Abstract

Direct support professionals (DSPs) frequently accompany persons with intellectual and other developmental disabilities (IDD) to their health care appointments and could offer valuable insights into potential target areas for health-care improvement. DSPs completed surveys assessing healthcare processes and quality immediately following 118 ambulatory health care encounters involving their patients with IDD. Although DSPs generally judged the quality of health care as good (44%) or excellent (52%), they also observed that physicians directed questions to the DSP that the patient could have answered in 22% of encounters, and noted that physicians failed to ask critical psychosocial information in 24% of encounters. Competency-based training of DSPs around health-care advocacy could significantly improve the quality of health care provided to persons with IDD.

Direct service workers who receive monetary compensation to provide support to individuals with intellectual and other developmental disabilities (IDD) are often designated by the term direct support professionals (DSPs). In a national validation survey study ranking the importance of competencies for DSPs, the area of health and wellness was ranked by DSPs as the most important priority, followed by consumer empowerment, then communication (Larson et al., 2007).

DSPs may engage in a wide range of activities to support patient health and wellness (Leser, Pirie, Ferketich, Havercamp, & Wewers, 2018). Frequently, DSPs accompany their patients to health-care appointments, where they facilitate communication and exchange of critical information between health-care professionals and their patients, assist with examination procedures, communicate back to the residential service providers the content and outcomes of health-care encounters, and assist with the implementation of health-care plans. Thus, DSPs serve as key informants, observers, and participants in health-care encounters for many adults with IDD.

Despite their intimate involvement in the health-care process, there is paucity of published literature examining DSP perspectives on the processes and quality of health care they observe, often limited to specific diseases such as diabetes or psychiatric conditions (Cardol, Rijken, & van Schrojenstein Lantman-de Valk, 2012; Christian, Snycerski, Singh, & Poling, 1999). DSP observations may inform our understanding of the content and structure of health care involving people with IDD, complementing the perspectives of self-advocates, family members, and physicians (Bond, Kerr, Dunstan, & Thapar, 1997; Erickson, Salgado, & Tan, 2016; Wilkinson, Dreyfus, Bowen, & Bokhour, 2012; Wilkinson, Dreyfus, Cerreto, & Bokhour, 2012). DSP insights have the potential for improving the quality of that health care and contributing to the health, safety, and wellness of the persons they support.

The purpose of this study, entitled DSPerspectives, was to capture DSP observations and opinions regarding selected elements of ambulatory health care provided by physicians to adults with IDD. The primary research questions were:

  1. What were salient characteristics of the patient (the individual with IDD), physician, DSP, and health care encounter?

  2. How did DSPs rate the quality of health care they observed?

  3. What patient, physician, DSP, and health care encounter characteristics were associated with higher DSP-rated quality of health care?

We hypothesized that DSPs would rate those health-care encounters as excellent in which (a) both the patient and the DSP were treated with respect, (b) the doctor asked relevant psychosocial information, (c) the doctor addressed all of the patient's concerns, (d) the patient was engaged in the interview to the best of their capacity, and (e) the DSP was highly confident in their understanding of the patients' health conditions and health care plan.

Method

Participants

This is a cross-sectional survey study design examining ambulatory health care services of community-dwelling adults with IDD. Survey respondents were DSPs who accompanied adult patients with IDD to ambulatory medical appointments in nonemergency department settings, where health care was provided by physicians. The DSPs were employed by one of six residential service provider agencies who were are standing members of Developmental Disabilities–Practice- Research Network; the provider agencies thus represent a convenience sampling frame. One agency employed just 20 DSPs whereas each of the other five agencies employed several hundred. Participating DSPs and their affiliated agencies serve patients in a multicounty region of northeastern Ohio health care is provided through several regional health systems.

The study was conducted by the Developmental Disabilities–Practice-Based Research Network, a multi-stakeholder research collaborative, representing the disabilities, service and health care communities, and whose members include individuals with IDD, family members, administrative and clinical staff from residential service providers, nurses, physicians, and other health care professionals (www.ddpbrn.weebly.com). In a fashion typical for practice-based research networks, the study idea, aims, survey design and implementation, and interpretation of study findings were the collaborative effort of network members (Tyler & Werner, 2014). This study was approved by the Institutional Review Board of Case Western Reserve University.

Survey Instrument

The DSPerspectives survey items were created by members of the Developmental Disabilities – Practice-Based Research Network through a series of face-to-face meetings. A paper-only pilot version of the survey was administered by the participating residential service providers using the following protocol, which led to the revision of several items and to the deletion of several others. The final survey was comprised of 29 questions, including five open-ended questions. The survey items queried characteristics of the participants of the health-care encounter, process features, and outcome measures. An example of a question regarding patient characteristics was: “How well was the person able to describe the main reason for their health care visit?” with potential responses of “unable,” “with a lot of prompting,” “with a little prompting,” or “independently.” Items related to process features included duration of time spent at the health-care facility and duration of time spent face-to-face with the doctor. Outcome measures included “The doctor treated me with respect” with potential item responses “strongly disagree,” “disagree,” “neutral,” “agree,” or “strongly agree.” Although some items were based on factual information (e.g., time duration of encounters), others were based on DSP perceptions and opinions, (e.g., “There are important changes about the person's life that the doctor never asked about, such as changes in roommates, work, staff, family, residence”). The main outcome of interest was DSP-rated satisfaction with the health-care encounter.

Survey Administration

Participating residential service provider agencies introduced the survey study to their DSPs through standard communication methods employed by the agency for disseminating new information to them. Because of the potential for bias, great care was paid throughout the study design to reinforce to study participants that participation in the survey study was strictly voluntary and that results were confidential.

The DSPerspectives survey was included with the usual packet of paperwork provided by the agency to the DSP accompanying the individual with IDD to the ambulatory medical appointment. Mental health and other nonmedical health-care appointments were not surveyed. A cover letter accompanied each survey, which reinforced to the DSP the voluntary and confidential nature of the survey. DSPs placed their completed survey in the accompanied envelope and placed the sealed envelope in the collection box at their respective agencies. The collection box was sealed and completed surveys were collected by certified study staff and transported to the central data collection site of the PBRN Shared Resource of Case Western Reserve University.

DSPs were also provided the option of completing the survey through Qualtrics, an online accessible survey platform, which offered confidential survey accessibility and data retrieval similar to the paper format (Qualtrics, Provo, UT, 2016). For both survey collection options, the surveys were completely anonymous with no identifying information. For both options, DSPs were advised to complete the surveys on the same day as the health-care encounter. Residential provider supervisory staff were unaware whether or not the DSP completed a survey for any given health-care encounter. Data collection was conducted from November 2015 to April 2016.

Survey Analysis

Data from the survey paper format and from the online platform were merged. Standard descriptive statistics were calculated on all numerical survey data using IBM SPSS Statistics for Windows, Version 20.0, 2011. Analyses included measures of association between characteristics of DSP, patient, and processes of health care and DSP satisfaction with health care. Analyses were reported as aggregate data. Psychometric analysis was not conducted. Analysis of the open-ended survey items was not included in this article.

Results

DSPs completed 118 surveys; nearly all were submitted in paper form. Selected survey-item responses are summarized categorically in Table 1. Just over half of the encounters (n = 61) were with the primary care physician; for one third (n = 45) of the remaining encounters, the DSP was unsure of the physician's specialty or failed to identify the specialty. Three quarters (n = 90) of the encounters were with a physician who had prior contact with the patient.

Table 1

Selected DSP Survey Responses and Results

Selected DSP Survey Responses and Results
Selected DSP Survey Responses and Results

Three quarters (n = 89) of patients resided in a group home whereas nearly all of the remaining individuals lived in a supported living environment. In just over half of encounters (n = 64), the patient was either independently (n = 32), or with just a little prompting (n = 32), able to describe the main purpose for the encounter. Similarly, in half of the encounters (n = 60), the patient was able to describe independently (n = 35), or with just a little prompting (n = 25), their concerns to the doctor.

Just under half of the DSPs (n = 58) reported 5 years or greater experience working in the field of developmental disabilities (DD). However, nearly one quarter (n = 27) of DSPs had been employed by their present agency less than a year, and an additional 40% (n = 47) reported between 1 and 5 years of employment with their current employer. Only 70% (n = 83) of DSPs reported that they had received training in “running” medical appointments.

Nearly all (92%, n = 109) of the DSPs were clearly informed about the reason for the health-care encounter beforehand. On average, DSPs reported knowing the patient an average of 3 years, but 25% (n = 28) of the DSPs had known the patient 6 months or less. Just under 60% (n = 70) of the DSPs believed they were very familiar with the patient's preferences related to health-care services (e.g., male vs. female doctor, avoidance of white coat, etc.) whereas 8% (n = 10) admitted to being not familiar at all with these specific individual preferences.

Most (84%, n = 100) of the encounters were preplanned; just 8% (n = 10) were prompted by acute illness and another 8% (n = 9) were for evaluation of acute injury. In 11% (n = 13) of the encounters, a communication device was used. In 42% (n = 50) of the encounters, all or nearly all of the talking was between the physician and the DSP; whereas in 22% (n = 26) of the encounters, the DSP believed the physician asked the DSP questions that the patient could have answered. In 24% (n = 28) of the encounters, the physician failed to inquire about psychosocial issues (e.g., changes in roommates, work, staff, or family), which the DSP considered important. In most (83%, n = 99) of the encounters, written instructions were provided at discharge. The mean duration of time spent at the health care facility was 96 min, (SD of 135 min, 25th percentile of 45 min; 50th percentile of 60 min; 75th percentile of 90 min.) In 14% (n = 17) of encounters, 10 min or less was spent face-to-face with the physician, whereas in another 26% (n = 30) of the encounters, their face-to-face time was between 15 and 20 min.

For the most part, DSPs believed the physician generally addressed all of the patient's concerns (45% strongly agree, n = 54; 42% agree, n = 50). Just under 70% (n = 83) of DSPs were “perfectly clear” in their understanding of the seriousness of the patient's health conditions; 81% (n = 96) were “extremely confident” in their ability to report back to the agency exactly what happened during their health care visit; and 76% (n = 90) were “extremely confident” in their clarity about the follow-up health care plan. Most DSPs either strongly agreed (61%, n = 73) or agreed (29%, n = 35) that the physician treated the patient with respect. Similarly, most DSPs either strongly agreed (61%, n = 72) or agreed (28%, n = 33) that the physician treated them (the DSP) with respect.

Overall, the DSP rated the health care provided by the physician as either excellent (52%, n = 62) or good (44%, n = 52). There was no correlation between perceived quality of health care and physician or patient characteristics. Positive correlations were noted between health care quality and perceived respect towards patient (Pearson correlation coefficient r = 0.622), perceived respect towards DSP (r = 0.573), and thoroughness of physician addressing all concerns (r = 0.655). Counter-intuitively, there were negative correlations between health care quality and DSP's clarity regarding the seriousness of the patient's health-care conditions (r = −0.284), clarity about the content of the health-care encounter (r = −0.406), and their comprehension of the health-care plan (r = −0.407).

Discussion

Although family member perspectives on health care provided to individuals with IDD has been examined (Hewitt, Agosta, Heller, Williams, & Reinke, 2013; Lafferty, O'Sullivan, O'Mahoney, Taggart, & van Bavel, 2016; Prokup, Andridge, Havercamp, & Yang, 2017), little has been written about DSP perspectives regarding the health care received by their patients. This study is an important addition to the literature on health services in this population by systematically recording observations and insights provided by DSPs.

Caregivers, whether family or DSPs, play an important role in supporting the health care of people with IDD. Previous research documents caregivers' opinions of their own interactions with physicians as often mixed. Some felt they were treated as valuable information sources about the patient's needs, whereas others felt they were not being heard. Although there were positive experiences discussed about physicians working directly with the patient and demonstrating perseverance when treating people with IDD, caregivers also noted that some physicians demonstrated a lack of patience and an inability to work with and address patients directly (Erickson et al., 2016).

Our survey respondents exemplify the wide variation in experience found within the DSP workforce. Despite the intrinsic complexity of health-care encounters in general, further compounded by the complex health conditions, communicative and cognitive impairments, and service and support needs associated with this population, nearly one third of survey respondents reported no formal training in providing support during health-care encounters.

Effective health care support requires that DSPs themselves demonstrate high health literacy. Health literacy is defined as the ability to obtain, understand, and use health information in order to make decisions congruent with one's personal goals and values and to follow health-care plans as mutually agreed upon by patient and health-care professional (U.S. Department of Health and Human Services, 2000). Few studies have specifically examined health literacy in DSPs. One study examining the relationship between health literacy and medication administration skills in DSPs found 36/37 (97%) scored above threshold scores deemed adequate health literacy as measured by Short Functional Test of Health Literacy; however, the cohort of DSPs in that study was unusual in their educational status, with 78% reporting having completed college course work or college degrees (Erickson & LeRoy, 2015). In contrast, most DSPs have high school degrees or less education, and for significant numbers, English is not their primary language; both of these characteristics have been associated with low health literacy (The Lewin Group, 2008).

Most encounters characterized in our study involved preplanned health care with physicians familiar to the patient. Despite this familiarity, DSPs judged that physicians sometimes failed to engage patients in dialogue within their communicative capacity, and failed to inquire about relevant psychosocial issues. Although generally perceiving that patients with IDD were treated with respect and received good or excellent health care, DSPs also admitted they were sometimes unclear about the patient's health status and uncertain about how to implement the health care plan.

Study Implications

These findings from prior research, in conjunction with our own, indicate there is room for multi-stakeholder collaboration to identify and address communication barriers. Drawing on the survey data provided by DSPs, a set of messages directed to physicians, DSPs, residential service providers, and persons with disabilities can be crafted that could meaningfully and immediately improve health care quality.

Published research indicates that primary care physicians often feel they have been inadequately prepared to provide care for people with IDD. They feel they lack clinical experience working with patients with IDD, lack support by their practice in care management, and lack connections to important community and educational resources (Wilkinson, Dreyfus, Cerreto, et al., 2012). Physicians need to improve their interview skills so that individuals with IDD can maximally participate in the health encounter dialogue and exchange of information. Physicians need to routinely adopt a biopsychosocial approach to their inquiries, in order to adequately recognize the profound influence of psychological, social, and environmental factors on the health and well-being of their patients with IDD. Methods of physician training could include structured review of videotaped encounters involving their patients with IDD. A videotape review instrument specific for such encounters has been developed and is available from the primary author upon request. Additionally, physicians need to ascertain how well the DSP knows the patient and their health care preferences so they can appropriately gauge and interpret the information the DSP provides.

Prior research suggests that patients and physicians have different ideas about the role of the DSP during the health care encounters. In one study, patients saw the DSP's role as facilitating their own communication with the physician, but not so much that the physician spoke only to the DSP. Physicians showed preference for using the DSP as a proxy and speaking directly to them instead of the patient. The authors suggested this could be due to time constraints and concerns regarding efficiency (Wilkinson, Dreyfus, Bowen, et al., 2012).

On their part, DSPs may serve as “communication coaches” to physicians by providing the verbiage and analogies that are best comprehended by the patient. DSPs need to communicate clearly the extent to which they know the patient in domains relevant to health and health care. DSPs need to ensure that all of the patient's and care providers' concerns are addressed during the encounter, or alternatively, explicitly place unattended items on the agenda for future health care appointments. DSPs should not leave the office without clearly understanding the patient's health status and how to implement the health care plan. They need to recognize that high-quality health care necessitates full understanding of the patient's health status and the health-care plan.

Following the health care encounter, DSPs play an important role in implementing health care plans, especially ones that are incorporated into Individual Service Plans. As elucidated in a qualitative study summarizing perspectives from community agency administrators, DSPs, family members, and adults with IDD, DSPs play a pivotal, complex, and at times unclear role in promoting healthy behaviors of persons with IDD (Leser et al., 2018).

Residential service providers should develop competency-based DSP training that systematically fosters the skills necessary for DSPs to provide the guidance, support, and advocacy required for optimum health care. Such trainings would be most effectively delivered in tandem with those whom the DSPs serve (Bogenschutz, Nord, & Hewitt, 2015; van Oorsouw, Embregts, Bosman, & Jahoda, 2009). Post-encounter written instructions alone are insufficient to ensure that the health care plan is understood and implemented. A cost-free, web-based instructional DVD explaining DSP roles in health care as coach, interpreter, and role model is Module 2: “Fostering Communication Between People With Disabilities and Doctors” from a three-set DVD entitled “Optimizing the Primary Care of Individuals With Intellectual and Other Developmental Disabilities: Everyone Is Important” (Tyler, 2011). As DSPs advance in their own health literacy through workplace training, they can readily apply these same skills to the context of their own and their families' health care.

Similarly, people with IDD need explicit training in accessing health care, communicating symptoms, self-advocating in health care environments, and implementing health-care plans. These skills need to be learned as part of transition from pediatric to adult health-care environments, and further advanced as new health conditions and health needs arise (Institute of Medicine, 2007).

Study Limitations

Most of the study limitations were consequences of study design decisions intended to maximize the anonymity of the DSP respondents. We did not track the numbers or characteristics of health-care encounters for which DSPs did not complete surveys. Similarly, we do not know the number of surveys describing different health encounters that were completed by the same DSP. Despite the reassurances regarding anonymity, it is possible that DSPs answered questions in a fashion they believed would appear more favorable to their supervisors, (e.g., reporting higher confidence in understanding the patient's health status and in their ability to communicate the health-care plan).

Most of the residential service providers participating in this study were large agencies employing several hundred DSPs serving in urban and suburban communities. DSPs serving smaller agencies or in rural communities may have different experiences providing health-care support and differing opinions regarding health-care quality.

The survey was carefully designed by a multi-stakeholder group comprised of self-advocates, family members, residential service providers, and health professionals, and pilot testing was conducted with DSPs leading to a revised final version. However, psychometric analysis of the survey was not conducted.

Conclusion

DSPs serve a vital role in accessing and supporting health care of persons with IDD. Their insights provide a window into how health care is delivered to their patients and enlightens how that care might be improved. Through competency-based training, and as active and informed participants in the health care of their patients, DSPs have the potential to serve as change agents to improve the quality of health care provided to people with IDD.

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Author notes

The authors gratefully acknowledge the assistance of Shaina Rood BA, MPH, DO (c) for her assistance in manuscript revisions.

This publication was made possible by the Practice-Based Research Network Shared Resource of the Clinical and Translational Science Collaborative of Cleveland, UL1TR000439 from the National Center for Advancing Translational Sciences (NCATS) component of the National Institutes of Health and NIH Roadmap for Medical Research. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the NIH.

Developmental Disabilities - Practice-Based Research Network: Linda A. Council, MSN, BSN, RN, Notre Dame College, Division of Nursing; Benitha S. Garrett, MSN, BSN, RN, Nurse Manager, Koinonia Homes, Inc.; Gail McPeake, BSN, RN, Director of Clinical Services, Koinonia Homes, Inc.; Amy Hook, Self-Advocate; Lauri L. Livingston, North Region Director, ViaQuest Residential Services; Cynthia Norwood, Executive Director, The Arc of Greater Cleveland; Patricia Otter, President & CEO, UCP of Greater Cleveland; Dan Rice, Executive Director, Help Foundation; Barbara Sapharas, Independent Consultant, Board Member-Sibling Leadership Network; Anne Teubl, RN, CDDN, Director of Nursing, Welcome House, Inc.; Tony Thomas LISW-S, ACSW, Executive Director, Welcome House, Inc.; Mary K. Ziccardi, BS, Regional Director, REM Ohio, Inc.; Catherine A. Patton, BSN, RN, Community Outreach, Cleveland Clinic

PBRN Shared Resource at Case Western Reserve University: Maureen Riley-Behringer, Ph.D.; Jeanmarie C. Rose, MPA.

Poster Presentation: Perspectives of Direct Support Professionals on Healthcare Quality and Processes. June 30, 2015. North American Primary Care Research Group PBRN Annual Meeting, Bethesda, MD.