参考文献

[1] MORAWSKA A,CALAM R,FRASER J.Parenting interventions for childhood chronic illness:a review and recommendations for intervention design and delivery[J].Journal of Child Health Care,2015,19(1):5-17.

[2] PAI A L,SCHWARTZ L A.Introduction to the special section:health care transitions of adolescents and young adults with pediatric chronic conditions[J].Journal of Pediatric Psychology,2011,36(2):129-133.

[3] BlUM R W,HIRSC D,KASTNER T A,et al.A consensus statement on health care transition for young adults with special health care needs[J].Pediatrics,2002,110(6):1304-1306.

[4] SANSOM-DALY U M,PEATE M,WAKEFIELD C E,et al.A systematic review of psychological interventions for adolescents and young adults living with chronic illness[J].Health Psychology,2012,31(3):380-393.

[5] 胡子奇，刘俊荣.医患共享决策的价值意蕴、影响因素及辅助工具[J].医学与哲学，2020,41(4):1-6.HU Z Q,LIU J R.Value,influencing factors and patient decision aid of sharing decision-making[J].Medicine & Philosophy,2020,41(4):1-6.

[6] JORDAN A,JOSEPH-WILLIAMS N,EDWARDS A,et al."I'd like to have more of a say because it's my body":adolescents' perceptions around barriers and facilitators to shared decision-making[J].Journal of Adolescent Health,2019,65(5):633-642.

[7] TAPP H,SHADE L,MAHABALESHWARKAR R,et al.Results from a pragmatic prospective cohort study:shared decision making improves outcomes for children with asthma[J].Journal of Asthma,2017,54(4):392-402.

[8] JORDAN A,WOOD F,EDWARDS A,et al.What adolescents living with long-term conditions say about being involved in decision-making about their healthcare:a systematic review and narrative synthesis of preferences and experiences[J].Patient Education and Counseling,2018,101(10):1725-1735.

[9] MILLER V A,FEUDTNER C,JAWAD A F.Children's decision-making involvement about research participation:associations with perceived fairness and self-efficacy[J].Journal of Empirical Research on Human Research Ethics,2017,12(2):87-96.

[10] MILLER V A,JAWAD A F.Decision-making involvement and prediction of adherence in youth with type 1 diabetes:a cohort sequential study[J].Journal of Pediatric Psychology,2019,44(1):61-71.

[11] 陈迎新，张霄，吕仕杰，等.青少年癫痫患者参与治疗决策意愿现状及影响因素研究[J].护士进修杂志，2022,37(7):660-663.CHEN Y X,ZHANG X,LYU S J,et al.Study on the status of adolescent epilepsy patients' preferences for decision-making in treatment participation and its influencing factors[J].Journal of Nurses Training,2022,37(7):660-663.

[12] 崔璀，陈文劲，李双子.癫痫青少年参与健康照护行为意向影响因素的质性研究[J].护士进修杂志，2021,36(4):317-322.CUI C,CHEN W J,LI S Z.Qualitative research for the influencing factors of adolescents patients with epilepsy participated in health care[J].Journal of Nurses Training,2021,36(4):317-322.

[13] NICE.Shared decision-making guidelines[EB/OL].(2021-06-17)[2025-09-14].https://www.nice.org.uk/guidance/ng197.

[14] NICE.Babies,children and young people's experience of healthcare [EB/OL].(2021-05-25)[2025-08-25].hhttps://www.nice.org.uk/guidance/ng204.

[15] COYNE I,AMORY A,KIERNAN G,et al.Children's participation in shared decision-making:children,adolescents,parents and healthcare professionals' perspectives and experiences[J].European Journal of Oncology Nursing,2014,18(3):273-280.

[16] MILLER V A,HARRIS D.Measuring children's decision-making involvement regarding chronic illness management[J].Journal of Pediatric Psychology,2012,37(3):292-306.

[17] MILLER V A.Involving youth with a chronic illness in decision-making:highlighting the role of providers[J].Pediatrics,2018,142(Suppl 3):S142-S148.

[18] 中国医药教育协会儿科专业委员会，中华医学会儿科学分会呼吸学组哮喘协作组，中国医师协会呼吸医师分会儿科呼吸工作委员会，等.青春期哮喘管理及向成人过渡管理的中国专家建议[J].中华实用儿科临床杂志，2023,38(2):93-103.Chinese Pediatric Society of the Chinese Medical Education Association,Asthma Collaboration Group of the Respiratory Group of the Pediatric Branch of the Chinese Medical Association,Pediatric Respiratory Working Committee of the Respiratory Physicians Branch of the Chinese Medical Doctor Association,et al.Chinese experts advice on adolescent asthma management and transitional care of adolescents with asthma[J].Chinese Journal of Applied Clinical Pediatrics,2023,38(2):93-103.

[19] OPEL D J.A 4-step framework for shared decision-making in pediatrics[J].Pediatrics,2018,142(Suppl 3):S149-S156.

[20] OPEL D J,VO H H,DUNDAS N,et al.Validation of a process for shared decision-making in pediatrics[J].Academic Pediatrics,2023,23(8):1588-1597.

[21] EATON S M,CLARK J D,CUMMINGS C L,et al.Pediatric shared decision-making for simple and complex decisions:findings from a Delphi panel[J].Pediatrics,2022,150(5):e2022057978.

[22] STREULI J C,ANDERSON J,ALEF-DEFOE S,et al.Combining the best interest standard with shared decision-making in paediatrics-introducing the shared optimum approach based on a qualitative study[J].European Journal of Pediatrics,2021,180(3):759-766.

[23] BRINKMAN W B,LIPSTEIN E A,TAYLOR J,et al.Design and implementation of a decision aid for juvenile idiopathic arthritis medication choices[J].Pediatric Rheumatology Online Journal,2017,15(1):48.

[24] TOUPIN-APRIL K,HUBER A M,DUFFY C M,et al.Development and acceptability of a patient decision aid for pain management in juvenile idiopathic arthritis:the JIA option map[J].The Patient-Patient-Centered Outcomes Research,2020,13(6):719-728.

[25] DARAISEH N M,BLACK A,MINAR P,et al.iBDecide:a web-based tool to promote engagement in shared decision-making among adolescents with ulcerative colitis[J].Patient Education and Counseling,2022,105(6):1628-1633.

[26] ROBERTSON E G,WAKEFIELD C E,COHN R J,et al.Piloting a parent and patient decision aid to support clinical trial decision making in childhood cancer[J].Psycho-oncology,2019,28(7):1520-1529.

[27] 李学靖，赵俊强，张小艳，等.渥太华决策支持框架内涵及其临床应用的范围综述[J].中华护理杂志，2022,57(6):756-762.LI X J,ZHAO J Q,ZHANG X Y,et al.The concept and clinical implementation status of Ottawa Decision Support Framework:a scoping review[J].Chinese Journal of Nursing,2022,57(6):756-762.

[28] BALTAG V,TAKEUCHI Y,GUTHOLD R,et al.Assessing and supporting adolescents' capacity for autonomous decision-making in health-care settings:new guidance from the World Health Organization[J].Journal of Adolescent Health,2022,71(1):10-13.

[29] ELWYN G,BARR P J,GRANDE S W,et al.Developing CollaboRATE:a fast and frugal patient-reported measure of shared decision making in clinical encounters[J].Patient Education and Counseling,2013,93(1):102-107.

[30] HERRLER A,HOFFMANN D U,GÖRIG T,et al.Assessing the extent of shared decision making in Pediatrics:preliminary psychometric evaluation of the German CollaboRATE pediatric scales for patients aged 7-18 years,parents and parent-proxy reports[J].Patient Education and Counseling,2022,105(6):1642-1651.

[31] SUTHERLAND-FOGGIO M,OLSAVSKY A L,SKEENS M A,et al.Mixed-method examination of factors associated with adolescent decision-making and involvement in care in the context of advanced cancer[J].Palliative & Supportive Care,2024,22(6):1-8.

[32] RUHE K M,DE CLERCQ E,WANGMO T,et al.Relational capacity:broadening the notion of decision-making capacity in paediatric healthcare[J].Journal of Bioethical Inquiry,2016,13(4):515-524.

[33] COYNE I,HARDER M.Children's participation in decision-making:balancing protection with shared decision-making using a situational perspective[J].Journal of Child Health Care,2011,15(4):312-319.

[34] RUHE K M,BADARAU D O,BRAZZOLA P,et al.Participation in pediatric oncology:views of child and adolescent patients[J].Psycho-Oncology,2016,25(9):1036-1042.

[35] KOLLER D.'Kids need to talk too':inclusive practices for children's healthcare education and participation[J].Journal of Clinical Nursing,2017,26(17/18):2657-2668.

[36] DAVID J G,LO M S,LANGER D A.Adolescent and parent perspectives on medical decision-making for chronic illness[J].Families,Systems & Health,2018,36(2):248-251.

[37] MADRIGAL V N,KELLY K P.Supporting family decision-making for a child who is seriously ill:creating synchrony and connection[J].Pediatrics,2018,142(Suppl 3):S170-S177.

[38] BOLAND L,GRAHAM I D,LÉGARÉ F,et al.Barriers and facilitators of pediatric shared decision-making:a systematic review[J].Implementation Science,2019,14(1):7.

[39] RUHE K M,WANGMO T,DE CLERCQ E,et al.Putting patient participation into practice in pediatrics-results from a qualitative study in pediatric oncology[J].European Journal of Pediatrics,2016,175(9):1147-1155.

[40] COYNE I,GALLAGHER P.Participation in communication and decision-making:children and young people's experiences in a hospital setting[J].Journal of Clinical Nursing,2011,20(15/16):2334-2343.

[41] 陈文劲，崔璀，郑显兰，等.儿童至成人过渡期癫痫青少年参与健康照护意向及影响因素研究[J].护理学杂志，2021,36(5):24-29.CHEN W J,CUI C,ZHENG X L,et al.Status and influencing factors of willingness of participation in health care among transitioning adolescents with epilepsy[J].Journal of Nursing Science,2021,36(5):24-29.

[42] ZEUNER R,FROSCH D L,KUZEMCHAK M D,et al.Physicians' perceptions of shared decision-making behaviours:a qualitative study demonstrating the continued chasm between aspirations and clinical practice[J].Health Expectations,2015,18(6):2465-2476.

[43] 杨林宁，郑红颖，赵丹，等.医生对医患共享决策认知的质性研究[J].中国全科医学，2022,25(10):1213-1219.YANG L N,ZHENG H Y,ZHAO D,et al.Physicians' perspective on shared decision-making:a qualitative study[J].Chinese General Practice,2022,25(10):1213-1219.

[44] SCHALKERS I,PARSONS C S,BUNDERS J F,et al.Health professionals' perspectives on children's and young people's participation in health care:a qualitative multihospital study[J].Journal of Clinical Nursing,2016,25(7/8):1035-1044.

[45] ABBASGHOLIZADEH RAHIMI S,RODRIGUEZ C,CROTEAU J,et al.Continuing professional education of Iranian healthcare professionals in shared decision-making:lessons learned[J].BMC Health Services Research,2021,21(1):225.