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.

Community integration embedded in inpatient rehabilitation. Illustrates one model where community integration is embedded within inpatient rehabilitation.

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.

Transitional Rehabilitation model. ¹ MDT = multi-disciplinary team. Depicts the transitional rehabilitation model.

Extended community integration service

A third approach provides patient support for a longer period that TR, and can be for up to 12 months. This enables longer term goals to be addressed, allowing the injured person to make use of the expertise of the specialist SCI for longer, and providing more time to address and resolve issues that come up once they have returned home. While this may be helpful for patients that have had a shorter length of inpatient rehabilitation, it is also possible that this approach fosters a greater dependency on the SCI unit ( ). It is important when undertaking this approach that patients are actively engaged in decision-making, thereby minimizing dependency and enhancing the patient’s confidence and independence skills in preparation for returning home ( ).

Telehealth follow-up

The final approach involves following up people using telehealth (by either telephone or video conferencing), for a fixed period of time (e.g., up to 60 days). While this approach is becoming more common, it could be more widely utilized to facilitate community integration of people with SCI, particularly for health maintenance or management of secondary health conditions, and to build capacity of community-based therapists ( ). While there has been some work done assessing the effectiveness of using telehealth specifically for health self-management following SCI ( ; ), less information is available regarding using tele-based services for capacity building of community providers such as therapists, general practitioners and community nurses. Utilizing telephone follow-up is particularly useful in countries where people live in rural locations or there is poor infrastructure ( ).

Assistive technology

In order to facilitate the process of returning home, there is a variety of assistive technologies required for someone to ensure safety and maximize independence ( ). Such technologies range from wheelchairs, pressure cushions, and bathing aids ( ), through to environmental control systems and Smart Home technology ( ). A detailed discussion of this area is beyond the scope of this chapter; however, it is an important element that needs to be addressed as part of the plan for transitioning the injured person to the community, taking into account funding available and policies within the person’s jurisdiction.

Transport

Having access to transport is a key requirement to enable people with SCI to shop, to use the bank, to get to work and education, and to engage in social and leisure activities in the community ( ). , specifically refers to the importance of the rights of people with disabilities to be able to access transportation on an equal basis with others (United Nations). Yet, transportation issues are consistently identified by people with disabilities as a major challenge and barrier to community participation. This is even more problematic in low and middle income countries ( ).

Common issues raised by people with disabilities, such as SCI, regarding using public transport include concerns about accessibility, safety, reliability, affordability, limited services especially in rural areas, and the attitude of the public ( ). Community integration programs may address these concerns prior to discharge from hospital, by accompanying their patients into the local community where possible to practice using public transport and problem-solve issues that arise ( ).

It is common for people in high income countries to prefer the use of private vehicles, with high rates of return to self-driving being associated with high community integration and better life satisfaction ( ). However, for someone with an SCI to be able to self-drive a car, or travel as a passenger in a wheelchair, expensive modifications such as hand controls, ramps and modified vehicles are usually needed. Availability of such modifications will depend on the funding and policy environment of the country in which the person lives, but are also influenced by socioeconomic factors as education, income, and employment status ( ). Rehabilitation programs need to have a strong focus on working toward driving as a goal, which may require follow-up once the injured person has returned home and for some time after.

Housing

Challenges for people with SCI relate to both housing availability and housing suitability ( ). An important part of the process of preparing someone with an SCI to transition to live back in the community is ensuring they have somewhere suitable to live. Quality of life and successful community integration after SCI have been associated with discharge residence ( ).

After inpatient rehabilitation, there are a number of possible discharge scenarios for someone with SCI. They may be discharged back to their own or to a previous family home, which will likely require modifications, they may move into physically accessible social housing, or they may need to move into some form of supported accommodation or residential care facility ( ) ( Fig. 5 ). In addition, access to appropriate formal and informal supports are integral to an individual’s experience of optimal social participation ( ; ).

Discharge destinations. Highlights possible destinations for discharge following inpatient rehabilitation.

Participating in leisure assists adjustment following SCI

Following SCI, people experience a disruption to their leisure identity and a changed leisure repertoire ( ). How people use their time also changes. A large reduction in time spent in paid employment, potentially makes more time available for avocational pursuits ( ). With demonstrated links between engagement in leisure and subjective wellbeing ( ; ), exploring leisure identity as part of rehabilitation/community integration can assist people to achieve meaningful adaptation to changed circumstances. Engagement in leisure has a direct influence on the adjustment of individuals following SCI, therefore developing skills in managing leisure becomes critical in the process of community reintegration ( ). In addition, for those unable to reintegrate into paid work, participation in non-vocational activities should also be considered a goal of rehabilitation ( ).

Health benefits of physical leisure participation

Physical leisure activities have an important role in addressing some of the negative health effects associated with lack of physical activity following SCI, including loss of muscle mass, obesity, cardiovascular disease, type-2 diabetes, depression, pain and fatigue ( ). Sports participation has also been associated positively with community integration and quality of life ( ).

Peer mentors assist in transition from hospital to home

Peer mentors can play an important role in supporting people during the transition from hospital to home, and often fill a service gap between formal hospital-based services and community-based services ( ). Peers can promote physical activity ( ), assist with wheelchair skills training ( ), and provide effective support in managing ongoing health conditions ( ). Specialist SCI units utilizing emerging best practice approaches to rehabilitation and community integration, include people with lived experience as an employed member of the rehabilitation team ( ).

Active rehabilitation

Once people with SCI are discharged from inpatient rehabilitation, peer mentors can continue to have a positive influence on development of self-efficacy, through role modelling success and demonstrating how to overcome failures ( ). Active Rehabilitation (AR) is a community peer-based approach that typically involves people with SCI attending camps that offer intensive goal-oriented group-based training and peer support activities in a community setting ( ). Typical activities addressed during AR are wheelchair skills training, activities of daily living, sports and recreational activities, education and setting goals. These are delivered through a combination of SCI peer mentors, and non-disabled assistants. AR offers a unique learning environment through a mixture of resources, activities and a “can-do” attitude, where the peer mentors are viewed as credible role models who have “lived it all” ( ).

Benefits of employment

Seeking, gaining and maintaining employment after SCI is valued by individuals and the process contributes to people’s sense and strength of identity ( ; ). Employment has been described as a source of mental stimulation and an opportunity for personal growth and independence ( ), and also as part of one’s identity and representative of “living a normal life” ( ). The health and social benefits of employment, including having a place within the community and economic self-sufficiency, are being increasingly recognized ( ; ).

Vocational rehabilitation

Vocational rehabilitation (VR) to restore or maintain an individual’s vocational participation after major injury may be more effective if actioned sooner ( ; ; ), and should be a major focus of community integration ( ). Current evidence supports the practice of intervention as early as when the patient is in the inpatient rehabilitation phase ( ; ), and can address modifiable factors associated with barriers to employment ( ). In addition to vocational rehabilitation, these modifiable factors include education, functional independence, social support and financial disincentives ( ). The community integration models described earlier in this chapter may also provide appropriate settings for delivery of this early intervention vocational rehabilitation ( ; ).

Pre and post injury education consistently appears to facilitate post injury employment, ( ; ). Similarly, further education for skill development strengthens opportunities for post injury employment ( ). Vocational rehabilitation within the community integration setting can assist to explore further education and training, facilitating employment trajectories ( ).

Importance of education in maintaining physical and mental health

An important part of being successfully integrated back into the community after SCI is maintaining physical and mental health, and preventing the occurrence of secondary health conditions that may require hospital readmission. People with SCI are at higher risk of hospital readmission ( ), or significant disruption to their social and employment participation due to health problems such as skin injuries, urinary tract infections, chronic pain, spasm and spasticity, and circulatory problems ( ). Rehabilitation has the role of educating people with SCI and their families as to how to stay physically and mentally healthy after discharge. However, people with SCI report that they often leave hospital feeling unprepared to assume responsibility for their health needs ( ). A variety of approaches used by specialist spinal units to educate patients and their families are utilized. Approaches include using hard copy educational handouts, conducting education sessions in hospital, and developing “How To” videos for people to watch at a convenient time ( ). After discharge home, ongoing support of patients and their families in relation to maintaining health is vital. Telephone counselling has the potential to reduce medical complications and health care utilization, and improve psychosocial outcomes in the early stages following discharge ( ).

Whatever education is provided should be presented in a form that is suitable for people with low levels of health literacy. It is also recognized that people with SCI often have issues with fatigue and mild cognitive impairment, and therefore may need information repeated frequently and at different time points to maximize impact ( ). Improvements in knowledge do not necessarily translate into improvements in problem-solving. Therefore, incorporating more active learning strategies, such as role plays within patient education programs may facilitate better transfer of knowledge within life situations ( ).

Role of peer educators in facilitating self-management

Facilitating self-management of people with SCI, can help them to take a more active role in managing their health care, and potentially minimize or prevent the development of secondary health conditions listed above. Chronic disease self-management programs focus on increasing perceived self-efficacy to solve problems and make decisions to manage day-to-day health ( ). People with SCI report that barriers to self-management include funding and funding policies, and lack of physical access to medical clinics and buildings, while facilitators include peer support ( ). With appropriate training peers can play an active role in education as they are well placed to form empathic relationships, self-reflect and build understanding through practical life examples ( ). One example of integration of lived experience in a peer educator role, which demonstrates benefits in self-management, is the peer-led, telephone based, health self-management intervention called ‘My Care My Call’ for adults with chronic SCI ( ). Such interventions, however, need to be integrated with, rather than separate to, any other SCI-specific services the patient is receiving. In addition, it is important that specific goals are set with the patient and their family in order for interventions to be targeted and effective ( ).