Article
Barriers experienced by service providers and caregivers in clubfoot management in Kenya
Tropical Doctor 2015, Vol. 45(2) 84–90 ! The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0049475514564694 tdo.sagepub.com
Naomi Wanjiru Kingau1, Anthea Rhoda2 and Nondwe Mlenzana3
Abstract Aim: Disability in childhood remains a challenge globally. Linked to this disability is an apparent increase in the prevalence of infants born with congenital clubfoot. Clubfoot can, however, be effectively managed but this management faces various challenges. This study aims at exploring the barriers experienced in Kenya. Methods: In-depth interviews were conducted with 20 participants. Informed consent was sought. Field notes were taken and the interviews tape-recorded. The interviews took 45 minutes to 1 hour. They were transcribed verbatim and analysed by thematic content. Results: Missed diagnosis, poor referral system, shortage of staff, long travelling distance, poverty, stigmatisation and lack of support among other were highlighted as the major challenges in clubfoot management. Conclusion: The challenges facing children with disability start at birth but are little different from those faced throughout their life. Action to remove these challenges is warranted
Keywords Barriers, Clubfoot, Compliance, Conservative, Disability, Treatment, method, Perceptions, Rehabilitation, Congenital
Introduction Disability in childhood remains a big challenge.1 There appears to be an increase in the prevalence of infants born with clubfoot.2 The prevalence is estimated to be 2–4/1,000 live births in Malawi3 and Uganda.4 Clubfoot causes physical impairment and deformity which affects the individual’s gait and results, if untreated, in long-term disability.1,2 Poor gait and deformity results in further trauma to stressed tissues and liabilty to chronic sepsis, pain and ultimately disability. Disability in clubfoot threatens a person’s potential productivity,1 and leads to dependency on another individual within the family, which has a great impact on its financial and social economic status.5 Likewise, the structural deformity caused by clubfoot is associated with stigma, which has a deleterious psychological effect on the sufferer.5 Clubfoot can effectively be managed by the use mainly of conservative and less of surgical methods.2,6 Effective management should commence at or as near
as possible to birth.1 The aim is to correct the impairment, improve mobility and thus allow totally normal social participation.1,7 This has become a component of primary healthcare at the level of secondary prevention.8–10 Parents and caregivers are important stakeholders in the active management process. Their compliance is imperative for achieving good results.11,12 Without accurate and timely contribution and adherence to treatment protocols, the treatment goals cannot readily be achieved. 1 Lecturer at Moi University, Department of Orthopaedics & Rehabilitation, Eldoret, Kenya 2 Lecturer at University of Western Cape, Department of Physiotherapy, Cape Town, South Africa 3 Lecturer at University of Western Cape, Department of Physiotherapy, Cape Town, South Africa
Corresponding author: Naomi Wanjiru Kingau, Moi University, Department of Orthopaedics & Rehabilitation, P.O BOX 46 06- 30100 Eldoret, Kenya. Email: [email protected]
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In Uganda and Malawi service providers have embraced the use of Ponseti method for clubfoot management, which has been met with great success, though nonetheless with a few challenges.4,13 In Kenya, for example, at the Talipes Clinic in Nairobi, service providers are still using more traditional surgical and conservative methods of management of clubfoot. Review of medical records of 2009 indicated that there was an increase in neglected and complex (inadequately managed) cases. Indeed 5/36 patients managed per month had neglected and complex (inadequately managed) pathology. This inevitably leads to increased rates of associated disability. It is therefore imperative to identify the reasons behind the failure of service providers to deliver timely and effective management to children with clubfoot. It is of equal importance to explore what reduces the compliance of parents and caregivers. The barriers experienced by service providers and caregivers in effective clubfoot management in Kenya may thus be elucidated.
Methods Setting The study took place in the Kenyatta National Hospital, Mbagathi District and Kijabe Mission Hospitals. The first has a bed capacity of 2,500 and serves as the referral hospital for East and Central Africa and the eight provinces in Kenya. The second is the second largest hospital in Nairobi province with a bed capacity of 360 with an interdisciplinary clubfoot clinic; it provides services to eight districts. The third is in Central Province and offers a specialised service in orthopaedic surgery and paediatric surgery.
Sample The study population included parents and caregivers of children with clubfoot (130) and their service providers (37) acquire through a survey that preceded data collection. The purpose of the sample was to find out the reasons for failure of effective management of clubfoot. Purposive sample of parents/caregiver and service providers was generated from the population. The sample was further conveniently sampled based on the availability of parents and caregivers that had children under conservative and surgical management and were present during the time of data collection; sample included working and non-working parents, parents and caregivers from different backgrounds and from different geographical areas. The healthcare givers involved in management of clubfoot at the time of study were eligible for inclusion in the study, these
included physical therapist, doctors, nurses, occupational therapist and counsellors. The sample included 10 service providers and 10 caregivers. Two independent interview guides were used for the two groups; service providers provided information on methods of management, rationale and challenges. Parents/caregivers were interviewed on their perceptions about clubfoot as pathology and challenged during management. Interviews were done by the researcher. Interviews for service providers were conducted in English while for parents and caregivers interviews were carried out in English and Swahili. The interview guide for parents/ caregivers was translated into Swahili and three interviews done in Swahili, later translated into English by a specialist in linguistic services, and transcribed verbatim by a professional transcriber. Only two parents/ caregivers were involved in surgical care at the time of study. This was due to early intervention hence conservative management. Each interview lasted between 45 minutes and 1 hour, and were audio-recorded. Saturation (point in data collection when no new or relevant information emerges) was reached with the 10th service provider and eighth parent/caregiver. However, the ninth and the 10th parents/caregivers were interviewed since a prior appointment had been made and the interviews were included in the study.
Data analysis Data were subjected to thematic content analysis which involved identifying codes and categorising patterns.14,15 Following transcription, each interview was initially read for accuracy and then reviewed to identify the emergent themes and potential contradictions.16 On completion of all the interviews, the entire set of transcripts was read to obtain a sense of the whole and to generate a coding system based on issues identified from the data. The codes were then applied to the data to refine the coding development and to establish potential categories.16 Thereafter, categories were developed and they served to organise codes into meaningful clusters. Codes and categories were collapsed to evaluate emerging patterns and themes until the point was reached where no new information pertaining to the study question was generated.17 Participants’ transcripts were then reviewed to determine the proportion of participants whose answers corresponded to the major codes. The credibility and rigour of the analysis was aided by co-analysis of the transcript by the researcher’s supervisors and continued re-examination of the emergent data throughout the process. Arbitrary initials were used to distinguish the participants whilst ensuring confidentiality. These initials are used in the paper.
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Results Social demographic characteristics of participants in the current study are presented in Tables 1 and 2 for the service providers and parents/caregivers of children with clubfoot, respectively.
Sociodemographic profile of the healthcare providers Table 1. Service providers. Participant code
Gender
Age (years)
Occupation
SP SP SP SP SP SP SP SP SP SP
Male Male Male Female Female Female Male Female Male Male
47 26 42 36 30 29 32 48 50 44
Orthopaedic surgeon Orthopaedic technologist Occupational therapist Counsellor Counsellor Physiotherapist Occupational therapist Physiotherapist Orthopaedic technologist Orthopaedic surgeon
1 2 3 4 5 6 7 8 9 10
The service providers S2–S9 were using the Ponseti method while S1 and S10 were using the Ponseti and surgical method for management.
Table 2. Parents/caregivers. Participant Age code (years) Occupation
Relationship Type of to the child management with clubfoot method use
CG CG CG CG CG CG CG CG CG CG
Parent Parent Parent Parent Caregiver Parent Parent Parent Parent Caregiver
1 2 3 4 5 6 7 8 9 10
24 32 26 35 31 25 30 32 25 34
Student Housewife Housewife Housewife Housewife Physiotherapist Housewife Housewife Secretary Housewife
Ponseti Ponseti Ponseti Ponseti Ponseti Ponseti Surgical Ponseti Surgical Ponseti
Barriers experienced by service providers in clubfoot management Missed diagnosis and lack of knowledge on clubfoot management. Participants highlighted that the diagnosis was often missed at birth or not recognised by the service providers and therefore not referred on time.
‘So we are saying that clubfoot is missed at birth by health professionals in many places. In fact if you see any clubfoot which comes late, it was missed at birth, because anyone who sees that this is clubfoot will refer immediately.’ (SP 3) ‘I gave birth at Kenyatta National Hospital on 12 April 2011 and the nurse did not realise the child had a problem with the feet. So 4 hours later I realised that the child had a problem with the feet. (CG 8)
The participants similarly reported instances where service providers managed clubfoot inadequately even after timely and accurate diagnosis; as a result, the children were left with residual deformity. Furthermore, a few health caregivers were also said to have no idea that clubfoot needed to be actively managed. ‘I was told that with time the feet will get well.’ (CG 8)
Poor referral systems. Service providers perceived that there were deficiencies in the referral system. Some of the parents or caregivers reported having been referred to the wrong service providers, who seemed not to understand clubfoot management. This resulted in children being treated for several months without improvement. ‘There are still some health professionals who are not aware of where to refer these children.’ (SP 3) ‘In Kenyatta here, we were told to go to the orthopaedic department, occupational therapy, physiotherapy; it is like they did not know where we were supposed to go.’ (CG 1)
Shortage of trained staff on Ponseti method of management. Service providers reported that few staff are trained in the Ponseti method. The consequence of this is a paucity of Talipes clinics in Kenya. Insufficient training was attributed to lack of finances and the fact that the government had not taken up the project wholeheartedly. ‘We have not been able to train enough people.’ (SP 1) ‘We have 37 CCK clinic in the country which are not enough to manage clubfoot exhaustively.’ (SP 10)
Shortage of resources. Perceptions of training were contradictory in relation to number, with many participants feeling that the challenge was not in training, but in lack of resources. They maintained that there are many service providers who had been trained on
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Ponseti method but who were unable to practice due to lack of resources. ‘The people who are trained are not really few, they are many but very few are practicing, there are people who were trained but cannot offer services due to lack of materials.’ (SP 3)
Department of Orthopaedics and Rehabilitation Barriers to compliance by parents and caregivers during clubfoot management Travelling distance. The effect of distance from a service facility was evident as expected, especially considering the lack of transport and bad roads. Those parents and caregivers who travelled short distances and were able to reach health facilities easily were more compliant with treatment. Thus most respondents living near Mbagathi Hospital showed reasonable compliance. However, the majority of parents and caregivers were found to have had to travel long distances from home to the health facility in pursuit of treatment. ‘. . .okay coming to this place all the way from Gatundu is not easy, it takes time and money.’ (CG 7)
Lack of finances. Participants explained that some of the Talipes Clinics were not supported by Clubfoot Care Kenya (CCK), a non-governmental organisation (NGO). In these clinics, a fee of US$12 for casting and US$18 for abduction braces is charged. This, they felt, was not affordable for most and thus definitely negatively affected compliance. ‘. . .The major one is the financial problems. It is not easy to raise Ksh1000 per week for treatment.’ (CG 3)
Additionally, most parents and caregivers are unemployed and depend on their spouses or relatives for financial support. They revealed that they had no direct control over the finances that were essential for meeting the expenses. As a result, they dropped out when no funds were available and only returned for treatment when money was forthcoming. ‘Most of these women are housewives and they depend on their husband for support.’ (SP 7)
Stigmatisation. Participants identified stigma and discrimination as a challenge. Most parents and caregivers
explained that many people in rural areas thought that women who gave birth to children with clubfoot were cursed, bewitched or were being punished by God. Most of these women therefore, hid their children and so could not openly take their children for treatment for fear of ridicule. Additionally, children themselves experienced offensive labelling as ‘kiwete’, a derogatory term in Swahili akin to ‘lame’. Furthermore, such stigmatisation was reported as being a contributing factor to marital separation and thus poor parental support. Many mothers of children with clubfoot were considered to have genetic impairments and so blamed or even abandoned in consequence. A general lack of family support significantly affected adherence to treatment. ‘Some of the communities believe it could be probably because of a curse and nothing can be done about it.’ (SP 7) ‘When he saw that the child had clubfoot, he said that the child had been bewitched, he disappeared never to come back.’ (CG 6)
Discussion Ponseti is a method practised in most of the CCK clinics in Kenya; however some of the facilities that are not among CCK clinics still use the traditional methods of clubfoot management. This study demonstrates barriers to parents and caregivers obtaining treatment such as financial constraints, long distances to health facilities, stigmatisation and lack of family support consistent with the findings of Pirani1 and Beardsley.18 However, there are also challenges concerning service providers.19 Missed diagnosis was highlighted as one of the most significant challenges affecting clubfoot management viewed from the lens of the service provider. This and lack of knowledge of proper clubfoot management caused avoidable delays and thus significant complications. This is also commented on by Ponseti’s study in Uganda.1 Furthermore, general unawareness of the existence of Talipes Clinics within and outside the three settings was widespread, and jeopardised a correct referral. Sulowicz20 has advocated the necessity of a good referral system for timely and effective management. Poor referral delays the intervention, prolongs the period of management and increases the risk of complication and disability that are associated with clubfoot.20,21 A further challenge highlighted was a shortage of staff. A NGO, CCK, is collaborating with the government in clubfoot management, by training government service providers on Ponseti management and
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Figure 1. The 37 clinics in Kenya sponsored by CCK which were adequately providing Ponseti management at the time of this study.
providing materials for clubfoot management in a few Talipes Clinics. At the time of the study, there were only 37 clinics in Kenya sponsored by CCK which were adequately providing Ponseti management. These clinics are shown in Figure 1. The number of these clinics is not enough for the effective management of clubfoot in Kenya. On the contrary, some participants thought that there would be trained service providers in government facilities. For that reason, the study found an apparent lack of service delivery at the local level. With an average increase of two to three cases of clubfoot every day, it translate to 84–126 cases in every CCK clinic over a 6-week period which is the period estimated for discharge from serial casting. Therefore, for every clinic which averagely handles 20 cases per
week, there will be a need for an additional three clinics (CCK clinics operate once a week). For that reason, to adequately and effectively manage clubfoot in Kenya, the country requires a total of 148 clinics. Every clubfoot clinic has between three and five services providers. Therefore, for successful management in the estimated 148 clinics, 444–740 service providers would be required. Looking at the above figures, specialised clinics are not a feasible solution, but the Ponseti method needs to be understood and taught to nursing personnel at all district clinics in order to provide effective coverage. This is especially important as every day’s delay after birth before treatment is initiated counts. Similarly, most parents and caregivers subsist on irregular and informal income. Staheli21 found that lack of finance to cater for the transportation to health facilities and the cost of the treatment itself are major
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factors contributing to poor compliance. Significant improvement would, a priori, be seen if services extended to the community are offered free of charge. Stigmatisation both inside and outside the family was likewise seen as a challenge to clubfoot management. Mothers face divorce, reprisals and are ostracised. Bedford2 has previously shown that fathers in Malawi are hardly interested and are largely disconnected from their children’s treatment. In such a situation, stigmatisation totally undermines the financial, physical and emotional support that is desperately needed by mothers to encourage them to pursue treatment. Clubfoot children were similarly derogatively known as ‘Kopindikamapazi’ or ‘kupunduka’, meaning ‘cripple’ in Malawi, but all participants were proactive in suggesting that they should do more to promote public understanding about clubfoot.
Limitations Data were collected from service providers most of whom were using the Ponseti method; the experience of others using older methods could therefore not be evaluated. No interviews could be arranged with parents or caregivers who had defaulted. The findings of the current study are based on a purposive and convenience sampling, and thus the study results may not be generalised except to similar settings.
Conclusion This study highlights the considerable obstacles which still exist to the proper, efficient and early management of clubfoot, which is one of the most cost-effective interventions in surgical practice. Interventions that are disability-preventing should be considered as part of public health policy. Acknowledgements Nondwe Mlenzana and Professor Anthea Rhoda for their extreme patience, motivation, support and guidance; Mr Titus Kilika, Chief Physiotherapist, Ministry of Medical Services for allowing leave for this study; my colleagues, Kotut, Wambua and Margaret, for taking over my duties; and all the staff at the Talipes Clinics visited.
Declaration of conflicting interests None declared.
Funding This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.
References 1. Pirani S, Naddumba E, Mathias R, Konde-Lule J, Penny JN, Beyeza T, et al. Toward effective Ponseti clubfoot care: the Uganda Sustainable Clubfoot Care Project. Clin Orthop Relat Res 2009; 467: 1154–1163. 2. Dobbs M, Carey C, Morcuende J and Ponseti I. Late recurrence of clubfoot deformity: a 45-year followup. Clin Orthop Relat Res 2003; 411: 188–192. 3. Tindall AJ, Steinlechner C, Lavy C, Mannion S and Mkandawire N. Results of manupulation of idiopathic clubfoot deformity in Malawi by orthopaedic clinical officers using the Ponseti method: a realistic alternative for the developing world? J Ped Orthop 2005; 25: 627–629. 4. Mathias R, Konde- Lule J, Waiswa G, Naddumba E and Pirani S. Incidence of clubfoot in Uganda. Pub Health 2010; 101: 341–344. 5. Bedford J. Perceptions of and treatment-seeking behaviour for Congenital Talipes Equinovarus (Clubfoot) Deformity in Malawi. 2009. Available at: www.anthrologica.com/malawi.pdf. 6. Frick L. The Ponseti method of treatment for congenital clubfoot. Importance of maximal forefoot supination in initial casting. J Orthop 2005; 28: 63–65. 7. Ponseti I. Ponseti clubfoot management: A parent giude to the foot abduction braces. 2005. Available at: http:// www.vh.org/pediatric/patient/orthopaedics/clubfeet/ index.html. 8. World Health Organization. From Disability and rehabilitation in Primary Health Care. A guide for district health and rehabilitation managers. Geneva: WHO, 2011. Available at: http://www.who.int. 9. Peterson B. International classification of functioning, disability and health: an introduction for rehabilitation psychologists. J Rehab Psych 2005; 50: 105–112. 10. Ireland C. Adherence to physiotherapy and quality of life for adults and adolescents with cystic fibrosis. J Physiotherapy 2003; 89: 397–407. 11. Shack N and Eastwood D. Early results of a physiotherapist-delivered Ponseti service for the management of idiopathic congenital talipes equinovarus foot deformity. J Bone Joint Surg Br 2006; 88: 1085–1090. 12. Howe T, Rochester L, Neil F, Skelton D and Ballinger C. Exercise for improving balance in older people. Cochrane Database Syst Rev 2011; 11: CD004963. 13. Bedford J, Chidothi P, Sakala H, Cashman J and Lavy C. Clubfoot in Malawi: treatment seeking behaviour. Trop Doct 2011; 41: 211–214. 14. Creswell J and Miller D. Determining validity in qualitative inquiry. Theory Into Practice 2000; 39: 124–130. 15. Ritchie J and Spencer L. Qualitative data analysis for applied policy research. In: Bryman A and Burgess R (eds) Analysing Qualitative Data. London: Routledge, 1993, pp.173–194. 16. Graneheim U and Lundman B. Qualitative content analysis in nursing research:concepts, procedures and measures to achieve trustiworthiness. Nurse Educ Today 2004; 24: 105–112.
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17. Ulin PR, Robinson ET and Tolly EE. Qualitative Method in Public Health. San Francisco, CA: Jossey-Bass, 2005. 18. Beardsley K, Wish E, Fitzelle D, O’Grady K and Arria A. Distance travelled to outpatient drug treatment and client retention. J Subst Abuse Treat 2003; 25: 279–285. 19. Whitworth J, Pickering H, Mulwanyi F, Ruberantwari A, Dolin P and Johnson G. Determinants of attendance and
patient satisfaction at eye-clinics in South western Uganda. Health Policy and Planning 1999; 14: 77–81. 20. Sulowicz W and Stompo´r T. Timely referral to the nephrologist: Essential to optimizing patient outcomes. Hemodial Int 2004; 8: 233–243. 21. Staheli L. Ponseti Management. 3rd edn. 2009. Available at: www.global-help.org.
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Barriers experienced by service providers and caregivers in clubfoot management in Kenya
Tropical Doctor 2015, Vol. 45(2) 84–90 ! The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0049475514564694 tdo.sagepub.com
Naomi Wanjiru Kingau1, Anthea Rhoda2 and Nondwe Mlenzana3
Abstract Aim: Disability in childhood remains a challenge globally. Linked to this disability is an apparent increase in the prevalence of infants born with congenital clubfoot. Clubfoot can, however, be effectively managed but this management faces various challenges. This study aims at exploring the barriers experienced in Kenya. Methods: In-depth interviews were conducted with 20 participants. Informed consent was sought. Field notes were taken and the interviews tape-recorded. The interviews took 45 minutes to 1 hour. They were transcribed verbatim and analysed by thematic content. Results: Missed diagnosis, poor referral system, shortage of staff, long travelling distance, poverty, stigmatisation and lack of support among other were highlighted as the major challenges in clubfoot management. Conclusion: The challenges facing children with disability start at birth but are little different from those faced throughout their life. Action to remove these challenges is warranted
Keywords Barriers, Clubfoot, Compliance, Conservative, Disability, Treatment, method, Perceptions, Rehabilitation, Congenital
Introduction Disability in childhood remains a big challenge.1 There appears to be an increase in the prevalence of infants born with clubfoot.2 The prevalence is estimated to be 2–4/1,000 live births in Malawi3 and Uganda.4 Clubfoot causes physical impairment and deformity which affects the individual’s gait and results, if untreated, in long-term disability.1,2 Poor gait and deformity results in further trauma to stressed tissues and liabilty to chronic sepsis, pain and ultimately disability. Disability in clubfoot threatens a person’s potential productivity,1 and leads to dependency on another individual within the family, which has a great impact on its financial and social economic status.5 Likewise, the structural deformity caused by clubfoot is associated with stigma, which has a deleterious psychological effect on the sufferer.5 Clubfoot can effectively be managed by the use mainly of conservative and less of surgical methods.2,6 Effective management should commence at or as near
as possible to birth.1 The aim is to correct the impairment, improve mobility and thus allow totally normal social participation.1,7 This has become a component of primary healthcare at the level of secondary prevention.8–10 Parents and caregivers are important stakeholders in the active management process. Their compliance is imperative for achieving good results.11,12 Without accurate and timely contribution and adherence to treatment protocols, the treatment goals cannot readily be achieved. 1 Lecturer at Moi University, Department of Orthopaedics & Rehabilitation, Eldoret, Kenya 2 Lecturer at University of Western Cape, Department of Physiotherapy, Cape Town, South Africa 3 Lecturer at University of Western Cape, Department of Physiotherapy, Cape Town, South Africa
Corresponding author: Naomi Wanjiru Kingau, Moi University, Department of Orthopaedics & Rehabilitation, P.O BOX 46 06- 30100 Eldoret, Kenya. Email: [email protected]
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In Uganda and Malawi service providers have embraced the use of Ponseti method for clubfoot management, which has been met with great success, though nonetheless with a few challenges.4,13 In Kenya, for example, at the Talipes Clinic in Nairobi, service providers are still using more traditional surgical and conservative methods of management of clubfoot. Review of medical records of 2009 indicated that there was an increase in neglected and complex (inadequately managed) cases. Indeed 5/36 patients managed per month had neglected and complex (inadequately managed) pathology. This inevitably leads to increased rates of associated disability. It is therefore imperative to identify the reasons behind the failure of service providers to deliver timely and effective management to children with clubfoot. It is of equal importance to explore what reduces the compliance of parents and caregivers. The barriers experienced by service providers and caregivers in effective clubfoot management in Kenya may thus be elucidated.
Methods Setting The study took place in the Kenyatta National Hospital, Mbagathi District and Kijabe Mission Hospitals. The first has a bed capacity of 2,500 and serves as the referral hospital for East and Central Africa and the eight provinces in Kenya. The second is the second largest hospital in Nairobi province with a bed capacity of 360 with an interdisciplinary clubfoot clinic; it provides services to eight districts. The third is in Central Province and offers a specialised service in orthopaedic surgery and paediatric surgery.
Sample The study population included parents and caregivers of children with clubfoot (130) and their service providers (37) acquire through a survey that preceded data collection. The purpose of the sample was to find out the reasons for failure of effective management of clubfoot. Purposive sample of parents/caregiver and service providers was generated from the population. The sample was further conveniently sampled based on the availability of parents and caregivers that had children under conservative and surgical management and were present during the time of data collection; sample included working and non-working parents, parents and caregivers from different backgrounds and from different geographical areas. The healthcare givers involved in management of clubfoot at the time of study were eligible for inclusion in the study, these
included physical therapist, doctors, nurses, occupational therapist and counsellors. The sample included 10 service providers and 10 caregivers. Two independent interview guides were used for the two groups; service providers provided information on methods of management, rationale and challenges. Parents/caregivers were interviewed on their perceptions about clubfoot as pathology and challenged during management. Interviews were done by the researcher. Interviews for service providers were conducted in English while for parents and caregivers interviews were carried out in English and Swahili. The interview guide for parents/ caregivers was translated into Swahili and three interviews done in Swahili, later translated into English by a specialist in linguistic services, and transcribed verbatim by a professional transcriber. Only two parents/ caregivers were involved in surgical care at the time of study. This was due to early intervention hence conservative management. Each interview lasted between 45 minutes and 1 hour, and were audio-recorded. Saturation (point in data collection when no new or relevant information emerges) was reached with the 10th service provider and eighth parent/caregiver. However, the ninth and the 10th parents/caregivers were interviewed since a prior appointment had been made and the interviews were included in the study.
Data analysis Data were subjected to thematic content analysis which involved identifying codes and categorising patterns.14,15 Following transcription, each interview was initially read for accuracy and then reviewed to identify the emergent themes and potential contradictions.16 On completion of all the interviews, the entire set of transcripts was read to obtain a sense of the whole and to generate a coding system based on issues identified from the data. The codes were then applied to the data to refine the coding development and to establish potential categories.16 Thereafter, categories were developed and they served to organise codes into meaningful clusters. Codes and categories were collapsed to evaluate emerging patterns and themes until the point was reached where no new information pertaining to the study question was generated.17 Participants’ transcripts were then reviewed to determine the proportion of participants whose answers corresponded to the major codes. The credibility and rigour of the analysis was aided by co-analysis of the transcript by the researcher’s supervisors and continued re-examination of the emergent data throughout the process. Arbitrary initials were used to distinguish the participants whilst ensuring confidentiality. These initials are used in the paper.
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Results Social demographic characteristics of participants in the current study are presented in Tables 1 and 2 for the service providers and parents/caregivers of children with clubfoot, respectively.
Sociodemographic profile of the healthcare providers Table 1. Service providers. Participant code
Gender
Age (years)
Occupation
SP SP SP SP SP SP SP SP SP SP
Male Male Male Female Female Female Male Female Male Male
47 26 42 36 30 29 32 48 50 44
Orthopaedic surgeon Orthopaedic technologist Occupational therapist Counsellor Counsellor Physiotherapist Occupational therapist Physiotherapist Orthopaedic technologist Orthopaedic surgeon
1 2 3 4 5 6 7 8 9 10
The service providers S2–S9 were using the Ponseti method while S1 and S10 were using the Ponseti and surgical method for management.
Table 2. Parents/caregivers. Participant Age code (years) Occupation
Relationship Type of to the child management with clubfoot method use
CG CG CG CG CG CG CG CG CG CG
Parent Parent Parent Parent Caregiver Parent Parent Parent Parent Caregiver
1 2 3 4 5 6 7 8 9 10
24 32 26 35 31 25 30 32 25 34
Student Housewife Housewife Housewife Housewife Physiotherapist Housewife Housewife Secretary Housewife
Ponseti Ponseti Ponseti Ponseti Ponseti Ponseti Surgical Ponseti Surgical Ponseti
Barriers experienced by service providers in clubfoot management Missed diagnosis and lack of knowledge on clubfoot management. Participants highlighted that the diagnosis was often missed at birth or not recognised by the service providers and therefore not referred on time.
‘So we are saying that clubfoot is missed at birth by health professionals in many places. In fact if you see any clubfoot which comes late, it was missed at birth, because anyone who sees that this is clubfoot will refer immediately.’ (SP 3) ‘I gave birth at Kenyatta National Hospital on 12 April 2011 and the nurse did not realise the child had a problem with the feet. So 4 hours later I realised that the child had a problem with the feet. (CG 8)
The participants similarly reported instances where service providers managed clubfoot inadequately even after timely and accurate diagnosis; as a result, the children were left with residual deformity. Furthermore, a few health caregivers were also said to have no idea that clubfoot needed to be actively managed. ‘I was told that with time the feet will get well.’ (CG 8)
Poor referral systems. Service providers perceived that there were deficiencies in the referral system. Some of the parents or caregivers reported having been referred to the wrong service providers, who seemed not to understand clubfoot management. This resulted in children being treated for several months without improvement. ‘There are still some health professionals who are not aware of where to refer these children.’ (SP 3) ‘In Kenyatta here, we were told to go to the orthopaedic department, occupational therapy, physiotherapy; it is like they did not know where we were supposed to go.’ (CG 1)
Shortage of trained staff on Ponseti method of management. Service providers reported that few staff are trained in the Ponseti method. The consequence of this is a paucity of Talipes clinics in Kenya. Insufficient training was attributed to lack of finances and the fact that the government had not taken up the project wholeheartedly. ‘We have not been able to train enough people.’ (SP 1) ‘We have 37 CCK clinic in the country which are not enough to manage clubfoot exhaustively.’ (SP 10)
Shortage of resources. Perceptions of training were contradictory in relation to number, with many participants feeling that the challenge was not in training, but in lack of resources. They maintained that there are many service providers who had been trained on
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Ponseti method but who were unable to practice due to lack of resources. ‘The people who are trained are not really few, they are many but very few are practicing, there are people who were trained but cannot offer services due to lack of materials.’ (SP 3)
Department of Orthopaedics and Rehabilitation Barriers to compliance by parents and caregivers during clubfoot management Travelling distance. The effect of distance from a service facility was evident as expected, especially considering the lack of transport and bad roads. Those parents and caregivers who travelled short distances and were able to reach health facilities easily were more compliant with treatment. Thus most respondents living near Mbagathi Hospital showed reasonable compliance. However, the majority of parents and caregivers were found to have had to travel long distances from home to the health facility in pursuit of treatment. ‘. . .okay coming to this place all the way from Gatundu is not easy, it takes time and money.’ (CG 7)
Lack of finances. Participants explained that some of the Talipes Clinics were not supported by Clubfoot Care Kenya (CCK), a non-governmental organisation (NGO). In these clinics, a fee of US$12 for casting and US$18 for abduction braces is charged. This, they felt, was not affordable for most and thus definitely negatively affected compliance. ‘. . .The major one is the financial problems. It is not easy to raise Ksh1000 per week for treatment.’ (CG 3)
Additionally, most parents and caregivers are unemployed and depend on their spouses or relatives for financial support. They revealed that they had no direct control over the finances that were essential for meeting the expenses. As a result, they dropped out when no funds were available and only returned for treatment when money was forthcoming. ‘Most of these women are housewives and they depend on their husband for support.’ (SP 7)
Stigmatisation. Participants identified stigma and discrimination as a challenge. Most parents and caregivers
explained that many people in rural areas thought that women who gave birth to children with clubfoot were cursed, bewitched or were being punished by God. Most of these women therefore, hid their children and so could not openly take their children for treatment for fear of ridicule. Additionally, children themselves experienced offensive labelling as ‘kiwete’, a derogatory term in Swahili akin to ‘lame’. Furthermore, such stigmatisation was reported as being a contributing factor to marital separation and thus poor parental support. Many mothers of children with clubfoot were considered to have genetic impairments and so blamed or even abandoned in consequence. A general lack of family support significantly affected adherence to treatment. ‘Some of the communities believe it could be probably because of a curse and nothing can be done about it.’ (SP 7) ‘When he saw that the child had clubfoot, he said that the child had been bewitched, he disappeared never to come back.’ (CG 6)
Discussion Ponseti is a method practised in most of the CCK clinics in Kenya; however some of the facilities that are not among CCK clinics still use the traditional methods of clubfoot management. This study demonstrates barriers to parents and caregivers obtaining treatment such as financial constraints, long distances to health facilities, stigmatisation and lack of family support consistent with the findings of Pirani1 and Beardsley.18 However, there are also challenges concerning service providers.19 Missed diagnosis was highlighted as one of the most significant challenges affecting clubfoot management viewed from the lens of the service provider. This and lack of knowledge of proper clubfoot management caused avoidable delays and thus significant complications. This is also commented on by Ponseti’s study in Uganda.1 Furthermore, general unawareness of the existence of Talipes Clinics within and outside the three settings was widespread, and jeopardised a correct referral. Sulowicz20 has advocated the necessity of a good referral system for timely and effective management. Poor referral delays the intervention, prolongs the period of management and increases the risk of complication and disability that are associated with clubfoot.20,21 A further challenge highlighted was a shortage of staff. A NGO, CCK, is collaborating with the government in clubfoot management, by training government service providers on Ponseti management and
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Figure 1. The 37 clinics in Kenya sponsored by CCK which were adequately providing Ponseti management at the time of this study.
providing materials for clubfoot management in a few Talipes Clinics. At the time of the study, there were only 37 clinics in Kenya sponsored by CCK which were adequately providing Ponseti management. These clinics are shown in Figure 1. The number of these clinics is not enough for the effective management of clubfoot in Kenya. On the contrary, some participants thought that there would be trained service providers in government facilities. For that reason, the study found an apparent lack of service delivery at the local level. With an average increase of two to three cases of clubfoot every day, it translate to 84–126 cases in every CCK clinic over a 6-week period which is the period estimated for discharge from serial casting. Therefore, for every clinic which averagely handles 20 cases per
week, there will be a need for an additional three clinics (CCK clinics operate once a week). For that reason, to adequately and effectively manage clubfoot in Kenya, the country requires a total of 148 clinics. Every clubfoot clinic has between three and five services providers. Therefore, for successful management in the estimated 148 clinics, 444–740 service providers would be required. Looking at the above figures, specialised clinics are not a feasible solution, but the Ponseti method needs to be understood and taught to nursing personnel at all district clinics in order to provide effective coverage. This is especially important as every day’s delay after birth before treatment is initiated counts. Similarly, most parents and caregivers subsist on irregular and informal income. Staheli21 found that lack of finance to cater for the transportation to health facilities and the cost of the treatment itself are major
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factors contributing to poor compliance. Significant improvement would, a priori, be seen if services extended to the community are offered free of charge. Stigmatisation both inside and outside the family was likewise seen as a challenge to clubfoot management. Mothers face divorce, reprisals and are ostracised. Bedford2 has previously shown that fathers in Malawi are hardly interested and are largely disconnected from their children’s treatment. In such a situation, stigmatisation totally undermines the financial, physical and emotional support that is desperately needed by mothers to encourage them to pursue treatment. Clubfoot children were similarly derogatively known as ‘Kopindikamapazi’ or ‘kupunduka’, meaning ‘cripple’ in Malawi, but all participants were proactive in suggesting that they should do more to promote public understanding about clubfoot.
Limitations Data were collected from service providers most of whom were using the Ponseti method; the experience of others using older methods could therefore not be evaluated. No interviews could be arranged with parents or caregivers who had defaulted. The findings of the current study are based on a purposive and convenience sampling, and thus the study results may not be generalised except to similar settings.
Conclusion This study highlights the considerable obstacles which still exist to the proper, efficient and early management of clubfoot, which is one of the most cost-effective interventions in surgical practice. Interventions that are disability-preventing should be considered as part of public health policy. Acknowledgements Nondwe Mlenzana and Professor Anthea Rhoda for their extreme patience, motivation, support and guidance; Mr Titus Kilika, Chief Physiotherapist, Ministry of Medical Services for allowing leave for this study; my colleagues, Kotut, Wambua and Margaret, for taking over my duties; and all the staff at the Talipes Clinics visited.
Declaration of conflicting interests None declared.
Funding This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.
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