
Parents’ Strategies for Taking Care of Their Child with Disability: The Challenges of Being Parents of a Child with Cerebral Palsy in the Danish Social Welfare System
By: Louise Bøttcher and Jesper Dammeyer
References
- Ankeny, Elizabeth M., Julia Wilkins, and Jayne Spain. 2009. “Mothers’ Experiences of Transition Planning for Their Children with Disabilities.” TEACHING Exceptional Children 41(6): 28–36. DOI: 10.1177/004005990904100604
- Avieli, Hila, and Tova Band-Winterstein. 2017. “‘What Didn’t I Do for This Child?’: Parents’ Retrospective Construction of Their Child’s CP Diagnostic Process.” Journal of Developmental and Physical Disabilities 29: 385–405. DOI: 10.1007/s10882-016-9531-z
- Barnett, Douglas, Melissa Clements, Melissa Kaplan-Estrin, and Janice Fialka. 2003. “Building New Dreams. Supporting Parents’ Adaptation to Their Child with Special Needs.” Infants and Young Children 16(3): 184–200. DOI: 10.1097/00001163-200307000-00002
- Barutcu, Adnan, Saliha Barutcu, Safi Kolkiran, and Fatih Ozdener. 2021. “Evaluation of Anxiety, Depression and Burden on Caregivers of Children with Cerebral Palsy.” Developmental Neurorehabilitation 24(8): 555–560. DOI: 10.1080/17518423.2021.1917718
- Bax, Martin, Murray Goldstein, Peter Rosenbaum, Alan Leviton, and Nigel Paneth. 2005. “Proposed Definition and Classification of Cerebral Palsy, April 2005.” Developmental Medicine and Child Neurology 47(8): 571–576. DOI: 10.1017/s001216220500112x
- Bøttcher, Louise. 2019.
“The Cultural Nature of the Zone of Proximal Development: Young People with Severe Disabilities and Their Development of Independence.” In Cultural-Historical Approaches to Studying Learning and Development: Societal, Institutional and Personal Perspectives, edited by Anne Edwards, Marilyn Fleer and Louise Bøttcher, 69–83. New York: Springer. DOI: 10.1007/978-981-13-6826-4_5 - Bøttcher, Louise, and Jesper Dammeyer. 2016. Development and Learning of Young Children with Disabilities. A Vygotskian perspective. Springer. DOI: 10.1007/978-3-319-39114-4
- Brennan, Ciara, Rannveig Traustadottir, James Rice, and Peter Anderberg. 2016. “Negotiating Independence, Choice and Autonomy: Experiences of Parents Who Coordinate Personal Assistance on Behalf of Their Adult Son or Daughter.” Disability & Society 31(5): 604–621. DOI: 10.1080/09687599.2016.1188768
- Carona, Carlos, Carla Crespo, and Maria C. Canavarro. 2013. “Similarities amid the Difference: Caregiving Burden and Adaptation Outcomes in Dyad of Parents and Their Children with and without Cerebral Palsy.” Research in Developmental Disabilities 34: 882–893. DOI: 10.1016/j.ridd.2012.12.004
- Chapman, Madeleine. 2021. “Representation and Resistance: A Qualitative Study of Narratives of Deaf Cultural Identity.” Culture & Psychology 27(3): 374–391. DOI: 10.1177/1354067X21993794
- Dammeyer, Jesper. 2010. “Parents’ Management of the Development of Their Children with Disabilities: Incongruence between Psychological Development and Culture.” Outlines: Critical Practice Studies 1: 42–55. DOI: 10.7146/ocps.v12i1.2844
- Darnell, Whittney H., and Allison M. Scott. 2023. “Michelle P. Medicaid Waivers: Exploring Sources of Uncertainty for Parent Caregivers of Children with Disabilities.” Health Communication online ahead of print. DOI: 10.1080/10410236.2023.2214988
- Dickinson, Corrine, Jeanie Sheffield, Catherine Mak, Roslyn N. Boyd, and Koa Whittingham. 2022. “When a Baby Is Diagnosed at High Risk of Cerebral Palsy: Understanding and Meeting Parent Need.” Disability and Rehabilitation online ahead of print. DOI: 10.1080/09638288.2022.2144491
- Gindis, Boris. 1995. “Viewing the Disabled Child in Its Sociocultural Milieu: Vygotsky’s Quest.” School Psychology International 16(2): 155–166. DOI: 10.1177/0143034395162006
- Goodley, Dan. 2014. Dis/ability studies. Theorising Disabilism and Ablism. Oxon and New York: Routledge. DOI: 10.4324/9780203366974
- Graungaard, Anette H., and L. Skov. 2006. “Why Do We Need a Diagnosis? A Qualitative Study of Parents’ Experiences, Coping and Needs, When the Newborn Child Is Severely Disabled.” Child: Care, Health and Development 33(3): 296–307. DOI: 10.1111/j.1365-2214.2006.00666.x
- Greenspan, Miriam. 1998.
“‘Exceptional’ mothering in a ‘normal’ world.” In Mothering Against the Odds: Diverse Voices of Contemporary Mothers, edited by Cynthia Garcia, Janet L. Surrey and Kathy Weingarten, 37–60. London: Guilford Press. - Hedegaard, Mariane. 2009. “Children’s Development from a Cultural-Historical Approach: Children’s Activity in Everyday Local Settings as Foundation for Their Development.” Mind, Culture and Activity 16: 64–81. DOI: 10.1080/10749030802477374
- Krstic, Tatjana, Ljiljana Mihic, and Marina Oros. 2017. “Coping Strategies and Resolution in Mothers of Children with Cerebral Palsy.” Journal of Loss and Trauma 22(5): 385–395. DOI: 10.1080/15325024.2017.1297659
- Kurowska, Anna, Maria Kozka, and Anna Majda. 2021. “How to Cope with Stress? Determinants of Coping Strategies Used by Parents Raising Children with Intellectual Disabilities, Other Developmental Disorders and Typically Developing Children. A Cross-Sectional Study from Poland.” Journal of Mental Health Research in Intellectual Disabilities 14(1): 23–49. DOI: 10.1080/19315864.2020.1832166
- Lalvani, Priya. 2015. “Disability, Stigma and Otherness: Perspectives of Parents and Teachers.” International Journal of Disability, Development and Education 62(4): 379–393. DOI: 10.1080/1034912X.2015.1029877
- Michelsen, Susan, Esben M. Flach, Mette Madsen, and Peter Uldall. 2015. “Parental Social Consequences of Having a Child with Cerebral Palsy in Denmark.” Developmental Medicine & Child Neurology 57: 768–775. DOI: 10.1111/dmcn.12719
- Oliver, Michael. 1983. Social Work with Disabled People. MacMillan. DOI: 10.1007/978-1-349-86058-6
- Olsson, Malin B., and C. Philip Hwang. 2006. “Well-Being, Involvement in Paid Work and Division of Child Care in Parents of Children with Intellectual Disabilities in Sweden.” Journal of Intellectual Disabilities Research 50(12): 963–969. DOI: 10.1111/j.1365-2788.2006.00930.x
- Park, Eun-Young, and Su-Jung Nam. 2019. “Time Burden of Caring and Depression among Parents of Individual with Cerebral Palsy.” Disability & Rehabilitation 41(13): 1508–1513. DOI: 10.1080/09638288.2018.1432705
- Pedersen, Axel W., and Stein Kuhnle. 2017.
“The Nordic Welfare State Model. Introduction: The Concept of a ‘Nordic Model’.” In The Nordic Models in Political Science: Challenged, but Still Viable? edited by Oddbjørg P. Knutsen, 249–272. Bergen: Fagbokforlaget. - Pousada, Modesta, Noemi Guillamon, Eulalia Hernandez-Encuentra, Elena Munuz, Diego Redolar, Merce Boixados, and Beni Gomez-Zuniga. 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: 545–577. DOI: 10.1007/s10882-013-9332-6
- Ryan, Christian, and Elizabeth Quinlan. 2017. “Whoever Shouts the Loudest: Listening to Parents of Children with Disabilities.” Journal of Applied Research in Intellectual Disabilities 32(2): 203–214. DOI: 10.1111/jar.12354
- Ryan, Sara, and Kathrine Runswick-Cole. 2008. “Repositioning Mothers: Mothers, Disabled Children and Disability Studies.” Disability & Society 23(3): 199–210. DOI: 10.1080/09687590801953937
- Sauer, Janet S., and Priya Lalvani. 2017. “From Advocacy to Activism: Families, Communities, and Collective Change.” Journal of Policy and Practice in Intellectual Disabilities 14(1): 51–58. DOI: 10.1111/jppi.12219
- Shevell, Allison H., and Michael Shevell. 2013. “Doing the ‘Talk’: Disclosure of a Diagnosis of Cerebral Palsy.” Journal of Child Neurology 28(2): 230–235. DOI: 10.1177/0883073812471430
- Siddiqua, Ayesha, and Magdalena Janus. 2017. “Experiences of Parents of Children with Special Needs at School Entry: A Mixed Methods Approach.” Child: Care, Health and Development 43(4): 566–576. DOI: 10.1111/cch.12443
- Terry, Garath, Nikki Hayfield, Victoria Clarke, and Virginia Braun. 2017. Thematic Analysis. Sage. DOI: 10.4135/9781526405555
- Vygotsky, Lev S. 1993. The Collected Works of L.S. Vygotsky. Volume 2. The Fundamentals of Defectology. Plenum Press.
- Whittingham, Koa, Diana Wee, Matthew Sanders, and Roslyn Boyd. 2011. “Responding to the Challenges of Parenting a Child with Cerebral Palsy: A Focus Group.” Disability and Rehabilitation, 33(17–18): 1557–1567. DOI: 10.3109/09638288.2010.535090
- Wilgosh, Lorraine, Laura Nota, Kate Scorgie, and Salvatore Soresi. 2004. “Effective Life Management in Parents of Children with Disabilities: A Cross-National Extension.” International Journal for the Advancement of Counselling 26(3): 301–312. DOI: 10.1023/B:ADCO.0000035532.45759.fe
- Wise, Nancy J., and Patricia A. Gellasch. 2022. “Identification to Intervention: A Perspective from Parents of Children with Cerebral Palsy.” Nursing Research 71(6): 441–449. DOI: 10.1097/NNR.0000000000000619
DOI: https://doi.org/10.16993/sjdr.1154 | Journal eISSN: 1745-3011
Language: English
Page range: 1 - 14
Submitted on: May 15, 2024
Accepted on: Dec 6, 2024
Published on: Jan 9, 2025
Published by: Stockholm University Press
In partnership with: Paradigm Publishing Services
Keywords:
© 2025 Louise Bøttcher, Jesper Dammeyer, published by Stockholm University Press
This work is licensed under the Creative Commons Attribution 4.0 License.