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遺伝子疾患の青少年におけるアイデンティティの発達と適応:臨床遺伝学のサービスを最適化するための戦略を開発するための質的に指向した混合方法の研究

Tasha Wainstein1,2, Cyrus Boelman3, Connie Ens4

  • 1Department of Medical Genetics, Faculty of Medicine, The University of British Columbia, Vancouver, BC, Canada. tasha.wainstein@bcchr.ca.

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まとめ

遺伝子疾患を持つ青年は アイデンティティの発達と適応において 独特の課題を経験します 遺伝子カウンセリングは 心理的な健康と 遺伝子診断の統合をサポートします

キーワード:
青少年障害者としてのアイデンティティ遺伝的条件遺伝子カウンセリング心理的適応

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科学分野:

  • 医学 遺伝学
  • 青少年 の 心理
  • バイオエシック

背景:

  • 青少年に対する遺伝カウンセリングは 成人のケアとは異なる 適応的なアプローチを必要とします
  • 障害のある若者の増加と 早期のゲノム検査により 最良の実践が求められます
  • 遺伝病と接し,理解し,生活する若者の認識を調査した.

研究 の 目的:

  • 10歳から19歳までの青少年が 遺伝子診断をどのように認識し 処理するかを調べる
  • 遺伝子疾患の青少年におけるアイデンティティの発達と心理的適応に影響を与える要因を理解する.
  • この集団のための最適化されたケアモデルの開発を促す.

主な方法:

  • 質的指向の横断的な混合方法の研究
  • 青年は心理的適応スケール (PAS) と病気のアイデンティティアンケート (IIQ) を完了しました.
  • フロネティック・イテラティブ・アナリストを用いて半構造面接を行い,分析した.

主要な成果:

  • 18人の青少年 (平均年齢15. 5歳) が参加し,様々な遺伝的疾患を患っていました.
  • 参加者は適切な心理的適応 (平均PAS3. 07) を示し,適応不良の疾患アイデンティティスコアよりもわずかに優れた適応性を示した.
  • 障害と遺伝的アイデンティティの発達に関する概念モデルが作成され,内在化プロセス,文脈的多様性,能力主義などの外部要因が強調されました.

結論:

  • この発見は 遺伝疾患の青少年に対する 最適なケアモデルを開発するための 基礎となるものです
  • 遺伝子カウンセリングへのアクセスを改善することは この集団におけるアイデンティティの発達を促進するために 極めて重要です
  • 改善された遺伝カウンセリングは 青少年が遺伝診断を統合し 心理的適応を向上させるのに役立ちます