Introduction
Traumatic spinal cord injury (TSCI) has profound effects on survivors' health condition
and function.[[1]] Patients with TSCI face many difficulties while returning to their previous social
roles. They would experience daily struggles with physical, psychological, and financial
problems.[[2]],[[3]] Given the high rate of traffic accidents leading to a high number of spinal cord-injured
patients in Iran and many other countries, it is necessary to pay special attention
to the management of these patients.[[4]]
Great efforts have been made to develop functional performance along with quality
of life of patients with TSCI. The primary goal is to initiate rehabilitation programs
as soon as possible after the patient's spinal cord problems have been stabilized.
In this regard, there have been rehabilitation centers around the world in which both
new technologies and expert staff are gathered to provide the highest level of patient
care.[[5]] The ultimate goal is to help patients return to their previous function.
The cost of these rehabilitation centers is a burden to both patients and the health-care
system. Patients with TSCI are not expected to be fully capable of providing an economically
independent life at least for 1st years after trauma. Thus, these rehabilitation programs
will be questioned as if they are affordable to run. Furthermore, the circumstances
provided in these rehabilitation centers are not the same as what patients deal with,
within their routine lives in home and the society. Hence, patients are not appropriately
trained for real daily life.[[6]] The time spent in these centers is not usually enough for both patients and their
family to learn their new life situations. Therefore, they would challenge numerous
problems which they are not trained for.[[7]] Furthermore, many of these rehabilitation programs are limited in terms of education
and support to patients with TSCI and does not cover their families. Hence, a patient
not only has problems doing ordinary routines but also his/her family has no idea
how to help them or even how to adapt their own personal life to new circumstances.[[8]]
The high cost of patient care in specialized centers along with their failure to prepare
patients with TSCI for successful return to ordinary life has resulted in enormous
studies trying to facilitate the transition period between being completely disabled
and to live in an ordinary life. One of these solutions is programs based on home
care. The natures of these programs have changed over the time. Novel programs have
been developed in different countries which sometimes have led to outstanding results.[[9]],[[10]],[[11]],[[12]] Recently, great efforts have been focused on lowering heavy costs of care in specialized
centers and on developing efficacy of these services using the patient's own life
circumstances. Patient's return to his/her routine life without complications leading
to hospital admission is the main objective of these services.
To the best of our knowledge, there is no study reevaluating these rehabilitation
and care programs. However, it is mandatory to understand various aspects of these
methods to achieve optimal efficacy of them and to integrate them to obtain a maximum
possible synergistic result. The aim of the present study is to describe a general
overview of different home care programs and their components in patients with TSCI.
Results
Of the 113 exclusive titles matched to our search strategy, 110 full-text articles
were available to screen for eligibility. Of these, 10 studies fulfilled the inclusion
criteria and were included in the study. In addition, relevant titles were identified
from the reference list of articles and screened for potential inclusion. Of these,
210 full-text articles were evaluated and only 5 matched the inclusion criteria. A
total number of 15 articles were reviewed in this study [[Figure 1]] and [[Table 1]].
Figure 1: Flowchart of article selection process
Table 1: Summary of articles reviewed
Table 1: Contd...
Home care component
Home-based rehabilitation can be categorized into five different but naturally relevant
synthesizable fields:
Home aids/modification
Physical barriers in home are among the most important environmental barriers for
patients with spinal cord injury to return to normal life.[[13]] Administration of specially designed equipment for a specific patient and applying
possible changes in home or working place architecture would help to elevate patient's
sense of secure and independence. These equipment consist of mechanical/electronic
devices and also those used in conservative and supportive treatments. Few studies
have emphasized the importance of using home aids for patients with TSCI.[[5]],[[6]] Using home aids beside application of remote control technologies may result in
considerable positive changes, especially in patients with high motivation to overcome
their disability boundaries and lower their dependency. Therefore, it would result
in higher satisfaction and quality of life.[[14]]
Different categories of home aids have been assessed for efficacy in previous studies.
Biering-Sørensen et al. found that the most common devices used are commode/shower
chair on wheels or a seat, electrical bed, grab bar by the toilet, special mattress,
lift/hoist, computers, and kitchen tools or cutlery with special handles. These tools
were most likely to be used by patients with cervical spinal cord injury.[[15]] Rigby et al. showed that phone, TV, stereo, fan, and lights are the most common
electrical devices in TSCI patients' daily life. Patients declared that utilization
of these devices developed their independency, sense of value, and self-confidence.[[9]] Remote control devices used to adjust temperature, opening and closing doors and
windows, turning lights, TV, and etc., on and off may also be useful to elevate patients'
independence and contribution to perform home chores.[[16]]
Health-care equipment also has a great value in maintaining patients' health and preventing
secondary complications. According to Stiens et al., examples of such equipment are
as follows: “bowel and bladder supplies including catheters, leg and bed bags, laxatives,
suppositories, gloves, incontinence briefs, underpads, lubricants, and digital stimulators;
pulmonary ventilation equipment including continuous positive airway pressure and
bi-level positive airway pressure machines, humidifiers, ventilators, and suction
and inhalation-exhalation machines; Skin care supplies including pillows, foam blocks,
positioning wedges, dressings, emollients, and decompression.”[[16]]
An occupational therapist is usually responsible for choosing the best home aids based
on patient's needs. Before discharging from hospital, the occupational therapist would
visit the patient's house. According to the level of the spinal cord injury and previous
abilities of the patient, functional aids needed are predicted and designed. These
aids can change as patient's abilities and functional goals develop.[[10]],[[16]]
Constructional changes may be necessary to provide a safe and secure living place
matching patients' new needs. These changes are generally expensive and difficult
to apply but occupational therapist's efforts with collaboration and consultation
of other experts can be effective in this filed. As Stiens et al. have mentioned,
this section of home care program can include “ramps, automatic doors, overhead installed
track lift systems, reserve power generators, and emergency response systems.”[[16]] If the same changes can be made in the workplace, there might be a great step toward
resolving occupational problems.
Home nursing and family help
Patients with spinal cord injury will spend most of their time with their families.
Thus, family members have an important role in providing an effective care.[[17]] Involving patient's family in the rehabilitation program after educating them may
have potentially beneficial effects.[[18]]
On the other hand, providing care for an abundantly dependent patient may put lots
of pressure on family members and occasionally harm familial relationships. This issue
becomes clear as if we consider mean age of patients struggling with these injuries;
an individual with zero dependence in his/her previous daily life is now completely
disabled seeking help of others. Therefore, it is important to pay special attention
to family issues when designing a comprehensive plan for home care and to prevent
putting too much pressure on family members. Especially, in the first days of returning
to their home, both patients and their families face a lot of pressure; thus, an outside
support is necessary.[[19]]
Home nursing may provide a great help for patients with TSCI, performing activities
of daily living such as bathing, dressing, transfers, and bowel/bladder management.
Although this nursing care prevents excessive pressure to family members, the costs
can be considerable.[[20]],[[21]] Nursing care has its major effect on performance limitations rather than medical
issues; thus, functional disability is the best predictor of the extent of nursing
care needed.[[22]]
Social support
TSCI is a severe catastrophic life event, causing significant psychological trauma
as well.[[23]] Social support can be effective in means of lowering the burden of psychological
trauma, depression, disappointment, and elevating life satisfaction.[[24]],[[25]],[[26]] Unfortunately, social support programs are not easily available in developing countries
and patients with TSCI buckle with lots of psychological problems.[[27]]
It has been proposed that participation in social activities is associated with a
higher quality of life more than any other factors.[[28]] The WHO defines participation as “a person's involvement in a life situation.”[[29]] According to a review by Barclay et al., factors such as “having adequate personal
care assistance, having appropriate social support, having adequate special equipment,
and appropriate occupational therapy” can be effective in facilitating participation
of a TSCI patient and consequently in increasing quality of life.[[28]]
TSCI Rehab project categorizes social support into following domains: “financial planning,
discharge planning, discharge services, supportive counseling, educating about and
managing referral to peer/advocacy groups, education about TSCI and other relevant
topics, educating about and managing referral to community/in-house services, and
team conferences. Every domain has its own branching.”[[30]] One of the important aspects of social support is to facilitate occupational opportunities
for patients with TSCI. Although it has been shown that employment has some advantages
on the quality of life of a TSCI patient,[[31]] only up to 35% of these patients are employed.[[32]] Occupational therapist can have a great role in facilitating work circumstances
for a TSCI patient and introducing occupational opportunities matching their remained
abilities.[[33]]
Nongovernmental organizations are of important role in the rehabilitation process.
Providing home aids, establishing rehabilitation camps, educational and supporting
programs for patients, and their families are among their activities.[[10]] By improving patients' understanding of themselves and their abilities, providing
sport programs, and voluntary groups, they can play their role in the process of rehabilitation.[[19]]
Home-based primary care
Home-based primary care means scheduled appointments of multidisciplinary medical
team visiting a TSCI patient in his/her home. The services provided by this team may
include – but not limited by – basic medical care, nursing, social service, physical,
and occupational therapy.[[11]] Medical services and appointment frequencies may vary based on patients' health
condition and organization provides these services. In these programs, a nurse is
usually responsible for maintaining health condition by providing nursing service,
and occupational therapist is in charge of promoting functional capacity through training
special skills, recognition of physical barriers, and finding solutions to resolve
them, providing assistive devices, and offering necessary architectural changes at
home.[[34]]
Sexual problems are among commonly neglected issues by a multidisciplinary team because
of lack of required knowledge. Few studies have evaluated effectiveness of educating
multidisciplinary team about sexual problems of TSCI patient and reported magnificent
results.[[35]],[[36]]
In home-based primary care, along with no need to transport patients between hospital
and home (which prevents subsequent complications and harms), multidisciplinary medical
team can closely evaluate real-life situation of patients and provide individualized
solutions and recommendations about needed home aids and architectural modification.
In addition, secondary problems will be detected sooner, and in case of emergencies,
patients would be timely referred to hospital and subsequent costs will be reduced.
Innovative models/methods
Transitional rehabilitation
The idea of developing this model was to make sure that rehabilitation program would
continue especially shortly after transition from hospital. Transition period is very
stressful for patients and their families and necessitates comprehensive support.
In this model, rehabilitation strategies are designed based on patient's needs and
goals to decrease hospital stay, reduce costs, and in addition to proceed rehabilitation
in patient's real-life circumstance. This model consists of services such as nursing,
physiotherapy, occupational therapy, and social work professionals provided by a multispecialty
team. Discharging from hospital takes place 4 weeks sooner than regular discharge
plan. Before initiating the program, rehabilitation objectives are defined with participation
of both patients and caregivers, though further modification and reevaluation are
possible. Duration of the program is 4–8 weeks and frequency of visits depends on
needs and living condition of the patient.[[12]] Introducing this model to a patient living in a remote area can be challenging.
As Wallace and Kendall have reported, transitional rehabilitation in remote areas
faces five types of challenges including: (1) identification, education, coordination,
and funding of local care providers; (2) Family involvement in rehabilitation; (3)
contact with social and community supports; (4) specialist's support to problem solve
discharge needs; and (5) skill acquisition and transfer in a community environment.”[[37]]
Transitional rehabilitation should be a part of a long-term rehabilitation program
for patients with TSCI. Monitoring the advantages and disadvantages should be performed
even after finishing the program.
High tech devices have been commonly used in the home care programs of patients with
TSCI. Modern wheelchair designs, brain-based command signals, and locomotor training
are only some examples of utilization of modern technology in enhancing quality of
life and functional capacity of patients with TSCI.[[38]] Although there have been trials assessing their efficacy, recommending these devices
to every patient demands further understanding of their safety profile, availability,
and cost-effectiveness. In following paragraphs, we will discuss some examples of
technology-based interventions specifically designed to help patients with TSCI.
Electromyogram biofeedback
Although some paraplegic patients may be able to walk after injury, it would be with
some abnormalities such as Trendelenburg gait. In a gait retraining study, using a
permanent biofeedback tool both in clinic and home resulted in more progression in
walking skills compared to using it only in clinic.[[39]]
Functional electrical stimulation
Using functional electrical stimulation to improve gait skills in patients with incomplete
spinal cord injury showed promising results. Increasing blood supply, preventing muscle
atrophy, increasing walking speed, step width, and standing duration along with decreasing
dependency to aids are among its advantages.[[40]] As Kirshblum et al. said, this technique had also positive effects on “upper-extremity
use, bladder control, respiration, and cardiovascular and tissue health.”[[38]] Application of this technique as a part of home care strategy has been evaluated
in some studies.[[41]],[[42]],[[43]]
Telemedicine
In this method, high tech devices such as video conference are used to connect patients
with TSCI and the medical team even when they are miles away. This is especially of
value for patients living in distant areas from TSCI units. The telemedicine rehabilitation
team can include a physician, nurse, physical therapist, dietitian, psychologist,
and recreational therapist.[[44]] Furthermore, surveillance of noncomprehensive programs with smaller goals such
as improving hand function can be achieved using this method.[[45]] Several studies revealed efficacy of this technique in different aspects of rehabilitation
programs of patients with TSCI.[[46]],[[47]] Although this model showed promising results, further investigations should be
dedicated to prove its efficacy and cost-effectiveness compared to traditional methods.[[48]]
Discussion
This review is an attempt to better introduce and classify different aspects of home
care programs for patients with TSCI all around the world. Different fields of home
care including home aids/modification, home nursing and family help, social support,
home-based primary care, and novel models/methods have opened a new horizon toward
a more effective rehabilitation. A great number of papers have been published in this
field and yet there is an increasing trend to introduce more efficient strategies.
There is still a long road to establish a safe, widely accepted, and cost-effective
rehabilitation package in the setting of community and home for these patients.
Conducting clinical research in the field of TSCI rehabilitation is very difficult.
Sample heterogeneity and small size, ethical problems of not delivering rehabilitation
services to control group, impossibility of patient blinding, and lack of an appropriate
measurement tool along with financial problems are some difficulties.[[49]] Hence, nearly all investigators in TSCI home-based rehabilitation have only introduced
and described their findings, and there are no comparative studies performed. Thus,
future studies should be dedicated to intelligently designed clinical trials to evaluate
and compare clinical effectiveness of different strategies. Financial concerns are
another aspect of home care that has been neglected in previous studies. Hence, there
is a need to conduct cost-effectiveness studies to find the most affordable strategy.
It should be considered that rehabilitation of an individual with spinal cord injury
is not just a combination of separated parts coming together, but it includes all
aspects of life of a biopsychosocial person with a catastrophic disability. Hence,
studies investigating the effectiveness of complete packages of rehabilitation components
are mandatory.
