慢性病青少年及照护者双视角下成长过渡期准备的纵向研究

doi:10.3761/j.issn.0254-1769.2022.16.008

摘要/Abstract

摘要： 目的探究慢性病青少年及其照护者双视角下，成长过渡期准备水平的变化过程及对彼此生活质量的影响，明确家庭照护适应度在此过程中的调控作用。方法采用前瞻性研究设计，便利选取2019年3月—9月在上海市2所儿童专科医院的肾病、风湿病和内分泌病房住院的201例慢性病青少年及其照护者作为调查对象。在住院期间、出院后1年和出院后2年，采用一般资料调查问卷、中文版家庭管理测量量表、中文版成长过渡期准备问卷、中文版儿童生存质量测定量表及中文版儿童生命质量家庭影响模块进行调查。采用纵向主-客体互依模型，分析成长过渡期准备水平对慢性病青少年及其照护者生活质量的影响。结果重复测量方差分析结果显示，慢性病青少年及其照护者视角下的成长过渡期准备水平逐年增高（均P<0.001）。相关分析结果显示，出院后2年慢性病青少年及其照护者视角下的成长过渡期准备水平与彼此生活质量呈正相关（P<0.001）。主-客体互依模型分析结果显示，慢性病青少年视角下的成长过渡期准备水平对其生活质量有正向主体效应（P<0.05）;照护者视角下的成长过渡期准备水平对其自身和青少年的生活质量有正向主体、客体效应（P<0.05）;家庭照护适应度对青少年及其照护者视角下的成长过渡期准备水平均有正向影响（P<0.05）。结论慢性病青少年及其照护者双视角下的成长过渡期准备水平能正向预测彼此的生活质量。医护人员应在不同阶段提供有针对性的家庭护理，提高慢性病青少年的自我管理能力，进而提升家庭整体生活质量。

关键词: 青少年, 慢性病, 家庭, 过渡, 生活质量, 儿科护理学

Abstract:

Objective To explore the change of transition readiness from perspective of adolescents with chronic diseases and their caregivers，and to identify its long-term effect on their quality of life，and to clarify the regulating role of family management adjustment. Methods A prospective study was conducted among 201 pairs of adolescents with chronic diseases and their caregivers hospitalized in the wards of nephrology，rheumatology，and endocrinology of 2 children’s hospitals in Shanghai from March to September 2019. Data were collected at hospitalization（T1），1 year after discharge（T2） and 2 years after discharge（T3） using a demographic questionnaire，Chinese version of Family Management Measure，Chinese version of Self-Management and Transition to Adulthood with Rx=Treatment Questionnaire，Pediatric Quality of Life Inventory 4.0 and Pediatric Quality of Life Inventory Family Impact Model. The longitudinal actor-partner interdependence model was used to analyze the impact of transition readiness on quality of life. Results The results of ANOVA showed that transition readiness from perspective of adolescents and their caregivers increased year by year（P<0.001）. The results of correlation analysis showed that there was a significant positive correlation between transition readiness and quality of life at T3（P<0.001）. The analysis results of actor-partner interdependence model showed that adolescents’ perspective of transition readiness had a positive actor effect on their own quality of life（P<0.05）;caregivers’ perspective of transition readiness had positive actor and partner effects on their own quality of life and adolescents’ quality of life（P<0.05）;family management adjustment had significant positive impacts on transition readiness. Conclusion In the context of family management，transition readiness could positively predict quality of life of adolescents with chronic diseases and their caregivers. Medical staff should carry out targeted family interventions at different stages，improve self-management level of adolescents，and thus enhance quality of life of the whole family.

Key words: Adolescent, Chronic Disease, Family, Transition, Quality of Life, Pediatric Nursing

巩格言, 马佳莉, 高雯颖, 张莹. 慢性病青少年及照护者双视角下成长过渡期准备的纵向研究[J]. 中华护理杂志, 2022, 57(16): 1969-1975.

GONG Geyan, MA Jiali, GAO Wenying, ZHANG Ying. The influence of family management adjustment and the trajectory of transition readiness in adolescents with chronic diseases and caregivers on their quality of life[J]. Chinese Journal of Nursing, 2022, 57(16): 1969-1975.

图/表 3

表1 调查对象不同时间点家庭照护适应度和成长过渡期准备水平比较（n=201，分，$\bar{x}$±s）

Table 1 Comparison of family management adjustment scores and transition readiness scores at different time points(n=201，scores，$\bar{x}$±s)

表2 调查对象不同时间点成长过渡期准备水平与生活质量的相关性（r值，n=201）

Table 2 Correlation between transition readiness and quality of life at different time points（r value，n=201）

图1 慢性病青少年及其照护者双视角下成长过渡期准备水平和生活质量的主-客体互依模型注：T1为住院时，T2为出院后1年，T3为出院后2年;1）P<0.001，2）P<0.05。

Figure 1 Actor-partner interdependence model of transition readiness and quality of life of adolescents with chronic diseases and caregivers

参考文献 34

[1]	van Staa A, van der Stege HA, Jedeloo S, et al. Readiness to transfer to adult care of adolescents with chronic conditions:exploration of associated factors[J]. J Adolesc Health, 2011, 48(3):295-302.
[2]	Fredericks EM. Transition readiness assessment:the importance of the adolescent perspective[J]. Pediatr Transplant, 2017, 21(3):e12921.
[3]	Uzark K, Afton K, Yu S, et al. Transition readiness in adolescents and young adults with heart disease:can we improve quality of life[J]. J Pediatr, 2019, 212:73-78.
[4]	Raina R, Wang J, Sethi SK, et al. Survey on health care transition services in pediatric nephrology[J]. Clin Exp Nephrol, 2018, 22(1):206-207.
[5]	巩格言, 马佳莉, 周丝丝, 等. 慢性病患儿过渡期准备中医患各方任务及干预的研究进展[J]. 护理学杂志, 2021, 36(3):103-106.
	Gong GY, Ma JL, Zhou SS, et al. Research progress on key tasks and interventions of different stakeholders in transition readiness for children with chronic diseases[J]. J Nurs Sci, 2021, 36(3):103-106.
[6]	Straus EJ. Challenges in measuring healthcare transition readiness:taking stock and looking forward[J]. J Pediatr Nurs, 2019, 46:109-117.
[7]	Madani BM, Al Raddadi R, Al Jaouni S, et al. Quality of life among caregivers of sickle cell disease patients:a cross sectional study[J]. Health Qual Life Outcomes, 2018, 16(1):176.
[8]	Sheng N, Ma JL, Ding WW, et al. Family management affecting transition readiness and quality of life of Chinese children and young people with chronic diseases[J]. J Child Health Care, 2018, 22(3):470-485.
[9]	Wickham RE, Macia KS. Examining cross-level effects in dyadic analysis:a structural equation modeling perspective[J]. Behav Res Methods, 2019, 51(6):2629-2645.
[10]	van der Lee JH, Mokkink LB, Grootenhuis MA, et al. Definitions and measurement of chronic health conditions in childhood:a systematic review[J]. JAMA, 2007, 297(24):2741-2751.
[11]	Maccallum RC, Browne MW, Sugawara HM. Power analysis and determination of sample size for covariance structure modeling[J]. Psychol Methods, 1996, 1(2):130-149.
[12]	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.
	Zhang Y, Wei M. Validity and reliability of the Chinese version of Family Management Measure[J]. Chin J Pract Nurs, 2009, 25(14),19-22.
[13]	Ma J, Yu Q, Ding W, et al. Psychometric properties of the ‘Self-Management and Transition to Adulthood with Rx= Treatment Questionnaire’ in Chinese children and young people with chronic diseases[J]. Int J Nurs Pract, 2021, 27(2):e12880.
[14]	卢奕云, 田琪, 郝元涛, 等. 儿童生存质量测定量表PedsQL4.0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.
	Lu YY, Tian Q, Hao YT, et al. Reliability and validity for Chinese version of Pediatric Quality of Life Inventory PedsQL4.0[J]. J Sun Yat-Sen Univ Med Sci, 2008, 29(3):328-331.
[15]	Chen RQ, Hao YT, Feng LF, et al. The Chinese version of the Pediatric Quality of Life Inventory^TM(PedsQL^TM) Family Impact Module:cross-cultural adaptation and psychometric evaluation[J]. Heal Qual Life Outcomes, 2011, 9(1):1-10.
[16]	Bentler PM. EQS 6 structural equations program manual[M]. Encino, CA: Multivariate Software Inc, 1995.
[17]	马佳莉, 盛楠, 丁文雯, 等. 慢性病患儿过渡期准备对其生活质量的影响[J]. 中国当代儿科杂志, 2018, 20(1):60-66.
	Ma JL, Sheng N, Ding WW, et al. Impact of transition readiness on quality of life in children with chronic diseases[J]. Chin J Contemp Pediatr, 2018, 20(1):60-66.
[18]	Arvanitis M, Hart LC, DeWalt DA, et al. Transition readiness not associated with measures of health in youth with IBD[J]. Inflamm Bowel Dis, 2021, 27(1):49-57.
[19]	Johnson LE, Lee MJ, Turner-Moore T, et al. Systematic review of factors affecting transition readiness skills in patients with inflammatory bowel disease[J]. J Crohns Colitis, 2021, 15(6):1049-1059.
[20]	Uzark K, Yu S, Lowery R, et al. Transition readiness in teens and young adults with congenital heart disease:can we make a difference[J]. J Pediatr, 2020, 221:201-206.
[21]	Gauci J, Bloomfield J, Lawn S, et al. Effectiveness of self-management programmes for adolescents with a chronic illness:a systematic review[J]. J Adv Nurs, 2021, 77(9):3585-3599.
[22]	Saarij rvi M, Wallin L, Moons P, et al. Mechanisms of impact and experiences of a person-centred transition programme for adolescents with CHD:the stepstones project[J]. BMC Health Serv Res, 2021, 21(1):573.
[23]	Shaw KL, Baldwin L, Heath G. A confident parent breeds a confident child understanding the experience and needs of parents whose children will transition from paediatric to adult care[J]. J Child Health Care, 2021, 25(2):305-319.
[24]	Shapiro JM, El-Serag HB, Gandle C, et al. Recommendations for successful transition of adolescents with inflammatory bowel diseases to adult care[J]. Clin Gastroenterol Hepatol, 2020, 18(2):276-289.
[25]	Vergne C, Blin N, Mallet J, et al. Transition to adulthood:an essential period in the follow up of young patients[J]. Bull Cancer, 2021, 108(2):151-158.
[26]	蔡立柏, 刘延锦, 孙箫音, 等. 青少年癫痫患者疾病感受和体验的质性研究[J]. 中华护理杂志, 2021, 56(1):86-91.
	Cai LB, Liu YJ, Sun XY, et al. A qualitative research on perceptions and experience of adolescents with epilepsy[J]. Chin J Nurs, 2021, 56(1):86-91.
[27]	Kim G, Choi EK, Kim HS, et al. Healthcare transition readiness,family support,and self-management competency in Korean emerging adults with type 1 diabetes mellitus[J]. J Pediatr Nurs, 2019, 48:e1-e7.
[28]	Schulman-Green D, Feder SL, Montano AR, et al. Use of the self and family management framework and implications for further development[J]. Nurs Outlook, 2021, 69(6):991-1020.
[29]	Alotaibi E, Alateeq M. Knowledge and practice of parents and guardians about childhood asthma at King Abdulaziz Medical City for National Guard,Riyadh,Saudi Arabia[J]. Risk Manag Healthc Policy, 2018, 11:67-75.
[30]	Gibson-Young L, Turner-Henson A, Gerald LB, et al. The relationships among family management behaviors and asthma morbidity in maternal caregivers of children with asthma[J]. J Fam Nurs, 2014, 20(4):442-461.
[31]	罗曦, 邹萍. 胆道闭锁患儿家长治疗决策困境的质性研究[J]. 中华护理杂志, 2019, 54(11):1630-1633.
	Luo X, Zou P. Medical decision-making difficulties among parents of children with biliary atresia[J]. Chin J Nurs, 2019, 54(11):1630-1633.
[32]	谢红芬, 王桂梅, 胡启梅, 等. 以家庭为中心的协同护理对抑郁症患者照顾者家庭负担及社会支持的影响[J]. 中华护理杂志, 2018, 53(6):662-667.
	Xie HF, Wang GM, Hu QM, et al. The effects of family-centered collaborative care on family burden and social support for caregivers of patients with depression[J]. Chin J Nurs, 2018, 53(6):662-667.
[33]	Cheng J, Wang HF, Zhang XZ, et al. The factors of family management affecting asthma control status in school-age chil-dren with asthma in China[J]. J Asthma, 2022, 59(5):1041-1050.
[34]	王英杰, 李杨. 以家庭为中心的教育干预在儿科护理中的应用现状[J]. 中华护理杂志, 2016, 51(1):98-102.
	Wang YJ, Li Y. The application of family-centered educational intervention in pediatric nursing[J]. Chin J Nurs, 2016, 51(1):98-102.