Clinical Psychology and Special Education
2022. Vol. 11, no. 4, 1–29
doi:10.17759/cpse.2022110401
ISSN: 2304-0394 (online)
Parental Stress and Bringing up a Child with Cerebral Palsy: A Foreign Studies Review
Abstract
Raising a child with cerebral palsy contains difficult stress, which negatively affects everyone who is involved in this process. In native psychology, this problem is described by I.U. Levchenko, V.V. Tkacheva, V.A. Vishnevsky, T.N. Volkovskaya. However, there is a lack of research on stress for people, who are raising a child with cerebral palsy. The purpose of this review is to learn about foreign studies on stress for people, who are raising children with cerebral palsy. The article describes R. Abidin's current leading model for parental stress. The connection between raising a child with cerebral palsy and parental stress is considered based on R. Abidin's model. Particularly, the results of studies describe specific aspects of parental stress: lack of knowledge on special child care, not an equal assignment for parental responsibilities, separation anxiety, parent's health problems, social isolation, and guilt. Based on the analysis, we can conclude that raising a child with cerebral palsy is associated with a higher level of stress than raising children without disabilities. This information can be used both in similar studies for a domestic sample and in active programs to reduce parental stress.
General Information
Keywords: parental stress; children; cerebral palsy; clinical psychology; disability
Journal rubric: Theoretical Research
Article type: scientific article
DOI: https://doi.org/10.17759/cpse.2022110401
Received: 25.10.2021
Accepted:
For citation: Kim K.A., Kadirov R.V. Parental Stress and Bringing up a Child with Cerebral Palsy: A Foreign Studies Review [Elektronnyi resurs]. Klinicheskaia i spetsial'naia psikhologiia = Clinical Psychology and Special Education, 2022. Vol. 11, no. 4, pp. 1–29. DOI: 10.17759/cpse.2022110401. (In Russ., аbstr. in Engl.)
References
- Batysheva T.T., Bykova O.V., Vinogradov A.V. Detskii tserebral'nyi paralich – sovremennye predstavleniya o probleme (obzor literatury) [Cerebral palsy – modern ideas about the problem (literature review)]. Rossiiskii meditsinskii zhurnal = Russian Medical Journal, 2012, no. 8, pp. 401–405. (In Russ.).
- Zdravookhranenie v Rossii: statisticheskii sbornik [Health care in Russia: statistical collection]. Moscow: Rosstat. 2019. 170 p.
- Savenysheva S.S., Anikina V.O., Meldo E.V. Faktory roditel'skogo stressa materei detei rannego i doshkol'nogo vozrasta: analiz zarubezhnykh issledovanii [Factors of parenting stress in mothers of young and preschool children: An analysis of foreign studies]. Sovremennaya zarubezhnaya psikhologiya = Journal of Modern Foreign Psychology, 2019. vol. 8, no. 4, pp. 38–48. DOI: 10.17759/jmfp.2019080404. (In Russ., аbstr. in Engl.)
- Abidin R.R. The parenting Stress Index. 3rd ed. Odessa, FL: Psychological Assessment Resources, 1995. 76 p.
- Amiri E., Khiavi F.F., Malehi A.S. Social support and quality of life among mothers of children with cerebral palsy: A case-control study. International Journal of Review in Life Sciences, 2015, vol. 5, no. 10, pp. 1696–1704. DOI: 10.1590/1982-0194201500029
- Badia M., Orgaz B.M., Gomez V.M. Do environmental barriers affect the parent-reported quality of life of children and adolescents with cerebral palsy? Research in Developmental Disabilities, 2016, vol. 49–50, pp. 312–321. DOI: 10.1016/j.ridd.2015.12.011
- Bandura A. Human agency in social cognitive theory. American Psychologist, 1989, vol. 44 (9), pp. 1175–1184. DOI: 10.1037/0003-066x.44.9.1175
- Bargh J.A., Morsella E. The unconscious mind. Perspectives on Psychological Science, 2008, vol. 3, no. 1, pp. 73–79. DOI: 10.1111/j.1745-6916.2008.00064.x
- Bartlett D.J., Galuppi B., Palisano R.J. Consensus classifications of gross motor, manual ability, and communication function classification systems between therapists and parents of children with cerebral palsy. Developmental Medicine and Child Neurology, 2016, vol. 58, no. 1, pp. 98–99. DOI: 10.1111/dmcn.12933
- Baylis M. 24-Hour postural care and use of sleep systems in cerebral palsy. Paediatrics and Child Health, 2020, vol. 30, no. 8, pp. 296–302. DOI: 10.1016/j.paed.2020.05.005
- Beck A.R., Rush A.J., Shaw B. et al. Cognitive Therapy of Depression. New York: Guilford Press, 1979.
- Bertule D., Vetra A. Predictors of needs for community and financial resources for families of pre-school children with cerebral palsy // SHS Web of Conferences. 2016. Vol. 30. Article 00041. DOI: 10.1051/shsconf/20163000041
- Bertule D., Vetra A. The family needs of parents of preschool children with cerebral palsy: the impact of child's gross motor and communications functions. Medicina (Kaunas), 2014. vol. 50, no. 6. pp. 323–328. DOI: 10.1016/j.medici.2014.11.005
- Brannen С., Petite K. An alternative framework for understanding women's caregiving stress: A qualitative application of the ways of coping model. Journal of Health Psychology, 2008, vol. 13, no. 3, pp. 355–365. DOI: 10.1177/1359105307088140
- Brehaut J.C., Kohen D.E., Raina P. et al. The health of primary caregivers of children with cerebral palsy: How does it compare with that of other Canadian caregivers? Pediatrics, 2004, vol. 114, no. 2, e182–191. DOI: 10.1542/peds.114.2.e182
- Butcher P.R., Wind T., Bouma A. Parenting stress in mothers and fathers of a child with a hemiparesis: Sources of stress, intervening factors and long-term expressions of stress. Child: Care, Health and Development, 2008, vol. 34, no. 4, pp. 530–541. DOI: 10.1111/j.1365-2214.2008.00842.x
- Cho K. S., Hong E. J. A path analysis of the variables related to the quality of life of mothers with disabled children in Korea. Stress and Health, 2013, vol. 29, no. 3, pp. 229–239. DOI: 10.1002/smi.2457
- Crnic K., Greenberg M. Minor parenting stresses with young children. Child Development, 1990, vol. 61, no. 5, pp. 1628–1637. DOI: 10.1111/j.1467–8624.1990.tb02889.x
- Da Costa Cunha K., Pontes F.A.R., da Costa Silva S.S. Parenting stress and motor function of children with cerebral palsy, Psychology, 2017, vol. 8, pp. 44–58. DOI: 10.4236/psych.2017.81004
- Davis J.L., Green J.D., Reed A. Interdependence with the environment: Commitment, interconnectedness, and environmental behavior. Journal of Environmental Psychology, 2009, vol. 29, no. 2, pp. 173–180. DOI: 10.1016/j.jenvp.2008.11.001
- Deater‐Deckard K. Parenting stress and child adjustment: Some old hypotheses and new questions. Clinical Psychology: Science and Practice, 1998, vol. 5, no. 3. P. 314–332. DOI: 10.1111/J.1468-2850.1998.TB00152.X
- D'Zurilla T.J., Goldfried M.R. Problem solving and behavior modification. Journal of Abnormal Psychology, 1971, vol. 78, no. 1. P. 107–126. DOI: 10.1037/h0031360
- Elad D., Barak S., Eisenstein E. et al. Discrepancies between mothers and clinicians in assessing functional capabilities and performance of children with cerebral palsy. Research in Developmental Disabilities, 2013, vol. 34, no. 11. P. 3746–3753. DOI: 10.1016/j.ridd.2013.07.036
- Ellis A. Reason and emotion in psychotherapy. New York: Lule Stuart, 1962.
- Estes A., Munson J., Dawson G. et al. Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism, 2009, vol. 13, no. 4, pp. 375–387. DOI: 10.1177/1362361309105658
- Fairfax A., Brehaut J., Colman I. et al. A systematic review of the association between coping strategies and quality of life among caregivers of children with chronic illness and/or disability. BMC Pediatrics, 2019, vol. 19, no. 1, article 215. DOI: 10.1186/s12887-019-1587-3.
- Farajzadeh A., Dehghanizadeh M., Maroufizadeh S. et al. Predictors of mental health among parents of children with cerebral palsy during the COVID-19 pandemic in Iran: A web-based cross-sectional study. Research in Developmental Disabilities, 2021, vol. 112, article 103890. DOI: 10.1016/j.ridd.2021.103890
- Findler L. The experience of stress and personal growth among grandparents of children with and without intellectual disability. Intellectual and Developmental Disabilities, 2014, vol. 52, no. 1. pp. 32–48. DOI: 10.1352/1934-9556-52.1.32
- Freeborn D., Knafl K. Growing up with cerebral palsy: Perceptions of the influence of family. Child: Care Health Development, 2014, vol. 40, no. 5, pp. 671–679. DOI: 10.1111/cch.12113.
- Freedman B.H., Kalb L.G., Zablotsky B. et al. Relationship status among parents of children with autism spectrum disorders: A population-based study. Journal of Autism and Developmental Disorders, 2011, vol. 42, no. 4, pp. 539–548. DOI: 10.1007/s10803-011-1269-y
- Fung B.K.K., Ho S.M.Y., Fung A.S.M. et al. The development of a strength-focused mutual support group for caretakers of children with cerebral palsy. East Asian Archives of Psychiatry, 2011. vol. 21, no. 2. P. 64–72.
- Gardner J.E., Scherman A., Efthimiadis M.S. et al. Panamanian grandmothers' family relationships and adjustment to having a grandchild with a disability. The International Journal of Aging & Human Development, 2004, vol. 59, no. 4, pp. 305–320. DOI: 10.2190/L60R-MF1N-98AV-TMV3
- Glenn S., Cunningham C., Poole H. et al. Maternal parenting stress and its correlates in families with a young child with cerebral palsy. Child: Care, Health and Development, 2008, vol. 35, no. 1, pp. 71–78. DOI: 10.1111/j.1365-2214.2008.00891.x
- Guyard A., Michelsen S.I., Arnaud C. et al. Family adaptation to cerebral palsy in adolescents: A European multicenter study. Research in Developmental Disabilities, 2017, vol. 61, pp. 138–150. DOI: 10.1016/j.ridd.2016.11.010.
- Ha J.H., Yoo H.J., Cho I.H. et al. Psychiatric comorbidity assessed in Korean children and adolescents who screen positive for internet addiction. The Journal of Clinical Psychiatry, 2006, vol. 67, no. 5, pp. 821–826. DOI: 10.4088/jcp.v67n0517
- Haley J. Problem solving therapy. San Francisco: Jossey-Bass, 1976.
- Harper A., Dyches T.T., Harper J. et al. Respite care, marital quality, and stress in parents of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 2013, vol. 43, pp. 2604–2616. DOI: 10.1007/s10803-013-1812-0
- Hartley S.L., Barker E.T., Seltzer M.M. et al. The relative risk and timing of divorce in families of children with an autism spectrum disorder. Journal of Family Psychology, 2010, vol. 24, no. 4, pp. 449–457. DOI: 10.1037/a0019847
- Hayles E., Harvey D., Plummer D. et al. Parents’ experiences of health care for their children with cerebral palsy. Qualitative Health Research, 2015, vol. 25, no. 8, pp. 1139–1154. DOI: 10.1177/1049732315570122
- Henggeler S.W., Lee T. Multisystemic treatment of serious clinical problems. In A.E. Kazdin, J.R. Weisz (eds.), Evidence-based psychotherapies for children and adolescents. New York: Guilford Press, 2003. pp. 301–324.
- Hoffman C.D., Sweeney D.P., Hodge D. et al. Parenting stress and closeness: Mothers of typically developing children and mothers of children with autism. Focus on Autism and Other Developmental Disabilities, 2009, vol. 24, no. 3, pp. 178–187 DOI: 10.1177/1088357609338715
- Huang C.Y., Costeines J., Ayala C. Erratum to: Parenting stress, social support, and depression for ethnic minority adolescent mothers: Impact on child development. Journal of Child and Family Studies, 2014, vol. 23, no. 1, pp. 255–262. DOI: 10.1007/s10826-013-9807-1
- Huang Y.P., Kellett U.M., St. John W. Being concerned: Caregiving for Taiwanese mothers of a child with cerebral palsy. Journal of Clinical Nursing, 2012, vol. 21, no.1–2, pp. 189–197. DOI: 10.1111/j.1365-2702.2011.03741.x
- Huang Y.P., Kellett U.M., St. John W. Cerebral palsy: Experiences of mothers after learning their child's diagnosis. Journal of Advanced Nursing, 2010, vol. 66, no. 6. pp. 1213–1221 DOI: 10.1111/j.1365-2648.2010.05270.x
- Ismail A., Sk Abd Razak R., Suddin L.S. et al. The economic burden and determinant factors of parents/caregivers of children with cerebral palsy in Malaysia: A mixed methods study. International Journal of Environmental Research and Public Health, 2022, vol. 19, no. 1, article 475. DOI: 10.3390/ijerph19010475.
- Kersh J., Hedvat T.T., Hauser-Cram P. et al. The contribution of marital quality to the well-being of parents of children with developmental disabilities. Journal of Intellectual Disability Research, 2007, vol. 50, pp. 883–893. DOI: 10.1111/j.1365-2788.2006.00906.x
- Ketelaar M., Volman M.J.M., Gorter J.W. et al. Stress in parents of children with cerebral palsy: what sources of stress are we talking about? Child: Care, Health and Development, 2008, vol. 34, no. 6, pp. 825–829. DOI: 10.1111/j.1365-2214.2008.00876.x
- Kiser L.J., Backer P.M., Winkles J. et al. Strengthening Family Coping Resources (SFCR): Practice-based evidence for a promising trauma intervention. Couple and Family Psychology: Research and Practice, 2015, vol. 4, no. 1, pp. 49–59. DOI: 10.1037/cfp0000034
- Knussen C., Sloper P. Stress in families of children with disability: A review of risk and resistance factors, Journal of Mental Health, 1992, vol. 1, no. 3, pp. 241–256. DOI: 10.3109/09638239209005457
- Law E., Fisher E., Eccleston C., Palermo T.M. Psychological interventions for parents of children and adolescents with chronic illness. The Cochrane Database of Systematic Reviews, 2019, no. 3, article CD009660. DOI: 10.1002/14651858.CD009660.pub4
- Lazarus R.S. From psychological stress to the emotions: A history of changing outlooks. Annual Review of Psychology, 1993, vol. 44, pp. 1–21. DOI: 10.1146/annurev.ps.44.020193.000245
- Lee M.H., Matthews A.K., Park C.G. et al. Relationships among parenting stress, health-promoting behaviors, and health-related quality of life in Korean mothers of children with cerebral palsy. Research in Nursing and Health, 2020, vol. 43, no. 6, pp. 590–601. DOI: 10.1002/nur.22074
- Lewin S., Munabi-Babigumira S., Glenton C. et al. Lay health workers in primary and community health care for maternal and child health and the management of infectious diseases. The Cochrane Database of Systematic Reviews, 2010, vol. 3, article CD004015. DOI: 10.1002/14651858.CD004015.pub3
- Madi S.M., Mandy A., Aranda K. The perception of disability among mothers living with a child with cerebral palsy in Saudi Arabia. Global Qualitative Nursing Research, 2019, vol. 6, pp. 1–11. DOI: 10.1177/2333393619844096
- Marks S.U., Matson A., Barraza L. The impact of siblings with disabilities on their brothers and sisters pursuing a career in special education. Research and Practice for Persons with Severe Disabilities, 2005, vol. 30, no. 4, pp. 205–218. DOI: 10.2511/rpsd.30.4.205
- Marriner A.M., Pestell C., Bayliss D.M. et al. Confirmatory factor analysis of the Sleep Disturbance Scale for Children (SDSC) in a clinical sample of children and adolescents. Journal of Sleep Research, 2017, vol. 26, no. 5, pp. 587–594. DOI: 10.1111/jsr.12526
- McDermott S., Coker A.L., Mani S. et al. A population-based analysis of behavior problems in children with cerebral palsy. Journal of Pediatric Psychology, 1996, vol. 21, no. 3, pp. 447–463. DOI: 10.1093/jpepsy/21.3.447
- McGuire D.O., Tian L.H., Yeargin-Allsopp M. et al. Prevalence of cerebral palsy, intellectual disability, hearing loss, and blindness, National Health Interview survey, 2009–2016. Disability and Health Journal, 2019, vol. 12, no. 3, pp. 443–451. DOI: 10.1016/j.dhjo.2019.01.005
- Meyer S., Raikes H.A., Virmani E.A. et al. Parent emotion representations and the socialization of emotion regulation in the family. International Journal of Behavioral Development, 2014, vol. 38, no. 2. P. 164–173. DOI: 10.1177/0165025413519014
- Minuchin S. Families and Family Therapy. Massachusetts: Harvard University Press, 1974. 280 p.
- Miodrag N., Hodapp R.M. Chronic stress and health among parents of children with intellectual and developmental disabilities . Current Opinion in Psychiatry, vol. 23, no. 5, pp. 407–411. DOI: 10.1097/YCO.0b013e32833a8796
- Mokhtari M., Abootorabi F. Lived experiences of mothers of children with cerebral palsy in Iran: A phenomenological study. Child & Youth Services, 2019, vol. 40, no. 3, pp. 224–244. DOI: 10.1080/0145935X.2019.1594757
- Nyante G.G., Carpenter C. The experience of carers of children with cerebral palsy living in rural areas of Ghana who have received no rehabilitation services: A qualitative study. Child: Care, Health and Development, 2019, vol. 45, no. 6, pp. 815–822. DOI: 10.1111/cch.12706
- Ostberg M., Hagekull B. A structural modeling approach to the understanding of parenting stress. Journal of Clinical Child Psychology, 2000, vol. 29, no. 4, pp. 615–625. DOI: 10.1207/S15374424JCCP2904_13
- Palermo T.M. Impact of recurrent and chronic pain on child and family daily functioning: A critical review of the literature. Journal Developmental Behavioral Pediatrics, 2000, vol. 21, no. 1, pp. 58–69. DOI: 10.1097/00004703-200002000-00011
- Park E.Y. Relationship among gross motor function, parenting stress, sense of control, and depression in mothers of children with cerebral palsy. International Journal of Environmental Research and Public Health, 2021, vol. 18, no.17, article 9285. DOI: 10.3390/ijerph18179285
- Parkes A., Sweeting H., Wight D. Parenting stress and parent support among mothers with high and low education. Journal of Family Psychology, 2015, vol. 29, no. 6, pp. 907–918. DOI: 10.1037/fam0000129
- Parkes J., Caravale B., Marcelli M. et al. Parenting stress and children with cerebral palsy: A European cross-sectional survey. Developmental Medicine and Child Neurology, 2011, vol. 53, no. 9, pp. 815–821. DOI: 10.1111/j.1469-8749.2011.04014.x
- Pennington L., Dave M., Rudd J. et al. Communication disorders in young children with cerebral palsy. Developmental Medicine and Child Neurology, 2020, vol. 62, no. 10, pp. 1161–1169. DOI: 10.1111/dmcn.14635
- Perry A. A model of stress in families of children with developmental disabilities: Clinical and research applications. Journal on Developmental Disabilities, 2005, vol. 11, no. 1, pp. 1–15.
- Petalas M.A., Hastings R.P., Nash S.et al. Emotional and behavioral adjustment in siblings of children with intellectual disability with and without autism. Autism, 2009, vol. 13, no. 5, pp. 471–483. DOI: 10.1177/1362361309335721
- Plant K.M., Sanders M.R. Predictors of care‐giver stress in families of preschool‐aged children with developmental disabilities . Journal of Intellectual Disability Research, 2007, vol. 51, pp. 109–124. DOI: 10.1111/j.1365-2788.2006.00829.x
- Reid A., Imrie H., Brouwer E. et al. «If I knew then what I know now»: Parents’ reflections on raising a child with cerebral palsy. Physical and Occupational Therapy in Pediatrics, 2011, vol. 31, no. 2, pp. 169–183. DOI: 10.3109/01942638.2010.540311
- Rudebeck S.R. The psychological experience of children with cerebral palsy. Pediatrics and Child Health, 2020, vol. 30, no. 8, pp. 283–287. DOI: 10.1016/j.paed.2020. 05.003
- Samadi S.A., McConkey R., Bunting B. Parental wellbeing of Iranian families with children who have developmental disabilities. Research in Developmental Disabilities, 2014, vol. 35, no. 7, pp. 1639–1647. DOI: 10.1016/j.ridd.2014.04.001
- Savage E., Beirne P.V., Ni Chroinin M. et al. Self-management education for cystic fibrosis. The Cochrane Database of Systematic Reviews, 2011, no. 7, article CD007641. DOI: 10.1002/14651858.CD007641.pub2
- Selye H. Handbook on Stress and Anxiety. In I.L. Kutash, L.B. Schlesinger (eds.). San Francisco, CA: Jossey-Bass, 1980. P. 127–143.
- Singogo C., Mweshi M., Rhoda A. Challenges experienced by mothers caring for children with cerebral palsy in Zambia. The South African Journal of Physiotherapy, 2015, vol. 71, no. 1. Article 274. DOI: 10.4102/sajp.v71i1.274
- Sipal R.F., Schuengel C., Voorman J.M. et al. Course of behavior problems of children with cerebral palsy: the role of parental stress and support // Child: Care, Health and Development. 2010. Vol. 36. P. 74–84. DOI: 10.1111/j.1365-2214.2009.01004.x
- Skinner B.F. Science and Human Behaviour. Toronto: The Macmillan Company, 1953. 461 p.
- Smith M., Blamires J. Mothers' experience of having a child with cerebral palsy. A systematic review. Journal of Pediatric Nursing, 2022, vol. 64. pp. 64–73. DOI: 10.1016/j.pedn.2022.01.014
- Vadivelan K., Sekar P., Sruthi S.S. et al. Burden of caregivers of children with cerebral palsy: An intersectional analysis of gender, poverty, stigma, and public policy. BMC Public Health, 2020, vol. 20, no.1, article 645. DOI: 10.1186/s12889-020-08808-0
- Veisson M. Depression symptoms and emotional states in parents of disabled and non-disabled children. Social Behavior and Personality, 1999, vol. 27, no. 1, pp. 87–98. DOI: 10.2224/sbp.1999.27.1.87
- Villeneuve M., Chatenoud C., Minnes P.M. et al. The experience of parents as their children with developmental disabilities transition from early intervention to kindergarten. Canadian Journal of Education, 2013, vol. 36, no. 1, pp. 4–43.
- Wanamaker C.E., Glenwick D.S. Stress, coping, and perceptions of child behavior in parents of preschoolers with cerebral palsy. Rehabilitation Psychology, 1998, vol. 43, no. 4, pp. 297–312. DOI: https://doi.org/10.1037/0090-5550.43.4.297
- Wang Y., Huang Z., Kong F. Parenting stress and life satisfaction in mothers of children with cerebral palsy: The mediating effect of social support. Journal of Health Psychology, 2017, vol. 25, no. 3, pp. 416–425. DOI: 10.1177/1359105317739100
- Whittingham K., Wee D., Sanders M.R. et al. Sorrow, coping and resiliency: Parents of children with cerebral palsy share their experiences. Disability and Rehabilitation 2013, vol. 35, no. 17, pp. 1447–1452. DOI: 10.3109/09638288.2012.737081
- Williams C.M., Tinley P., Curtin M. Idiopathic toe walking and sensory processing dysfunction. Journal of Foot and Ankle Research, 2010, vol. 3, article 6. DOI: 10.1186/1757-1146-3-16
- Wood N., Brown S. An exploratory study: The effects of sleep systems on sleep quality, pain and carer goals for non-ambulant children and young people with cerebral palsy. Journal of Rehabilitation and Assistive Technologies Engineering, 2022, no. 9. Article 20556683211070729. DOI: 10.1177/20556683211070729.
- Woodbridge S., Buys L., Miller E. ‘My grandchild has a disability’: Impact on grandparenting identity, roles and relationships. Journal of Aging Studies, 2012, vol. 25, no. 4, pp. 355–363. DOI: 10.1016/j.jaging.2011.01.002
- Woodgate R.L., Edwards M., Ripat J.D. et al. Siblings of children with complex care needs: their perspectives and experiences of participating in everyday life. Child: Care, Health and Development, 2016, vol. 42, pp. 504–512. DOI: https://doi.org/10.1111/cch.12345
Information About the Authors
Metrics
Views
Total: 2623
Previous month: 114
Current month: 9
Downloads
Total: 243
Previous month: 11
Current month: 3