Implementing the World Report on Disability in Malaysia: A student-led service to promote knowledge and innovation

Abstract

The lead article by puts forward pertinent issues facing the speech-language pathology profession raised by the World Report on Disability. This paper continues the discussion by reporting on a capacity building action research study on the development, implementation, and evaluation of a new approach to early intervention speech-language pathology through clinical education in Malaysia. This research evaluated a student-led service in community-based rehabilitation that supplemented existing and more typical institution-based services. A Malaysian community-based rehabilitation project was chosen due to its emphasis on increasing the equitability and accessibility of services for people with disabilities which was a catalyst for this research. Also, expanding awareness-building, education, and training activities about communication disability was important. The intention was to provide students with experience of working in such settings, and facilitate their development as advocates for broadening the scope of practice of speech-language pathology services in Malaysia. This article focuses on the findings pertaining to the collaborative process and the learning experiences of the adult participants. Through reflection on the positive achievements, as well as some failures, it aims to provide deeper understanding of the use of such a model.

Keywords::

• World Report on Disability
• World Health Organization
• Learning
• community-based rehabilitation
• student-led services

Introduction

One of the key themes raised by the lead article (Wylie, McAllister, Davidson, & Marshall, 2013) was how to involve speech-language pathologists in service delivery models with better accessibility to underserved people with communication disabilities (PWCD). Table III in the article lists key aspects of service delivery (e.g., the need for services to be culturally appropriate) and key parameters to be considered (e.g., service location, level of intervention targeted, the agent of service delivery, and the focus of intervention). A serious consideration of these aspects is indeed critical for service development. In response, this paper reports a creative example of a student-led specialist service located within community-based rehabilitation (CBR), in Malaysia, for children with communication disabilities and families. This service was administered in collaboration with mid-level CBR workers, and, in this sense, parallelled the World Report on Disability's (World Health Organization and The World Bank, 2011) emphasis on the importance of these workers being well-trained and supported.

Background

Speech-language pathologists (SLPs) are known by various names in different countries; in Malaysia, the term speech-language pathologist is used. There are currently two local undergraduate programs graduating SLPs. An estimated half of the local graduates serve in general and university hospitals throughout the country. The remaining half typically work in traditional institution-based speech-language pathology settings in the private sector, non-governmental organizations, and in neighbouring countries, mainly in Singapore. A small portion of the present workforce is also made up of graduates from overseas institutions. In 2009, the Department of Audiology and Speech Sciences, Universiti Kebangsaan Malaysia estimated a ratio of one SLP per 150,000 people in Malaysia. This figure suggests the need for innovations in service delivery beyond traditional models; that is, models typically used in high-income countries.

The community-based rehabilitation (CBR) approach is a strategy that seeks to promote “the rehabilitation, equalization of opportunities and social inclusion of all PWD [people with disabilities]” (World Health Organization, International Labour Organization, & United Nations Educational Social and Cultural Organisation, 2004, p. 2). CBR was introduced in Malaysia in 1983 through collaboration between the Department of Social Welfare (DSW) and the World Health Organization (WHO) in Kuala Terengganu. Since that implementation, CBR has been recognized as an alternative approach to disability management. The DSW now has 428 centres across Malaysia, with a total of 18,943 PWD receiving services (Department of Social Welfare, 2011). The services provided characteristically encompass health (e.g., rehabilitation), education (e.g., early child education, vocational training), and some social (e.g., sports and recreation) activities (DSW, 2011). CBR centres are typically managed by a local committee with an annual stipend and some basic training for CBR workers provided by the DSW. CBR workers in Malaysia are expected to function more as mid-level workers, being expected to provide impairment-focused rehabilitation and education services under guidance from relevant professionals (Department of Social Welfare, 2003). Thus, Malaysia, similar to other developing nations, has responded to the lack of relevant professional resources by establishing mid-level programs. At the same time, these workers receive limited training (Kuno, 2007). Furthermore, the very low numbers of rehabilitation professionals currently involved in grassroots-level CBR work means that services at best address only mild-to-moderate disability (Kuno, 2007).

Student-led services are an innovative way of implementing services of benefit to both the community and the students. For instance, academic nurse clinics in the community have provided community-based healthcare experiences for student nurses, while offering low-cost services to disadvantaged communities (Ponto, Paloranta, & Akroyd, 2011). The term student-led refers to the fact that these services may be provided primarily through students who take on leadership roles. This term also indicates that a principal function of these services is to provide clinical education opportunities. Such student-led services ultimately prepare a workforce with particular skills for contemporary practice settings (McAllister, 2005). Student-led services offer opportunities for contextually based training, research, and even faculty practice (Ponto et al., 2011). In Majority World countries, with newly- established allied health professions, innovative student-led services can provide opportunities for students to practice in non-traditional settings that are relevant for these countries, rather than duplicating traditional models from the Minority World (Wickenden, Hartley, Kariyakaranawa, & Kodikara, 2003). At the same time, challenges exist; for instance, taking on service establishment responsibilities while still learning one's own professional role (Friedland, Polatajko, & Gage, 2001).

This article will describe mixed-method action research that explored the implementation of student-led services in a Malaysian CBR centre. Although multi-source data were collected during this research, this article will focus on findings arising from the qualitative data related to the learning experiences of the adult participants. The aim will be to highlight aspects of adult learning associated with this model that may influence services and practices that are responsive to the needs of under-served PWCD.

Method

This research was conducted in an urban Malaysian CBR centre where 40 PWD were registered. Of these, there were 19 children below 6 years of age, and nine school-age children (including adolescents) with a range of developmental disabilities. The centre was staffed by five CBR workers, three of whom were mothers of children with disabilities.

The use of action research facilitated inclusion of perspectives from multiple stakeholders. The participants who were directly involved in the research process comprised the principal investigator (PI) (lead author), five mother–child dyads (selected using maximum variation purposive sampling), five CBR workers, two final-year SLP students, the secretary of the central CBR stakeholder committee, and three additional parent participants. The PI's involvement with the CBR centre commenced with the project. While active collaboration of all stakeholders was sought, the PI assumed overall responsibility for the successful completion of this project, which included responsibility for the selection of the evaluation tools, data collection, and analysis. Adopting this “co-operative” model of participation (Herr & Anderson, 2005, p. 40) facilitated engagement by all other research participants, since it lessened demands on their time and resources.

Participant observations, interviews, and child assessments constituted the initial needs assessment. This found that CBR activities were centre-based and ran 5 days a week. Activities were conducted in one moderately-sized room under extremely noisy conditions and with a limited set of appropriate resources. In addition, workers were found to have limited training in rehabilitation, especially communication rehabilitation. At times, they appeared to function more as child minders; that is, temporarily relieving families from caregiving duties a few hours each day. Two action cycles, spanning a year, were planned and conducted. In Cycle 1, the stakeholder committee decided that the PI provide impairment-focused SLP services which actively involved CBR workers and parents. This included the decision that workers perform the role of assistants to build their understanding and skills of SLP. The growth of mutuality in Cycle 1 was associated with changes in interaction between participants and the development of a shared language for intervention and common values. For instance, the shared understandings that developed as a consequence of the children using augmentative and alternative communication (AAC) strategies helped knit this community as common advocates for such measures. Better trust smoothed the entry of the students in Cycle 2. Students were only involved in the second action cycle as the initial needs assessment highlighted that the first cycle required the establishment of trust, mutuality, and co-operation between the PI and CBR participants. This was critical as this research involved the introduction of not only students, but also a new service, SLP, to the CBR centre. Taking time to develop trustful relationships ensured that the second cycle could focus on the introduction of the student-led service. Without this, the development of shared understandings that helped re-define roles and responsibilities and create unified goals of benefit to the children would have been impossible. The activities conducted during these two cycles included individual and group therapy, planning and review sessions with CBR workers, home and community visits, and, finally, worker and parent training workshops.

Data were gathered from the various stakeholders by a combination of qualitative methods (involving semi-structured individual and group interviews, reflective journals, and participant observations), and quantitative methods (involving surveys, visual analogue scales, and child assessments). The data reported in this article were qualitative and analysed using thematic analysis informed by the work of scholars in hermeneutics (Bentz & Shapiro, 1998).

Results

The findings focus on learning as it relates to the key themes arising from the data. The first section explores these themes as they relate to the different adult research participants. Section two highlights the impact of the complex non-traditional CBR context on learning to illustrate one example of how outcomes were not always positive.

Section 1: Learning

Adult learning experiences encompassed both learning from a student perspective, and learning as it related to all stakeholders, including the PI. Time was a key element in this research since time was needed to forge trustful relationships and mutual understandings. This approach was congruent with current literature (Rist, Chiddambaranathan, Escobar, & Wiesmann, 2006) investigating the nature of social learning platforms and finding such approaches requiring longer time frames to accommodate sensitive negotiations and the establishment of trust. In addition, the informal nature of the CBR centre helped create less hierarchical relationships between service providers and recipients. Their combined effect supported the development of mutuality, trust, and co-operation that was the foundation for a two-way learning process involving service providers (the PI and students) and CBR participants (workers and parents) learning from each other.

Learning from each other. All participants provided feedback that indicated the learning process was two-way. Predictably, CBR participants acknowledged growing understandings and competencies, especially with regard to the new technologies introduced (e.g., AAC, positive behaviour management practices, and language stimulation techniques). Nevertheless, they appeared to recognize their own contribution to the learning process. For instance, a CBR worker commented on the reciprocal relationship thus:

The two students are definitely good. They both possess ability and they definitely know how to make use of what they have learned for the children. I can learn from [them], but at times they don't seem to know much about children with disabilities, probably because they have little experience with such children. One of them, for instance, does not yet know how to manage [undesirable behaviour of] such children.

We have the experience of the children, while they [the students] have the knowledge [and skills about communication disability]. [Therefore] we get to exchange this information, so this helps the children to develop further. (Group Interview)

Here, the worker, besides articulating the teaching–learning relationship she experienced, also demonstrated an ability to critically reflect on the situation. Indeed, among the CBR participants, there was evidence of a valuing of their own practice, that is, becoming more aware of the value of some aspects of their own knowledge and practice. This gave them the ability to provide practical insights to service providers, which aided the creation of new understandings. Similarly, both students identified a positive two-way learning process. For example, one student noted that her better knowledge and skills about SLP practice allowed her multiple opportunities to, for instance, teach workers about “setting goals” since they conducted “activities without any goals”. Conversely, she perceived herself as learning from the workers, for instance, “how to use different types of voice and intonation patterns with different children” (Group Interview).

Learning through negotiation and compromise. Another defining feature of the CBR setting was the learning that arose through negotiation and compromise necessary for the process of service development. For instance, particular resistances to the service by CBR participants helped create shared understandings for everyone involved through negotiation and compromise. For example, there were initial differences of opinion about where therapy sessions should be located. The PI's suggestion for the use of an adjacent room, which was less noisy, met with resistance from some workers. They were concerned about having to take children along the parking lot to the room, leaving fewer workers to manage the remaining children in the main room. Instead they suggested using the makeshift partitions at the centre to section off space for SLP sessions. Agreeing to this compromise allowed the workers a learning experience of conducting communication therapy in noisy surroundings. Indeed, after some time, it was these workers who independently initiated the shift to the adjacent room. This example demonstrated that dissent by itself did not imply a lack of partnership, as long as negotiations continued (Dale, 1996).

For the students, the non-traditional setting increased the likelihood of difficulties such as poor child attendance and parent commitment and collaboration with the SLP program, making the students’ relationship with the parents more complex. One student expressed this by noting that the parents treated her “like a CBR worker” and this diminished her authority “as a professional”. Indeed, she reported that this sometimes led to her “suggestions not [being] taken seriously” (Group Interview). Over time, this placement gave both students opportunities to listen and work with dissenting views in a more informal role relationship with parents. The above student recorded her growing competence in negotiating with other team members and her ability to recognize each team member's unique role in the partnership. She valued the relationships she had developed and ultimately noted, “that an SLP's role was to empower the parents, not to take over their responsibility” (Journal).

Learning to empathize. The community setting facilitated, in both students, more holistic understandings of clients’ needs and responsibility for client care. For instance, one student noted how she had learnt from the workers to perceive children with disabilities more holistically:

The workers, some who have children with disabilities, view the children as capable of developing and learning. They are happy even with the slightest changes. So, I feel they helped me to see the children as someone who can contribute and become a part of the community. (Group Interview)

One student, in particular, extensively recorded her growing empathy for clients, care-givers, and workers. For instance, she described home visits as being a real “eye-opener” for her. This was different from her previous placements, where she had just been “sitting in the therapy room”. The community setting had allowed her to “imagine and empathize” with the real world difficulties her clients and their families faced (Journal). These findings resonated with the PI's perceptions and parallelled findings in the literature about the experience of students working in community settings (Bossers, Cook, Polatajko, & Laine, 1997). Thus, under-served community settings may have the potential to develop interpersonal skills such as empathy, an important competence for SLPs (Beecham, 2005).

Learning to critically reflect. The CBR context of multiple stakeholders, each with different perspectives, developed individual learners’ critical reflection abilities. This was because participants became more aware and adept at articulating their own perspectives in the context of multiple perspectives. For instance, one student commented about her efforts at using jargon-free language when sharing understandings with CBR participants. Another student reflected on the comprehensiveness of knowledge available for service delivery since both parents and workers provided input. A final example was when one of the mothers reflected upon and adapted student recommendations about child behaviour management to suit her particular situation and, thus, contributed to new understandings for all concerned. Thus, the development of self-reflection as a consequence of social learning empowered all participants.

Section 2: Addressing individual learning ability in the complex CBR environment

A theme that was apparent through the project was the interplaying between CBR complexity and the ability and willingness of individual participants to learn. Potential tensions and conflicts arose because of differing personal and institutional interests. Further to this, the community was a disadvantaged one with limited resources. Indeed, all the participants, including the PI, were involved in a social learning process that required compromises associated with targets aimed for rather than perfectly achieved. In this research it was evident that individual capacity for learning and levels of knowledge interplayed with complexity to produce negative outcomes. One key example is used to illustrate this.

Both students identified the placement as a complex one, noting particular difficulties in negotiating issues with parents and managing clients with complex needs. However, for one student, the relatively unstructured, complex nature of the placement frequently overwhelmed her. She commented, “The down side of this placement was the situation. Nothing was set up” (Group Interview). For instance, she described a particularly difficult session with a child as “the most unforgettable incident” of her placement since her inability to manage this child in the unstructured setting had resulted in a negative parental “perception” of her clinical skills (Journal). This sense of being overwhelmed was also related to her poorer practice and critical reflection skills. Nevertheless, the complex environment accentuated this inability to appropriately respond to clinical situations, causing greater anxiety which hampered her ability to learn. This is congruent with findings from Anderson (1988), who noted that high levels of anxiety may “distract or inhibit learning” (p. 77). A way of addressing this would have been to increase the scaffolded learning for this student. However, this was difficult to achieve in the complex CBR environment. This example highlights the need for careful consideration in establishing placements for students in non-traditional settings. For instance, establishing different selection criteria for student engagement in such complex placements may have averted this situation. Alternatively, a different approach to preparation may have helped the student more readily acclimatize. Finally, greater preparation involving initial direct instruction and coaching could also have been provided to this student.

Final reflections

This action research project demonstrated that student-led services in a Malaysian CBR centre appeared to support learning for all adult stakeholders. For example, workers had developed skills and practices that supported SLP services for children in the centre. This underlined the value of up-skilling CBR mid-level workers so that they have transferable and generalizable skills and more understandings about disability (WHO & The World Bank, 2011). Conversely, students acquired inter-personal competencies and grew in critical reflection as a consequence of partnering with CBR workers. Partnerships were also forged between higher education providers, clinical supervisors, and CBR participants. This is important as it enhanced educators’ knowledge of CBR. For instance, both the university and the PI gained a better understanding of community-based issues and how best to work with children and families from a low-to-mid-income community group. It also highlighted the challenge of SLP services for people attending CBR programs. Also, the introduction of a student-led service awakened the potential for future practice in CBR. That is, student experiences of placements in CBR may lead them to practice in these settings. However, it is critical that these experiences be implemented in such a way that they support positive student learning experiences if they are not to have the opposite effect.

In conclusion, pioneering education models have the potential to move the profession in innovative directions. For example, this particular model brought services into a context in which services had not previously been provided. This created learning opportunities for both service providers as well as recipients. Furthermore, a CBR location of service delivery was relevant for Malaysian SLP services and in line with WRD principles of adequately supporting mid-level CBR workers. At the same time, it would be interesting to track if, in reality, innovative student placements such as this one eventually contribute towards the evolution of new or innovative services. How could the profession devise mechanisms to look at the long-term impact of such placements? In addition, the evidence-base of service innovations must be built up. For instance, would there truly be a bigger impact for PWCD, if SLPs practiced in CBR in Malaysia? Would it eventually provide more accessible services for under-served groups or impact equity? These questions can only be answered by the profession, as the lead article suggests, by seriously reflecting on service and clinical education approaches through time and building up the evidence on approaches that better address needs and achieve equity in service provision for PWCD.

Declaration of Interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.