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Involving people with spinal cord injuries in the education of rehabilitation professionals
Thilo KroU, Suzanne L Groah, Brenda Gilmore, Melinda T Neri. Matthew W EIrod. Alexander Lihin The Consumer Professional Partnership Programme (CPPP) was developed to increase service user participation of people with spinal cord injury in the education of rehabilitation professionals. The programme seeks to inform physiotherapists and other rehabilitation professionals about disability and health issues from the perspective of individuals with spinal cord injury. This article discusses its development, describes the details and rational behind the programme and reports on first experiences of rehabilitation professionsals using the programme. Keywords: disability, consumer participation, education, spinal cord injury, consumer professional partnership programme Kroll I Groah 5, Gilmore B, Neri M, EIrod M, Libin A (2007) Involving people with spinal cord injuries in the education of rehabilitation professionals. Int J Ther Rehabil 14(7): 299-305

ealth-care professionals increasingly recognize the benefits of involving patients or service users in making decisions about their health care, and in some cases service users are being involved as partners in the delivery of health interventions. Service user involvement is also increasingly emphasized in research focused on service re-design and development (Oliver et al, 2004). Research has identified that people with disabilities frequently feel misunderstood have the impression that their needs are not being heard and feel that health professionals have different ideas and priorities with regard to treatment goals and outcomes (Kroll et al, 2003; Patrick et al, 1983). Service users in particular, have expressed concerns about inappropriate communication, assistance, and understanding of their disability (Kroli et al, 2006; Neri and Kroll. 2003). These issues can be summarily understood as a lack of'disability literacy' (Scheeret al, 2002). Rationale for programme development The number of individuals with a chronic or disabling condition has been steadily increasing in the United States (US) (Kaye et al, 1996; Rehabilitation Research and Training Center on Disability Demographics and Statistics. 2005). There are at least 200 0(X) people living with a spinal cord injury (SCI) in the United States (National Center for Injury Prevention and Control, 2001). The Consumer Professional Partnership

Programme (CPPP) was developed coilaboratively among health professionals, researchers and people with SCI at the National Rehabilitation Hospital (NRH) in Washington DC, United States. The team at the NRH developed the CPPP with a primary focus on people with SCI. The rationale to focus on SCI eame fi^om the recognition that individuals with SCI are now living longer, with survival beginning to approximate that of the general population (DeVivo et al, 1999; DeVivo and Stover, 1995; Groah et al, 2(K) I; Whiteneck et al. 1992). At the same time there is an increasing prevalence of secondary conditions among people with SCI as the process of aging, together with physical disability, has contributed to a greater occurrence of secondary conditions than that seen in the general population (Capoor and Stein, 2005; McKinley et al, 1999). Contributing to and complicating the issue is the reality that this population has low levels of physical conditioning (Bauman and Spungen, 2000; Karlsson et al, 1995), with the SCI population ranking at the lowest end of the fitness spectrum, as suggested by some studies from the US (Levine et al 1992; Maki et al. 1995). This is a result of a combination of factors including the limitations imposed by the physical disability and multiple barriers (stxietai, geographical and attitudinal) to participation in physical activity. Finally, clinical staff at the NRH had observed that, owing to shortened inpatient treatment periods, physiotherapists, occupational therapists and

Thilo Krolt is Senior Lecturer, Alliance for Self Care Research, University of Dundee, School of Nursing & Midwifery. Dundee, Scotland. UK, Mellnda T Neri, is Research Associate, Oregon Institute on Disability and Development, Oregon Health & Science University. Portland Suzanne L Groah is Director SCI Research Progranime, Brenda Gilmore is SCI Life Bducator, Matthew W EIrod is Neuroscience Research Center Coordinator and Senior Physiotherapist and Alexander IJbin is CPPP Programme Coordinator, Nalional Rehabilitation Hospital (NRH). Research Division, Washington, DC

Correspondence lo Thilo Kroll: I. krolKdidundee. ac. uk

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other health professionals have less time to develop a detailed understanding of the living sittiation of peopie with SCI after discharge from hospital. Fewer opportunities for practitioners to learn from patients about their preferences and priorities, and to gain insight into their living circumstances, were also observed. Programme setting and staff involvement The NRH is a large rehabilitation provider in the Washington-Baltimore metropolitan area. The CPPP for SCI was developed by a multidisciplinary team at the hospital, consisting of: an individual with SCI, psychologist, physician, sociologist, physiotherapist, occupational therapist, recreational therapist, social worker and vocational rehabilitation specialist. The programme was developed with thefollowingprincipal aims: a to involve individuals with SCI in the education and continuing education of rehabilitation professionals b to create a flexible education curriculum that could be customized to meet institutional and
Figure 1. Modular structure o/ f^e Consumer Professional Partuersbip Programme for spinal card injury

individual needs c to develop a forum for dialogue between rehabilitation professionals and their clients. d to enhance disability- and SCl-specific knowledge among rehabilitation professional practitioners and other health-care professionals e to raise awareness in the rehabilitation profession of consumer-defined strategies for the prevention of secondary conditions and the promotion of active physical exercise and health. To the authors' knowledge the programme is the first of it's kind to be offered to rehabilitation practitioners.

PROGRAMME DESIGN
Programme structure The CPPP was developed around a modular structure for maximum flexibility in the combination of educational elements and ease of implementation. Depending on specific educational objectives (i.e. disability awareness, exercise, prevention of secondary conditions), modules and presentations can be selected and tailored to specific session formats or to meet curricula requirements. The CPPP Is not a stand-alone programme but was conceived to complement existing education curricula for physiotherapy and occupational therapy students as well as continuing education programmes for rehabilitation professionals. Each ofthe three core modules contains a series of structured presentations and related background material and each module contains a minimum of two presentations or talks (Figure I). The training manual is supplemented with PowerPoint presentations which can be customized for each talk. Each presentation includes practical exercises and keys to remember information provided. The modules have been developed with federal funding from a five-year multi-project centre grant issued by the US Department of Education, National Institute on Disability and Rehabilitation Research (NIDRR). The focus ofthe centre grant is on conducting research and training projects regarding the role of exercise and physical activity in the prevention of secondary conditions. Module 1:
Disability Awareness and Communication

Consumer Professional Partnership Programme

Module 1; Disability awareness & communication

Module 2: Prevention of secondary conditions

Module 3: Physical activity & healthy living

Talk 1.1: Introducing the social model of disability

Talk 2.1: Preventing secondary conditions

Talk 3.1 Exercise & spinal cord injury

Talk 1.2: Barriers for people with disabilities

Talk 2.2: Preventing osteoporosis

Talk 1.3: Communicating with people with disabilities

Talk 2.3: Preventing cardiovascular disease

Talk 2.4 Optional talk

The emphasis of module 1 is oti shitting the view of disability as being a medical or individual issue to a socially-constructed phenomenon. It introduces the social model of disability (Priestley, 2(X)3) and discusses its application to rehabilitation practice and the ways in which it may be better suited to reflect the lived experience of disability (Priestley, 2(X)3). Specifically, the module examines attitudinal, ecoInternational Journal of Therapy and Rehabilitation, July 2007, Vol 14, No 7

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nomic and physical barriers that people with SCI and other disabling conditions encounter in society. Module 1 also introduces ways in which rehabilitation therapists can best accommodate the accessibility and communication needs of people with SCI. The module raises awareness of barriers in clinical practice environments that may prevent or hinder access to therapy and services. In particular. patient-professional communication is emphasized as it is critical in ensuring that patient preferences are sufficiently addressed health recommendations; are understotxl and therapeutic goals are agreed. This mixlule was developed in response to comments by individuals with physical disabilities who felt that education of health professionals about disability-related issues can best be achieved through direct involvement of service users in the education process (Kroll et al, 2006). Module 2: Prevention of Secondary Conditions Mtxlule 2 reflects the NRH team efforts to increase awareness of preventable secondary complications. The module provides a concise overview of the causes of SCI and the most prevalent long-term secondary conditions tliat people with SCI experience, Rigorous scientific evidence is complemented by personal reports ofthe SCI Life Educator (SLE) on perceived challenges and chosen strategics to prevent complications and secondary conditions over various phases of in- and outpatient rehabilitation. The SLE presents personal, situational vignettes to illustrate difficulties in understanding or following treatment recommendations, and identifies ways in which these issues could be best addressed in partnership with therapists. Module 3: Physical Activity and Healthy Living Module 3 focuses on physical activity and exercise as a foundation for healthy living after SCI, and is therefore particularly relevant for educational programmes thai target physiotherapists. The module combines a review of the physiological basis of structured physical activity with the personal exercise experiences ofthe SLE. The SLE explains how exercise activities can be structured and delivered to become more acceptable to consumers with SCI. and how they can be best implemented in community settings. The importance of shared therapy goals are discussed and a clear process to facilitate goat attainment is outlined. Module presenters further stress the need for tailoring and customizing exercise formats and schedules to incorporate patient preferences, and discuss the benefits of family, social and peer support for exercise. Of critical importance

is the specificity of exercise and physical activity recommendations provided in this module. The collaborative development of the module by SCI researchers, consumers with SCI and an experienced SCI physiotherapist etVectively bridges the gap between research, clinical practice and community living. The module aims to provide health-care professionals with a better understanding of wellness as related to the lived experience of individuals with SCI. The module includes two specific topical areas: cardiovascular wellness through exercise and activity and specific information on shoulder use and associated pain. The goals with regard to cardiovascular wellness are: To increase understanding of the physiological response to exercise for individuals with SCI To enhance awareness of the benefits of exercise and the barriers to physical activity and structured exercise To provide strategies that will improve adherence to a structured exercise programme. The goals of this module with regard to shoulder use and associated pain are: To raise the understanding of the anatomy, kinesiology and neural innervation of the shoulder and its implications for patients with various levels and degrees of injury completeness To increa.se knowledge of classification issues for shoulder pain To broaden the understanding of common causes of shoulder pain To examine exercises and strategies that can prevent or decrease pain associated with shoulder function. SCI Life Educator and Training The SLE is a person with a SCI who: Has completed a Bachelors degree Has demonstrable knowledge of SCI and related self-management skills Is willing and able to express ideas and share personal experiences in an educational setting. Based on the above criteria, the SLE is carefully selected by the team for a paid part-time educator position. After recruitment, the SLE is provided with training by SCI rehabilitation team staff members and specific education material. The training involves individual instruction, question and answer sessions, and a structured training manual. It is important to note that the training is bi-directionaJ. Not only does the individual with SCI leam about SCI-related issues, presentation skills and the programme format, but SCI staff members without the personal experience of SCI also leam about the new team members life with the injury. The team also debates how these personal experiences can be incorporated into the programme presentation.
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CPPP SESSION DESIGN
Most CPPP sessions last approximately one-and-a-half hours but session length can be easily customized. The flexibility of this modular structure allows for combination of presentations within and across modules depending on the informational needs and educational objectives in a particular educational setting. Sessions are eo-taught by the SLE and a health professional. Depending on the nature of the talk and the audience, the health-care professional may be a physician, a rehabilitation professional such as a physiotherapist, or another health professional. Session format Sessions foiiow a set format, typically beginning with a definition ofthe learning goals at the outset and an overview ofthe session. Presenters use sets of presentation slides that have been developed for each talk within the three modules. Slide presentations can be customized to meet the requirements of particular audiences or curricula. Typically, the SLE takes turns with the health professionals in introducing the material. Both presenters discuss personal and clinical examples to illustrate the factual information. Participant involvement Much emphasis is placed on interaction with the audience. As part of presentations in module 1, presenters may ask the audience to define 'disability' or to reflect on how they interact with people with disabilities in their practice. The goal is to engage the audience in a dialogue, to identify what they find challenging, to leam about the strategies and solutions that they may have developed to communicate more effectively with people with SCI and to leam ofthe physical assistance they have offered. The SLE may also demonstrate actual mobility techniques such as safe transfers between chair and wheelchair or from ground level to wheelchair. Where appropriate, the SLE may discuss how she/ he may have 'modified' recommendations received by rehabilitation professionals to reach treatment goals more effectively in her/his home environment. A CPPP session frequently involves conversation exercises with the audience. Typical practice scenarios will be played out between the rehabilitation professionals and the SLE. Scenarios may include issues such as: Therapy adherence Goal setting Dealing with low health literacy Do's and don't's in communication Providing effective assistance. Each role-playing exercise is discussed and the SLE
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provides feedback to the audience. Throughout the session, participants have multiple 'question-and-answer' opportunities to ciariiy issues that may have particular relevance to their practice. Presentation handouts accompany each talk and participants are made aware of the training website (wv^^w. sci-health, org). where additional information resources can be found.

PROGRAMME FEEDBACK
In order to work towards continued improvement of the programme, CPPP staff collect stmctured evaluation fonns at the end of each programme, which contain both closed and open-ended questions regarding strengths and weaknesses of the lectures (Table I). First experiences with the CPPP are quite encouraging. Although at this stage the authors eannot report controlled evaluation results, feedback that the team has received from participants so far will be discussed. A total of 55 physiotherapists and 8 occupational/recreational therapists have participated in the CPPP interactive presentations. Completed evaluation questionnaires were obtained from all 63 rehabilitation professionals. Twenty-six participants (41.3%) stated 'required and interested' as reason for their participation, 20 (31.7%) participants stated 'interested' and 17 (27.0%) indicated that they were required to attend. The majority of participants felt that lecture organization, content and style were 'commendable'. The most successful elements of the CPPP appear to be the practical examples provided. This is followed by high satisfaction ratings tor 'interaction and discussion', with over 95% of participants rating this feature as 'commendable' or 'fine'. Valned aspects ofthe programme Feedback to date suggests that participants particularly value the insight they gained from the real-life examples presented by the SLE. Over 80% of participants felt that these examples were 'commendable'. Remarks given on the programme include: The consumer aspect of the presentation was extremely informative. As future physical therapists [physiotherapists], it is important for us to see the world through our patients' eyes.' 'Personal stories make a strong mark on the listener.' The SLE Is great at giving insight into how a SCI person views the world. Very beneficial.'

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'Having [clinical] information given and then supported with the SLE's real life examples made understanding much easier.' Areas for improvement Improvements need to be made in providing handouts and further reading material to support the presentations. Supporting materials have been provided inconsistently so far. Consequently, the quality and scope of these materials could not be rated by all participants; over 60% of respondents did not answer the question about 'reading material*. The authors hope to further integrate internet-based study materials in to the programme to complement the course presentations. These will be contained in a vi^eb-based resource library.

teaching programmes at remote locations. The training team at NRH is in the process of developing an internet-based CPPP, which will feature similar educational materials to those that are being used in tbe face-to-face education sessions. Further research A controlled evaluation ofthis programme is planned to determine the effectiveness of the CPPP programme in terms of enhancing disTABLE 1. Programme evaluation by participants Evaluation areas Lecture organization Needs improvement Fine Commendable Not answered Lecture content Needs improvement Fine Commendable Not answered Lecture style Needs improvement Fine Commendable Not answered Interaction and discussion Needs improvement Fine Commendable Not answered Examples provided Needs improvement Fine Commendable Not answered Visual aids used Needs improvement Fine Commendable Not answered Reading material Needs improvement Fine Commendable Not answered Handouts Needs improvement Fine Commendable Not answered Accessibility of material Needs improvement Fine Commendable Not answered Note: total nu i)f respondenls = 63%
(%)

24(38.1%) 39(61.9%)

DISCUSSION
The present report is based on preliminary feedback ttom a small sample of rehabilitation professionals therefore findings, especially in terms of educational effectiveness, cannot be stated. However the CPPP appears to have a high acceptability among physiotherapists and occupational therapists. The preliminary findings ean be viewed as supporting those found for a programme that targeted medical residents (interns) in which the involvement of eonsumer trainers improved the professionals' knowledge about life with a disability (Siebens et al, 2004; Gruppenetal. 1996). The CPPP's strength appears to be that health practitioners can enter into a dialogue with service users about a variety of topics related to their clinical practice. Practioners also learn to look beyond physical function to a broader living context and to develop alternative views of disability. In terms of programmatic weaknesses, it should be pointed out that it can be challenging to combine technical instruction and 'real world discussion' in brief sessions. At times, the time available for discussion was too short to provide sufficient examples. Adaption ofthe prof>ramme: implications The flexible structure of the programme allows for maximum customization to complement rather than replace existing curricula; making it easier to implement and sustain. The modular structure of the programme can be expanded as needed to include other topical modules or presentations. Furthermore, the CPPP approach does not have to be limited to SCI. The basic concept can be extended to other disability groups (such as stroke, cerebral palsy, multiple sclerosis) ;ind professions. Struetured training materials allow for new educators to readily incorporate these concepts into their

2 (3,2%) 24(38,1%) 37 (58,7%) 0 1 (1.6%) 23 (36,5%) 37 (58,7%) 2 (3.2%) 1 (t .6%) 17(27,0%) 43 (68.3%) 2 (3.2%) 3 (4.8%) 8(12,7%) 52 (82.5%) 0 0 37(58 24(38,1% 2 (3.2%) 0 16(25 7(11.1%) 40 (63.5%) 3 (4.8%) 30 (47,6%) 25 (39 7%) 5 (7.9%) 0 28 (44,4%) 32 (50,8%) 3 (4,8%) ^ o )

I \ i 1

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ability- and SCI-specific knowledge and skills compared to traditional instruction methods. Currently the most critical elements of this educational approach that would actually enhance learning and knowledge cannot be identified. One potentially promising way to evaluate this form of education programme may be the use of concept mapping, which has been used in medical education to explore knowledge frameworks with regard to the understanding of disability and health issues pre- and post instruction (West et al, 2002). This form of evaluation would allow potential changes in the cognitive conceptualization of disability and it's impact on active and independent living by therapists (and future therapists) to be determined. superior to that found in traditional education practices, and whether it is sustainable over time. IUl3
us Department of Educalion. NIDRR gmnr UH133B031J14 Conflict ofinteix'sl: none Bauman W, Spungen A (2000) Metabolic changes in persons after spinal cord injury, Phwf Med Rehahil Clin N Am 11: 109-^0 Capoor .1. Stein A (2005) Aging with spinal cord injury. Phys Med Rehahil Clin NAm 16: 129-61 DeVivo M, Krause J, Lammertse D (1999) Reeent trends in mortality and causes of death among persons wiih spin;il cord injury. Arch Phys Med Rehahil HG: 1411-9 DeVivo M, Stover S (1995) Long-term surviviil and causes of death. In: Stover S, DeLisa J. Whiteneck G, eds. Spinal cord injury: Clinieal outcomes from the model systems. Aspen. Gaithersburg. MD: 289-315 Groah S, Weitzenkamp D. Sett P. Soni B, Savic G (2001) The relationship between neurologieal level of injury and symptoniatie eardiovaseular disease risk in the aging spinal injured. Spinal Cord i9: 310-7 Gruppen L, Branch V. Laing T (1996) The use of trained patient eduealors with rheumatoid arthritis to teaeh medical students. Arthritis Care Res 9: 302 8 Karlsson A, Attvall S, Jansson P. Sullivan L. Lonnroth P (1995) Influence of ihe sympathetic nervous system on insulin sensitivity and adipose tissue metabolism: A study in spinal cord-injured subjects. Metaholi.sni 44: 52-8 Kaye S. LaPlante M. Carlson D, Wenger B (1996) Trends in disability rates in ihe United Slates. 1970-1994. Disability Statistics Abstracts 17, National instituie on Disability and Rehabiliiation Research. Washington DC, htlp://tinyurl, com/2z38ve (accessed 22 June 2007) Kroll T, Beatty P. Bingham S, (2003) Primary care satisfaetlon among adults with physical disabilities: the role of patient-providercommunieation, Mana^ Can- Q\\: 11-9 Kroll T. Jones G. Kehn M, Neri M (2006) Barriers and strategies affecting the utilization of primary preventive services for people with physical disabilities: A qualitative inquiry. Health Soc Care Community 14: 284-93 Levine A. Nash M. Green B.* Shea J, Aronica M (1992) An examination of dietary intakes and nutritional status of chronic healthy spinal cord injured individuals. Paraplegia 30: 880 9 Maki K. Briones E, Langbein W, Inman-Fellon A, Nemehausky B, Welch M, Burton J (1995) Associations between serum lipids and indicators of adiposity in men with splna! cord injury. Paraplegia 33: 102-9 McKinley W, Jaekson A. Cardenas D. DeVivo M (1999) Long-term medical complications after iraumatic spinal cord injury: A reiiional model systems analysis. An-h Phvs Meet Rehahil 80: 1402-10 National Center for Injury Prevention and Control (2001) Injury Fact Book 2001 2002. Centers for Disease Control and Prevention. Atlanta, GA, http://tinyurl.com/ywa7ow (accessed 22 June 2007) Neri M, Krolt T (2003) Understanding the consequences of access barriers to health care: Experiences of adults with disabilities, Disahil Rehahit 25: 85-96 Oliver S. Clarke-Jones L, Rees R, Milne R. Buchanan P, Gabbay J et al (2004) Involving consumers in research and development agenda setting for the NHS: developing an evidence-based approaeh. Health Teehnol Asse.ss 8: 493-7 Patrick D. SeHvens E, Charlton J (1983) Disability and patient satisfaction with medieal care, Med Care 21: 1062-75 Priestley M (2003) Disahitity: A life course approach. Polity. Cambridge, UK Rehabiliiation Research and Training Center on Disability Demographics and Statistics (2005) 2004 Diaahitity Status Reports, Cornell University, Ithaca, NY. Scheer J. Kroll T, Neri M, Beatty P (2002) Access barriers for persons with disabilities: The consumers" perspective. J Disahil Pol Stud 13: 221-30 Siebens H. Cairns K, Sehalick W III, Fondulis D. Corcoran P, Bartels E (2004) PoWER Programme: People with disabilities edueating residents. Am J Phvs Med Rehahil 83: 203-9 West, D, Park J. Richard Pomcroy K, Sandoval J (2002) Concept mapping assessment in medical educalion: a comparison of two scoring systems, Med Educ 36: 820-6 Whiteneck G, Charliftic SW; Frankel H ct al (1992) Mortality, morbidity, and psyehosocial outcomes of persons spinal cord injured more than 20 years ago, Paraplei^ia 30: 617-30

CONCLUSIONS
Consumer-directed education programmes for rehabilitation professionals hold significant promise. The involvement of service users in the delivery of such programmes adds a 'real' life focus to the clinical training activities. The CPPP, a highly flexible and adaptable programme, is an example of such an educational approach which can be adapted to a variety of clinical and academic settings. While acceptance of the CPPP's educational approach appears to be high, further support is needed. It is currently unclear how flexible the programme will prove in educational practice. Experiences from multiple sites will be needed to promote the CPPP as a model for enhanced education of rehabilitation professionals. Moreover, effectiveness evaluations are needed to determine whether the knowledge gain from the programme is

KEY POINTS
The Consumer Professional Partnership Programme (CPPP) is an innovative education programme which closely involves service users in the educational process; a Spinal Cord Injury Life Educator (SLE) co-teaches each module it was developed to enhance the disability knowledge and skill set of rehabilitation professionals who work with people with spinai cord injuries. The CPPP introduces the social model of disability as an alternative conceptualization of disability and familiarizes rehabilitation practitioners with the practical implications of this model. CPPP presentations can be combined with great flexibility and adapted to existing curricula in rehabilitation education. Preliminary evaluations suggest that participants particularly value the reallife experiences/examples that the SLE shares. Further evaluation of the programme is planned to determine the effectiveness

of of the CPPP programme in comparison to traditional instruction methods.

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