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  • 1.
    Ander, Malin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Grönqvist, Helena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Cernvall, Martin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    Engvall, Gunn
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    Hedström, Mariann
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    Lyhagen, Johan
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Statistics.
    Mattsson, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    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

  • 2.
    Ander, Malin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    Mattsson, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Toft, Teolinda
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Norberg, Annika Lindahl
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    U-CARE: YoungCan-Development of an Internet-Based Self-Help Program of Psychosocial Support and Psychological Treatment2013Conference paper (Refereed)
  • 3.
    Carlsson, Tommy
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare. Sophiahemmet Univ, Box 5605, SE-11486 Stockholm, Sweden.
    Balbas, Banaz
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Mattsson, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare. Ersta Skondal Bracke Univ Coll, Dept Hlth Care Sci, Stockholm, Sweden.
    Written narratives from immigrants following a prenatal diagnosis: qualitative exploratory study2019In: BMC Pregnancy and Childbirth, ISSN 1471-2393, E-ISSN 1471-2393, Vol. 19, 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.

  • 4.
    Carlsson, Tommy
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Bergman, Gunnar
    Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden.
    Karlsson, Anna-Malin
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Languages, Department of Scandinavian Languages.
    Wadensten, Barbro
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Mattsson, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare. Department of Health Care Sciences, Ersta Sköndal University College, Stockholm, Sweden.
    Experiences of termination of pregnancy for a fetal anomaly: A qualitative study of virtual community messages2016In: 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. 

  • 5.
    Carlsson, Tommy
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Bergman, Gunnar
    Wadensten, Barbro
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Mattsson, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    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.

  • 6.
    Carlsson, Tommy
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Landqvist, Mats
    Södertörn Univ, Sch Culture & Educ, Stockholm, Sweden.
    Mattsson, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences. Ersta Skondal Univ Coll, Dept Hlth Care Sci, Stockholm, Sweden.
    Communication of support and critique in Swedish virtual community threads about prenatal diagnoses of fetal anomalies2016In: BMC Pregnancy and Childbirth, ISSN 1471-2393, E-ISSN 1471-2393, Vol. 16, article id 199Article 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.

  • 7.
    Carlsson, Tommy
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Marttala, Ulla Melander
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Languages, Department of Scandinavian Languages.
    Mattsson, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare. Department of Health Care Sciences, Ersta Sköndal University College, Stockholm, Sweden.
    Ringnér, Anders
    Department of Nursing, Umeå University, Umeå, Sweden.
    Experiences and preferences of care among Swedish immigrants following a prenatal diagnosis of congenital heart defect in the fetus: a qualitative interview study2016In: BMC Pregnancy and Childbirth, ISSN 1471-2393, E-ISSN 1471-2393, Vol. 16, no 130Article 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.

  • 8.
    Carlsson, Tommy
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare.
    Mattsson, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare. Ersta Skondal Univ Coll, Dept Hlth Care Sci, SE-10061 Stockholm, Sweden.
    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 partner2018In: BMC Pregnancy and Childbirth, ISSN 1471-2393, E-ISSN 1471-2393, Vol. 18, 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.

  • 9.
    Carlsson, Tommy
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare.
    Melander, Marttala Ulla
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Languages, Department of Scandinavian Languages.
    Wadensten, Barbro
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Bergman, Gunnar
    Institutionen för Kvinnors och Barns Hälsa, Karolinska Institutet.
    Axelsson, Ove
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Obstetric research. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Centrum för klinisk forskning i Sörmland (CKFD).
    Mattsson, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare. Institutionen för Vårdvetenskap, Ersta Sköndal Bräcke Högskola.
    Quality of Patient Information Websites About Congenital Heart Defects: Mixed-Methods Study of Perspectives Among Individuals With Experience of a Prenatal Diagnosis2017In: Interactive Journal of Medical Research, E-ISSN 1929-073X, Vol. 6, no 2, article id e15Article 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.

  • 10.
    Carlsson, Tommy
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Melander Marttala, Ulla
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Languages, Department of Scandinavian Languages.
    Wadensten, Barbro
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Bergman, Gunnar
    Department of Women’s and Children’s Health, Karolinska Institutet.
    Mattsson, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare.
    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, Vol. 2, no 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.

  • 11.
    Carlsson, Tommy
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare.
    Starke, Veronica
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Mattsson, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare. Ersta Skondal Bracke Univ Coll, Dept Hlth Care Sci, Stockholm, Sweden..
    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. 

  • 12.
    Engvall, Gunn
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Cernvall, Martin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Larsson, Gunnel
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Mattsson, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    Cancer during adolescence: negative and positive consequences reported during the acute and extended phase of survival.2011Conference paper (Refereed)
  • 13.
    Engvall, Gunn
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Cernvall, Martin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Larsson, Gunnel
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Mattsson, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Cancer during adolescence: negative and positive consequences reported three and four years after diagnosis2011In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 6, no 12, p. e29001-Article 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.

  • 14.
    Engvall, Gunn
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Mattsson, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Hedström, Mariann
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    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.

  • 15.
    Engvall, Gunn
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Skolin, Inger
    Department of Laboratory Medicine, Section of Clinical Physiology, Karolinska Institutet, Stockholm.
    Mattsson, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Hedström, Mariann
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    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.

  • 16.
    Engvall, Gunn
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Mattsson, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Longitudinally derived psychosocial states among individuals diagnosed with cancer during adolescence up to four years after diagnosis2011Article in journal (Refereed)
  • 17.
    Gerhardsson, Emma
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Hildingsson, Ingegerd
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Obstetrics and Reproductive Health Research.
    Mattsson, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare.
    Funkquist, Eva-Lotta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Perinatal, Neonatal and Pediatric Cardiology Research.
    Prospective questionnaire study showed that higher self-efficacy predicted longer exclusive breastfeeding by the mothers of late preterm infants2018In: 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.

  • 18.
    Gerhardsson, Emma
    et al.
    Pediatric Specialist Outpatient Department, University Hospital, Uppsala, Sweden.
    Nyqvist, Kerstin Hedberg
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    Mattsson, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Volgsten, Helena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Obstetrics and Gynaecology.
    Hildingsson, Ingegerd
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Obstetrics and Gynaecology.
    Funkquist, Eva-Lotta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics.
    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.

  • 19.
    Hedberg Nyqvist, Kerstin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Rosenblad, Andreas
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Centre for Clinical Research, County of Västmanland. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Occupational and Environmental Medicine.
    Volgsten, Helena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Funkquist, Eva-Lotta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Mattsson, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare.
    Early skin-to-skin contact between healthy late preterm infants and their parents: an observational cohort study2017In: PeerJ, ISSN 2167-8359, E-ISSN 2167-8359, Vol. 5, article id e3949Article 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 < 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.

  • 20.
    Jörngården, Anna
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Mattsson, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    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.

  • 21.
    Karlsson, Anna-Malin
    et al.
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Languages, Department of Scandinavian Languages.
    Melander Marttala, Ulla
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Languages, Department of Scandinavian Languages.
    Mattsson, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    "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)
  • 22.
    Larsson, Gunnel
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Mattsson, Elisabet
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    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.