Abstract
Health professionals need to understand the human rights and health needs of disabled people. This review of evidence on interventions demonstrates that a range of often innovative approaches have been trialled. Lectures by faculty are less effective in changing attitudes than contact with disabled people themselves. Existing examples of good practice need to be scaled up, and better and more long-term evaluations of impact are required.
Keywords:
Background
Disability is a social issue, not just a medical one (CitationShakespeare 2006). But people with disabilities have health needs arising from their primary impairment as well as general health needs (CitationShakespeare 2012) and sometimes a narrower margin of health (CitationWorld Health Organization and World Bank 2011). People with disabilities often do feel healthy and can be successful in managing their own health needs if they receive the appropriate support and information (CitationWatson 2002, CitationNazli 2012). Yet evidence shows that these health needs are not adequately met, due to financial access and attitudinal barriers. Analysis of the World Health Survey showed that people with disabilities were twice as likely to find health care provider skills and equipment inadequate to meet their needs; three times as likely to be denied care; and four times as likely to be treated badly by health care providers (CitationWorld Health Organization and World Bank 2011). This evidence is reinforced by other studies (CitationAulagnier et al. 2005, CitationDorji & Solomon 2009, CitationCervasio 2010, CitationPace et al. 2011). Analysis of the 2006 US Medical Expenditure Panel Survey revealed that people with disabilities were more likely than nondisabled people to think that their doctor had not listened to them, treated them with respect, taken enough time, involved them in treatment decisions or explained treatments properly (CitationSmith 2009). In the UK, the Formal Investigation into Inequalities in Health found that people with mental illness and people with intellectual impairments received a worse service from health professionals, which may have contributed to the poorer outcomes they experienced (CitationDisability Rights Commission 2006).
Given evidence of discomfort, negative attitudes and lack of knowledge on the part of health professionals, there is a need to ensure better training and education about disability (CitationLarson-McNeal et al. 2002, CitationEddey & Robey 2005, CitationChmar et al. 2007, CitationShakespeare et al. 2009, CitationBaker 2011, CitationIezzoni & Long-Bellil 2012, CitationWilkinson et al. 2012, ). Ensuring this is a legal obligation for countries that have ratified the Convention on the Rights of Persons with Disabilities (UN 2006), Article 25 (d) states that States Parties shall:
Require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent by, inter alia, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care.
Bearing this legal standard in mind, the following competencies could be proposed, drawing on CitationKirschner & Curry (2009):
Framing disability within the context of human diversity across the lifespan and within social and cultural environments.
Skills training for assessment of disability and functional consequences of health conditions, considering implications for treatment and management.
Training in general principles concerning etiquette for interactions with persons with disabilities.
Learning about roles of other health care professionals forming integrated teams to care for persons with disabilities.
5 Understanding the legal framework of national anti-discrimination legislation, the Convention on the Rights of Persons with Disabilities, relevant ethical standards, and the principles of reasonable accommodation and universal design.
Competency in patient-centred care approaches, including patients’ perception of quality of life.
Despite efforts to improve professional education on disability, to date there has been no comprehensive overview. The purpose of this paper is to review what has been trialled and, where known, the outcomes of these trials.
Methodology
Electronic database searches were conducted with MedLine, which produced 1666 possible publications. Titles were scanned and abstracts read, to ascertain relevance. Inclusion criteria: relevance to any aspect of: attitudes of health care workers (students or professionals) towards people with any form of disability; teaching methods used to educate students or professionals about disability; disability curriculum content; or integration of disability teaching into existing curricula. Exclusion criteria: articles that dealt solely with clinical issues and papers solely concerned with improving teaching of rehabilitation sciences.
Results
The search produced 192 relevant articles; 106 of these could be accessed online and downloaded as full texts. 48 of these papers concerned a specific, relevant teaching intervention or evaluation, of which five related to in-service training and the remainder to pre-qualification training.
Geographical spread
The search was limited to studies in English or French. 28 papers described interventions in the USA, 12 in the UK, three in Australia and one each in France, Germany, Hong Kong, New Zealand, South Africa, Sweden, and Switzerland.
Different approaches
A variety of approaches to improving attitudes, knowledge and practice have been trialled, often in combination. Starting with the distinction that CitationSymons et al. (2009) make between school-based education, community-based experiences, and clinical experiences, we created a classification based on an inductive analysis (see ). Typical examples are discussed in the following sections, and the results table (see ) summarizes all the included studies.
Figure 1 Approaches to teaching about disability.
Table 1 Summary of included studies.
Conventional lecture or seminar delivered by faculty staff (33 papers)
Teaching on disability is very common. While any training is good, having a few hours teaching about disability is likely to be insufficient to change attitudes, instill required knowledge or develop skills (CitationRichard et al. 2005, CitationDelucia & Davis 2009). Rather than simply relying on didactic instruction, experiential learning with reflective components is recommended for training dental students about care of people with intellectual disabilities (CitationDelucia & Davis 2009). Innovative approaches using computer-based training were reportedly effective (CitationRuiz et al. 2006, CitationKleinert et al. 2007) and can be easier to deliver; for example an interactive module featuring a deaf-blind virtual patient (CitationSanders et al. 2008).
Teaching delivered by disabled people or their family members (15 papers)
Hearing from those with direct experience of disability is likely to make more impact and be more memorable. For example, Monash University medical students engaged with tutors with intellectual disabilities on a three-hour communication workshop, which increased their understanding and comfort levels with this traditionally underserved community (CitationTracy & Iacono 2008). At Leeds University, a series of seminars for medical students on ‘valuing diversity’ were taught, inter alia, by deaf people, disabled people from the local Centre for Integrated Living, people with mental health conditions and people with intellectual disabilities (CitationThistlethwaite & Ewart 2003).
Encounters with patients, advocates or standardized patients (23 papers)
Research with dental students shows that prior experience with people with intellectual disabilities is associated with comfort levels in treating this population (CitationDelucia & Davis 2009). Supervised contact has been found to have more impact on knowledge and attitudes than lectures alone, for example in improving confidence in working with people with intellectual disabilities (CitationAdler et al. 2005). Home visits are typical (CitationSharma et al. 2006, CitationMullen et al. 2010), and various approaches have been successfully trialled, including inter-professional learning (CitationStreet et al. 2007, CitationAnderson et al. 2010). In a more elaborate US project, family medicine clerkship students conducted a series of interviews with standardized patient educators with disabilities that were videoed and discussed in feedback sessions (CitationDuggan et al. 2009). Innovative senior mentoring programmes in South Carolina involved students being paired with an older person to do assignments ranging from clinical assessments to home safety assessments (CitationCorwin et al. 2006).
One-off events are another option. In North Staffordshire, the production of a Toolkit to improve health services for people with intellectual disability (ID) (available at www.keele.ac.uk/depts/ns/toolkitpeopleld) was followed by a workshop, partly led by people with ID themselves (CitationRead & Rushton 2012). A US college of medicine organized a panel of senior citizens to interact with medical students (CitationTandon et al. 2011). Before offering vision screening to Special Olympic athletes with ID, 71.5% of volunteer optometry students and professionals lacked confidence; after a day of training and at least two days’ contact, nearly 80% were confident or very confident at examining this population (CitationAdler et al. 2005).
Virtual engagement has also been attempted. St Bartholemew School of Nursing and Midwifery (London, UK) experimented with an online discussion forum which involved mental health service users educating mental health nursing students in the context of Enquiry-Based Learning (CitationSimpson et al. 2008). Service users were supported to engage with students online and paid a small honorarium. All students and service users interviewed were overwhelmingly positive about the experience.
Placements or visits with community facilities and organizations (nine papers)
Service learning is an experiential learning approach where students learn by doing (CitationGitlow & Flecky 2005). Prior training can enhance the benefits of placement in community facilities, for example with older adults with dementia (CitationFruhauf et al. 2004), and thus improve learning of interaction skills. An Australian study where medical students spent eight weeks on placement in rural special schools led to better understanding of children with special needs (CitationJones & Donald 2007). In Leicester, medical students and social workers had four-week placements in community hospitals, together with training delivered by a Centre for Integrated Living (CitationAnderson et al. 2010).
Simulation exercises (four papers)
A traditional way of changing attitudes is via simulation exercises – for example, spending time in a wheelchair or wearing spectacles that simulate sight loss (CitationCrotty et al. 2000, CitationAmosun et al. 2005) or wearing incontinence undergarments to engender empathy (CitationKarlowicz & Palmer 2006). The goals are to develop interpersonal skills, increase empathy and educate about practical issues, such as accessibility (CitationCrotty et al. 2000). While these experiences seem to be highly valued by participants, there is a risk of seeing disability in individualistic terms. If the main problems of disabled people result from poverty, prejudice and discrimination, then sitting in a wheelchair for half a day is unlikely to result in a full understanding, and may even distort perceptions.
Clinical experience (nine papers)
CitationSymons et al. (2009) argue for the importance of introducing students to caring for patients with disabilities early in their career, and ensuring that disability is integrated throughout the curriculum and at every stage. They suggest that the skills acquired through caring for patients with disabilities are transferrable to other patient care and foster general professionalism. CitationMarkström et al. (2009) found that five-week clinical placements for students in healthcare professions reduced stigma associated with mental illness. Swiss dental students who were able to treat older people reported feeling less pity and frustration than German students, who could observe problems but not help (CitationNitschke et al. 2009).
Continuing education
In-service training has also been successfully trialled. For example, practice nurses in Scotland were trained in the primary healthcare needs of people with intellectual disabilities (CitationMelville et al. 2006) with concrete outcomes. Interdisciplinary experiential training workshops delivered to care staff at a day centre for people with intellectual disabilities improved their communication and interaction with clients (CitationDobson et al. 2002).
Teaching modalities
Inter-professional education appears particularly appropriate for learning about disability, given that disabled people often engage with a multiplicity of different professionals (CitationAnderson et al. 2010). Bringing together social work students with medical students, or nursing students with medical students, or a range of health professional students, has been effective (CitationStreet et al. 2007, CitationMarkström et al. 2009, CitationAnderson et al. 2010, CitationAnderson et al. 2011).
Innovative curricula drawing on the humanities have potential to illuminate and broaden the professional’s understanding of disability (CitationEvans 2002, CitationKaptein & Lyons 2009). For example, an intervention using narratives of hearing loss enabled audiology students to think beyond technical issues and improved their listening skills (CitationBerg et al. 2008). Other interventions have drawn on reflective writing (CitationWestmoreland et al. 2009), cinema (CitationBlock et al. 2005) and performance (CitationKahtan et al. 1994, CitationMcClimens & Scott 2007, CitationShapiro 2011).
Outcomes of interventions
Impact of these interventions was generally assessed by pre- and post-intervention attitudinal change, tests of knowledge, and/or by student feedback (consistently positive, e.g. CitationCrotty et al. (2000) found 96% positive feedback). There is a need for an updated instrument for measuring healthcare professional attitude (CitationLam et al. 2010). Across the included studies, significant improvement in knowledge was common, although this sometimes tailed off over time. However, it was sometimes harder to detect improvements in attitudes when the sole intervention was traditional teaching (CitationRichard et al. 2005, CitationSeccombe 2007, CitationZwahlen et al. 2010).
Across the studies, the most positive evaluations were of opportunities to meet disabled or older people, associated with positive change in attitudes (CitationGitlow & Flecky 2005, CitationDenton et al. 2009, CitationMoroz et al. 2010, CitationAnderson et al. 2011, CitationRead & Rushton 2012), even when only conducted online (CitationSimpson et al. 2008). Spending time in clinical settings (CitationMarkström et al. 2009) is also positively valued, but does not necessarily lead to attitudinal change (CitationRichard et al. 2005, CitationSeccombe 2007).
If students are to take disability seriously, it needs to be part of their assessment. Good practice is to use Standardized Patient Clinical Cases (CitationSaketkoo et al. 2004) or Objective Standardized Clinical Encounters (CitationCrotty et al. 2000, CitationSabharwal et al. 2000, CitationSymons et al. 2009) to assess student learning, with disabled people being trained as standardized patients.
The best measure of effectiveness would be patient-reported satisfaction with health professionals who had undergone a particular form of training. Such longitudinal impact evaluations appear to be absent from the literature.
Discussion
There are many different ways of teaching students about disability, and the included papers often do not give a clear impression of the content and philosophy underlying the interventions. Medical educators themselves may need to examine their own attitudes and understandings (CitationGitlow & Flecky 2005), particularly tutors who are responsible for guiding clinical education.
Achieving a holistic understanding requires meeting healthy disabled and older people and learning from them. Half of the interventions did involve direct contact in a non-clinical setting. However, only 16% of the interventions studied in this paper entailed the disabled person acting as an expert, teaching the students. The greatest learning seems to come when students are encouraged to critically reflect on their experiences (CitationCrotty et al. 2000, Duggan et al. 2009), including their emotional reactions to disability. One-off interventions or lectures are less effective than immersive workshops or combinations of activities. The ‘spiral of learning’ approach, where a range of strategies are used across different years of the medical school curriculum, reinforcing learning points, seems likely to deliver the best outcomes (CitationCorwin et al. 2006, CitationSymons et al. 2009), particularly given that disability is complex and multi-faceted.
Obstacles to improving teaching about disability include clinical overload (CitationDehaitem et al. 2008) and time pressures. Elaborate initiatives may be demanding in terms of preparation and/or delivery (CitationAnderson et al. 2010, CitationCorwin et al. 2006, which raises sustainability questions (CitationBurbank et al. 2006). Innovation in disability teaching may rely on one member of the education team having the necessary knowledge and enthusiasm.
This review included nearly 50 papers describing more than 90 different teaching and learning activities. While we cannot say definitively what works best to improve health professional knowledge and attitudes in the area of disability, it seems clear that learning from success and widespread adoption of good practice is required, if the ambitions of the Convention on the Rights of Persons with Disabilities are to be achieved.
Note
Tom Shakespeare was responsible for the study design, analysis and writing up of this paper. Ira Kleine conducted literature research and reviewed the paper. The review was conducted whilst Tom Shakespeare was a staff member at the World Health Organization and Ira Kleine was an intern at the World Health Organization. The authors alone are responsible for the views expressed in this paper, and they do not necessarily represent the decisions or policies of the World Health Organization. Thanks to John Spencer for comments on the paper.
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