The impact of hospital-based and community based models of cerebral palsy rehabilitation: a quasi-experimental study

BMC Pediatrics

Jennifer Jelsma²  Jermaine M Dambi¹ 

[1] Research Fellow at University of Cape Town, Lecturer Department of Rehabilitation, College of Health Sciences, University of Zimbabwe, Avondale, Harare, Zimbabwe;Division of Physiotherapy, Department of Health and Rehabilitation Sciences, Faculty of Health Sciences, University of Cape Town, Anzio Road, Observatory, Cape Town, South Africa

关键词: Zimbabwe;    Rehabilitation;    Institution based intervention;    Community based rehabilitation;    Cerebral palsy;   

Others  :  1090722
DOI  :  10.1186/s12887-014-0301-8

 received in 2014-06-25, accepted in 2014-11-25,  发布年份 2014

【 摘 要 】

Background

Cerebral palsy requires appropriate on-going rehabilitation intervention which should effectively meet the needs of both children and parents/care-givers. The provision of effective support is a challenge, particularly in resource constrained settings. A quasi-experimental pragmatic research design was used to compare the impact of two models of rehabilitation service delivery currently offered in Harare, Zimbabwe, an outreach-based programme and the other institution-based.

Method

Questionnaires were distributed to 46 caregivers of children with cerebral palsy at baseline and after three months. Twenty children received rehabilitation services in a community setting and 26 received services as outpatients at a central hospital. The Gross Motor Function Measurement was used to assess functional change. The burden of care was measured using the Caregiver Strain Index, satisfaction with physiotherapy was assessed using the modified Medrisk satisfaction with physiotherapy services questionnaire and compliance was measured as the proportion met of the scheduled appointments.

Results

Children receiving outreach-based treatment were significantly older than children in the institution-based group. Regression analysis revealed that, once age and level of severity were controlled for, children in the outreach-based treatment group improved their motor function 6% more than children receiving institution-based services.

There were no differences detected between the groups with regard to caregiver well-being and 51% of the caregivers reported signs consistent with clinical distress/depression. Most caregivers (83%) expressed that they were overwhelmed by the caregiving role and this increased with the chronicity of care. The financial burden of caregiver was predictive of caregiver strain.

Caregivers in the outreach-based group reported greater satisfaction with services and were more compliant (p < .001) as compared to recipients of institution-based services.

Conclusion

Long term caregiving leads to strain in caregivers and there is a need to design interventions to alleviate the burden. The study was a pragmatic, quasi-experimental study thus causality cannot be inferred. However findings from this study suggest that the provision of care within a community setting as part of a well-structured outreach programme may be preferable method of service delivery within a resource-constrained context. It was associated with a greater improvement in functioning, greater satisfaction with services and better compliance.

【 授权许可】

   
2014 Dambi and Jelsma; licensee BioMed Central Ltd.

【 图 表 】

Figure 1.

【 参考文献 】

• [1]Gagliardi C, Maghini C, Germiniasi C, Stefanoni G, Molteni F, Burt DM, Turconi AC: The effect of frequency of cerebral palsy treatment: a matched-pair pilot study. Pediatr Neurol 2008, 39:335-340.
• [2]Berker AN, Yalçin MS: Cerebral palsy: orthopedic aspects and rehabilitation. Pediatr Clin North Am 2008, 55:1209-1225. ix
• [3]Martin B, Murray G, Peter R, Alan L, Nigel P: Proposed definition and classification of cerebral palsy, April 2005.pdf. Dev Med Child Neurol 2005, 47:571-576.
• [4]Clark S, Hankins G: Temporal and demographic trends in cerebral palsy — Fact and fiction. Am J Obstet Gynecol 2003, 188:628-633.
• [5]Finkenflugel H, Maannen VV, Schut W, Vermeer A, Jelsma J, Moyo A: Appreciation of community based rehabilitation by caregivers of children with a disability. Disabil Rehabil 1996, 18:255-260.
• [6]Moster D, Wilcox AJ, Vollset SE, Markestad T, Lie RT: Cerebral palsy among term and postterm births. JAMA 2010, 304:976-982.
• [7]Sharan D, Ajeesh PS, Rameshkumar R, Manjula M: Musculoskeletal disorders in caregivers of children with cerebral palsy following a multilevel surgery. Work A J Prev Assess Rehabil 2012, 41 Suppl 1:1891-1895.
• [8]Jones MW, Morgan E, Shelton JE, Thorogood C: Cerebral palsy: introduction and diagnosis (part I). J Pediatr Health Care 2007, 21:146-152.
• [9]Hamzat TK, Mordi EL: Impact of Caring for Children with Cerebral Palsy on the General Health of Their Caregivers in an African Community. 2007.
• [10]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. Childcare, Heal Dev 2009, 36:63-73.
• [11]Aisen ML, Kerkovich D, Mast J, Mulroy S, Wren TA, Kay RM, Rethlefsen SA: Cerebral palsy: clinical care and neurological rehabilitation. Lancet Neurol 2011, 10:844-852.
• [12]Law MC, Darrah J, Pollock N, Wilson B, Russell DJ, Walter SD, Rosenbaum P, Galuppi B: Focus on function: a cluster, randomized controlled trial comparing child- versus context-focused intervention for young children with cerebral palsy. Dev Med Child Neurol 2011, 53:621-629.
• [13][http://english.aifo.it/disability/apdrj/frimeet202/national.doc] webcite National programme for rehabilitation of persons with disabilities – A blend of CBR and IBR []
• [14]Olaogun MOB, Nyante GG, Ajediran A: Overcoming the Barriers for Participation by the Disabled: An appraisal and global view of community-based rehabilitation in community development. Community Health (Bristol) 2009, 1(No.1 June):24-29.
• [15][http://www.who.int/disabilities/cbr/guidelines/en/] webcite Community-based rehabilitation: CBR Guidelines []
• [16]Mitchell REG: The research base of community-based rehabilitation. Disabil Rehabil 1999, 21:459-468.
• [17]Myezwa H, M’kumbuzi V: Participation in community based rehabilitation programmes in Zimbabwe: where are we? Asia Pacific Disabil Rehabil J 2003, 14:18-29.
• [18][http://whqlibdoc.who.int/publications/9241590432.pdf] webcite Community-Based Rehabilitation as we have experienced it …voices of persons with disabilities []
• [19]Velema JP, Cornielje H: Reflect before you act: providing structure to the evaluation of rehabilitation programmes. Disabil Rehabil 2003, 25:1252-1264.
• [20]Sharma M: Viable methods for evaluation of community-based rehabilitation programmes. Disabil Rehabil 2004, 26:326-334.
• [21]Cornielje H, Velema JP, Finkenflu H: Community based rehabilitation programmes: monitoring and evaluation in order to measure results. Lepr Rev 2008, 79:36-49.
• [22][https://open.uct.ac.za/browse?value=Dambi%2C+Jermaine+Matewu&type=author] webcite A comparison of hospital-based and community based models of cerebral palsy rehabilitation. []
• [23][http://apps.who.int/medicinedocs/en/d/Js17996en/] webcite The national health strategy for Zimbabwe (2009 – 2013) []
• [24]Debuse D, Brace H: Outcome measures of activity for children with cerebral palsy: a systematic review. Pediatr Phys Ther 2011, 23:221-231.
• [25]Trahan J, Malouin F: Intermittent intensive physiotherapy in children with cerebral palsy: a pilot study. Dev Med Child Neurol 2002, 44:233-239.
• [26]Tsorlakis N, Evaggelinou C, Grouios G, Tsorbatzoudis C: Effect of intensive neurodevelopmental treatment in gross motor function of children with cerebral palsy. Dev Med Child Neurol 2004, 46:740-745.
• [27]Chen M-L, Hu L-C: The generalizability of Caregiver Strain Index in family caregivers of cancer patients. Int J Nurs Stud 2002, 39:823-829.
• [28]Narekuli A, Raja K, Kumaran S: Impact of physical therapy on burden of caregivers of individuals with functional disability. Disabilty, CBR Incl Dev 2011, 22:108-119.
• [29]Palisano R, Rosenbaum P, Walter S, Russell D, Wood E, Galuppi B: Development and reliability of a system to classify gross motor function in children with cerebral palsy. Dev Med Child Neurol 1997, 39:214-223.
• [30]Mccarthy ML, Silberstein CE, Atkins EA, Harryman SE, Sponseller PD, Hadley-Miller NA: Comparing reliability and validity of pediatric instruments for measuring health and well-being of children with spastic cerebral palsy. Dev Med Child Neurol 2002, 44:468-476.
• [31]Gorter JW, Rosenbaum PL, Hanna SE, Palisano RJ, Bartlett DJ, Russell DJ, Wood E, Walter SD, Raina P, Galuppi BE: Limb distribution, motor impairment, and functional classification of cerebral palsy. Dev Med Child Neurol 2004, 46:461-467.
• [32]Robinson B: Validation of a Caregiver Strain Index. J Gerontol 1983, 38:344-348.
• [33]Harding KE, Taylor NF: Highly satisfied or eager to please? Assessing satisfaction among allied health outpatients. Int J Ther Rehabil 2010, 17:353-359.
• [34]Raina P, Donnell MO, Rosenbaum P, Brehaut J, Stephen D, Russell D, Swinton M, Zhu B, Wood E, Walter SD: The Health and Well-Being of Caregivers of Children With Cerebral Palsy The online version of this article, along with updated information and services, is located on the World Wide Web at: The Health and Well-Being of Caregivers of Children With Cereb. 2012.
• [35]Becher JG: Pediatric Rehabilitation in Children with Cerebral Palsy: General Management, Classification of Motor Disorders. Am Acad Orthotists Prosthetists 2002, 14:143-149.
• [36]O’Shea TM: Diagnosis, Treatment, and Prevention of Cerebral Palsy in Near- Term/Term Infants. Clin Obstet Gynecol J 2008, 51:816-828.
• [37]Health-related Quality of Life of Nigerian Children with Cerebral Palsy., 22:95–104.
• [38]Eker L, Tüzün EH: An evaluation of quality of life of mothers of children with cerebral palsy. Disabil Rehabil 2004, 26:1354-1359.
• [39]Cheshire A, Barlow JH, Powell LA: The psychosocial well-being of parents of children with cerebral palsy: a comparison study. Disabil Rehabil 2010, 32:1673-1677.
• [40]Ustad T, Sorsdahl AB, Ljunggren AE: Effects of intensive physiotherapy in infants newly diagnosed with cerebral palsy. Pediatr Phys Ther 2009, 21:140-148. discussion 149
• [41]Morgan P: BMC Paediatrics Reviewer’s Report -The Impact of Hospital-Based and Community Based Models of Cerebral Palsy Rehabilitation: A Quasi-Experimental Study. 2014.
• [42][http:/ / www.emcdda.europa.eu/ attachements.cfm/ att_5868_EN_6_client_satisfaction_e valuations.pdf] webcite Client Satisfaction Evaluations []
• [43]Christiansen AS, Lange C: Intermittent versus continuous physiotherapy in children with cerebral palsy. Dev Med Child Neurol 2008, 50:290-293.
• [44]Hills R, Kitchen S: Development of a model of patient satisfaction with physiotherapy. Physiother Theory Pract 2007, 23:255-272.
• [45]Mendonça K, Guerra R: Development and validation of an instrument for measuring patient satisfaction with physical therapy. Rev bras fisioter, São Carlos 2007, 11:369-376.
• [46]Ogunlesi T, Chb MB, Ogundeyi M, Olowu A, Bs MB: Socio-clinical issues in cerebral palsy in Sagamu, Nigeria. SA J Child Heal 2008, 2:120-123.
• [47]Vermeire E, Hearnshaw H, Royen PV, Denekens J: Patient adherence to treatment: three decades of research. A comprehensive review. J Clin Pharm Ther 2001, 26:331-342.
• [48]Middleton A: Chronic low back pain: patient compliance with physiotherapy advice and exercise, perceived barriers and motivation. Phys Ther Rev 2004, 9:153-160.
• [49]Murphy KM, Rasmussen L, Hervey-jumper SL, Justice D, Nelson VS, Yang LJ: An assessment of the compliance and utility of a home exercise DVD for caregivers of children and adolescents with brachial plexus palsy: a pilot study. Am Acad Phys Med Rehabil 2012, 4:190-197.
• [50]Alexandre NMC, Nordin M, Hiebert R, Campello M: Predictors of compliance with short-term treatment among patients with back pain. Rev Panam salud pública/Pan Am J public Heal 2002, 12:86-94.
• [51]Escolar-reina P, Medina-mirapeix F, Gascón-cánovas JJ, Montilla-herrador J, Jimeno-serrano FJ, Sousa SLDO, Baño-aledo ME, Lomas-vega R: How do care-provider and home exercise program characteristics affect patient adherence in chronic neck and back pain : a qualitative study. BMC Health Serv Res 2010, 10:1-8. BioMed Central Full Text