UNIVERSITY eliminating the aspect of ignorance that may

UNIVERSITY OF THEWITWATERSRANDFACULTY OF HEALTH SCIENCES     Parent’s understanding of and attitude towards their child’s clubfootafter initial counselling in our Ponseti Clubfoot Clinic.    Author: Group 19Kezia George, Nabila Lortan,Karlien Moyse, Cheyanne Moodley, Moeponi Pakkies, Zane Stenning, Kiren Moodleyand Ash Butau   Contact Details: Email:[email protected]

comCell:084 645 8863   Supervisor: Professor A. Robertson Date: 1 September 2017 Abstract To date, there has been no study thathas investigated whether counselling of parents during the initial correctionof their child’s clubfoot has improved the parents’ knowledge of clubfoot,thereby eliminating the aspect of ignorance that may lead to non-compliancewhen it comes to continuous application of a foot abduction brace for 4 years.Therefore, we aim to investigate whether the initial understanding and attitudeof parents towards clubfoot changes after 6 weeks of counselling provided by ahealth professional in the Ponseti Clubfoot Clinic, Charlotte MaxekeJohannesburg Academic Hospital (CMJAH). Parents/caregivers will be asked tocomplete a questionnaire on their initial visit to the clinic and again after 6weeks. This enables the research team to determine whether counselling duringthat time has had a significant impact on parents understanding and attitudetowards their child’s clubfoot, thereby decreasing the likelihood ofnon-compliance.

                  1.     Literature Review Congenital talipes equinovarus,better known as clubfoot, affects approximately 8 in every 1000 children bornin Africa (Dietz et al, 2009).Clubfoot presents at birth as a complex lower limb deformity (Parker et al, 2009) consisting of fourcomponents; equinus, varus, adductus and cavus deformities (Ballantyne , 2002).

The exact cause of clubfoot is unknown; however, a combinationof genetic, environmental and pre-natal factors may influence the developmentof clubfoot. The genetic component has been shown to play a significant role inclubfoot, with a positive family history being reported in 25% of cases as wellas there being a higher incidence in first-degree relatives (2%) when comparedto second-degree relatives (0.6%) (Lochmiller et al, 1998; Paton et al,2010). Pre-natal influences have been noted as a possible cause of clubfoot,where reduced foetal movement or muscular atrophy of the hind limb, as well asmaternal smoking during the first trimester have been linked to an increasedprevalence of neonates being born with clubfoot (Somppi, 1984; Honein et al, 2000).

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It seems that clubfoot isa multifactorial process, however, there is still much to be unravelledregarding the intricacies of the multifactorial influences driving thedevelopment of clubfoot. Clubfoot can be diagnosed as early asthe 12th week of gestation (Keret et al, 2002). However, in our society, the majority of clubfoot isdiagnosed at birth. The severity of the clubfoot is determined by using thePirani Scale (Appendix 1).

A 13-point scale comprising of six items whichdescribe the appearance and range of movement of the foot (Dyer and Davis,2006). The final score indicates the severity of the clubfoot. A score of zeroindicates a normal foot and a score of six indicates a severe foot deformity.The score is able to predict the outcomes of management, by predicting thenumber of casts to be used (Ponseti method) for the initial correction period(Dyer and Davis, 2006). Congenital Club Foot: The results of treatment was published in 1963 by Drs Ponseti andSmoley (Ponseti and Smoley, 1963). In this paper, the Ponseti method was firstdescribed.

However, it wasn’t until Thetreatment of idiopathic clubfoot was published in 1995 by Dr  Ponseti. In this paper 78% of patientsreported excellent outcomes following clubfoot correction via the Ponsetimethod some 30 years earlier (Cooper and Dietz, 1995). The Ponseti techniquehas significantly decreased the need for major surgery in the correction ofclubfoot, and is now the most widely used clubfoot management – particularly inSouth Africa (Zionts et al, 2010;Khan, 2005). The technique involves 6-8 weeks of serial casting withmanipulation of the foot occurring around the talo-crural joint (Ponseti et al, 2005).

The use of the serialcastings is associated with an improvement in the shape and positioning of theabnormal bone structures, and following the initial manipulation an Achillestenotomy is needed in up to 90% of cases (Zionts et al, 2010). Children are then required to wear a foot abductionshoe-brace for 23 hours a day for 3 months and thereafter, during sleep untilthe age of 4 (Zionts et al, 2010).Compliance with the bracing regime is imperative to the success of thetreatment and without it there may be a relapse (Haft et al, 2007).

Relapsed or untreated clubfoot is oneof the primary causes of physical disability in the world, affecting 1 in every750 children (Carney and Coburn, 2005). Untreated or poorly managed clubfoot isa large contributor to poverty in developing countries, as an individual’spotential productivity is diminished due to the pain associated with performingactivities, thus leading to dependency (Penny, 2005). Therefore, the correctmanagement and compliance of clubfoot is imperative to an affected individual’slong-term well-being. The issue of non-compliance regardingthe continued use of the foot abduction brace is the leading risk factor fordeformity recurrence (Garg and Porter, 2009). There are a number of reasons whyparents fail to comply with treatment guidelines, particularly failing in theapplication of the foot brace. Parents complain that their child cries andbecomes irritable during application thereby discouraging the parents tocontinue the application process (Jawadi etal, 2015; Rashid et al, 2016). Socio-economicreasons for poor compliance include the delay of obtaining a new foot braceonce the child has out grown their current orthosis, as parents do not have thetime or means to return to clinics to be issued with a new orthosis (Rashid et al, 2016).

Other reasons include thatof parental ignorance, where parents are unsure as to why their children needthe brace for the following 4 years when they have already been “cured” (Rashidet al, 2016).The lack of knowledge andunderstanding of parents to their child’s condition can be attributed to poorcompliance in the long-term treatment of clubfoot. Counselling of patients aswell as their caregivers has been shown to have a beneficial effect on theclinical outcome by improving patient compliance to the intervention (Goodyer et al, 1995). A recent Nigerian studyhas concluded that paying special attention to parents would improve theemotional and parenting stress experienced by these parents during theirchild’s clubfoot treatment (Esan et al,2017). To date, there has been no study thathas investigated whether counselling of parents during the initial correctionof their child’s clubfoot has improved the parents’ knowledge, understandingand attitude towards clubfoot and with the correlation of ignorance andnon-compliance seen in previous literature, the assumption can be made thatcounselling would improve the long-term compliance in application of the footabduction brace. 2.     AimTherefore, the aim of this study isto investigate whether the initial understanding and attitude of parentstowards clubfoot changes after six weeks of counselling provided by a healthprofessional in the Ponseti Clubfoot Clinic, Charlotte Maxeke JohannesburgAcademic Hospital (CMJAH).

3.     Objectives·        Assessthe attitude of parents towards their child clubfoot both before and after 6weeks of counselling.·        Assessthe response of parents towards 6 weeks of counselling.

 4.     MethodsStudy DesignQualitativedata will be collected using a questionnaire. The study design is therefore adescriptive survey. SettingThestudy will take place at the Ponseti Clubfoot Clinic in Charlotte MaxekeJohannesburg Academic Hospital (CMJAH), South Africa.

It will be conducted onWednesdays, the day on which the clinic is run.PopulationThestudy population will include parents, caregivers and/or guardians of childrenwith clubfoot, who have been referred and are presenting to the clinic fortreatment for the first time.·        Inclusion Criteria:Parents, caregiversand/or guardians of children with unilateral or bilateral clubfoot, that havebeen referred to the clinic and who are presenting to the clinic for the firsttime.·        Exclusion Criteria:Potential participantswho choose not to sign an informed consent form. Sample·        Sampling MethodThestudy sample will be recruited by consecutive sampling.

Every subject thatmeets the inclusion criteria within the study time frame, will be included inthe study. ·        Sample sizeThestudy will take place over six months, every subject meeting the inclusioncriteria and willing to sign informed consent in that time period will beincluded in the study. A sample size of n=25 is an initial goal. ·        Recruitment of participantsParents,caregivers and/or guardians of patients referred to the clinic for the first timewill be approached by a member of the research team who will explain the natureand procedure of the study and what is expected of them to be able toparticipate in the study. The individuals who have been approached will beasked for their permission to take part in the study, and if granted, aninformed consent form (Appendix 2) will be completed. Measurements & Data CollectionAquestionnaire (Appendix 3) as well as a demographic data sheet (Appendix 4)will be used to collect data.

As seen in Figure 1, eligible participants willbe seen on their first visit to the Ponseti Clubfoot Clinic. On this day, participantswill be asked to complete part one of the questionnaire, either by themselvesor with assistance from the research team members. Each research team memberwill keep track of their participants from day one and follow up the sameparticipant when they come back in week six to do part two of thequestionnaire. Counsellingof participants will occur after part one of the questionnaire has beencompleted and will continue on every subsequent visit of the participant to thePonseti Clubfoot Clinic. Health care professionals will be provided with acounselling checklist (Appendix 5) in order to standardise the counsellinggiving to each participant. The checklist provides a guideline and outlinesimportant points that need to be covered during each counselling session. Languagebarriers will be overcome by asking research team members as well as nursesworking in the clinic, who are fluent in African languages to interpret andtranslate explanations and responses.

              Figure 1. A schematicrepresentation of the data collection process. 5.     Data Management and AnalysisData OrganizationPaper questionnaires and demographicdata sheets will be collected by members of the research team. Members willthen input all information gathered onto a Microsoft Excel2010 spreadsheet,where scoring will take place. ScoringQuestions that ask for definitions/knowledgeof clubfoot will be scored according to how closely the answers resemble thedictionary/approved scientific definition. The scoring will be carried out bythe same research team member and each answer will be scored in the followingmanner:No idea = 0Some Idea =1A completeidea = 2 StorageAll papers questionnaires anddemographic data sheets will be kept in a locked locker, only accessible byresearch team members, in the Medical School of the University of theWitwatersrand, Johannesburg. AnalysisThe statistical analysis will beperformed using commercially available computer software (GraphPad Prism5;Microsoft Excel 2010).

Basic statistical analyses will be used, in addition toa Student T-test to compare parts one and two of the questionnaire, where a p ?0.05 will be considered as statistically significant. 6.     Expected Outcomes ·        Counsellingprovided by health care professionals in the clinic over a 6-week period willimprove the outlook and attitude of parents/caregivers towards their child’sclubfoot. Thereby, improving their willingness and compliance to treatmentinterventions.·        Theparents/caregiver’s social economic and educational status will be linked totheir understanding and attitude towards their child’s clubfoot.

Whereby moreaffluent and educated parents will understand more about their child’scondition.·        Counsellingwill help address cultural and societal misnomers, relating to the possiblecauses of clubfoot, thereby decreasing the likelihood of self-blame and guiltfelt by parents. 7.     Anticipated Problems ·        Failure of participant to present at follow up.

·        Experimental Bias: Bias introduced by the researchteam member, whose expectation about the outcome can be subtly communicated tothe participants.·        Subject Bias: Participants consciously orsubconsciously respond in a manner that they think the research member wantsthem to respond. 8.     Ethical and Legal ConsiderationsEthical clearance will beobtained from the Wits Human Research Ethics Committee priorto data collection. Consentwill be obtained before commencing with data collection and theconfidentiality of allparticipants will be ensured throughout the study. Participants will beable to withdraw from thestudy at any point in time; this decision will make their resultsinapplicable to the study.9.

     Timing   JUL 2017 AUG 2017 SEPT 2017 OCT 2017 NOV 2017 DEC 2017 JAN 2018 FEB 2018 MAR 2018 APR 2018 MAY 2018 JUNE 2018 JUL 2018 AUG 2018 SEPT 2018 Literature Review                               Protocol presentation                               Ethics Application                               Final Protocol Due                               Data Collection                               Data Analysis                               Final write-Up                               Final report due                                10.  FundingThis studyis self-funded by the student researchers.