A qualitative study to conceptualize levels of awareness, acceptance and expectations in parents of children with cerebral palsy in Gujarat, India

Vivek H. Ramanandi, Maitry D. Jayswal, Dhara N. Panchal


Background: Caring for a child with a disability presents a multifaceted challenge for managing and coping with the child’s functional limitations and possible long term dependence to the caregiver and family. A wide range of psychosocial problems are experienced by the parents of children with CP. As an important member of the rehabilitation team, Physiotherapists comes in regular and long term contact with family and care givers of the CP child. This increase responsibilities of a physiotherapist from more than just dealing with sensory-motor rehabilitation of a CP child to understand need and expectations and guide/counsel the caregiver, parents or family as and when needed. Studies like this can provide valuable information for designing a family centered care program for children with CP. Objective of present study was to identify the main concepts which represent levels of awareness, acceptance and their expectations in parents of children with cerebral palsy in Gujarat.

Methods: Qualitative research design using in-depth semi structured interviews was used for the study. Total 21 parents were selected using purposive sampling and were interviewed till data saturation was achieved. The main descriptive elements regarding their levels of awareness, acceptance and expectations were extracted using content analysis method.

Results: Common themes such as disturbed social relationships, health problems, financial problems, worries about future of the child, need for more support services, and lack of adequate number of trained physiotherapists were experienced by the parents.

Conclusions: A wide range of experiences were described by the parents of children with CP. Studies like this can provide valuable information for improving depth and quality of rehabilitation services by a physiotherapist through a family centered care program for children with CP. 


Awareness, Acceptance, Cerebral palsy, Expectations, Family centered care, Parents

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Bax M, Goldstein M, Rosenbaum P, Leviton A, Paneth N, Dan B, et al. Proposed definition and classification of cerebral palsy, April 2005. Dev Med Child Neurol. 2005;47(08):571-6.

Raina P, O'Donnell M, Rosenbaum P, Brehaut J, Walter SD, Russell D, et al. The health and well-being of caregivers of children with cerebral palsy. Pediatrics. 2005;115(6):e626-e36.

Mendenhall A, Mount K. Parents of children with mental illness: Exploring the caregiver experience and caregiver-focused interventions. Families in society: J Contemp Soc Services. 2011;92(2):183-90.

Cheng AL, Kang YK, Chen Z, Tsao C-J, Qin S, Kim JS et al. Efficacy and safety of sorafenib in patients in the Asia-Pacific region with advanced hepatocellular carcinoma: a phase III randomised, double-blind, placebo-controlled trial. Lancet Oncol. 2009;10(1):25-34.

Diwan S, Chovatiya H, Diwan J. Depression and quality of life in mothers of children with cerebral palsy. Natl J Integr Res Med. 2011;2(4):11-3.

Ambikile JS, Outwater A. Challenges of caring for children with mental disorders: Experiences and views of caregivers attending the outpatient clinic at Muhimbili National Hospital, Dar es Salaam-Tanzania. Child Adolescent Psychiatry Mental Health. 2012;6(1):16.

Majnemer A, Shevell M, Law M, Poulin C, Rosenbaum P. Indicators of distress in families of children with cerebral palsy. Disabil Rehabil. 2012;34(14):1202-7.

Alaee N, Shahboulaghi FM, Khankeh H, Kermanshahi SMK. Psychosocial challenges for parents of children with cerebral palsy: A qualitative study. J Child Fam Studies. 2015;24(7):2147-54.

Knox V. Do parents of children with cerebral palsy express different concerns in relation to their child's type of cerebral palsy, age and level of disability?. Physiotherapy. 2008;94(1):56-62.

Manuel J, Naughton MJ, Balkrishnan R, Paterson Smith B, Koman LA. Stress and adaptation in mothers of children with cerebral palsy. J Pediatric Psychol. 2003;28(3):197-201.

Breslau N, Staruch KS, Mortimer EA. (1982). Psychological distress in mothers of disabled children. Am J Dis Children. 1982;136(8):682-6.

Ones K, Yilmaz E, Cetinkaya B, Caglar N. Assessment of the quality of life of mothers of children with cerebral palsy (primary caregivers). Neurorehabilit Neural Repair. 2005;19(3):232-7.

Kaya K, Unsal-Delialioglu S, Ordu-Gokkaya NK, Ozisler Z, Ergun N, Ozel S et al. Musculo-skeletal pain, quality of life and depression in mothers of children with cerebral palsy. Disabil Rehabil. 2010;32(20):1666-72.

Sajedi F1, Alizad V, Malekkhosravi G, Karimlou M, Vameghi R. Depression in mothers of children with cerebral palsy and its relation to severity and type of cerebral palsy. Acta Med Iran. 2010 Jul-Aug;48(4):250-4.

Singer GH. Meta-analysis of comparative studies of depression in mothers of children with and without developmental disabilities. Am J Ment Retard. 2006 May;111(3):155-69.

Wayte S, McCaughey E, Holley S, Annaz D, Hill CM. Sleep problems in children with cerebral palsy and their relationship with maternal sleep and depression. Acta Paediatr. 2012 Jun;101(6):618-23.

Ramanandi VH, Rao B. Comparison of stress levels in the parents of children with cerebral palsy and parents of normal children in vadodara region of Gujarat. Int J Physiother. 2015 Jan;2(2):421-8.

Elo S, Kyngäs H. The qualitative content analysis process. J Advance Nurs. 2008 Apr;62(1):107-15.

Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qualitative health research. 2005 Nov;15(9):1277-88.

Jones J, Hunter D. Consensus methods for medical and health services research. BMJ. 1995 Aug 5;311(7001):376.

Luo Y, Yang J, Zhang Y. Development and validation of a patient-reported outcome measure for stroke patients. Health Qual Life Outcomes. 2015;13:53.

Yaghmale F. Content validity and its estimation. Journal of Medical Education. 2003;3(1):25-7.

Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Edu Today. 2004 Feb;24(2):105-12.

Burnard P. A method of analysing interview transcripts in qualitative research. Nurse Edu Today. 1991 Dec;11(6):461-6.

Nimbalkar S, Raithatha S, Shah R, Panchal DA. A qualitative study of psychosocial problems among parents of children with cerebral palsy attending two tertiary care hospitals in western India. ISRN family Medicine. 2014 Feb;2014.

Rathod VJ, Alagesan J. Family awareness on legislative issues on child with cerebral palsy: cross sectional survey. Int J Physiother Res. 2014;2(3).

Davis E, Shelly A, Waters E, Boyd R, Cook K, Davern M. The impact of caring for a child with cerebral palsy: quality of life for mothers and fathers. Child: Care, Health Develop. 2010 Jan 1;36(1):63-73.

Hall HR, Neely-Barnes SL, Graff JC, Krcek TE, Roberts RJ, Hankins JS. Parental stress in families of children with a genetic disorder/disability and the resiliency model of family stress, adjustment, and adaptation. Issues Comprehen Pediatr Nurs. 2012 Mar 1;35(1):24-44.

Gallagher S, Phillips AC, Oliver C, Carroll D. Predictors of psychological morbidity in parents of children with intellectual disabilities. J Pediatr Psychol. 2008 Apr;33(10):1129-36.

Brehaut JC, Kohen DE, Raina P, Walter SD, Russell DJ, Swinton M et al. The health of primary caregivers of children with cerebral palsy: how does it compare with that of other Canadian caregivers? Pediatrics. 2004 Aug;114(2):e182-91.

Lach LM, Kohen DE, Garner RE, Brehaut JC, Miller AR, Klassen AF, Rosenbaum PL. The health and psychosocial functioning of caregivers of children with neurodevelopmental disorders. Disabil Rehabil. 2009 Jan;31(8):607-18.

Gallagher S, Phillips AC, Carroll D. Parental stress is associated with poor sleep quality in parents caring for children with developmental disabilities. J Pediatr Psychol. 2009 Oct 29;35(7):728-37.

Heaman DJ. Perceived stressors and coping strategies of parents who have children with developmental disabilities: a comparison of mothers with fathers. J Pediatr Nurs. 1995 Oct;10(5):311-20.