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Experience of People With Disabilities in Haiti Before and After the 2010 Earthquake: WHODAS 2.0 Documentation
Archives of Physical Medicine and Rehabilitation journal homepage: www.archives-pmr.org Archives of Physical Medicine and Rehabilitation 2015;96:1606-14
ORIGINAL RESEARCH
Experience of People With Disabilities in Haiti Before and After the 2010 Earthquake: WHODAS 2.0 Documentation Kim Parker, MASc,a James Adderson, CP,a Marc Arseneau, MSc, RN,b Colleen O’Connell, MD, FRCPCc From the aAssistive Technology, Capital District Health Authority, Nova Scotia Rehabilitation Centre, Halifax, Nova Scotia; bTeam Canada Healing Hands, Inuvik, Northwest Territories; and cTeam Canada Healing Hands, Fredericton, New Brunswick, Canada.
Abstract Objective: To describe the functioning and participation of people with disabilities seen in Haiti Team Canada Healing Hands clinics before and after the 2010 earthquake. Design: Cross-sectional survey. Setting: Rehabilitation clinics. Participants: A convenience sample of individuals attending Team Canada Healing Hands clinics (NZ194): individuals who completed the survey before the 2010 earthquake (nZ72) and individuals who completed the survey after the 2010 earthquake (nZ122). Interventions: Not applicable. Main Outcome Measures: The World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0). Results: Overall WHODAS 2.0 scores before and after the 2010 earthquake were in the top 10th percentile of population normative data, where higher scores reflect greater disability. A median increase (6.6 points) in disability was reported after the earthquake (Mann-Whitney U, PZ.055). There was a significant increase (Mann-Whitney U, P<.001) in WHODAS 2.0 scores related to mobility (18.8 points), life activities (30 points), and participation (16.7 points) domains after the earthquake. Conclusions: Persons in Haiti with a disability attending Team Canada Healing Hands clinics reported a low level of functioning. The increase in WHODAS 2.0 scores related to mobility, life activities, and participation domains suggests that the 2010 earthquake had a negative impact on functioning of this population and provides additional information on the responsiveness of the WHODAS 2.0 in limited resource settings. Future work can include using WHODAS 2.0 to monitor the impact of rehabilitation service and advocacy initiatives in Haiti and similar locations. Archives of Physical Medicine and Rehabilitation 2015;96:1606-14 ª 2015 by the American Congress of Rehabilitation Medicine
In 2011 the Pan American Health Organization reported that there were an estimated 800,000 individuals with disabilities in Haitidw10% of the total population.1 Haiti is considered to be one of the poorest countries in the world, where 80% of the population lives on less than US$2 per day.2 Before 2000, access to rehabilitation services in Haiti was limited, with little to no support from the government in providing access or standardized training to therapists or prosthetic and orthotic
Presented in part to Canadian Association for Prosthetics and Orthotics, August 4e7, 2010, Quebec City, Quebec, Canada. Disclosures: none.
technicians. Access to assistive devices such as prosthetics, orthotics, and wheelchairs remains inadequate, with considerable unmet need. To address limited access to rehabilitation, various nongovernmental organizations have emerged to provide rehabilitation services in Haiti, including Healing Hands for Haiti International Foundation and Team Canada Healing Hands. Healing Hands for Haiti International Foundation established an outpatient rehabilitation and training clinic, Kay Kapab Clinic, in Port-au-Prince, Haiti. Team Canada Healing Hands has partnered with Healing Hands for Haiti International Foundation at the Kay Kapab Clinic, with a focus on providing rehabilitation services including education, training,
0003-9993/15/$36 - see front matter ª 2015 by the American Congress of Rehabilitation Medicine http://dx.doi.org/10.1016/j.apmr.2015.05.008
Disabilities in Haiti care, and support in the development of sustainable rehabilitation programs. On January 12, 2010, there was a devastating earthquake off the coast of Haiti near the capital, Port-au-Prince. Because of the earthquake, there were w300,000 injuries, 150 spinal cord injuries (SCIs), and 1200 to 1500 amputations.3-6 A recent populationbased survey of disability in the Port-au-Prince region of Haiti estimated the prevalence of disability to be 4.1%, with less than half of those disabled receiving medical rehabilitation. The most common disability domains were difficulties with vision, mobility, and cognition.7 In addition to the increase in demand for services to address the physical needs of people injured, there was a noted increase in demand for psychosocial support services.8 At the start of this study in 2009, relatively little had been published about the experiences of people with disabilities in Haiti. In 2001, Healing Hands for Haiti International Foundation interviewed 164 people with amputations throughout Haiti and found only 25% had a prosthetic limb. Many reported lack of access and cost as the primary barriers to receiving prosthetic care.9 A similar survey of 140 individuals who had lower limb amputations was completed after the 2010 earthquake. By using the Trinity Amputation and Prosthesis Experience Scales, they found that amputees reported better adjustment functionally than psychosocially.10 Measurement of functioning and disability with a tool that captures a range of health issues is important for documenting not only the impact of health care initiatives but all local policy and infrastructure that are important influences on the experience of having a disability. The World Health Organization (WHO)’s International Classification of Functioning, Disability and Health provides a framework to describe and classify health and disability with respect to body functions and structure, activities, and participation in the context of their environmental and personal factors.11 Based on the conceptual basis of the International Classification of Functioning, Disability and Health, the WHO developed a cross-cultural questionnaire to measure function and disabilitydthe World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0).12 The WHODAS 2.0 was developed to correspond directly to the International Classification of Functioning, Disability and Health’s activities and participation framework dimensions, key outcomes for rehabilitation programs, and services. The objectives of this study were developed in 2 phases. Phase 1 occurred before the 2010 earthquake. At this time, members of Team Canada Healing Hands sought to obtain a more thorough picture of the functioning and participation of people with disabilities receiving rehabilitation care services at Team Canada Healing Hands clinics in Haiti. As such, the WHODAS 2.0 was identified as the most culturally appropriate measure of function and disability for the pilot implementation. The pilot study would indicate the feasibility of administering the WHODAS 2.0 and provide initial benchmark measures of disability previously not available that could be used to monitor future service, training, and advocacy initiatives. The primary objective of this study was to describe the functioning and participation of individuals with
List of abbreviations: SCI spinal cord injury WHO World Health Organization WHODAS 2.0 World Health Organization Disability Assessment Schedule 2.0
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1607 disabilities attending rehabilitation clinics in Haiti through the pilot implementation of the WHODAS 2.0 questionnaire. As a result of the 2010 earthquake, a second phase (phase 2) of the study was developed. Team Canada Healing Hands members sought to investigate whether changes in functioning and participation of individuals with disabilities had occurred since the 2010 earthquake and to reestablish disability measures for service and advocacy initiatives. A second administration of the WHODAS 2.0 would also provide an opportunity to investigate the responsiveness of the questionnaire to a natural disaster. The damage to the local infrastructure and loss of services would likely result in more difficulties encountered in functioning and participation of individuals with disabilities. A second objective of this study was to investigate whether individuals attending Team Canada Healing Hands clinics reported an increased difficulty in functioning and participation since the 2010 earthquake.
Methods Study design and participants A cross-sectional survey was conducted during 2 time periods, November 9 to 13, 2009 (phase 1), and June 5 to July 9, 2012 (phase 2), before and after the 2010 earthquake. Participants older than 16 years who attended Team Canada Healing Hands rehabilitation clinics and clinics held by affiliated partners and Team Canada Healing Hands staff during these 2 time periods were recruited. Participants were required to understand Haitian Creole, French, or English; to follow verbal instructions; and to be over the self-reported age of 16. Individuals who attended a Team Canada Healing Hands clinic were approached by the attending clinician to seek consent to participate. The study was verbally explained by the clinician, and a letter of information about the study was supplied. If the individual was interested in participating, they were introduced to a member of Team Canada Healing Hands or staff/volunteers affiliated with Team Canada Healing Hands who had been trained to administer the survey. Informed consent was given by the participant, agreeing to answer survey questions in a face-to-face interview. No identifying information (eg, name, address, and identification numbers) was collected. Ethical approval for this study was obtained from the Research Ethics Board of the Capital District Health Authority and was approved by the Director of Operations of Healing Hands for Haiti International Foundation in Haiti.
Measures The primary outcome measure was the WHODAS 2.0. The WHODAS 2.0 has been shown to be a reliable and valid measure of function and disability across different health conditions, cultures, ages, and sexes.13 Research suggests that the WHODAS 2.0 has acceptable internal consistency, reliability, validity; is responsive to change; and differentiates between people with high and low levels of SCI impairment.13-18 The WHODAS 2.0 includes 6 domains related to an individual’s activity and participation. These 6 domains include understanding and communicating, mobility, self-care, getting along with people, life activities, and participation. A score is generated from an individual’s self-report on the difficulty he/she has experienced in performing the task. Domain and total scores can range from 0 to
1608 100, reflecting no difficulty to extreme difficulty due to the health condition. Reliability and validity studies on the WHODAS 2.0 report total scores for the general population to be below 10, whereas scores for people with physical disabilities are closer to 30. Interviewer-administered, self-administered, and proxy versions are available in a short (12-item) and long (36-item) format in various languages on the WHO website. This study used the 36item WHODAS 2.0 in both French and English. WHODAS 2.0 scores were calculated using an item response theoryebased scoring and a simple approach to missing data.12 In addition, the survey included questions on respondents’ age, sex, health problem, and/or cause of disability, and assistive devices used. On the basis of their measures of self-reported health problem and/or cause of disability, participants were considered belonging to 1 of the 4 groups: (1) health problems due to an amputation (upper and/or lower limbs); (2) stroke; (3) SCI; and (4) other. “Other” included a range of other health problems such as broken bones, muscle weakness, and missing or unclear responses.
Procedures During phase 1 of the study, researchers with Team Canada Healing Hands visited Haiti from November 9 to 13, 2009. All 2009 surveys were conducted at the Kay Kapab Clinic, a Team Canada Healing Hands outpatient rehabilitation clinic located in Port-au-Prince. Individuals attending Team Canada Healing Hands clinics during this time period were potentially referred from other hospitals, were physician referrals from community practice, or simply attended the clinic because of word-of-mouth publicity. Individuals with typical health problems seen in Team Canada Healing Hands clinics included people who had a stroke or presented with amputations or musculoskeletal injuries. Phase 2 (after the earthquake), a second administration of the WHODAS 2.0, was conducted at the Kay Kapab Clinic, other Team Canada Healing Hands partner sites in Port-au-Prince established in response to the earthquake, and a partner site in the Cap-Haitian region between June 5 and July 9, 2012. Individuals were referred through the same pathways as in 2009, except referrals from nongovernmental organizations providing health services after the earthquake. Services provided during both visits included rehabilitation assessment and recommendations that involved services such as physiotherapy and provision of assistive devices including prosthetics, orthotics, and wheelchairs. All interviews were administered by members of Team Canada Healing Hands and a translator or by Team Canada Healing Hands staff. Team Canada Healing Hands staff members assisting with the administration of the survey were trained by research team members in the research protocol for approaching and recruiting potential participants and in the administration of the survey, including the WHODAS 2.0 questionnaire. WHODAS 2.0 training materials were reviewed by research team members along with Team Canada Healing Hands staff.12,19 Team Canada Healing Hands staff observed research team members administering initial surveys followed by administering the survey themselves to the participants, while research team members providing any needed support. In 2009, the English or Canadian French self-administered version of the WHODAS 2.0 was used.20-22 Owing to issues with literacy, research team members used the self-administered version in an interview style, reading the questions to participants in French or Haitian Creole. Based on the 2009 pilot experience, the interviewer-administered version of the WHODAS
K. Parker et al 2.0 was used in 2012.12 In addition to the demographic information obtained after the earthquake, 1 question was added to the survey to determine whether the participant’s health problems were due to the earthquake. Completed surveys were kept in a secure location in Haiti within a facility secured by Team Canada Healing Hands. After the completion of the study visit, all surveys were returned to Nova Scotia Rehabilitation Centre and results were entered into an electronic database.
Statistical analysis Statistical analyses were performed using SPSS version 20 (2011).a Descriptive statistics (cross tabulations, means SDs, medians, ranges) were performed on all data. A floor or ceiling effect was considered present if >15% of the participants scored 0 or 100, respectively, on domains.23 Data normality was determined using the Shapiro-Wilk test, and if assumptions were not met, nonparametric statistics were used. Chi-square tests were used to examine differences in the proportion of male and female participants, health problems, or those working or in school before and after the earthquake. To investigate the responsiveness of the WHODAS 2.0 to the impact of a natural disaster, pre- and post- earthquake measures were compared. Independent t tests (Mann-Whitney U, P.007) were used to compare ages and WHODAS 2.0 total and domain scores between pre- and post- earthquake groups. Responsiveness of the WHODAS 2.0 was explored through the calculation of effect size. A 1-way analysis of variance was used to investigate differences in WHODAS 2.0 total scores based on self-reported health problem before and after the earthquake (Kruskal-Wallis). Within each self-reported health problem group, differences in WHODAS 2.0 total scores before and after the earthquake were determined (Mann-Whitney U, P.017). Bonferroni corrections were applied to reduce type I error in interpreting the data. Unless otherwise noted, the level of statistical significance was defined as P.05.
Results A total of 72 surveys from the November 2009 pre-earthquake visit and 122 from the June 2012 post-earthquake visit were completed. Thirty-two surveys were incomplete because of missing WHODAS 2.0 items: 8 before the earthquake and 24 after the earthquake. The pilot implementation of the WHODAS 2.0 before the earthquake indicated that Team Canada Healing Hands staff was willing to help recruit participants and administer the questionnaire. The local clinic community and attending patients were receptive to participation. Some issues with regard to wanting payment for participation were encountered in the first reported pilot implementation, but this was not seen after the earthquake. However, after the earthquake, some participants struggled emotionally with some of the questions relating to the participation domain. Specifically this included the following questions: 6.3 “How much of a problem did you have living with dignity because of the attitudes and actions of others?” 6.4 “How much time did you spend on your health condition, or its consequences?” and 6.5 “How much have you been emotionally affected by your health condition?” A summary of population descriptors is given in table 1. There were no significant differences between respondents before and after the earthquake with respect to self-reported age or sex. www.archives-pmr.org
Disabilities in Haiti Table 1
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Population descriptors
Descriptor Sex Male Missing Age (y) Mean SD Median Range Missing People working or in school Self-reported health problem Amputation Stroke SCI Other Assistive devices used Prosthetics Orthotics Cane or crutch Walker Wheelchair
Pre-Earthquake: November 9e13, 2009 (nZ72)
Post-Earthquake: June 5eJuly 9, 2012 (nZ122)
35 (48.6) 4 (5.6)
51 (41.8) 0 (0.0)
47.318.4 49.5 18e91 0 (0.0) 59 (81.9)
48.817.1 51.0 16e80 0 (0.0) 31 (25.4)
19 28 0 25
(26.4) (38.9) (0.0) (34.7)
14 46 20 42
(11.5) (37.7) (16.4) (34.4)
3 3 37 3 9
(4.2) (4.2) (51.4) (4.2) (12.5)
10 7 36 10 42
(8.2) (5.7) (29.5) (8.2) (34.4)
NOTE. Values are n (% within visit) or as otherwise indicated.
Significant differences were noted in the number of individuals who indicated that they were working or in school in 2009 (81.9%) as compared with those who indicated that they were working or in school in 2012 (25.4%). Generally, main selfreported health problems were the same between visits, with the exception of 16.4% of the study population in 2012 having an SCI
compared to none reported in the 2009 study population. Of those surveyed in 2012, 31 (25.4%) identified having their health problem before the earthquake, 25 (20.5%) indicated their health problem was due to the earthquake, and 2 (1.6%) had missing or unclear responses. Figure 1 provides the WHODAS 2.0 total and domain scores. There was a median increase (6.6 points) in disability scores after the earthquake (Mann-Whitney U, PZ.055) with a moderate effect size of .35. Table 2 provides missing data, floor and ceiling counts for WHODAS 2.0 domain scores, and individual questions. No participant had a WHODAS 2.0 total score of 0, indicating no difficulty due to their health condition. Similarly, no participant had a WHODAS 2.0 total score of 100. There were missing WHODAS 2.0 data for 11% of the sample before the earthquake and for 20% of the sample after the earthquake. The domain with the most missing data before the earthquake was getting along with people, whereas after the earthquake the increase in missing data was due to the life activities domain, with 20% of the postearthquake sample not answering any questions in the life activities domain. Of those not answering any of the questions in the life activities domain after the earthquake, half were people with SCI. Domain scores that significantly increased after the earthquake were related to mobility, life activities, and participation domains. Floor effects were present before and after the earthquake for understanding and communicating and getting along with people domains. Floor effects that were present only before the earthquake were for getting around and self-care domains. Ceiling effects were noted with 15.3% before the earthquake and 22.1% after the earthquake, indicating extreme difficulty in the life activities domain. WHODAS 2.0 scores did not differ significantly between health problem groups after the earthquake (fig 2). WHODAS 2.0 scores were significantly different between health problem groups before the earthquake (Kruskal-Wallis, PZ.023), with the greatest differences noted between individuals with amputations and those
Fig 1 Median WHODAS 2.0 total and domain scores. )Post-earthquake values were significantly different from pre-earthquake values (P<.007). The possible range for WHODAS 2.0 total and domain scores was 0 to 100.
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Table 2
Floor, ceiling, and missing data for WHODAS 2.0 domain scores and individual questions Pre-Earthquake
Post-Earthquake
Floor
Ceiling
Missing
Floor
Ceiling
Missing
1: Understanding and communicating 1.1 Concentrating on doing something for ten minutes? 1.2 Remembering to do important things? 1.3 Analysing and finding solutions to problems in day-to-day life? 1.4 Learning a new task, for example, learning how to get to a new place? 1.5 Generally understanding what people say? 1.6 Starting and maintaining a conversation? 2: Getting around 2.1 Standing for long periods such as 30 minutes? 2.2 Standing up from sitting down? 2.3 Moving around inside your home? 2.4 Getting out of your home? 2.5 Walking a long distance such as a kilometre [or equivalent]? 3: Self-care 3.1 Washing your whole body? 3.2 Getting dressed? 3.3 Eating? 3.4 Staying by yourself for a few days? 4: Getting along with people 4.1 Dealing with people you do not know? 4.2 Maintaining a friendship? 4.3 Getting along with people who are close to you? 4.4 Making new friends? 4.5 Sexual activities? 5(1): Life activities 5.1 Taking care of your household responsibilities? 5.2 Doing most important household tasks well? 5.3 Getting all the household work done that you needed to do? 5.4 Getting your household work done as quickly as needed? 5(2): Life activities for those in work/school 5.5 Your day-to-day work/school? 5.6 Doing your most important work/school tasks well? 5.7 Getting all the work done that you need to do? 5.8 Getting your work done as quickly as needed? 6: Participation in society 6.1 How much of a problem did you have in joining in community activities (for example, festivities, religious or other activities) in the same way as anyone else can?
22 29 29 27 28 30 31 15 22 24 25 23 19 14 21 22 34 21 20 34 35 38 42 48 9 24 23 20 10 17 25 26 25 23 0 32
0 6 3 4 4 0 0 3 15 10 7 10 27 3 21 13 3 20 0 1 1 1 0 8 11 17 18 17 20 19 24 23 21 21 0 16
3 2 1 2 3 4 2 1 3 3 3 3 1 1 3 1 1 2 5 3 5 2 4 9 2 2 3 2 2 0 0 1 0 1 1 2
20 59 53 40 76 99 78 8 19 25 36 19 17 14 34 34 78 26 35 76 98 69 89 82 1 6 9 8 4 1 4 8 10 1 0 13
0 2 1 8 3 0 0 13 52 42 36 29 59 5 39 13 8 70 0 14 6 10 3 13 27 46 51 40 62 1 7 1 4 3 1 64
3 3 3 3 3 3 3 3 3 3 3 3 6 3 3 3 3 14 3 3 3 3 3 8 25 24 24 26 25 0 0 0 0 0 5 3
(30.6) (40.3) (40.3) (37.5) (38.9) (41.7) (43.1) (20.8) (30.5) (33.3) (34.7) (31.9) (26.4) (19.4) (29.2) (30.5) (47.2) (29.2) (27.8) (47.2) (48.6) (52.8) (58.3) (66.7) (12.5) (33.3) (31.9) (27.8) (13.9) (28.8) (42.4) (44.1) (42.4) (39.0) (0.0) (44.4)
(0.0) (8.3) (4.2) (5.6) (5.6) (0.0) (0.0) (4.2) (20.8) (13.9) (9.7) (13.9) (37.5) (4.2) (29.2) (18.0) (4.2) (27.8) (0.0) (1.4) (1.4) (1.4) (0.0) (11.1) (15.3) (23.6) (25.0) (23.6) (27.8) (32.2) (40.7) (39.0) (35.6) (35.6) (0.0) (22.2)
(4.2) (2.8) (1.4) (2.8) (4.2) (5.6) (2.8) (1.4) (4.2) (4.2) (4.2) (4.2) (1.4) (1.4) (4.2) (1.4) (1.4) (2.8) (6.9) (4.2) (6.9) (2.8) (5.6) (12.5) (2.8) (2.8) (4.2) (2.8) (2.8) (0.0) (0.0) (1.7) (0.0) (1.7) (1.4) (2.8)
(16.4) (48.4) (43.4) (32.8) (62.3) (81.1) (63.9) (6.6) (15.6) (20.5) (29.5) (15.6) (13.9) (11.5) (27.9) (27.9) (63.9) (21.3) (28.7) (62.3) (80.3) (56.5) (73.0) (67.2) (0.8) (4.9) (7.4) (6.5) (3.3) (3.2) (12.9) (25.8) (32.2) (3.2) (0.0) (10.6)
(0.0) (1.6) (0.8) (6.6) (2.4) (0.0) (0.0) (10.7) (42.6) (34.4) (29.5) (23.8) (48.4) (4.1) (32.0) (10.6) (6.5) (59.0) (0.0) (11.5) (4.9) (8.2) (2.4) (10.6) (22.1) (37.7) (41.8) (32.8) (50.8) (3.2) (22.6) (3.2) (12.9) (9.7) (0.8) (52.4)
(2.5) (2.5) (2.5) (2.5) (2.5) (2.5) (2.5) (2.5) (2.5) (2.5) (2.5) (2.5) (4.9) (2.5) (2.5) (2.5) (2.5) (11.5) (2.5) (2.5) (2.5) (2.5) (2.5) (6.6) (20.5) (19.7) (19.7) (21.3) (20.5) (0.0) (0.0) (0.0) (0.0) (0.0) (4.1) (2.5)
(continued on next page)
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Domain Question
3 (2.5)
24 (19.7)
77 (63.1)
0 (0.0)
Discussion
NOTE. Values are n (% within visit).
8 (11.1) 0 (0.0) 0 (0.0)
1 (1.4) 22 (30.5) 25 (34.7)
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who had a stroke. No significant differences were found on examining WHODAS 2.0 scores by health problem before and after the earthquake. The most notable difference found was in people with amputations who had a nonsignificant median increase of 15.1 in disability score after the earthquake.
0 (0.0)
6 (4.9) 45 (36.9) 22 (30.5) 16 (22.2)
1 (1.4)
6 (4.9)
5 (4.1) 81 (66.4) 48 (66.7) 12 (16.7)
1 (1.4)
6 (4.9)
3 (2.5) 41 (33.6) 30 (41.7) 10 (13.9)
2 (2.8)
4 (3.3)
1 (0.8) 31 (25.4) 34 (47.2) 0 (0.0)
2 (2.8)
6 (4.9)
3 (2.5) 26 (21.3) 10 (13.9) 40 (55.5)
4 (5.6)
4 (3.3)
5 (4.1)
43 (35.2)
Missing Ceiling Floor Ceiling
12 (16.7)
Floor
25 (34.7)
6.2 How much of a problem did you have because of barriers or hindrances in the world around you? 6.3 How much of a problem did you have living with dignity because of the attitudes and actions of others? 6.4 How much time did you spend on your health condition, or its consequences? 6.5 How much have you been emotionally affected by your health condition? 6.6 How much has your health been a drain on the financial resources of you or your family? 6.7 How much of a problem did your family have because of your health problems? 6.8 How much of a problem did you have in doing things by yourself for relaxation or pleasure? WHODAS 2.0 total score
Missing
11 (9.0)
39 (32.0)
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Domain Question
Pre-Earthquake Table 2 (continued )
2 (2.8)
Post-Earthquake
Disabilities in Haiti
The primary objective of this study was to describe the functioning and participation of individuals with disabilities attending rehabilitation clinics in Haiti through the pilot implementation of the WHODAS 2.0 questionnaire. A second objective of this study was to investigate whether individuals attending clinics reported an increased difficulty in functioning and participation since the 2010 earthquake. Overall WHODAS 2.0 scores of Haitians with disabilities attending Team Canada Healing Hands clinics were in the top 10th percentile of population normative data, which were 10% greater than published typical data for people with physical disabilities. This suggests that our surveyed population reports greater difficulty in functioning and participation both before and after the earthquake as compared to population normative data.12 Median WHODAS 2.0 scores after the earthquake were 6.6 points higher than those before the earthquake, with significantly more difficulties encountered in the mobility, life activities, and participation domains after the earthquake. Conducting the survey within Team Canada Healing Hands clinics is feasible as indicated by the willingness of Team Canada Healing Hands staff to assist with participant recruitment, survey administration, and the obtained completed surveys. The emotional response to some WHODAS 2.0 questions that was noted only after the earthquake likely reflects the impact of the earthquake on their emotional well-being; this finding was also supported by reports of an increase in demand for mental health support after the earthquake.8 Few studies have used the WHODAS 2.0 to measure the functioning of people with physical disabilities in limited resource environments or after natural disasters. A 2001 study of individuals with traumatic SCI living in Kabul and Herat, Afghanistan, found that the WHODAS 2.0 mean score of 55.7 placed them in the top 0.5% of the greatest reported difficulty in functioning and participation, indicating greater disability, as compared to population normative data.24 In our study, participants with SCI generally report similar levels of disability and function. In comparison, data from a more resourced setting based on individuals living with SCI had median WHODAS 2.0 scores ranging from 27 to 32, which were close to typical values obtained for people with physical disabilities. This lower disability score is likely a reflection of both the environment and the ability to adjust to the injury.17,18 In comparison, individuals with recent lower limb amputations in a resourced setting had 12-item WHODAS 2.0 scores placing them in the top 5th percentile for disability normative scores.25 Our sampled population with amputations reported much lower WHODAS 2.0 scores before the earthquake, indicating fewer difficulties encountered in functioning and participation. This discrepancy may be due to cultural differences in function and participation expectations. It is not clear whether a 6.6-point increase in WHODAS 2.0 score after the earthquake, with a moderate effect size of .38, is a meaningful change. To provide some context, WHODAS 2.0 effect sizes have ranged from .44 to 1.07 in studies investigating interventions in populations with back pain, schizophrenia, osteoarthritis, and alcohol dependence.12,13 The WHODAS 2.0 total
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Fig 2 Median WHODAS 2.0 scores by self-reported health diagnosis. No self-reported SCI was surveyed before the earthquake. The possible range for WHODAS 2.0 total scores was 0 to 100.
score has been shown to be able to distinguish between individuals with higher and lower impairment level SCIs, with disability score differences ranging from 6.6 to 13.6.17,18 The measured increase in WHODAS 2.0 disability score suggests that the earthquake had some impact on the reported disability level. The item response theoryebased scoring of the WHODAS 2.0 results in different weighting of some questionnaire items, which may have contributed to the lack of significant differences between visits. A likely result of the earthquake was the significant decrease in the percentage of the population working or in school because of the damage of the local infrastructure and reflected in the increased levels of difficulty in life activities and participation domains. This may have implications for the poverty experienced by people with disabilities in Haiti and subsequently reflected in increased disability scores. Changes in WHODAS 2.0 scores may also be a reflection of the difference in rehabilitation case mix seen in Team Canada Healing Hands clinics before and after the earthquake. Selfreported health problems were generally the same between visits. The exception was observed in 16.4% of the study population with SCI in 2012 as compared with 0% of the study population in 2009. Our study included 20 individuals with SCI, an estimated 7% of Haitians with SCI due to the earthquake. This is a population that was not typically seen in the rehabilitation setting before the earthquake. One possible reason for this is thought to be the result of low survival rates for people who initially survived severe SCIs, which is consistent with other underresourced settings. The international response to the 2010 earthquake resulted in an increase in survival for people with SCI.4 This population may be overrepresented because surveys were conducted 1 day at a clinic with a focus on SCI management, the Cap-Haitian region clinic. Individuals with amputations are likely underrepresented in the postearthquake study population. After the earthquake, the population
with amputations typically seen in Team Canada Healing Hands clinics were, at the time, being referred to a temporary physical rehabilitation center. This was a partner clinic, but one of many partner clinics surveyed after the earthquake in Port-au-Prince. Levels of disability and function remained essentially the same across health problems before and after the earthquake. The only group to indicate increased WHODAS 2.0 scores after the earthquake was individuals with amputations, which may be a reflection of different levels of amputation in the population surveyed before and after the earthquake. This, in addition to the inclusion of people with SCI who reported the second highest WHODAS 2.0 scores, may have influenced the overall increase in median WHODAS 2.0 score after the earthquake. The increased number of individuals with injuries, specifically people with SCI not previously seen before the earthquake, and the influx of aid after the earthquake have led to twice as many wheelchairs being used by the population sampled. This highlights the need to address the appropriate provision of wheelchairs and wheelchair skills training.26 The WHO has developed guidelines for wheelchair provision in less-resourced settings, and it has been recommended that these guidelines be implemented in Haiti.27 This also highlights a need to help advocate for greater inclusion of people with disabilities and to plan accordingly in the infrastructure rebuilding and health care service program delivery. It is interesting to note the increase of missing data in the postearthquake visit. This seems to be due to the difficulty in answering questions in the life activities domain after the earthquake. It may be due to the fact that many are still residing in temporary housing, so the concept of household tasks has changed and is not relevant to their current situation. This is also likely reflected in the increased ceiling effect in the life activities domain after the earthquake. This may be especially true for participants with SCI, half of which were unable to answer any questions in www.archives-pmr.org
Disabilities in Haiti this domain. Because of this, half the participants with SCI did not contribute to the WHODAS 2.0 total score, which may account for lack of significant increase in total disability score after the earthquake. This has important implications in the use of the WHODAS 2.0 in the assessment of catastrophic events. This may require reframing the concept of home and household tasks to reflect the new living situation. Another option would be to exclude the life activities domain, which has been done when using the WHODAS 2.0 in long-term care facilities where individuals do not have household tasks to perform.28 It is recommended that future studies using the WHODAS 2.0 after catastrophic events use a mixed methods approach and obtain qualitative perspectives as well.
1613 WHODAS 2.0 in limited resource settings. Moreover, this study highlights the limitation in activities and participation experienced by people with disabilities in Haiti before the earthquake and suggests that Team Canada Healing Hands and other nongovernmental organizations have an opportunity in partnership with the Haitian community to help advocate for greater inclusion of people with disabilities. Future work can include using WHODAS 2.0 to monitor the impact of rehabilitation service and advocacy initiatives in Haiti and similar locations.
Supplier a. IBM Corp.
Study limitations As this was the first reported pilot implementation of the WHODAS 2.0 in Haiti, there are several potential limitations. First, there should be caution in interpreting study results because the WHODAS 2.0 has not been validated specifically in Haiti, but has been evaluated in other low-income countries and shown to be culturally sensitive. We were unable to obtain a methodologically appropriate translation (panel of experts, forward and backward translation, and testing) of the survey into Haitian Creole, and subsequently French and English versions had to be used, relying on local Haitian research team members to provide Haitian Creole translation. Second, different WHODAS 2.0 instrument versions and training materials were used, which may account for some differences in the obtained results, although WHODAS 2.0 domain-specific questions remained the same between visits. Third, Team Canada Healing Hands clinics operate in minimally resourced conditions and local staff were used to recruit and conduct study interviews. Because of the impact of the 2010 earthquake, a structured study design was not feasible. Although we encouraged data collectors to capture information on the number of patients approached, it was not consistently recorded and subsequently we cannot calculate a formal response rate. Nor was a formal sampling frame available to indicate the total population with disabilities; thus, we cannot determine the representativeness of our convenience sample. Despite this limitation, the study used local clinic staff to administer the survey, which was highly regarded by the local clinic community and attending patients. The post-earthquake sample was drawn from a larger geographical area and occurred over a greater duration of time, which may have biased the sample obtained. Individuals attending Team Canada Healing Hands clinics before and after the earthquake were primarily from an urban, upper-middle socioeconomic population, as these were the individuals who had the ability (transportation) to access services. Subsequently, rural and lower-income populations were underrepresented in this study.
Conclusions To our knowledge, this is the first study to explore the experience of people with disabilities in Haiti, as measured using the WHODAS 2.0. The increase in WHODAS 2.0 score related to mobility, life activities, and participation domains suggests that the 2010 earthquake had a negative impact on functioning, while also providing additional information on the responsiveness of the
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Keywords Activities of daily living; Earthquakes; Haiti; Outcome assessment (health care); Rehabilitation; Social participation
Corresponding author James Adderson, CP, Assistive Technology, Capital District Health Authority, Nova Scotia Rehabilitation Centre Site, 1341 Summer St, Halifax, NS, Canada B3H 4K4. E-mail address: [email protected].
Acknowledgments We thank Riche Zamor, PhD, Executive Director of Healing Hands for Haiti, for supporting the participation of local Haitian staff in this project and Mary Halpine, MD, for providing research site lead in 2012. We also thank Yasmine Edouard, Lesly Danger, Herold Lojuste, and Louis-Charles Gimps, for assisting in the administration of the survey in Haiti.
References 1. Pan American Health Organization. Disability and rehabilitation fact sheet, Haiti PAHO/WHO Technical Cooperation 2010-2011. Available at: http://www.paho.org/hai/index.php?optionZcom_ content&viewZarticle&idZ7015&ItemidZ249&langZen. Accessed September 24, 2014. 2. The World Bank. World development indicators. Washington (DC): The World Bank; December 20, 2013. Available at: http://data. worldbank.org/country/haiti. Accessed September 24, 2014. 3. Handicap International. Haiti: turning disaster into strength. After the earthquake: two years of action. France: Handicap International; December 7, 2011. Available at: http://reliefweb.int/sites/reliefweb.int/ files/resources/haiti_turning_disaster_into_strength.pdf. Accessed April 18, 2013. 4. Burns AS, O’Connell C, Landry MD. Spinal cord injury in postearthquake Haiti: lessons learned and future needs. PM R 2010;2:695-7. 5. Arie S. Work of 125 aid agencies failed to create lasting rehabilitation services in Haiti, study shows. BMJ 2012;344:e2952. 6. Redmond AD, Mardel S, Taithe B, et al. A qualitative and quantitative study of the surgical and rehabilitation response to the earthquake in Haiti, January 2010. Prehosp Disaster Med 2011;26: 449-56.
1614 7. Danquah L, Polack S, Brus A, et al. Disability in post-earthquake Haiti: prevalence and inequality in access to services. Disabil Rehabil 2015;37:1082-9. 8. Pan American Health Organization. Mental health fact sheet, Haiti PAHO/WHO Technical Cooperation 2010-2011. Available at: http://www.paho.org/hai/index.php?optionZcom_content&viewZ article&idZ7015&ItemidZ249&langZen. Accessed October 9, 2014. 9. Bigelow J, Korth M, Jacobs J, Anger N, Riddle M, Gifford J. A picture of amputees and the prosthetic situation in Haiti. Disabil Rehabil 2004;26:246-52. 10. Randolph MG, Elbaum L, Wen P, et al. Functional and psychosocial status of Haitians who became users of lower-limb prostheses as a result of the 2010 earthquake. J Prosthet Orthot 2014;26:177-82. 11. World Health Organization. Towards a common language for functioning, disability and health: ICF. Geneva: World Health Organization; 2002. ¨ stu¨n TB, Kostanjsek N, Chatterji S, Rehm J, editors. Measuring 12. U health and disability: manual for WHO Disability Assessment Schedule WHODAS 2.0. Geneva: World Health Organization; 2010. Available at: http://www.who.int/classifications/icf/whodasii/en/. Accessed September 24, 2014. 13. Ustun TB, Chatterji S, Kostanjsek N, et al. Developing the World Health Organization Disability Assessment Schedule 2.0. Bull World Health Organ 2010;88:815-23. 14. Posl M, Cieza A, Stucki G. Psychometric properties of the WHODASII in rehabilitation patients. Qual Life Res 2007;16:1521-31. 15. Schlote A, Richter M, Wunderlich MT, et al. WHODAS II with people after stroke and their relatives. Disabil Rehabil 2009;31:855-64. 16. Von Korff M, Crane PK, Alonso J, et al. Modified WHODAS-II provides valid measure of global disability but filter items increased skewness. J Clin Epidemiol 2008;61:1132-43. 17. van der Zee CH, Post MW, Brinkhof MW, Wagenaar RC. Comparison of the Utrecht Scale for Evaluation of Rehabilitation-Participation with the ICF Measure of Participation and Activities Screener and the WHO Disability Assessment Schedule II in persons with spinal cord injury. Arch Phys Med Rehabil 2014;95:87-93. 18. Wolf AC, Tate RL, Lannin NA, Middleton J, Lane-Brown A, Cameron ID. The World Health Organization Disability Assessment Scale, WHODAS II: reliability and validity in the measurement of
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activity and participation in a spinal cord injury population. J Rehabil Med 2012;44:747-55. World Health Organization. WHODAS IIddisability assessment schedule training manual: a guide to administration. Geneva: World Health Organization; 2000. Hudson M, Steele R, Taillefer S, Baron M; Canadian Scleroderma Research Group. Quality of life in systemic sclerosis: psychometric properties of the World Health Organization Disability Assessment Schedule II. Arthritis Rheum 2008;59:270-8. Baron M, Hudson M, Caron J, et al; McGill Early Arthritis Research Group. Canadian French Version of the World Health Organization Disease Assessment Schedule II (WHODAS II): translation, test-retest stability, and internal consistency in patients with rheumatoid arthritis. Paper presented at: Canadian Rheumatology Association Annual Meeting. March 2-5, 2005; Mont Tremblant, Quebec, Canada. J Rheumatol 2005;32:1403. Baron M, Hudson M, Caron J, Buchigniani M, Taillefer S, Panopalis P; McGill Early Arthritis Research Group. Preliminary study of the validity of the World Health Organization Disease Assessment Schedule II (WHODAS II) in patients with early inflammatory arthritis. Paper presented at: Canadian Rheumatology Association Annual Meeting; March 2-5, 2005; Mont Tremblant, Quebec, Canada. J Rheumatol 2005;32:1403. Terwee CB, Bot SD, de Boer MR, et al. Quality criteria were proposed for measurement properties of health status questionnaires. J Clin Epidemiol 2007;60:34-42. Deconinck H. The health condition of spinal cord injuries in two Afghan towns. Spinal Cord 2003;41:303-9. Coffey L, Gallagher P, Desmond D. Goal pursuit and goal adjustment as predictors of disability and quality of life among individuals with a lower limb amputation: a prospective Study. Arch Phys Med Rehabil 2014;95:244-52. Dalhousie University. The Wheelchair Skills Program (Version 4.2). Available at: www.wheelchairskillsprogram.ca. Accessed October 9, 2014. Borg J, Khasnabis C. Guidelines on the provision of manual wheelchairs in less-resourced settings. Geneva: World Health Organization; 2008. Rocha V, Marques A, Pinto M, Sousa L, Figueiredo D. People with dementia in long-term care facilities: an exploratory study of their activities and participation. Disabil Rehabil 2013;35:1501-8.
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ORIGINAL RESEARCH
Experience of People With Disabilities in Haiti Before and After the 2010 Earthquake: WHODAS 2.0 Documentation Kim Parker, MASc,a James Adderson, CP,a Marc Arseneau, MSc, RN,b Colleen O’Connell, MD, FRCPCc From the aAssistive Technology, Capital District Health Authority, Nova Scotia Rehabilitation Centre, Halifax, Nova Scotia; bTeam Canada Healing Hands, Inuvik, Northwest Territories; and cTeam Canada Healing Hands, Fredericton, New Brunswick, Canada.
Abstract Objective: To describe the functioning and participation of people with disabilities seen in Haiti Team Canada Healing Hands clinics before and after the 2010 earthquake. Design: Cross-sectional survey. Setting: Rehabilitation clinics. Participants: A convenience sample of individuals attending Team Canada Healing Hands clinics (NZ194): individuals who completed the survey before the 2010 earthquake (nZ72) and individuals who completed the survey after the 2010 earthquake (nZ122). Interventions: Not applicable. Main Outcome Measures: The World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0). Results: Overall WHODAS 2.0 scores before and after the 2010 earthquake were in the top 10th percentile of population normative data, where higher scores reflect greater disability. A median increase (6.6 points) in disability was reported after the earthquake (Mann-Whitney U, PZ.055). There was a significant increase (Mann-Whitney U, P<.001) in WHODAS 2.0 scores related to mobility (18.8 points), life activities (30 points), and participation (16.7 points) domains after the earthquake. Conclusions: Persons in Haiti with a disability attending Team Canada Healing Hands clinics reported a low level of functioning. The increase in WHODAS 2.0 scores related to mobility, life activities, and participation domains suggests that the 2010 earthquake had a negative impact on functioning of this population and provides additional information on the responsiveness of the WHODAS 2.0 in limited resource settings. Future work can include using WHODAS 2.0 to monitor the impact of rehabilitation service and advocacy initiatives in Haiti and similar locations. Archives of Physical Medicine and Rehabilitation 2015;96:1606-14 ª 2015 by the American Congress of Rehabilitation Medicine
In 2011 the Pan American Health Organization reported that there were an estimated 800,000 individuals with disabilities in Haitidw10% of the total population.1 Haiti is considered to be one of the poorest countries in the world, where 80% of the population lives on less than US$2 per day.2 Before 2000, access to rehabilitation services in Haiti was limited, with little to no support from the government in providing access or standardized training to therapists or prosthetic and orthotic
Presented in part to Canadian Association for Prosthetics and Orthotics, August 4e7, 2010, Quebec City, Quebec, Canada. Disclosures: none.
technicians. Access to assistive devices such as prosthetics, orthotics, and wheelchairs remains inadequate, with considerable unmet need. To address limited access to rehabilitation, various nongovernmental organizations have emerged to provide rehabilitation services in Haiti, including Healing Hands for Haiti International Foundation and Team Canada Healing Hands. Healing Hands for Haiti International Foundation established an outpatient rehabilitation and training clinic, Kay Kapab Clinic, in Port-au-Prince, Haiti. Team Canada Healing Hands has partnered with Healing Hands for Haiti International Foundation at the Kay Kapab Clinic, with a focus on providing rehabilitation services including education, training,
0003-9993/15/$36 - see front matter ª 2015 by the American Congress of Rehabilitation Medicine http://dx.doi.org/10.1016/j.apmr.2015.05.008
Disabilities in Haiti care, and support in the development of sustainable rehabilitation programs. On January 12, 2010, there was a devastating earthquake off the coast of Haiti near the capital, Port-au-Prince. Because of the earthquake, there were w300,000 injuries, 150 spinal cord injuries (SCIs), and 1200 to 1500 amputations.3-6 A recent populationbased survey of disability in the Port-au-Prince region of Haiti estimated the prevalence of disability to be 4.1%, with less than half of those disabled receiving medical rehabilitation. The most common disability domains were difficulties with vision, mobility, and cognition.7 In addition to the increase in demand for services to address the physical needs of people injured, there was a noted increase in demand for psychosocial support services.8 At the start of this study in 2009, relatively little had been published about the experiences of people with disabilities in Haiti. In 2001, Healing Hands for Haiti International Foundation interviewed 164 people with amputations throughout Haiti and found only 25% had a prosthetic limb. Many reported lack of access and cost as the primary barriers to receiving prosthetic care.9 A similar survey of 140 individuals who had lower limb amputations was completed after the 2010 earthquake. By using the Trinity Amputation and Prosthesis Experience Scales, they found that amputees reported better adjustment functionally than psychosocially.10 Measurement of functioning and disability with a tool that captures a range of health issues is important for documenting not only the impact of health care initiatives but all local policy and infrastructure that are important influences on the experience of having a disability. The World Health Organization (WHO)’s International Classification of Functioning, Disability and Health provides a framework to describe and classify health and disability with respect to body functions and structure, activities, and participation in the context of their environmental and personal factors.11 Based on the conceptual basis of the International Classification of Functioning, Disability and Health, the WHO developed a cross-cultural questionnaire to measure function and disabilitydthe World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0).12 The WHODAS 2.0 was developed to correspond directly to the International Classification of Functioning, Disability and Health’s activities and participation framework dimensions, key outcomes for rehabilitation programs, and services. The objectives of this study were developed in 2 phases. Phase 1 occurred before the 2010 earthquake. At this time, members of Team Canada Healing Hands sought to obtain a more thorough picture of the functioning and participation of people with disabilities receiving rehabilitation care services at Team Canada Healing Hands clinics in Haiti. As such, the WHODAS 2.0 was identified as the most culturally appropriate measure of function and disability for the pilot implementation. The pilot study would indicate the feasibility of administering the WHODAS 2.0 and provide initial benchmark measures of disability previously not available that could be used to monitor future service, training, and advocacy initiatives. The primary objective of this study was to describe the functioning and participation of individuals with
List of abbreviations: SCI spinal cord injury WHO World Health Organization WHODAS 2.0 World Health Organization Disability Assessment Schedule 2.0
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1607 disabilities attending rehabilitation clinics in Haiti through the pilot implementation of the WHODAS 2.0 questionnaire. As a result of the 2010 earthquake, a second phase (phase 2) of the study was developed. Team Canada Healing Hands members sought to investigate whether changes in functioning and participation of individuals with disabilities had occurred since the 2010 earthquake and to reestablish disability measures for service and advocacy initiatives. A second administration of the WHODAS 2.0 would also provide an opportunity to investigate the responsiveness of the questionnaire to a natural disaster. The damage to the local infrastructure and loss of services would likely result in more difficulties encountered in functioning and participation of individuals with disabilities. A second objective of this study was to investigate whether individuals attending Team Canada Healing Hands clinics reported an increased difficulty in functioning and participation since the 2010 earthquake.
Methods Study design and participants A cross-sectional survey was conducted during 2 time periods, November 9 to 13, 2009 (phase 1), and June 5 to July 9, 2012 (phase 2), before and after the 2010 earthquake. Participants older than 16 years who attended Team Canada Healing Hands rehabilitation clinics and clinics held by affiliated partners and Team Canada Healing Hands staff during these 2 time periods were recruited. Participants were required to understand Haitian Creole, French, or English; to follow verbal instructions; and to be over the self-reported age of 16. Individuals who attended a Team Canada Healing Hands clinic were approached by the attending clinician to seek consent to participate. The study was verbally explained by the clinician, and a letter of information about the study was supplied. If the individual was interested in participating, they were introduced to a member of Team Canada Healing Hands or staff/volunteers affiliated with Team Canada Healing Hands who had been trained to administer the survey. Informed consent was given by the participant, agreeing to answer survey questions in a face-to-face interview. No identifying information (eg, name, address, and identification numbers) was collected. Ethical approval for this study was obtained from the Research Ethics Board of the Capital District Health Authority and was approved by the Director of Operations of Healing Hands for Haiti International Foundation in Haiti.
Measures The primary outcome measure was the WHODAS 2.0. The WHODAS 2.0 has been shown to be a reliable and valid measure of function and disability across different health conditions, cultures, ages, and sexes.13 Research suggests that the WHODAS 2.0 has acceptable internal consistency, reliability, validity; is responsive to change; and differentiates between people with high and low levels of SCI impairment.13-18 The WHODAS 2.0 includes 6 domains related to an individual’s activity and participation. These 6 domains include understanding and communicating, mobility, self-care, getting along with people, life activities, and participation. A score is generated from an individual’s self-report on the difficulty he/she has experienced in performing the task. Domain and total scores can range from 0 to
1608 100, reflecting no difficulty to extreme difficulty due to the health condition. Reliability and validity studies on the WHODAS 2.0 report total scores for the general population to be below 10, whereas scores for people with physical disabilities are closer to 30. Interviewer-administered, self-administered, and proxy versions are available in a short (12-item) and long (36-item) format in various languages on the WHO website. This study used the 36item WHODAS 2.0 in both French and English. WHODAS 2.0 scores were calculated using an item response theoryebased scoring and a simple approach to missing data.12 In addition, the survey included questions on respondents’ age, sex, health problem, and/or cause of disability, and assistive devices used. On the basis of their measures of self-reported health problem and/or cause of disability, participants were considered belonging to 1 of the 4 groups: (1) health problems due to an amputation (upper and/or lower limbs); (2) stroke; (3) SCI; and (4) other. “Other” included a range of other health problems such as broken bones, muscle weakness, and missing or unclear responses.
Procedures During phase 1 of the study, researchers with Team Canada Healing Hands visited Haiti from November 9 to 13, 2009. All 2009 surveys were conducted at the Kay Kapab Clinic, a Team Canada Healing Hands outpatient rehabilitation clinic located in Port-au-Prince. Individuals attending Team Canada Healing Hands clinics during this time period were potentially referred from other hospitals, were physician referrals from community practice, or simply attended the clinic because of word-of-mouth publicity. Individuals with typical health problems seen in Team Canada Healing Hands clinics included people who had a stroke or presented with amputations or musculoskeletal injuries. Phase 2 (after the earthquake), a second administration of the WHODAS 2.0, was conducted at the Kay Kapab Clinic, other Team Canada Healing Hands partner sites in Port-au-Prince established in response to the earthquake, and a partner site in the Cap-Haitian region between June 5 and July 9, 2012. Individuals were referred through the same pathways as in 2009, except referrals from nongovernmental organizations providing health services after the earthquake. Services provided during both visits included rehabilitation assessment and recommendations that involved services such as physiotherapy and provision of assistive devices including prosthetics, orthotics, and wheelchairs. All interviews were administered by members of Team Canada Healing Hands and a translator or by Team Canada Healing Hands staff. Team Canada Healing Hands staff members assisting with the administration of the survey were trained by research team members in the research protocol for approaching and recruiting potential participants and in the administration of the survey, including the WHODAS 2.0 questionnaire. WHODAS 2.0 training materials were reviewed by research team members along with Team Canada Healing Hands staff.12,19 Team Canada Healing Hands staff observed research team members administering initial surveys followed by administering the survey themselves to the participants, while research team members providing any needed support. In 2009, the English or Canadian French self-administered version of the WHODAS 2.0 was used.20-22 Owing to issues with literacy, research team members used the self-administered version in an interview style, reading the questions to participants in French or Haitian Creole. Based on the 2009 pilot experience, the interviewer-administered version of the WHODAS
K. Parker et al 2.0 was used in 2012.12 In addition to the demographic information obtained after the earthquake, 1 question was added to the survey to determine whether the participant’s health problems were due to the earthquake. Completed surveys were kept in a secure location in Haiti within a facility secured by Team Canada Healing Hands. After the completion of the study visit, all surveys were returned to Nova Scotia Rehabilitation Centre and results were entered into an electronic database.
Statistical analysis Statistical analyses were performed using SPSS version 20 (2011).a Descriptive statistics (cross tabulations, means SDs, medians, ranges) were performed on all data. A floor or ceiling effect was considered present if >15% of the participants scored 0 or 100, respectively, on domains.23 Data normality was determined using the Shapiro-Wilk test, and if assumptions were not met, nonparametric statistics were used. Chi-square tests were used to examine differences in the proportion of male and female participants, health problems, or those working or in school before and after the earthquake. To investigate the responsiveness of the WHODAS 2.0 to the impact of a natural disaster, pre- and post- earthquake measures were compared. Independent t tests (Mann-Whitney U, P.007) were used to compare ages and WHODAS 2.0 total and domain scores between pre- and post- earthquake groups. Responsiveness of the WHODAS 2.0 was explored through the calculation of effect size. A 1-way analysis of variance was used to investigate differences in WHODAS 2.0 total scores based on self-reported health problem before and after the earthquake (Kruskal-Wallis). Within each self-reported health problem group, differences in WHODAS 2.0 total scores before and after the earthquake were determined (Mann-Whitney U, P.017). Bonferroni corrections were applied to reduce type I error in interpreting the data. Unless otherwise noted, the level of statistical significance was defined as P.05.
Results A total of 72 surveys from the November 2009 pre-earthquake visit and 122 from the June 2012 post-earthquake visit were completed. Thirty-two surveys were incomplete because of missing WHODAS 2.0 items: 8 before the earthquake and 24 after the earthquake. The pilot implementation of the WHODAS 2.0 before the earthquake indicated that Team Canada Healing Hands staff was willing to help recruit participants and administer the questionnaire. The local clinic community and attending patients were receptive to participation. Some issues with regard to wanting payment for participation were encountered in the first reported pilot implementation, but this was not seen after the earthquake. However, after the earthquake, some participants struggled emotionally with some of the questions relating to the participation domain. Specifically this included the following questions: 6.3 “How much of a problem did you have living with dignity because of the attitudes and actions of others?” 6.4 “How much time did you spend on your health condition, or its consequences?” and 6.5 “How much have you been emotionally affected by your health condition?” A summary of population descriptors is given in table 1. There were no significant differences between respondents before and after the earthquake with respect to self-reported age or sex. www.archives-pmr.org
Disabilities in Haiti Table 1
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Population descriptors
Descriptor Sex Male Missing Age (y) Mean SD Median Range Missing People working or in school Self-reported health problem Amputation Stroke SCI Other Assistive devices used Prosthetics Orthotics Cane or crutch Walker Wheelchair
Pre-Earthquake: November 9e13, 2009 (nZ72)
Post-Earthquake: June 5eJuly 9, 2012 (nZ122)
35 (48.6) 4 (5.6)
51 (41.8) 0 (0.0)
47.318.4 49.5 18e91 0 (0.0) 59 (81.9)
48.817.1 51.0 16e80 0 (0.0) 31 (25.4)
19 28 0 25
(26.4) (38.9) (0.0) (34.7)
14 46 20 42
(11.5) (37.7) (16.4) (34.4)
3 3 37 3 9
(4.2) (4.2) (51.4) (4.2) (12.5)
10 7 36 10 42
(8.2) (5.7) (29.5) (8.2) (34.4)
NOTE. Values are n (% within visit) or as otherwise indicated.
Significant differences were noted in the number of individuals who indicated that they were working or in school in 2009 (81.9%) as compared with those who indicated that they were working or in school in 2012 (25.4%). Generally, main selfreported health problems were the same between visits, with the exception of 16.4% of the study population in 2012 having an SCI
compared to none reported in the 2009 study population. Of those surveyed in 2012, 31 (25.4%) identified having their health problem before the earthquake, 25 (20.5%) indicated their health problem was due to the earthquake, and 2 (1.6%) had missing or unclear responses. Figure 1 provides the WHODAS 2.0 total and domain scores. There was a median increase (6.6 points) in disability scores after the earthquake (Mann-Whitney U, PZ.055) with a moderate effect size of .35. Table 2 provides missing data, floor and ceiling counts for WHODAS 2.0 domain scores, and individual questions. No participant had a WHODAS 2.0 total score of 0, indicating no difficulty due to their health condition. Similarly, no participant had a WHODAS 2.0 total score of 100. There were missing WHODAS 2.0 data for 11% of the sample before the earthquake and for 20% of the sample after the earthquake. The domain with the most missing data before the earthquake was getting along with people, whereas after the earthquake the increase in missing data was due to the life activities domain, with 20% of the postearthquake sample not answering any questions in the life activities domain. Of those not answering any of the questions in the life activities domain after the earthquake, half were people with SCI. Domain scores that significantly increased after the earthquake were related to mobility, life activities, and participation domains. Floor effects were present before and after the earthquake for understanding and communicating and getting along with people domains. Floor effects that were present only before the earthquake were for getting around and self-care domains. Ceiling effects were noted with 15.3% before the earthquake and 22.1% after the earthquake, indicating extreme difficulty in the life activities domain. WHODAS 2.0 scores did not differ significantly between health problem groups after the earthquake (fig 2). WHODAS 2.0 scores were significantly different between health problem groups before the earthquake (Kruskal-Wallis, PZ.023), with the greatest differences noted between individuals with amputations and those
Fig 1 Median WHODAS 2.0 total and domain scores. )Post-earthquake values were significantly different from pre-earthquake values (P<.007). The possible range for WHODAS 2.0 total and domain scores was 0 to 100.
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Table 2
Floor, ceiling, and missing data for WHODAS 2.0 domain scores and individual questions Pre-Earthquake
Post-Earthquake
Floor
Ceiling
Missing
Floor
Ceiling
Missing
1: Understanding and communicating 1.1 Concentrating on doing something for ten minutes? 1.2 Remembering to do important things? 1.3 Analysing and finding solutions to problems in day-to-day life? 1.4 Learning a new task, for example, learning how to get to a new place? 1.5 Generally understanding what people say? 1.6 Starting and maintaining a conversation? 2: Getting around 2.1 Standing for long periods such as 30 minutes? 2.2 Standing up from sitting down? 2.3 Moving around inside your home? 2.4 Getting out of your home? 2.5 Walking a long distance such as a kilometre [or equivalent]? 3: Self-care 3.1 Washing your whole body? 3.2 Getting dressed? 3.3 Eating? 3.4 Staying by yourself for a few days? 4: Getting along with people 4.1 Dealing with people you do not know? 4.2 Maintaining a friendship? 4.3 Getting along with people who are close to you? 4.4 Making new friends? 4.5 Sexual activities? 5(1): Life activities 5.1 Taking care of your household responsibilities? 5.2 Doing most important household tasks well? 5.3 Getting all the household work done that you needed to do? 5.4 Getting your household work done as quickly as needed? 5(2): Life activities for those in work/school 5.5 Your day-to-day work/school? 5.6 Doing your most important work/school tasks well? 5.7 Getting all the work done that you need to do? 5.8 Getting your work done as quickly as needed? 6: Participation in society 6.1 How much of a problem did you have in joining in community activities (for example, festivities, religious or other activities) in the same way as anyone else can?
22 29 29 27 28 30 31 15 22 24 25 23 19 14 21 22 34 21 20 34 35 38 42 48 9 24 23 20 10 17 25 26 25 23 0 32
0 6 3 4 4 0 0 3 15 10 7 10 27 3 21 13 3 20 0 1 1 1 0 8 11 17 18 17 20 19 24 23 21 21 0 16
3 2 1 2 3 4 2 1 3 3 3 3 1 1 3 1 1 2 5 3 5 2 4 9 2 2 3 2 2 0 0 1 0 1 1 2
20 59 53 40 76 99 78 8 19 25 36 19 17 14 34 34 78 26 35 76 98 69 89 82 1 6 9 8 4 1 4 8 10 1 0 13
0 2 1 8 3 0 0 13 52 42 36 29 59 5 39 13 8 70 0 14 6 10 3 13 27 46 51 40 62 1 7 1 4 3 1 64
3 3 3 3 3 3 3 3 3 3 3 3 6 3 3 3 3 14 3 3 3 3 3 8 25 24 24 26 25 0 0 0 0 0 5 3
(30.6) (40.3) (40.3) (37.5) (38.9) (41.7) (43.1) (20.8) (30.5) (33.3) (34.7) (31.9) (26.4) (19.4) (29.2) (30.5) (47.2) (29.2) (27.8) (47.2) (48.6) (52.8) (58.3) (66.7) (12.5) (33.3) (31.9) (27.8) (13.9) (28.8) (42.4) (44.1) (42.4) (39.0) (0.0) (44.4)
(0.0) (8.3) (4.2) (5.6) (5.6) (0.0) (0.0) (4.2) (20.8) (13.9) (9.7) (13.9) (37.5) (4.2) (29.2) (18.0) (4.2) (27.8) (0.0) (1.4) (1.4) (1.4) (0.0) (11.1) (15.3) (23.6) (25.0) (23.6) (27.8) (32.2) (40.7) (39.0) (35.6) (35.6) (0.0) (22.2)
(4.2) (2.8) (1.4) (2.8) (4.2) (5.6) (2.8) (1.4) (4.2) (4.2) (4.2) (4.2) (1.4) (1.4) (4.2) (1.4) (1.4) (2.8) (6.9) (4.2) (6.9) (2.8) (5.6) (12.5) (2.8) (2.8) (4.2) (2.8) (2.8) (0.0) (0.0) (1.7) (0.0) (1.7) (1.4) (2.8)
(16.4) (48.4) (43.4) (32.8) (62.3) (81.1) (63.9) (6.6) (15.6) (20.5) (29.5) (15.6) (13.9) (11.5) (27.9) (27.9) (63.9) (21.3) (28.7) (62.3) (80.3) (56.5) (73.0) (67.2) (0.8) (4.9) (7.4) (6.5) (3.3) (3.2) (12.9) (25.8) (32.2) (3.2) (0.0) (10.6)
(0.0) (1.6) (0.8) (6.6) (2.4) (0.0) (0.0) (10.7) (42.6) (34.4) (29.5) (23.8) (48.4) (4.1) (32.0) (10.6) (6.5) (59.0) (0.0) (11.5) (4.9) (8.2) (2.4) (10.6) (22.1) (37.7) (41.8) (32.8) (50.8) (3.2) (22.6) (3.2) (12.9) (9.7) (0.8) (52.4)
(2.5) (2.5) (2.5) (2.5) (2.5) (2.5) (2.5) (2.5) (2.5) (2.5) (2.5) (2.5) (4.9) (2.5) (2.5) (2.5) (2.5) (11.5) (2.5) (2.5) (2.5) (2.5) (2.5) (6.6) (20.5) (19.7) (19.7) (21.3) (20.5) (0.0) (0.0) (0.0) (0.0) (0.0) (4.1) (2.5)
(continued on next page)
K. Parker et al
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Domain Question
3 (2.5)
24 (19.7)
77 (63.1)
0 (0.0)
Discussion
NOTE. Values are n (% within visit).
8 (11.1) 0 (0.0) 0 (0.0)
1 (1.4) 22 (30.5) 25 (34.7)
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who had a stroke. No significant differences were found on examining WHODAS 2.0 scores by health problem before and after the earthquake. The most notable difference found was in people with amputations who had a nonsignificant median increase of 15.1 in disability score after the earthquake.
0 (0.0)
6 (4.9) 45 (36.9) 22 (30.5) 16 (22.2)
1 (1.4)
6 (4.9)
5 (4.1) 81 (66.4) 48 (66.7) 12 (16.7)
1 (1.4)
6 (4.9)
3 (2.5) 41 (33.6) 30 (41.7) 10 (13.9)
2 (2.8)
4 (3.3)
1 (0.8) 31 (25.4) 34 (47.2) 0 (0.0)
2 (2.8)
6 (4.9)
3 (2.5) 26 (21.3) 10 (13.9) 40 (55.5)
4 (5.6)
4 (3.3)
5 (4.1)
43 (35.2)
Missing Ceiling Floor Ceiling
12 (16.7)
Floor
25 (34.7)
6.2 How much of a problem did you have because of barriers or hindrances in the world around you? 6.3 How much of a problem did you have living with dignity because of the attitudes and actions of others? 6.4 How much time did you spend on your health condition, or its consequences? 6.5 How much have you been emotionally affected by your health condition? 6.6 How much has your health been a drain on the financial resources of you or your family? 6.7 How much of a problem did your family have because of your health problems? 6.8 How much of a problem did you have in doing things by yourself for relaxation or pleasure? WHODAS 2.0 total score
Missing
11 (9.0)
39 (32.0)
1611
Domain Question
Pre-Earthquake Table 2 (continued )
2 (2.8)
Post-Earthquake
Disabilities in Haiti
The primary objective of this study was to describe the functioning and participation of individuals with disabilities attending rehabilitation clinics in Haiti through the pilot implementation of the WHODAS 2.0 questionnaire. A second objective of this study was to investigate whether individuals attending clinics reported an increased difficulty in functioning and participation since the 2010 earthquake. Overall WHODAS 2.0 scores of Haitians with disabilities attending Team Canada Healing Hands clinics were in the top 10th percentile of population normative data, which were 10% greater than published typical data for people with physical disabilities. This suggests that our surveyed population reports greater difficulty in functioning and participation both before and after the earthquake as compared to population normative data.12 Median WHODAS 2.0 scores after the earthquake were 6.6 points higher than those before the earthquake, with significantly more difficulties encountered in the mobility, life activities, and participation domains after the earthquake. Conducting the survey within Team Canada Healing Hands clinics is feasible as indicated by the willingness of Team Canada Healing Hands staff to assist with participant recruitment, survey administration, and the obtained completed surveys. The emotional response to some WHODAS 2.0 questions that was noted only after the earthquake likely reflects the impact of the earthquake on their emotional well-being; this finding was also supported by reports of an increase in demand for mental health support after the earthquake.8 Few studies have used the WHODAS 2.0 to measure the functioning of people with physical disabilities in limited resource environments or after natural disasters. A 2001 study of individuals with traumatic SCI living in Kabul and Herat, Afghanistan, found that the WHODAS 2.0 mean score of 55.7 placed them in the top 0.5% of the greatest reported difficulty in functioning and participation, indicating greater disability, as compared to population normative data.24 In our study, participants with SCI generally report similar levels of disability and function. In comparison, data from a more resourced setting based on individuals living with SCI had median WHODAS 2.0 scores ranging from 27 to 32, which were close to typical values obtained for people with physical disabilities. This lower disability score is likely a reflection of both the environment and the ability to adjust to the injury.17,18 In comparison, individuals with recent lower limb amputations in a resourced setting had 12-item WHODAS 2.0 scores placing them in the top 5th percentile for disability normative scores.25 Our sampled population with amputations reported much lower WHODAS 2.0 scores before the earthquake, indicating fewer difficulties encountered in functioning and participation. This discrepancy may be due to cultural differences in function and participation expectations. It is not clear whether a 6.6-point increase in WHODAS 2.0 score after the earthquake, with a moderate effect size of .38, is a meaningful change. To provide some context, WHODAS 2.0 effect sizes have ranged from .44 to 1.07 in studies investigating interventions in populations with back pain, schizophrenia, osteoarthritis, and alcohol dependence.12,13 The WHODAS 2.0 total
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Fig 2 Median WHODAS 2.0 scores by self-reported health diagnosis. No self-reported SCI was surveyed before the earthquake. The possible range for WHODAS 2.0 total scores was 0 to 100.
score has been shown to be able to distinguish between individuals with higher and lower impairment level SCIs, with disability score differences ranging from 6.6 to 13.6.17,18 The measured increase in WHODAS 2.0 disability score suggests that the earthquake had some impact on the reported disability level. The item response theoryebased scoring of the WHODAS 2.0 results in different weighting of some questionnaire items, which may have contributed to the lack of significant differences between visits. A likely result of the earthquake was the significant decrease in the percentage of the population working or in school because of the damage of the local infrastructure and reflected in the increased levels of difficulty in life activities and participation domains. This may have implications for the poverty experienced by people with disabilities in Haiti and subsequently reflected in increased disability scores. Changes in WHODAS 2.0 scores may also be a reflection of the difference in rehabilitation case mix seen in Team Canada Healing Hands clinics before and after the earthquake. Selfreported health problems were generally the same between visits. The exception was observed in 16.4% of the study population with SCI in 2012 as compared with 0% of the study population in 2009. Our study included 20 individuals with SCI, an estimated 7% of Haitians with SCI due to the earthquake. This is a population that was not typically seen in the rehabilitation setting before the earthquake. One possible reason for this is thought to be the result of low survival rates for people who initially survived severe SCIs, which is consistent with other underresourced settings. The international response to the 2010 earthquake resulted in an increase in survival for people with SCI.4 This population may be overrepresented because surveys were conducted 1 day at a clinic with a focus on SCI management, the Cap-Haitian region clinic. Individuals with amputations are likely underrepresented in the postearthquake study population. After the earthquake, the population
with amputations typically seen in Team Canada Healing Hands clinics were, at the time, being referred to a temporary physical rehabilitation center. This was a partner clinic, but one of many partner clinics surveyed after the earthquake in Port-au-Prince. Levels of disability and function remained essentially the same across health problems before and after the earthquake. The only group to indicate increased WHODAS 2.0 scores after the earthquake was individuals with amputations, which may be a reflection of different levels of amputation in the population surveyed before and after the earthquake. This, in addition to the inclusion of people with SCI who reported the second highest WHODAS 2.0 scores, may have influenced the overall increase in median WHODAS 2.0 score after the earthquake. The increased number of individuals with injuries, specifically people with SCI not previously seen before the earthquake, and the influx of aid after the earthquake have led to twice as many wheelchairs being used by the population sampled. This highlights the need to address the appropriate provision of wheelchairs and wheelchair skills training.26 The WHO has developed guidelines for wheelchair provision in less-resourced settings, and it has been recommended that these guidelines be implemented in Haiti.27 This also highlights a need to help advocate for greater inclusion of people with disabilities and to plan accordingly in the infrastructure rebuilding and health care service program delivery. It is interesting to note the increase of missing data in the postearthquake visit. This seems to be due to the difficulty in answering questions in the life activities domain after the earthquake. It may be due to the fact that many are still residing in temporary housing, so the concept of household tasks has changed and is not relevant to their current situation. This is also likely reflected in the increased ceiling effect in the life activities domain after the earthquake. This may be especially true for participants with SCI, half of which were unable to answer any questions in www.archives-pmr.org
Disabilities in Haiti this domain. Because of this, half the participants with SCI did not contribute to the WHODAS 2.0 total score, which may account for lack of significant increase in total disability score after the earthquake. This has important implications in the use of the WHODAS 2.0 in the assessment of catastrophic events. This may require reframing the concept of home and household tasks to reflect the new living situation. Another option would be to exclude the life activities domain, which has been done when using the WHODAS 2.0 in long-term care facilities where individuals do not have household tasks to perform.28 It is recommended that future studies using the WHODAS 2.0 after catastrophic events use a mixed methods approach and obtain qualitative perspectives as well.
1613 WHODAS 2.0 in limited resource settings. Moreover, this study highlights the limitation in activities and participation experienced by people with disabilities in Haiti before the earthquake and suggests that Team Canada Healing Hands and other nongovernmental organizations have an opportunity in partnership with the Haitian community to help advocate for greater inclusion of people with disabilities. Future work can include using WHODAS 2.0 to monitor the impact of rehabilitation service and advocacy initiatives in Haiti and similar locations.
Supplier a. IBM Corp.
Study limitations As this was the first reported pilot implementation of the WHODAS 2.0 in Haiti, there are several potential limitations. First, there should be caution in interpreting study results because the WHODAS 2.0 has not been validated specifically in Haiti, but has been evaluated in other low-income countries and shown to be culturally sensitive. We were unable to obtain a methodologically appropriate translation (panel of experts, forward and backward translation, and testing) of the survey into Haitian Creole, and subsequently French and English versions had to be used, relying on local Haitian research team members to provide Haitian Creole translation. Second, different WHODAS 2.0 instrument versions and training materials were used, which may account for some differences in the obtained results, although WHODAS 2.0 domain-specific questions remained the same between visits. Third, Team Canada Healing Hands clinics operate in minimally resourced conditions and local staff were used to recruit and conduct study interviews. Because of the impact of the 2010 earthquake, a structured study design was not feasible. Although we encouraged data collectors to capture information on the number of patients approached, it was not consistently recorded and subsequently we cannot calculate a formal response rate. Nor was a formal sampling frame available to indicate the total population with disabilities; thus, we cannot determine the representativeness of our convenience sample. Despite this limitation, the study used local clinic staff to administer the survey, which was highly regarded by the local clinic community and attending patients. The post-earthquake sample was drawn from a larger geographical area and occurred over a greater duration of time, which may have biased the sample obtained. Individuals attending Team Canada Healing Hands clinics before and after the earthquake were primarily from an urban, upper-middle socioeconomic population, as these were the individuals who had the ability (transportation) to access services. Subsequently, rural and lower-income populations were underrepresented in this study.
Conclusions To our knowledge, this is the first study to explore the experience of people with disabilities in Haiti, as measured using the WHODAS 2.0. The increase in WHODAS 2.0 score related to mobility, life activities, and participation domains suggests that the 2010 earthquake had a negative impact on functioning, while also providing additional information on the responsiveness of the
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Keywords Activities of daily living; Earthquakes; Haiti; Outcome assessment (health care); Rehabilitation; Social participation
Corresponding author James Adderson, CP, Assistive Technology, Capital District Health Authority, Nova Scotia Rehabilitation Centre Site, 1341 Summer St, Halifax, NS, Canada B3H 4K4. E-mail address: [email protected].
Acknowledgments We thank Riche Zamor, PhD, Executive Director of Healing Hands for Haiti, for supporting the participation of local Haitian staff in this project and Mary Halpine, MD, for providing research site lead in 2012. We also thank Yasmine Edouard, Lesly Danger, Herold Lojuste, and Louis-Charles Gimps, for assisting in the administration of the survey in Haiti.
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