遗传性胆汁淤积性肝病患儿家庭管理方式的质性研究
|
摘要
目的了解遗传性胆汁淤积性肝病患儿家庭管理方式,为针对性护理干预提供参考。方法采用现象学研究方法,对16名遗传性胆汁淤积性肝病患儿主要照顾者进行深入访谈,采用Colaizzi分析资料和提炼主题。结果共提炼出乐观适应型、茫然忍耐型及消极压抑型家庭管理方式3个主题。结论患儿家庭管理方式不容乐观,医护人员应重视评估其家庭管理方式和需求,给予针对性护理干预措施,改进家庭管理方式,从而改善结局。
Objective To explore family management styles(FMSs)in families of children with hereditary cholestatic liver disease,and to provide reference for targeted intervention.Methods Semi-structured,in-depth interviews were conducted on 16 parents of children with hereditary cholestatic liver disease.Data were analyzed using Colaizzi′s strategy in descriptive phenomenology.Results Three FMSs were identified:thriving and accommodating,uncertain and enduring,floundering and depressive.Conclusion Family management style in families who have children with cholestatic liver disease was not satisfactory.Medical personnel should assess FMS and care needs of families,provide targeted intervention to improve FMS of families and outcomes of children.
Objective To explore family management styles(FMSs)in families of children with hereditary cholestatic liver disease,and to provide reference for targeted intervention.Methods Semi-structured,in-depth interviews were conducted on 16 parents of children with hereditary cholestatic liver disease.Data were analyzed using Colaizzi′s strategy in descriptive phenomenology.Results Three FMSs were identified:thriving and accommodating,uncertain and enduring,floundering and depressive.Conclusion Family management style in families who have children with cholestatic liver disease was not satisfactory.Medical personnel should assess FMS and care needs of families,provide targeted intervention to improve FMS of families and outcomes of children.
引文
[1]European Association for the Study of the Liver.EASL Clinical Practice Guidelines:management of cholestatic liver diseases[J].J Hepatol,2009,51(2):237-267.
[2]王建设,库尔班江·阿布都西库尔,李丽婷.婴儿胆汁淤积性肝病基因诊断[J].中国实用儿科杂志,2013,28(4):254-257.
[3]Bj9rn F,Thierry L.Cholestasis in the newborn and infant[J].Clin Res Hepatol Gastroenterol,2014,38(3):263-267.
[4]Knafl K A,Deatrick J A.Family management style:concept analysis and development[J].J Pediatr Nurs,1990,5(1):4-14.
[5]Zhang Y,Wei M,Shen N,et al.Identifying factors related to family management during the coping process of families with childhood chronic conditions:a multi-site study[J].J Pediatr Nurs,2015,30(1):160-173.
[6]Deatrick J A,Thibodeaux A G,Mooney K,et al.Family Management Style Framework:a new tool with potential to assess families who have children with brain tumors[J].J Pediatr Oncol Nurs,2016,23(1):19-27.
[7]陈向明.质的研究方法与社会科学研究[M].北京:教育科学出版社,2000:401-408.
[8]孙玉倩,孙秉赋,崔颖,等.恶性肿瘤患儿心理行为问题与家庭管理方式的相关性研究[J].中国儿童保健杂志,2013,21(6):639-642.
[9]Dodgson J E,Garwick A,Blozis S A,et al.Uncertainty in childhood chronic conditions and family distress in families of young children[J].J Fam Nurs,2000,6(3):252-266.
[10]Lefkowitz D,Fowler A,Wray J.The transplant journey:psychosocial aspects of the different stages of the transplantation process[J].Pediatr Transplant,2014,18(2):123-124.
[11]张莹.慢性病患儿家庭管理方式及家庭干预效果研究[D].沈阳:中国协和医科大学,2009.
[12]蔡凌,魏水华,余诗军,等.对断指再植患儿实施认知行为干预的效果观察[J].护理学杂志,2012,27(18):32-33.
[13]董玲,顾菁.肾病综合征患儿家长的认知干预[J].护理学杂志,2006,21(5):60-61.
[14]Mendes-Castillo A M,Bousso R S,Ichikawa C R,et al.The use of the Family Management Style Framework to evaluate the family management of liver transplantation in adolescence[J].Rev Esc Enferm USP,2014,48(3):430-437.
[15]Baker A,Stevenson R,Dhawan A,et al.Guidelines for nutritional care for infants with cholestatic liver disease before liver transplantation[J].Pediatr Transplant,2007,11(8):825-834.
[16]Tajiri K,Shimizu Y.Recent advances in the management of pruritus in chronic liver diseases[J].World J Gastroenterol,2017,23(19):3418-3426.
[17]崔虹,余红春,毕燕玲,等.白血病患儿家庭综合关怀模式的构建及实施效果评价[J].护理学杂志,2015,30(17):20-22.
[18]Tsai S,Wang H.The relationship between caregiver′s strain and social support among mothers with intellectually disabled children[J].J Clin Nurs,2009,18(4):539-548.
[19]涂湘凤,邵江洁,刘美华,等.IKAP模式家庭干预对儿童感觉综合训练远期疗效的影响[J].护理学杂志,2012,27(7):45-47.
[2]王建设,库尔班江·阿布都西库尔,李丽婷.婴儿胆汁淤积性肝病基因诊断[J].中国实用儿科杂志,2013,28(4):254-257.
[3]Bj9rn F,Thierry L.Cholestasis in the newborn and infant[J].Clin Res Hepatol Gastroenterol,2014,38(3):263-267.
[4]Knafl K A,Deatrick J A.Family management style:concept analysis and development[J].J Pediatr Nurs,1990,5(1):4-14.
[5]Zhang Y,Wei M,Shen N,et al.Identifying factors related to family management during the coping process of families with childhood chronic conditions:a multi-site study[J].J Pediatr Nurs,2015,30(1):160-173.
[6]Deatrick J A,Thibodeaux A G,Mooney K,et al.Family Management Style Framework:a new tool with potential to assess families who have children with brain tumors[J].J Pediatr Oncol Nurs,2016,23(1):19-27.
[7]陈向明.质的研究方法与社会科学研究[M].北京:教育科学出版社,2000:401-408.
[8]孙玉倩,孙秉赋,崔颖,等.恶性肿瘤患儿心理行为问题与家庭管理方式的相关性研究[J].中国儿童保健杂志,2013,21(6):639-642.
[9]Dodgson J E,Garwick A,Blozis S A,et al.Uncertainty in childhood chronic conditions and family distress in families of young children[J].J Fam Nurs,2000,6(3):252-266.
[10]Lefkowitz D,Fowler A,Wray J.The transplant journey:psychosocial aspects of the different stages of the transplantation process[J].Pediatr Transplant,2014,18(2):123-124.
[11]张莹.慢性病患儿家庭管理方式及家庭干预效果研究[D].沈阳:中国协和医科大学,2009.
[12]蔡凌,魏水华,余诗军,等.对断指再植患儿实施认知行为干预的效果观察[J].护理学杂志,2012,27(18):32-33.
[13]董玲,顾菁.肾病综合征患儿家长的认知干预[J].护理学杂志,2006,21(5):60-61.
[14]Mendes-Castillo A M,Bousso R S,Ichikawa C R,et al.The use of the Family Management Style Framework to evaluate the family management of liver transplantation in adolescence[J].Rev Esc Enferm USP,2014,48(3):430-437.
[15]Baker A,Stevenson R,Dhawan A,et al.Guidelines for nutritional care for infants with cholestatic liver disease before liver transplantation[J].Pediatr Transplant,2007,11(8):825-834.
[16]Tajiri K,Shimizu Y.Recent advances in the management of pruritus in chronic liver diseases[J].World J Gastroenterol,2017,23(19):3418-3426.
[17]崔虹,余红春,毕燕玲,等.白血病患儿家庭综合关怀模式的构建及实施效果评价[J].护理学杂志,2015,30(17):20-22.
[18]Tsai S,Wang H.The relationship between caregiver′s strain and social support among mothers with intellectually disabled children[J].J Clin Nurs,2009,18(4):539-548.
[19]涂湘凤,邵江洁,刘美华,等.IKAP模式家庭干预对儿童感觉综合训练远期疗效的影响[J].护理学杂志,2012,27(7):45-47.