Quality of Life in Families of Children with Develоpmental Disabilities: The Impact of Family Characteristics and Stress Levels
Abstract
The quality of life in families of children with developmental disabilities significantly influences family functionality and the well-being of all members. Various family characteristics often affect this quality. This study aimed to examine the impact of family characteristics and family stress levels on the quality of life in families of children with developmental disabilities. The sample consisted of 122 parents of children with developmental disabilities. Data were collected using a sociodemographic questionnaire, the Beach Center Family Quality of Life Scale (Beach FQOL Scale), and the Stress Symptoms Scale-16.
The results showed that parents rated their family’s quality of life as satisfactory, with Family Interactions being the highest-rated domain and Emotional Well-being the lowest. Families with only one child reported better quality of life in the domains of Family Interactions, Parenting, and Support compared to families with three or more children. Families of children with hearing, speech, or voice impairments reported the highest satisfaction in the Family Interactions domain. Furthermore, the findings indicated that parents in the sample experienced relatively low stress levels, with no significant correlation between family quality of life and stress levels.
References
Младеновић, Л. (2019). Квалитет живота породица с сметњама у развоју (одбрањен мастер рад). Факултет за специјалну едукацију и рехабилитацију, Београд.
Несторов, С. и Несторов, В. (2020). Квалитет живота породице глуве деце. У: М. Николић, М. Шешум и И. Веселиновић (ур.), Специфичност оштећења слуха – нове тенденције: тематски зборник радова (стр. 315–333). Београд: Универзитет у Београду, Факултет за специјалну едукацију и рехабилитацију, Издавачки центар Факултета (ИЦФ).
Abidin, R. R. (1990). Introduction to the Special issue: The stress of parenting. Journal of Clinical Child Psychology, 19(4), 298–301. https://doi.org/10.1207/s15374424jccp1904_1
Al-Farsi, O., Al-Farsi, Y., Al-Sharbati, M., & Al-Adawi, S. (2016). Stress, anxiety, and depression among parents of children with autism spectrum disorder in Oman: A case control study. Neuropsychiatric Disease and Treatment, 12, 1943–1951. https://doi.org/10.2147/ndt.s107103
Alnahdi, G. H. (2024). Variations in perceptions of well-being within families of youths with intellectual disabilities in Saudi Arabia. Children, 11(6), 644. https://doi.org/10.3390/children11060644
Axelsson, A. K., Granlund, M., & Wilder, J. (2013). Engagement in family activities: A quantitative, comparative study of children with profound intellectual and multiple disabilities and children with typical development. Child: Care, Health and Development, 39(4), 523–534. https://doi.org/10.1111/cch.12044
Axelsson, A. K., & Wilder, J. (2014). Frequency of occurrence and child presence in family activities: A quantitative, comparative study of children with profound intellectual and multiple disabilities and children with typical development. International Journal of Developmental Disabilities, 60(1), 13–25. https://doi.org/10.1179/2047387712Y.0000000008
Badu, E. (2016). Experiences of parents of children with intellectual disabilities in the Ashanti Region of Ghana. Journal of Social Inclusion, 7(1), 20–30. https://doi.org/10.36251/josi100
Balton, S. (2009). Family-Based Activity Settings of Typically Developing Three-to-Five-Year Old Children in a Low-Income African Context (Doctoral dissertation). University of Pretoria, Pretoriа.
Bakoč, A. i Kalajdžić, O. (2019). Kvalitet porodičnog života roditelja djece sa smetnjama u razvoju. U: M. Nikolić i M. Vantić-Tanjić (ur.), Unapređenje kvalitete života djece i mladih: tematski zbornik (str. 325–335). Tuzla: Udruženje za podršku i kreativni razvoj djece i mladih, Univerzitet u Tuzli, Edukacijsko-rehabilitacijski fakultet.
Benjak, T. (2010). Kvalitet života i zdravlje roditelja djece s pervazivnim razvojnim poremećajima (odbranjena doktorska disertacija). Medicinski fakultet, Zagreb.
Bertelli, M., Bianco, A., Rossi, M., Scuticchio, D., & Brown, I. (2011). Relationship between individual quality of life and family quality of life for people with intellectual disability living in Italy. Journal of Intellectual Disability Research, 55(12), 1135–1150. https://doi.org/10.1111/j.1365-2788.2011.01464.
Bhopti, A., Brown, T., & Lentin, P. (2016). Family quality of life: A key outcome in early childhood intervention services—A scoping review. Journal of Early Intervention, 38(4), 191–211. https://doi.org/10.1177/1053815116673182
Boehm, T., & Carter, E. (2019). Family quality of life and its correlates among parents of children and adults with intellectual disability. American Journal on Intellectual and Developmental Disabilities, 124(2), 99–115. https://doi.org/10.1352/1944-7558-124.2.99
Bogdanović, A. i Spasić Šnele, M. (2018). Postoji li razlika u procjeni kvalitete života između roditelja djece s teškoćama u razvoju i roditelja djece bez teškoća u razvoju: metaanaliza. Ljetopis socijalnog rada, 25 (2), 249–271. https://doi.org/10.3935/ljsrv25i2.153
Borilli, M. C., Germano, C. M. R., de Avó, L. R. D. S., Pilotto, R. F., & Melo, D. G. (2022). Family quality of life among families who have children with mild intellectual disability associated with mild autism spectrum disorder. Arquivos de Neuro-psiquiatria, 80(04), 360–367. https://doi.org/10.1590/0004-282x-anp-2020-0537
Božin, A. A. (1992). Osjećaj koherentnosti, simptomi stresa i školski uspeh. Humanitas, 24 (1–4), 49–65.
Brown, R. I. (2008). Family quality of life: Reappraisal of challenges and supports where there is a child with a complex disability. Inspire, 2(2), 4–8.
Chou, Y.-C., Lin, L.-C., Chang, A.-L., & Schalock, R. L. (2007). The quality of life of family caregivers of adults with intellectual disabilities in Taiwan. Journal of Applied Research in Intellectual Disability, 20(3), 200–210. https://doi.org/10.1111/j.1468-3148.2006.00318
Cramm, J. M., & Nieboer, A. P. (2011). Psychological well-being of caregivers of children with intellectual disabilities: Using parental stress as a mediating factor. Journal of Intellectual Disabilities, 15(2), 101–113. https://doi.org/10.1177/1744629511410922
Cummins, R. A. (2001). Objective and subjective quality of life: An interactive model. Social Indicators Research, 52(1), 55–72. https://doi.org/10.1023/A:1007027822521
Čagran, B., Schmidt, M., & Brown, I. (2011). Assessment of the quality of life in families with children who have intellectual and developmental disabilities in Slovenia. Journal of Intellectual Disability Research, 55(12), 1164–1175. https://doi.org/10.1111/j.1365-2788.2011.01400
Dabrowska, A., & Pisula, E. (2010). Parenting stress and coping styles in mothers and fathers of pre-school children with autism and Down syndrome. Journal of Intellectual Disability Research, 54(3), 266–280. https://doi.org/10.1111/j.1365-2788.2010.01258
Dardas, L., & Ahmad, M. (2014). Quality of life among parents of children with autistic disorder: A sample from the Arab world. Research in Developmental Disabilities, 35(2), 278–287.
Davis, K., & Gavidia-Payne, S. (2009). The impact of child, family, and professional support characteristics on the quality of life in families of 334 young children with disabilities. Journal of Intellectual and Developmental Disability, 34(2), 153–162. https://doi.org/10.1080/13668250902874608
Deater-Deckard, K. (1998). Parenting stress and child adjustment: Some old hypotheses and new questions. Clinical Psychology: Science and Practice, 5(3), 314–332. https://doi.org/10.1111/j.1468-2850.1998.tb00152
Delale, E. A. (2011). Povezanost doživljaja roditeljske kompetentnosti i emocionalne izražajnosti s intenzitetom roditeljskog stresa majki. Psihologijske teme, 20 (2), 187–212.
Dizdarevic, A., Memisevic, H., Osmanovic, A., & Mujezinovic, A. (2022). Family quality of life: Perceptions of parents of children with developmental disabilities in Bosnia and Herzegovina. International Journal of Developmental Disabilities, 68(3), 274–280. https://doi.org/10.1080/20473869.2020.1756114
Droogmans, G., Vergaelen, E., Van Buggenhout, G., & Swillen, A. (2021). Stressed parents, happy parents. An assessment of parenting stress and family quality of life in families with a child with Phelan-McDermid syndrome. Journal of Applied Research in Intellectual Disabilities, 34(4), 1076–1088. https://doi.org/10.1111/jar.12858
Dyson, L. L. (1993). Response to the presence of a child with disabilities: Parental stress and family functioning over time. American Journal of Mental Retardation, 98(2), 207–218.
Gine, C., Gracia, M., Vilaseca, R., Beltran, F. S., Balcells-Balcells, A., Montala, M. D., Adam-Alcocer, A. L., Pro, M. T., Simo-Pinatella, D., & Mas Mestre, J. M. (2015). Family quality of life for people with intellectual disabilities in Catalonia. Journal of Policy and Practice in Intellectual Disabilities, 12(4), 244–254. https://doi.org/10.1111/jppi.12134
Gojčeta, M., Joković-Oreb, I. i Pinjatela, R. (2008). Neki aspekti kvalitete života adolescenata sa i bez cerebralne paralize. Hrvatska revija za rehabilitacijska istraživanja, 44(1), 39–47.
Guo, L. (2020). Research on Family Quality of Life in Families of Young Children with Disabilities in China (Doctoral dissertation). Palacký University Olomouc.
Gupta, B. V. (2007). Comparison of parenting stress in different developmental disabilities. Journal of Developmental and Physical Disabilities, 19(4), 417–425. https://doi.org/10.1007/s10882-007-9060-x
Hoffman, L., Marquis, J., Poston, D., Summers, J. A., & Turnbull, A. (2006). Assessing family outcomes: Psychometric evaluation of the beach center family quality of life scale. Journal of Marriage and Family, 68, 1069–1083. https://doi.org/10.1111/j.1741-3737.2006.00314
Hrkać, A. (2021). Usporedba stručnjačke i roditeljske percepcije roditeljskog ponašanja I roditeljskog stresa kod roditelja djece rane dobi urednog i rizičnog razvojnog obrasca (Završni specijalistički rad). Edukacijsko-rehabilitacijski fakultet, Sveučilište u Zagrebu.
Hsiao, Y. J. (2018). Autism spectrum disorders: Family demographics, parental stress, and family quality of life. Journal of Policy and Practice in Intellectual Disabilities, 15(1), 70–79. https://doi.org/10.1111/jppi.12232
Hu, X., Wang, M., & Fei, X. (2012). Family quality of life of Chinese families of children with intellectual disabilities. Journal of Intellectual Disability Research, 56(1), 30–44. https://doi.org/10.1111/j.1365-2788.2011.01391
Jenaro, C., Flores, N., Gutiérrez-Bermejo, B., Vega, V., Pérez, C., & Cruz, M. (2020). Parental stress and family quality of life: surveying family members of persons with intellectual disabilities. International Journal of Environmental Research and Public Health, 17(23), 9007. https://doi.org/10.3390/ijerph17239007
Kaliterna Lipovčan, Lj., Brkljević, T., & Tadić, M. (2013). Tobacco consumption, alcohol intake frequency and quality of life: Results from a nationally respresentative Croatian sample study. Društvena istraživanja: časopis za opća društvena pitanja, 22 (4), 1–23.
Kimura, M. (2018). Social determinants of self-rated health among Japanese mothers of children with disabilities. Preventive Medicine Reports, 10, 129–135. https://doi.org/10.1016/j.pme-dr.2018.02.017
Kuru, N., & Piyal, B. (2018). Perceived social support and quality of life of parents of children with Autism. Nigerian Journal of Clinical Practice, 21(9), 1182–1189. https://doi.org/10.4103/njcp.njcp_13_18
Majd, M. A., & Sareskanrud, M. K. (2012). A comparative study of quality of life between parents of children with Down syndrome and parents of normal children. Technical Journal of Engineering and Applied Sciences, 2(3), 74–78.
Majnemer, A., Shevell, M., Law, M., Birnbaum, R., & Chilingryan, G. (2008). Participation in leisure activities in children with cerebral palsy. Developmental Medicine & Child Neurology, 50(10), 751–758. https://doi.org/10.1111/j.1469-8749.2008.03068
Marquis, S. M., McGrail, K., & Hayes, M. (2019). Mental health of parents of children with a developmental disability in British Columbia, Canada. Journal of Epidemiology and Community Health, 74(2), 173–178. https://doi.org/10.1136/jech-2018-211698
Masefield, S. C., Prady, S. L., Sheldon, T. A., Small, N., Jarvis, S., & Pickett, K. E. (2020). The caregiver health effects of caring for young children with developmental disabilities: A meta-analysis. Maternal and Child Health Journal, 24(5), 561–574. https://doi.org/10.1007/s10995-020-02896-5
Meral, B. F., Cavkaytar, A., Turnbull, A. P., & Wang, M. (2013). Family quality of life of Turkish families who have children with intellectual disabilities and autism. Research and Practice for Persons with Severe Disabilities, 38(4), 233–246. https://doi.org/10.1177/154079691303800403
Milićević, M. (2015). Kvalitet života porodica sa detetom sa ometenošću. Beogradska defektološka škola, 21 (2), 39–60.
Milićević, M. i Nedović, G. (2017). Povezanost porodičnog kvaliteta života i participacije u porodičnim aktivnostima dece s cerebralnom paralizom i dece tipičnog razvoja. Beogradska defektološka škola, 23 (3), 41–64.
Milićević, M., Krstić, D. i Jakovljević, D. (2014). Porodični kvalitet života dece i adolescenata sa cerebralnom paralizom. U: S. Potić (ur.), Aktuelnosti u edukaciji i rehabilitaciji osoba sa smetnjama u razvoju (str. 23–24). Beograd: Resursni centar za specijalnu edukaciju.
Mora, F. C., Ibáñez, A., & Balcells-Balcells, A. (2020). State of the art of family quality of life in early care and disability: A systematic review. International Journal of Environmental Research and Public Health, 17(19), 7220. https://doi.org/10.3390/ijerph17197220
Padden, C., & James, J. E. (2017). Stress among parents of children with and without autism spectrum disorder: A comparison involving physiological indicators and parent self-reports. Journal of Developmental and Physical Disabilities, 29(4), 567–586. https://doi.org/10.1007/s10882-017-9547-z
Pousada, M., Guillamón, N., Hernández-Encuentra, E., Muñoz, E., Redolar, D., Boixadós, M., & Gómez Zúñiga, B. (2013). Impact of caring for a child with cerebral palsy on the quality of life of parents: A systematic review of the literature. Journal of Developmental and Physical Disabilities, 25(5), 545–577. http://dx.doi.org/10.1007/s10882-013-9332-6
Ra, Y.-A., & Kim, W. H. (2016). Impact of employment and age on quality of life of individuals with disabilities: A multilevel analysis. Rehabilitation Counseling Bulletin, 59, 112–120. http://dx.doi.org/10.1177/0034355215573538
Rajić, M., Mihić, I. i Kopunović Torma, D. (2015). Socioemocionalna posvećenost roditelja dece sa smetnjama u razvoju: razlike između majki i očeva. Годишњак Филозофског факултета у Новом Саду, 40 (2), 137–152.
Rajska, D. (2009). Prediction of Social Competence and Social Integration on Children with or at Risk for Intellectual Disability (Doctoral dissertation). Department of Psychology, Queen’s University, Kingston, Ontario, Canada.
Rillota, F., Kirby, N., Shearer, J., & Netelbeck, T. (2012). Family quality of life of Australian families with a member with an intellectual developmental disability. Journal of Intellectual Disability Research, 56(1), 71–86. https://doi.org/10.1111/j.1365-2788.2011.01462
Sarajlija, A., Рurić, M., & Kisić-Tepavčević, D. (2013). Health-related quality of life and depression in Rett syndrome caregivers. Vojnosanitetski pregled, 70(9), 842–847. https://doi.org/10.2298/VSP1309842S
Sepa, A., Frodi, A., & Ludvingsson, J. (2004). Psychosocial correlates of parenting stress, lack of support and lack of confidence/security. Scandinavian Journal of Psychology, 45(2), 169–179. https://doi.org/10.1111/j.1467-9450.2004.00392
Schlebusch, L., Dada, S., & Samuels, A. E. (2017). Family quality of life of South African families raising children with autism spectrum disorder. Journal of Autism and Developmental Disordes, 47, 1966–1977. https://doi.org/10.1007/s10803-017-3102-8
Smith, T. B., Oliver, M. N. I., & Innocenti, M. S. (2001). Parenting stress in families of children with disabilities. American Journal of Orthopsychiatry, 71(2), 257–261. https://doi.org/10.1037/0002-9432.71.2.257
Staunton, E., Kehoe, C., & Sharkey, L. (2020). Families under pressure: Stress and quality of life in parents of children with an intellectual disability. Irish Journal of Psychological Medicine, 40(2), 192–199. https://doi.org/10.1017/ipm.2020.4
Stojiljković, A. (2013). Empatija, anksioznost i samopoštovanje kod braće/sestara mentalno nedovoljno razvijenih osoba (neobjavljeni magistarski rad). Filozofski fakultet, Niš.
Svraka, E., Loga, S., & Brown, I. (2011). Family quality of life: Adult school children with intellectual disabilities in Bosnia and Herzegovina. Journal of Intellectual Disability Research, 55(12), 1115–1122. https://doi.org/10.1111/j.1365-2788.2011.01434.x
Vasilopoulou, E., & Nisbet, J. (2016). The quality of life of parents of children with autism spectrum disorder: A systematic review. Research in Autism Spectrum Disorders, 23, 36–49. http://doi.org/10.1016/j.rasd.2015.11.008
Vonneilich, N., Lüdecke, D., & Kofahl, C. (2016). The impact of care on family and health-related quality of life of parents with chronically ill and disabled children. Disability and Rehabilitation, 38(8), 761–767. https://doi.org/10.3109/09638288.2015.1060267
Wang, M., Turnbull, A. P., Summers, J. A., Little, T. D., Poston, D. J., Mannan, H., & Turnbull, R. (2004). Severity of disability and income as predictors of parents’ satisfaction with their family quality of life during early childhood years. Research and Practice for Persons with Severe Disabilities, 29(2), 82–94. https://doi.org/10.2511/rpsd.29.2.82
WHOQOL Group. (1998). Development of the World Health Organization WHOQOL–BREF quality of life assessment. Psychology Medical, 28(3), 551–558. https://doi.org/10.1017/s0033291798006667
Zeng, S., Hu, X., Zhao, H., & Stone-MacDonald, A. K. (2020). Examining the relationships of parental stress, family support and family quality of life: A structural equation modeling approach. Research in Developmental Disabilities, 96, Article 103523. https://doi.org/10.1016/j.ridd.2019.103523
Zhao, M., Fu, W., & Ai, J. (2021). The mediating role of social support in the relationship between parenting stress and resilience among Chinese parents of children with disability. Journal of Autism and Developmental Disorders, 51(10), 3412–3422. https://doi.org/10.1007/s10803-020-04806-8
The details about the publication policy, including copyright and licensing, are available at: