摘要
目的通过研发并实施先心病患儿围术期“以家庭为中心”的护理模式,探讨该模式对缓解患儿术后疼痛、促进患儿心功能的恢复、以及缓解先心病患儿家长焦虑和提高家长对临床护理满意度的效果。
方法采用非同期对照研究,以方便抽样的方法抽取07年10月至07年12月在复旦大学附属儿科医院心脏中心接受先天性心脏病外科手术治疗的患儿及其家长52例为对照组;08年2月至5月的患儿及其家长51例为干预组。对照组沿用目前儿科临床护理模式,干预组实施包括全程信息提供与心理支持、父母参与围术期照护、家庭互助支持平台搭建等“以家庭为中心”的护理措施。以基本资料问卷收集患儿及其家庭的人口统计学资料及疾病资料,用先心病患儿术后并发症的发生率、平均住院天数以及术后心功能恢复情况来评价患儿术后生理功能恢复程度,分别用疼痛行为评估量表(Face Legs Activity Cry Consolability,FLACC)、状态焦虑问卷(StateAnxiety Inventory,SAI)、照护过程评价量表(Measure of Processes of Care,MPOC-56)及顾客满意度量表(Client Satisfaction Questionnaire,CSQ-8)评价两组患儿的术后疼痛程度、父母围术期的焦虑水平和对临床护理服务的满意度。分别于入院后手术前、手术期间、CCU阶段、普通病房康复阶段和出院前应用相应的问卷和量表收集资料,并使用SPSS 15.0进行分析统计。
结果两组在患儿及其家庭的基本资料构成上无差异。干预组患儿术后第1天FLACC疼痛评分与对照组患儿相比无明显差异(P＞0.05);术后第2天至第6天FLACC疼痛评分较对照组患儿明显降低,差异显著有统计学意义(P＜0.05);术后第7天及第8天FLACC疼痛评分差异无显著性(P＞0.05);干预组患儿其疼痛程度由重度向中度转变的中位天数较对照组患儿早0.4天,差异有统计学意义(P＜0.05);干预组患儿疼痛程度由中重度向轻度转变的中位天数较对照组患儿早1天,差异有统计学意义(P＜0.01)。干预组患儿心功能由Ⅲ～Ⅳ提高至Ⅱ级的中位天数较对照组患儿早0.95天,差异有统计学意义(P＜0.05);两组患儿术后并发症发生率、平均住院时间差异无统计学意义(P＞0.05)。对照组患儿父母在入院后手术前、手术期间等待过程、患儿CCU治疗监护期间以及术后病房康复治疗4个时期的SAI得分均高于国内常模,差异有统计学意义(P＜0.01);干预组患儿父母在入院后手术前、手术期间等待过程、患儿CCU治疗监护期间3个阶段的SAI均高于国内常模,差异有统计学意义(P＜0.05),术后病房阶段SAI得分与国内常模比较差异无统计学意义(P＞0.05);两组父母焦虑水平的变化趋势一样,即手术期间等待过程最为严重,其次为术前和术后CCU滞留期间,最低的是病房康复阶段(P＜0.05);干预组患儿父母在四个阶段的SAI得分均低于对照组,差异有统计学意义(P＜0.05)。干预组家庭的照护过程评价量表(MPOC-56)总得分以及在授权与合作(EP)、提供基本信息(PGI)、提供与患儿有关的特殊信息(PSI)、协调与全面的护理(CCC)、尊重与支持性护理(RSC)5个维度上的得分均显著高于对照组患儿父母(P＜0.01)。干预组家庭的顾客满意度量表(CSQ-8)得分显著高于对照组,差异有统计学意义(P＜0.01)。
结论“以家庭为中心”的护理模式能为先心病围术期患儿乃至整个家庭提供医疗护理服务,满足先心患儿及其家庭在围术期的各种需求,能有效促进先心病术后早期心功能的恢复并减轻患儿术后疼痛;能有效减轻父母围术期焦虑程度以及提高父母对临床医疗服务的满意度。
Objective By applying family-centered care to child with congenital heart disease (CHD)during their peri-operative period,so as to promote CHD patients'heart function recovery after surgery,alleviate patients' pain,relief patient parents' anxiety level and improve family's satisfaction with clinical nursing care.
Method Case control quasi experimental research design.52 CHD patients undergoing surgery in Children's hospital Fudan University from October 8th,2007 to January 2008 were selected as control group through subjective sampling.51 patients were selected from Feburary 2008 to May 2008 as intervention group.
The control group used the current mode of pediatric clinical care,while "family-centered care" model was carried out among the intervention group,including full implementation to provide information and psychological support,parental involvement in perioperative care,family to family support platform developing.
General information questionnaire was used to collect basic information on children and their families demographic and disease data.The incidence of postoperative complications,the average days of hospitalization and heart function degree were used to evualate the patient's recovery.State Anxiety Inventory(SAI) was used to evaluate the parents' anxiety degree during the whole peri-operative period.Face Legs Activity Cry Consolability(FLACC) questionnaire was used to assess patients' pain level and trend. Measure of Processes of Care(MPOC-56) and Client Satisfaction Questionnaire(CSQ-8) were used to evaluate the satisfaction of clinical care service from the CHD family.
SPSS 15.0 was used to analysis the datas.Mean,Std deviation,percentage,one-sample T test,independent-sample T test,Chi-square test,Pearson relative analysis,Kaplan-Meier and Lon-rank test were used in different datas.
Result There is no significant difference of the demographic data and disease data between two groups.There is no sighificant difference of the FLACC pain scale of the first day after surgery between the intervention group and the control group(P＞0.05);the FLACC scale of the intervention group was sighificantly lower than the control group from the second to sixth day after surgery(P＜0.05);there is also no sighificant difference of the FLACC pain scale of the seventh and eighth day after surgery between two groups (P＞0.05);the median day of intervention group children's pain changing from sever to moderate was 0.4 day earlier than the control group patients(P＜0.05);the median day of intervention group children with their pain level changing from sever or moderate to mild was 1 dayearlier than the control group patients(P＜0.01).
The median day of heart function from levelⅢ/Ⅳconvert to levelⅡin intervention group was 0.95 days earlier than the control group(P＜0.05);there is no significant difference of the incidence of postoperative complications and the average hospitalized days between two groups.
The SAI scores of pre-operation,intraoperation,CCU admition and post-operation in control group were significantly higher than the national norm(P＜0.01);the SAI scores of pre-operation,intraoperation,CCU admition in intervention group were significantly higher than the national norm(P＜0.01),but there is no significant difference of the post-operation SAI score between the intervention group and the national norm(P＞0.05); parents of two groups have the same anxiety changing trend,that is intra-operation is the most serious period,followed by pre-operative period,CCU admition and post-operative time(P＜0.05);the SAI scores in 4 stages were signinificantly lower in intervention group than in control group(P＜0.05).
The total score and 5 dimensions'scores(Enabling & Partnership,EP;Providing General Information,PGI;Providing Specific Information about the Child,PSI;Coordinated and Comprehensive,CCC;Respectful and Supportive care,RSC) of MPOC-56 were significantly higher in intervention group than in control group(P＜0.01);the total score of CSQ-8 was also significantly higher in intervention group than in control group (P＜0.01).
Conclusion "Family centered care" could provide excellent health care to the CHD patients and their family during perioperative period,to meet with their different needs, could promote CHD patients' heart function recovery after surgery,alleviate patients' pain, relief parents' anxiety and improve the family's satisfaction during their hospitalization with clinical nursing care procedure.
引文
1 郝芳之,杨兴学主编.临床儿科心脏病学.天津:天津科学技术出版社,1997:94-95
2 余更生,陈沅,田杰,等.先天性心脏病家族聚集的初步分析[J].临床心血管病杂志,2004,20(11):672-674
3 刘捷,曾超美,穆静等.新生儿先天性心脏的临床分析.中国生育健康杂志,2002,13(3):101-111
4 刘锦纷.小儿先天性心脏病治疗的新技术和新进展.2005,23(12):839-840
5 朱雄凯,柯雪琴,俞建根等.小儿先天性心脏病重度肺高压手术后远期疗效.中华小儿外科杂志.2003,24(4):314-316
6 朱国勇,陈胜喜,罗万俊等.体外循环心脏直视手术后死亡原因探讨.实用医学杂志.2006,22(22):2616-2618
7 苏肇伉.先天性心脏病外科进展.上海第二医科大学学报.2004,24(3):153-158
8 汪方东,叶璟,凌云等.心理干预对学龄前先天性心脏病儿术后适应性的影响.浙江预防医学.2003,15(5)49-50
9 Gupta,S.,Giuffre RM.,Crawford S,et al.Covert fears,anxiety and depression in congenital heart disease.Cardiol Young,1998,8(4):491-499
10 曾朝辉,陈丽华,李凤兰等.护理干预对先心病患儿及家属影响的研究.临床护理杂志.2006,5(1):10-11
12 Bowlby,J.Separation anxiety.The International Journal of Psycho-Analysis,1960,41:89-113
12 Blesch P,Fisher ML,.The impact of parental presence on parental anxiety and satisfaction.AORN J.1996;63:761-768.
13 Spitz,R.ospitalism:An inquiry into the genesis of psychiatric conditions in early childhood.The Psychoanalytic Study of the Child,1945,9:275-287
14 Ramey,C.,Bryant,D.,Wasik,B.,Sparlins,J.,Fendt,K.,& LaVange,L.Infant health and development program for low birth weight,premature infants:Program element,family participation,and child intelligence.Pediatrics.1992,89:454-465.
15 Weinstein,A.,Faust,D.,McKee,L.,& Padman,R.Outcome of short-term hospitalization for children with severe asthma.Journal of Allergy and Clinical Immunology.1992,90:66-75.
16 Gillette,Y.,& Hansen,N.,Robinson,J.,Kirkpatrick,K.,& Grywalski,R.Hospital-based case management for medically fragile infants:Results of a randomized trial.Patient Education and Counselling,1990,17:59-70.
17 郭加强,吴清玉.心脏外科护理学.人民卫生出版社.2003年2月第1版:166-183
18 Palmer S J.Care of sick children by parents:a meaningful role[J].Adv Nurs,1993,18(2):185.
19 Inger Kristensson-Hallstrom.Parental Participation in Pediatric Surgical Care.Association of Operating Room Nurse.AORN Journal.2000,71(5):1021-1028
20 向国平、彭文涛、颜金花.46例PICU患儿父母心理反应及护理.护理研究,2003,17(3):321-322
21 刘晓蓉、赵聪敏、于若谷等.先心病小儿父母的心理卫生状况调查分析.第三军医大学学报,2002,24(4):469
22 Damboise C,Cardin S.Family-centered critical care:how one unit implemented a plan[J].Am J Nursing,2003,103(6):56AA
23 Rhonda Board,Nancy Ryan-Wenger.State of the science on parental stress and family functioning in pediatric intensive care units.American Journal of Critical Care,2000,9(2):119
24 何萍萍,徐丽华,沈宁等.家长对“以家庭为中心护理”的认识.中华护理杂志,2005,40(12):885-887
25 Sherry Pye,Angela Green.Parent Education After Newborn Congenital Heart Surgery.Adv Neonatal Care,2003,3(3):147-156
26 Fond,K.Dealing with death and dying through family-centered care.Nursing Clinics of North America,1972,7:53-64.
27 Yauger,R.Does family-centered care make a difference? Nursing Outlook,1972,20:320-323
28 Rushton,C.Family-centered care in the critical care setting:Myth or reality?Children's Health Care.1990,19:68-78.
29 Nethercott S.A concept for all the family.Gamily-centred care:a concept analysis.Professional Nurse.1993,8(12):794-797
30 Caro,P.,& Derevensky,J.Family-focused intervention model:Implementation and research findings.Topics in Early Childhood Special Education,1991,11:66-80
31 Jane Dowling,Jeffery Vender,Sue Guilianelli,et.A Model of Family-Centered Care and Satisfaction Preictors[J].Chest,2005,128(3):81s-92s
32 张际、赵娟、潘传波.“以家庭为中心护理”在儿科的应用现状和展望.重庆医学,2005,34(6):932-934
33 Elizabeth Ahmann. Examining Assumptions Underlying Nursing Practce with Children and Families[J]. Pediatric Nursing, 1998, 23(5): 467～469
34 Rushton, C. Family-centered care in the critical care setting: Myth or reality? Children's Health Care, 1990,19: 68～78.
35 Shelton, T., Jeppson, E. & Johnson, B. Family-centered care for children with special health care needs. Washington, DC: Association for the Care of Children's Health.1987
36 沈宁、何萍萍、楼建华.家庭为中心的护理现状调查.中国实用护理杂志,2005, 21 (9): 65～66
37 Stephen Lawoko. Factors influencing satisfaction and well-being among parents of congenital heart disease children: development of a conceptual model based on the literature review. Scand J Caring Sci, 2007, 21:106～117
38 Jane Dowling, Jeffery Vender, Sue Guilianelli, et. A Model of Family-Centered Care and Satisfaction Preictors [J]. Chest, 2005,128(3): 81s～92s
39 M. Bjerre, M. LarssonA, M. Franzon, M. S. Nilsson. et al. Measure of Processes of Care (MPOC) applied to measure parent's perception of the habilitation process in Sweden. 2004 Blackwell Publishing Ltd, Child: Care, Health & Development. 30, 2: 123～120
40 Susanne King, Gillian King, Peter Rosenbaum. Evaluating Health Service Delivery to Children With Chronic Conditiions and Their Families: Development of a Refined Measure of Processes of Care (MPOC-20), Children's Health Care. 2004, 33(1): 35～57
41 P. Dyke, P. Buttigieg, A. M. Blackmore, A. Ghose. Use of the Measure of Process of Care for families (MPOC-56) and service providers (MPOC-SP) to evaluate family-centred services in a paediatric disability setting. The Cerebral Palsy Association of Western Australia, 2006:167～176
42 P. E. M. van Schie, R. C. Siebes, M. Ketelaar, A. Vermeer. The measure of processes of care (MPOC): validation of the Dutch translation. Child Care, Health and Development. 2004, 30(5 ): 529-539
43 Larsen, D.L., Attkisson, C.C., Hargreaves, W.A., and Nguyen, T.D. (). Assessment of client/patient satisfaction: Development of a general scale, Evaluation and Program Planning, 1979, 2:197～207
44 Attkisson, C.C., & Greenfield, T.K. The UCSF Client Satisfaction Scales: I. The Client Satisfaction Questionnaire-8. In M. Maruish (Ed.), The use of psychological testing for treatment planning andoutcome assessment.2004,3rd.Ed.
45 汪向东,王希林,马弘,等.心理卫生评定量表手册(增订版).北京:中国心理卫生杂志社,1999:205-209
46 孟凌新 崔健军.术后疼痛对小儿的危害及对策.辽宁医学杂志,2001,15(4):178-180
47 Wilson GAM,Doyle E.Validation of three pediatric pain scores for use by parents.Anesthesia,1996,51:1005-1007.
48 陈梅芳.婴儿和儿童疼痛评估的FLACC量表法[J].国外医学:护理学分册,2003,22(6):289-290
49 赵继军.疼痛护理学.北京.人民军医出版社.2002年5月第1版:293-304
50 肖仁梅 赵洪英.小儿术后疼痛控制及护理进展.中国实用护理杂志2005.21(1B):49-50
51 陈义璇,娄湘红,陈冬娥.家长参与患儿术后疼痛护理情况调查分析[J].护理学杂志,2004,19(8):71-72.
52 Kristensson HI.Strategies for feeling secure influence parents'participation in care[J].J Clin Nurs,1999,8(5):586.
53 Kristensson-Hallstrom I.Parent participation in pediatric surgical care[J].AORN J,2000,71(5):1021-1029.
54 李晋德 姜子菲 恽志平等.婴儿左向右高分流先天性心脏病的围术期处理.江苏医药杂志,2002,28(2):117-118
55 奚敏、邱荆安.先心病小儿父母的心理特征及护理方法.激光杂志,2003,24(6):34
56 Jerrold M.,John M.,David R.et al.Family-centered care and the pediatrician's role.Pediatrics,2003,112(3),691-696.
57 Doris K.,Linda J.,Joanne H.et al.Parent participation in the post-anesthesia care unit:fourteen years of progress at one hospital.[J]o Peri-anesthesia Nursing,1997,12(3):152-162.
58 何红姑 姜小鹰Katri V.et al.对非药物方法减轻儿童术后疼痛的调查研究.中华护理杂志,2004,39(3):161-164
59 Polkki T,Pietila AM,Vehvilainen-Julkunen K.Parental Views on Participation in Their Child's Pain Relief Measures and Recommendations to Health Care Providers[J].J Pediatr Nuts,2002,17(4):270-278.
60 Simons J,Franck L,Roberson E.Parent involvement in children's pain care:Views of parents and nurses[J].J Adv Nuts,2001,36(4):591-599.
61 汪方东、叶璟.小儿心脏术后监护期间父母压力及焦虑状况调查.中华护理杂志, 2003,38(7):497-499
62 Johnson,B.H.,Jeppson,E.S.,& Redburn,L.Caring for children and families:Guidelines for hospitals.Bethesda,MD:Association for the Care of Children's Health.1992
63 Angela CJ.Parent Participation in Care:Bridging the Gap in the Pediatric ICU[J].Newborn Infant Nurs Rev,2005,5(4):179-187
64 Hostler S L.Pediatric family-centered rehabilitation[J].J Head Trauma Rehabi1,1999,14(4):384
65 Callery P.Caring for parents of hospitalized children:A hidden area of nursing work[J].J Adv Nurs,1997,26(5):992-998.
66 Newton MS.Family-centered care:current realities in Parent participation[J].Pediatr Nurs,2000,26(2):164-168.
67 向国平,顾露.PICU患儿家长疾病信息需求与信息交流调查分析[J].护理学杂志,2003,18(5):344-346.
68 Siebes RC,Wijnroks L,Ketelaar M,et al.Parent participation in paediatric rehabilitation treatment centres in the Netherlands:a parents' viewpoint[J].Child Care Health Dev,2007,33(2):196-205.
[1]Coyne IT.Parent Participation:a concept analysis[J].J Adv Nurs,1996,23(4):733-740.
[2]Newton MS.Family-centered care:current realities in Parent participation[J].Pediatr Nurs,2000,26(2):164-168.
[3]Nethercott S.A concept for all the family.Family-centred care:a concept analysis[J].ProfNurse,1993,8(12):794-797.
[4]Kristensson-Hallstrom I.Parent participation in pediatric surgical care[J].AORN J,2000,71(5):1021-1029.
[5]Board R,Ryan-Wenger N.State of the science on parental stress and family functioning in pediatric intensive care units[J].Am J Crit Care,2000,9(2):106-122.
[6]陶庆芬,王玉琼,雷素华.住院患儿家长需求调查[J].现代预防医学,2000,7(4):59.
[7]Callery P,Smith L.A study of role negotiation between nurses and the parents of hospitalized children[J].J Adv Nurs,1991,16(7):772-781.
[8]Brown J,Ritchie JA.Nurse' perceptions of parent and nurse roles in caring for hospitalized children[J].Child Health Care,1990,19(1):28-36.
[9]Pongjaturawit Y,Harrigan RC.Parent Participation in the Care of Hospitalized Child in Thai and Western Cultures[J].Issues Compr Pediatr Nurs,2003,26(3):183-199.
[10]Keatinge D,Gilmore V.Shared care:A partnership between parents and nurses[J].Aust J Adv Nurs,1996,14(1):28-36.
[11]Balling K,McCubbin M.Hospitalized children with chronic illness:Parental care giving needs and valuing parental expertise[J].J Pediatr Nurs,2001,16(2):110-119.
[12]Kirsty BB,Elizabeth M.Great expectations? Parental participation in care[J].J Child Health Care,2000,4(2):60-65.
[13]Kristensson HI.Strategies for feeling secure influence parents'participation in care[J].J Clin Nurs,1999,8(5):586.
[14]Callery P.Maternal knowledge and professional knowledge:cooperation and conflict in the care of sick children[J].Int J Nurs Stud,1997,34(1):27-34.
[15]Watt-Watson J H,Evernden C,Lawson C.Parents' perceptions of their child's acute pain experience[J].J Pediatr Nurs,1990,5(5):344-349.
[16]陈义璇,娄湘红,陈冬娥.家长参与患儿术后疼痛护理情况调查分析[J].护理学杂志,2004,19(8):71-72.
[17]Polkki T,Pietila AM,Vehvilainen-Julkunen K.Parental Views on Participation in Their Child's Pain Relief Measures and Recommendations to Health Care Providers[J|.J Pediatr Nurs,2002, 17(4):270-278.
[18]Kristensson-Hallstrom I.Strategies for feeling secure influence parents' participation in care [J].J Clin Nuts,1999,8(5):586-592.
[19]Manworren RC.Development and testing of the pediatric nurses' knowledge and attitudes survey regarding pain[J].Pediatr Nurs,2001,27(2):151-158.
[20]Johnson A,Lindschau A.Staff attitudes toward parent participation in the care of children who are hospitalized[J].Pediatr Nurs,1996,22(2):99-102.
[21]Neill SJ.Parent participation 1:Literature review and methodology[J].Br J Nurs,1996,5(1):34-40.
[22]Neill SJ.Parent participation 2:Findings and their implications for practice[J].Br J Nurs,1996,5(2):110-117.
[23]Kawik L.Nurses' and parents' perceptions of participation and partnership in caring for a hospitalized child[J].Br J Nurs,1996,5(7):430-437.
[24]Blower K,Morgan E.Great expectations? Parental participation in care[J].J Child Health Care,2000,4(2):60-65.
[25]Heymann SJ,Toomey,Furstenberg F.Working parents:What factors are involved in their ability to take time off from work when their children are sick?[J].Arch Pediatr Adolesc Med,1999,153(8):870-874.
[26]Connell J,Bradley S.Visiting children in hospital:a vision from the past[J].Paediatr Nurs,2000,12(3):32-35.
[27]Balling K,McCubbin M.Hospitalized children with chronic illness:Parental care giving needs and valuing parental expertise[J].J Pediatr Nurs,2001,16(2):110-119.
[28]Simons J,Franck L,Roberson E.Parent involvement in children's pain care:Views of parents and nurses[J].J Adv Nurs,2001,36(4):591-599.
[29]de Lima RA,Rocha SM,Scochi CG.,et al.Involvement and fragmentation:A study of parental care of hospitalized children in Brazil[J].Pediatr Nurs,2001,27(6):559-564,580.
[30]Callery P.Caring for parents of hospitalized children:A hidden area of nursing work[J].J Adv Nuts,1997,26(5):992-998.
[31]Knight L.Child health.Negotiating care roles[J].Nurs Times,1995,91(27):31-33.
[32]向国平,顾露.PICU患儿家长疾病信息需求与信息交流调查分析[J].护理学杂志,2003,18(5):344-346.
[33]Siebes RC,Wijnroks L,Ketelaar M,et al.Parent participation in paediatric rehabilitation treatment centres in the Netherlands:a parents" viewpoint[J].Child Care Health Dev,2007,33(2):196-205.
[34]Angela CJ.Parent Participation in Care:Bridging the Gap in the Pediatric ICU[J].Newborn Infant Nurs Rev,2005,5(4):179-187
[35]Hutchfield K.Family-centred care:A concept analysis[J].J Adv Nurs,1999,29(5):1178-1187.
[36]张际,赵娟,潘传波.“以家庭为中心护理”在儿科的应用现状和展望[J],重庆医学,2005,34(6):932-934.
[37]Hostler SL,Christoph JM,Paarlberg J,et al.The Organizational Change Process;In SL Hostler (Ed),Family Centered Care:An Approach to Implementation[M].Charlottesville:University of Virginia,Children's Medical Center,Kluge Children's Rehabilitation Center:1994,45.