Perceived stress, ego-resiliency, and relational resources as predictors of psychological well-being in parents of children with Down syndrome
More details
Hide details
Submission date: 2016-07-09
Final revision date: 2016-10-10
Acceptance date: 2016-10-10
Online publication date: 2017-11-14
Publication date: 2017-06-23
Health Psychology Report 2018;6(1):50–59
The objective of the present study was to examine the role of perceived stress, ego-resiliency, and relational resources in maintaining psychological well-being in parents of children with Down syndrome, in particular in groups of mothers and fathers. Being a parent of a child with a disability is stressful, and it can be a burden. Despite these negative aspects of child-rearing, mothers and fathers are supported by their own resources and help from other people.

Participants and procedure
The study included 126 parents of children with Down syndrome (75 mothers and 51 fathers). All parents were married at the time of the study (i.e. the study did not involve single parents). The subjects completed questionnaires of psychological well-being, perceived stress, ego-resiliency, quality of marital relationship, and perceived social support.

Perceived stress proved to be a negative predictor (β = –.35) of psychological well-being both in the group of all parents and in groups of mothers and fathers. Ego-resiliency, perceived social support, and quality of marital relationship were positive predictors in the group of all parents, whereas ego-resiliency was a positive predictor (β = .29) of psychological well-being of fathers; perceived social support constituted a positive predictor (β = .25) in the group of mothers.

The results of the present study show the factors that have a significant effect on parental well-being and may, thus, be unfavourable (e.g. perceived stress) or favourable (e.g. perceived social support for mothers, ego-resiliency for fathers) for adaptation of parents of children with Down syndrome and their mental health. Particularly interesting are the differences in groups of mothers and fathers with regard to factors positively affecting their psychological well-being: relational resources (social support) are factors important for mothers, whereas psychological inner resources (ego-resiliency) are important for fathers. Further research on the topic is needed.
Bailey, D. B., Jr, Blasco, P. M., & Simeonsson, R. J. (1992). Needs expressed by mothers and fathers of young children with disabilities. American Journal of Mental Retardation, 97, 1–10.
Barnett, D., Clements, M., Kaplan-Estrin, M., & Fialka, J. (2003). Building new dreams: Supporting parents’ adaptation to their child with special needs. Infants and Young Children, 16, 184–200.
Baucom, D. H., Shoham, V., Mueser, K. T., Daiuto, A. D., & Stickle, T. R. (1998). Empirically supported couple and family interventions for marital distress and adult mental health problems. Journal of Consulting and Clinical Psychology, 66, 53–88.
Block, J. L., & Kremen, A. M. (1996). IQ and ego-resiliency: Conceptual and empirical connections and separateness. Journal of Personality and Social Psychology, 40, 349–361.
Bobkowicz-Lewartowska, L. (2013). Wybrane uwarunkowania jakości życia rodziców dzieci i młodzieży z zespołem Downa [Chosen conditions of quality of life of parents of children and youth with Down syndrome]. Warszawa: Difin.
Bower, A., Chant, D., & Chatwin, S. (1998). Hardiness in families with and without child with Down syndrome. Down Syndrome Research and Practice, 5, 71–77.
Buszman, K., & Przybyła-Basista, H. (2015). Polska adaptacja Wielowymiarowej Skali Spostrzeganego Wsparcia Społecznego (MSPSS) Gregorego Zimeta i współpracowników – prezentacja właściwości psychometrycznych [Polish adaptation of The Multidimensional Scale of Perceived Social Support by Gregor Zimet et al. – presentation of psychometric properties] (paper submitted for publication).
Carr, A. (2011). Positive psychology: the science of happiness and human strengths. New York: Routledge Taylor and Francis Group.
Cieślak, K. (1989). Polska wersja skali G.B. Spaniera służącej do pomiaru jakości związku małżeńskiego (DAS) [Polish version of G.B. Spanier’s scale of marital quality (DAS)]. Przegląd Psychologiczny, 32, 1041–1049.
Cohen, S., Kamarck, T., & Mermelstein, R. (1983). A global measure of perceived stress. Journal of Health and Social Behavior, 24, 385–396.
Cunningham, C. (1996). Families of children with Down syndrome. Down Syndrome Research and Practice, 4, 87–95.
Cuskelly, M., Hauser-Cram, P., & Van Riper, M. (2009). Families of children with Down syndrome: What we know and what we need to know. Down Syndrome Research and Practice, 12, 105–113. DOI: 10.3104/reviews/2079.
Dąbrowska, A. (2010). Sprawowanie opieki nad dorastającym dzieckiem z zespołem Downa a stres i poczucie koherencji u rodziców [Caring for a growing child with Down syndrome – parents’ stress and sense of coherence]. In B. Kaczmarek (ed.), Trudna dorosłość osób z zespołem Downa: jak możemy wspomóc? [Difficult adulthood of people with Down syndrome: how can we support it?] (pp. 121–133). Kraków: Oficyna Wydawnicza „Impuls”.
Dolińska-Zygmunt, G., & Włodarczyk, M. (2011). Ego resiliency and the condition of health. Zdrowie Publiczne, 121, 66–70.
Fidler, D. J., Hodapp, R. M., & Dykens, E. M. (2000). Stress in families of young children with Down syndrome, Williams syndrome, and Smith-Magenis syndrome. Early Education and Development, 11, 395–406.
Garcia-Tunon, A. (1997). A comparison of the influence of maternal empathy, child’s independence skills, and perceived social support, on parenting practices of mothers of preschool children with Down syndrome and mothers of preschool children without disabilities. Humanities and Social Sciences, 58 (6-A), 2159.
Greenberg, J. S, Mailick Seltzer, M., Wyngaarden Krauss M., Chou, R., & Hong, J. (2004). The effect of quality of the relationship between mothers and adult children with schizophrenia, autism, or Down syndrome on maternal well-being: The mediating role of optimism. American Journal of Orthopsychiatry, 74, 14–25.
Hallberg, U. (2014). Differences in health and well-being of parents of children with disabilities. International Journal of Qualitative Studies on Health and Well-being, 9, 24343.
Hartley, S. L., Mailick Seltzer, M., Head, L., & Abbeduto, L. (2012). Psychological well-being in fathers of adolescents and young adults with Down syndrome, Fragile X Syndrome, and autism. Family Relations, 61, 327–342.
Hedov, G., Anneren, G., & Wikblad, K. (2002). Swedish parents of children with Down’s syndrome. Parental stress and sense of coherence in relation to employment rate and time spent in child care. Scandinavian Journal of Caring Sciences, 16, 424–430.
Hills, P., & Argyle, M. (2002). The Oxford Happiness Questionnaire: a compact scale for the measurement of psychological well-being. Personality and Individual Differences, 33, 1073–1082.
Hodapp, R., Ly, T., Fidler, D., & Ricci, L. (2001). Less stress, more rewarding: Parenting children with Down’s syndrome. Parenting: Science and Practice, 1, 317–337.
Hodapp, R. (2007). Families of persons with Down syndrome: New perspectives, findings, and research and service needs. Mental Retardation and Developmental Disabilities Research Reviews, 13, 279–287.
Joosa, E., & Berthelsen, D. (2006) Parenting a child with Down syndrome: A phenomenographic study. Journal of Developmental Disabilities, 12, 1–14.
Juczyński, Z., & Ogińska-Bulik, N. (2009). Narzędzia pomiaru stresu i radzenia sobie ze stresem [The measures of stress and coping with stress]. Warszawa: Pracownia Testów Psychologicznych.
Kandel, I., & Merrick, J. (2003). The birth of a child with disability. Coping by Barents and siblings. The Scientific World Journal, 3, 741–750.
Keller, D., & Honig, A. (2004). Maternal and paternal stress in families with school-aged children with disabilities. American Journal of Orthopsychiatry, 74, 337–348.
Kersh, J., Hedvat, T. T., Hauser-Cram, P., & Warfield, M. E. (2006). The contribution of marital quality to the well-being of parents of children with developmental disabilities. Journal of Intellectual Disability Research, 50, 883–893.
King, G. A., Zwaigenbaum, L., King, S., Baxter, D., Rosenbaum, P., & Bates, A. (2005). A qualitative investigation of changes in the belief systems of families of children with autism or Down syndrome. Child: Care, Health and Development, 32, 353–69.
Kołodziej, A., & Przybyła-Basista, H. (2012). Rola resiliency w pokonywaniu kryzysu rozwodowego: analiza teoretyczna i sposoby pomiaru [The role of resiliency in defeating divorce crisis: theoretical analysis and techniques of measure]. Ist International Interdisciplinary Conference: Health and Mental Resilience, Krakow, 20–21 October, 2012, Institute of Applied Psychology, Jagiellonian University (polska adaptacja Kwestionariusza J. Blocka i A. M. Kremena Ego-Resiliency Scale) [Polish adaptation of J. Block’s and A. M. Kremen’s Questionnaire] (unpublished paper).
Kołodziej, A., & Przybyła-Basista, H. (2013). Oksfordzki Kwestionariusz Szczęścia – polska adaptacja narzędzia do badania dobrostanu: wyniki wstępne [Oxford Happiness Questionnaire – Polish adaptation of well-being measure]. Ist International Conference on Positive Psychology in Poland (poster). Sopot: SWPS Wydział Zamiejscowy (unpublished paper).
Kózka, A., & Przybyła-Basista, H. (2016a). The relationships between perceived stress and psychological well-being among mothers and fathers of children with Down syndrome. The New Educational Review, 44, 285–294. doi: 10.15804/tner.2016.44.2.23.
Kózka, A., & Przybyła-Basista, H. (2016b). Wsparcie społeczne jako czynnik ochronny dla rodziców dzieci z zespołem Downa [Social support as a protection of parents of children with Down syndrome]. Społeczeństwo i Edukacja, 20, 139–150.
Kulik, M., & Otrębski, W. (2011). Sytuacja rodziny z dzieckiem niepełnosprawnym w wyniku choroby genetycznej [The situation of parents with disabled child with genetic disorder]. In H. Liberska (ed.), Rodzina z dzieckiem niepełnosprawnym: możliwości i ograniczenia rozwoju [Family with a disabled child: possibilities and limitations of development] (pp. 129–150). Warszawa: Difin.
Lazarus, R. S., & Folkman, S. (1987). Transactional theory on emotions and coping. European Journal of Personality, 1, 141–169.
Lam, L. W., & Mackenzie, A. E. (2002). Coping with a child with Down syndrome: the experiences of mothers in Hong Kong. Qualitative Health Research, 12, 223–237.
Laws, G., & Millward, L. (2001). Predicting parents’ satisfaction with the education of their child with Down’s syndrome. Educational Research, 43, 209–226.
Liberska, H., & Rzepa, M. (2011). Rozwój indywidualny rodziców w systemie rodziny z dzieckiem z zespołem Downa [Parents’ individual development in system of family of a child with Down syndrome]. In H. Liberska (ed.), Rodzina z dzieckiem niepełnosprawnym: możliwości i ograniczenia rozwoju [Family with disabled child: possibilities and limitations of development] (pp. 197–216). Warszawa: Difin.
Malhotra, S., Khan, W., & Bhatia, M. S. (2012). Quality of life of parents having children with developmental disabilities. Delhi Psychiatry Journal, 15, 171–176.
Marchal, J., Maurice-Stam, H., Hatzmann, J., von Trotsenburg, A., & Grootenhuis, M. (2013). Health related quality of life in parents of six to eight year old children with Down syndrome. Research in Developmental Disabilities, 34, 4239–4247.
Mikyong, S., Besser, L., Kucik, J., Chengxing, L., Siffel, C., & Correa, A. (2009). Prevalence of Down syndrome among children and adolescents in 10 Regions of the United States. Pediatrics, 124, 1565–1571.
Neely-Barnes, S., & Dia, D. A. (2008). Families of children with disabilities: A review of literature and recommendations for interventions. Journal of Early and Intensive Behavior Intervention, 5, 93–107.
Pisula, E. (2007a). Rodzice i rodzeństwo dzieci z zaburzeniami rozwoju [Parents and siblings of children with developmental disorders]. Warszawa: Wydawnictwa Uniwersytetu Warszawskiego.
Pisula, E. (2007b). A comparative study of stress profiles in mothers of children with autism and those of children with Down’s syndrome. Journal of Applied Research in Intellectual Disabilities, 20, 274–278.
Przybyła-Basista, H., & Kózka, A. (2016). Doświadczenie rodzicielstwa przez matki i ojców dzieci z zespołem Downa [Parenthood of mothers and fathers of children with Down syndrome]. In K. Mariańczyk & W. Otrębski (eds.), Przepis na rehabilitację, tom II Dzieci i młodzież z niepełnosprawnością [Recipe for rehabilitation, vol. II. Children and youth with disability]. Gdańsk: Harmonia (in print).
Ricci, L. A., & Hodapp, R. M. (2003). Fathers of children with Down’s syndrome versus other types of intellectual disability: Perceptions, stress and involvement. Journal of Intellectual Disability Research, 47, 273–284.
Richman, D. M., Belmont, J. M., Myungjin, K., Slavin, C. B., & Hayner, A. K. (2009). Parenting stress in families of children with Cornelia de Lange syndrome and Down syndrome. Journal of Developmental and Physical Disabilities, 21, 537–553.
Sanders, J., & Morgan, S. (1997). Family stress and adjustment as perceived by parents of children with autism or Down syndrome: Implications for interventions. Child and Family Behavior Therapy, 19, 15–32.
Schuh, M., Hagner, D., Dillon, A., & Dixon, B. (2015). The outcomes of family and consumer leadership education: Creating positive change in disability policy and practice. Health Psychology Report, 3, 115–122.
Spanier, G. (1976). Measuring dyadic adjustment: New scales for assessing the quality of marriage and similar dyads. Journal of Marriage and the Family, 38, 15–28.
StatSoft (2006). Elektroniczny Podręcznik Statystyki PL [Electronic Statistics Textbook]. Krakow, WEB: http://www.statsoft.pl/textboo....
Suarez, L. M., & Baker, B. L. (1997). Child externalizing behavior and parents’ stress: the role of social support. Family Relations, 47, 373–381.
Turbiville, V., & Marquise, J. (2001). Fathers participation in early education programs. Topics in Early Childhood Special Education, 21, 223–231.
Urbano, R. C., & Hodapp, R. M. (2007). Divorce in families of children with Down syndrome: A population-based study. American Journal on Mental Retardation, 112, 261–274.
West, A. (1998). The piloting of a group for the fathers of children with Down syndrome. Child: Care, Health and Development, 24, 289–294.
Van Riper, M. (2007). Families of children with Down syndrome: responding to change in plans with resilience. Journal of Pediatric Nursing, 22, 116–128.
Van Riper, M. (1999). Maternal perceptions of family-provider relationships and well-being in families of children with Down syndrome. Research in Nursing and Health, 22, 357–368.
Ylvén, R., Björck-Åkesson, E., & Granlund, M. (2006). Literature review of positive functioning in families with children with a disability. Journal of Policy and Practice in Intellectual Disabilities, 3, 253–270.
Zimet, G., Dahlem, N., Zimet, S. G., & Harley, G. K. (1988). The mulitidimensional scale of perceived social support. Journal of Personality Assessment, 52, 30–41.