Predictors of family burden in families caring for children with special needs


Abstract views: 770 / PDF downloads: 666

Authors

DOI:

https://doi.org/10.37291/2717638X.202341245

Keywords:

Family burden, Spousal support, Children with special needs, Parent

Abstract

Having a child with special needs has a significant impact on family life. While adapting to this new situation, parents often face difficulties related to the care of their children, family relations, and financial situation. The present study examined differences between family burden and spousal support perceived by mothers and fathers of children with special needs and investigated predictors of perceived family burden and spousal support. A total of 394 parents of children with disabilities (197 couples) from a large urban city in Northern Turkey participated in this survey study. Results showed the perceived family burden and spousal support differed significantly between couples. Mothers of children with special needs had significantly higher perceived family burden and significantly lower perceived spousal support in comparison to fathers. Moreover, perceived spousal support significantly predicted family burden perceived by mothers and fathers. Implications in relation to services offered to families of children with disabilities along with the recommendations for future research in this area are discussed.

References

Atila-Demir, S., & Keskin, G. (2018). The challenges that mothers of mentally handicapped children are facing with -a qualitative research. The Journal of Academic Social Science Studies, 66(2), 357-372. DOI: https://doi.org/10.9761/JASSS7528

Aydogan, D., & Kizildag, S. (2017). Examination of relational resilience with couple burnout and spousal support in families with a disabled child. The Family Journal, 25(4), 407-413. DOI: https://doi.org/10.1177/1066480717731215

Aysan, F., & Ozben, Ş. (2007). An investigation of the variables related to the quality of life of parents of disabled children. Journal of Buca Faculty of Education, 22, 1-6.

Bhatia, S. (2018). Promoting resiliency in families of individuals with disabilities: Role of coping resources, family support, social participation and perceived burden. Indian Journal of Health & Wellbeing, 9(4), 599-608.

Bildirici, F. (2014). Relationshi̇p between family burden and resilience of families of children with special education needs. Unpublished Master Thesis. Halic University, İstanbul.

Bornstein, M. H., & Putnick, D. L. (2016). Mothers’ and fathers’ parenting practices with their daughters and sons in lowand middle-income countries. Monograph of the Society for Research in Child Development, 81(1), 60–77. DOI: https://doi.org/10.1111/mono.12226

Bronfenbrenner, U. (1979). The ecology of human development: Experiments by nature and design. Harvard University Press.

Bronfenbrenner, U. (1986). Ecology of the family as a context for human development: Research perspectives. Developmental Psychology, 22(6), 723–742. DOI: https://doi.org/10.1037/0012-1649.22.6.723

Bronfenbrenner, U. (1995). Developmental ecology through space and time: A future perspective. In P. Moen, G. H. Elder Jr., & K. Lüscher, Examining lives in context: Perspectives on the ecology of human development (pp. 619–647). American Psychological Association. DOI: https://doi.org/10.1037/10176-018

Brown, A., McIsaac, J. L. D., Reddington, S., Hill, T., Brigham, S., Spencer, R., & Mandrona, A. (2020). Newcomer families' experiences with programs and services to support early childhood development in Canada: A scoping review. Journal of Childhood, Education & Society, 1(2), 182-215. DOI: https://doi.org/10.37291/2717638X.20201249

Busillo-Aguayo, J. (2010). Family experiences with accessing information, social and resource supports as participants in services for their special needs child over three years of age (Publication No. 3412332) [Doctoral dissertation, Pepperdine University]. Proquest.

Buyukozturk, S. (2018). Sosyal bilimler için veri analizi el kitabi. (24th ed). Pegem. DOI: https://doi.org/10.14527/9789756802748

Chachar, A. S., Younus, S., & Ali, W. (2021). Developmental understanding of death and grief among children during COVID-19 pandemic: application of Bronfenbrenner's bioecological model. Frontiers in Psychiatry, 12, 654584. DOI: https://doi.org/10.3389/fpsyt.2021.654584

Chou, K. R. (2000). Caregiver burden: A concept analysis. Journal of Pediatric Nursing, 15(6), 398-407. DOI: https://doi.org/10.1053/jpdn.2000.16709

Cidav, Z., Marcus, S. C., & Mandell, D. S. (2012). Implications of childhood autism for parental employment and earnings. Pediatrics, 129(4), 617–623. DOI: https://doi.org/10.1542/peds.2011-2700

Cokluk, Ö., Sekercioglu, G., & Buyukozturk, S. (2018). Sosyal bilimler için çok değişkenli istatistik: SPSS ve LİSREL uygulamaları. (5th ed.). Pegem Akademi.

De Caroli, M. E., & Sagone, E. (2013). Siblings and disability: A study on social attitudes toward disabled brothers and sisters. Procedia-Social and Behavioral Sciences, 93, 1217-23. DOI: https://doi.org/10.1016/j.sbspro.2013.10.018

Di Giulio, P., Philipov, D., & Jaschinski, I. (2014). Families with disabled children in different European countries. Families and Societies, Working Paper, 23, 1-44. http://www.familiesandsocieties.eu/wp-content/uploads/2014/12/WP23GiulioEtAl.pdf

Eriksson, M., Ghazinour, M., & Hammarström, A. (2018). Different uses of Bronfenbrenner’s ecological theory in public mental health research: what is their value for guiding public mental health policy and practice?. Social Theory & Health, 16(4), 414-433. DOI: https://doi.org/10.1057/s41285-018-0065-6

Frost, N., Devaney, C., & Herrera-Pastor, D. (2020). Understanding contemporary family support: Reflections on theoretical and conceptual frameworks. Social Work and Social Sciences Review: An Internal Journal of Applied Research, 21(2), 27-45. DOI: https://doi.org/10.1921/swssr.v21i2.1420

Gokgoz, C., & Kabukcuoglu, K. (2022). “Thanks to my child, I discovered that I am strong and I grew up with my child”: Personal growth in mothers of children with Down syndrome in Turkey. Research in Developmental Disabilities, 124. DOI: https://doi.org/10.1016/j.ridd.2022.104217

Harper, A., Dyches, T. T., Harper, J., Roper, S. O., & South, M. (2013). Respite care, marital quality, and stress in parents of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43, 2604–2616. DOI: https://doi.org/10.1007/s10803-013-1812-0

Hartley, S. L., DaWalt, L. S., & Schultz, H. M. (2017). Daily couple experiences and parent affect in families of children with versus without autism. Journal of Autism and Developmental Disorders, 47, 1645–1658. DOI: https://doi.org/10.1007/s10803-017-3088-2

Hayes, S.A., & Watson, S. L. (2013). The impact of parenting stress: a meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 43(3), 629–642. DOI: https://doi.org/10.1007/s10803-012-1604-y

Hintsanen, M., Gluschkoff, K., Dobewall, H., Cloninger, C. R., Keltner, D., Saarinen, A., Wesolowska, K., Volanen, S.-M., Raitakari, O. T., & Pulkki-Råback, L. (2019). Parent–child-relationship quality predicts offspring dispositional compassion in adulthood: A prospective follow-up study over three decades. Developmental Psychology, 55(1), 216–225. DOI: https://doi.org/10.1037/dev0000633

Hosokawa, R., & Katsura, T. (2017). Marital relationship, parenting practices, and social skills development in preschool children. Child and Adolescent Psychiatry and Mental Health, 11(2), 1-8. DOI: https://doi.org/10.1186/s13034-016-0139-y

Hsiao, Y. J. (2018). Parental stress in families of children with disabilities. Intervention in School and Clinic, 53(4), 201-205. DOI: https://doi.org/10.1177/1053451217712956

Huber, C. H., Navarro, R. L., Womble, M. W., & Mumme, F. (2010). Family resilience and midlife marital satisfaction. The Family Journal: Counseling and Therapy for Couples and Families, 18(2), 136–145. DOI: https://doi.org/10.1177/1066480710364477

Ilhan, N., Utaş-Akhan, L., Baygut, Ş., Dalli, G.N., & Yildirim, C. (2019). The factors affecting the family burden and depression status of families of children with down syndrome in Turkey. Journal of Mental Health Research in Intellectual Disabilities, 12(3-4), 176-195. DOI: https://doi.org/10.1080/19315864.2019.1654573

Irazábal, M., Marsà, F., García, M., Gutiérrez-Recacha, P., Martorell, A., Salvador-Carulla, L., & Ochoa, S. (2012). Family burden related to clinical and functional variables of people with intellectual disability with and without a mental disorder. Research in Developmental Disabilities, 33(3), 796–803. DOI: https://doi.org/10.1016/j.ridd.2011.12.002

Kaner, S. (2004). Perceived stress, social support and life satisfaction in parents with disabled children. Unpublished Research Report. Ankara University. https://dspace.ankara.edu.tr/xmlui/handle/20.500.12575/68118

Kanter, J. B., & Proulx, C. M. (2019). The longitudinal association between maternal parenting stress and spousal supportiveness. Journal of Family Psychology, 33(1), 121-131. DOI: https://doi.org/10.1037/fam0000478

Karakus, O., & Kirlioglu, M. (2019). Life experiences of having a disabled child: A qualitative research on mothers. Selçuk University Social Sciences Institute Journal, 41, 96-112.

Karasar, N. (2015). Bilimsel araştırma yöntemi. Nobel Yayinevi.

Karayagiz-Muslu, G., & Coskun-Cenk, S. (2018). The family burdens and hopelessness of Turkish parents of adolescents with intellectual disabilities. Rehabilitation Nursing, 43(6), 351-362. DOI: https://doi.org/10.1097/rnj.0000000000000081

Langley, E., Totsika, V., & Hastings, R. P. (2017). Parental relationship satisfaction in families of children with autism spectrum disorder (ASD): A multilevel analysis. Autism Research, 10(7), 1259–1268. DOI: https://doi.org/10.1002/aur.1773

Lawrence, E., Bunde, M., Barry, R., Brock, R. L., Sullivan, K. T., Pasch, L. A., White, G. A., Dowd, C. E., & Adams, E. E. (2008). Partner support and marital satisfaction: Support amount, adequacy, provision and solicitation. Personal Relationships, 15(4), 445–463. DOI: https://doi.org/10.1111/j.1475-6811.2008.00209.x

Luz, A., & Berni, N. (2010). Paternity process in the adolescence. Brazilian Journal of Nursing, 63(1), 43-50. DOI: https://doi.org/10.1590/S0034-71672010000100008

Manor-Binyamini, I. (2011). Mothers of children with developmental disorders in the Bedouin community in Israel: Family functioning, caregiver burden, and coping abilities. Journal of Autism and Developmental Disorders, 41, 610–17. DOI: https://doi.org/10.1007/s10803-010-1080-1

Marks, J. L., Lam, C. B. & McHale, S. M. (2009). Family patterns of gender role attitudes. Sex Roles, 61, 221–234. DOI: https://doi.org/10.1007/s11199-009-9619-3

Mese, İ. (2013). Disabled motherhood: Mothers of children with intellectual disability. Turkish Studies, 8(12), 841-858.

Nam, S. J., & Park, E. Y. (2017). Relationship between caregiving burden and depression in caregivers of individuals with intellectual disabilities in Korea. Journal of Mental Health, 26(1), 50-56. DOI: https://doi.org/10.1080/09638237.2016.1276538

O'Leary, S. G., & Vidair, H. B. (2005). Marital adjustment, child-rearing disagreements, and overreactive parenting: Predicting child behavior problems. Journal of Family Psychology, 19(2), 208-216. DOI: https://doi.org/10.1037/0893-3200.19.2.208

Ozsenol, F., Isikhan, V., Unay B., Aydin, H. İ., Akin, R., & Gokcay, E. (2003). The evaluation of family functions of families with handicapped children. Gülhane Medical Journal, 45(2), 156-164.

Papadopoulos, D. (2021). Mothers’ experiences and challenges raising a child with autism spectrum disorder: A qualitative study. Brain Sciences, 11(309), 1-16. DOI: https://doi.org/10.3390/brainsci11030309

Papp, L. M., Goeke-Morey, M. C., & Cummings, E. M. (2004). Mothers' and fathers' psychological symptoms and marital functioning: Examination of direct and interactive links with child adjustment. Journal of Child and Family Studies, 13(4), 469-482. DOI: https://doi.org/10.1023/B:JCFS.0000044728.34058.c0

Peer, J. W., & Hillman, S. B. (2014). Stress and resilience for parents of children with intellectual and developmental disabilities: A review of key factors and recommendations for practitioners. Journal of Policy and Practice in Intellectual Disabilities, 11(2), 92-98. DOI: https://doi.org/10.1111/jppi.12072

Picardi, A., Gigantesco, A., Tarolla, E., Stoppioni, V., Cerbo, R., Cremonte, M., Alessandri, G., Lega, I., & Nardocci, F. (2018). Parental burden and its correlates in families of children with autism spectrum disorder: A multicentre study with two comparison groups. Clinical Practice & Epidemiology in Mental Health, 14, 143–176. DOI: https://doi.org/10.2174/1745017901814010143

Plant, K. M., & Sanders, M. R. (2007). Predictors of care-giver stress in families of preschool aged children with developmental disabilities. Journal of Intellectual Disability Research, 51(2) 109-124. DOI: https://doi.org/10.1111/j.1365-2788.2006.00829.x

Rana, R., Sood, R., & Bhardwaj, S. (2021). Women and children's well-being in Indian nuclear families during the COVID-19 pandemic. Journal of Childhood, Education & Society, 2(2), 178-193. DOI: https://doi.org/10.37291/2717638X.202122108

Reevy, G. M., & Maslach, C. (2001). Use of social support: Gender and personality differences. Sex Roles, 44, 437–59. DOI: https://doi.org/10.1023/A:1011930128829

Sahu, S., Sahu, K.K., & Tanwar, S. (2019). Perceived stress, social support, family burden and stigma among caregivers of persons with ıntellectual disability. Journal of Disability Studies, 5(1), 31-36.

Sales, E. (2003). Family burden and quality of life. Quality of Life Research, 12(1), 33–41. DOI: https://doi.org/10.1023/A:1023513218433

Samter, W. (2002). How gender and cognitive complexity influence the provision of emotional support: A study of indirect effects. Communication Reports, 15(1), 5-16. DOI: https://doi.org/10.1080/08934210209367748

Seligman, M., & Darling, R. B. (2007). Ordinary families, special children: A systems approach to childhood disability. The Guilford Press.

Sim, A., Cordier, R., Vaz, S., & Falkmer, T. (2016). Relationship satisfaction in couples raising a child with autism spectrum disorder: A systematic review of the literature. Research in Autism Spectrum Disorder, 31, 30–52. DOI: https://doi.org/10.1016/j.rasd.2016.07.004

Smith, L. E., Hong, J., Seltzer, M. M., Greenberg, J. S., Almeida, D. M., & Bishop, S. L. (2010). Daily experiences among mothers of adolescents and adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 40(2), 167–178. DOI: https://doi.org/10.1007/s10803-009-0844-y

Spiteri, J. (2021). The impact of the COVID-19 pandemic on children’s mental health and wellbeing, and beyond: A scoping review. Journal of Childhood, Education & Society, 2(2), 126–138. DOI: https://doi.org/10.37291/2717638X.20212294

Ström, H., Kreuter, M., & Rosberg, S. (2012). Quality of life in parents/caretakers of children with cerebral palsy in Kampong Cham, Cambodia. Journal of Tropical Pediatrics, 58(4), 303–306. DOI: https://doi.org/10.1093/tropej/fmr077

Swick, K. J., & Williams, R. D. (2006). An analysis of Bronfenbrenner’s bio-ecological perspective for early childhood educators: Implications for working with families experiencing stress. Early Childhood Education Journal, 33(5), 371-378. DOI: https://doi.org/10.1007/s10643-006-0078-y

Turan-Gurhopur, F. D., & Isler-Dalgic, A. (2017). Family burden among parents of children with intellectual disability. Journal of Psychiatric Nursing, 8(1), 9-16 DOI: https://doi.org/10.14744/phd.2017.87609

Turkish Ministry of Family and Social Services. (2022a). 2022- 2026 Strategic Plan. https://www.aile.gov.tr/media/101050/2022-2026-stratejik-plani.pdf

Turkish Ministry of Family and Social Services. (2022b). 2030 Barrier-Free Vision Document. https://www.aile.gov.tr/media/94718/2030_engelsiz_vizyon_belgesi.pdf

Turkish Ministry of Family and Social Services. (2022c). 2023-2025 The National Action Plan for the Rights of Persons with Disabilities. https://www.aile.gov.tr/media/122989/engell_haklari_ulusal_eylem_plani_2023-2025.pdf

Turnbull, A., Turnbull, R., Erwin, E., Soodak, L., & Shogren, K. (2011). Families, professionals, and exceptionality: Positive outcomes through partnerships and trust (6th Ed.). Merrill/Prentice Hall.

Unwin, G., & Deb, S. (2011). Family caregiver uplift and burden: Associations with aggressive behaviour in adults with intellectual disability. Journal of Mental Health Research in Intellectual Disability, 4(3), 186–205. DOI: https://doi.org/10.1080/19315864.2011.600511

Wieland, N., & Baker, B. L. (2010). The role of marital quality and spousal support in behaviour problems of children with and without intellectual disability. Journal of Intellectual Disability Research, 54(7), 620-633. DOI: https://doi.org/10.1111/j.1365-2788.2010.01293.x

Woodgate, R. L., Ateah, C., & Secco, L. (2008). Living in a world of our own: The experience of parents who have a child with autism. Qualitative Health Research, 18(8), 1075–1083. DOI: https://doi.org/10.1177/1049732308320112

Woodman, A. C., Mawdsley, H. P., & Hauser-Cram, P. (2015). Parenting stress and child behavior problems within families of children with developmental disabilities: Transactional relations across 15 years. Research in Developmental Disabilities, 36, 264-276. DOI: https://doi.org/10.1016/j.ridd.2014.10.011

Xu, Y., & Burleson, B. R. (2001). Effects of sex, culture, and support type on perceptions of spousal social support: An assessment of the ‘‘support gap’’ hypothesis in early marriage. Human Communication Research, 27(4), 535-566. DOI: https://doi.org/10.1111/j.1468-2958.2001.tb00792.x

Yildirim, I. (2004). Development of spousal support scale. Turkey Psychological Counseling and Guidance Journal, 3(22), 19-25.

Yildirim-Dogru, S., & Arslan, E. (2008). Engelli çocuğu olan annelerin sürekli kaygı düzeyi ile durumluk kaygı düzeylerinin karşılaştırılması. Selçuk University Social Sciences Institute Journal, 19, 543–553.

Yildirim-Sari, H., & Basbakkal, Z. (2008). Developing “A Family Burden Assessment Scale” for the families of children with intellectual disability. Journal of Anatolia Nursing and Health Sciences, 11(3), 86-95.

Downloads

Published

2023-02-15

How to Cite

Rakap, S., Vural-Batik, M., & Coleman, H. (2023). Predictors of family burden in families caring for children with special needs. Journal of Childhood, Education & Society, 4(1), 56–71. https://doi.org/10.37291/2717638X.202341245