Identity development and adaptation in adolescents with genetic conditions: a qualitatively oriented mixed-methods study to develop strategies for optimizing clinical genetics services.

Saved in:
Bibliographic Details
Title: Identity development and adaptation in adolescents with genetic conditions: a qualitatively oriented mixed-methods study to develop strategies for optimizing clinical genetics services.
Authors: Wainstein, Tasha1,2 (AUTHOR) tasha.wainstein@bcchr.ca, Boelman, Cyrus3 (AUTHOR), Ens, Connie4 (AUTHOR), Gibson, William T.1,2 (AUTHOR), Gregory-Evans, Kevin1,5 (AUTHOR), Kolawole, Olubayo U.5 (AUTHOR), Marshall, Sheila K.6,7 (AUTHOR), Selby, Kathryn3 (AUTHOR), Knoppers, Bartha8 (AUTHOR), Lynd, Larry D.9,10 (AUTHOR), Dey, Alivia2,11 (AUTHOR), Adam, Shelin1,2 (AUTHOR), Bansback, Nick12,13 (AUTHOR), Birch, Patricia1,2 (AUTHOR), Clarke, Lorne1 (AUTHOR), Dragojlovic, Nick14 (AUTHOR), Friedman, Jan1,2 (AUTHOR), Lambert, Debby15 (AUTHOR), Pullman, Daryl16 (AUTHOR), Virani, Alice1,11 (AUTHOR)
Source: Orphanet Journal of Rare Diseases. 8/21/2025, Vol. 20 Issue 1, p1-20. 20p.
Database: Academic Search Ultimate
Full text is not displayed to guests.
FullText Links:
  – Type: pdflink
Text:
  Availability: 1
Header DbId: asn
DbLabel: Academic Search Ultimate
An: 187458644
AccessLevel: 2
PubType: Academic Journal
PubTypeId: academicJournal
PreciseRelevancyScore: 0
IllustrationInfo
Items – Name: Title
  Label: Title
  Group: Ti
  Data: Identity development and adaptation in adolescents with genetic conditions: a qualitatively oriented mixed-methods study to develop strategies for optimizing clinical genetics services.
– Name: Author
  Label: Authors
  Group: Au
  Data: <searchLink fieldCode="AR" term="%22Wainstein%2C+Tasha%22">Wainstein, Tasha</searchLink><relatesTo>1,2</relatesTo> (AUTHOR)<i> tasha.wainstein@bcchr.ca</i><br /><searchLink fieldCode="AR" term="%22Boelman%2C+Cyrus%22">Boelman, Cyrus</searchLink><relatesTo>3</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Ens%2C+Connie%22">Ens, Connie</searchLink><relatesTo>4</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Gibson%2C+William+T%2E%22">Gibson, William T.</searchLink><relatesTo>1,2</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Gregory-Evans%2C+Kevin%22">Gregory-Evans, Kevin</searchLink><relatesTo>1,5</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Kolawole%2C+Olubayo+U%2E%22">Kolawole, Olubayo U.</searchLink><relatesTo>5</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Marshall%2C+Sheila+K%2E%22">Marshall, Sheila K.</searchLink><relatesTo>6,7</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Selby%2C+Kathryn%22">Selby, Kathryn</searchLink><relatesTo>3</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Knoppers%2C+Bartha%22">Knoppers, Bartha</searchLink><relatesTo>8</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Lynd%2C+Larry+D%2E%22">Lynd, Larry D.</searchLink><relatesTo>9,10</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Dey%2C+Alivia%22">Dey, Alivia</searchLink><relatesTo>2,11</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Adam%2C+Shelin%22">Adam, Shelin</searchLink><relatesTo>1,2</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Bansback%2C+Nick%22">Bansback, Nick</searchLink><relatesTo>12,13</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Birch%2C+Patricia%22">Birch, Patricia</searchLink><relatesTo>1,2</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Clarke%2C+Lorne%22">Clarke, Lorne</searchLink><relatesTo>1</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Dragojlovic%2C+Nick%22">Dragojlovic, Nick</searchLink><relatesTo>14</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Friedman%2C+Jan%22">Friedman, Jan</searchLink><relatesTo>1,2</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Lambert%2C+Debby%22">Lambert, Debby</searchLink><relatesTo>15</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Pullman%2C+Daryl%22">Pullman, Daryl</searchLink><relatesTo>16</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Virani%2C+Alice%22">Virani, Alice</searchLink><relatesTo>1,11</relatesTo> (AUTHOR)
– Name: TitleSource
  Label: Source
  Group: Src
  Data: <searchLink fieldCode="JN" term="%22Orphanet+Journal+of+Rare+Diseases%22">Orphanet Journal of Rare Diseases</searchLink>. 8/21/2025, Vol. 20 Issue 1, p1-20. 20p.
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=asn&AN=187458644
RecordInfo BibRecord:
  BibEntity:
    Identifiers:
      – Type: doi
        Value: 10.1186/s13023-025-03968-x
    Languages:
      – Code: eng
        Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 20
        StartPage: 1
    Titles:
      – TitleFull: Identity development and adaptation in adolescents with genetic conditions: a qualitatively oriented mixed-methods study to develop strategies for optimizing clinical genetics services.
        Type: main
  BibRelationships:
    HasContributorRelationships:
      – PersonEntity:
          Name:
            NameFull: Wainstein, Tasha
      – PersonEntity:
          Name:
            NameFull: Boelman, Cyrus
      – PersonEntity:
          Name:
            NameFull: Ens, Connie
      – PersonEntity:
          Name:
            NameFull: Gibson, William T.
      – PersonEntity:
          Name:
            NameFull: Gregory-Evans, Kevin
      – PersonEntity:
          Name:
            NameFull: Kolawole, Olubayo U.
      – PersonEntity:
          Name:
            NameFull: Marshall, Sheila K.
      – PersonEntity:
          Name:
            NameFull: Selby, Kathryn
      – PersonEntity:
          Name:
            NameFull: Knoppers, Bartha
      – PersonEntity:
          Name:
            NameFull: Lynd, Larry D.
      – PersonEntity:
          Name:
            NameFull: Dey, Alivia
      – PersonEntity:
          Name:
            NameFull: Adam, Shelin
      – PersonEntity:
          Name:
            NameFull: Bansback, Nick
      – PersonEntity:
          Name:
            NameFull: Birch, Patricia
      – PersonEntity:
          Name:
            NameFull: Clarke, Lorne
      – PersonEntity:
          Name:
            NameFull: Dragojlovic, Nick
      – PersonEntity:
          Name:
            NameFull: Friedman, Jan
      – PersonEntity:
          Name:
            NameFull: Lambert, Debby
      – PersonEntity:
          Name:
            NameFull: Pullman, Daryl
      – PersonEntity:
          Name:
            NameFull: Virani, Alice
    IsPartOfRelationships:
      – BibEntity:
          Dates:
            – D: 21
              M: 08
              Text: 8/21/2025
              Type: published
              Y: 2025
          Identifiers:
            – Type: issn-print
              Value: 17501172
          Numbering:
            – Type: volume
              Value: 20
            – Type: issue
              Value: 1
          Titles:
            – TitleFull: Orphanet Journal of Rare Diseases
              Type: main
ResultId 1