescribed artificial milk never expressed their milk and among the mothers who used a breast-pump, milk expression commenced late (10-84 hours after birth). At discharge, all infants were breast fed to some extent, 43% were exclusively breast fed. KEY CONCLUSIONS: clinical practice and routines influence the initiation of breast feeding among late preterm infants and may act as barriers to the mothers׳ establishment of exclusive breast feeding.

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