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Melander Marttala, Ulla
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Publications (10 of 43) Show all publications
Carlsson, T., Melander, M. U., Wadensten, B., Bergman, G., Axelsson, O. & Mattsson, E. (2017). Quality of Patient Information Websites About Congenital Heart Defects: Mixed-Methods Study of Perspectives Among Individuals With Experience of a Prenatal Diagnosis. Interactive Journal of Medical Research, 6(2), Article ID e15.
Open this publication in new window or tab >>Quality of Patient Information Websites About Congenital Heart Defects: Mixed-Methods Study of Perspectives Among Individuals With Experience of a Prenatal Diagnosis
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2017 (English)In: Interactive Journal of Medical Research, E-ISSN 1929-073X, Vol. 6, no 2, article id e15Article in journal (Refereed) Published
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.

Keywords
congenital heart defects, consumer health information, information literacy, Internet, popular works, pregnancy, prenatal diagnosis
National Category
Nursing
Research subject
Caring Sciences
Identifiers
urn:nbn:se:uu:diva-328480 (URN)10.2196/ijmr.7844 (DOI)000415945500008 ()28899846 (PubMedID)
Available from: 2017-08-23 Created: 2017-08-23 Last updated: 2017-12-19Bibliographically approved
Bendegard, S., Melander Marttala, U. & Westman, M. (Eds.). (2017). Språk och norm. Language and norms: Rapport från ASLA:s symposium, Uppsala universitet 21-22 april 2016. Papers from the ASLA Symposium at Uppsala University 21-22 April, 2016. Paper presented at Språk och norm. ASLA:s symposium, Uppsala universitet 21-22 april 2016. Uppsala: ASLA: Svenska föreningen för tillämpad språkvetenskap
Open this publication in new window or tab >>Språk och norm. Language and norms: Rapport från ASLA:s symposium, Uppsala universitet 21-22 april 2016. Papers from the ASLA Symposium at Uppsala University 21-22 April, 2016
2017 (Swedish)Conference proceedings (editor) (Refereed)
Place, publisher, year, edition, pages
Uppsala: ASLA: Svenska föreningen för tillämpad språkvetenskap, 2017. p. 205
Series
ASLA:s skriftserie, ISSN 1100-5629 ; 26
National Category
Languages and Literature
Identifiers
urn:nbn:se:uu:diva-333544 (URN)978-91-87884-26-9 (ISBN)
Conference
Språk och norm. ASLA:s symposium, Uppsala universitet 21-22 april 2016
Available from: 2017-11-14 Created: 2017-11-14 Last updated: 2019-06-14Bibliographically approved
Gustafson Capková, S., Anglemark, L., Kytö, M., Melander Marttala, U. & Thelander, M. (2016). English and Swedish Drama dialogue/Engelsk och Svensk DramaDialog 1725-1950. ESDD.
Open this publication in new window or tab >>English and Swedish Drama dialogue/Engelsk och Svensk DramaDialog 1725-1950. ESDD
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2016 (Swedish)Report (Other academic)
Publisher
p. 56
National Category
Languages and Literature
Identifiers
urn:nbn:se:uu:diva-240981 (URN)
Available from: 2015-01-08 Created: 2015-01-08 Last updated: 2016-03-21Bibliographically approved
Carlsson, T., Marttala, U. M., Mattsson, E. & Ringnér, A. (2016). Experiences and preferences of care among Swedish immigrants following a prenatal diagnosis of congenital heart defect in the fetus: a qualitative interview study. BMC Pregnancy and Childbirth, 16(130)
Open this publication in new window or tab >>Experiences and preferences of care among Swedish immigrants following a prenatal diagnosis of congenital heart defect in the fetus: a qualitative interview study
2016 (English)In: BMC Pregnancy and Childbirth, ISSN 1471-2393, E-ISSN 1471-2393, Vol. 16, no 130Article in journal (Refereed) Published
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.

Keywords
Immigrants, Interview, Life change events, Pregnancy, Prenatal diagnosis
National Category
Nursing Specific Languages
Research subject
Caring Sciences
Identifiers
urn:nbn:se:uu:diva-295391 (URN)10.1186/s12884-016-0912-1 (DOI)000376845800002 ()27256335 (PubMedID)
Available from: 2016-06-07 Created: 2016-06-06 Last updated: 2018-01-10Bibliographically approved
Carlsson, T., Melander Marttala, U., Wadensten, B., Bergman, G. & Mattsson, E. (2016). Involvement of persons with lived experience of a prenatal diagnosis of congenital heart defect: An explorative study to gain insights into perspectives on future research. Research Involvement and Engagement, 2(35)
Open this publication in new window or tab >>Involvement of persons with lived experience of a prenatal diagnosis of congenital heart defect: An explorative study to gain insights into perspectives on future research
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2016 (English)In: Research Involvement and Engagement, Vol. 2, no 35Article in journal (Refereed) Published
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.

Abstract [en]

Plain English summary

Ultrasound examinations during pregnancy have led to an increased number of detected heart defects in fetuses. Pregnant women and their partners are often unprepared for these news, and experience several difficulties following the diagnosis. We asked persons with personal experience to participate in group discussions about relevant future research topics. The discussions revealed that future research should investigate supplemental written information or follow-up appointments with health professionals. Researchers were also encouraged to focus their efforts on structures that offer emotional support. The emotional support could be from those that share similar experiences, or additional support from a health professional. The results of this study illustrate the need for researchers to continue their work to test ways to support persons faced with these diagnoses.

Keywords
Congenital heart defects, Needs assessment, Patient participation, Prenatal diagnosis
National Category
Clinical Medicine Nursing Obstetrics, Gynecology and Reproductive Medicine
Research subject
Caring Sciences
Identifiers
urn:nbn:se:uu:diva-309952 (URN)10.1186/s40900-016-0048-5 (DOI)
Available from: 2016-12-08 Created: 2016-12-08 Last updated: 2017-01-04Bibliographically approved
Carlsson, T., Bergman, G., Melander Marttala, U., Wadensten, B. & Mattsson, E. (2015). Information following a Diagnosis of Congenital Heart Defect: Experiences among Parents to Prenatally Diagnosed Children. PLoS ONE, 10(2), Article ID e0117995.
Open this publication in new window or tab >>Information following a Diagnosis of Congenital Heart Defect: Experiences among Parents to Prenatally Diagnosed Children
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2015 (English)In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 10, no 2, article id e0117995Article in journal (Refereed) Published
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.

Keywords
Congenital heart defects, Interview as topic, Parents, Pregnancy, Prenatal diagnosis
National Category
Nursing Specific Languages
Research subject
Caring Sciences
Identifiers
urn:nbn:se:uu:diva-244704 (URN)10.1371/journal.pone.0117995 (DOI)000350061500089 ()25692879 (PubMedID)
Funder
Riksbankens Jubileumsfond
Available from: 2015-02-20 Created: 2015-02-20 Last updated: 2018-01-11Bibliographically approved
Karlsson, A.-M., Melander Marttala, U. & Mattsson, E. (2014). "Vi kan inte visa ett normalt hjärta": Kommunikativa praktiker i samband med hjärtfel hos foster. In: Jan Lindström, Sofie Henricson, Anne Huhtala, Pirjo Kukkonen, Hanna Lehti-Eklund, Camilla Lindholm (Ed.), Svenskans beskrivning 33: . Paper presented at Svenskans beskrivning 33 (pp. 193-213). Helsingfors: Finska, finskugriska och nordiska institutionen, Helsingfors universitet
Open this publication in new window or tab >>"Vi kan inte visa ett normalt hjärta": Kommunikativa praktiker i samband med hjärtfel hos foster
2014 (Swedish)In: 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, Published paper (Refereed)
Place, publisher, year, edition, pages
Helsingfors: Finska, finskugriska och nordiska institutionen, Helsingfors universitet, 2014
Series
Nordica Helsingiensia 37, ISSN 1795-4428 ; 37
National Category
Specific Languages
Research subject
Scandinavian Languages
Identifiers
urn:nbn:se:uu:diva-239001 (URN)978-951-51-0120-4 (ISBN)978-951-51-0121-1 (ISBN)
Conference
Svenskans beskrivning 33
Available from: 2014-12-17 Created: 2014-12-17 Last updated: 2018-01-11
Melander Marttala, U. (2007). Förnuftiga män och känslosamma kvinnor? /Sensible men and emotional women?: Könsskillnader i dramadialog från 1700- och 1800-talet / Gender differences in drama dialogue from the 18th and 19th centuries. In: Språk och kön i nutida och historiskt perspektiv.: Studier presenterade vid Den sjätte nordiska konferensen om språk och kön (pp. 164-173).
Open this publication in new window or tab >>Förnuftiga män och känslosamma kvinnor? /Sensible men and emotional women?: Könsskillnader i dramadialog från 1700- och 1800-talet / Gender differences in drama dialogue from the 18th and 19th centuries
2007 (Swedish)In: Språk och kön i nutida och historiskt perspektiv.: Studier presenterade vid Den sjätte nordiska konferensen om språk och kön, 2007, p. 164-173Conference paper, Published paper (Other academic)
National Category
Specific Languages
Identifiers
urn:nbn:se:uu:diva-12115 (URN)
Available from: 2008-02-08 Created: 2008-02-08 Last updated: 2018-01-12Bibliographically approved
Melander Marttala, U. (2007). Språkbakgrund och språkförändring hos studenter – resultat från en enkätundersökning. In: Lainio, Jarmo & Leppänen, Annaliina (Ed.), Språklig mångfald och hållbar samhällsutveckling: Rapport från ASLA:s höstsymposium Eskilstuna, 9-10 november 2006 (pp. 225-240). Uppsala: ASLA
Open this publication in new window or tab >>Språkbakgrund och språkförändring hos studenter – resultat från en enkätundersökning
2007 (Swedish)In: Språklig mångfald och hållbar samhällsutveckling: Rapport från ASLA:s höstsymposium Eskilstuna, 9-10 november 2006 / [ed] Lainio, Jarmo & Leppänen, Annaliina, Uppsala: ASLA , 2007, p. 225-240Chapter in book (Other academic)
Place, publisher, year, edition, pages
Uppsala: ASLA, 2007
Series
ASLA:s skriftserie, ISSN 1100-5629 ; 20
National Category
Specific Languages
Identifiers
urn:nbn:se:uu:diva-15920 (URN)978-91-87884-20-7 (ISBN)
Available from: 2008-03-18 Created: 2008-03-18 Last updated: 2018-01-12Bibliographically approved
Melander Marttala, U. (2007). Studenters möte med universitetets språkmiljö: [University students and the linguistic milieu of the university]. Institutionen för nordiska språk, Uppsala universitet, Uppsala
Open this publication in new window or tab >>Studenters möte med universitetets språkmiljö: [University students and the linguistic milieu of the university]
2007 (Swedish)Report (Other academic)
Place, publisher, year, edition, pages
Institutionen för nordiska språk, Uppsala universitet, Uppsala, 2007. p. 66
Series
FUMS Rapport, ISSN 0348-5838; ISRN UU-FUMS-R-222--S--SE; ISSN 1102-9625 ; 222/19
National Category
Languages and Literature Specific Languages
Identifiers
urn:nbn:se:uu:diva-12116 (URN)
Note

Abstract in English

Available from: 2008-01-25 Created: 2008-01-25 Last updated: 2018-01-12
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