- Email: [email protected]
Barriers to Wheelchair Use in the Winter
Archives of Physical Medicine and Rehabilitation journal homepage: www.archives-pmr.org Archives of Physical Medicine and Rehabilitation 2015;-:-------
ORIGINAL RESEARCH
Barriers to Wheelchair Use in the Winter Jacquie D. Ripat, PhD,a Cara L. Brown, MSc,a Karen D. Ethans, MD, FRCPCb From the aDepartment of Occupational Therapy, College of Rehabilitation Sciences, Faculty of Health Sciences, University of Manitoba, Winnipeg, Manitoba; and bSection of Physical Medicine and Rehabilitation, Department of Medicine, University of Manitoba, Winnipeg, Manitoba, Canada.
Abstract Objectives: To test the hypothesis that challenges to community participation posed by winter weather are greater for individuals who use scooters, manual and power wheelchairs (wheeled mobility devices [WMDs]) than for the general ambulatory population, and to determine what WMD users identify as the most salient environmental barriers to community participation during the winter. Design: Cross-sectional survey organized around 5 environmental domains: technological, natural, physical, social/attitudinal, and policy. Setting: Urban community in Canada. Participants: Convenience sample of WMD users or their proxy (NZ99). Interventions: Not applicable. Main Outcome Measures: Not applicable. Results: Forty-two percent identified reduced outing frequency in winter months, associated with increased age (c3Z6.4, PZ.04), lack of access to family/friends for transportation (c2Z8.1, PZ.04), and primary type of WMD used in the winter (scooter c2Z8.8, PZ.003). Most reported tires/casters becoming stuck in the snow (95%) or slipping on the ice (91%), difficulty ascending inclines/ramps (92%), and cold hands while using controls or pushing rims (85%); fewer identified frozen wheelchair/scooter batteries, seat cushions/backrests, or electronics. Sidewalks/ roads were reported to be problematic by 99%. Eighty percent reported needing additional help in the winter. Limited community access in winter led to a sense of loneliness/isolation, and fear/anxiety related to safety. Respondents identified policies that limited participation during winter. Conclusions: People who use WMDs decrease their community participation in cold weather because of multiple environmental barriers. Clinicians, researchers, and policymakers can take a multidimensional approach to mitigate these barriers in order to enhance community participation by WMD users in winter. Archives of Physical Medicine and Rehabilitation 2015;-:------ª 2015 by the American Congress of Rehabilitation Medicine
Participation refers to the ability of a person to be involved in any life situation,1 and “occurs at the intersection of what the person can do, wants to do, has the opportunity or the affordance to do, and is not prevented from doing by the world in which the person lives and seeks to participate.”2(pS30) Participating in self-defined, meaningful activities can enhance an individual’s sense of competence and well-being, both of which are essential for healthy emotional, psychological, and skills-based development.3 Community participation, which encompasses accessing community spaces, activities, and social relationships,4 is more closely
Presented in part to the Canadian Association of Occupational Therapists, May 30 to June 1, 2013, Victoria, British Columbia, Canada. Disclosures: none.
related to life satisfaction than illness or impairment for people with disabilities.5 To develop strategies to maximize community participation for people with disabilities, there is a need to explore the barriers to participation. In Canada, 1.2 million people need or use mobility aids to participate in their community and society.6 Wheeled mobility devices (WMDs), such as wheelchairs, are 1 category of mobility aids. While more homes, schools, and community-based facilities are incorporating accessibility features, users of WMDs continue to experience barriers to their community participation.4,7-10 Furthermore, the existence of snow, ice, and cold temperatures characteristic of the winter months in some locations create additional challenges. Although community participation issues posed by winter are genuine concerns for all residents, they are compounded for users of WMDs.11,12
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Cited barriers to WMD use in the winter include cold temperatures,13,14 ice- and snow-covered roads and sidewalks,15-19 frozen wheelchair system components,14 reduced wheelchair battery life,16,18 decreased manual dexterity and strength for operating controls,14,19 and risk of thermal injury.14,16 However, there is a lack of research exploring the details and processes of winter weather barriers or of service and policy-related barriers. Since accessibility issues are multifaceted, it is important to explore winter weather barriers inherent in WMDs, and in the built, social, and policy environments in order to identify areas that are amenable to change. A biopsychosocial model of disability, the International Classification of Functioning, Disability and Health,1 guided this research. In particular, exploring the role of the environment in restricting societal participation was foundational.1,20 The research question was as follows: What do people who use WMDs identify as the most salient environmental barriers to community participation in the winter? The findings of this research are intended to identify winter weather issues of the greatest impact on WMD users’ community participation that can inform future research.
Methods Design The researchers developed a survey (available from the corresponding author), based on a literature review of WMD winter/cold weather issues, and issues generated by the researchers (health care professionals/researchers with experience working with WMD users). Closed-ended (fixed choice and Likert scale) and open-ended questions were developed and organized around the following 5 environmental domains identified in the International Classification of Functioning, Disability and Health20: technological, natural, physical, social/attitudinal, and policy (appendix 1). Seven people participated in a pilot study of utility and content validity, and the survey was subsequently modified to add questions, improve wording clarity, and increase response ease. The survey was administered online using SurveyMonkey,a with an option for telephone or mail-in administration. A university-based research ethics board approved the study; all participants provided informed consent.
Sample The study was conducted in Manitoba, Canada, where Winnipeg (the provincial capital) experiences average winter temperatures well below 0 C and a yearly average snowfall of 113.7cm.21 While the total provincial population is 1.2 million people,22 the actual number of WMD users is unknown. Recruitment consisted of circulating a poster advertising the study to clinics and organizations that provide services to WMD users, and organizations shared study information via their established communication mechanisms (eg, e-mail, newsletter). All survey respondents were a part- or full-time WMD user (wheelchair or scooter), or a caregiver of the WMD user (as proxy respondents), Manitoba residents, and English speaking. Long-term care
List of abbreviations: WMD wheeled mobility device
facility residents were excluded since we anticipated their community participation experience to be unique. The survey was open over the span of 2 winters (December 2011 through May 2012, and January through May 2013).
Data analysis Survey data were imported into SPSS version 22b for descriptive analysis (frequencies) and analysis of the hypothesis that maintained outing frequency would be associated with participants who were younger, had access to private transportation, used a power wheelchair, lived with others, and reported a longer duration of wheelchair use. Frequency of outing data were dichotomized into “frequent” (defined as 3e6 times/wk and everyday) or “infrequent” (<3 times/wk) outings. All demographic data were categorical. The chi-square statistic (P<.05, 2-tailed) was used to determine the association of the change in frequency of outing with the demographic variables. Verbatim responses to the open-ended questions were imported into a Word document.c Directed content analysis23 was conducted by the first author and a research assistant whereby written responses were coded with a shorthand phrase that captured the statement intent, and similar codes were grouped into overarching categories within each of the 5 environmental domains. Confirmation of category assignment was conducted by the second author.
Results Ninety-nine respondents completed the survey (1 responded through mail-in); not all respondents answered all the questions. Demographic and social characteristics of survey respondents are shown in table 1. Analysis of the responses to the open-ended questions yielded additional explanatory findings within each environmental domain and are discussed in the respective sections below. Respondents indicated the frequency with which they used their WMDs to go outdoors/into the community in the summer and in the winter (fig 1). When comparing summer and winter outing frequency, 42.4% indicated reducing their outing frequency in winter months.
Technology/equipment Respondents were asked to identify winter-related technology/ equipment challenges. Most reported that their tires/casters became stuck in the snow (95.1%; nZ82 responses). Difficulty ascending inclines/ramps (91.8%; nZ85 responses), and tires or casters slipping on the ice (90.9%; nZ77 responses) were frequently reported. Respondents reported cold hands while using controls or pushing rims (85.3%; nZ75 responses). Fewer respondents identified frozen wheelchair/scooter batteries (38.6% of 44 responses), frozen seat cushions/backrests (30.9% of 68 responses), or frozen electronics (23.2% of 43 responses) as problematic. Reduced outing frequency was associated with scooter use (c2Z8.8, PZ.003), whereas no change in frequency of outings was reported by those who identified they primarily used a power wheelchair (c2Z3.7, PZ.05) or manual wheelchair (c2Z.13, PZ.9) in the winter. While decreased outing frequency was associated with increased age (c2Z6.4, PZ.04), it was not associated with duration of WMD use (c2Z2.8, PZ.4). The detrimental effect of cold temperature was summed up by 1 power wheelchair user: “Too cold to even go out due to www.archives-pmr.org
Barriers to wheelchair use in the winter Table 1
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Demographic and social characteristics of participants
Characteristics Residence (nZ98) Winnipeg Elsewhere in Manitoba Respondents (nZ99) WMD user Family member/caregiver Primary WMD type used in winter months (nZ92) Manual wheelchair Power wheelchair Scooter Other (eg, wheeled walker) Duration of WMD use (nZ97) <1y 1e5y 6e10y >10y Age of WMD user (nZ95) <20y 20e50y 51y Transportation (nZ93) Public transportation only Private transportation only Both Cohabitant status (nZ89) Lives alone Lives with others
Percentage 80.6 19.4 75.8 24.2 40.2 38.0 16.3 5.4 4.1 28.9 22.7 44.3 8.4 41.1 50.5
the early or late winter when snow is not as heavy, it is exceedingly difficult to move about.” However, each of the other 3 areas was problematic for more than 40% of respondents. In the home, participants identified issues with entrance/egress. For example, 1 power wheelchair user reported not going out at all throughout the winter, stating that “[I] have a motorized lift to access house. The lift does not operate well (if at all) in temperatures below zero degrees.” Public transportation access and use was impacted by weather. One caregiver indicated, “We live a very long way from the bus, so if we can’t get a ride after a snowfall before the plows come, we are basically trapped until the city gets around to plowing our neighborhood.” However, type of transportation used (private only, public only, or both) was not associated with reduced winter outing frequency (c2Z1.40, PZ.50). When able to get out of their homes, respondents shared the community challenges they faceddfor example, driving one’s power wheelchair on the streets because of unplowed sidewalks. Respondents reported slippery entrances to community businesses, and powered doorways that became compacted with snow, limiting their opening. Accessible spaces became temporarily inaccessible. One respondent described the problem of “wheelchair parking spots ‘disappearing’ when ice and snow cover the markings on the ground.”
Social/attitudinal environment 26.9 26.9 46.2 42.7 57.3
NOTE. n refers to number of respondents answering each question.
the metal of the chair getting cold and then radiating up through the person in the chair.”
Physical/natural environment Respondents identified problems they experienced in any of 4 areas of home and community environments during the winter. Almost all identified issues with sidewalks, roads, or both (98.9%: 89 responses). For example, 1 manual wheelchair respondent reported that “sidewalks and streets are impassable most of the winter, and even in
Seventy-nine people responded to a question concerning the need for additional help in the winter as compared with the summer; 88% reported needing additional assistance. Among those who responded affirmatively, 67.5% reported needing additional help with transportation, and correspondingly, maintained winter outing frequency was found to be associated with access to family/friends for transportation (c2Z8.1, PZ.04). Fifty percent reported requiring additional social/emotional support, 43.8% desired additional home maintenance support (such as snow clearing), and 36.3% identified needing assistance to access their home. As 1 power wheelchair user wrote, “As per the snow, I would need someone to push me because there get to be big ruts on the sidewalks or soft snow and slush. I have been stuck before, and am afraid to go very far by myself in case it happens again.” Respondents were asked whether they received the needed assistance in the winter. Seventy people responded; while 42.9% reported they received additional assistance (primarily from family members), most (57.1%) did not receive needed assistance. Others reported additional financial burdens. For example, an older adult scooter user shared, “I always pay a lot of money to have snow removed and groceries delivered.”
Policy environment
Fig 1 Cumulative seasonal frequency WMD is used to go outside (summer nZ94; winter nZ93).
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When asked about responsibility for addressing winter-related issues, respondents suggested that responsibility for the issues should be shared among stakeholders. Government officials and policymakers were identified by 87% of respondents as holding responsibility, and 79% attributed winter-related issues to public transportation policy. As 1 manual wheelchair user stated, “[Public accessible transit] can refuse to pick you up due to too much snow. This makes it difficult when you have to go to work.” Wheelchair vendors and manufacturers, and health care providers were each identified by more than 50% of respondents as having a role to play in addressing winter-related issues by developing and/ or recommending winter-appropriate WMDs, and joining WMD users in advocacy efforts toward improved policy.
4 However, while respondents viewed winter issues to be a shared responsibility, only 40% had discussed their winter-related issues with government officials, 44% had discussed issues with their health care providers, and one-third or fewer respondents reported having discussions with other stakeholders.
Emotional consequences of limited community participation Respondents self-identified added social and emotional challenges faced during winter in their open-ended responses. For instance, 1 manual wheelchair user who reported going out only 1 to 3 times per month in the winter wrote, “The pressure of asking for help is not a good feeling. As a once very independent person, I feel useless and EXTREMELY frustrated.” The result of an inability to access one’s community in the winter led to a sense of loneliness and isolation for some people, as shared by 1 older adult manual wheelchair user: “I’m fortunate that I do stitch work and have a TV and my budgies to help me get by, but it still gets very lonely especially when I’m not able to get out in the winter.” Fear and anxiety were reported, related to anticipation of compromised safety. For example, 1 young adult manual wheelchair user stated, “I have been dumped out of my wheelchair a few times while someone tries to push me up and through snow piles and over lumpy sidewalks/roads. It’s pretty freaky to get dumped, and also cold and sometimes painful.”
Discussion This research supports anecdotal knowledge that winter weather conditions impact participation levels for WMD users. While it could be argued that participation patterns change for the entire population in the winter, our results confirm a large variation in participation between seasons in WMD users, as 42% of the sample changed their outing frequency from 3 to 7 times per week to less than 3 times per week. The magnitude of this change is disconcerting, considering the evidence that links activity, socialization, and mental and physical health.24,25 Associations between outing frequency and demographic variables provide insight into the barriers to winter community participation. It was not surprising that age was associated with reduced frequency of outings, since a variety of factors related to aging could impact winter outing frequency. In a study26 of community-dwelling older adults with and without mobility impairments, only 6% of those with mobility limitations reported going out when it was icy (as compared with approximately half of those without reported mobility limitations). Furthermore, in the same study, only 12% of older adults with mobility limitations reported going out when it was dark (as would be the case for a greater proportion of the day during the winter). The association between scooter use and reduced winter outings may be because scooters cannot be used on accessible public transportation. Thus if sidewalks and roads are not clear, scooters cannot be used for community access. Conversely, maintaining winter outing frequency for power wheelchair users may be attributed to the ability to navigate sidewalk surfaces in conditions when some snow and ice exists. Several variables that were expected to influence outing frequency change were not found to be significant. We expected outing frequency to remain stable if someone lived in a residence where snow-clearing assistance was available, but this was not the case. We anticipated that those with a longer duration of WMD use would feel more competent or have acquired technologies suited to
J.D. Ripat et al winter weather, but this variable did not impact outing frequency. Finally, as evidence cites lack of transportation as one of the largest barriers to community access in all seasons,27 we expected that those with access to both private and public transportation would maintain their outing frequency; instead it was availability of family and friends to assist with transportation that impacted outing frequency. A possible explanation is that family and friends are needed to facilitate vehicle access in the winter (such as shoveling walks or ramps, or both). The most frequently cited technological issues were slipping on ice and getting stuck, supporting calls for future research on improving tire and caster traction.19 Alternatively, travel surfaces could be targeteddfor example, by improving ramp traction or installing heated sidewalks. Another focus could be designing wheelchair drive controls for ease of access with mitts or gloves, or exploring use of wheelchair parts that minimize cold conduction. Issues with snow-clearing practices and transportation were prominent themes. This finding suggests that communities need to take a multipronged approach to improve snow-clearing practices; existing services for clearing private entrances and walks should be reviewed for affordability and availability, and priorities for clearing municipal sidewalks and roads in the winter should be discussed. In addition, the results of this study underscore the need for accessible transportation policy and practice evaluation, with specific attention to winter usage. Half of the respondents did not receive the additional assistance they required in the winter. Similarly, other studies13,15,28,29 with individuals with disabilities have emphasized the physical and social isolation that occurs in winter months. Thus while there is a need to evaluate policies and services to ensure availability of adequate assistance, there are times when going outside in the winter may not be possible or desirable. Research into interventions to mitigate social isolation, such as Internet or phone support networks, is indicated. Respondents saw improving winter community access as a shared responsibility among stakeholders, but most had not advocated for their needs. Trialing strategies to enhance user groups’ abilities to be empowered and unified in their advocacy efforts through the use of approaches such as participatory action research may be warranted. Despite the extent and magnitude of issues experienced by WMD users, with the exception of a few research reports,19,29,30 relatively little attention has been paid to examining solutions to improving community participation for WMD users in the winter. While these study findings are limited to a specific population, the findings can provide a foundation for future research for those who work with or provide services to WMD users in countries in temperate and frigid climates.
Study limitations Limitations include a low response rate in relation to the sampling frame, defined as all WMD users in Manitoba. The aim of the survey was to glean exploratory descriptive information, and thus while we addressed content validity, we did not address test-retest reliability, and the variability in question response structure was not conducive to testing for internal consistency. The responses to the open-ended questions may be useful for guiding future survey development appropriate for psychometric testing. We assumed that a decrease from 3 or more outings to less than 3 times a week in the winter would signal an important decrease in outing frequency, and would be different than a population without mobility
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Barriers to wheelchair use in the winter
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issues. The limited data on seasonal change in outing frequency for the general population make it difficult to determine how this pattern differs for people with mobility issues. All data collected were anonymous and were open to anyone to respond; thus we were unable to discern whether a single respondent entered data on more than 1 occasion. We sought to hear a broad range of WMD user experiences, and it may be that the experience of partor full-time WMD users differs. Despite these limitations, the results of this survey provide a useful first step in identifying the type and frequency of winter issues faced by WMD users from a broad environmental perspective.
Suppliers
Conclusions
Corresponding author
People who use WMDs decrease their community participation considerably in cold weather; for many this results in isolation and feelings of dependency. Specific issues related to the interface of WMDs and winter were identified. While cold weather is not modifiable, many environmental factors relevant to WMD use and users are amenable to change. In geographic areas where snow, ice, and cold temperatures span from several months to the greater part of a year, pursuing actions to ameliorate the effects of cold weather on community participation is worthwhile.
a. SurveyMonkey; SurveyMonkey, Inc. b. SPSS version 22; IBM Corp. c. Word document; Microsoft Corp.
Keywords Cold temperature; Social participation; Rehabilitation; Snow; Wheelchairs
Jacquie D. Ripat, PhD, Department of Occupational Therapy, College of Rehabilitation Sciences, Faculty of Health Sciences, University of Manitoba, R131-771 McDermot Ave, Winnipeg, Manitoba R3E 0T6. E-mail address: [email protected].
Acknowledgments We thank Shannon Keys, MA, and Erin Fonseca, MOT, for their role as research assistants in this study.
Appendix 1 Sample Survey Questions Question 1.4 How long have you/has your family member been a wheeled mobility device user?
Less than 1 year 1e5 years 6e10 years More than 10 years
Question 1.7 On average, how often do you/does your family member use the wheeled mobility device to go outside during the winter months? (November 1eApril 1)
Every day Between 3e6 times per week 1e2 times per week 1e3 times per month For emergencies only Other (please specify) _________________________
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Question 2.10 How often do you/does your family member face the following issues when using a wheeled mobility device in the winter?
Issues Faced When Using a Wheeled Mobility Device in Winter
Frequently (More Than Once a Month)
Occasionally (Once a Month or Less)
Never
Not Applicable
Frozen wheelchair/scooter battery that dies too quickly Electronic components freeze Tires/casters get stuck in snow Tires/casters slip on ice Unable to get up inclines/ramps due to ice or snow Seat cushion or backrest freezes Cold hands from using controls or hand rims
Question 4.2 In which areas do you feel you/does your family member need(s) additional help with in the winter (select all that apply)?
Access to the home Social/emotional support Transportation Home maintenance Other (please specify) ________________________ Not applicable
Question 4.3 If you indicated in 4.2 that there are areas which require more assistance in winter months, please describe the type of help required.
References 1. World Health Organization. International Classification of Functioning, Disability, and Health 2001. Available at: http://apps.who.int/ classifications/icfbrowser/. Accessed April 15, 2014. 2. Mallinson T, Hammel J. Measurement of participation: intersecting person, task, and environment. Arch Phys Med Rehabil 2010;91:S29-33. 3. Law M. Participation in the occupations of everyday life [distinguished scholar lecture]. Am J Occup Ther 2002;56:640-9. 4. Carpenter C, Forwell SJ, Jongbloed LE, Backman CL. Community participation after spinal cord injury. Arch Phys Med Rehabil 2007;88: 427-33. 5. Whiteneck G, Meade MA, Dijkers M, Tate DG, Bushnick T, Forchheimer MB. Environmental factors and their role in participation and life satisfaction after spinal cord injury. Arch Phys Med Rehabil 2004;85:1793-803. 6. Statistics Canada. Prevalence of disability in Canada 2006: analytical report. Ottawa: Statistics Canada; 2008. Catalogue No. 89-628-X no. 005. 7. Brandt A, Iwarsson S, Stahle A. Older people’s use of powered wheelchairs for activity and participation. J Rehabil Med 2004;36:70-7. 8. Chaves E, Boninger M, Cooper R, Fitzgerald S, Gray D, Cooper R. Assessing the influence of wheelchair technology on perception of participation in spinal cord injury. Arch Phys Med Rehabil 2004;85: 1854-8. 9. Larsson Lund M, Nordlund A, Nyga˚rd L, Lexell J, Bernspa˚ng B. Perceptions of participation and predictors of perceived problems with participation in persons with spinal cord injury. J Rehabil Med 2005;37:3-8. 10. Lysack C, Komanecky M, Kabel A, Cross K, Neufeld S. Environmental factors and their role in community integration after spinal cord injury. Can J Occup Ther 2007;74:243-54. 11. Noreau L, Fougeyrollas P, Boschen KA. Perceived influence of the environment on social participation among individuals with spinal cord injury. Top Spinal Cord Inj Rehabil 2002;7:56-72.
12. Wee J, Paterson M. Exploring how factors impact the activities and participation of persons with disability: constructing a model through grounded theory. Qual Rep 2009;14:165-200. 13. Juvani S, Isola A, Kynga¨s H. The northern physical environment and the well-being of the elderly aged over 65 years. Int J Circumpolar Health 2005;64:246-56. 14. Odderson IR, Jaffe KM, Sleicher CA, Price R, Kropp RJ. Gel wheelchair cushions: a potential cold weather hazard. Arch Phys Med Rehabil 1991;72:1017-20. 15. Ripat JD, Redmond JD, Grabowecky BR. The winter walkability project: occupational therapists’ role in promoting citizen engagement. Can J Occup Ther 2010;77:7-14. 16. Shirado O, Shundo M, Kaneda K, Strax TE. Outdoor winter activities of spinal cord-injured patients. Am J Phys Med Rehabil 1995;74:408-14. 17. Smith L. Long-term rehab. Weathering the winter in a wheelchair. Rehab Manag 2000;13:62-4. 18. Tadano S, Tsukada A. Some mechanical problems to use electric wheelchairs in a snowy region. In: Kejzer J, Tanaka E, Yamada H, editors. Human biomechanics and injury prevention. Tokyo: Springer; 2000. p 199-204. 19. Lemaire ED, O’Neill PA, Desrosiers MM, Robertson DG. Wheelchair ramp navigation in snow and ice-grit conditions. Arch Phys Med Rehabil 2010;91:1516-23. 20. Schneidert M, Hurst R, Miller J, Ustun B. The role of environment in the International Classification of Functioning, Disability and Health (ICF). Disabil Rehabil 2003;25:588-95. 21. Government of Canada. Canadian climate normals 1981e2010 station data. Climate ID 5023222 WMO ID 70852 TC ID YWG. Available at: http://climate.weather.gc.ca/climate_normals/results_1981_ 2010_e.html?stnIDZ3698&provZ&langZe&dCodeZ1&dispBack Z1&StationNameZwinnipeg&SearchTypeZContains&provinceZ ALL&provButZ&month1Z0&month2Z12. Accessed April 22, 2014. 22. Statistics Canada. Population, urban and rural, by province and territory (Manitoba). Statistics Canada 2011 census of population.
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23. 24.
25. 26.
Available at: http://www.statcan.gc.ca/tables-tableaux/sum-som/l01/ cst01/demo62h-eng.htm. Accessed February 23, 2015. Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res 2005;15:1277-88. Cornwell B. Network bridging potential in later life: life-course experiences and social network position. J Aging Health 2009;21: 129-54. Stro¨hle A. Physical activity, exercise, depression and anxiety disorders. J Neural Transm 2009;116:777-84. Shumway-Cook A, Patla A, Stewart A, Ferrucci L, Ciol MA, Guralnik JM. Environmental components of mobility disability in community-living older persons. J Am Geriatr Soc 2003;51:393-8.
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7 27. Rimmer JH, Riley B, Wang E, Rauworth A, Jurkowski J. Physical activity participation among persons with disabilities: barriers and facilitators. Am J Prev Med 2004;26:419-25. 28. Skinner MW, Yantzi NM, Rosenberg MW. Neither rain not hail not sleet nor snow: provider perspectives on the challenges of weather for home and community care. Soc Sci Med 2009;68:682-8. 29. Lindsay S, Yantzi N. Weather, disability, vulnerability, and resilience: exploring how youth with physical disabilities experience winter. Disabil Rehabil 2014;36:2195-204. 30. Morales E, Gamache S, Edwards G. Winter: public enemy #1 for accessibility. Exploring new solutions. Journal of Accessibility and Design for All 2014;4:29-51.
ORIGINAL RESEARCH
Barriers to Wheelchair Use in the Winter Jacquie D. Ripat, PhD,a Cara L. Brown, MSc,a Karen D. Ethans, MD, FRCPCb From the aDepartment of Occupational Therapy, College of Rehabilitation Sciences, Faculty of Health Sciences, University of Manitoba, Winnipeg, Manitoba; and bSection of Physical Medicine and Rehabilitation, Department of Medicine, University of Manitoba, Winnipeg, Manitoba, Canada.
Abstract Objectives: To test the hypothesis that challenges to community participation posed by winter weather are greater for individuals who use scooters, manual and power wheelchairs (wheeled mobility devices [WMDs]) than for the general ambulatory population, and to determine what WMD users identify as the most salient environmental barriers to community participation during the winter. Design: Cross-sectional survey organized around 5 environmental domains: technological, natural, physical, social/attitudinal, and policy. Setting: Urban community in Canada. Participants: Convenience sample of WMD users or their proxy (NZ99). Interventions: Not applicable. Main Outcome Measures: Not applicable. Results: Forty-two percent identified reduced outing frequency in winter months, associated with increased age (c3Z6.4, PZ.04), lack of access to family/friends for transportation (c2Z8.1, PZ.04), and primary type of WMD used in the winter (scooter c2Z8.8, PZ.003). Most reported tires/casters becoming stuck in the snow (95%) or slipping on the ice (91%), difficulty ascending inclines/ramps (92%), and cold hands while using controls or pushing rims (85%); fewer identified frozen wheelchair/scooter batteries, seat cushions/backrests, or electronics. Sidewalks/ roads were reported to be problematic by 99%. Eighty percent reported needing additional help in the winter. Limited community access in winter led to a sense of loneliness/isolation, and fear/anxiety related to safety. Respondents identified policies that limited participation during winter. Conclusions: People who use WMDs decrease their community participation in cold weather because of multiple environmental barriers. Clinicians, researchers, and policymakers can take a multidimensional approach to mitigate these barriers in order to enhance community participation by WMD users in winter. Archives of Physical Medicine and Rehabilitation 2015;-:------ª 2015 by the American Congress of Rehabilitation Medicine
Participation refers to the ability of a person to be involved in any life situation,1 and “occurs at the intersection of what the person can do, wants to do, has the opportunity or the affordance to do, and is not prevented from doing by the world in which the person lives and seeks to participate.”2(pS30) Participating in self-defined, meaningful activities can enhance an individual’s sense of competence and well-being, both of which are essential for healthy emotional, psychological, and skills-based development.3 Community participation, which encompasses accessing community spaces, activities, and social relationships,4 is more closely
Presented in part to the Canadian Association of Occupational Therapists, May 30 to June 1, 2013, Victoria, British Columbia, Canada. Disclosures: none.
related to life satisfaction than illness or impairment for people with disabilities.5 To develop strategies to maximize community participation for people with disabilities, there is a need to explore the barriers to participation. In Canada, 1.2 million people need or use mobility aids to participate in their community and society.6 Wheeled mobility devices (WMDs), such as wheelchairs, are 1 category of mobility aids. While more homes, schools, and community-based facilities are incorporating accessibility features, users of WMDs continue to experience barriers to their community participation.4,7-10 Furthermore, the existence of snow, ice, and cold temperatures characteristic of the winter months in some locations create additional challenges. Although community participation issues posed by winter are genuine concerns for all residents, they are compounded for users of WMDs.11,12
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Cited barriers to WMD use in the winter include cold temperatures,13,14 ice- and snow-covered roads and sidewalks,15-19 frozen wheelchair system components,14 reduced wheelchair battery life,16,18 decreased manual dexterity and strength for operating controls,14,19 and risk of thermal injury.14,16 However, there is a lack of research exploring the details and processes of winter weather barriers or of service and policy-related barriers. Since accessibility issues are multifaceted, it is important to explore winter weather barriers inherent in WMDs, and in the built, social, and policy environments in order to identify areas that are amenable to change. A biopsychosocial model of disability, the International Classification of Functioning, Disability and Health,1 guided this research. In particular, exploring the role of the environment in restricting societal participation was foundational.1,20 The research question was as follows: What do people who use WMDs identify as the most salient environmental barriers to community participation in the winter? The findings of this research are intended to identify winter weather issues of the greatest impact on WMD users’ community participation that can inform future research.
Methods Design The researchers developed a survey (available from the corresponding author), based on a literature review of WMD winter/cold weather issues, and issues generated by the researchers (health care professionals/researchers with experience working with WMD users). Closed-ended (fixed choice and Likert scale) and open-ended questions were developed and organized around the following 5 environmental domains identified in the International Classification of Functioning, Disability and Health20: technological, natural, physical, social/attitudinal, and policy (appendix 1). Seven people participated in a pilot study of utility and content validity, and the survey was subsequently modified to add questions, improve wording clarity, and increase response ease. The survey was administered online using SurveyMonkey,a with an option for telephone or mail-in administration. A university-based research ethics board approved the study; all participants provided informed consent.
Sample The study was conducted in Manitoba, Canada, where Winnipeg (the provincial capital) experiences average winter temperatures well below 0 C and a yearly average snowfall of 113.7cm.21 While the total provincial population is 1.2 million people,22 the actual number of WMD users is unknown. Recruitment consisted of circulating a poster advertising the study to clinics and organizations that provide services to WMD users, and organizations shared study information via their established communication mechanisms (eg, e-mail, newsletter). All survey respondents were a part- or full-time WMD user (wheelchair or scooter), or a caregiver of the WMD user (as proxy respondents), Manitoba residents, and English speaking. Long-term care
List of abbreviations: WMD wheeled mobility device
facility residents were excluded since we anticipated their community participation experience to be unique. The survey was open over the span of 2 winters (December 2011 through May 2012, and January through May 2013).
Data analysis Survey data were imported into SPSS version 22b for descriptive analysis (frequencies) and analysis of the hypothesis that maintained outing frequency would be associated with participants who were younger, had access to private transportation, used a power wheelchair, lived with others, and reported a longer duration of wheelchair use. Frequency of outing data were dichotomized into “frequent” (defined as 3e6 times/wk and everyday) or “infrequent” (<3 times/wk) outings. All demographic data were categorical. The chi-square statistic (P<.05, 2-tailed) was used to determine the association of the change in frequency of outing with the demographic variables. Verbatim responses to the open-ended questions were imported into a Word document.c Directed content analysis23 was conducted by the first author and a research assistant whereby written responses were coded with a shorthand phrase that captured the statement intent, and similar codes were grouped into overarching categories within each of the 5 environmental domains. Confirmation of category assignment was conducted by the second author.
Results Ninety-nine respondents completed the survey (1 responded through mail-in); not all respondents answered all the questions. Demographic and social characteristics of survey respondents are shown in table 1. Analysis of the responses to the open-ended questions yielded additional explanatory findings within each environmental domain and are discussed in the respective sections below. Respondents indicated the frequency with which they used their WMDs to go outdoors/into the community in the summer and in the winter (fig 1). When comparing summer and winter outing frequency, 42.4% indicated reducing their outing frequency in winter months.
Technology/equipment Respondents were asked to identify winter-related technology/ equipment challenges. Most reported that their tires/casters became stuck in the snow (95.1%; nZ82 responses). Difficulty ascending inclines/ramps (91.8%; nZ85 responses), and tires or casters slipping on the ice (90.9%; nZ77 responses) were frequently reported. Respondents reported cold hands while using controls or pushing rims (85.3%; nZ75 responses). Fewer respondents identified frozen wheelchair/scooter batteries (38.6% of 44 responses), frozen seat cushions/backrests (30.9% of 68 responses), or frozen electronics (23.2% of 43 responses) as problematic. Reduced outing frequency was associated with scooter use (c2Z8.8, PZ.003), whereas no change in frequency of outings was reported by those who identified they primarily used a power wheelchair (c2Z3.7, PZ.05) or manual wheelchair (c2Z.13, PZ.9) in the winter. While decreased outing frequency was associated with increased age (c2Z6.4, PZ.04), it was not associated with duration of WMD use (c2Z2.8, PZ.4). The detrimental effect of cold temperature was summed up by 1 power wheelchair user: “Too cold to even go out due to www.archives-pmr.org
Barriers to wheelchair use in the winter Table 1
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Demographic and social characteristics of participants
Characteristics Residence (nZ98) Winnipeg Elsewhere in Manitoba Respondents (nZ99) WMD user Family member/caregiver Primary WMD type used in winter months (nZ92) Manual wheelchair Power wheelchair Scooter Other (eg, wheeled walker) Duration of WMD use (nZ97) <1y 1e5y 6e10y >10y Age of WMD user (nZ95) <20y 20e50y 51y Transportation (nZ93) Public transportation only Private transportation only Both Cohabitant status (nZ89) Lives alone Lives with others
Percentage 80.6 19.4 75.8 24.2 40.2 38.0 16.3 5.4 4.1 28.9 22.7 44.3 8.4 41.1 50.5
the early or late winter when snow is not as heavy, it is exceedingly difficult to move about.” However, each of the other 3 areas was problematic for more than 40% of respondents. In the home, participants identified issues with entrance/egress. For example, 1 power wheelchair user reported not going out at all throughout the winter, stating that “[I] have a motorized lift to access house. The lift does not operate well (if at all) in temperatures below zero degrees.” Public transportation access and use was impacted by weather. One caregiver indicated, “We live a very long way from the bus, so if we can’t get a ride after a snowfall before the plows come, we are basically trapped until the city gets around to plowing our neighborhood.” However, type of transportation used (private only, public only, or both) was not associated with reduced winter outing frequency (c2Z1.40, PZ.50). When able to get out of their homes, respondents shared the community challenges they faceddfor example, driving one’s power wheelchair on the streets because of unplowed sidewalks. Respondents reported slippery entrances to community businesses, and powered doorways that became compacted with snow, limiting their opening. Accessible spaces became temporarily inaccessible. One respondent described the problem of “wheelchair parking spots ‘disappearing’ when ice and snow cover the markings on the ground.”
Social/attitudinal environment 26.9 26.9 46.2 42.7 57.3
NOTE. n refers to number of respondents answering each question.
the metal of the chair getting cold and then radiating up through the person in the chair.”
Physical/natural environment Respondents identified problems they experienced in any of 4 areas of home and community environments during the winter. Almost all identified issues with sidewalks, roads, or both (98.9%: 89 responses). For example, 1 manual wheelchair respondent reported that “sidewalks and streets are impassable most of the winter, and even in
Seventy-nine people responded to a question concerning the need for additional help in the winter as compared with the summer; 88% reported needing additional assistance. Among those who responded affirmatively, 67.5% reported needing additional help with transportation, and correspondingly, maintained winter outing frequency was found to be associated with access to family/friends for transportation (c2Z8.1, PZ.04). Fifty percent reported requiring additional social/emotional support, 43.8% desired additional home maintenance support (such as snow clearing), and 36.3% identified needing assistance to access their home. As 1 power wheelchair user wrote, “As per the snow, I would need someone to push me because there get to be big ruts on the sidewalks or soft snow and slush. I have been stuck before, and am afraid to go very far by myself in case it happens again.” Respondents were asked whether they received the needed assistance in the winter. Seventy people responded; while 42.9% reported they received additional assistance (primarily from family members), most (57.1%) did not receive needed assistance. Others reported additional financial burdens. For example, an older adult scooter user shared, “I always pay a lot of money to have snow removed and groceries delivered.”
Policy environment
Fig 1 Cumulative seasonal frequency WMD is used to go outside (summer nZ94; winter nZ93).
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When asked about responsibility for addressing winter-related issues, respondents suggested that responsibility for the issues should be shared among stakeholders. Government officials and policymakers were identified by 87% of respondents as holding responsibility, and 79% attributed winter-related issues to public transportation policy. As 1 manual wheelchair user stated, “[Public accessible transit] can refuse to pick you up due to too much snow. This makes it difficult when you have to go to work.” Wheelchair vendors and manufacturers, and health care providers were each identified by more than 50% of respondents as having a role to play in addressing winter-related issues by developing and/ or recommending winter-appropriate WMDs, and joining WMD users in advocacy efforts toward improved policy.
4 However, while respondents viewed winter issues to be a shared responsibility, only 40% had discussed their winter-related issues with government officials, 44% had discussed issues with their health care providers, and one-third or fewer respondents reported having discussions with other stakeholders.
Emotional consequences of limited community participation Respondents self-identified added social and emotional challenges faced during winter in their open-ended responses. For instance, 1 manual wheelchair user who reported going out only 1 to 3 times per month in the winter wrote, “The pressure of asking for help is not a good feeling. As a once very independent person, I feel useless and EXTREMELY frustrated.” The result of an inability to access one’s community in the winter led to a sense of loneliness and isolation for some people, as shared by 1 older adult manual wheelchair user: “I’m fortunate that I do stitch work and have a TV and my budgies to help me get by, but it still gets very lonely especially when I’m not able to get out in the winter.” Fear and anxiety were reported, related to anticipation of compromised safety. For example, 1 young adult manual wheelchair user stated, “I have been dumped out of my wheelchair a few times while someone tries to push me up and through snow piles and over lumpy sidewalks/roads. It’s pretty freaky to get dumped, and also cold and sometimes painful.”
Discussion This research supports anecdotal knowledge that winter weather conditions impact participation levels for WMD users. While it could be argued that participation patterns change for the entire population in the winter, our results confirm a large variation in participation between seasons in WMD users, as 42% of the sample changed their outing frequency from 3 to 7 times per week to less than 3 times per week. The magnitude of this change is disconcerting, considering the evidence that links activity, socialization, and mental and physical health.24,25 Associations between outing frequency and demographic variables provide insight into the barriers to winter community participation. It was not surprising that age was associated with reduced frequency of outings, since a variety of factors related to aging could impact winter outing frequency. In a study26 of community-dwelling older adults with and without mobility impairments, only 6% of those with mobility limitations reported going out when it was icy (as compared with approximately half of those without reported mobility limitations). Furthermore, in the same study, only 12% of older adults with mobility limitations reported going out when it was dark (as would be the case for a greater proportion of the day during the winter). The association between scooter use and reduced winter outings may be because scooters cannot be used on accessible public transportation. Thus if sidewalks and roads are not clear, scooters cannot be used for community access. Conversely, maintaining winter outing frequency for power wheelchair users may be attributed to the ability to navigate sidewalk surfaces in conditions when some snow and ice exists. Several variables that were expected to influence outing frequency change were not found to be significant. We expected outing frequency to remain stable if someone lived in a residence where snow-clearing assistance was available, but this was not the case. We anticipated that those with a longer duration of WMD use would feel more competent or have acquired technologies suited to
J.D. Ripat et al winter weather, but this variable did not impact outing frequency. Finally, as evidence cites lack of transportation as one of the largest barriers to community access in all seasons,27 we expected that those with access to both private and public transportation would maintain their outing frequency; instead it was availability of family and friends to assist with transportation that impacted outing frequency. A possible explanation is that family and friends are needed to facilitate vehicle access in the winter (such as shoveling walks or ramps, or both). The most frequently cited technological issues were slipping on ice and getting stuck, supporting calls for future research on improving tire and caster traction.19 Alternatively, travel surfaces could be targeteddfor example, by improving ramp traction or installing heated sidewalks. Another focus could be designing wheelchair drive controls for ease of access with mitts or gloves, or exploring use of wheelchair parts that minimize cold conduction. Issues with snow-clearing practices and transportation were prominent themes. This finding suggests that communities need to take a multipronged approach to improve snow-clearing practices; existing services for clearing private entrances and walks should be reviewed for affordability and availability, and priorities for clearing municipal sidewalks and roads in the winter should be discussed. In addition, the results of this study underscore the need for accessible transportation policy and practice evaluation, with specific attention to winter usage. Half of the respondents did not receive the additional assistance they required in the winter. Similarly, other studies13,15,28,29 with individuals with disabilities have emphasized the physical and social isolation that occurs in winter months. Thus while there is a need to evaluate policies and services to ensure availability of adequate assistance, there are times when going outside in the winter may not be possible or desirable. Research into interventions to mitigate social isolation, such as Internet or phone support networks, is indicated. Respondents saw improving winter community access as a shared responsibility among stakeholders, but most had not advocated for their needs. Trialing strategies to enhance user groups’ abilities to be empowered and unified in their advocacy efforts through the use of approaches such as participatory action research may be warranted. Despite the extent and magnitude of issues experienced by WMD users, with the exception of a few research reports,19,29,30 relatively little attention has been paid to examining solutions to improving community participation for WMD users in the winter. While these study findings are limited to a specific population, the findings can provide a foundation for future research for those who work with or provide services to WMD users in countries in temperate and frigid climates.
Study limitations Limitations include a low response rate in relation to the sampling frame, defined as all WMD users in Manitoba. The aim of the survey was to glean exploratory descriptive information, and thus while we addressed content validity, we did not address test-retest reliability, and the variability in question response structure was not conducive to testing for internal consistency. The responses to the open-ended questions may be useful for guiding future survey development appropriate for psychometric testing. We assumed that a decrease from 3 or more outings to less than 3 times a week in the winter would signal an important decrease in outing frequency, and would be different than a population without mobility
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Barriers to wheelchair use in the winter
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issues. The limited data on seasonal change in outing frequency for the general population make it difficult to determine how this pattern differs for people with mobility issues. All data collected were anonymous and were open to anyone to respond; thus we were unable to discern whether a single respondent entered data on more than 1 occasion. We sought to hear a broad range of WMD user experiences, and it may be that the experience of partor full-time WMD users differs. Despite these limitations, the results of this survey provide a useful first step in identifying the type and frequency of winter issues faced by WMD users from a broad environmental perspective.
Suppliers
Conclusions
Corresponding author
People who use WMDs decrease their community participation considerably in cold weather; for many this results in isolation and feelings of dependency. Specific issues related to the interface of WMDs and winter were identified. While cold weather is not modifiable, many environmental factors relevant to WMD use and users are amenable to change. In geographic areas where snow, ice, and cold temperatures span from several months to the greater part of a year, pursuing actions to ameliorate the effects of cold weather on community participation is worthwhile.
a. SurveyMonkey; SurveyMonkey, Inc. b. SPSS version 22; IBM Corp. c. Word document; Microsoft Corp.
Keywords Cold temperature; Social participation; Rehabilitation; Snow; Wheelchairs
Jacquie D. Ripat, PhD, Department of Occupational Therapy, College of Rehabilitation Sciences, Faculty of Health Sciences, University of Manitoba, R131-771 McDermot Ave, Winnipeg, Manitoba R3E 0T6. E-mail address: [email protected].
Acknowledgments We thank Shannon Keys, MA, and Erin Fonseca, MOT, for their role as research assistants in this study.
Appendix 1 Sample Survey Questions Question 1.4 How long have you/has your family member been a wheeled mobility device user?
Less than 1 year 1e5 years 6e10 years More than 10 years
Question 1.7 On average, how often do you/does your family member use the wheeled mobility device to go outside during the winter months? (November 1eApril 1)
Every day Between 3e6 times per week 1e2 times per week 1e3 times per month For emergencies only Other (please specify) _________________________
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J.D. Ripat et al
Question 2.10 How often do you/does your family member face the following issues when using a wheeled mobility device in the winter?
Issues Faced When Using a Wheeled Mobility Device in Winter
Frequently (More Than Once a Month)
Occasionally (Once a Month or Less)
Never
Not Applicable
Frozen wheelchair/scooter battery that dies too quickly Electronic components freeze Tires/casters get stuck in snow Tires/casters slip on ice Unable to get up inclines/ramps due to ice or snow Seat cushion or backrest freezes Cold hands from using controls or hand rims
Question 4.2 In which areas do you feel you/does your family member need(s) additional help with in the winter (select all that apply)?
Access to the home Social/emotional support Transportation Home maintenance Other (please specify) ________________________ Not applicable
Question 4.3 If you indicated in 4.2 that there are areas which require more assistance in winter months, please describe the type of help required.
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7 27. Rimmer JH, Riley B, Wang E, Rauworth A, Jurkowski J. Physical activity participation among persons with disabilities: barriers and facilitators. Am J Prev Med 2004;26:419-25. 28. Skinner MW, Yantzi NM, Rosenberg MW. Neither rain not hail not sleet nor snow: provider perspectives on the challenges of weather for home and community care. Soc Sci Med 2009;68:682-8. 29. Lindsay S, Yantzi N. Weather, disability, vulnerability, and resilience: exploring how youth with physical disabilities experience winter. Disabil Rehabil 2014;36:2195-204. 30. Morales E, Gamache S, Edwards G. Winter: public enemy #1 for accessibility. Exploring new solutions. Journal of Accessibility and Design for All 2014;4:29-51.