先天性心脏病患儿父母围手术期需求的调查研究

目的 描述我院收治的先天性心脏病患儿父母围手术期的需求,识别影响惠儿父母围手术期需求的因素.方法 运用描述比较性研究的方法,用目的 抽样方法选取802例患儿的父母,采用问卷调查患儿父母在减轻焦虑、了解患儿信息、帮助患儿、与患儿在一起、得到支持和安慰和环境设备等6个方面共34项内容.结果 患儿父母的总体需求得分为3.98,了解惠儿信息、减轻焦虑和帮助患儿位居6大类需求的前3位.影响患儿父母需求的相关因素包括患儿性别、年龄、疾病诊断的时间、父母职业和家庭收入.结论 护理人员应运用专业知识和技能,增加沟通,满足惠儿父母的信息需求.根据惠儿的特征,提供年龄适宜性照顾,提供以家庭为中心的护理,帮助父母参与患儿的照顾.     

1型糖尿病患儿母亲照顾需求的质性研究

目的 探讨1 型糖尿病患儿母亲居家照顾的需求,为护理人员制定满足患儿母亲照顾需求、促进其身心健康的护理措施提供依据.方法 采用质性研究中现象学的方法,对10 名学龄期1 型糖尿病患儿母亲进行半结构式的访谈,并用Colaizzi分析法进行资料分析.结果 本研究中,1 型糖尿病患儿母亲的照顾需求归纳为5 个主题:疾病信息需求;个人健康需求;家庭支持需求;社会支持需求;经济支持需求.结论 作为主要照顾者,1 型糖尿病患儿母亲在访谈中表达了强烈而广泛的照顾需求.护理人员应重视对1 型糖尿病患儿主要照顾者的需求评估,帮助其获得更多的正式和非正式的社会支持,并有针对性地提供居家护理的指导和咨询.     

脑瘫患儿主要照顾者家庭需求现状的调查分析及对策

目的了解脑瘫患儿主要照顾者的家庭需求及探讨其相应对策。方法采用一般情况调查表及脑瘫患儿家庭需求问卷对115例脑瘫患儿主要照顾者进行调查。结果脑瘫患儿主要照顾者的家庭需求问卷得分为(96.13±19.47)分,条目均分为(3.00±0.61)分,脑瘫患儿主要照顾者最主要需求前2项为信息需求和经济需求。结论脑瘫患儿主要照顾者的总体需求水平较高。加强和完善脑瘫患儿社区康复以及家庭主要照顾者社会支持,满足患儿照顾者的需求,以提高照顾者生活质量。     

NICU住院患儿父母需求调查分析

目的调查新生儿重症监护室(NICU)住院患儿父母需求情况。方法采用重症患者家属需求量表(CCFNI)调查NICU住院患儿父母的需求情况。结果患儿父母在病情保证因子方面需求最高,其次是亲近患儿的需求因子和获取信息因子,患儿父母自身的舒适因子往往被忽略。不同文化程度对病情保证因子需求不同,有显著性差异(P0.01)。结论 NICU医护人员在抢救患儿同时应关注患儿父母的需求,尤其是文化程度较高者,减轻患儿父母压力,增强治疗信心,重视与患儿父母的信息交流,同时应多提供母婴接触的机会。     

NICU患儿家长探视需求及护理对策分析

目的:探讨NICU患儿家长探视需求与其角色的关系及护理对策。方法:对我院我科2012年1～7月收治的200名足月儿家长发放调查问卷,主要调查患儿家长的探视需求、患儿家长的角色以及家长需求原因等内容。结果:87.30%的家长要求24 h陪护患儿,这可能是因为入院宣传教育工作不到位,使患儿家长对NICU认识不足造成的;患儿家长中的不同角色的探视需求不同,父母要求24 h陪护及增加探视次数方面与祖父祖母相比无统计学意义(P>0.05),而与外祖父外祖母及其他亲属相比有统计学意义(P<0.05);父母在延长探视时间方面与祖父祖母、外祖父外祖母相比无统计学意义(P>0.05),与其他亲属比较有统计学意义(P<0.05)。患儿家长提出陪护的原因主要担心患儿病情变化及担心医院照顾不周。结论:通过调查分析NICU患儿家长的探视需求,能够了解家长的心理状态,有针对性地采取相应的护理对策,消除其焦虑、无助的负面心理,在最大程度上得到患儿家长的信任与支持,确保NICU护理工作的顺利开展。     

白血病患儿父母照顾能力及其影响因素分析

目的探讨白血病患儿父母照顾能力现状及其影响因素。方法2018年5月至2019年6月,便利抽样法选取某三级甲等儿童医院血液科白血病患儿父母116例为研究对象,采用一般资料调查表、恶性血液病家庭照顾者照顾能力量表、中文版癌症患者照顾者支持性照护需求量表、一般自我效能感量表、医学应对方式问卷、领悟社会支持评定量表、焦虑自评量表对其进行调查。结果父母照顾能力总分为(49.53±15.08)分,疾病认知能力为(7.28±2.57)分,基础照护技能为(5.28±2.18)分,按需照护技能为(9.75±3.80)分,情感管理能力为(8.38±2.38)分,寻求利用支持的能力为(7.44±2.74)分,平衡照顾需求与个人需求能力为(11.41±4.72)分。父母照顾能力各维度的影响因素主要包括其自身文化程度、婚姻状况、共同照顾者数量、患儿年龄、父母日常生活需求、沟通人际需求、经济需求、一般自我效能感、应对方式、焦虑等(均P<0.05)。结论白血病患儿父母照顾能力有待提升,应基于照护能力影响因素给予针对性干预。     

哮喘患儿父母照顾负担及其影响因素研究

目的 探究哮喘患儿父母照顾负担水平及其影响因素,为制定各种减轻患儿父母照顾负担的措施提供参考依据。方法 采用一般资料问卷、Zarit护理负担量表、照顾者积极感受量表、父母应对方式量表、社会支持评定量表、一般自我效能感量表,对广州某三甲医院儿科门诊候诊的170例哮喘患儿父母进行横断面调查,采用逐步回归分析和结构方程模型分析照顾负担的影响因素。结果 76.5%的哮喘患儿父母存在轻到中度以上负担,患儿哮喘控制水平、患儿父母的学历、家庭人均月收入、父母应对方式、自我效能、积极感受均为照顾负担的直接影响因素。结构方程模型结果显示,社会支持是通过积极感受间接对照顾负担进行负向调节,社会支持对照顾负担总效应为-0.37。结论 照顾负担普遍存在于哮喘患儿父母中,其影响因素颇多,应基于照顾负担影响因素制定干预措施,以降低哮喘患儿父母的照顾负担。     

重症监护患儿父母心理需求及护理干预

目的 探讨重症监护患儿父母的心理需求及护理对策.方法 采用NICU患儿父母的心理需求量表,对400例患儿父母进行问卷调查.结果 患儿父母认为最重要的前10个需求是:能感觉到病情好转的希望、能让我了解患儿的预后结果、保证患儿得到最佳的救治、医护人员给出的解释通俗易懂、医务人员能如实回答我的问题等.影响NICU患儿父母需求的相关因素包括患儿父母性别、文化水平、家庭人均月收入、患儿性别及是否参加医疗保险.结论 护理人员增加有效沟通,针对性运用专业知识和技能,满足患儿父母的心理需求,达到提高医疗护理质量,减少医疗纠纷的发生.     

重症监护患儿父母心理需求及护理干预

目的 探讨重症监护患儿父母的心理需求及护理对策.方法 采用NICU患儿父母的心理需求量表,对400例患儿父母进行问卷调查.结果 患儿父母认为最重要的前10个需求是:能感觉到病情好转的希望、能让我了解患儿的预后结果、保证患儿得到最佳的救治、医护人员给出的解释通俗易懂、医务人员能如实回答我的问题等.影响NICU患儿父母需求的相关因素包括患儿父母性别、文化水平、家庭人均月收入、患儿性别及是否参加医疗保险.结论 护理人员增加有效沟通,针对性运用专业知识和技能,满足患儿父母的心理需求,达到提高医疗护理质量,减少医疗纠纷的发生.     

支气管肺发育不良早产儿父母出院准备需求的质性研究

目的 从新生儿重症监护室(NICU)支气管肺发育不良(BPD)早产儿父母的角度探讨其出院准备情况及居家照护信息需求,为采取科学有效的出院准备干预方案提供依据。方法 采用目的抽样方法,选取2021年12月-2022年8月入住贵州医科大学附属医院NICU的12名BPD早产儿父母为研究对象,采用质性研究的方法对BPD早产儿父母进行半结构式深入访谈,采用Colaizzi现象学分析法整理分析资料。结果 提炼出4个主题,即多样化知识需求、角色适应不足、出院准备不确定和情绪变化。结论 BPD患儿父母表示需要充分的准备和个性化的指导,以减少在过渡准备出院期间的焦虑和不确定性。因此需提高照顾技能和疾病相关知识,有助于父母的角色适应,并且多学科团队的支持指导可能对出院准备过程至关重要,尤其针对BPD早产儿的后期随访服务,为支气管肺发育早产儿家庭出院后延续性护理服务提供参考依据。     

Early intervention care programme for parents of neonates

Parents with neonates in the neonatal intensive care unit (NICU) experience different needs at different stages of their neonates' stay in the NICU. The needs of parents with neonates in NICU's play an important role in aspects such as the ability to cope with changing parental roles and emotions, the relationship between parent and infant and the managing of the parents' own needs. The aim of this study was to develop an intervention care programme for parents with neonates in the NICU. This intervention care programme will empower parents to manage their own needs and the needs of their neonates while the neonate is admitted to the NICU and after discharge from the NICU/hospital. Literature is available on care programmes for neonates, but not on programmes for the parents of neonates in NICU. The study was a multi-phased study, using qualitative methodologies to determine the needs of South African parents with neonates in level III NICU's. In phase I, the needs of parents with neonates in NICU were elicited qualitatively. The needs were identified from the data and the results led to the implementation of phase II. In phase II the question was adjusted and new data was collected. Phase III was implemented to validate the data derived from phases I and II. The data was categorised in different need categories and these categories were used to plan an intervention care programme for parents with neonates in NICU's. The programme provides information to address needs as identified by parents in the research study and as derived from the literature. Need categories identified from the study and literature were as follows: information, communication, emotional, learning, discharge and individual needs. This programme is available in electronic format to enable parents to obtain information according to their changing needs and to provide unlimited access to updated information. The "Early intervention care programme for parents of neonates" will empower parents to manage their own needs and the needs of their neonates while the neonate is admitted to the NICU and after discharge from the NICU/hospital.     

Early intervention care programme for parents of neonates

Parents with neonates in the neonatal intensive care unit (NICU) experience different needs at different stages of their neonates' stay in the NICU. The needs of parents with neonates in NICU's play an important role in aspects such as the ability to cope with changing parental roles and emotions, the relationship between parent and infant and the managing of the parents' own needs. The aim of this study was to develop an intervention care programme for parents with neonates in the NICU. This intervention care programme will empower parents to manage their own needs and the needs of their neonates while the neonate is admitted to the NICU and after discharge from the NICU / hospital. Literature is available on care programmes for neonates, but not on programmes for the parents of neonates in NICU. The study was a multi-phased study, using qualitative methodologies to determine the needs of South African parents with neonates in level III NICU's. In phase I, the needs of parents with neonates in NICU were elicited qualitatively. The needs were identified from the data and the results led to the implementation of phase II. In phase II the question was adjusted and new data was collected. Phase III was implemented to validate the data derived from phases I and II. The data was categorised in different need categories and these categories were used to plan an intervention care programme for parents with neonates in NICU's. The programme provides information to address needs as identified by parents in the research study and as derived from the literature. Need categories identified from the study and literature were as follows: information, communication, emotional, learning, discharge and individual needs. This programme is available in electronic format to enable parents to obtain information according to their changing needs and to provide unlimited access to updated information. The "Early intervention care programme for parents of neonates" will empower parents to manage their own needs and the needs of their neonates while the neonate is admitted to the NICU and after discharge from the NICU / hospital.     

The many roles of family members in "family-centered care"--part II. Interview by Deborah Dokken

This article highlights the role parents can play as advocates for their own children. A mother who is interviewed describes a nurse's support in helping her claim her baby as her own in the midst of the NICU environment and how that claiming led her to become involved in his care and a strong advocate for his needs. She shares advice for parents and health care providers. A physician who is interviewed discusses working with this mother and other parents, and describes ways health care professionals can support parents as advocates.     

确诊初期急性淋巴细胞性白血病患儿父母需求的质性研究

目的了解确诊初期的急性淋巴细胞性白血病患儿父母在患儿照护过程中的需求。方法运用质性现象学研究方法,对14例患儿父母进行深度的半结构访谈,并以内容分析法分析资料。结果急性淋巴细胞性白血病患儿父母需求可归纳为5个主题:信息需求,症状管理需求,心理社会需求,经济支持需求和高品质医疗需求。结论确诊初期的急性淋巴细胞性白血病患儿父母在照护过程中存在多种方面的需求,了解父母的需求有利于医护人员给予其多角度综合干预和支持。     

早产儿出院后父母居家照护需求调查分析

目的了解早产儿出院后父母的居家照护需求,探讨有效延续家庭护理的对策,为提高早产儿生存质量提供实证依据。方法自行设计调查问卷,采用方便抽样对105名出院初期早产儿父母的居家照护需求进行横断面问卷调查。结果早产儿父母的居家照护需求总得分为（3．30±0．81）分,各项照护需求依次为获得再保证需求（3．46±0．75）分、医疗信息需求（3．39±0．71）分、照护能力需求（3．29±0．86）分、社会支持需求（3．08±0．92）分。在22个单项需求中,早产儿父母认为接近非常重要的需求有10项,其余12项需求内容为重要和接近重要。结论出院后早产儿父母的居家照护需求较高,其照护需求呈现多层次、多方面,应根据早产儿父母的照护需求特点进行健康教育,实施以家庭为中心的护理,建立从医院过渡到家庭护理的健康管理模式。