Assessing Service Delivery Systems for Assistive Technology in Brazil using HEART Study quality indicators.

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Assessing Service Delivery Systems for Assistive Technology in Brazil using HEART Study quality indicators. Tulio MAXIMO and Laurence CLIFT Loughborough Design School, Loughborough University, Leicestershire,
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Assessing Service Delivery Systems for Assistive Technology in Brazil using HEART Study quality indicators. Tulio MAXIMO and Laurence CLIFT Loughborough Design School, Loughborough University, Leicestershire, UK Abstract. BACKGROUND: recently in Brazil, there has been investment and improvements in the service delivery system for assistive technology provision. However, there is little documentation of this process, or evidence that users are being involved appropriately. OBJECTIVE: to understand how assistive technology service provision currently functions in Belo Horizonte city, Brazil, in order to provide context-specific interventions and recommendations to improve services. METHOD: Qualitative research design, including visits to key institutions and semi-structured interviews with key stakeholders. Interview questions were divided with two purposes: 1) Exploratory, aiming to understand present service functioning; 2) Evaluative, aiming to assess staff difficulties in applying existing best practice. RESULTS: Assistive Technology services in Belo Horizonte fall under the medical model definition of the service delivery system developed by AAATE. It was also found that staff lack training and knowledge support to assess user requirements and to involve them during the decision - making process. Additionally, there is no follow-up stage after the device is delivered. CONCLUSIONS: The study clearly defines the service provision function and the staff difficulties at Belo Horizonte city, providing information for further studies. Keywords. Service Delivery System, Assistive Technology, User Influence. 1. Introduction 1.1. Research aims This research aims to understand how assistive technology service provision functions in Belo Horizonte city, Brazil, in order to provide context-specific interventions and recommendations to improve the design of current assistive technology services. The research comprises three main stages: an exploratory stage to understand the systems and identify a research focus; a preparatory stage to set the parameters for an intervention; and a testing stage to test and improve the intervention. This paper describes the exploratory stage. The results and views here published are totally independent from the sponsors and the institutions taking part. The authors had no association with the institutions involved or sponsoring any research previous to this research. 1 1.2. The definitions of the term assistive technology One widely used definition of assistive technology is recommended by the Association for the Advancement of Assistive Technology in Europe (AAATE), which states: Assistive Technology is an umbrella term indicating any product or technology-based service that enables people of all ages with activity limitations in their daily life, education, work or leisure [1]. Confusion is often present in with regard to the definition and terms used to refer to assistive technologies in Brazil. Common terms used are ajudas técnicas, tecnologia assistiva and tecnologia de apoio. While the term ajudas técnicas frequently make reference only to devices, the terms tecnologia assistiva and tecnologia de apoio often covers services and methodologies. The term ajudas técnicas is the one used on federal decrees [2,3]. Despite the differences between the terms they are often used as synonyms [4]. For present purposes, devices will be distinguished from services by using the terms assistive technology devices (ATD) to refer to the devices, assistive technology services (AT services) to refer to the services and Service Delivery System (SDS) to refer to the system that provides both ATD and AT services The Health Care and the Assistive Technology Provision in Brazil Health care in Brazil is provided by a complex of system and subsystems of public and private care [5]. Brazil is the only country with a population larger than 100 million inhabitants to declare healthcare as a duty of the State and a civil right [6]. The Brazilian national health service (Serviço Único de Saude SUS) is the only health service option for over 150 million Brazilians, nearly three-quarters of the Brazilian population [7]. The service started providing assistive technologies devices (ATD) as early as 2002 and, as recently as 2007, the orthotics and prosthetics department had a demand of 1,042,000 people waiting to receive a device [8]. In the following year, the United Nation Convention on the Rights of Persons with Disabilities (UN CRPD) was ratified in Brazil. Later in 2009, the UN CRPD was published in the federal decree 6.949/2009 giving the convention power of Constitutional Amendment [9]. In order to pave the way for the UN CRPD to function by means of public policies the government created in 2011 the national plan for the rights of disabled people Viver Sem Limites (VSL) with investment estimates around US $3.52bn for the first four years of the program [10]. VSL articulates policies regarding social inclusion, access to education, accessibility and health care. The VSL policies regarding the health care sector, which was the focus of this study, includes disability identification and early intervention programs, developing therapeutic guidelines, the creation of a net of rehabilitation centres, creation of orthopaedic workshops, creation of odontology centres, and capacitation of professionals working at these different centres [10]. Various resources were made available to promote ATD acquisition, AT services and to the Service Delivery System (SDS) used to provide them. As a consequence, ATD acquisition has boomed in Brazil since the start of the program. For example, 36,722 wheelchairs were delivered in 2011 compared to 19,890 delivered in 2008 [11]. It should be noted, however, that all these improvements are recent and there is a lack of research and data available, apart from government publications, regarding the 2 functioning of these services. Also, there is a lack of research and publication investigating whether user requirements and SDS best practices are being considered and implemented. Europe has a long tradition in the provision of ATDs and AT services by means of public health services [1,12,13]. An example of this tradition is the Horizontal European Activities in Rehabilitation Technology (HEART), a Research and Development programme promoted by the European Commission. The HEART Study was carried out between 1993 and 1995 by a consortium of 21 institutions, organizations and companies in 12 countries, under the leadership of the Swedish Institute of Assistive Technology [13]. The goal was to survey the present situation regarding assistive technology in Europe and to propose actions to encourage cooperation, convergence and exchange. Overall, it produced over 50 reports, books and brochures. The findings and recommendations are still valid for analysing the service delivery systems in place today as well as for discussing roadmaps for improvement [1,12,13]. The research presented in this paper focuses on the ATD and AT services provided by means of the SUS SDS, classifying existing SDS in Belo Horizonte, Brazil, using European theoretical frameworks developed by the Association for the Advancement of Assistive Technology in Europe (AAATE) and the European Assistive Technology Information Network (EASTIN) [1], both institutions being directly involved in the HEART study. These were employed with the HEART study user influence quality indicator to assess the current state of services in Belo Horizonte city, Brazil. The user influence is defined in AAATE and EASTIN [1] as: A service delivery system takes advantage of the user influence when it empowers, actively involves and makes the user participate in responsibilities in all decisional processes related to assistive technology interventions. The lack of user involvement exposes the process to the risk of wrong or ineffective intervention, abandonment of the devices provided and waste of resources. User influence indicators include the presence and strength of user organisations, the availability of juridical protection of the user s rights, the involvement of users at a policy level, the user empowerment during the individual assessment, communication with the user in the service delivery process and the influence of the user on decisions in the process. It worth mentioning that other models and frameworks rather than AAATE were considered, such as Cook and Hussey s Human Activity Assistive Technology [14] and Gelderblom et al Matching the Person and Technology [15]. The main reason for selecting AAATE model is that it focuses on SDS, providing clear quality indicators for assessing them Why Belo Horizonte City? Brazil is a continent sized country in South America with an estimated population of more than 204m inhabitants [16], of which 84% live in urban areas [17]. The Brazilian healthcare service, SUS, is structured to function similarly across the whole country. The system is integrated into the municipalities, states and union services. Despite great centralization of SUS management in the past, the focus has shifted from union level to a shared responsibility between union, estate and municipality levels [18]. 3 Consequently, it has become more important to understand the municipality context in order to investigate its current issues and provide context-specific interventions. Belo Horizonte is the capital of Minas Gerais state, with an estimated population of 2,502,557 persons [19]. The Belo Horizonte municipalities have the greater concentration of disabled population in Minas Gerais, following the national trend of the disabled population being concentrated in urban areas [20]. A hypothesis that might explain this is the greater infrastructure of education, health and transport available in urban areas [21]. Like the rest of the country, Belo Horizonte represents a heterogeneous, unequal and complex space that needs to be understood [21]. Following the national trend of growing investment in order to overcome the restrained demand, ATD provision in Belo Horizonte has increased from 2,722 devices provided to 2,717 users in 2008 to 3,503 devices provided to 3,299 users in 2012, according to data from Belo Horizonte Municipal Health Office (Secretaria Municipal de Saúde SMSA)[22]. 2. Methodology The following research questions have driven the research design and methods selection for this exploratory stage: What are the characteristics of the existing assistive technology services provided by SUS in Belo Horizonte city? To what extent does the current assistive technology service provided by SUS in Belo Horizonte city apply user-centred service provision best practice? Qualitative data were collected by visiting major institutions providing AT services in Belo Horizonte city (n=5) and conducting semi-structured interviews with the stakeholders directly involved in these services (n=28). Information collected was confirmed in the preparatory stage study, with further interviews (n=12) and participant observation (n=128) during a period of three months at three main public institutions providing AT services in Belo Horizonte city. In order to have a better understanding of an AT SDS, various authors suggest that different roles and professions must be consulted [1, 23, 24, 25]. Theoretical sampling was used to identify the key participants to be interviewed. Participants to be interviewed were defined from the pilot study (n=7) where the main occupations working with assistive technology at Belo Horizonte SUS were identified and the interview schedule tested and improved. Participants were healthy individuals, aged years, working as occupational therapists, physiotherapists, service administrators, service coordinators, assistive technology suppliers and assistive technology technicians. The population studied was from Belo Horizonte city in Minas Gerais estate, Brazil. The institutions included in the study were grounded from the literature, which identified the main institutions proving AT public service provision in Belo Horizonte city by means of SUS, which were: 4 Centro Geral de Reabilitação (Municipality accountability). CReab Leste (Municipality accountability). CReab Norte (Municipality accountability). Associação Mineira de Reabilitação (AMR) (Philanthropic accountability). Coordenação de rehabilitação (Municipality accountability). The first three institutions described are the rehabilitation centres providing AT services to the SUS in Belo Horizonte. AMR is a Philanthropic institution providing ATDs and AT services in Belo Horizonte and also a SUS s supplier for ATDs and AT services. Coordenação de Rehabilitação is the public institution which is responsible for coordinating the SUS rehabilitation centres and contracting the AT suppliers, among other duties. To protect the rehabilitation centres identity they are referred in this publication by a given random number. All interviews were conducted by the same researcher, in Portuguese language and guided by the use of interview schedules. The audio records from the interviews were transcribed using transcription conventions adapted from Josetti [26] and coded using a thematic analysis approach to identify key topics. Ethical approval was gained from ethical committee departments of Loughborough University, Belo Horizonte Municipal Health Office and Plataforma Brasil (CAAE: ), the latter of which is the official means for getting approval to conduct research at SUS. Data collected in the fieldwork were uploaded in the qualitative data analysis software NVivo, version Design of Interviews schedule and analyse approach Semi-structured interviews were designed to identify issues with the SDS, and to invite interviewees to evaluate their experiences of it. The interview schedule was therefore divided in two parts, which were analysed using different approaches to the thematic analysis. The first part enclosed questions with exploratory purpose and was analysed using an inductive approach, in which identified categories were strongly linked to data [27]. Exploratory questions related to the functioning of the service, type of ATD provided and staff difficulties and opinions towards service improvement. The second part of the interview included evaluative questions and was analysed using a deductive approach, for which categories were defined prior to data collection [27]. Questions were related to the implementation of the HEART Study recommendations [1, 13]. It was found that assessing the entire set of HEART Study s quality indicators would undermine the study s exploratory goal, due to the large amount of information necessary to be collected in order to cover all aspects of the service. For this reason this study focused assessing solely the user influence quality indicator. Two different interview schedules were developed in this study. One interview schedule was developed specific to the service administrative and coordination staff. The other interview schedule was developed specific to the medical staff, AT technician and supplier s staff. Whilst both interview schedules contained both exploratory and evaluative questions, the administrative/coordination staff schedule focused on exploratory questions while the other schedule focused on evaluative questions. 5 3. Findings and Discussion 3.1. Service Delivery System Functioning The SDS for public provision of ATD and AT services in Brazil occurs by means of rehabilitation centres at the secondary level of care. AT for public provision can be prescribed by occupational therapists, physiotherapists, orthopaedic practitioners, physicians or physiatrists. Referrals are accepted from both private and public medical institutions. Nonetheless, every person should be reassessed at SUS s rehabilitation centres for the identification of an assistive solution, which describes the set of human and technology supports needed by an individual to compensate for disablement and participate in society on equal footing [1]. This assistive solution is limited to a list of devices called the SIA/SUS list, describing the device specifications and established price. The list contains 95 items, adaptations and substitutions to be provided without any cost to the user. (See Table 1). It is worth mentioning that there are other items of ATDs and AT services guaranteed by law [2,3] not included on this list, such as devices and human support to facilitate education and work. This research focused on the ATDs delivered at the rehabilitation centres by means of the SIA/SUS list. Table 1. Types of Assistive Technology included on SIA/SUS list. Type of Assistive Technology Variety Type of Assistive Technology Variety Bath Chair 4 Prosthetics for the lower limbs 11 Cane 1 Prosthetics for the upper limbs 12 Crutches 2 Prosthetic parts (for the lower limbs) 4 Inner Sole 4 Prosthetic parts (for the upper limbs) 4 Orthotics used at the cervical region 2 Shoes 5 Orthotics used at the lower limbs 12 Walking Frame 1 Orthotics used at the pelvic and lower limbs 3 Wheelchairs 5 Orthotics used at the pelvic region 3 Wheelchair Adaptations 8 Orthotics used at the thoracic and back region 10 White Stick 1 Orthotics used at the upper limbs 3 Assistive Technology provision in Belo Horizonte SUS conforms to the medical model of service delivery, as defined by AAATE, in which the prescription of an AT device is the responsibility of a qualified professional and AT eligible for public provision is usually regulated by a list of products or product specifications, with or without established prices or reimbursement thresholds [1]. Confusion could arise with the definition of the medical model of disability. A medical model of disability implies that people are disabled as a consequence of their own condition, and seeks to either remedy the impairment through medication, rehabilitation and surgery, etc., or through adaptive aids and equipment [28]. While the AAATE classification indicates an organizational model to differentiate existing approaches to AT SDS, the data indicates an outdated approach towards disability. It does not mean that Brazil fits both classifications. On the contrary, the publication of UN CRPD as a federal decree and the VSL investments in the areas of social inclusion, access to education, accessibility and health care give reason to believe that Brazil is moving towards a social model of disability, which sees people as disabled or enabled by the social context in which they function and proposes that changes in the social context or environment can remove or alleviate disability. 6 3.2. User Pathways to access assistive technology In Belo Horizonte city, SDS for public AT provision occurs by means of three SUS rehabilitation centres called CReab (an abbreviation for centro de reabilitação). A user s pathway to access the ATs after being referred to the CReabs was outlined during an initial interview with a member of staff coordinating the three CReabs in Belo Horizonte. Visits to each CReab institution with further interviews and participant observations at preparatory stage were then used to confirm this information and to investigate the specific realities of each location. In their first visit to the service, the users go through a screening process on a firstcome, first-served basis. This screening consists mostly of the users bringing their referral, having their requirements quickly assessed and being scheduled to the necessary services. When referral relates to an ATD, users are scheduled to an assessment specific to their referral, and the procedure varies according to the type of ATD and the centre providing them (see Figure 1 and 2). The pathway was found to be similar in two centres (see Figure 1), which varied in some aspects from the other centre (see Figure 2). One difference relates to the splints and upper limbs orthotics offered. In
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