Establishing a pediatric occupational therapy clinic in the public-sector in Trinidad: The quest for clinical and professional expansion

Abstract

BACKGROUND:

Pediatric occupational therapy (OT) in Trinidad is limited to costly private sector provision, which restricts access to only those families that can afford it. Public-sector healthcare, however, is offered free of charge to citizens. Establishing public-sector OT can increase the well-being and quality of life of children with disabilities and their families, as well as broaden the professional paths available to occupational therapists.

OBJECTIVE:

In the absence of local studies, primary research was undertaken to demonstrate the demand for services. The results of this study will be presented to government officials to argue for the inclusion of pediatric OT into one public-sector hospital in Trinidad.

METHODS:

Eighty-eight parents/caregivers of a child with special needs were surveyed at one public sector-waiting room or two private-sector therapy clinics. Surveys questioned parents’ desire for occupational therapy services for their child, their willingness to use public-sector-provided therapy and their belief that such therapy would benefit families in Trinidad, among other items.

RESULTS:

Of the 88 participants surveyed, 98.8% believed that occupational therapy offered at one public-sector clinic in Trinidad would benefit families. The main deterrents to accessing the proposed public-sector therapy included satisfaction with the current therapist (40%) and concerns with convenience (33%) and efficiency (27%). Parents whose children were not currently receiving therapy cited cost (67%) and location (38%) as the main barriers.

CONCLUSIONS:

Primary research findings demonstrate that the vast majority of parents/caregivers believe that public-sector pediatric occupational therapy would benefit families. Service free of charge will increase access for many families who cannot currently afford treatment. Implications of a pediatric public-sector clinic also include the expansion of occupational therapy as a profession in Trinidad.

Keywords

Government demand Caribbean children research

1 Introduction

The benefits of occupational therapy (OT) intervention for children with disabilities are numerous and impactful [1]. Among many other advantages, OT can help children to develop their functional living skills, form relationships with others, improve in motor co-ordination, and transition to adulthood [2]. Restricted access to treatment, therefore, can deprive the child, and his or her family of the opportunities to reach their fullest potential. In Trinidad, pediatric occupational therapy is available at private clinics at great costs to families. This is incongruous with the healthcare climate of the nation, in which public-sector care is offered free of charge. Unfortunately, there are no pediatric governmental OT positions available. Families who cannot afford OT simply will have no access to the services. This discussion describes the current work climate for occupational therapists practicing in Trinidad and proposes a solution to the problem of private sector saturation: the creation of a pediatric occupational therapy clinic at one public-sector hospital, the Wendy Fitzwilliam Children’s Hospital at the Eric Williams Medical Sciences Complex in Mount Hope, Trinidad.

The choice of site is not spontaneous. Attempts to address the lack of public-sector OT services began at the EWMSC almost a decade ago. In 2010, the effort of one specialist developmental pediatrician and local and foreign occupational therapists resulted in the allocation of space within the hospital for OT services (Dick N 2016, oral communication, 15th November). Additionally, basic materials were approved and subsequently purchased by the purchased by the North Central Regional Health Authority (NCRHA), the governing body of the EWMSC. Currently, the renovated bathrooms, office and treatment space and new equipment remain securely locked away; never having been used, awaiting governmental approval of the proposed pediatric occupational therapy clinic.

The current healthcare climate in Trinidad strongly reflects that of its British colonizers. Healthcare is offered free of charge and is funded by national insurance and taxation.

Unfortunately, though healthcare has grown and expanded internationally, the system in Trinidad remains largely the same as it was at the nation’s time of independence in 1962. Occupational therapy offered by the Government is restricted to mental health practice. The purpose of this discussion by no means aims to undermine the importance of mental health occupational therapy. Indeed, the profession’s foundation in mental health [3] has added an interpersonal component that sets it apart from so many other professions. However, the fact remains that occupational therapy has evolved over the years.

In Trinidad and Tobago there are 17 occupational therapists currently practicing [4], but only three of those seventeen practices in the public-sector; two in Tobago, and one in Trinidad. Though Trinidad and Tobago comprise one nation, healthcare in Tobago is unique in that it is governed by a separate arm, the Tobago House of Assembly (THA; 5). This means that, though the Ministry of Health may develop policies and procedures, the application to Tobago is ultimately decided by the THA. Given this differentiation, the current study is written specifically with reference to Trinidad, not to Trinidad and Tobago as a whole. The American Occupational Therapy Association [6] reports that 26.6% percent of occupational therapists in the United States practice in hospitals and 19.9% in schools compared to 2.4% in mental health settings. In Trinidad, there are no therapists in hospitals or schools, and the one public-sector therapist (5%) in mental health. Whereas the Department of Education absorbs the majority of therapists into the school system in the United States, the Ministry of Health in Trinidad employs only one therapist and the Ministry of Education, none. This disparity is critical to healthcare accessibility in Trinidad, as private sector services come at steep costs to citizens.

The Ministry of the People and Social Development [7] estimates that there are 3,302 children with disabilities in Trinidad and Tobago. The percentage of such children currently receiving occupational therapy treatment is an indicator of the need for services. There are five pediatric clinics in the country that accommodate less than 1% of children with special needs. This means that 99% of children with disabilities go untreated. Skilled intervention has been shown to significantly increase the independence and capabilities of children with a variety of special needs. For example, a case study conducted by Lerslip, Putthinoi and Panyo [8], showed that a rigorous fine motor activities program improved the coordination, prehension and dexterity of an 8-year-old boy with Down’s syndrome. Another study by Sherry et al. [9], found that intensive occupational and physical therapy could significantly reduce pain and improve function in adolescents with fibromyalgia. Maeir et al. [10], investigated the effectiveness of a 12-week cognitive function intervention on 19 children with attention deficit hyperactivity disorder (ADHD). The authors found that one-hour sessions with parent and child were sufficient to improve occupational performance in the areas of social participation, activities of daily living, academic and leisure domains. These gains were not experienced by children in the control group and persisted in the four-month follow-up.

Pffeiffer, Koenig, Kinnealey and Henderson [11] provide further evidence for the effectiveness of occupational therapy intervention in treating children with a developmental disability. The authors studied the effectiveness of a sensory integration intervention on a group of 39 children with Autism Spectrum Disorder (ASD) and Pervasive Developmental Disorder (PDD) not otherwise specified (NOS). Findings showed that 18 forty-five-minute-long treatment sessions over the course of 6 weeks spurred significant progress towards the participants’ individual therapy goals, and to reduce autistic mannerisms.

The benefits of occupational therapy extend beyond the direct influence on the child to impact caregivers as well. Gee and Peterson [12], explored the effects of educational sessions on the parents and teachers of children with ASD. The authors found that in six sessions, caregivers were significantly more knowledgeable of the sensory processing component of ASD and were more confident in dealing with behaviours at home and in the classroom. The influence of occupational therapy for the child, and the community as whole can lead to an improved quality of life for thousands of children and families treating with special needs. These studies support that the inclusion of occupational therapy services in the public-sector provision is of highest priority.

It is not enough to provide international examples; the local point of view is key in governmental decision-making processes. To demonstrate the demand for occupational therapy (OT) services locally, a primary research component was included. This took the form of a brief questionnaire that was submitted to the parents/caregivers of children with disabilities in one public sector children’s hospital and two private sector occupational therapy clinics in Trinidad. The survey sought to determine whether or not parents and guardians desired public-sector OT, as well as highlight the factors that would encourage/discourage utilization of services. It was hypothesized that survey results would demonstrate the demand for occupational therapy services locally, as well as identify areas of concern with publicly offered services. Coupled with the international evidence-based literature, this research would convince government officials of the need for public-sector expansion by means of a pediatric clinic offered at the major children’s hospital in Trinidad. Such expansion would be of utmost benefit to children with disabilities and their families, as well as to the growth and development of the occupational therapy profession.

2 Methods

2.1 Participants

Between June and September of 2017, a total of 88 participants completed questionnaires, 48 who were approached at a public sector pediatric waiting room, and 40 of whom currently sought either OT, speech or art therapy privately. To be included in the study, parents/guardians had to have a child (birth to 18 years) with a developmental disability or medical condition, and had to provide verbal consent to the study. The age range of children whose parents completed this questionnaire was 1 year to 15 years, with a mean age of 6.0 years. The child’s diagnoses included: Autism Spectrum Disorder, Down’s Syndrome, Global Developmental Delay, and learning disability, among others.

2.2 Survey

To determine the demand for occupational therapy services in the public-sector feedback from the parents of children with disability was sought. Two parent surveys were devised. The first was designed for distribution to families in which the affected child was not currently receiving OT, and the second for families already enrolled in OT privately. Surveys began with a short description of the study, as well as an explanation of the role of occupational therapy in pediatrics. Surveys for families who were not receiving OT asked; (a) basic demographic data consisting of age and diagnosis, (b) whether the family would like the child to receive OT: yes or no, (c) reasons why the family would not pursue OT: options included “service unavailable in my area”, “high cost of service”. “I don’t think it would help my child”, “I don’t have time to take my child to therapy”, “Other”, (d) whether they believed that families would benefit from OT offered at the site: yes or no, and (e) whether the child was receiving any other therapy: behaviour, speech, art, medication, music).

Those for families currently receiving OT included three items: whether they believed that families would benefit from OT offered at the site (yes or no), whether they would access OT offered publicly and why/why not, and whether the child was receiving any other therapy: behaviour, speech, art, medication, music).

Fig.1

Comparison of public and private sector responses. The majority of parents in both the public and private sector believed that occupational therapy offered at the EWMSC would benefit families. Families approached at both the public and private sector stated that cost and location were deterrents to accessing private therapy. Families approached at the public-sector were significantly more likely to state that they would utilize public-sector services that families approached at private therapy clinics.

The surveys were granted exempt review from the Institutional Review Board (IRB) at Boston University, signifying that they posed minimal risk to the psychological and physical well-being of respondents. The three sites at which the questionnaires were distributed also provided written approval of the study.

2.3 Data analysis

Data were transferred to Microsoft Excel for statistical analysis. Percentages were used for the analysis of descriptive statistics. Given normal distribution, t-testing was used, and a p-value of less than 0.05 was considered statistically significant. How do you know the distribution was normal > What were you analysing?

3 Results

A total of 88 participants completed the survey. Results are presented in the sections that follow.

3.1 Demographics of the sample-

Of the 88 participants, forty-six percent had children with a diagnosis of Autism Spectrum Disorder, 13% with Global Developmental Delay - not otherwise specified, 10% with a learning disorder, 6.3% with Down Syndrome, 5.7% with Attention Deficit and Hyperactivity Disorder, 4% with cerebral palsy, 1% with anxiety disorder, 1% with occipital encephalocele, 1% with a congenital heart defect, and 12% undisclosed. Forty percent (n = 35) of the sample had children enrolled in occupational therapy services.

3.2 Demand for OT

Of the sixty percent of families (n = 53) who were not currently receiving OT, 85% (n = 45) reported that they wanted their child to receive OT; 95 % (n = 17) of the 18 families approached privately and 80% (n = 28) of the 35 families approached publicly.

3.3 Deterrents to accessing OT

Figure 1 demonstrates that, of the caregivers who wanted their child to receive OT, but who were not currently receiving treatment (n = 42), 67% of parents cited the cost of service as the main deterrent, and this trend did not differ between public and private sector responders (p = .19). Thirty-eight percent of these parents also stated that OT was not currently available in their geographic location.

3.4 View of OT as beneficial

Of the 88 participants, 98.8% (n = 87) reported that families would benefit from an occupational therapy department at the EWMSC. Only one family stated that public-sector provision would not be beneficial. This family was currently receiving services and stated that they were satisfied with private sector provision. No other explanation was provided as to why they believed that public-sector OT at this site would not be a benefit.

3.5 Other therapies

Forty-three percent (n = 15) of families approached publicly who were not currently receiving OT (n = 35) were receiving another therapy, most commonly speech therapy (17%, n = 6). As the survey was distributed at a private therapy clinic, all of the families not receiving OT (n = 18) were receiving another therapy, most commonly, speech therapy (89%, n = 16), and behaviour therapy, (22%, n = 4).

3.6 Public-private differentiation

Thirteen out of twenty-two parents whose children were receiving OT, and who were approached at private sector clinics stated that they would utilize public sector services and this was significantly less (p = .003) than 100% (n = 13) of families that were approached at the EWMSC. Reasons included inconvenience (33%), satisfaction with current service (40%), and doubting the efficiency (27%) of the proposed department.

The families who were receiving OT (n = 22) in private sector clinics and who indicated that they would be willing to access public-sector services, cited services being free of charge (n = 13) as the greatest asset, followed by convenience (n = 8). These two reasons were also the most frequently cited by the thirteen families receiving, OT approached publicly (n = 10 & 3 respectively).

3.7 Referral to OT

Of the 48 respondents whose children were not currently receiving occupational therapy intervention, only 27 (56%) had been referred to an occupational therapist. The relatively low referral to OT suggests greater need for advocacy and awareness of the benefits of services for children with disabilities, not only among families, but also among referring professionals.

4 Discussion

The state of the occupational therapy profession in Trinidad is one in which services are increasingly offered privately. This is does not reflect the choice of the occupational therapists to practice in privately-owned clinics, but rather the lack of public-sector positions available to professionals. As more occupational therapists enter the profession, they too will fall into the private-sector pool. The lack of governmental positions limits professional expansion, as well as access to services. However, primary research demonstrates undeniable evidence that parents/caregivers believe that a pediatric public-sector clinic will benefit families of children with special needs in Trinidad. Realization of a clinic would mean that families that cannot afford private services would still have the opportunity to provide their children with treatment that can help them to participate, engage and function optimally in their daily tasks.

The results of the study demonstrate not only the demand for service, but the preferential structure of the department. Haywood, Martinez, Payatak and Carandang (2019) argue that involving patients in occupational therapy research can assist in creating truly client-centered care [13]. Further, advocate for the input of people with disbailities in those issues that affect their lives [14]. In many cases, and particularly in pediatrics, the patient is not only the client as the family is integral. In this study, families expressed desire an occupational therapy department that is outside of the capital, convenient, affordable and efficient.

Offered at the Wendy Fitzwilliam Children’s Hospital, public-sector services will cater for those families outside of the capital, that necessitate services free of charge. A 2017 study [15] completed in the United States demonstrated that the pursuit for public-sector OT services is not restricted to Trinidad. The authors argue that occupational therapy offered at federally qualified health centers can cater to the needs of underserved populations and can contribute to health equity. As in this study, potential barriers included the provision of timely and effective services, adequate referrals and sufficient staff.

In another study, Cada and Kuchler (2008) examine the barriers that children with cerebral palsy face when accessing physical and occupational therapy services [16]. The authors cite obstacles such as finances, availability of therapists, and convenience, which are identical to the concerns raised by parents in the current study.

In the event that the government accepts such research as sufficient to establish a pediatric clinic, the entire profession of occupational therapy stands to benefit. The clinic would create jobs in Governmental positions that never before existed, beginning with pediatrics but possibly expanding to adult physical disability, ergonomics, or even homecare. Future research can provide information from the viewpoint of clinicians as to what expectations they would have as a public-sector employee.

One limitation of this study lies in the research finding that over half of the families whose children were not yet receiving occupational therapy intervention had never been referred to an OT. This suggests underutilization of the proposed clinic as a threat to the development and longevity of the service. However, it is believed that this threat can be averted with a wholesome dissemination plan.

5 Conclusion

Primary research demonstrates the demand for public-sector pediatric occupational therapy treatment. The establishment of such a clinic will benefit families and therapists alike. Families will be able to access services without having to pay steep private sector prices. They will learn ways to advocate for their child, address behaviours and change their environment to increase their child’s independence, wellbeing and happiness. Occupational therapists will increase their visibility in the public-sector and be able to serve those families most in need.

If fulfilled, the pediatric clinic has the possibility of changing the face of healthcare for the most vulnerable population- children with disabilities. Internationally, there is a movement to provide not only medical treatment, but also services that can aid in well-being and quality of life. Occupational therapy is one of these services. Implemented correctly, this clinic can assist the Government in developing the healthcare system of Trinidad and Tobago, increase the reach and influence of occupational therapy, and offer a beacon of hope for children with disabilities and their families.

Conflict of interest

None to report.

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