Spinal cord injury rehabilitation: Linking service delivery and community integration

Introduction

Community integration includes having access to appropriate housing, being able to mobilize in the community, being able to participate in work, leisure or educational activities of choice, and engaging in satisfying social relationships ( ; ). It is synonymous with the term participation in the International Classification of Functioning Disability and Health (ICF) ( ), which refers to involvement in life situations, and includes active engagement at the community level and social connectedness with other people ( ). Participating in meaningful roles and interests in the community, such as leisure and employment, can enable a person to reframe their views on acquired disability ( ), but poor community integration and lack of social participation is one of the biggest challenges for someone following SCI ( ). Services and models for SCI rehabilitation need to prioritize community integration in order to maximize outcomes and quality of life.

Prioritizing community integration

Following SCI a person will usually spend several months undergoing inpatient rehabilitation in a specialized spinal unit ( ). Following this, the injured person will be discharged to live in either their own home, or some other form of temporary or alternate accommodation. This period of transition from hospital to home is a very challenging time for people, as they are removed from the safety of the hospital environment with the associated supports, both physical and social, and plunged into environments that may be inaccessible and even hostile toward people with disabilities ( ). This process is made more challenging for people in developing countries, where community infrastructure such as roads, and transport is even less accessible for people with disabilities ( ). The funding environment, policies and infrastructure in the jurisdiction in which the injured person lives, impacts the availability of the resources they have access to, and may facilitate or hinder this transition process. People with SCI have described feeling unprepared for the difficulties and barriers they are going to face in the real world ( ). Therefore, in the context of shrinking health budgets, maximizing the efficacy of inpatient rehabilitation to prepare people to reintegrate into their community must be one of the primary goals of rehabilitation ( ).

Interplay between health condition, person factors, and environmental factors

As depicted in the ICF ( Fig. 1 ), activity and participation are influenced by the health condition and body functions and structures (in this case the injury and associated levels of neurological impairment and secondary health conditions), in addition to person factors such as age, gender, other health conditions, weight, coping style, education and other life experiences, and environmental factors. Environmental factors are frequently not modifiable (e.g., culture, climate, physical environment such as hills). Some environmental factors occur at a societal level and require policy or government involvement (e.g., availability of rehabilitation services, funding for equipment, public transport, discriminatory attitudes, and access to housing) ( ), while others occur at a family or local community level (for example, social supports, and private transport), and are potentially modifiable ( ). Environmental barriers are often more challenging in developing countries ( ). Personal and environmental factors have a significant role in facilitating or hindering the participation or community integration of people following SCI.

Models and approaches to community integration

Most commonly, service models or programs that aim to support the community integration of people with SCI in the immediate period following inpatient rehabilitation are conducted by specialist SCI units ( ). Such programs typically include a core multidisciplinary team consisting of physiotherapists, occupational therapists, community nurses and social workers ( ). Additional staff may include vocational consultants, psychologists, peer mentors, leisure specialists and exercise physiologists. Community integration programs usually address a large range of issues, including community-based wheelchair skills, physical health education, strategies to increase self-efficacy and self-management skills, goal setting, training or managing carers, and working on improving independence in self-care ( ).

There are a range of community integration and/or transitional living models or approaches being used by specialist SCI units internationally, and most can be categorized into one of four models ( ). Each of these models is outlined in the next section. It is also important to consider goal setting as an integral outcome tool within these models. In a systematic review of the qualitative literature exploring their experience of, and their perspectives on, goal setting in rehabilitation, people with SCI recognized the importance of being self-directed ( ). Furthermore, they aspired to take an active role, and had a preference for goal setting oriented around their daily life. This was at times at odds with the health professional, who tended to use the hospital as their point of reference ( ). A shared process with goal setting relevant to persons with SCI and their everyday life is needed ( ) and formally or informally integrated in community integration models ( Fig. 2 ).

Community integration embedded within inpatient rehabilitation

The first approach to community integration involves preparing people for discharge as part of the inpatient rehabilitation service, that is, there is no separate or specific service for community integration ( Fig. 3 ). This model tends to be in place in countries where length of hospital rehabilitation is longer, and there is less pressure to discharge people quickly. Some services are able to offer patients the opportunity to return home for a short period of time (for example, 1 month) prior to discharge, and then return to the facility work to on goals that were identified while at home. Other SCI units offer ongoing outpatient therapy on a regular basis for up to 3–4 months, provided the patient lives within driving distance of the SCI unit. Following this, patients are referred onto community-based providers. This approach has advantages and disadvantages. While it allows the injured person and their family time to adjust and prepare for the potential challenges that may be faced when the patient returns home, particularly in relation to organizing assistive technology and an accessible home environment, it is also likely that long periods of hospitalization impact negatively on the patient’s self-determination and self-efficacy. The longer the hospital stay, the more likely there are to be entrenched patterns of institutionalization, and the development of greater anxiety when the time comes to return to living in the community ( ; ). For example, in hospital, routines are imposed and there are few opportunities to assume responsibility and take an active role in rehabilitation decisions ( ). Therefore, the possible benefits of a longer hospital stay need to be weighed against the likely negative impacts.

Transitional rehabilitation program

A transitional rehabilitation (TR) program typically consists of a short “stay” of between 4 and 8 weeks ( Fig. 4 ). In some instances, the patient lives in a self-contained unit during this period, either on or close to the SCI unit or hospital site. In this model, specific goals for community integration are identified collaboratively between the injured person and the rehabilitation team, using a goal-setting tool. Examples of such tools include Goal Attainment Scaling (GAS) ( ), the Needs Assessment Checklist ( ), and the Multi-disciplinary Goal Attainment Measure (MGAM) ( ). Goals may include, for example, to return to study, to learn to use public transport, or to drive ( ). The identified goals are addressed during the 4–8 weeks of the program, are reviewed regularly, and again at the completion of the program. Following completion of the TR program, the patient may either be referred to an SCI outreach service for a short period of time, or referred to community-based services to continue to work on identified goals or set new goals. This approach has the benefit of enabling the patient to address the community integration goals they wish to address, without the negative impacts of institutionalization described above.

Assistive technology, transport, housing

Access to suitably accessible housing, appropriate assistive technology and transport are key in facilitating community integration after SCI ( ).