Spinal cord injury (SCI), a common form of physical disability, affects individuals around the world, impacting families and societies. A large number of people with SCI live in low- and middle-income countries; nevertheless, investigations on their treatment and rehabilitation in these socioeconomic contexts is limited. In Brazil, a study of 146 SCI patients demonstrated that neurological outcomes did not differ greatly from a similar set of patients in England.5
...low socio-economic status has been shown to have a negative impact on the process of reintegration.
While this is a promising finding with respect to the potential quality of SCI treatment in lower-income countries, rehabilitation does not end simply with a patient’s final neurological outcome.
Rather, the rehabilitative process seeks to both “optimize functioning and minimize the experience of disability” and “includes approaches to enable relevant persons in the immediate environment encompassing family, peers and employers, to remove barriers in the private environment and to create a facilitating larger physical and social environment. Rehabilitation strategy integrates these approaches including full inclusion and participation in all aspects of life.”6
Both acute care and rehabilitation are dependent upon access to specialized services that often require sufficient financial resources.
Given that low socio-economic status has been shown to have a negative impact on the process of reintegration,7 access to comprehensive rehabilitation is important not only for physical functioning, but also for the process of facilitating a patient’s successful return to his or her community.
Rehabilitation may, among other things, focus on vocation and employment – a key element for successful reintegration. Nevertheless, even in industrialized countries such as the United States, studies have found that among SCI patients employment rates are low and poverty rates high.8 Whether or not one has a job following an SCI is impacted by many factors beyond the injury itself: educational level, social status, age, mobility/accessibility, and insurance benefits all play a role.9
Cornerstones of rehabilitation
The cornerstones of a successful comprehensive rehabilitation and recovery for any SCI patient, regardless of the economic and socio-cultural situation in a country remain:
- The quality and speed of the emergency response;
- Appropriate healthcare services for the acute treatment of SCI;
- Comprehensive rehabilitation services for all levels and stages of SCI;
- Access to adapted and assistive devices; and
- Support services for community reintegration.
For each of these areas, the availability, accessibility and quality of services may vary.10 Deficits among any of these essential elements can lead to problems in achieving an optimal level of functioning.
Possible pitfalls include: transportation difficulties from an accident site; misdiagnosis; sub-standard treatment; a lack of wheelchairs, adequate padding or other needed devices; limited access to rehabilitation and reintegration services; and the physical and social environment.
With medical and rehabilitative attention focused on the acute care phase of SCI where mainly body structures and functions are treated and rehabilitated, aspects focusing on the long-term that relate to activities and participation and the impact of the environment, may be overlooked.
These too can affect patients after their discharge, presenting problems in achieving an optimal recovery.11 Community-based and/or transitional rehabilitation programs (see Box 1) that can help support reintegration are often absent in lower-income countries – although efforts have been undertaken to improve their coverage.
Box 1 | Community-based rehabilitation
Community-based rehabilitation (CBR) has its roots in pilot projects undertaken in developing countries in the 1980s and 90s.12 A recent collaborative review spearheaded by the WHO sought to establish revised guidelines and defined CBR as “a strategy within general community development for the rehabilitation, equalization of opportunities and social inclusion of all people with disabilities. CBR is implemented through the combined efforts of people with disability themselves, their families, organizations and communities, and the relevant government and non-governmental health, education, vocational, social and other services.”13
Its primary objectives, as defined by the WHO, include:
- Ensuring that those with disabilities can maximize their physical and mental abilities and have access to regular services and opportunities, as well as become active contributors to their community and society at large; and
- “To activate communities to promote and protect the human rights of people with disabilities through changes within the community, for example, by removing barriers to participation.”13
Community-based and/or transitional rehabilitation programs that can help support reintegration are often absent in lower-income countries...
Multilevel support for Community Based Rehabilitation
The WHO’s International Classification of Functioning, Disability and Health (ICF) model of disability incorporates not only body functions and structures, but activities and participation, effective and comprehensive rehabilitation.
The implementation of CBR therefore requires multi-sectoral collaboration that involves non-governmental organizations, governmental ministries and additional stakeholders, as well as resource mobilization and supportive national policies and management structures. Support is needed from the health, education, labor, and social sectors as well as the media.
At a community level, CBR requires a recognition of need, community involvement that includes participation of those with disabilities, community workers – often volunteers – who can regularly carry out activities that assist those with disabilities. Particular focus must be given to gender equality and inclusion of all age groups. Further information can be obtained from the WHO’s community-based rehabilitation website.
Rehabilitative shortcomings may fuel patients' uncertainties about their futures.
An SCI study in Thailand
Furthermore, rehabilitative shortcomings may fuel patients’ uncertainties about their futures. A study of 121 SCI patients in Thailand demonstrated better functional performance in hospitals compared to at home and found increased levels of stress, anxiety, and depression once patients were discharged.15 The study also found that the largest factor related to outcomes was the fulfillment of occupational therapy needs focused on the activities of daily living.
This case study aims to illustrate some of the challenges to comprehensive rehabilitation in SCI patients in one middle-income country; the study will explore the integration of available resources and the efforts made to compensate for those missing in order to achieve optimal functioning in a patient.