Living with a disabled child. The multidimensional adaptation of parents
 
More details
Hide details
1
Instytut Pedagogiki, Wydział Pedagogiki i Psychologii, Uniwersytet Marii Curie-Skłodowskiej w Lublinie, ul. G. Narutowicza 12, 20-004 Lublin, Polska
 
 
Submission date: 2017-04-23
 
 
Final revision date: 2018-11-17
 
 
Acceptance date: 2018-11-17
 
 
Publication date: 2018-12-22
 
 
Corresponding author
Monika Parchomiuk   

Instytut Pedagogiki, Wydział Pedagogiki i Psychologii, Uniwersytet Marii Curie-Skłodowskiej w Lublinie, ul. G. Narutowicza 12, 20-004 Lublin, Polska
 
 
Wychowanie w Rodzinie 2018;17(1):305-322
 
KEYWORDS
ABSTRACT
Aim: The article has a review type. The analysis included in this study concerns the experiences of parents raising children with disabilities. Its purpose is to identify the characteristic aspects of adapting mothers and fathers to live with a handicapped child, which are different from traditional indicators. Methods: A systematic review of Polish and foreign literature describing the issues of parental experience in the situation of a child’s disability was carried out. Results: The study shows the dynamics and complexity of parenting, highlighted in the course of life. The article shows tendencies indicating positive changes occurring in the personal and social functioning of parents, but also confirming the presence of negative aspects. Conclusions: The paper presents the utility of applying the concept of transformation in explaining the essence of these complex experiences
 
REFERENCES (31)
1.
Bonsal A., Narrative transitions in views and behaviors of fathers parenting children with disabilities, „Journal of Family Studies” 2016, doi:10.1080/13229400.2015.1106336.
 
2.
Brown J.M., Recurrent grief in mothering a child with an intellectual disability to adulthood: grieving is the healing, „Child and Family Social Work” 2013, doi: 10.1111/cfs.12116.
 
3.
Cairns D., Tolson D., Darbyshire C., Brown J., The need for future alternatives: an investigation of the experiences and future of older parents caring for offspring with learning disabilities over a prolonged period of time, „British Journal of Learning Disabilities” 2012, nr 41.
 
4.
Carona C., Pereira M., Moreira H., Silva N., Canavarro M.C., The disability paradox revisited: quality of life and family caregiving in pediatric cerebral palsy, „Journal of Child and Family Studies” 2013, nr 223.
 
5.
Crown N.J., Parenting a child with disabilities: personal reflections, „Journal of Infant, Child, and Adolescent Psychotherapy” 2009, nr 8(1).
 
6.
Gallagher P.A., Fialka J., Rhodes C., Arceneaux C., Working with families: rethinking denials, „Young Exceptional Children” 2002, nr 5(2).
 
7.
Gray D.A., Ten years on: a longitudinal study of families of children with autism, „Journal of Intellectual and Developmental Disability” 2002, nr 27(3).
 
8.
Green S., „We’re tired, not sad”: Benefits and burdens of mothering a child with a disability, „Social Science and Medicine” 2007, nr 64.
 
9.
Gupta A., Singhal N., Positive perceptions in parents of children with disabilities, „Asia Pacific Disability Rehabilitation Journal” 2004, nr 15(1).
 
10.
Hauser-Cram P., Erickson Warfield M., Shonkoff J.P., Wyngaarden Krauss M., The development of children with disabilities and the adaptation of their parents: theoretical perspectives and empirical evidence, „Monographs of the Society for Research in Child Development” 2001, nr 66(3).
 
11.
Hornby G., A review of fathers’ accounts of their experiences of parenting children with disabilities. „Disability, Handicap and Society” 1992, nr 7(4).
 
12.
Karney P.M., Griffin T., Between joy and sorrow: being a parent of a child with developmental disability, „Journal of Advanced Nursing” 2001, nr 34(5).
 
13.
Larson E., Reframing the meaning of disability to families: the embrace of paradox, „Social Science and Medicine” 1998, nr 47(7).
 
14.
Lee Y-J., Park H.J., Recchia S.J., Embracing each other and growing together: redefining the meaning of caregiving a child with disabilities, „Journal of Child and Family Studies” 2015, nr 24.
 
15.
Lounds J., Mailick Seltzer M., Greenberg J.S., Shattuck P.T., Transition and change in adolescents and young adults with autism: longitudinal effects on maternal well-being, „American Journal on Mental Retardation” 2007, nr 112(6).
 
16.
Mitchell J.L., Lashewicz B., Generative fathering: a framework for enriching understandings of fathers raising children who have disability diagnoses, „Journal of Family Studies”, doi: 10.1080/13229400.2016.12127272016.
 
17.
Nelson Goff B.S., Monk K.J., Malone J., Staats N., Tanner A., Springer N.P., Comparing parents of children with Down syndrome at different life span stages, „Journal of Marriage and Family” 2016, nr 78(4).
 
18.
Nurullah A. S., „It’s really a roller coaster”: experience of parenting children with development al disabilities, „Marriage and Family Review” 2013, nr 49(5).
 
19.
O’Brien M., Ambiguous loss in families of children with autism spectrum disorders, „Family Relations” 2007, nr 56.
 
20.
O’Connell T., Halloran M., Doody O., Raising a child with disability and dealing with life events: A mother’s journey, „Journal of Intellectual Disabilities” 2013, [b.s.], doi: 10.1177/1744629513509794, Source: PubMed.
 
21.
Park H.J., Chung G.H., Multifaceted model of changes and adaptation among Korean mothers of children with disabilities, „Journal of Child and Family Studies” 2015, nr 24.
 
22.
Patric-Ott A., Ladd L.D., The blending of Boss’s concept of ambiguous loss and Olshansky’s concept of chronic sorrow: a case study of a family with a child who has significant disabilities, „Journal of Creativity in Mental Health” 2010, nr 5.
 
23.
Pryce L., Tweed A., Hilton A., Priest H.M., Tolerating uncertainty: perceptions of the future for ageing parent carers and their adult children with intellectual disabilities, „Journal of Applied Research in Intellectual Disabilities” 2015, doi: 10.1111/jar.12221.
 
24.
Riesz E.D., Loss and transitions: a 30-year perspective on life with a child who has Down Syndrome, „Journal of Loss and Trauma” 2004, nr 9(4).
 
25.
Scorgie K., Wilgosh L., Sobsey D., The experience of transformation in parents of children with disabilities: theoretical considerations, „Developmental Disabilities Bulletin” 2004, nr 32(1).
 
26.
Stainton T., Besser H., The positive impact of children with an intellectual disability on the family, „Journal of Intellectual and Developmental Disability” 2008, nr 23(1).
 
27.
Takataya K., Yamazaki Y., Mizuno E., Perceptions and feelings of fathers of children with Down Syndrome, „Archives of Psychiatric Nursing” 2016, nr 30.
 
28.
Tedeschi R.G., Calhoun L.G., Posttraumatic growth: conceptual foundations and empirical evidence, „Psychological Inquiry” 2004, nr 15(1).
 
29.
Trute B., Hiebert-Murphy D., Levine K., Parental appraisal of the family impact of childhood developmental disability: Times of sadness and times of joy, „Journal of Intellectual and Developmental Disability” 2007, nr 32(1).
 
30.
Whittingham K., Wee D., Sanders M.R., Boyd R., Sorrow, coping and resiliency: parents of children with cerebral palsy share their experiences, „Disability and Rehabilitation” 2013, nr 35(17).
 
31.
Żyta A., Przystosowywanie się do sytuacji niepełnosprawności swojego dziecka – doświadczenia matek i ojców dzieci z zespołem Downa, [w:] E. Zasępa (red.), Doświadczanie choroby i niepełnosprawności, Wydawnictwo Akademii Pedagogiki Specjalnej, Warszawa 2012.
 
eISSN:2300-5866
ISSN:2082-9019
Journals System - logo
Scroll to top