According to the united nations (un), the world population reached 7 billion in 2011, with the vast majority (5.8 billion) living in less-developed regions.1 In that same year, the World Health Organization (WHO), in partnership with the World Bank, published the first-ever World Report on Disability (WRD), identifying that about 15% of the world’s population lives with some form of a disability. This fact suggests that the prevalence of disability is rising; possible causes include an aging population, chronic disease spread, and improved methodologies to measure disability.2 This translates to over 1 billion people living with a disability, 80% of whom live in the developing world.3 Lower-income countries have been found to have a higher prevalence of disability than high-income countries.3 It is well recognized that persons with disabilities experience poverty more intensely, have poorer health outcomes, and face barriers to access education, employment, and health services. In many low-income countries, where even basic health care needs are often unmet, rehabilitation is not a consideration of national governments and rarely is prioritized. Even within the health care systems and professional schools, rehabilitation is poorly understood, underresourced, and lacking in training curricula.4 However, with the grass-roots movement of the disability community that led to the UN Convention of the Rights of Persons with Disability in 2006 (Fig. 101–1),5 there has been an attitudinal shift globally in the recognition of the value of persons with disabilities, as well as the importance of sustainable rehabilitation training, services, and care in all sectors. This chapter will introduce the role of rehabilitation in developing countries, describe the unique needs, challenges, and successes connected with it, and provide an overview of initiatives and resources addressing advocacy, assistive devices, education, research, and humanitarian efforts.
STATE OF HEALTH CARE FOR PERSONS WITH DISABILITY IN THE DEVELOPING WORLD
While globally, there has been encouraging progress in health, with people living longer and fewer living in extreme poverty, vulnerable groups continue to fall further behind. In most societies, people with disabilities are among the most marginalized, facing discrimination, stigma, and inaccessible environments.6 In response to the WRD, and in consideration of the UN Convention on the Rights of Persons with Disabilities (Fig. 101–1), the WHO prepared a global action plan for disability for 2014 to 2021 (Fig. 101–2). In this document, the WHO states that “disability is a development priority,” with higher disability prevalence in lower-income countries and the perpetual cycle of disability and poverty reinforcing each other. Affordability is the primary reason for lack of access to health care among persons with disabilities in low-income countries.2 Poverty heightens the risk of impairments through poor health care, nutrition, and dangerous living and working environments. For example, falls from heights such as rooftops (where families sleep to keep cool in hot climates) and trees (during the harvesting of food) are the leading cause of spinal cord injury (SCI) in developing countries.7
With an aging population and an increase in chronic diseases associated with lifestyle, including diabetes and cardiovascular conditions, the need for rehabilitation services is anticipated to escalate with increasing incidence of disabling conditions such as stroke. Two-thirds of strokes in the world occur in developing countries, with a more-than-threefold greater increase in burden due to stroke, and 4.85 million stroke deaths and 91.4 million disability-adjusted life years (DALYs) in developing countries, compared with 1.6 million deaths and 21.5 million DALYs in high-income countries.8 These countries are least equipped to provide effective rehabilitation services, with the burden of stroke care falling to families who can little afford that care due to the loss of income earnings of the disabled family member, thus further exacerbating the cycle of poverty and disability.
Persons with disabilities have shorter life expectancies than the nondisabled, a discrepancy that is more pronounced in low-income countries.2 Mortalities from SCI are significantly worse in developing countries; for example, the 10-year mortality in sub-Sahara West Africa is 83%, compared to 14% in North America.9 Preventable secondary conditions, such as urinary tract infections and pressure sores, remain the major cause of morbidity and mortality for persons living with an SCI in low-income countries.10 In addition to the direct effect of a disability on health, a person with a disability may experience poorer standards of living and poverty as a result of reduced access to education and employment and increased costs related to disability.3 Recognizing the realities lived by persons with disabilities, the WHO Action Plan has prioritized three objectives (Fig. 101–2), of which rehabilitation plays a central and critical role, including improving access to services, strengthening services, and improving data collection and research activities.
REHABILITATION ISSUES AND EFFORTS IN THE DEVELOPING WORLD
Rehabilitation services are often nonexistent or suboptimal to meet the demands, reaching only an estimated 1% to 2% of persons with disabilities in low-income countries. For many regions of the world, there are few rehabilitation health professionals. Furthermore, access is hampered by a lack of knowledge about referral process or indications, physical environment, costs, affordable and accessible transportation, the stigma of disability, gender inequities, availability of durable equipment (including assistive devices and wheelchairs), and quality of services.
Women and girls with disabilities are likely to experience additional discrimination, including abuse and marginalization. Indigenous persons, the internally displaced, and refugees with disabilities also face particular challenges in accessing services.3
A review of neurorehabilitation needs in Mauritius, one of the highest per-capita-income countries in Africa with a reported public health expenditures of 4.8% of gross domestic product (GDP),i found that despite advanced services in acute care, there was a significant lack of services and facilities for persons with medical and social consequences of neurologic disability.11 As of 2009, only 4 of the country’s 1,500 doctors were identified as rehabilitation specialists, and 17 physiotherapists were publically employed, responsible for an average of 200 patients each. In Ghana, a review of services concluded that the country had “virtually no medical rehabilitation” and noted a lack of laws to protect the disabled, lack of funding, and cultural stigma among barriers.12 In a small, single-hospital study of discharged stroke survivors and their caregivers in one community in India, lack of information about stroke and affordability were cited as major barriers to accessibility of poststroke rehabilitation services.13
Despite poorer survival rates from SCI in developing countries compared to developed ones, improvements in survival following SCI have been reported in countries with structured rehabilitation services. A program in South India offered annual visits for discharged persons with SCI through home visits or an annual follow-up program. The interdisciplinary team addressed medical complications, functional status, and community reintegration. In the program, 5- and 25-year survival rates of 86% and 58%, respectively, were found, which are promising.14
A small feasibility study on a self-rehabilitation program in Benin demonstrated that patients were capable of following a self-exercise upper-limb program poststroke, a potentially viable option in a country with limited formal services or health providers.15 On a larger scale, the Swedish government, along with Spinalis, a rehabilitation program, partnered with governments in Botswana and Namibia to develop each country’s first SCI rehabilitation centers, which included transitioning periods of mentoring and training by international rehabilitation experts. The Swiss Paraplegia Research has supported numerous initiatives in rehabilitation capacity-building in low-resourced countries, including international exchanges for education and training.
Strategies and actions to reduce barriers and improve access to rehabilitation services for those suffering from disability must span multiple sectors, including governments, health systems, and academia. Accessible transportation and universal design in buildings, medical equipment, and facilities are essential. In addition, education within the health sector on disability issues is necessary to make available services more inclusive, and health information should be provided in accessible format.
Advocacy for the implementation of health policies that align with the UN Convention on the Rights of Persons with Disabilities is important, along with education and empowerment of persons with disabilities on their rights. The empowerment of disabled persons is critical, as attitudinal change related to disability will require the participation of persons living with disabilities. Therefore, efforts to develop self-advocacy skills that include them as educators are critical. International/national partners can help build leadership capacity within disability organizations and promote their participation in health services governance.3
The WHO recommends that health expenditures should meet 5% of a country’s GDP
There are very few (if any) physical medicine and rehabilitation (PMR) specialists in most African countries.4 Formal training programs in PMR in sub-Saharan Africa and much of the rest of the developing world are nonexistent. Pediatric-specific training and expertise are even more scarce.16,17 In Haiti, a country approaching 10 million in population, the first physical therapy school opened in 2014 through a local and international university partnership. Pakistan, the world’s sixth-most populated country, has nearly doubled its number of rehabilitation specialists, from 38 in 2011 to almost 60 rehabilitation specialists in 2017, with 8 more in training. Despite this progress, only an estimated 100 of the country’s 1,000 physiotherapists work in rehabilitation.18 The majority of PMR-trained specialists in Pakistan were educated through the military hospital and university system, programs that assumed heightened leadership roles after the 2005 earthquake.
There is likely no “one size fits all” solution to introducing and sustaining rehabilitation training programs in PMR and health disciplines. Various strategies for building capacity in the rehabilitation professions have been introduced, often led by local or international aid organizations. For decades, the International Red Cross Red Crescent (ICRC) society has implemented prosthetic and orthotic technical training programs in high-risk or postconflict countries, such as those affected by land mines. A number of international aid organizations have developed nonuniversity-based training programs for rehabilitation workers in order to meet urgent needs in severely underserviced settings.19 The concept of a PMR Fellowship for nonspecialists may represent a solution for countries without local expertise; the International Rehabilitation Forum has entered into a formal arrangement with the Ghana College of Family Medicine to deliver a 2-year PMR fellowship for certified Family Medicine physicians. The content will be delivered primarily online, complemented with on-site sessions conducted by international volunteer faculty.20
Nepal, a country of 28.5 million [ranking 144 of 188 countries in the 2016 Human Development Index (HDI)ii] that is affected by natural disasters and challenging physical environment, had no PMR specialists until 2017. Through support from small, nonprofit organizations, a local physician completed a PMR residency program in Bangladesh and became Nepal’s first PMR specialist. There is a focused effort to build rehabilitation leadership capacity in Nepal, including aims to develop training opportunities in Nepal (see “Case Study—Nepal,” later in this chapter).
Educational and training resources are globally accessible through electronic and online platforms. The International Spinal Cord Society (Table 101–1) has developed a free online discipline-specific program for basic SCI management. The World Federation of Occupational Therapists, the World Congress of Physical Therapy, and the International Society of Prosthetists and Orthotists (ISPO) have all endorsed curricula standards and training guidelines in their respective fields (Table 101–1). International exchanges, online education, mentoring opportunities, and leadership development are important for the continued development of educational programs.
|World Health Organization||Community-based rehabilitation guidelines||who.int/disabilities/publications|
|Guidance note on disability and emergency risk management for health|
|Emergency medical teams: minimum technical standards and recommendations for rehabilitation|
|Guideline on the provision of manual wheelchairs in less resourced countries|
|World Report on Disability|
|WHO global disability action plan 2014–2021||who.int/disabilities/action plan|
|International Society of Physical and Rehabilitation Medicine||Links to global partners and resources and online education modules||isprm.org|
|International Spinal Cord Society||Educational resources, including online curricula for SCI training and a global mapping project for epidemiology||iscos.org.uk|
|International Perspectives on Spinal Cord Injury||elearnSCI.org|
|World Federation of Occupational Therapy||Educational resources, policy on curricula, and standards||wfot.org|
|Responding internationally to disasters: a “do’s and don’ts” guide for rehabilitation workers21|
|World Confederation for Physical Therapy||Links to educational resources, policy, and standards||wcpt.org|
|International Society of Prosthetics and Orthotics||Management of limb injuries during disasters and conflicts||ispoint.org|
|Guidelines for training personnel in developing countries for prosthetics and orthotics services|
The HDI is a measure created to assess the status of a country’s development. It characterizes achievement on a number of metrics, including a long and healthy life, being knowledgeable, and having a decent standard of living.6