Depression, Anxiety, and Caregiver Burden Among Adult Caregivers of Pediatric Patients with Neurodevelopmental Disorders: A Descriptive Cross-Sectional Study

Melissa Paulita  V. Mariano,; Jacqueline  D. Bernabe,

Depression, Anxiety, and Caregiver Burden Among Adult Caregivers of Pediatric Patients with Neurodevelopmental Disorders: A Descriptive Cross-Sectional Study

Jacqueline D. Bernabe | Melissa Paulita V. Mariano

Abstract:

Introduction The increasing prevalence of neurodevelopmental disorders in children produces a major impact in the lives of their families. The caregivers of these children have demanding experiences which may lead to development of depression and/or anxiety. This study sought to determine the prevalence of depression and anxiety among caregivers of pediatric patients with neurodevelopmental disorders seen at the UERMMMCI Pediatrics Outpatient Department. It likewise sought to examine factors associated with depression and anxiety. Methods This cross-sectional study was conducted at the University of the East Ramon Magsaysay Memorial Medical Center, Inc. Pediatrics Outpatient Department from October 2017 to March 2018 involving caregivers of children with neurodevelopmental anomalies. The Patient Health Questionnaire-9, Generalized Anxiety Disorder-7, the Filipino version of the Zarit Burden Interview (ZBI), Brief Multidimensional Measure of Religiousness and Spirituality (BMMRS) Scale, and Primary Caregivers Practices Report were administered to caregivers who met the study criteria and gave their consent. Associations between variables were determined using chi-square analysis and subgroup analysis. Results More than a third of participants (36.0%) had at least mild anxiety, 29.5% had at least mild depression, and almost half had mild to moderate levels of caregiver burden. There was a signifcant association between the severity of anxiety and the diagnosis of the child (x2 = 23.24, p = 0.006), severity of depressive symptoms (x2 = 93.03, p < 0.001), and level of caregiver burden (x2 = 28.99, p < 0.001). There was a signifcant association between the severity of depressive symptoms and the diagnosis of the child (x2 = 35.34, p < 0.001) and level of caregiver burden (x2 = 38.12, p < 0.001). The level of caregiver burden was associated with the presence and severity of anxiety (x2 = 28.99, p < 0.001) and depressive symptoms (x2 = 38.12, p < 0.001). Conclusion There were signifcant associations between anxiety, depression, and caregiver burden among caregivers of pediatric patients with neurodevelopmental illnesses. Anxiety and depression scores were found to be correlated with the specifc diagnosis of the child, while caregiver burden was signifcantly associated with the duration of the child’s illness.

References:

1. Centers for Disease Control and Prevention. Developmental Disabilities 2004. Retrieved Sep 12, 2017 from http://www.cdc.gov/ncbddd/dd

2. European Union Technical Working Group on Priority Disease, Subgroup Neurodevelopment Disorders. Draft baseline report on neurodevelopmental disorders in the framework of the European Environment and Health Strategy. 2003.

3. America’s Children and the Environment (3rd Edition). (2015). Neurodevelopmental Disorders. Retrieved Sep 15, 2017, from https://www.epa.gov/sites/production/files/2015-10/documents/ace3_neurodevelopmental.pdf

4. National Institute of Neurological Disorders and Stroke. (2013). Cerebral Palsy Hope Through Research. NIH Publication No. 13-159. Retrieved Sep 15, 2017 from https://catalog.ninds.nih.gov/pubstatic//13159/13-159.Pdf

5. Philippine Cerebral Palsy Incorporated. (n.d.). About Cerebral Palsy. Retrieved Sep 23, 2017 from http://philippinecerebralpalsy.org/index.php/about_cerebral

6. The AD/HD Society of the Philippines. About AD/HD.Retrieved Sep 23, 2017 from https://adhdsocphils.org/about-adhd/

7. Centers for Disease Control and Prevention. Autism Spectrum Disorder 2014. Retrieved Sep 12, 2017 from https://www.cdc.gov/ncbddd/autism/data.html

8. Brehaut JC, Kohen DE, Raina P, Walter SD, Russell DJ, Swinton M, O’Donnell M & Rosenbaum P. The health of primary caregivers of children with cerebral palsy: how does it compare with that of other Canadian caregivers? Pediatrics 2004; 114(2): e182–e191.

9. Babalola EO, Adebowale TO, Onifade P, Adelufosi AO. Prevalence and correlates of generalized anxiety disorder and depression among caregivers of children and adolescents with seizure disorders. J Behavioral Health 2014; 3(2): 122-7.

10. Davis NO & Carter AS. Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: associations with child characteristics. J Autism Dev Dis 2008; 38(7): 1278–91. Retrieved from https://doi.org/10.1007/s10803-007-0512-z

11. Al-Farsi O, Al-Farsi Y, Al-Sharbati M, Al-Adawi S. Stress, anxiety, and depression among parents of children with autism spectrum disorder in Oman: a case-control study. Neuropsychiatr Dis Treatm 2016; 12: 1943–51.

12. Lai C, Luciani M, Di Mario C, Galli F, Morelli E, Ginobbi P, Aceto P & Lombardo L. Psychological impairments burden and spirituality in caregivers of terminally ill cancer patients. Eur J Cancer Care 2018; 27(1), 10.1111/ecc.12674. Retrieved from https://doi.org/10.1111/ecc.12674

13. Yeh PM & Bull M. Influences of spiritual well-being and coping on mental health of family caregivers for elders.Res Gerontol Nurs 2009; 2(3): 173–81. Retrieved from https://doi.org/10.3928/19404921-20090421-08

14. Al-Oran H & Al-Sagarat A. Parenting stress of children with autistic disorder. Open Access Library J 2016; 3: 1-10. Retrieved September 20, 2017 from http://dx.doi.org/10.4236/oalib.1102791

15. van Steijn DJ, Oerlemans AM, van Aken MA, Buitelaar JK & Rommelse NN. The reciprocal relationship of ASD, ADHD, depressive symptoms and stress in parents of children with ASD and/or ADHD. J Autism Dev Dis 2014; 44(5): 1064–76.

16. Fairthorne J, Hammond G, Bourke J, Jacoby P & Leonard H. Early mortality and primary causes of death in mothers of children with intellectual disability or autism spectrum disorder: a retrospective cohort study. PloS One 2014; 9(12): e113430. Retrieved from https://doi.org/10.1371/journal.pone.0113430

17. Barakat LP & Linney JA. Children with physical handicaps and their mothers: The interrelation of social support, maternal adjustment, and child adjustment. J Pediatr Psychol 1992; 17: 725-39

18. Dunst CJ, Trivette CM, Cross AH. Mediating influences of social support: Personal, family, and child outcomes. Am J Mental Def 1986; 90: 403-17.

19. Frey KS, Greenberg MT, Fewell RR. Stress and coping among parents of handicapped children: A multidimensional approach. Am J Mental Retardation 1989; 94: 240-9.

20. King G, King S, Rosenbaum P & Goffin R. Family- centered caregiving and well-being of parents of children with disabilities: Linking process with outcome. J Pediatr Psychol 1999; 24: 41–53.

21. Kronenberger WG & Thompson RJ. Psychological adaptation of mothers of children with spina bifida: Association with dimensions of social relationships. J Pediatr Psychol 1992; 17: 1–14.

22. Lambrenos K, Weindling AM, Calam R & Cox AD. The effect of a child’s disability on mother’s mental health. Arch Disabled Child 1996; 74: 115–20.

23. Oh H & Lee EO. Caregiver burden and social support among mothers raising children with developmental disabilities in South Korea. Int J Disab Dev Educ 2009; 56(2): 149-67.

24. Phipps S, Dunavant M, Lensing S & Rai SN. Psychosocial predictors of distress in parents of children undergoing stem cell or bone marrow transplantation. J Pediatr Psychol 2005; 30(2), 139-53.

25. Raina P, O’Donnell M, Rosenbaum P, Brehaut J, Walter SD, Russell D, Swinton M, Zhu B & Wood E. The health and well-being of caregivers of children with cerebral palsy. Pediatrics 2005; 115(6): e626–e636. Retrieved from https://doi.org/10.1542/peds.2004-1689

26. Singh G. The psychosocial impact of epilepsy on young people and their families. Epilepsy & Behavior 2011; 7:202-8.

27. Carona C, Silva N, Crespo C & Canavarro MC. Caregiving burden and parent-child quality of life outcomes in neurodevelopmental conditions: the mediating role of behavioral disengagement. J Clin Psychol Med Settings 2014; 21(4): 320–8. Retrieved from https://doi.org/10.1007/s10880-014-9412-5

28. Ferreira MC, Brunna LDN, Otsuka MYC, Barbosa ADM, Correa PFL & Gardenghi G. Assessing the burden on primary caregivers of children with cerebral palsy and its relation to quality of life and socioeconomic aspects. Acta Fisiatrica 2015; 22(1): 9-13.

29. Marrón EM, Redolar-Ripol D, Boixadós M, Nieto R, Guillamón N, Hernández E & Gómez B. Burden on

caregivers of children with cerebral palsy: Predictors and related factors. Universitas Psychologica 2013; 12(3):767-77. Retrieved December 06, 2021, from http://www.scielo.org.co/scielo.php?script=sci_arttext&pid=S165792672013000300010&lng=en&tlng=en

30. Poston DJ & Turnbull AP. Role of spirituality and religion in family quality of life for families of children with disabilities. Educ Training Dev Dis 2004; 39(2), 95–108. Retrieved Sep 19, 2017 from http://daddcec.org

31. Anum J & Dasti R. Caregiver burden, spirituality, and psychological well-being of parents having children with thalassemia. J Rel Health 2016; 55(3): 941–55. Retrieved from https://doi.org/10.1007/s10943-015-0127-1

32. Spurlock WR. Spiritual well-being and caregiver burden in Alzheimer’s caregivers. Geriatr Nurs 2005; 26(3): 154–61. Retrieved from https://doi.org/10.1016/j.gerinurse.2005.03.006

33. Yeh PM, Wierenga ME, Yuan SC. (2009), Influences of psychological well-being, quality of caregiver-patient relationship, and family support on the health of family caregivers for cancer patients in Taiwan. Asian Nurs Res 2009; 3(4): 154–66.

34. Schillings MK. Spiritual support as coping among Alzheimer’s caregivers (Master’s Theses). Louisiana State University, Louisiana, USA. 2012. Retrieved from http://digitalcommons.lsu.edu/gradschool_theses/734

35. Morano CL, King D. Religiosity as a mediator of caregiver well-being: does ethnicity make a difference? J Gerontol Social Work 2005; 45(1–2): 69–84.

36. Kroenke K, Spitzer RL, Williams JBW. The PHQ-9: Validity of a brief depression severity measure. J Gen

Pract Int Med 2001; 16(9): 606-13.

37. Spitzer RL, Kroenke K, Williams JBW, Lower B. A brief measure for assessing generalized anxiety disorder: The GAD-7. Arch Int Med 2006; 166(10): 1092.

38. Fetzer Institute, National Institute on Aging Working Group. Multidimensional Measurement of Religiousness Spirituality. Fetzer Institute, Kalamazoo, MI.

39. Reyes MPL. (unpublished work) (n.d.) Linquistic validation of a Filipino version of brief multidimensional measure of religiousness/spirituality in chronic pain patients.

40. Zarit SH, Reever KE and Back Peterson J. Relatives of the impaired elderly: Correlates of feelings of burden. The Gerontologist 1980; 20: 649-55.

41. Herbert R, Bravo G and Preville M. Reliability, validity and reference values of the Zarit Burden Interview for assessing informal caregivers of community-dwelling older persons with dementia. Can J Aging 2010: 499-507.

42. G o J. ( u n p u b l i s h e d w o r k ) D e ve l o p m e n t o f a psychoeducation program to address the expressed needs of caregivers of persons with schizophrenia at the UERM Memorial Hospital Psychiatry Out Patient Department.

43. Robinson C, Mandleco B, Olsen SF and Hart CH. Authoritative, authoritarian and permissive parenting practice: Development of a new measure. Psycho Rep 1995; 77: 819-30