'It was Supposed to be a Secret': a study of disclosure and stigma as experienced by adults with differences of sex development

Authors: Mediå, Line Merete, Fauske, Lena, Sigurdardottir, Solrun, Feragen, Kristin J. Billaud, Heggeli, Charlotte, Wæhre, Anne

Source: Health psychology and behavioral medicine. 10(1):579-595

Availability: http://explore.bl.uk/primo_library/libweb/action/display.do?tabs=detailsTab&gathStatTab=true&ct=display&fn=search&doc=ETOCvdc_100184269303.0x000001&indx=1&recIds=ETOCvdc_100184269303.0x000001

Clinical and genetic aspects of Bardet–Biedl syndrome in adults in Norway.

Authors: Rustad, Cecilie Fremstad, Bragadottir, Ragnheidur, Tveten, Kristian, Nordgarden, Hilde, Miller, Jeanette Ullmann, Åsten, Pamela Marika, Vasconcelos, Gisela, Kulseth, Mari Ann, Holla, Øystein Lunde, Olsen, Hanne Gro, von der Lippe, Charlotte, Sigurdardottir, Solrun

Source: Orphanet Journal of Rare Diseases; 3/14/2025, Vol. 20 Issue 1, p1-12, 12p

Subject Terms: GENETIC variation, OBESITY, RETINAL degeneration, CILIOPATHY, INTERDISCIPLINARY research, KIDNEY diseases, NUCLEOTIDE sequencing

Geographic Terms: NORWAY

Understanding sexual health concerns among adolescents and young adults with differences of sex development: a qualitative study.

Authors: Merete Mediå, Line^1,2 lmedia@ous-hf.no, Sigurdardottir, Solrun¹, Fauske, Lena^2,3, Waehre, Anne^4,5,6

Source: International Journal of Qualitative Studies on Health & Well-Being. Dec2023, Vol. 18 Issue 1, p1-12. 12p.

Subject Terms: *PERSONAL beauty, *RESEARCH, *ADRENOGENITAL syndrome, *INTIMACY (Psychology), *SEX differentiation disorders, *RESEARCH methodology, *HUMAN sexuality, *MAYER-Rokitansky-Kuster-Hauser syndrome, *INTERVIEWING, *SOCIAL stigma, *FEAR, *LANGUAGE & languages, *ADOLESCENT health, *EXPERIENCE, *QUALITATIVE research, *PHENOMENOLOGY, *HEALTH literacy, *COMMUNICATION, *FERTILITY, *HEALTH, *INFORMATION resources, *RESEARCH funding, *THEMATIC analysis, *MALE reproductive organ diseases, *GONADAL dysgenesis, *SEXUAL excitement, *SEXUAL health, *BODY image, *HYPOSPADIAS, *ANDROGEN-insensitivity syndrome, *ADOLESCENCE

Geographic Terms: NORWAY

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Health‐related quality of life in Norwegian adults with Fabry disease: Disease severity, pain, fatigue and psychological distress

Authors: Pihlstrøm, Hege Kampen, Weedon‐Fekjær, Mina Susanne, Bjerkely, Birgitte Leisner, Lippe, Charlotte, Ørstavik, Kristin, Mathisen, Per, Heimdal, Ketil, Jenssen, Trond Geir, Dahle, Dag Olav, Solberg, Olga Karin, Sigurdardottir, Solrun

Source: JIMD reports. 62(1):56-69

Availability: http://explore.bl.uk/primo_library/libweb/action/display.do?tabs=detailsTab&gathStatTab=true&ct=display&fn=search&doc=ETOCvdc_100134619261.0x000001&indx=1&recIds=ETOCvdc_100134619261.0x000001

Β‐Amyloid may accumulate in the human brain after focal bacterial infection: An 18F‐flutemetamol positron emission tomography study

Authors: Rogne, Ane Gretesdatter, Müller, Ebba Gløersen, Udnæs, Eirin, Sigurdardottir, Solrun, Raudeberg, Rune, Connelly, James Patrick, Revheim, Mona‐Elisabeth, Hassel, Bjørnar, Dahlberg, Daniel

Source: European journal of neurology. 28(3):877-883

Availability: http://explore.bl.uk/primo_library/libweb/action/display.do?tabs=detailsTab&gathStatTab=true&ct=display&fn=search&doc=ETOCvdc_100124899878.0x000001&indx=1&recIds=ETOCvdc_100124899878.0x000001

Differences of sex development and surgical decisions: focus group interviews with health care professionals in Norway.

Authors: Mediå, Line Merete, Fauske, Lena, Sigurdardottir, Solrun, Billaud Feragen, Kristin J., Waehre, Anne

Source: Health Psychology & Behavioral Medicine; Dec2024, Vol. 12 Issue 1, p1-19, 19p

Subject Terms: BEST interests of the child (Law), MEDICAL personnel, SEXUAL dimorphism, DECISION making, THEMATIC analysis

Trajectories of self-reported competency up to 10 years following moderate-to-severe traumatic brain injury

Authors: van Walsem, Marleen R., Howe, Emilie I., Perrin, Paul B., Sigurdardottir, Solrun, Røe, Cecilie, Sveen, Unni, Lu, Juan, Forslund, Marit V., Andelic, Nada

Source: Brain injury. 34(3):335-342

Availability: http://explore.bl.uk/primo_library/libweb/action/display.do?tabs=detailsTab&gathStatTab=true&ct=display&fn=search&doc=ETOCvdc_100100096926.0x000001&indx=1&recIds=ETOCvdc_100100096926.0x000001

Family needs at one and two years after severe traumatic brain injury: a prospective study of changes and predictors

Authors: Anke, Audny, Røe, Cecilie, Sigurdardottir, Solrun, Norup, Anne, Soberg, Helene L., Arango-Lasprilla, Juan Carlos, Manskow, Unn Sollid

Source: Brain injury. 34(1):89-97

Availability: http://explore.bl.uk/primo_library/libweb/action/display.do?tabs=detailsTab&gathStatTab=true&ct=display&fn=search&doc=ETOCvdc_100096864763.0x000001&indx=1&recIds=ETOCvdc_100096864763.0x000001

Fatigue and depression at 8 weeks and 1 year after bacterial brain abscess and their relationship with cognitive status.

Authors: Rogne, Ane Gretesdatter^1,2 (AUTHOR) ane.gretesdatter.rogne@sunnaas.no, Sigurdardottir, Solrun¹ (AUTHOR), Raudeberg, Rune³ (AUTHOR), Hassel, Bjørnar^1,4 (AUTHOR), Dahlberg, Daniel¹ (AUTHOR)

Source: Neuropsychological Rehabilitation. Aug2024, p1-24. 24p. 2 Illustrations.

Subject Terms: *EXECUTIVE function, *BRAIN abscess, *FATIGUE (Physiology), *RELATIONSHIP status, *SHORT-term memory

Cognitive and everyday functioning after bacterial brain abscess: a prospective study of functional recovery from 8 weeks to 1 year post-treatment.

Authors: Rogne, Ane Gretesdatter^1,2 ane.gretesdatter.rogne@sunnaas.no, Sigurdardottir, Solrun³, Raudeberg, Rune⁴, Hassel, Bjørnar^1,5, Dahlberg, Daniel⁶

Source: Brain Injury. 2024, Vol. 38 Issue 10, p787-795. 9p.

Subject Terms: *BACTERIAL disease treatment, *MOTOR ability, *MILD cognitive impairment, *EXECUTIVE function, *FUNCTIONAL assessment, *TREATMENT effectiveness, *DESCRIPTIVE statistics, *LONGITUDINAL method, *ATTENTION, *CONVALESCENCE, *NEUROPSYCHOLOGICAL tests, *NEUROPSYCHOLOGY, *BRAIN injuries, *BRAIN abscess, *COGNITION, *VERBAL behavior

Relationship between physical and psychological functioning and health‐related quality of life in congenital Aniridia.

Authors: Landsend, Erlend Christoffer Sommer, von der Lippe, Charlotte, Mediå, Line, Miller, Jeanette Ullmann, Berge, Knut Erik, Sigurdardottir, Solrun

Source: Acta Ophthalmologica (1755375X); Aug2024, Vol. 102 Issue 5, p590-599, 10p

Subject Terms: QUALITY of life, PHYSICAL mobility, EYE pain, EYE diseases, MAYER-Rokitansky-Kuster-Hauser syndrome, VISUAL analog scale, COMPULSIVE eating

Improvement and Prediction of Memory and Executive Functions in Patients Admitted to a Neurosurgery Service With Complicated and Uncomplicated Mild Traumatic Brain Injury

Authors: Holthe, Oyvor Oistensen, Hellstrom, Torgeir, Andelic, Nada, Server, Andres, Sigurdardottir, Solrun

Source: Journal of head trauma rehabilitation. 34(5):E45-E56

Availability: http://explore.bl.uk/primo_library/libweb/action/display.do?tabs=detailsTab&gathStatTab=true&ct=display&fn=search&doc=ETOCvdc_100177490261.0x000001&indx=1&recIds=ETOCvdc_100177490261.0x000001

Family members' experience with in-hospital health care after severe traumatic brain injury: a national multicentre study

Authors: Manskow, Unn, Arntzen, Cathrine, Damsgård, Elin, Braine, Mary, Sigurdardottir, Solrun, Andelic, Nada, Røe, Cecilie, Anke, Audny

Source: BMC health services research. 18(1):1-10

Availability: http://explore.bl.uk/primo_library/libweb/action/display.do?tabs=detailsTab&gathStatTab=true&ct=display&fn=search&doc=ETOCvdc_100185348017.0x000001&indx=1&recIds=ETOCvdc_100185348017.0x000001

The impact of demographic and clinical characteristics on the trajectories of health-related quality of life among patients with Fabry disease.

Authors: Sigurdardottir, Solrun¹ (AUTHOR) sosigu@ous-hf.no, Bjerkely, Birgitte¹ (AUTHOR), Jenssen, Trond G.^2,3 (AUTHOR), Mathisen, Per⁴ (AUTHOR), von der Lippe, Charlotte¹ (AUTHOR), Ørstavik, Kristin⁵ (AUTHOR), Heimdal, Ketil⁶ (AUTHOR), Dahle, Dag Olav² (AUTHOR), Weedon-Fekjær, Mina Susanne¹ (AUTHOR), Solberg, Olga¹ (AUTHOR), Pihlstrøm, Hege K.² (AUTHOR)

Source: Orphanet Journal of Rare Diseases. 10/12/2021, Vol. 16 Issue 1, p1-11. 11p.

Subject Terms: *QUALITY of life, *ANGIOKERATOMA corporis diffusum, *MEDICAL personnel, *SYMPTOMS, *SOCIAL norms, *DEMOGRAPHIC characteristics

The trajectories of overall disability in the first 5 years after moderate and severe traumatic brain injury

Authors: Forslund, Marit V., Roe, Cecilie, Perrin, Paul B., Sigurdardottir, Solrun, Lu, Juan, Berntsen, Svein, Andelic, Nada

Source: Brain injury. 31(3):329-335

Availability: http://explore.bl.uk/primo_library/libweb/action/display.do?tabs=detailsTab&gathStatTab=true&ct=display&fn=search&doc=ETOCvdc_100099747507.0x000001&indx=1&recIds=ETOCvdc_100099747507.0x000001

Questionnaire Use Among Nordic Neuropsychologists: Shift From Assessing Personality to Checking Ecological Validity of Neuropsychological Assessments?

Authors: Egeland, Jens, Løvstad, Marianne, Norup, Anne, Nybo, Taina, Persson, Bengt A., Rivera, Diego, Schanke, Anne-Kristine, Sigurdardottir, Solrun, Arango-Lasprilla, Juan Carlos

Source: Professional psychology, research and practice. 48(4):227-235

Availability: http://explore.bl.uk/primo_library/libweb/action/display.do?tabs=detailsTab&gathStatTab=true&ct=display&fn=search&doc=ETOCRN612415089&indx=1&recIds=ETOCRN612415089

Self-Perceived Health Care Needs and Delivery of Health Care Services 5 Years After Moderate-to-Severe Traumatic Brain Injury

Authors: Andelic, Nada, Soberg, Helene L., Berntsen, Svein, Sigurdardottir, Solrun, Roe, Cecilie

Source: In PM&R November 2014 6(11):1013-1021

Following international trends while subject to past traditions: neuropsychological test use in the Nordic countries

Authors: Egeland, Jens, Løvstad, Marianne, Norup, Anne, Nybo, Taina, Persson, Bengt A., Rivera, Diego Fernando, Schanke, Anne-Kristine, Sigurdardottir, Solrun, Arango-Lasprilla, Juan Carlos

Source: Clinical neuropsychologist. 30:1479-1500

Availability: http://explore.bl.uk/primo_library/libweb/action/display.do?tabs=detailsTab&gathStatTab=true&ct=display&fn=search&doc=ETOCvdc_100037818631.0x000001&indx=1&recIds=ETOCvdc_100037818631.0x000001

Self-reported symptoms of everyday executive dysfunction, daytime sleepiness, and fatigue and health status among adults with congenital aniridia: a descriptive study.

Authors: Sigurdardottir, Solrun, von der Lippe, Charlotte, Media, Line, Ullmann Miller, Jeanette, Landsend, Erlend Christoffer Sommer

Source: Health Psychology & Behavioral Medicine; Dec2023, Vol. 11 Issue 1, p1-13, 13p

Subject Terms: FATIGUE (Physiology), EXECUTIVE function, DROWSINESS, EYE pain, GENETIC disorders, LOW vision