6岁以下发育障碍患儿祖父母创伤后成长体验的质性研究

doi:10.3761/j.issn.0254-1769.2022.18.008

摘要/Abstract

摘要：

目的挖掘6岁以下发育障碍患儿祖父母创伤后成长的体验,为制订干预方案、促进其心理成长提供依据。方法采用目的抽样法,选取2021年10月—2022年1月在重庆市某三级甲等医院接受康复治疗的12名发育障碍患儿祖父母作为研究对象,采用半结构式访谈和面对面非语言行为观察法收集资料,借助GooSeeker软件整理资料,并采用Colaizzi 7步分析法对资料进行分析。结果共提炼5个主题：①积极心理衍生,包括感知患儿进步、憧憬美好未来、正向应对压力;②新的人生感悟,包括坦然接纳现实、转移生活重心、更加珍视健康;③个人力量增强,包括心理韧性提升、自我效能感增强、乐观与希望;④支持系统增强,包括情感支持和社会支持增强;⑤人际关系和谐,包括利他行为、与他人关系改善。结论 6岁以下发育障碍患儿祖父母有多方面的创伤后成长体验,医护人员可通过团体心理辅导、组建心理支持小组、加强疾病宣教等方式帮助其获得更多的社会支持,使其有效应对压力,从而促进创伤后成长。

关键词: 发育障碍, 祖父母, 创伤后成长, 质性研究, 儿科护理学

Abstract:

Objective To explore the posttraumatic growth experience of grandparents of children with developmental disabilities under 6 years old,so as to provide a basis for formulating intervention programs to promote their psychological growth. Methods The purposive sampling method was adopted to select 12 grandparents of children with developmental disabilities who received the rehabilitation treatment in a tertiary A hospital in Chongqing from October 2021 to January 2022 as research subjects. Data were collected by semi-structured interviews and face-to-face nonverbal behavior observation method,and data were sorted out with the help of GooSeeker software. The data were analyzed by Colaizzi 7-step analysis method. Results 5 themes were extracted.①The positive psychological derivations：perceived progress of children,looking forward to a better future,positive coping styles.②New life perception：accepting reality calmly,shifting focus of life,valuing health more. ③The enhancement of personal strength：the enhancement of resilience,the enhancement of self-efficacy,optimism and prospect. ④The enhancement of support system：the enhancement of emotional support,the enhancement of social support.⑤Interpersonal harmony：altruistic behavior,improvements in relationships with others. Conclusion Grandparents of children with developmental disabilities under 6 years old have various experiences of posttraumatic growth. Medical staff can help them get more social support through group psychological counseling,setting up psychological support groups and strengthening disease publicity,so as to help them effectively cope with stress and promote posttraumatic growth.

Key words: Developmental Disabilities, Grandparents, Posttraumatic Growth, Qualitative Research, Pediatric Nursing

陆晚, 李文藻, 许辰, 张巧, 李敏. 6岁以下发育障碍患儿祖父母创伤后成长体验的质性研究[J]. 中华护理杂志, 2022, 57(18): 2225-2231.

LU Wan, LI Wenzao, XU Chen, ZHANG Qiao, LI Min. Posttraumatic growth experience of grandparents of children with developmental disabilities under 6 years old：a qualitative study[J]. Chinese Journal of Nursing, 2022, 57(18): 2225-2231.

图/表 1

参考文献 35

[1]	张雁, 吴卫红, 王献娜, 等. 社交沟通康复系统在行为发育障碍儿童中的应用研究[J]. 中国康复医学杂志, 2017, 32(8):946-948.
	Zhang Y, Wu WH, Wang XN, et al. Application of social communication rehabilitation system in children with behavioral development disorder[J]. Chin J Rehabi Med, 2017, 32(8):946-948.
[2]	邹小兵, 李咏梅. 儿童发育迟缓及发育障碍的早期干预和管理[J]. 中国实用儿科杂志, 2016, 31(10):756-760.
	Zou XB, Li YM. Early intervention and management of children with developmental delay and developmental disorders[J]. Chin J Pract Pediatr, 2016, 31(10):756-760.
[3]	Global Research on Developmental Disabilities Collaborators. Developmental disabilities among children younger than 5 years in 195 countries and territories,1990-2016:a systematic analysis for the global burden of disease study 2016[J]. Lancet Glob Health, 2018, 6(10):e1100-e1121. DOI URL
[4]	Larson-Nath C, Goday P. Malnutrition in children with chronic disease[J]. Nutr Clin Pract, 2019, 34(3):349-358. DOI PMID
[5]	Hilger-Kolb J, Schneider S, Herr R, et al. Associations between contextual and compositional characteristics of early childcare facilities with health,health behaviours and well-being among young children aged 6 years:protocol for a scoping review[J]. BMJ Open, 2020, 10(9):e037038. DOI URL
[6]	Alzrayer NM, Muharib R, Wood C. Effects of a behavior intervention package on augmented and vocal mands by children with developmental disabilities[J]. J Dev Phys Disabil, 2020, 32(1):57-74. DOI URL
[7]	Ko PC, Hank K. Grandparents caring for grandchildren in China and Korea:findings from CHARLS and KLoSA[J]. J Gerontol B Psychol Sci Soc Sci, 2013, 69(4):646-651. DOI URL
[8]	Hastings RP. Grandparents of children with disabilities:a review[J]. Intl J Disabil Dev Educ, 1997, 44(4):329-340. DOI URL
[9]	Hornby G, Ashworth T. Grandparents’ support for families who have children with disabilities[J]. J Child Fam Stud, 1994, 3(4):403-412. DOI URL
[10]	D’Astous V, Wright SD, Wright CA, et al. Grandparents of grandchildren with autism spectrum disorders:influences on engagement[J]. J Intergener Relatsh, 2013, 11(2):134-147.
[11]	Hillman JL, Wentzel MC, Anderson CM. Grandparents’ experience of autism spectrum disorder:identifying primary themes and needs[J]. J Autism Dev Disord, 2017, 47(10):2957-2968. DOI URL
[12]	Tedeschi RG, Calhoun LG. Posttraumatic growth:conceptual foun-dations and empirical evidence[J]. Psychol Inq, 2004, 15(1):1-18. DOI URL
[13]	Sánchez Gómez MC, Martín-Sevillano R, Martín-Cilleros MV, et al. Nurturing grandchildren with down syndrome:a qualitative study on grandparents’ needs using digital tools[J]. Front Psychol, 2021, 12:661205. DOI URL
[14]	Breslau N. The epidemiology of trauma,PTSD,and other posttrauma disorders[J]. Trauma Violence Abuse, 2009, 10(3):198-210. DOI URL
[15]	刘小花, 黄连涛, 刘耐荣. 创伤后成长水平显著肺癌患者成长体验的质性研究[J]. 当代护士(中旬刊), 2020, 27(4):1-4.
	Liu XH, Huang LT, Liu NR. Post-traumatic growth in lung cancer patients with higher level:a qualitative study[J]. Today Nurse, 2020, 27(4):1-4.
[16]	石川, 钱英, 李雪, 等. 新冠肺炎流行期心理自助方法详解[J]. 中国心理卫生杂志, 2020, 34(3):286-295.
	Shi C, Qian Y, Li X, et al. Psychological self-help practice technique during the COVID-19 epidemic[J]. Chin Ment Heal J, 2020, 34(3):286-295.
[17]	张佳媛, 周郁秋, 张全志, 等. 正念减压疗法对乳腺癌患者知觉压力及焦虑抑郁水平的影响[J]. 中华护理杂志, 2015, 50(2):189-193.
	Zhang JY, Zhou YQ, Zhang QZ, et al. The effect of mindfulness-based stress reduction on perceived stress,anxiety and depression in breast cancer patients[J]. Chin J Nurs, 2015, 50(2):189-193.
[18]	季梦婷, 杨艳. 描述性质性研究方法学的综述[J]. 解放军护理杂志, 2018, 35(11):32-35.
	Ji MT, Yang Y. A review of descriptive property research methodologies[J]. Nurs J Chin PLA, 2018, 35(11):32-35.
[19]	Zoellner T, Maercker A. Posttraumatic growth in clinical psychology:a critical review and introduction of a two component model[J]. Clin Psychol Rev, 2006, 26(5):626-653. PMID
[20]	Hillman JL, Anderson CM. It’s a battle and a blessing:the experience and needs of custodial grandparents of children with autism spectrum disorder[J]. J Autism Dev Disord, 2019, 49(1):260-269. DOI URL
[21]	康玉玲. 情绪ABC理论干预对急性心肌梗死患者心理状态及应激反应的影响[J]. 中国健康心理学杂志, 2021, 29(6):843-847.
	Kang YL. Effect of emotional ABC theory on mental state and stress response in patients with acute myocardial infarction[J]. China J Heal Psychol, 2021, 29(6):843-847.
[22]	Shepherd D, Landon J, Taylor S, et al. Coping and care-related stress in parents of a child with autism spectrum disorder[J]. Anxiety Stress Coping, 2018, 31(3):277-290. DOI PMID
[23]	Perry A. A model of stress in families of children with developmental disabilities:clinical and research applications[J]. J Dev Disabil, 2004, 11:1-16.
[24]	Zhang W, Yan TT, Barriball KL, et al. Post-traumatic growth in mothers of children with autism:a phenomenological study[J]. Autism, 2015, 19(1):29-37. DOI PMID
[25]	杨娇星, 石绍南, 申倩倩, 等. 脑瘫患儿父母创伤后成长体验的质性研究[J]. 全科护理, 2020, 18(4):486-489.
	Yang JX, Shi SN, Shen QQ, et al. Qualitative study on parents’ experience of posttraumatic growth in children with cerebral palsy[J]. Chin Gen Pract Nurs, 2020, 18(4):486-489.
[26]	Shakespeare-Finch J, Copping A. A grounded theory approach to understanding cultural differences in posttraumatic growth[J]. J Loss Trauma, 2006, 11(5):355-371. DOI URL
[27]	柯丹丹, 罗洁, 洪轶颖, 等. 膀胱全切术后行腹壁造口患者照顾者创伤后成长体验的质性研究[J]. 中华护理杂志, 2022, 57(3):294-300.
	Ke DD, Luo J, Hong YY, et al. A qualitative research on post-traumatic growth experience of family members in patients with abdominal wall stoma after radical cystectomy[J]. Chin J Nurs, 2022, 57(3):294-300.
[28]	Qin XQ, Feng YS, Qu FL, et al. Posttraumatic growth among parents of children with autism spectrum disorder in China and its relationship to family function and mental resilience:a cross-sectional study[J]. J Pediatr Nurs, 2021, 57:e59-e67. DOI URL
[29]	Lu W, Xu C, Hu XK, et al. The relationship between resilience and posttraumatic growth among the primary caregivers of children with developmental disabilities:the mediating role of positive coping style and self-efficacy[J]. Front Psychol, 2021, 12:765530. DOI URL
[30]	Ekas NV, Whitman TL. Adaptation to daily stress among mothers of children with an autism spectrum disorder:the role of daily positive affect[J]. J Autism Dev Disord, 2011, 41(9):1202-1213. DOI URL
[31]	Abshire M, Russell SD, Davidson PM, et al. Social support moderates the relationship between perceived stress and quality of life in patients with a left ventricular assist device[J]. J Cardiovasc Nurs, 2018, 33(5):E1-E9.
[32]	李丽雅, 姜男, 赵岳. 孤独症儿童父母创伤后成长状况及其影响因素分析[J]. 中华护理杂志, 2015, 50(3):317-321.
	Li LY, Jiang N, Zhao Y. The current status and impact factors of posttraumatic growth in parents of children with autism[J]. Chin J Nurs, 2015, 50(3):317-321.
[33]	张嘉欣, 郑乔木, 周菁鑫, 等. 同伴支持在早产儿父母中的研究进展[J]. 中华护理杂志, 2022, 57(2):245-251.
	Zhang JX, Zheng QM, Zhou JX, et al. Research progress on peer support for parents of premature infants[J]. Chin J Nurs, 2022, 57(2):245-251.
[34]	Tedeschi RG, Calhoun LG. The posttraumatic growth inventory:measuring the positive legacy of trauma[J]. J Trauma Stress, 1996, 9(3):455-471. PMID
[35]	Pat-Horenczyk R, Perry S, Hamama-Raz Y, et al. Posttraumatic growth in breast cancer survivors:constructive and illusory aspects[J]. J Trauma Stress, 2015, 28(3):214-222. DOI PMID