参考文献/References:
[1] 彭永宣, 杜欣为, 王顺民,等.多次手术的复杂先天性心脏病外科治疗预后的单中心分析 [J].中国胸心血管外科临床杂志, 2020, 27(6): 635-639.
[2] KEIZMAN E, TEJMAN-YARDEN S, MISHALI D, et al.The bilateral bidirectional glenn operation as a risk factor prior to fontan completion in complex congenital heart disease patients [J].World J Pediatr Congenit Heart Surg, 2019, 10(2): 174-181.
[3] O'BYRNE M L, MCBRIDE M G, PARIDON S, et al.Association of habitual activity and body mass index in survivors of congenital heart surgery: a study of children and adolescents with tetralogy of fallot, transposition of the great arteries, and fontan palliation [J].World J Pediatr Congenit Heart Surg, 2018, 9(2): 177-184.
[4] ANDERSON J B, BEEKMAN R H, KUGLER J D, et al.Improvement in interstage survival in a national pediatric cardiology learning network [J].Circ Cardiovasc Qual Outcomes, 2015, 8(4): 428-436.
[5] REMPEL G R, BLYTHE C, ROGERS L G, et al.The process of family management when a baby is diagnosed with a lethal congenital condition [J].J Fam Nurs, 2012, 18(1): 35-64.
[6] BEACHAM B L,DEATRICK J A.Adapting the family management styles framework to include children[J].J Pediatr Nurs,2019(45):26-36.
[7] PONIKOWSKI P, VOORS A A, ANKER S D, et al.2016 ESC guidelines for the diagnosis and treatment of acute and chronic heart failure: the task force for the diagnosis and treatment of acute and chronic heart failure of the European Society of Cardiology(ESC).Developed with the special contribution of the Heart Failure Association(HFA)of the ESC [J].Eur J Heart Fail, 2016, 18(8): 891-975.
[8] KUCZMARSKI R J, OGDEN C L, GUO S S, et al.2000 CDC growth charts for the United States: methods and development.[J].Vital Health Stat 11, 2002, 246(246): 1-190.
[9] 张莹.慢性病患儿家庭管理方式及家庭干预效果研究 [D].北京; 北京协和医学院护理学院, 2009.
[10]张莹, 魏珉.中文版家庭管理测量量表的信效度研究 [J].中国实用护理杂志,2009,25(5):19-22.
[11]栾风焕.中文版儿童用家庭功能评估量表(FFAS-C)的修订及应用 [D].上海:上海交通大学,2017.
[12]MUSSATTO K A, VAN ROMPAY M I, TRACHTENBERG F L, et al.Family function, quality of life, and well-being in parents of infants with hypoplastic left heart syndrome [J].J Fam Nurs,2021,27(3):222-234.
[13]李春玲.当代中国社会的声望分层——职业声望与社会经济地位指数测量 [J].社会学研究, 2005, 1(2): 74-102,244.
[14]MAZWI M L, HENNER N, KIRSCH R.The role of palliative care in critical congenital heart disease [J].Semin Perinatol, 2017, 41(2): 128-132.
[15]SIMEONE S, PLATONE N, PERRONE M, et al.The lived experience of parents whose children discharged to home after cardiac surgery for congenital heart disease [J].Acta Biomed, 2018, 89(4-S): 71-77.
[16]林楠.重庆地区白血病患儿家庭管理干预研究 [D].重庆:重庆医科大学, 2019.
[17]KAUGARS A, SHIELDS C, BROSIG C.Stress and quality of life among parents of children with congenital heart disease referred for psychological services [J].Congenit Heart Dis, 2018, 13(1): 72-78.
[18]宋厚梅, 刘林, 胡浩,等.变应性鼻炎儿童家庭管理水平现状及其影响因素分析 [J].解放军护理杂志, 2021, 38(1): 41-44.
[19]HARRISON T M.Improving neurodevelopment in infants with complex congenital heart disease [J].Birth Defects Res, 2019, 111(15): 1128-1140.