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Public Health

Anxiety, Depression, Quality of Life, and Family Support Among Family Caregivers of Children with Disabilities

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Pages 5063-5075 | Received 22 Aug 2023, Accepted 20 Oct 2023, Published online: 02 Nov 2023

References

  • World Health Organization. World Report on Disability; 2011.
  • Smith M, Blamires J. Mothers’ experience of having a child with cerebral palsy. A systematic review. J Pediatr Nurs. 2022;64:64–73. doi:10.1016/j.pedn.2022.01.014
  • Slaná M, Molnárová Letovancová K, Dobríková P, Hromková M. Research into the needs of families who have children with Down syndrome (in the Slovak framework). Kontakt. 2020;22(1):60–67. doi:10.32725/kont.2020.005
  • Bian C, Peng F, Guo H, Chen K. Investigation on quality of life and economic burden of children with cerebral palsy in Changzhou. J Healthc Eng. 2022;2022:1–9. doi:10.1155/2022/1519689
  • Rayan A, Ahmad M. Psychological distress in Jordanian parents of children with autism spectrum disorder: the role of positive reappraisal coping. Arch Psychiat Nurs. 2017;31(1):38–42. doi:10.1016/j.apnu.2016.07.017
  • Liao XL, Lei XY, Li YM. Stigma among parents of children with autism: a literature review. Asian J Psychiatr. 2019;45:88–94. doi:10.1016/j.ajp.2019.09.007
  • Donald B, Bailey J, Simeonsson RJ. Assessing needs of families with handicapped infants. J Spec Educ. 1988;22(1):117–127. doi:10.1177/002246698802200113
  • Folkman S, Lazarus RS, Dunkel-Schetter C, DeLongis A, Gruenn RJ. Dynamics of a stressful encounter: cognitive appraisal, coping, and encounter outcomes. J Pers Soc Psychol. 1986;50(5):992–1003. doi:10.1037/0022-3514.50.5.992
  • Norizan A, Shamsuddin K. Predictors of parenting stress among Malaysian mothers of children with Down syndrome. JIDR. 2010;54(11):992–1003. doi:10.1111/j.1365-2788.2010.01324.x
  • Scherer N, Verhey I, Kuper H. Depression and anxiety in parents of children with intellectual and developmental disabilities: a systematic review and meta-analysis. PLoS One. 2019;(14):e219888. doi:10.1371/journal.pone.0219888
  • Guillamón N, Nieto R, Pousada M, et al. Quality of life and mental health among parents of children with cerebral palsy: the influence of self-efficacy and coping strategies. J Clin Nurs. 2013;22(11–12):1579–1590. doi:10.1111/jocn.12124
  • Wang P, Michaels CA. Chinese families of children with severe disabilities: family needs and available support. Res Pract Pers Sev D. 2009;34:21–32. doi:10.2511/rpsd.34.2.21
  • Gemikoz M, Ozgen M, Mutlu F. Anxiety, depression and quality of life levels of mothers with children with cerebral palsy. Curr Pediatr Rep. 2020;18:114–124.
  • Zeng S, Zhao H, Hu X, Lee JD, Stone-MacDonald AK, Price ZW. Are we on the same page: a dyadic analysis of parental stress, support, and family quality of life on raising children with autism spectrum disorders. J Dev Phys Disabil. 2021;33(4):599–618. doi:10.1007/s10882-020-09761-x
  • Dunst CJ, Jenkins V, Trivette CM. Family support scale: reliability and validity. J Individual Fam Comm Wellness. 1984;1:45–52.
  • Carlson JM, Miller PA. Family burden, child disability, and the adjustment of mothers caring for children with epilepsy: role of social support and coping. Epilepsy Behav. 2017;68:168–173. doi:10.1016/j.yebeh.2017.01.013
  • Kyzar KB, Turnbull AP, Summers JA, Gómez VA. The relationship of family support to family outcomes: a synthesis of key findings from research on severe disability. Res Pract Pers Sev D. 2012;37:31–44. doi:10.2511/027494812800903247
  • Zeng S, Hu X, Zhao H, Stone-MacDonald AK. Examining the relationships of parental stress, family support and family quality of life: a structural equation modeling approach. Res Dev Disabil. 2020;96:103523. doi:10.1016/j.ridd.2019.103523
  • Hank K, Buber I. Grandparents caring for their grandchildren findings from the 2004 Survey of Health, Ageing, and Retirement in Europe. J Fam Issues. 2009;30(1):53–73. doi:10.1177/0192513X08322627
  • Li XW, Liu QQ. Parent-grandparent coparenting relationship, marital conflict and parent-child relationship in Chinese parent-grandparent coparenting families. Child Youth Serv Rev. 2020;109. doi:10.1016/j.childyouth.2019.104733
  • Zakirova Engstrand R, Roll-Pettersson L, Westling Allodi M, Hirvikoski T. Needs of grandparents of preschool-aged children with ASD in Sweden. J Autism Dev Disord. 2020;50(6):1941–1957. doi:10.1007/s10803-019-03946-w
  • Margetts JK, Le Couteur A, Croom S. Families in a state of flux: the experience of grandparents in autism spectrum disorder. Child Care Health Dev. 2006;32(5):565–574. doi:10.1111/j.1365-2214.2006.00671.x
  • Glasberg BA, Harris SL. Grandparents and parents assess the development of their child with autism. Child Fam Behav Ther. 1997;19(2):17–27. doi:10.1300/J019v19n02_02
  • D’Astous V, Wright SD, Wright CA, Diener ML. Grandparents of grandchildren with autism spectrum disorders: influences on engagement. J Intergener Relatsh. 2013;11:134–147. doi:10.1080/15350770.2013.782744
  • Spitzer RL, Kroenke K, Williams JBW, Loewe B. A brief measure for assessing generalized anxiety disorder - The GAD-7. Arch Intern Med. 2006;166(10):1092–1097. doi:10.1001/archinte.166.10.1092
  • He XY, Li CB, Qian J, Cui HS, Wu WY. Reliability and validity of a generalized anxiety disorder scale in general hospital outpatients. Shanghai Arch Psychiatry. 2010;22:200–203.
  • Kroenke K, Spitzer RL, Williams JBW, Loewe B. The PHQ-9: validity of a brief depression severity measure. J Gen Intern Med. 2001;16(9):606–613. doi:10.1046/j.1525-1497.2001.016009606.x
  • Wang WZ, Bian Q, Zhao Y, et al. Reliability and validity of the Chinese version of the Patient Health Questionnaire (PHQ-9) in the general population. Gen Hosp Psychiat. 2014;36(5):539–544. doi:10.1016/j.genhosppsych.2014.05.021
  • Ware JE, Kosinski M, Keller SD. A 12-item short-form health survey - Construction of scales and preliminary tests of reliability and validity. Med Care. 1996;34(3):220–233. doi:10.1097/00005650-199603000-00003
  • Lam C, Tse E, Gandek B. Is the standard SF-12 Health Survey valid and equivalent for a Chinese population? Qual Life Res. 2005;14(2):539–547. doi:10.1007/s11136-004-0704-3
  • Burton-Smith R, McVilly KR, Yazbeck M, Parmenter TR, Tsutsui T. Service and support needs of Australian carers supporting a family member with disability at home. J Intellect Dev Dis. 2009;34(3):239–247. doi:10.1080/13668250903103668
  • Colvin MK, Poysky J, Kinnett K, et al. Psychosocial management of the patient with Duchenne Muscular Dystrophy. Pediatrics. 2018;142(Supplement_2):S99–S109. doi:10.1542/peds.2018-0333L
  • Chiu C, Turnbull AP, Summers JA. What families need: validation of the family needs assessment for Taiwanese families of children with intellectual disability and developmental delay. Res Pract Pers Sev D. 2013;38:247–258. doi:10.1177/154079691303800404
  • The State Council, the People’s Republic of China. Opinions on Establishing a Rehabilitation Assistance System for Children with Disabilities. Vol. 2022; 2018.
  • Qi CY, Wang Y. Why is rehabilitation assistance policy for children with disabilities deviated in supply-demand? A case study in mainland China. Front Public Health. 2021;9. doi:10.3389/fpubh.2021.666333.
  • CDPF. China’s Rehabilitation Assistance Services Cover More Children with Disabilities. Vol. 2022; 2021.
  • Xia C, Sun M, Li X, et al. Health-related quality of life and related factors among primary caregivers of children with disabilities in Shanghai, China: a cross-sectional study. IJERPH. 2020;17(24):9299. doi:10.3390/ijerph17249299
  • Lowe B, Decker O, Muller S, et al. Validation and standardization of the Generalized Anxiety Disorder Screener (GAD-7) in the general population. Med Care. 2008;46(3):266–274. doi:10.1097/MLR.0b013e318160d093
  • Kocalevent R, Hinz A, Brähler E. Standardization of the depression screener Patient Health Questionnaire (PHQ-9) in the general population. Gen Hosp Psychiat. 2013;35(5):551–555. doi:10.1016/j.genhosppsych.2013.04.006
  • Fatima N, Chinnakali P, Rajaa S, Menon V, Mondal N, Chandrasekaran V. Prevalence of depression and anxiety among mothers of children with neuro-developmental disorders at a tertiary care centre, Puducherry. Clin Epidemiol Glob Health. 2021;11:100792. doi:10.1016/j.cegh.2021.100792
  • Kuhlthau K, Kahn R, Hill KS, Gnanasekaran S, Ettner SL. The Well-being of parental caregivers of children with activity limitations. Matern Child Hlth J. 2010;14(2):155–163. doi:10.1007/s10995-008-0434-1
  • Wu J, Zhang J, Hong Y. Quality of life of primary caregivers of children with cerebral palsy: a comparison between mother and grandmother caregivers in Anhui province of China. Child Care Health Dev. 2017;43(5):718–724. doi:10.1111/cch.12464
  • Hyer LC, Carpenter AM, Saraswat P, Davids JR, Westberry DE. Outcomes of patellar tendon imbrication with distal femoral extension osteotomy for treatment of crouch gait. J Pediatr Orthop. 2021;41(5):E356–E366. doi:10.1097/BPO.0000000000001793
  • DiFazio RL, Vessey JA, Miller PE, Snyder BD, Shore BJ. Health-related quality of life and caregiver burden after Hip reconstruction and spinal fusion in children with spastic cerebral palsy. Dev Med Child Neurol. 2022;64(1):80–87. doi:10.1111/dmcn.14994
  • De Clercq LE, Prinzie P, Swerts C, Ortibus E, De Pauw S. “Tell me about your child, the relationship with your child and your parental experiences”: a qualitative study of spontaneous speech samples among parents raising a child with and without autism spectrum disorder, cerebral palsy or Down syndrome. J Dev Phys Disabil. 2022;34(2):295–329. doi:10.1007/s10882-021-09800-1
  • Toledano-Toledano F, Moral De La Rubia J. Factors associated with anxiety in family caregivers of children with chronic diseases. Biopsychosoc Med. 2018;12. doi: 10.1186/s13030-018-0139-7
  • Cate IMP, Hastings RP, Johnson H, Titus S. Grandparent support for mothers of children with and without physical disabilities. Fam Soc. 2007;88(1):141–146. doi:10.1606/1044-3894.3601
  • Chen J, Bao J. Rethinking time and lifestyle migration: multiple temporalities, identity formation, and post-migration life of Chinese Houniao. Geogr J. 2020;186(2):213–223. doi:10.1111/geoj.12339
  • Wang Y, Qi CY, Zhu Y. Poverty alleviation for people with disabilities in China: policy, practice, exclusionary effects, and ways forward. Disabil Soc. 2022;37(6):1060–1065. doi:10.1080/09687599.2022.2065464
  • Tseng M, Chen K, Shieh J, Lu L, Huang C, Simeonsson RJ. Child characteristics, caregiver characteristics, and environmental factors affecting the quality of life of caregivers of children with cerebral palsy. Disabil Rehabil. 2016;38(24):2374–2382. doi:10.3109/09638288.2015.1129451
  • Rizk S, Pizur-Bamekow K, Darragh AR. Leisure and social participation and health-related quality of life in caregivers of children with autism. Otjr-Occup Part Heal. 2011;31:164–171. doi:10.3928/15394492-20110415-01
  • Isa SNI, Ishak I, Ab Rahman A, et al. Health and quality of life among the caregivers of children with disabilities: a review of literature. Asian J Psychiatr. 2016;23:71–77. doi:10.1016/j.ajp.2016.07.007