Print Friendly

Carolyn Ho

Leslie B. Glickman1, PT, PhD, George Chimatiro2, PT, MSc, Laurie Neely1, DPT, Nicole White3, E. Shannon Walters4, Megan Warres1

1University of Maryland, School of Medicine, Department of Physical Therapy and Rehabilitation Science (PTRS), Baltimore MD. 2Kachere Rehabilitation Centre, Blantyre, Malawi. 3School of Social Work, University of Maryland, Baltimore MD. 4School of Nursing, University of Maryland, Baltimore MD.

This study investigated the community reintegration status of patients with neurological disorders discharged from the Kachere Rehabilitation Centre (Kachere) in Malawi. The purpose of this study was to determine patient-perceived disability based on specific tasks in the activity and participation dimensions of the International Classification of Function (ICF). The limited studies that focused on patients in countries with few resources have indicated that a number of problems interfered with their return to prior functional status, particularly problems of reintegrating into their home and community environments.1, 2, 3, 4, 5 With a mixed-method design, the researchers conducted interviews with patients poststroke (CVA) and various other neurological disorders (N-CVA). They quantified patient self-reports of disability using the World Health Organization’s Disability Assessment Schedule 2.0 (DAS). A researcher-designed Home Observation Data Form (HOD) provided descriptive environmental information. Analysis of DAS data supported the research hypothesis that patients perceived moderate to severe levels of disability. These findings did not correlate with diagnosis or gender. Environmental barriers such as narrow passageways within, surrounding, and lead- ing to the homes; rough and hilly terrain; water sources outside the home; lack of cars; and long distances to markets and places of worship appeared to play a significant role in limiting home and community par- ticipation activities. This study’s results documented patient status, verified literature for similar patients in countries with few resources, provided programming considerations for Kachere staff with future patients and supported potential use of the DAS for similar research. Potential implications reach beyond immediate patient needs based on the WHO World Report on Disability.6

Introduction

The rehabilitation program at the Kachere Rehabilitation Centre (Kachere) is the only one of its kind in Malawi, a southeastern African country of 16 million people. Kachere, a 40-bed public hospital, mainly admits adults needing intense rehabilitation ser- vices for neurological disorders. Prevailing patient diagnoses include stroke (due mostly to uncontrolled hypertension) and spinal cord insults (due to trauma, infection and tumors). Kachere’s services are comprised primarily of physiotherapy, but also include occupational therapy, medical treatment and nursing care. The focus of Kachere’s physiotherapists and rehabilitation technicians is restoring bodily movements and functions after disease or injury.7 Based on patient diagnosis, functional recovery is variable. Treatment sessions helping patients to relearn old skills and learn new ones are intense and lengthy. This is similar to rehabilitation programs in well-resourced countries. In Malawi, family members (known as guardians), take up residence at the bedside at Kachere and actively participate in their loved ones’ care.8 Guardians provide ongoing emotional support and physical assistance when needed during physiotherapy.

Following discharge from Kachere, patients return to their prior home environments with variable, (frequently limited,) sets of abilities. At times, they suffer from physical limitations that interfere with participation in the workplace, the home and the community. Hilly and uneven terrain, narrow passageways within of and outside their homes and outdoor sources of water and toilets become major challenges for patients needing wheelchairs, canes, crutches, or walkers. Public transportation is difficult to use be- cause of distance and inconsistent availability. The challenges faced by these patients are aggravated when they also suffer from additional cognitive and/or emotional difficulties. Depression is relatively common in individuals who have undergone a significant change in neurological status. Studies show that an estimated 33% of individuals post stroke experience depression.9 Rehabilitation providers give suggestions to patients for meeting home and community needs during various therapy sessions that focus on mitigating physical impairments.6 Specifically, they promote daily self-care as well as household and mobility activities, while fostering a sense of safety, independence, security and confidence. They offer suggestions for easier access around the home, such as widening doorways and installing ramps, or addressing safety hazards by removing obstacles and rearranging furniture. Therapists typically customize their teaching strategies based on individual patient skill levels and goals.

According to WHO, people with disabilities tend to have poorer health outcomes, less education, less economic participation and higher rates of poverty than those without disabilities.6 Such is the case in Malawi, where backyard farming is the prime source of subsistence and annual earnings average less than 321 US dollars/year. Life expectancy in Malawi is 54.8 years, with com- municable diseases beingas the leading cause of death. The percent- age of literate adults is 61.3%, but only a limited number (10.4%) attended school beyond the primary years.10 Published literature is sparseon the topic of post-rehabilitation community reintegration in countries with few resources is sparse. One small-sample Malawi study interviewed eight Kachere patients with stroke to identify environmental reintegration barriers.1 The literature from other countries describes a wide range of difficulties that patients experienced in prior social and vocational roles after rehabilitation discharge. Overall, difficulty walking, carrying out household chores, driving and managing finances were associated with lower satisfaction with community reintegration status and dependence on others for survival in their community.1,3,4,5 Personal and environmental factors were the main barriers to reintegration and limitations to participation. Barriers to reintegration included resuming household responsibilities, shopping, earning a living and joining in community activities.2 Like other rehabilitation program leaders in countries with few resources, Kachere leaders felt their program focused more on patient impairments, with limited and perhaps insufficient attention to home and community participation (Figure 1).6,11 These observations mirrored those of authors who stated that inpatient rehabilitation goals, in general, lacked a whole-person, patient- centered approach.2 With limited government and other outside funding resources, providing necessary rehabilitation services in this populous country poses a challenge to even the most creative of clinicians.6 In addition, there is little-to-no follow up provided to patients following discharge from Kachere. Both at the clinic and within the local districts, there are limited outpatient rehabilitation services that can provide support and determine patient adaptation to home and community environments. New and pertinent information on reintegration status with examples of environmental barriers could provide valuable feedback for the Kachere patient discharge planning process and helpful information to government agencies for rehabilitation program funding considerations. The ultimate goal expressed by Kachere leaders was to facilitate more meaningful patient life outcomes. Building on that goal and relevant literature, this study provided reintegration status data for a small sample of Kachere patients post discharge. The study aims were to: 1) describe patient-perceived disability as a measure of community reintegration status, 2) explore whether patient-perceived disability varied by diagnosis or gender and 3) describe possible environmental barriers to reintegration.

Screen Shot 2015-11-15 at 6.20.02 PM

Screen Shot 2015-11-15 at 6.19.58 PM

Screen Shot 2015-11-15 at 6.20.06 PM

Screen Shot 2015-11-15 at 6.20.10 PM

Methods

Participants Using consecutive sampling, the researchers identified a population of 35 patients who met the inclusion/exclusion criteria from the Kachere discharged patient files (Table 1).12 These criteria were formed based on the WHO DAS 2.0 guidelines, the Institutional Review Board protocols on the protection of human subjects and travel logistics for realistic patient access.

Design This descriptive cross-sectional study used a quantitative approach to determine patient perception of disability based on home and community activity and participation, with additional descriptors of the pertinent environment. According to WHO, “activity is the execution of a task or action by an individual. Participation is involvement in a life situation,”13 both noted in the ICF dimensions. The research study hypotheses were as follows: 1) patients perceived moderate to severe levels of disability post discharge from Kachere that significantly hampered community reintegration; and 2) there was a relationship between patient-perceived levels of disability and gender or diagnosis. For example, perceived level of disability could be higher for females who might have more difficulty managing daily household responsibilities than males.1 Perceived disability could also be higher for wheelchair-bound clients with spinal cord injury than those with stroke.3 Because the research was conducted in a resource-limited country, the researchers were sensitive to ethical considerations and standards. Trained native translators were employed to obtain patient consent for participation. Only adult participants who were not considered part of a “vulnerable” population were selected for the study. The researchers undertook this study as a sustainability project in collaboration with the Kachere leadership team, and plan to extend the project’s implementation beyond the data collection and analysis phases. The researchers ensured that the federal, institutional and ethical protection of human subjects per the Institutional Review Board (IRB) processes in the US and the Malawi College of Medicine Research and Ethics Committee (COMREC) in Blantyre, Malawi. Instrumentation The researchers conducted patient interviews using the 12-item interviewer-administered World Health Organization’s Disability Assessment Schedule 2.0 (DAS) to determine patients’ self-perceptions of their disabilities. The DAS is a universally accepted, patient perception of disability tool based on established reliability and validity standards. It was developed by the WHO and is grounded in the ICF frame- work. It quickly measures constructs similar to those in the SF 36 Short Health Survey (SHS), a generic patient-reported survey of health.16 Uniquely, the DAS also measures day-to-day functioning across a range of activity domains and distinguishes symptoms, disability and subjective appraisal.14, 15

The DAS contains a preliminary section with general living location, gender, age, education level and marital and work status. There are 12 key questions relating to patient difficulty completing daily tasks (Table 2). These questions use a Likert-type rating scale, from 1 to 5, with 1=None, 2=Mild, 3=Moderate, 4=Severe, 5=Extreme or cannot do. Key question summary scores (totals) range from 12 to 60, with 12 being the least perception of disabil- ity and 60 being the highest. The DAS uses the following patient definitions of difficulty performing an activity: increased effort, discomfort or pain, slowness and changes in the way an individual performs an activity. The interview includes three additional questions about the number of days out of the last 30 in which patients experienced difficulty completing activity and participation tasks. The researchers developed a Home Observation Data (HOD) form to describe the patient’s environment, based on the Malawi – 2010 Demographic and Health Survey (MDHS) and the DAS questions. It contains descriptors for types of dwelling, floor and wall materials, water and toileting facilities, living arrangements and distances to the main road, toilet facilities, markets and places of worship. These descriptors and details helped to identify possible environmental barriers to accessibility. The researchers verified the face validity of the HOD form since it provided the specific information of interest about the home environment.

Data collection, analysis and interpretation Using Kachere’s discharge records, the researchers verified patient diagnostic information. Admission and discharge dates were used to calculate rehabilitation length of stay (LOS). The WinSTATTM Statistics Add-In for MicrosoftTM Excel (version 2009.1) and simple Excel calculations were used to analyze key data. Descriptive statistics included summary scores, means, ranges, median and percentages. Due to the small sample size and ordinal data, the Mann-Whitney U-Test, a nonparametric procedure, was used to determine relationships between summary scores, diagnosis and gender, with a typical statistical significance level set a priori at ≤0.05 (p).

Results

Thirty-one patients met the screening inclusion/exclusion criteria. However, during the initial in-person interview session, the researchers decided to exclude two patients due to suspected cognitive limitations (not apparent from prior contacts) and age limitations discovered while updating information during the initial in-person encounter. Complete DAS key question data were then available for 28 patients, 12 female and 16 male. There was incomplete demographic data for one patient’s education level and another one for LOS. Fifteen patients had experienced non-hemorrhagic cerebrovascular accident (CVA) (53.5%) and 13 had experienced some other neurological event (N-CVA) (46.4%) due to complete or incomplete spinal cord paralysis (from trauma, infection and spinal tumors), Guillain-Barré Syndrome or basal ganglia tumor.

Based on the DAS preliminary section, patients ranged from 21-89 years of age, with a mean of 51.6. The CVA group was significantly older than the N-CVA group (Table 3). Years of education ranged from 0-19 years, with a mean of 8.8. A significant number of patients (78.5%) were unemployed or unable to attend school for “health reasons” (DAS terminology). Prior patient occupations included farmer, student, laborer, entrepreneur, government worker and teacher. LOS ranged from 13-164 days, with a mean of 56.2. For patients with CVA, LOS was 49.6 and for N-CVA, LOS was 63.3. Patient summary scores ranged from 12-53, with a mean of 31.9 and median of 32.5 (Figure 1). Seventeen of 28 scores (60.7%) fell within the ranges from 30-60. Key questions showing the most reintegration difficulty in descending order were: taking care of household responsibilities, day-to-day work or school, joining in community activities and walking one kilometer. The Mann-Whitney U-Test showed no significant relationships between patient summary scores and diagnosis or gender; that is, under the constraints of this study, diagnosis and gender appeared to have no influence on perceived disabilities (Table 4). The HOD quantitative data providedwas helpful for understanding the patient home and community environment (Table 5). All homes were constructed using permanent housing materials. Most had cement floors and brick walls covered with plaster. Most patients (67.8%) used water piped into the home or communal water sources and 67.8% had toilets outside of the primary resi- dence. Most of the patients (67.8%) required physical assistance for various self-care and home activities. 

Discussion

This small-sample study verified the hypothesis that post-discharge, many Malawi patients of Kachere (60.7%) had moderate to severe levels of disability that significantly hampered community reintegration into their home and community settings. The difficulties were in several key ICF dimensions of activity and participation. However, there were no relationships between the perceived levels of disability and specific diagnosis or gender. Environmental barriers within homes and surroundings appeared to play a major role in the degree of successful home and community reintegration. A majority of patients (67.8%) had to use toilet facilities outside of the primary residence, often crossing narrow, uneven terrain in order to access these facilities. For some patients, this situation was compounded by the need to use mobility devices. Public transportation and community activities were frequently located beyond a reasonable distance from the homes and therefore proved inconvenient or too challenging to use. A large number of patients (78.5%) stated that their unemployed status was due to “health reasons.” For some patients, physical impairments limited return to prior employment such as running a business or completing household responsibilities. One patient indicated his government po- sition was no longer available to him following a stroke, although he felt mentally and physically capable of performing it. While this study led to similar conclusions as reported by other authors for patients in countries with few resources, it did not consider the effect of motor function or use of mobility devices on community reintegration.1,3,4,5 Both Obembe et al. and Hamzat, Olaleye and Akinwumi showed a positive relationship between functional ability or motor function and reintegration in patients with stroke.4,5 For patients with spinal cord injury (SCI) using mobility devices, Scovil, Ranabhat, Craighead and Wee reported greater diffi- culties with community participation. All of these factors could have affected the current study’s results.3 Limitations of this observational study included the small sample size and selection convenience. There was patient subjectivity in perception of disability due to misinterpretation or questionable understanding of DAS information and/or instructions. This misinterpretation could be due to educational background, current cognitive status and overall prior experiences. The researchers accepted patient bias based on the nature of the DAS. Study limitations restricted population generalizability of the results beyond the focus of this study. This study documented this patient sample’s post-discharge status at one point in time (1-24 months since discharge). This could have affected the study’s results depending on the specific length of time from the initial neurological event to the time of participation in the study. It verified the literature describing similar patients in countries with few resources, supported potential use of the DAS for similar research applications and provided programming considerations for Kachere staff with future patients.

Potential implications for the staff at Kachere include enhancing training approaches for patients and guardians with a broader analysis of patient discharge requirements in relation to the specific community environment. For example, staff could be trained to determine whether there is a need for alternative living arrangements or whether reasonable modifications to the existing home setting can be made to ease patient reintegration. When appropriate, home visits with patient and staff pre- and post-discharge and/or caregiver-provided diagrammatic/descriptive information could enhance this type of data collection. The HOD used in this research study could provide guidance on content for gathering relevant home visit data. From a training perspective, guardians could be educated to provide decreasing amounts of patient assistance to promote participation in daily activities. By deemphasizing a “do-it-all approach,” patients would focus on improving weaker skills and perhaps obtain a greater sense of accomplishment and confidence. This study is important from a research perspective and adds to the limited literature on the topic of patients in countries with fewer resources and specifically for patients in Malawi. This evidence-based approach could help support future expansion of rehabilitation services in countries with limited resources. Information gained from this study could also help to improve the Kachere discharge planning process and address pressing environmental barriers. Following the example of the WHO World Report on Disability, the results could help to create “enabling environments, develop rehabilitation and support services…to the benefit of people with disabilities and the wider community” (Preface).6 There is a need for future studies with a larger patient sample in other geographic areas of Malawi, as well as locations with few resources compared to those with ample resources. Establishing motor skill level at the time of the home visit compared to status at rehabilitation discharge would provide further data about change in skill level relative to reintegration status.

Acknowledgments

The authors thank Gad Alon, PT, PhD, for his statistical data analyses and assistance with the interpretation of results, the participant students and faculty and Center for Global Health Initiatives who provided the faculty and students with the opportunity and financial support for this study. The IRB (US) and COMREC (Malawi) approved this study in June 2014.

References

1 Chimatiro, G. L., & Rhoda, I. (2013). Environmental barri- ers to reintegration experienced by stroke clients post discharge from a rehabilitation center in Malawi. South African Journal of Physiotherapy, 70(1), 20-25.
2 Cott, C.A.,Wills, R., & Devitt, R. (2007). Continuity, transi- tion and participation: Preparing clients for life in the community post-stroke. Disability & Rehabilitation, 29(20/21), 1566-1574.
3 Scovil, C.Y., Craighead, I. B., & Wee, J. (2012). Follow-up study of spinal cord injured patients after discharge from inpatient rehabilitation in Nepal in 2007. Spinal Cord, 50, 232-237.
4 Obembe, A. O., Boladale, M., Johnson, O. E., Agunbiade, T., & Emechete, A. (2013). Community reintegration in stroke survivors: Relationship with motor function and depression. Hong Kong Physiotherapy Journal, 31, 69- 74.
5 Hamzat, T. K., Olaleye, O. A., & Akinwumi, O. B. (2014). Functional ability, community reintegration and par- ticipation restriction among community-dwelling fe- male stroke survivors in Ibadan. Ethiopian Journal of Health Sciences, 24(1), 43-48.
6 WHO Report on Disability (2011). Retrieved from http://www.who.int/disabilities/world_report/2011/ en.
7 Fielder, S., Mpezeni, S., Benjamin,, L., & Cary, I. (2013). Physiotherapy in Malawi – a step in the right direction. Malawi Medical Journal, Published online September 30, 2013, http://www.medcol.mw/mmj/?p=1545
8 Hoffman, M., Mofolo, I., Salima, C., Hoffman, I., Zadro- zny, S., Martinson, F., & Van Der Horst, C. (2012). Utili- zation of family members to provide hospital care in Malawi: The role of hospital guardians, Malawi Medical Journal, 24(4), 74-78.
9 Hackett, M. L., Yapa, C., Parag, V., & Anderson, C. S. (2005). Frequency of depression after stroke. Stroke, 36, 1330-1340.
10 UNICEF (2012). Retrieved from http://www.unicef.org/ infobycountry/malawi_statistics.html
11 Jette, A. M. (2006). Toward a common language for function, disability, and health. Physical Therapy 86; 726-734.
12 Domhold, E. (2000). Physical Therapy Research: Prin- ciples and applications. J. B. Saunders Press, Phila.
13 World Health Organization (2002).Towards a common language for functioning, disability, and health (ICF). WHO, Geneva. Retrieved from http://www.who.int/ classifications/icf/en.
14 Garin, O., Ayuso-Mateos, J. L., Almansa, J., Nieto, M., Chatterji, S., Vilagut, G., Alonso, J. et al. (2010). Valida- tion of the “World Health Organization Disability Assessment Schedule, WHODAS-2” in patients with chronic diseases, Health Quality Life Outcomes, 8(51). Published online May 19, 2010.doi:10.1186/1477- 7525-8-51
15 Üstün, T. B., Chatterji, S., Kostanjsek, N., Rehm, J., Ken- nedy, C., Epping-Jordan, J., … Pull, C. in collaboration with WHO/NIH Joint Project (2010). Bulletin of the World Health Organization; Type: Research; Article ID: BLT.09.067231.
16 Malawi Demographic and Health Survey (MDHS) (2010). Retrieved from http://www.nsomalawi.mw/im- ages/stories/data_on_line/demography/MDHS2010/ DHS%20Key%20Findings.pdf.
17 SF-36 Short Health Survey (SHS). Retrieved from http://www.rand.org/health/surveys_tools/mos/mos_ core_36item.html
18 World Health Organization’s Disability Assessment Schedule 2.0 (WHO DAS). Retrieved from http://www. who.int/classifications/icf/whodasii/en.
19 Bhogal, S. K., Teasell, R. W., Foley, N. C., Speechley, M. R. (2003). CommunityReintegrationAfterStroke,Topics in Stroke Rehabilitation; 10(2), 107-129.
20 Portney,L.G.,Watkins,M.P.(2009).FoundationsofClin- ical Research Applications to Practice. Upper Saddle River, NJ: Pearson Prentice Hall.