目的 探讨主要照顾者心理状况对脑瘫儿童家庭疾病管理状况的影响。方法 2013年8月至2014年8月,采用一般情况调查表、家庭管理测量量表、心理弹性量表、焦虑自评量表、抑郁自评量表、幸福指数量表对222例脑瘫儿童的主要照顾者进行问卷调查。结果 脑瘫儿童家庭管理测量量表中父母疾病管理能力、父母对患儿疾病担心、父母管理困难、父母疾病精力消耗、父母相互支持评分均显著高于中间值(t>8.866, P<0.001),心理弹性量表、焦虑自评量表、抑郁自评量表评分显著低于国内常模(t>5.523, P<0.001),幸福指数为(7.63±2.96)分。回归分析显示,家庭疾病管理各维度的影响因素包括患儿住院次数、家长康复预期、家长心理状态(包括焦虑、心理弹性),以及幸福指数(P<0.05)。结论 脑瘫儿童主要照顾者心理状况及疾病家庭管理整体状况不容乐观,照顾者心理状况影响疾病管理。
Objective To explore the effects of psychology of caregivers of children with cerebral palsy on family management.Methods From August, 2013 to August, 2014, the main caregivers of 222 children with cerebral palsy were investigated with questionnaires of demography, Connor-Davidson Resilience Scale (CD-RISC), Index of Well-being, Self-rating Anxiety Scale (SAS), Self-rating Depression Scale (SDS) and Family Management Measure (FaMM).Results The scores of Condition Management Ability, View of Condition Impact, Condition Management Effort, Family Life Difficulty and Parental Mutuality of FaMM were higher than the median (t>8.866, P<0.001). The scores of CD-RISC, SAS and SDS were less than the norms of Chinese (t>5.523, P<0.001). Index of Well-being was (7.63±2.96). The factors related with the dimensions of family management included the time of hospitalization of children, the expectation of rehabilitation, the levels of anxiety and psychological resilience, and the index of well-being of the parents (P<0.05).Conclusion The psychology of caregivers of children with cerebral palsy and family management are dissatisfactory, and the psychology may influence family management.
[1] 中国康复医学会儿童康复专业委员会,中国残疾人康复协会小儿脑性瘫痪康复专业委员会,《中国脑性瘫痪康复指南》编委会. 中国脑性瘫痪康复指南(2015)：第一部分[J]. 中国康复医学杂志, 2015, 30(7): 747-754.
[2] 胡亚美,姜载芳. 诸福棠实用儿科学[M]. 8版. 北京:人民卫生出版社, 2015.
[3] Rosenbaum P. Family and quality of life: key elements in intervention in children with cerebral palsy [J]. Dev Med Child Neurol, 2011, 53(4): 68-70.
[4] Lowes L, Clark TS, Noritz G. Factors associated with caregiver experience in families with a child with cerebral palsy [J]. J Pediatr Rehabil Med, 2016, 9(1): 65-72.
[5] 郭岚敏,肖凤鸣,姜志梅,等. 脑性瘫痪儿童父母心理健康状况与其人格特征的关系[J]. 中国康复理论与实践, 2014, 20(11): 1068-1070.
[6] 周彩峰,周志南,谢俊房,等. 脑性瘫痪患儿父母积极体验与家庭亲密度适应性调查及相关性研究[J]. 中国全科医学, 2015, 18(8): 924-927.
[7] 中华医学会儿科学分会神经学组. 小儿脑性瘫痪的定义、诊断条件及分型[J]. 中华儿科杂志, 2005, 43(4): 262.
[8] 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(14): 19-22.
[9] Yu XN, Zhang JX. Factor analysis and psychometric evaluation of the Connor Davidson resilience scale (CD-RISC) with Chinese people [J]. Soc Behav Personality, 2007, 35(1): 19-30.
[10] 汪向东,王希林,马弘. 心理卫生评定量表手册[M]. 增订版. 北京:中国心理卫生杂志社, 1999.
[11] 范俊强,周广涛. 95后大学生心理弹性现状及保护性因素研究[J]. 中国卫生产业, 2016(7): 27-29.
[12] 叶增杰,管惠捷,全小明,等. 肿瘤患儿父母心理弹性及其影响因素的研究[J]. 中国实用护理杂志, 2014, 30(24): 55-58.
[13] 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(3C): 1016-1019.
[14] Kim DH, Im YJ. The influence of family management style on psychosocial problems of childhood cancer survivors in Korea [J]. Eur J Oncol Nurs, 2015, 19(2): 107-112.
[15] Kim I, Ekas VN, Hock R. Associations between child behavior problems, family management, and depressive sympotoms for mothers of children with autism spectrum disorder [J]. Res Autism Spectr Disord, 2016, 26: 80-90.
[16] Ichikawa CR, Bousso RS, Misko MD, et al. Cultural adaptation of the Family Management Measure among families of children and adolescents with chronic diseases [J]. Rev Lat Am Enfermagem, 2014, 22(1): 115-122.
[17] 焦燕琴,万卫红,唐浪娟. 脑瘫患儿家庭主要照顾者负担及影响因素分析[J]. 护理管理杂志, 2014, 14(12): 856-858.
[18] 武霞,杨茜茜,陈悦. 脑瘫康复患儿主要照顾者的照顾体验[J]. 泰山医学院学报, 2016, 37(1): 36-39.
[19] 李晓捷. 中国脑性瘫痪康复的现状、挑战及发展策略[J]. 中国康复医学杂志, 2016, 31(1): 6-8.
[20] 李红英,张跃,汤健,等. 脑瘫患儿家长焦虑和抑郁状况及其影响因素的研究[J]. 中华物理医学与康复杂志, 2014, 36(3): 174-175.
[21] Majnemer A, Shevell M, Law M. Indicators of distress in families of children with cerebral palsy [J]. Disabil Rehabil, 2012, 34(14): 1202-1207.
[22] Cuijpers P, Weitz E, Karyotaki E, et al. The effects of psychological treatment of maternal depression on children and parental functioning: a meta-analysis [J]. Eur Child Adolesc Psychiatry, 2015, 24(2): 237-245.
[23] 陈彬. 脑瘫患儿父母不良情绪对患儿康复的影响[J]. 中国实用神经疾病杂志, 2012, 15(8): 63-64.
[24] Rosenberg AR, Wolfe J, Bradford MC, et al. Resilience and psychosocial outcomes in parents of children with cancer [J]. Pediatr Blood Cancer, 2014, 61(3): 552-557.
[25] 付芳,王英,顾秀萍. 慢性病患儿家属心理弹性与家庭功能的相关性研究[J]. 护理研究, 2013, 27(7): 2073-2075.
[26] 周迎春. 哮喘患儿母亲主管幸福感与焦虑抑郁状况分析[J]. 中国儿童保健杂志, 2010, 18(1): 66-67.
[27] Shenaar-Golan V. The subjective well-being of parents of children with developmental disabilities: the role of hope as predictor and fosterer of well-being [J]. J Soc Work Disabil Rehabil, 2016, 15(2): 77-95.
[28] 杨剑,严丽萍,王林,等. 家庭环境因素对儿童青少年幸福感的影响[J]. 中国健康教育, 2016, 32(3): 221-225.
[29] Trzesniewski KH, Donnellan MB, Moffitt TE, et al. Low self-esteem during adolescence predicts poor health, criminal behavior, and limited economic prospects during adulthood [J]. Dev Psychol, 2006, 42(2): 381-390.
[30] 呙程昕. 主观幸福感与心理健康关系的研究综述[J]. 中华少年, 2016(19): 297-298.
[31] 王涛,谭景予,关风光. 2~3岁脑瘫患儿行为问题影响因素及差异性研究[J]. 中国全科医学, 2015, 18(4): 458-462.
[32] Micklewright JL, King TZ, O'Toole K, et al. Parental distress, parenting practices, and child adaptive outcomes following traumatic brain injury [J]. J Int Neuropsychol Soc, 2012, 18(2): 343-350.
[33] Anne AB, Elyse R, Justin P, et al. Parent's psychological flexibility: associations with parenting and child psychosocial well-being [J]. J Context Behav Sci, 2016, 5(2): 111-120.
[34] 刘合建,邱卓英,周文萍,等. ICF-CY理论与方法在脑性瘫痪康复中的应用[J]. 中国康复理论与实践, 2014, 20(1): 6-10.
