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          <dc:title xml:lang="ja">思春期の口唇裂・口蓋裂患者を育てる保護者の親子を取り巻く環境への関わり : 手術への意思決定を行う際に焦点をあてて</dc:title>
          <dc:title xml:lang="en">Parents' Participation in the Environment Surrounding a Parent and Adolescent Patient with Cleft Lip and/or Palate : Focusing on Decision-making for Surgery</dc:title>
          <dc:title xml:lang="ja-Kana">シシュンキ ノ コウシンレツ コウガイレツ カンジャ オ ソダテル ホゴシャ ノ オヤコ オ トリマク カンキョウ エ ノ カカワリ : シュジュツ エ ノ イシ ケッテイ オ オコナウ サイ ニ ショウテン オ アテテ</dc:title>
          <jpcoar:creator>
            <jpcoar:creatorName xml:lang="en">MATSUNAKA, Eriko</jpcoar:creatorName>
            <jpcoar:creatorName xml:lang="ja">松中, 枝理子</jpcoar:creatorName>
            <jpcoar:creatorName xml:lang="ja-Kana">マツナカ, エリコ</jpcoar:creatorName>
          </jpcoar:creator>
          <dc:rights xml:lang="ja">©2021 日本小児保健協会</dc:rights>
          <dc:rights xml:lang="ja">本文データは学協会の許諾に基づき学会公開のオンラインジャーナルから複製したものである</dc:rights>
          <jpcoar:subject xml:lang="ja" subjectScheme="Other">保護者</jpcoar:subject>
          <jpcoar:subject xml:lang="ja" subjectScheme="Other">口唇裂・口蓋裂</jpcoar:subject>
          <jpcoar:subject xml:lang="ja" subjectScheme="Other">思春期</jpcoar:subject>
          <jpcoar:subject xml:lang="ja" subjectScheme="Other">意思決定</jpcoar:subject>
          <jpcoar:subject xml:lang="ja" subjectScheme="Other">環境</jpcoar:subject>
          <jpcoar:subject xml:lang="en" subjectScheme="Other">parent</jpcoar:subject>
          <jpcoar:subject xml:lang="en" subjectScheme="Other">cleft lip and/or palate</jpcoar:subject>
          <jpcoar:subject xml:lang="en" subjectScheme="Other">adolescent</jpcoar:subject>
          <jpcoar:subject xml:lang="en" subjectScheme="Other">decision-making</jpcoar:subject>
          <jpcoar:subject xml:lang="en" subjectScheme="Other">environment</jpcoar:subject>
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          <datacite:description xml:lang="ja" descriptionType="Abstract">本研究は，思春期の口唇裂・口蓋裂（以下，CLP）患者と保護者が手術への意思決定を行う際，保護者が親子を取り巻く環境にどのような関わりを持っているのかを明らかにすることを目的とした。
12～18歳のCLP患者を育てる保護者12人を対象に半構造化面接を行い，質的帰納的に分析し，６カテゴリーを抽出した。
思春期の患者を育てる保護者は，患者の手術への意思決定を行う際に，親子を取り巻く環境に対して，【医師との信頼関係の構築】を行い，【夫婦間での協力体制の確立】，【親族からの支援の獲得】，【CLP患者を育てる他の保護者との交流の継続】を図っていた。さらに，保護者は，【学校生活と治療の調整】を図り，【公的制度の利用】をもって，患者の手術に臨んでいた。
思春期の患者と保護者が手術への意思決定を行う際，保護者は医師と信頼関係を構築しながら治療に取り組んでいることが示唆された。しかし，看護師に対する言及はなかった。医師の説明に看護師も同席し，患者や保護者の理解の程度や治療に対する意向を把握し，親子で納得できる選択を話し合うことができているのかを確認するような，更なる支援が必要である。また，医療者は患者や保護者と信頼関係を構築し，医療者自身が保護者の人的資源となるだけでなく，保護者のニーズに合わせて，保護者の人的資源の拡大を図ることも重要である。さらに，医療者は患者と保護者が学校生活と治療をどのように両立したいと考えているのか把握し，手術時期などの選択肢を提示する必要がある。</datacite:description>
          <datacite:description xml:lang="en" descriptionType="Abstract">This study aimed to clarify parents’ participation in the environment surrounding a parent and adolescent patient with cleft lip and/or palate when a parent and adolescent patient decided to undergo surgery to correct cleft lip and/or palate．Participants included 12 parents caring for adolescent patients admitted to a hospital for a surgical repair of cleft lip and/or palate．Data were collected through face︲to︲face semi︲structured interviews．They were analyzed qualitatively，using inductive content analysis．Six categories were extracted．Parents with adolescent patients had “established a better relationship with an attending physician，” “established a cooperation system between couples，” “acquired support from relatives，” and “continued an interchange with parents of other patients with cleft lip and/or palate．” Parents had adjusted adolescent patients’ life to be able to “balance treatment with school life．” They had faced the surgery of adolescent patients by “using a public system．”The results suggested that the parents with adolescent patients worked eagerly and showed increased reliability toward their physician when they consented to the surgery．However，none of their responses referred to the nurse．Further support is necessary to enable adolescent patients and their parents to select options consensually．When adolescent  patients and their parents decide to undergo surgery，a nurse attends to sessions in which an attending physician explains the procedure，and attempts to grasp patients’ and their parents’ intention for surgery and their degree of understanding of the physician’s explanation to confirm whether they can talk about a choice．It is important for medical staff to build a good relationship with patients and their parents， and to improve the human resources of parents in accordance with their needs．It is necessary that medical staff understand how adolescent patients and their parents attempt to balance school life and treatment， and accordingly offer choices，such as surgery time．</datacite:description>
          <datacite:description xml:lang="ja" descriptionType="Other">報告</datacite:description>
          <dc:publisher xml:lang="ja">日本小児保健協会</dc:publisher>
          <datacite:date dateType="Issued">2021</datacite:date>
          <dc:language>jpn</dc:language>
          <dc:type rdf:resource="http://purl.org/coar/resource_type/c_6501">journal article</dc:type>
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            <jpcoar:relatedTitle xml:lang="ja">日本小児保健協会</jpcoar:relatedTitle>
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            <jpcoar:relatedTitle xml:lang="ja">小児保健研究（オンラインジャーナル）</jpcoar:relatedTitle>
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            <jpcoar:relatedIdentifier identifierType="URI">https://www.jschild.med-all.net/Contents/private/cx3child/2021/008004/012/0519-0526.pdf</jpcoar:relatedIdentifier>
            <jpcoar:relatedTitle xml:lang="ja">オンラインジャーナル版</jpcoar:relatedTitle>
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          <jpcoar:sourceIdentifier identifierType="NCID">AN00116330</jpcoar:sourceIdentifier>
          <jpcoar:sourceIdentifier identifierType="PISSN">2433-2046</jpcoar:sourceIdentifier>
          <jpcoar:sourceTitle xml:lang="ja">小児保健研究</jpcoar:sourceTitle>
          <jpcoar:sourceTitle xml:lang="en">The journal of child health</jpcoar:sourceTitle>
          <jpcoar:volume>80</jpcoar:volume>
          <jpcoar:issue>4</jpcoar:issue>
          <jpcoar:pageStart>519</jpcoar:pageStart>
          <jpcoar:pageEnd>526</jpcoar:pageEnd>
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