Caregiver Burden among Parents of Hearing Impaired and Intel-lectually Disabled Children in Pakistan
Background: Caregiver burden is a multidimensional response to physical, psychological, emotional, social and financial stressors, usually associated with the experience of caring and can be objective or subjective. The objective of current study was to explore the caregiver burden among parents of hearing impaired and intellectually challenged children in Pakistan.
Methods: A Comparative cross sectional survey was conducted on n=162 parents of hearing impaired (HI) and intellectually challenged (IC) children from July 2018 to February 2019. Convenient sampling technique was used to collect the data from Parents of hearing impaired and intellectually challenged children with age range 1-16 years in National Institute of Rehabilitation Medicine and Al-Farabi Special Education Institute Islamabad. Caregiver Burden Inventory was used to assess the caregiver burden.
Results: The results showed a greater need for respite and other services in both groups. Parents of intellectually challenged children need more respite and other services as compared to hearing impaired children (60.62±11.43 ver. 45.74±11.20, p<0.001). A total of 3 (4.0%) parents of hearing impaired children reported rare need for respite and other services, 32(42.7%) reported sometimes and 40(53.3%) reported frequent need. On the other hand 12(13.8%) parents of intellectually disabled children reported sometimes, 66(75.9%) reported quite frequently and 9(10.3%) nearly always a greater need for respite and other services.
Conclusion: The parents of hearing impaired or intellectually challenged children face significant burden of their disabled child. In addition, due to cognitive deficits that lead to behavioural abnormalities the parents of intellectually challenged children face more burden and stress.
2. Armour C, Műllerová J, Elhai JD (2016). A systematic literature review of PTSD's latent structure in the Diagnostic and Statistical Manual of Mental Disorders: DSM-IV to DSM-5. Clin Psychol Rev. 44:60-74
3. Carulla Ls, Reed Gm, Vaez‐Azizi Lm et al (2011). Intellectual developmental disorders: towards a new name, definition and framework for “mental retardation/intellectual disability” in ICD‐11. World Psychiatry, 10:175-80.
4. Chang MY, McConkey R (2008). The perceptions and experiences of Taiwanese parents who have children with an intellectual disability. Int J Disabil Dev Ed, 55:27-41.
5. Höglund Carlsson L, Norrelgen F, Kjellmer L et al (2013). Coexisting disorders and problems in preschool children with autism spectrum disorders. ScientificWorld Journal, 2013;1-6.
6. Hastings RP (2002). Parental stress and behaviour problems of children with developmental disability. J Intellect Dev Disabil, 27:149-160.
7. Hobfoll SE (2004). Stress, culture, and community: The psychology and philosophy of stress. ed. Springer Science & Business Media.
8. Organization WH (2001) The World Health Report 2001: Mental health: new understanding, new hope. World Health Organization.
9. Lefley HP (1987). Aging parents as caregivers of mentally ill adult children: An emerging social problem. Hosp Community Psychiatry, 38:1063-70.
10. Shield B (2006). Evaluation of the social and economic costs of hearing impairment. Hear-it AISBL:1-202.
11. Smith M (2004). Parental mental health: disruptions to parenting and outcomes for children. Child and Family Social Work, 9:3-11.
12. Beresford BA (1994). Resources and strategies: How parents cope with the care of a disabled child. J Child Psychol Psychiatry, 35:171-209.
13. Thoits PA (1995). Stress, coping, and social support processes: Where are we? What next? J Health Soc Behav:53-79.
14. Gallagher S, Phillips AC, Oliver C, Carroll D (2008). Predictors of psychological morbidity in parents of children with intellectual disabilities. J Pediatr Psychol, 33:1129-36.
15. Phillips AC, Gallagher S, Hunt K et al (2009). Symptoms of depression in non‐routine caregivers: the role of caregiver strain and burden. Br J Clin Psychol, 48:335-46.
16. Resch JA, Mireles G, Benz MR et al (2010). Giving parents a voice: A qualitative study of the challenges experienced by parents of children with disabilities. Rehabil Psychol, 55:139-50.
17. Novak M, Guest C (1989). Application of a multidimensional caregiver burden inventory. Gerontologist, 29:798-803.
18. Meinzen-Derr J, Lim LH, Choo DI et al (2008). Pediatric hearing impairment caregiver experience: Impact of duration of hearing loss on parental stress. Int J Pediatr Otorhinolaryngol, 72:1693-1703.
19. Meadow-Orlans KP (1995). Sources of stress for mothers and fathers of deaf and hard of hearing infants. Am Ann Deaf, 140:352-357.
20. Spahn C, Richter B, Burger T et al (2003). A comparison between parents of children with cochlear implants and parents of children with hearing aids regarding parental distress and treatment expectations. Int J Pediatr Otorhinolaryngol, 67:947-955.
21. Vinayak S, Dhanoa SK, Vinayak R (2016). Relationship of hopelessness, depression and quality of life in mothers of persons with disabilities. I J Innovat Appl Studies, 17:306-311.
22. Hassall R, Rose J, McDonald J (2005). Parenting stress in mothers of children with an intellectual disability: The effects of parental cognitions in relation to child characteristics and family support. J Intellect Disabil Res, 49:405-418.
23. Tsai SM, Wang HH (2009). The relationship between caregiver’s strain and social support among mothers with intellectually disabled children. J Clin Nurs, 18:539-548.
24. Khasakhala L, Ndetei D, Mutiso V et al (2012). The prevalence of depressive symptoms among adolescents in Nairobi public secondary schools: association with perceived maladaptive parental behaviour. Afr J Psychiatry (Johannesbg), 15:106-13.
25. Brust JD, Leonard BJ, Sielaff BH (1992). Maternal time and the care of disabled children. Public Health Nurs, 9:177-184.
26. Atienza BAA, Aspacio KT, Gonzaga MAM, Sahiri KNJ (2017). Caregivers challenges and quality of care towards mentally retarded children. GSTF J Nurs Health Care, 3.
27. Carpiniello B, Piras A, Pariante CM, Carta MG, Rudas N (1995). Psychiatric morbidity and family burden among parents of disabled children. Psychiatr Serv.1995:46(9):940-2.
28. Trute B (1995). Gender differences in the psychological adjustment of parents of young, developmentally disabled children. J child psycholo psychiat, 36:1225-1242.
29. Beckman PJ (1991). Comparison of mothers' and fathers' perceptions of the effect of young children with and without disabilities. Am J Ment Retard, 1991 ;95(5):585-95.
30. Sloper P, Turner S (1993). Risk and resistance factors in the adaptation of parents of children with severe physical disability. J Child Psychol Psychiatry, 34:167-88.
31. Azeem MW, Dogar IA, Shah S, Cheema MA et al (2013). Anxiety and depression among parents of children with intellectual disability in Pakistan. J Can Acad Child Adolesc Psychiatry. 22(4): 290–295.
32. Oh H, Lee EKO (2009). Caregiver burden and social support among mothers raising children with developmental disabilities in South Korea. Int J Disabil Dev Ed, 56:149-167.
33. Yilmaz H, Erkin G, Ízki AA (2013). Quality of life in mothers of children with Cerebral Palsy. ISRN Rehabilitation, 1-5.
34. Kelly JB (2000). Children's adjustment in conflicted marriage and divorce: A decade review of research. J Am Acad Child Adolesc Psychiatry, 39:963-973.
35. Raina P, O’Donnell M, Rosenbaum P et al (2005). The health and well-being of caregivers of children with cerebral palsy. Pediatrics, 115:e626-36.
36. Yildirim Sari H, Başbakkal Z (2010). Depression among mothers of children and adults with an intellectual disability in Turkey. Int J Nurs Pract, 16:248-253.
37. Estes A, Munson J, Dawson G et al (2009). Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism, 13:375-387.
38. Esdaile SA, Greenwood KM (2003). A comparison of mothers' and fathers' experience of parenting stress and attributions for parent–child interaction outcomes. Occup Ther Int, 10:115-26.