The needs of parents of children with cerebral palsy
Authors:
J. Kučová; L. Sikorová
Authors place of work:
Ostravská univerzita v Ostravě Lékařská fakulta, Děkan: doc. MUDr. Arnošt Martínek, CSc.
Published in the journal:
Prakt. Lék. 2012; 92(9): 509-512
Category:
Of different specialties
Summary
Introduction:
Family is one of the most important elements in the treatment of a handicapped child. However, the quality of interaction between the family and the child may be significantly affected by unfulfilled needs of the parents. Knowledge of the needs of a family with a handicapped child enables experts to provide comprehensive care focused not only on the child but also on the family in accordance with the current trend in nursing care – Family Centered Care. The aim of the paper was to summarize available information about the needs of parents of children with infantile cerebral palsy (ICP).
Methodology:
Research focused on the needs of parents of children with ICP were searched by means of Boolean operators in professional licensed databases and in freely accessible databases. The criteria for the selection of papers were: studies published between 2000 and 2012, studies published in English, full text of the published research, age of children with ICP between 1 and 7 years, and the quantitative or combined research approach. A total of 40 research papers were analysed.
Findings:
Nine areas of parents’ needs were identified: health support, support from others, family relationships, services, information and communication, disease management, funds, time management and family adaptation.
Key words:
infantile cerebral palsy; parenting; needs; psychosocial well-being; disabilities; parental stress
Zdroje
1. Almasri, N.A., Palisano, R.J., Dunst, C.J., et al.: Determinants of needs of families of children and youth with cerebral palsy. Children´s health care, 2011, 40(2), p. 130–154.
2. Balling, K., McCubin, M.: Hospitalized children with chronic illness: parental caregiving needs and valuing parental expertise. J Pediatr Nurs, 2001, 16(2), p. 110–119.
3. Barlow, J.H., Powell, L.A., Gilchrist, M., Fotiadou, M.: The effectiveness of the training and support program for parents of children with disabilities: A randomized controlled trial. J Psychosom Res, 2008, 64(1), p. 55–62.
4. Brehaut, J.C., Kohen, D.E., Garner, R.E., et al.: Health among caregivers of children with health problems: Findings from a Canadian population-based study. Am J Public Health, 2009, 99(7), p. 1254–1262.
5. Buran, C.F., Sawin, K., Grayson, P., Criss, S.: Family needs assessment in Cerebral Palsy Clinic. J Spec Pediatr Nurs, 2009, 14(2), p. 86–93.
6. Burton-Smith, R., McVilly, K.R., Yazbeck, M., et al.: Service and support neeeds of Australian carers supporting a family member with disability at home. J Intellect Dev Disabil, 2009, 34(3), p. 239–247.
7. Butcher, P.R., Wind, T., Bouma, A.: Parenting stress in mothers and fathers of child with hemiparesis: Sources of stress, interventing factors and long-term expressions of stress. Child Care Health Dev, 2008, 34(4), p. 530-541.
8. Button, S., Pianta, R.C., Marvin, R.S.: Partner support and maternal stress in families rating young children with cerebral palsy. J Dev Phys Disabil, 2001, 13(1), p. 61–80.
9. Cowen, P.S., Reed, D.A.: Effects of respite care for children with developmental disabilities: Evalution of an intervention for at risk families. Public Health Nurs, 2002, 19(4), p. 272–283.
10. Curran, A.L., Sharples, P.M., White, C., Knapp, M.: Time costs of caring for children with severe disabilities compared with caring for children without disabilities. Dev Med Child Neurol, 2001, 43(8), p. 529–533.
11. Diamond, K.E., Kontos, S.: Families´resources and accommodations: Toddlers with down syndrome, cerebral palsy, and developmental delay. J Early Interv, 2004, 26(4), p. 253–265.
12. Ellis, J.T., Luiselli, J.K., Amirault, D., et al.: Families of children with developmental disabilities: Assessment and comparison of self-reported needs in relation to situational variables. J Dev Phys Disabil, 2002, 14(2), p. 191–202.
13. Glenn, S., Conningham, C., Poole, H., et al.: Maternal parenting stress and its correlates in families with a young child with cerebral palsy. Child Care Health Dev, 2008, 35(1), p. 71–78.
14. Hendriks, A., De Moor, J., Oud, J., Franken, W.: Service needs of parents with motor or multiply disabled children in Duch therapeutic toddler classes. Clin Rehabil, 2000, 14, p. 506–517.
15. Hung, J.W., Wu, Y.H., Yeh, CH.: Comparing stress levels of parents of childrens with cancer and parents of children with physical disabilities. Psychooncology, 2004, 13(12), p. 898–903.
16. Cheshire, A., Barlow, J.H., Powell, L.A.: The psychosocial well-being of parents of children with cerebral palsy: A comparison study. Disabil Rehabil, 2010, 32(20), p. 1673–1677.
17. Ikeda, T., Nagai, T., Kato-Nishimura, K., et al.: Sleep problems in physically disabled children and burden on caregivers. Brain Dev, 2012, 34, p. 223–229.
18. Jeglinsky, I., Autti-Rämö, I., Brogren Carlberg, E.: Two sides of the mirror: Parents´and service providers´view on the family-centeredness of care for children with cerebral palsy. Child Care Health Dev, 2011, 38(1), p. 79–86.
19. Jones, J., Passey, J.: Family adaptation, coping and resources: Parents of children with developmental disabilities and behaviour problems. Journal on Developmental Disabilities, 2004, 11(1), p. 31–46.
20. Kaya, K., Unsal-Delialioglu, S., Ordu-Gokkaya, N.K., et al.: Musculo-skeletal pain, quality of life and depression in mothers of children with cerebral palsy. Disabil Rehabil, 2010, 32(20), p. 1666–1672.
21. Ketelaar, M., Volman, J.M., Gorter, J.W., Vermeer, A.: Stress in parents of children with cerebral palsy: What sources of stress are we talking about. Child Care Health Dev, 2008, 34(6), p. 825–829.
22. Kraus, J., a kol.: Dětská mozková obrna. 1. vyd. Praha: Grada, 2005. 344 s. ISBN 80-247-1018-8.
23. Lin, S.L.: Coping and adaptation in families of children with cerebral palsy. Except Child, 2000, 66(2), p. 201–216.
24. Manuel, J., Naughton, M.J., Balkrishnan, R., et al.: Stress and adaptation in mothers of children with cerebral palsy. J Pediatr Psychol, 2003, 28(3), p. 197–201.
25. Margalit, M., Kleitman, T.: Mothers´stress, resilience and early intervention. Eur J Spec Needs Educ, 2006, 21(3), p. 269–283.
26. Mobarak, R., Khan, N.Z., Munir, S., et al.: Predictors of stress in mothers of children with cerebral palsy in Bangladesh. J Pediatr Psychol, 2000, 25(6), p. 427-433.
27. Mugno, D., Ruta, L., D´Arrigo, V.G., Mazzone, L.: Impairment of quality og life in parents of children and adolescents with pervasive developmental disorder. Health Qual Life Outcomes, 2007, 5, p. 22–30.
28. Murphy, N., Caplin, D.A., Christian, B.J., et al.: The function of parents and their children with cerebral palsy. PM R, 2011, 3, p. 98–104.
29. Neely-Barnes, S., Dia, D.A.: Families of children with disabilities: A review of literature and recommendations for interventions, J Early Intensive Behav Interv, 2008, 5(3), p. 93–105.
30. Palisano, R.J., Almasri, N., Chiarello, M.N., et al.: Family needs of parents of children and youth with cerebral palsy. Child Care Health Dev, 2009, 36(1), p. 85–91.
31. Pirila, S., Van Der Meere, J., Seppänen, R.L., et al.: Children with functional motor limitations: The effects on family strengths. Child Psychiatry Hum Dev, 2005, 35(3), p. 281–294.
32. Phua, V., Reid, S.M., Walstab, J.E., Reddihough, D.S.: Inpatient care of children with cerebral palsy as perceived by their parents. J Paediatr Child Health, 2005, 41, p. 432–436.
33. Raina, P., O´Donell, M., Rosenbaum, P., et al.: The health and well-beeing of caregivers of children with cerebral palsy. Pediatrics, 2005, 115(6), p. 626–636.
34. Sen, E., Yurtsever, S.: Difficulties experience by families with disabled children. J Spec Pediatr Nurs, 2007, 12(4), p. 238–252.
35. Sullivan-Bolyai, S., Knafl, K.A., Sadler, L., Gillis, C.L.: Great expectations: a position description for parents as caregivers: Part I. Paediatr Nurs, 2003, 29(6), p. 457–461.
36. Tong, H., Haig, A.J., Nelson, V.S., et al.: Low back pain in adult female caregivers of children with physical disabilities. Arch Pediatr Adolesc Med, 2003, 157, p. 1128–1133.
37. Tonga, E., Düger, T.: Factors affecting low back pain in mothers who have disabled children. J Back Musculoskelet Rehabil, 2008, 21, p. 219–226.
38. Vijesh, P.V., Sukumaran, P.S.: Stress among mothers of children with cerebral palsy attendig special schools. Asia Pacific Disab Rehab J, 2007, 18(1), p. 76–92.
39. Wang, H., Jong, Y.: Parental stress and related factors in parents of children with cerebral palsy. Kaohsiung J Med Sci, 2004, 20, p. 334–338.
40. Wang, P., Michaels, C.A., Day, M.: Stresses and coping strategies of Cinese families with children with autism and other developmental disabilities. J Autism Dev Disord, 2011, 41, p. 783–795.
41. Woolfson, L., Grant, E.: Authoritative parenting and parental stress in parents of pre-school and older children with developmental disabilities. Child Care Health Dev, 2006, 32(2), p. 177–184.
Štítky
General practitioner for children and adolescents General practitioner for adultsČlánok vyšiel v časopise
General Practitioner
2012 Číslo 9
- Advances in the Treatment of Myasthenia Gravis on the Horizon
- Memantine Eases Daily Life for Patients and Caregivers
- What Effect Can Be Expected from Limosilactobacillus reuteri in Mucositis and Peri-Implantitis?
- Spasmolytic Effect of Metamizole
- Metamizole at a Glance and in Practice – Effective Non-Opioid Analgesic for All Ages
Najčítanejšie v tomto čísle
- Differential diagnosis of genital ulcerations
- Acute bleeding from oesophageal varices
- Psychosocial care of women after perinatal death
- Psychological aspects of stress on medical students