Abstract
Older adults with developmental disabilities (DD) are a growing population who experience additional health conditions, including dementia, stroke, mental illness, and orthopedic injuries, at rates similar to or higher than those of the general U.S. population (Kim et al., 2011). DD consist of chronic, severe physical or cognitive difficulties that begin in childhood and require that individuals have support for participation (American Association on Intellectual and Developmental Disabilities, 2017). Examples of DD include intellectual disability, cerebral palsy, spina bifida, Down syndrome, and autism spectrum disorder (ASD). Adults with DD undergo age-related changes at ages earlier than typically developing populations and experience additional health disparities, including difficulty accessing quality health care and limited appropriate health care services (Kim et al., 2011; Krahn & Fox, 2014; Williamson et al., 2017).
A contributing factor to these health disparities is health care providers’ knowledge of and comfort working with adults with DD (Williamson et al., 2017). For example, nurses and physicians reported limited knowledge about intellectual disability and experienced stress, low confidence, and fear about working with patients with an intellectual disability (Pelleboer-Gunnink et al., 2017). Pace et al. (2011) found that although most of the physicians they surveyed felt comfortable treating patients with Down syndrome, 9.8% reported feeling uncomfortable. Another study found that physicians had insufficient knowledge about ASD and expressed a need for training and resources to work with adults with ASD (Zerbo et al., 2015).
In addition, although Vermeltfoort and colleagues (2014) found that occupational therapy students reported feeling unprepared but willing to work with adults with intellectual disability in rehabilitation settings, none of the extant research about health care providers’ perceptions about working with adults with DD included occupational therapy practitioners. Therefore, the purpose of this study was to assess occupational therapy practitioners’ perceptions about working with older adults with DD in traditional health care settings. These perceptions—including comfort, knowledge, challenge, and supports, and barriers—about working with older adults with DD in traditional health care settings may inform potential training and resource needs for practitioners.
Method
Research Design
We used a survey design that was intended to assess the perceptions of a sample of occupational therapy practitioners. The Midwestern University institutional review board approved the study methods before data collection.
Sample
Participants were recruited from a systematic random sample of 1,000 occupational therapy practitioners who were members of the American Occupational Therapy Association’s (AOTA’s) Gerontology Special Interest Section or Physical Disabilities Special Interest Section (SIS) and who worked in traditional health care settings (Table 1 contains a list of the settings). AOTA’s database yielded 8,105 members who met the criteria for specified SIS membership and work settings. A random sample was developed by selecting every eighth name, for a total of 1,013, from which 1,000 names were selected. Six additional names were provided when the U.S. Postal Service returned a survey without a forwarding address.
Professional Characteristics of Participants (N = 310)
Note. Percentage totals are less than 100 because blank responses are not included. DD = developmental disabilities.
Multiple responses were permitted; category names are from the American Occupational Therapy Association membership database, except outpatient and assisted living facility, which participants provided as write-in options.
Survey Instrument
We designed the survey on the basis of previous research on health care providers’ perceptions about working with people with DD cited in a literature review, survey instrument design resources, and other related literature. The 19-question survey included demographics and questions about perceptions of comfort, knowledge, challenge, and supports and barriers that may be present when working with older adults with DD. In addition to background information about participants’ occupational therapy experience (5 questions), the survey included 3 questions about previous work with older adults with DD in health care settings. The 4 questions about how comfortable or knowledgeable participants felt assessing or treating an older adult with DD used 4-point ordinal scales (Table 2 lists the response options).
Perceptions About Working With Older Adults With DD (N = 310)
Note. DD = developmental disabilities.
A similar 4-point scale was available so participants could rate how challenging they felt it was to assess or treat an older adult with DD (see Table 2). Two questions asked about factors that supported or hindered the respondent’s level of comfort with and skills in working with older adults with DD; those items provided 8–10 options informed by the literature, with an open-ended additional response available. Three questions inquired about the amount and type of support participants felt they needed, and an additional comment section was provided for any other needs related to providing occupational therapy services for older adults with DD in traditional health care settings where they receive care for other health conditions. The survey questions were pilot tested for clarity at a state occupational therapy conference, and we made changes based on feedback. No pilot data were included in the analysis, and no formal survey validation process was completed.
Data Collection and Analysis
We mailed the survey, a cover letter describing the study’s purpose, and a self-addressed, stamped envelope to 1,000 occupational therapy practitioners. We sent follow-up postcard reminders approximately 1 mo after the initial mailing. Participants had the option to complete the survey by traditional mail or electronically via SurveyMonkey® (Survey Monkey, San Mateo, CA) and demonstrated informed consent by returning the survey.
Researchers reviewed the returned surveys to ensure that participants met the inclusion criteria. Partially completed surveys were accepted with blank questions recorded as “unanswered,” and percentages were calculated on the basis of the total number of participants. Researchers reviewed open-ended responses and categorized them according to existing answer selections or created categories to reflect the information. The data were analyzed using descriptive statistics with Microsoft Excel (Version 2016; Microsoft Corporation, Redmond, WA).
Results
Participants
Of the 1,000 participants recruited to complete the survey, 311 responded. One respondent’s survey was excluded because a pediatric outpatient clinic was the only work setting noted, resulting in 310 participants, for a 31% response rate. Table 1 provides the professional characteristics of the participants.
Most of the participants (85.2%, n = 264) had worked with one or more older adults with DD within the past year, verifying that older adults with DD receive occupational therapy in traditional health care settings. However, consistent with the relatively low prevalence of DD, older adults with DD were infrequent occupational therapy clients in these settings; only 8.4% (n = 26) of participants said they had worked with more than 10 older adults with DD in the past year. Most often, the DD of clients with whom participants reported working included intellectual disability (n = 225), cerebral palsy (n = 130), or Down syndrome (n = 84). Clients with DD were most often referred to occupational therapy for orthopedic (n = 193) or neurological conditions (n = 175).
Perceptions About Working With Older Adults With Developmental Disabilities
Table 2 contains participants’ views about their comfort with, knowledge of, and challenges regarding working with older adults with DD. Most indicated that they felt comfortable working with older adults with DD. Although almost all participants indicated some level of comfort with the population, 22.3% (n = 69) felt somewhat or not at all comfortable assessing older adults with DD, and 19.4% (n = 60) felt somewhat or not at all comfortable treating older adults with DD. Most participants indicated that they felt knowledgeable to work with older adults with DD, yet 32.3% (n = 100) reported feeling somewhat or not at all knowledgeable to assess older adults with DD, and 31.0% (n = 96) of participants felt somewhat or not at all knowledgeable to treat older adults with DD.
Almost all of the participants indicated that they felt it was at least somewhat challenging to assess (92.9%, n = 288) or treat (92.6%, n = 287) older adults with DD. Of these, many felt it was challenging or extremely challenging to work with older adults with DD (assess, 42.3%, n = 131; treat, 39.0%, n = 121), indicating a potential need for additional resources.
Supports and Barriers
When indicating factors that supported their comfort and skills regarding working with older adults with DD, most participants noted that previous experience with people with DD was a key support. This included previous professional experience with adults with DD (60.3%, n = 187), personal experiences with people with DD (54.5%, n = 169), and professional experience with children with DD (46.5%, n = 144). Other key supports frequently identified included participants’ entry-level occupational therapy education (48.7%, n = 151) and information from other professionals (44.5%, n = 138).
Table 3 presents the barriers that participants felt affected their comfort and skills regarding working with older adults with DD. Participants noted the cognitive impairments of older adults with DD as barriers, such as the client not understanding the therapist (47.7%, n = 148) and difficulty understanding or meeting the client’s cognitive needs (37.1%, n = 115). Another common barrier participants reported was insufficient contact with caregivers, including a lack of sufficient caregiver involvement (47.7%, n = 148) and inadequate communication with caregivers (32.9%, n = 102).
Factors That Hinder Occupational Therapy Practitioners’ Comfort and Skills Working With Adults With DD
Note. DD = developmental disabilities.
Multiple responses were permitted.
Nearly all of the participants (91.6%, n = 284) indicated that they needed some level of support to overcome the barriers they faced when working with older adults with DD. Over half indicated that, of the four options provided, they needed a great deal or a fair amount of support (55.5%, n = 172), reinforcing a potential need for resources. The most commonly selected options for the type of desired support were suggestions for dealing with challenging behavior (64.2%, n = 199), key information to obtain from caregivers (61.9%, n = 192), appropriate assessments to use with the population (54.8%, n = 170), tools to foster communication (49.0%, n = 152), and general guidelines for working with older adults with DD (48.4%, n = 150).
Discussion
Many occupational therapy practitioners have worked with older adults with DD in physical disability or geriatric health care settings, demonstrating that occupational therapy practitioners in these settings need to be prepared to work with this small but growing population. Most occupational therapy practitioners in this study reported feeling comfortable with and sufficiently knowledgeable to work with older adults with DD. Although this reflects well on occupational therapy practitioners’ preparation to work with this population, almost one-third of participants indicated feeling somewhat or not at all knowledgeable, demonstrating a need for additional training or resources. Moreover, almost all participants indicated that they felt working with older adults with DD was challenging. These findings are consistent with research on other health professionals (Pace et al., 2011; Pelleboer-Gunnink et al., 2017; Williamson et al., 2017; Zerbo et al., 2015).
Given that health providers’ perceptions about people with DD have the potential to perpetuate health disparities, it is important to ensure that occupational therapy practitioners feel comfortable with and adequately knowledgeable to work with older adults with DD; this may be accomplished by addressing perceived supports and barriers. Participants in this study recognized previous experiences with persons with DD as a key support; this is consistent with previous research on occupational therapy students’ learning activities with adults with DD (Lahav et al., 2015; Vermeltfoort et al., 2014).
Seeking out experiences with the population of adults with DD could foster support for practice. Current practitioners may need to seek additional training, resources, or both to address perceived barriers to working with adults with DD. A systematic review of health care providers’ training needs for working with clients with intellectual disability found that communication approaches, knowledge about intellectual disability, and assessment strategies are common needs (Hemm et al., 2015). In addition to these, participants indicated that strategies for addressing challenging behavior and collaboration with caregivers are important concerns.
Multidisciplinary training may be a useful strategy to address challenges for current health care practitioners to work with adults with DD (Hemm et al., 2015; Pelleboer-Gunnink et al., 2017). Older adults with DD are uncommon clients in traditional health care settings, and as one participant wrote, it is difficult to prioritize continuing education on this population. Therefore, ready-to-use clinical resources and online content may be more useful. At present, limited resources are available for occupational therapy or other health professions that are specific to the needs of this population. Future research is needed to develop and study the usefulness and effectiveness of resources and training for occupational therapy practitioners and other health care providers to work with older adults with DD in traditional health care settings.
Limitations
The sample was limited to AOTA members in the Gerontology and Physical Disabilities SISs and therefore may not be representative of all occupational therapy practitioners in the United States. A selection bias was possible because potential participants with experience working with adults with DD may have been more likely to respond to the survey. Although the survey instrument was developed after an extensive review of the literature and was pilot tested, there was no formal validation process completed. Open-ended question options were available, but participants may have been limited by the options provided in the survey, especially regarding supports and barriers.
Implications for Occupational Therapy Practice
The results of this study have the following implications for occupational therapy practice:
Older adults with DD are infrequent but challenging clients for occupational therapy practitioners in traditional health care settings, and practitioners may need to seek resources or training to address the complex needs of the population.
Resources to support cognitive and communication needs and collaboration with caregivers of older adults with DD may be useful for occupational therapy practitioners in traditional health care settings.
To prepare future practitioners to work with older adults with DD, entry-level education programs should consider including experiential learning opportunities with adults with DD.
Conclusion
Similar to other health professionals, most occupational therapy practitioners in traditional health care settings find working with older adults with DD challenging, and many do not feel sufficiently knowledgeable to meet the needs of the population. These findings support the need to develop professional resources for occupational therapy practitioners working in physical disability and geriatric settings to work with older adults with DD and in particular to accommodate clients’ cognitive needs and address caregiver collaboration.
Footnotes
Acknowledgments
This project originated with the AOTA 2014–2017 Developmental Disabilities Special Interest Section Standing Committee. Special thanks are extended to Susan Cahill. These results were presented in part at the 2016 Illinois Occupational Therapy Association Conference, Lisle, and the 2017 AOTA Annual Conference & Expo, Philadelphia.
We acknowledge Courtney Shiffer, Maria Provancal, Kate Holdren, and Yazen Abukhaled for assistance with preparing the mailings and Lisa Park and Teague Murphy for research assistance. We gratefully acknowledge financial support from a Midwestern University College of Health Sciences Research Facilitation Grant awarded to Wanda Mahoney.