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  • 1
    Online Resource
    Online Resource
    Wearing Masks in a Pediatric Hospital : Developing Practical Guidelines
    Springer Science and Business Media LLC ; 2004
    In:  Canadian Journal of Public Health Vol. 95, No. 4 ( 2004-7), p. 256-257
    Details
    In: Canadian Journal of Public Health, Springer Science and Business Media LLC, Vol. 95, No. 4 ( 2004-7), p. 256-257
    Type of Medium: Online Resource
    ISSN: 0008-4263 , 1920-7476
    URL: Article
    DOI: 10.1007/BF03405126
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2004
    detail.hit.zdb_id: 2599345-8
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  • 2
    Online Resource
    Online Resource
    Assessing the Informational Needs of Adolescents with a Genetic Condition: What Do They Want to Know?
    Wiley ; 2007
    In:  Journal of Genetic Counseling Vol. 16, No. 2 ( 2007-04), p. 201-210
    Details
    In: Journal of Genetic Counseling, Wiley, Vol. 16, No. 2 ( 2007-04), p. 201-210
    Abstract: Adolescence is a period of challenges that can be more stressful for someone with a genetic condition. The purpose of this descriptive pilot study was to assess the informational needs of adolescents with a genetic condition. To our knowledge, this is the first study that has attempted to identify these needs. A convenience sample of adolescents between 12–19 years of age with either phenylketonuria or congenital adrenal hyperplasia and who had not previously received genetic counseling was recruited. Recruitment ended once the themes were saturated ( n =17). A twenty item open/close‐ended questionnaire was used to assess participants’ knowledge of their genetic condition, what they wanted to know about their condition and in what manner. Almost all of the adolescents knew the name and genetic basis of their condition while most were aware of the risk of recurrence in a future pregnancy. Parents and doctors respectively, were identified as the primary and secondary sources of genetic information. Despite their evolving independence, almost all of the participants favoured receiving medical information with their parents present. The majority of participants felt that patients should begin receiving genetic information before the age of 12 years. Thematic analysis revealed that adolescents wanted to understand the science behind their condition, how their condition affects them, and how to manage it. The results highlight (i) the importance that adolescents place on parental involvement in their medical care (ii) that adolescents would like information about the genetics of their condition at a much younger age than when they usually receive genetic counseling and (iii) the benefits that can be gained by this patient population from receiving genetic counseling.
    Type of Medium: Online Resource
    ISSN: 1059-7700 , 1573-3599
    URL: Article
    DOI: 10.1007/s10897-006-9060-5
    Language: English
    Publisher: Wiley
    Publication Date: 2007
    detail.hit.zdb_id: 2016899-8
    SSG: 12
    SSG: 5,2
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  • 3
    Online Resource
    Online Resource
    Processes of Metastudy: A Study of Psychosocial Adaptation to Childhood Chronic Health Conditions
    SAGE Publications ; 2006
    In:  International Journal of Qualitative Methods Vol. 5, No. 1 ( 2006-03), p. 55-66
    Details
    In: International Journal of Qualitative Methods, SAGE Publications, Vol. 5, No. 1 ( 2006-03), p. 55-66
    Abstract: Metastudy introduces a systematically aggregated interpretive portrayal of a body of literature, based on saturation and the synthesis of findings. In this metastudy, the authors examined qualitative studies addressing psychosocial adaptation to childhood chronic health conditions, published over a 30-year period (1970–2000). They describe metastudy processes, including study identification, strategies for study search and retrieval, adjudication of difference in study design and rigor, and analysis of findings. They also illustrate metastudy components through examples drawn from this project and discuss implications for practice and recommendations.
    Type of Medium: Online Resource
    ISSN: 1609-4069 , 1609-4069
    URL: Article
    DOI: 10.1177/160940690600500105
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2006
    detail.hit.zdb_id: 2135788-2
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  • 4
    Online Resource
    Online Resource
    In the Darkness there can be Light: A Family's Adaptation to a Child's Blindness
    SAGE Publications ; 2005
    In:  Journal of Visual Impairment & Blindness Vol. 99, No. 4 ( 2005-04), p. 209-218
    Details
    In: Journal of Visual Impairment & Blindness, SAGE Publications, Vol. 99, No. 4 ( 2005-04), p. 209-218
    Abstract: Blindness or significant visual impairment can be very difficult for families to cope with. In this article, the authors present an in-depth case study of a family's journey through diagnosis and treatment for retinoblastoma (RB), a rare form of childhood eye cancer affecting the retina. As a part of the analysis of this family's experience, the authors examine assumptions about children's abilities to cope and predominant notions of quality of life through the experiences of one child, Alex, and his family. In spite of signs of psychological trauma, Alex demonstrated a remarkable adaptive ability and had more insights about his experiences than anticipated. Similarly, following a period of considerable worry for their child's health and his ability to adjust to blindness, the parents, too, feel their family has a good quality of life.
    Type of Medium: Online Resource
    ISSN: 0145-482X , 1559-1476
    URL: Article
    DOI: 10.1177/0145482X0509900403
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2005
    detail.hit.zdb_id: 2060706-4
    SSG: 5,3
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  • 5
    Online Resource
    Online Resource
    Tapping the Perspectives of Children : Emerging Ethical Issues in Qualitative Research
    SAGE Publications ; 2004
    In:  Qualitative Social Work Vol. 3, No. 4 ( 2004-12), p. 449-468
    Details
    In: Qualitative Social Work, SAGE Publications, Vol. 3, No. 4 ( 2004-12), p. 449-468
    Abstract: The unique ethical issues related to conducting research with children are insufficiently distinguished from issues in working with vulnerable groups, despite a shift to recognizing children as active in the research process. Qualitative researchers are challenged to consider complex ethical issues related to children and are obligated to protect their rights, freedoms, safety, and dignity. While some issues are similar to those in any research context, the nature of the researcher-participant relationship, and the unstructured nature of qualitative research methods, add a dimension of risk. This article examines ethical issues in qualitative research with children: (1) consent and assent; (2) the obligation to protect children from harm while respecting
    Type of Medium: Online Resource
    ISSN: 1473-3250 , 1741-3117
    URL: Article
    DOI: 10.1177/1473325004048025
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2004
    detail.hit.zdb_id: 2073436-0
    SSG: 3,4
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