CHAPTER 5: CONCLUSION, LIMITATIONS AND IMPLICATIONS
5.1. Conclusion
Cleft lip and/or palate is currently the most commonly occurring craniofacial anomaly (American Cleft Palate Craniofacial Association [ACPA], 2000), affecting approximately one in six hundred babies worldwide (Kummer, 2001). Services for children with cleft lip and/or palate, including Speech-Language Therapy can begin prenatally, and continue into adulthood. At the early intervention stage, these services include, but are not limited to early surgical intervention, early orthodontic intervention, early audiological intervention as well as early speech-language assessment and therapy. With specific reference to Speech-Language Therapy, the presence of a cleft may have an adverse effect on speech development, feeding and language development. In South Africa, it has been estimated that the incidence of cleft lip and/or palate births between 2005 and 2008 ranged between 25 and 30 per one hundred thousand births. These figures appear low at first glance, however in comparison to other congenital anomalies such as albinism, anencephaly and clubfoot, cleft lip and/or palate ranks as the third most frequent congenital anomaly in KwaZulu-Natal (Wilson, L., personal communication, August 14, 2009).
The aim of this research study was to provide an overview of Speech-Language Therapy services for children with cleft lip and/or palate from birth to three years of age, within the KwaZulu-Natal health sector. Such an investigation has not been undertaken previously; however studies in cleft team care by Dekker (2007) and cultural considerations in cleft lip and palate (Louw, Shibambu & Roemer, 2006) have been undertaken in South Africa.
With regard to South Africa, the health system is largely divided into two major components, namely the public and private health sectors. The unequal distribution of services and human resources between these sectors in relation to the size of the population served by each is a known factor (Kautzky & Tollman, 2008). South African policies and frameworks relating to health care formed a backdrop to this research study, focusing on one province, KwaZulu-Natal.
Questionnaires were distributed and 23 responses were received. Four private and nineteen public hospital based Speech-Language Therapists responded to the research questionnaire, yielding an overall return rate of 53%. Of these, all four private based Speech-Language Therapists were not working with cleft lip and/or palate from birth to three years of age, thus the results of the study are only applicable to the public health sector of KwaZulu-Natal.
The number of Speech-Language Therapists currently working with cleft lip and/or palate from birth to three years and those who have worked with cleft lip and/or palate from birth to three in the last two to three years is similar. It therefore appears possible that the number of Speech-Language Therapists in the public health sector and their services to children with cleft lip and/or palate has not changed over the past two to three years, similar to the incidence of cleft lip and/or palate births. Speech- Language Therapists who have not been working with cleft lip and/or palate from birth to three years have reported a lack of referrals as well as providing services to children with cleft lip and/or palate older than three years of age as the major reasons why. The presence of a team approach, i.e. the best practice to cleft care appears challenging but still developing in KwaZulu-Natal, as only four Speech-Language Therapists reported that they function as a member of a cleft team. This is similar to findings by Olasoji (2009) in Africa as a whole. All four of the teams that are reported as existing, are multidisciplinary in nature, and consist mainly of Speech- Language Therapists, doctors, and nurses. The existence of these cleft lip and/or palate teams appears to be related to the existence of policies (institutional and departmental) for cleft lip and/or palate, as those participants who are working within teams reported the existence of policies.
With regard to the Speech-Language Therapists’ assessment of the child with a cleft lip and/or palate in the age range of birth to three years of age, the most common areas of assessment are case history, oral peripheral examination, feeding observational assessments, language and speech assessment. It was concerning that the assessment of audiological status and the assessment of resonance were mentioned by only a few participants, as middle ear infection is a common occurrence in cleft palate, and resonance is a major concern (Kummer, 2001). With regard to management, it is concerning that the majority of participants mentioned the use of
blowing exercises for velopharyngeal insufficiency. This is strongly discouraged by Kummer (2002), who reports on the importance of considering the impact of these exercises on speech, which is non-existent. Importantly, though, Speech-Language Therapists are appropriately referring children for ear, nose and throat evaluations to determine if there is an underlying physical reason for velopharyngeal insufficiency.
Of concern is the availability of assistive feeding devices for cleft lip and/or palate as, for the majority of participants (55%), these are never available, and only sometimes available for 27% of the Speech-Language Therapists. This is highly concerning as it appears contradictory to the National Rehabilitation Policy (Department of Health, 2000), that states the instant access to these devices should be guaranteed.
Most Speech-Language Therapists reported being consulted within a few days of the birth of a child with a cleft lip and/or palate, which is consistent with international guidelines (American Academy of Paediatric Dentistry, 2008). Referrals for these patients come mainly from doctors and surgeons, as well as the neonatal intensive care unit. An important finding was that few referrals were received from the geneticist, which is possibly due to a shortage of geneticists in South Africa as a whole (Department of Health, 2001).
In conclusion, the South African Department of Health Human Genetic Policy lists cleft lip and palate as a priority condition to assess and manage in the South African health context (Department of Health, 2001). In addition, the ACPA (2007) lists the satisfaction of patients and their families as an additional measure of treatment outcome. However, the treatment of these children requires consideration of monetary costs, human resources and best practice according to international guidelines with an attempt to formulate the most effective and holistic assessment and management for them. As each Speech-Language Therapist in the KwaZulu-Natal health sector has different views on the services provided, so too do different KwaZulu-Natal institutions have different practice methods. The guidelines for best practice as outlined by ACPA (2007) should therefore be applied as effectively as is possible in KwaZulu-Natal, to ensure that identified gaps in service delivery are bridged effectively.