ABSTRACT
The multidisciplinary teams of today are working in-collaboration and as one unit to assess, set goals, evaluate and provide reliable interventions to the patients/client. The essence of conceptual framework of ICF provides an opportunity to achieve the common goals of activity limitation and participation restriction by adapting a holistic model of rehabilitation encompassing the psychological, physical and the emotional needs with the advent of new techniques and modernized technologies.
The new enabling approach is challenge faced by the health care providers where patient preferences, empowerment and health related quality of life are most essential. The review will provide a critical analysis on the barriers faced by the practitioner especially during clinical decision making. Psychosocial perspectives of the client that is the most ignored area is also emphasized in the review and also motivational aspects of the patients in promoting the evidence based practice and clinical decision making and ultimately focusing on the enablement of the disabled.
KEYWORDS
Enabling Approach, Evidence Based Practice, HRQoL, Clinical Decision Making, Psychological, Disability, Activity Limitation, Participation Restriction
Amna Aamir Khan
Assistant Professor
Ziauddin College of Physical
Therapy
Ziauddin University
Sumaira Imran Farooqui
Associate Professor, Principal
Ziauddin College of Physical
Therapy
Ziauddin University
[Khan AA, Farooqui SI. More enabling approach: a challenge for the practitioners- a critical review. Pak. j. rehabil. 2016;5(1):4-10]
INTRODUCTION
With the advent of research, the professionals and multidisciplinary teams have modified the notion of rehabilitation from optimizing the function of the client physically to the consideration of psychosocial aspects of life1,2. The element of rehabilitation was represented by World Health Organization’s International Classification of Functioning, Disability, and Health (ICF) where the health was stressed in terms of disability3,4. Several studies after 2007 were acknowledged for representing activity limitation and participation restriction especially for neurological diseases. Additionally, emphasis was laid s study on adapting a holistic model of rehabilitation encompassing the psychological, physical and the emotional needs of the disabled5,6.
Interestingly, the concept of disability was replaced from the medical model to the social model of disability where not only the impairments of the clients were dealt but the participation in the society was also considered7. The reason given by the professionals for adapting the medical model was due to the advent of new techniques and modernized technologies that have decreased the death rates8. Similarly, the increasing frequency and severity of the impairment due to the long term neurological disorder further raised the rate of disability 8,9. These disabilities restricted the patients to participate in the mainstreams of social activities7 thus affecting empowerment. Therefore, empowerment is considered to be a capability to make decisions, providing opportunities to live with individuality 10,11 where self-determination and independence are also considered12. The individuality achieved may enable the client in setting their own goals and creating new opportunities by removing the barriers to face the new environment13,14. Therefore a new concept emerged for the individuals with long term chronic disorders to restore the normal function, enabling and supporting to gain individuality and having control over them in the community15.
Both empowerment and enablement has been used simultaneously but empowerment is the process of providing the opportunity to the individual to take control where as enablement is supporting the individual to achieve the desired goal14. Although no universally agreed definition is being provided by the researcher for both enablement and empowerment but still are considered as multidimensional concepts with different individuals, communities and organizations providing different perspectives which is unique to every individual 1,16. Stewart et al. in a study distinguished between the two, where empowerment provides feeling to the disabled to have the control over ones’ self and work actively whereas enablement is about learning new skills, removing the barriers and exploring new areas14. However, empowerment and enablement both provides self-esteem, control over decisions and actions affecting the health as well as the opportunities to the disabled to master over the environmental factors17. Moreover, the emphasis was laid on the improvement of the physical, psychological and social aspects of life, where vocational training and activities of daily living were especially considered 8,14. Furthermore importance was given on the uniqueness of the work provided by enablement with the improvement in function and generation of a feeling of control by the individual. A framework was required where the patients desired goals were placed as the most significant and an integral part also fulfilling the treatment criteria of the professionals18. Therefore, an enablement framework was put forward that may be considers as an ideal for the disabled where the requirements, role, abilities, coping strategies and desires of the may be considered as well as creating a relationship between client and patient19
The first frame work for planning, implementing and evaluating patient’s education was presented by Stamleret al.20 where the testing of the framework against several content areas was done to ensure that the frame-work may be used for multiple-contents. The goal of the patient was considered as an integral part of the framework. Moreover, the idea of enablement was clarified by determining the defining attribute, constructing model, related and contrary cases and identifying antecedents and consequences20,21. While reviewing the literatures in the fields of sociology, health, psychology and education different concepts were presented where the conflicts were recorded between the psychological and sociological literatures. However, sociological literatures provided more of the negative perspective of the enablement then the psychological literatures22. Furthermore, the researcher also pointed out two major aspects of enablement frame work: firstly, the framework had identified the goals desired by the client, components required to complete the goals (that is rehabilitation) and comparison of the needs (such as to become healthy). Secondly, the framework may be used to plan, implement and evaluate the effective education with respect to the patient desires22. However, it is vital for the patient and cares to receive appropriate information and education from the essential resources in order to be an ‘informed patient’ 23,24 and to get involved in the decision-making. However, the reliability and validity of the information achieved by the patients is still questionable25.
Furthermore, enablement framework may also be considered as a significant approach for the disabled where confidence to control and manage one’s life at any situation is provided with the help of the health care professionals thus a step to become an ‘expert patient’26. The notion of the expert patient has been recently emerged to modernize the health programs27 and to provide a better quality of life27,28 by linking the patients’ ideas of empowerment26. Expert patients have confidence, information and skills to manage the disability by communicating with the professionals and developing the client-professional relationship. The expert patients are skilled with the communication and knowledge through the self-management/expert- program that are especially designed by the NHS for the long term and chronic neurological disorders especially stroke, multiple sclerosis, cerebral palsy26. Problem solving, decision making, resource utilization, discussion with the professionals and taking actions are the core skills taught to the expert patients during the self-management programs29. Moreover, self-management programs have been termed as a key towards the maintenance and improvement of health where patients’ desires are of fundamental importance26. Even though the literature has revealed that the expert-management programs have played a fundamental role in reducing the admission during the emergency incidents, readmission to the hospital and re-hospitalization30 yet the major difficulty faced by the patient is the level of disability that can only be managed rather than being cured. Paradoxically, compliance and management of the health both are expected by the patient’s expertise which may be suggested as a natural desire and a significant aspect of patient’s life31. The studies conducted by the researchers 23,31,32 previously have revealed the conflicts between the professionals and the expert patients due to the misinterpretation of the professional information by the patient and an insecurity of losing power by the practitioners33.
However, a study conducted by Prof. Julie Barlow has shown that expert management programs has not only reduced the severity of symptoms but has also improved life satisfaction among the disabled30 since are aimed to enable the patient to achieve the goals by making them more active. Another report documented in King’s Fund revealed that, 7% out of 9.1% people from the ethnic minority communities are at present using the expert-patient programs where participation depends on the extend of injury, age, social support and education29. However, different responses of the individuals with respect to the psychosocial problems faced by the disabled individually but NHS is taking keen interest to deal the problems through the expert-management programs especially in the rural and deprived areas26.
Another study was conducted to test the enablement of the patient in the highly-deprived areas before and after the consultation by using the Patient Enablement Instrument (PEI)34. The study assessed the impact of the encounter on the patient’s ability to cope with and the understanding of the health problem by using a General Health Questionnaire GHQ-12 and the distress was also documented35,36. A comparison made between the most and least deprived areas resulted in a decreased enablement in the most deprived area. However, an increase in the psychosocial stress of the patient, long term illness and GP stress were also documented for the most deprived area. However, a significant relationship was found between the severity of deprivement and professionals’ empathy. The results also indicates a lower satisfaction rate of patient in the most deprived that is GHQ= 41.6% which was reduced to almost half in the least deprived area that is 28.1%. Almost 30% of the patients wanted to discuss psychosocial problems whereas 65% documented more than one problem. However, the emphasis has been laid on considering the psychological and social conditions especially of the deprived area since these may lead to depression37.
Moreover, Hammell acknowledges majority of health care professionals while providing the interventions to improve the specific skills only focus on the targets to be achieved by the clients whereas neglecting the personal and psychosocial issues thereby unsatisfying the patients2. Although the prediction of the success of the treatment is directly depended on the patients’ satisfaction still physiotherapist are reluctant to communicate and provide realistic information38. The barrier for the physiotherapist is the extent and the time of recovery and to meet expectations of patients and caregivers such as high recovery is expected by the patients suffering from stroke before being discharged. Wiles et al. reported the expectation of the recovery while interviewing16 stroke patients and the physiotherapists in a longitudinal study39.
Three sessions of interviews were taken to assess the deficits of movement, function and mood. However, the motor deficits improved in the 1st and the 3rd sessions still the over-optimistic behavior of the patients towards the recovery was not appreciated by the physiotherapist. Therefore, a special consideration should be given by the physiotherapist towards the communication strategies since verbal therapies may provide skills to the clients to replace activity limitation and social restriction with enablement and participation40,41 as well as living well with impairments42.
Physiotherapist aims to implement the standardized treatment protocols for every individuals during rehabilitation still the level of management differs with respect to the level of disability9. However, outcome major remains similar that is to maximize the participation of the client in the environment7 where the life situations are dealt with on the daily basis. For this reason, natural environment such as home, school and community may be considered as the most essential to increase the motor behavior especially for children suffering from CP7. Researchers have documented that the interventions should be implemented where activities occur daily especially for the disabled children, since the motor learning skills may be established better when taken as a part of daily routine43 yet a number of studies neglected the environmental factors during the rehabilitation44. A study was conducted on 25 chronic stroke patients to examine the effectiveness of a four week dual-task exercise based program on the walking ability44. Results revealed a significant increase in the motor–task along with gait speed and cadence but the reliability of the study was questionable. Since, the increase in the gait speed and motor control were in the clinical setting where a controlled, predictable and uncluttered environment was present. On the other hand, a study conducted on 55 children suffering from mild to moderate spastic cerebral palsy, aged 2 to 7 years, receiving the functional physical therapy in the natural environment, improved the motor skill more than the improvement of the children abilities in the reference group as was measured on the Pediatric Evaluation of Disability Inventory (PEDI). Therefore, environment may be considered essential to teach the individuality especially to the children suffering from CP7.
Moreover, in a review of papers Mihaylov et al, identified various environmental factors that influence participation of the disabled children. However, other various barriers such as inappropriate footwear, medication, dependence, noise and unavailability of space restricted the participation and freedom of the children in the study45. In addition, other significant factors that influence the level of participation of the child such as building the structure, loss of income and provision of equipment considered as essential for rehabilitation were not considered32. Furthermore, the disabled child is depended directly or indirectly on the caregivers/ parents hence the parental awareness should be provided by the physiotherapists parental neglection has been documented. Also, while setting the goals for the disabled the caregiver/parents and the client both perspectives should be given priorities by the physiotherapist46. However, the enabling approach may reduce the burden the parents/care givers of the disabled child as a significant time is spent by the care giver and the rate is still increasing day by day. However, caring and care giving is a complex activity requiring set of knowledge, skills and values and the practitioners may take account of the complexities especially faced by the parents of the disabled suffering from chronic childhood illness as a disruption in the sense of control is seen in the mother leading to a decrease in empowerment47. An appreciation of shared-decision has been recorded in the literature where exchange of information, deliberation about the treatment options and then implementation of the treatment has been a suggested as significant19. However, a rehabilitation program tailored according to the needs and requirement of the individual may improve the participation in the community19. Mayo et al. interviewed 434 patients with 1st ever stroke in the community with a follow up of 2 years to estimate the influence of stroke on the extent of activity, participation and quality of life (QOL)37. A comparison was being made when 486 community- dwelling controls were interviewed by telephone. The researcher documented 90.6/100 on the Barthel Index for the stroke group whereas 39% of patients had limitation in functional activities. In addition, 54% reported limitations with higher-level activities of daily living where the housework and shopping, and 65% reported restrictions in participation in the community activities. Furthermore, the QOL reported to be 7 points lower than the controls on the SF-36 scale47. The researcher also indicated that almost 50% of the community-dwelling stroke population are unable to participate independently in the community since more than 70% had at least one difficulty in performing the activities of daily living (ADLs). As meaningful activity limitation along with boredom was also reported providing an indication of the worsening of the QOL which may be considered as the significant outcome measure in the clinical trials48. However, in another study a researcher after interviewing 28 families emphasized on the development of significant scale for the measurement of QOL for CP49.
Recently, the researchers are keener to explore the participation of the stroke patients more as may be considered as one of the most significant long term disorder that restricts the activities in the community. The evidence was presented in a study where the stroke patients documented to be among three most restricted disorders49. The comparison was made among 126 participants suffering from neuromuscular disease, rheumatoid arthritis, spinal cord injury, fibromyalgia on a recently developed questionnaire; Impact on Participation and Autonomy (IPA). More over emotional distress was found to be the most important contributing factor to the restriction faced by the participants. However, the major limitation of the study was the low response rate that may have directly affected the results and a lack of the controls may have induced a bias factor. However, multidimensional approaches such as the enabling approach may contribute to increase the QOL by decreasing the anxiety, depression and stress faced by the disabled.
Literature reports professionals as being an ‘agent’ where responsibility lies on the agent to provide the consumer (patient) the desired treatment50. A new approach has been placed by the researchers known as evidence based patient-choice (EBPC) approach where evidence-informed choice and shared decision making are both appreciated51. Therefore, the evidence based information is being provided to the patients in order to facilitate the abilities of the clients in making decisions. However, mutual respect, honesty trust may be considered as significant to promote the EBPC as well as the communication skills in the physiotherapist. Although the researchers appreciates EBPC as an enabling approach to enhance the participation of the disabled yet more research is required to implement into practice52.
However, different modernized technologies are being used by the researcher to provide comfort and feasibility to the disabled hence to encourage in decision making and planning goals with the practitioners. However, telemedicine, has been a new approach towards enablement by empowering the patient to convey the desires to the health care professionals however telemedicine may be considered a way to generate a positive excitement and enthusiasm to participate in the community however, researchers reported a optimistic approach as patients often find video interviews less life threatening then face to face interviewing. Although, professional anxiety and discomfort has been reported. Also, Tele-consultants may be found to be at risk of privacy and assessment especially with the long term neurological disorders leading to dissatisfaction for the professional. Moreover, telemedicine may be inappropriate with the disabled children where environmental modification and adaptation may be considered as most significant to increase the participation in the community. However, appropriate footwear, lowering the bed, widening the doors to allow the wheel chair access and many other factors may contribute to increase the participation of the children in the community. However, the participation may also be improved by reducing the cognitive skills44. Recently the development of novel assistive technologies devices such as Assistive Technology for Cognition (ATC) has shown remarkable results in improving the participation of the disabled by improving the functional activities such as visual, auditory and language. Moreover, ATC may assist the patients to work independently as well as help to return to work since disability is considered as a significant barrier to work. Moreover, dairies, calendars and pocket coaches may be used to enhance the participation as by providing independence to perform the activities of the daily living. However, the home-based rehabilitation programs may also be significant in provide optimal independence, teaching the problem-solving skills, building confidence and preparing for the life that is the external environment.
CONCLUSION
The more enabling approach may be a new beginning in the field of rehabilitation by enhancing participation, increasing power, individuality and confidence among the disabled. Physiotherapist and other health care professionals are aiming to restore the normal functions in the society, increasing the decision-making and providing greater satisfaction, despite of the persistent sequelae of illness, such as impairments and disabilities. However, NHS has played a vital role in promoting the enabling approach by providing the information through internet and even and recruiting the people to teach self-management program in the language as feasible to the patients. The information gained through internet, as eHealth programs are considered quickest, latest and the most appropriate information. Moreover, the information attained has enabled the patients to be self-esteemed and has increased the power of making decisions. Moreover, new and modernized strategies are used by the professionals such as telemedicine, modification of the external environment and ATC to promote the participation of the disabled in the society. Although a number of challenges may be faced by the health care professionals in maintaining the enabling approach especially in the rural and deprived area where the access to the services are limited (Mercer et al., 2007). Yet the practitioners may cope up with the barriers faced and especially by considering the psychosocial perspectives of the client and taking keen interest in promoting the EBPC and ultimately focusing on the enablement of the disabled.
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