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
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.
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.
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).
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.
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.
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.