不同家庭照护模式对慢性病患儿生活质量的影响
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摘要
目的探讨不同家庭照护模式对慢性病患儿生活质量的影响。方法采用方便抽样法选取2016年6月至2017年7月在上海市2所三级甲等儿童医院住院的8~18岁慢性病患儿394例及其主要照护者作为研究对象,应用一般资料问卷、中文版家庭管理测量量表、儿童生活质量普适性核心量表进行调查。通过SPSS20.0采用聚类分析方法将患儿家庭进行分类,比较不同类型家庭的一般特征及患儿生活质量状况。结果慢性病患儿家庭照护模式可分为4类:管理有效型、基本适应型、能力欠缺型和管理困难型。4类家庭照护模式中患儿的病程、半年内住院次数、住院天数、缺课天数、是否独生子女、家庭月收入、父母文化程度、父母职业、患儿生活质量总分及各维度得分差异有统计学意义(P<0.05)。多元分层回归结果显示:病程、半年内缺课天数、能力欠缺型和管理困难型家庭照护模式与患儿总体生活质量相关(分别β=-0.119,-0.147,-0.248,-0.294,均P<0.05),解释了患儿生活质量23.1%的变异量。结论慢性病患儿家庭采用的4类家庭照护模式与患儿生活质量密切相关,医护人员可根据不同照护模式的特征和差异为慢性病患儿家庭制定更精准的疾病管理计划,有效促进患儿生活质量的改善。
Objective To identify the effect of different family management patterns for children with chronic diseases on their quality of life. Methods A total of 394 chronically ill children aged 8 to 18 years and their caregivers were recruited from 2 Grade-3 Class-A children hospitals in Shanghai from June 2016 to July 2017 through convenience sampling. A demographic questionnaire, Family Management Measure( Fa MM) and Pediatric Quality of Life Inventory 4. 0 Generic Core Scale( Peds QLTM4. 0) were employed to survey the participants. Cluster analysis was performed using SPSS 20. 0 based on the scores of 6 Fa MM subscales to categorize different patterns of family management. General characteristics and quality of life of the children were compared in different types of families. Results There were 4 identified clusters in family management patterns,that is,effective managing,adaptive managing,incompetent managing,and difficult managing. Significant differences existed in the disease duration,times of hospitalizations within half a year,length of hospital stay, days absent from school, one-child family, family monthly income, parental educational level,parental occupation,and total scores and score of every dimension of quality of life among the children from the 4 clusters( P < 0. 05). Multiple regression analysis showed that disease duration,days absent from school within half a year, and incompetent and difficult family management patterns were associated with children's overall quality of life( β =-0. 119,-0. 147,-0. 248,-0. 294; P < 0. 05),and they accounted for 23. 1% of the variance of children's quality of life. Conclusion There are 4 different family management patterns for children with chronic diseases,and they are closely associated with their quality of life. Doctors and nurses can make more accurate disease management plans for the families of children with chronic diseases according to the characteristics and differences of different family management patterns,which can effectively improve the quality of life.
Objective To identify the effect of different family management patterns for children with chronic diseases on their quality of life. Methods A total of 394 chronically ill children aged 8 to 18 years and their caregivers were recruited from 2 Grade-3 Class-A children hospitals in Shanghai from June 2016 to July 2017 through convenience sampling. A demographic questionnaire, Family Management Measure( Fa MM) and Pediatric Quality of Life Inventory 4. 0 Generic Core Scale( Peds QLTM4. 0) were employed to survey the participants. Cluster analysis was performed using SPSS 20. 0 based on the scores of 6 Fa MM subscales to categorize different patterns of family management. General characteristics and quality of life of the children were compared in different types of families. Results There were 4 identified clusters in family management patterns,that is,effective managing,adaptive managing,incompetent managing,and difficult managing. Significant differences existed in the disease duration,times of hospitalizations within half a year,length of hospital stay, days absent from school, one-child family, family monthly income, parental educational level,parental occupation,and total scores and score of every dimension of quality of life among the children from the 4 clusters( P < 0. 05). Multiple regression analysis showed that disease duration,days absent from school within half a year, and incompetent and difficult family management patterns were associated with children's overall quality of life( β =-0. 119,-0. 147,-0. 248,-0. 294; P < 0. 05),and they accounted for 23. 1% of the variance of children's quality of life. Conclusion There are 4 different family management patterns for children with chronic diseases,and they are closely associated with their quality of life. Doctors and nurses can make more accurate disease management plans for the families of children with chronic diseases according to the characteristics and differences of different family management patterns,which can effectively improve the quality of life.
引文
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[6]杨娟娟,陈英,崔金锐,等.肾病综合征患儿生存质量与家庭管理状况的相关性研究[J].护理学杂志,2017,32(9):20-22.DOI:10.3870/j.issn.1001-4152.2017.09.020.YANG J J,CHEN Y,CUI J R,et al.Relationship between quality of life and family management status among children with nephrotic syndrome[J].J Nursing Sci,2017,32(9):20-22.DOI:10.3870/j.issn.1001-4152.2017.09.020.
[7]ZHANG Y,WEI M,ZHANG Y,et al.Chinese family management of chronic childhood conditions:a cluster analysis[J].J Spec Pediatr Nurs,2014,19(1):39-53.DOI:10.1111/jspn.12046.
[8]KNAFL K A,DEATRICK J A,KNAFL G J,et al.Patterns of family management of childhood chronic conditions and their relationship to child and family functioning[J].J Pediatr Nurs,2013,28(6):523-535.DOI:10.1016/j.pedn.2013.03.006.
[9]CONLON K E,STRASSLE C G,VINH D,et al.Family management styles and ADHD:utility and treatment implications[J].J Fam Nurs,2008,14(2):181-200.DOI:10.1177/1074840708315673.
[10]卢奕云,田琪,郝元涛,等.儿童生存质量测定量表Peds QL4.0中文版的信度和效度分析[J].中山大学学报(医学科学版),2008,29(3):328-331.DOI:10.3321/j.issn:1672-3554.2008.03.018.LU Y Y,TIAN Q,HAO Y T,et al.Reliability and validity for Chinese version of pediatric quality of life inventory Peds QL4.0[J].J Sun Yat-Sen Univ(Med Sci),2008,29(3):328-331.DOI:10.3321/j.issn:1672-3554.2008.03.018.
[11]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(5B):19-22.DOI:10.3760/cma.j.issn.1672-7088.2009.05.050.ZHANG Y,WEI M.Validity and reliability of the Chinese version of family management measure[J].Chin J Prac Nurs,2009,25(5B):19-22.DOI:10.3760/cma.j.issn.1672-7088.2009.05.050.
[12]邓芳菊,林丽,欧阳文姝,等.家属协同护理对肾病综合征患儿生活质量的影响[J].齐鲁护理杂志,2016,22(5):115-116.DOI:10.3969/j.issn.1006-7256.2016.05.060.DENG F J,LIN L,OUYANG W S,et al.Effect of family cooperative nursing on quality of life of children with nephrotic syndrome[J].J Qilu Nursing,2016,22(5):115-116.DOI:10.3969/j.issn.1006-7256.2016.05.060.
[13]刘延迪,王红艳,李梅,等.陪伴教育对提高青少年1型糖尿病患者生活质量及家庭亲密度和适应性的效果[J].解放军护理杂志,2016,33(2):26-28,34.DOI:10.3969/j.issn.1008-9993.2016.02.007.LIU Y D,WANG H Y,LI M,et al.Effect of accompanied education in improving the quality of life in adolescents with type 1 diabetes and their family cohesion and adaptability evaluation[J].Nurs J Chin PLA,2016,33(2):26-28,34.DOI:10.3969/j.issn.1008-9993.2016.02.007.
[14]孙玉倩,孙秉赋,王凤玲,等.恶性肿瘤患儿家庭管理方式及影响因素调查研究[J].中国全科医学,2013,16(9):1016-1019.DOI:10.3969/j.issn.1007-9572.2013.09.018.SUN Y Q,SUN B F,WANG F L,et al.Study on family management style and influencing factors of childhood cancer[J].Chin General Practice,2013,16(9):1016-1019.DOI:10.3969/j.issn.1007-9572.2013.09.018.
[15]LAYTE R,MCCRORY C.Paediatric chronic illness and educational failure:the role of emotional and behavioural problems[J].Soc Psychiatry Psychiatr Epidemiol,2013,48(8):1307-1316.DOI:10.1007/s00127-012-0609-3.
[16]LOHAN A,MORAWSKA A,MITCHELL A.Associations Between Parental Factors and Child Diabetes-ManagementRelated Behaviors[J].J Dev Behav Pediatr,2017,38(5):330-338.DOI:10.1097/DBP.0000000000000447.
[17]MITCHELL S J,SEE H M,TARKOW A K H,et al.Conducting studies with fathers:Challenges and opportunities[J].Appl Dev Sci,2007,11(4):239-244.DOI:10.1080/10888690701762159.
[18]MCGOWAN P T.Self-management education and support in chronic disease management[J].Prim Care,2012,39(2):307-325.DOI:10.1016/j.pop.2012.03.005.
[19]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.SUN Y Q,SUN B F,CUI Y,et al.Study on the relationship of behavioral problems of children with cancer and family management style[J].Chin J Child Health Care,2013,21(6):639-642.
[20]李雪雅,吴婷.哮喘儿童的行为问题与家庭管理方式的关系[J].神经损伤与功能重建,2015,10(6):523-524,535.DOI:10.3870/sjsscj.2015.06.018.LI X Y,WU T.Relationship on the behavioral problems and family management style in children with asthma[J].Neural Injury Funct Reconstr,2015,10(6):523-524.DOI:10.3870/sjsscj.2015.06.018.
[21]UPADHYAY A,MISHRA O P,PRASAD R,et al.Behavioural abnormalities in children with new-onset nephrotic syndrome receiving corticosteroid therapy:results of a prospective longitudinal study[J].Pediatr Nephrol,2016,31(2):233-238.DOI:10.1007/s00467-015-3216-1.
[22]张燕,绳宇.恶性骨肿瘤患儿生活质量及影响因素的研究[J].中华护理杂志,2015,50(4):423-427.DOI:10.3761/j.issn.0254-1769.2015.04.009.ZHANG Y,SHENG Y.The level and influence factors of the health-related quality of life in children with bone tumors[J].Chin J Nurs,2015,50(4):423-427.DOI:10.3761/j.issn.0254-1769.2015.04.009.
[2]中华人民共和国国家统计局.2010年第六次全国人口普查主要数据公报(第1号)[J].北京周报(英文版),2011,54(22):4-6.National Bureau of Statistics of The People’s Republic of China.The main data census of the sixth national census in 2010[J].Beijing Review(English Ver.),2011,54(22):4-6.
[3]中华医学会儿科学分会肾脏病学组.91所医院1990~2002年小儿慢性肾衰竭1 268例调查报告[J].中华儿科杂志,2004,42(10):724-730.DOI:10.3760/j.issn:0578-1310.2004.10.002.The Chinese Society of Pediatric Nephrology.Analysis of1 268 patients with chronic renal failure in childhood:a report from 91 hospitals in China from 1990 to 2002[J].Chin J Pediatr,2004,42(10):724-730.DOI:10.3760/j.issn:0578-1310.2004.10.002.
[4]SILVA N,CARONA C,CRESPO C,et al.Quality of life in pediatric asthma patients and their parents:a meta-analysis on 20 years of research[J].Expert Rev Pharmacoecon Outcomes Res,2015,15(3):499-519.DOI:10.1586/14737167.2015.1008459.
[5]FERRO M A,BOYLE M H.The impact of chronic physical illness,maternal depressive symptoms,family functioning,and self-esteem on symptoms of anxiety and depression in children[J].J Abnorm Child Psychol,2015,43(1):177-187.DOI:10.1007/s10802-014-9893-6.
[6]杨娟娟,陈英,崔金锐,等.肾病综合征患儿生存质量与家庭管理状况的相关性研究[J].护理学杂志,2017,32(9):20-22.DOI:10.3870/j.issn.1001-4152.2017.09.020.YANG J J,CHEN Y,CUI J R,et al.Relationship between quality of life and family management status among children with nephrotic syndrome[J].J Nursing Sci,2017,32(9):20-22.DOI:10.3870/j.issn.1001-4152.2017.09.020.
[7]ZHANG Y,WEI M,ZHANG Y,et al.Chinese family management of chronic childhood conditions:a cluster analysis[J].J Spec Pediatr Nurs,2014,19(1):39-53.DOI:10.1111/jspn.12046.
[8]KNAFL K A,DEATRICK J A,KNAFL G J,et al.Patterns of family management of childhood chronic conditions and their relationship to child and family functioning[J].J Pediatr Nurs,2013,28(6):523-535.DOI:10.1016/j.pedn.2013.03.006.
[9]CONLON K E,STRASSLE C G,VINH D,et al.Family management styles and ADHD:utility and treatment implications[J].J Fam Nurs,2008,14(2):181-200.DOI:10.1177/1074840708315673.
[10]卢奕云,田琪,郝元涛,等.儿童生存质量测定量表Peds QL4.0中文版的信度和效度分析[J].中山大学学报(医学科学版),2008,29(3):328-331.DOI:10.3321/j.issn:1672-3554.2008.03.018.LU Y Y,TIAN Q,HAO Y T,et al.Reliability and validity for Chinese version of pediatric quality of life inventory Peds QL4.0[J].J Sun Yat-Sen Univ(Med Sci),2008,29(3):328-331.DOI:10.3321/j.issn:1672-3554.2008.03.018.
[11]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(5B):19-22.DOI:10.3760/cma.j.issn.1672-7088.2009.05.050.ZHANG Y,WEI M.Validity and reliability of the Chinese version of family management measure[J].Chin J Prac Nurs,2009,25(5B):19-22.DOI:10.3760/cma.j.issn.1672-7088.2009.05.050.
[12]邓芳菊,林丽,欧阳文姝,等.家属协同护理对肾病综合征患儿生活质量的影响[J].齐鲁护理杂志,2016,22(5):115-116.DOI:10.3969/j.issn.1006-7256.2016.05.060.DENG F J,LIN L,OUYANG W S,et al.Effect of family cooperative nursing on quality of life of children with nephrotic syndrome[J].J Qilu Nursing,2016,22(5):115-116.DOI:10.3969/j.issn.1006-7256.2016.05.060.
[13]刘延迪,王红艳,李梅,等.陪伴教育对提高青少年1型糖尿病患者生活质量及家庭亲密度和适应性的效果[J].解放军护理杂志,2016,33(2):26-28,34.DOI:10.3969/j.issn.1008-9993.2016.02.007.LIU Y D,WANG H Y,LI M,et al.Effect of accompanied education in improving the quality of life in adolescents with type 1 diabetes and their family cohesion and adaptability evaluation[J].Nurs J Chin PLA,2016,33(2):26-28,34.DOI:10.3969/j.issn.1008-9993.2016.02.007.
[14]孙玉倩,孙秉赋,王凤玲,等.恶性肿瘤患儿家庭管理方式及影响因素调查研究[J].中国全科医学,2013,16(9):1016-1019.DOI:10.3969/j.issn.1007-9572.2013.09.018.SUN Y Q,SUN B F,WANG F L,et al.Study on family management style and influencing factors of childhood cancer[J].Chin General Practice,2013,16(9):1016-1019.DOI:10.3969/j.issn.1007-9572.2013.09.018.
[15]LAYTE R,MCCRORY C.Paediatric chronic illness and educational failure:the role of emotional and behavioural problems[J].Soc Psychiatry Psychiatr Epidemiol,2013,48(8):1307-1316.DOI:10.1007/s00127-012-0609-3.
[16]LOHAN A,MORAWSKA A,MITCHELL A.Associations Between Parental Factors and Child Diabetes-ManagementRelated Behaviors[J].J Dev Behav Pediatr,2017,38(5):330-338.DOI:10.1097/DBP.0000000000000447.
[17]MITCHELL S J,SEE H M,TARKOW A K H,et al.Conducting studies with fathers:Challenges and opportunities[J].Appl Dev Sci,2007,11(4):239-244.DOI:10.1080/10888690701762159.
[18]MCGOWAN P T.Self-management education and support in chronic disease management[J].Prim Care,2012,39(2):307-325.DOI:10.1016/j.pop.2012.03.005.
[19]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.SUN Y Q,SUN B F,CUI Y,et al.Study on the relationship of behavioral problems of children with cancer and family management style[J].Chin J Child Health Care,2013,21(6):639-642.
[20]李雪雅,吴婷.哮喘儿童的行为问题与家庭管理方式的关系[J].神经损伤与功能重建,2015,10(6):523-524,535.DOI:10.3870/sjsscj.2015.06.018.LI X Y,WU T.Relationship on the behavioral problems and family management style in children with asthma[J].Neural Injury Funct Reconstr,2015,10(6):523-524.DOI:10.3870/sjsscj.2015.06.018.
[21]UPADHYAY A,MISHRA O P,PRASAD R,et al.Behavioural abnormalities in children with new-onset nephrotic syndrome receiving corticosteroid therapy:results of a prospective longitudinal study[J].Pediatr Nephrol,2016,31(2):233-238.DOI:10.1007/s00467-015-3216-1.
[22]张燕,绳宇.恶性骨肿瘤患儿生活质量及影响因素的研究[J].中华护理杂志,2015,50(4):423-427.DOI:10.3761/j.issn.0254-1769.2015.04.009.ZHANG Y,SHENG Y.The level and influence factors of the health-related quality of life in children with bone tumors[J].Chin J Nurs,2015,50(4):423-427.DOI:10.3761/j.issn.0254-1769.2015.04.009.