Establishing Best Practices in Telehealth Care for Adults with Developmental Disabilities in the United States: An e-Delphi Study

Abstract

Background:

Telehealth care is now a key element of mainstream health care since the COVID-19 pandemic, with all types of health care providers joining the digital revolution. As a population experiencing health care disparities, adults with developmental disabilities and their supporters have described variable experiences with telehealth care that contribute to overall care quality and health outcomes.

Methods:

This e-Delphi study established consensus on best practices in telehealth care for adults with developmental disabilities in the United States. Online surveys and videoconferencing interviews were conducted with 44 expert panelists with experience with telehealth care and developmental disabilities, including adults with developmental disabilities, family members, direct support professionals, nurses, and health care providers.

Results:

Three rounds of surveys resulted in a set of 9 guidelines consisting of 42 items. The guidelines addressed 1) appropriate situations for telehealth care, 2) communication needs and preferences, 3) support person collaboration, 4) education and anticipatory guidance, 5) reminders, 6) coordination of care, 7) equitable and fair access, 8) privacy and safety, and 9) evidence-based practice.

Conclusion:

Health care providers can adopt these best practice guidelines to ensure telehealth care is provided equitably and safely to adults with developmental disabilities. Policy advocacy is needed for the uptake of these guidelines and for health care providers and adults with developmental disabilities to access the resources needed for safe and effective telehealth care use.

Introduction

Telehealth care is likely to remain a significant mode of health care delivery for people with disabilities in the postpandemic era. ¹ The terms telehealth, telemedicine, and virtual care are often used synonymously, representing health care that is delivered via technology by a health care provider without an in-person office visit. ² People with developmental disabilities, representing approximately 4.5 million individuals in the U.S., ³ have been historically disadvantaged in the U.S. health care system and society at large. ⁴ Developmental disabilities are the result of physical or mental conditions that significantly impact major life activities and require lifelong services or supports. ⁵ Intellectual disability, attention deficit hyperactivity disorder, autism spectrum disorder, and cerebral palsy are some of the most common developmental disabilities in the U.S. ⁶ People with developmental disabilities experience health care disparities and poorer health in comparison with people without disabilities. ⁷ Ensuring the accessibility, safety, and effectiveness of telehealth care is imperative to improve health outcomes for people with developmental disabilities.

Most research related to telehealth care and people with developmental disabilities has focused on children. However, differences in living situations and services for adults with developmental disabilities limit the generalizability of studies about children to the adult population. Research specific to adults has focused on specialized telehealth care services for adults with developmental disabilities, reporting successful outcomes. ² However, since the COVID-19 pandemic, mainstream health care providers also use telehealth to provide health care.

Potential benefits of telehealth care for adults with developmental disabilities include lower costs, elimination of transportation barriers, improved access to specialists, less exposure to communicable diseases, and reduced emergency department utilization. ⁸ However, financial barriers to purchase and maintain internet service and needed devices and privacy and data security concerns given the population's high risk for abuse and victimization may negate benefits. ^8,9 Challenges with digital literacy and operating the technology are also prevalent barriers. ^2,10 Furthermore, reports of telehealth care utilization by providers based solely on disability status raise equity concerns. ¹¹ Kim and colleagues found that people with developmental disabilities had 56% more telehealth encounters than their peers with similar health conditions without developmental disabilities during the pandemic. ¹²

The development and dissemination of best practice guidelines for telehealth care for adults with developmental disabilities are needed to help to promote consistent high quality telehealth care and outcomes. The Association of American Medical College (AAMC) Telehealth Competencies address equity and access issues yet lack explicit recommendations for engaging with people with disabilities. ¹³ A systematic review conducted in 2023 of best practice guidelines for the provision of virtual care revealed no best practice guidelines for telehealth care of people with disabilities. ¹⁴ The American Telemedicine Association (ATA) catalogs best practice telehealth guidelines and resources for a number of contexts and conditions. ¹⁵ However, access to these resources is limited to members of the ATA, which can be cost prohibitive, and no guidelines or resources are listed that are specific to telehealth care of people with disabilities. As a result, there exists an urgent need to support health care providers with the knowledge and skills necessary to provide high-quality telehealth care to adults with developmental disabilities.

Although there may be commonalities with the needs of the broader population of people with disabilities, a narrow focus on adults with developmental disabilities is necessary to assure that their specific needs are not missed. This is especially important given the devastating impact of COVID-19 in terms of mortality for this population. ¹⁶ Moreover, adults with developmental disabilities have a unique context of services and supports and have faced historic maltreatment and discrimination in comparison to adults who acquire disabilities later in life. ⁴ Therefore, this research aims to articulate best practices for telehealth care with adults with developmental disabilities to improve health equity and care outcomes.

Methods

STUDY DESIGN

A classical e-Delphi technique was used to identify consensus on best practices in telehealth care for adults with developmental disabilities. ¹⁷ The Delphi study design uses a series of surveys administered in rounds to achieve consensus on a topic from a panel of experts. ¹⁷

The Delphi process consisted of three survey rounds, all of which were administered via Qualtrics online survey software between September 2022 and April 2023. ¹⁸ For the first round, we asked 12 open-ended questions about considerations for telehealth care of adult with developmental disabilities. The development of the open-ended questions was guided by the AAMC Telehealth Competencies and the experiences of research team members. ¹³ The team included three PhD-prepared nurse researchers specializing in the field of developmental disabilities nursing, two of whom are parents of persons with developmental disabilities and have personal experience with their telehealth care. The nurse researchers previously collaborated on studies that provided key insights by nurses about their experiences supporting people with developmental disabilities with telehealth during the COVID-19 pandemic, providing the impetus for the present study. ¹¹ The team also included two research team members with developmental disabilities and professional experience as certified autism peer specialists to ensure all aspects of the study were relevant, acceptable, and understandable to people with developmental disabilities.

In the second round, we presented 12 draft best practice items to panel members and asked them to rate their level of agreement with each item on a 5-point Likert scale, from “1-Strongly Agree” to “5-Strongly Disagree.” A free-text entry box was provided for narrative feedback about each item. Based on panelist feedback, the 12 draft best practice items were revised and reorganized, resulting in a set of 9 best practice guidelines with 42 subitems, in plain language and health care professional versions. Both were reviewed by the research team to ensure consistency in meaning between the versions. In the third round, we presented the revised set of guidelines and asked panelists to rate their level of agreement with only the revised items, using the same 5-point Likert scale. Health care professionals reviewed the health care professional version, and all other expert panelists reviewed the plain language version. For all three rounds, the research team members with developmental disabilities reviewed panelist feedback and participated in the revision of items with an equity lens to ensure that the consensus process did not erase minority perspectives that were relevant to the purpose of the study.

EXPERT PANEL

A panel size of 10 to 12 experts is the generally accepted minimum sample size for Delphi studies for clinical practice guideline development. ^19,20 Though sample sizes for Delphi studies vary widely, diminishing returns have been noted with large sample sizes. ^19,20 Research comparing the data of a panel of 23 experts with data from bootstrapped samples of 1000 and 2000 iterations demonstrated stability of responses across all three groups, indicating little benefit from larger samples. ²¹ Therefore, we aimed to recruit a panel of at least 30 participants, to ensure adequate representation of experts (at least 5) from each group: adults with developmental disabilities, family members, direct support professionals, nurses, and health care providers. Inclusion criteria included: 1) aged 18 years or older, 2) communicates in the English language, and 3) has experience with telehealth care and adults with developmental disabilities. Purposive sampling was used to identify potential panelists through emails and newsletter blurbs of professional organizations, including the Alliance for Disability in Health Care Education, the American Academy of Developmental Medicine and Dentistry, The Arc, the Developmental Disabilities Nurses Association, and a specialist telehealth care provider service for people with developmental disabilities, StationMD. After applying inclusion criteria to those who expressed interest, we invited 69 panelists to participate, anticipating a response rate of approximately 50% based on previous research in the field of developmental disabilities. ¹¹

ETHICS

This research was approved by the University of Massachusetts Dartmouth. All panelists provided informed consent to participate by reviewing the study information and clicking “Yes” on the first page of the online survey. The principal investigator met individually via teleconference to assess adequate understanding for informed consent prior to the first round of the survey with panelists who identified as adults with developmental disabilities.

DATA ANALYSIS

We used content analysis to analyze Round 1 data and to group and condense similar statements into best practice items, as per the procedures for Delphi research. ^17,22 In Rounds 2 and 3, descriptive statistics were used to establish consensus, which was set a priori at greater than or equal to 70% of panelists rating “agree” or “strongly agree” for each item, a criterion successfully used as a consensus threshold in previous Delphi research studies. ^17,23 SPSS version 28 was used for statistical analyses. ²⁴

Results

A total of 44 experts completed Round 1 out of the 69 total who were invited. Of those who completed Round 1, 86% completed Round 2 and 82% completed Round 3. This exceeds the 70% response rate established as necessary to maintain rigor and minimize bias in Delphi studies. ¹⁷ The panel composition was relatively evenly distributed by expert type: adult with developmental disability (n = 10), family member (n = 11), direct support professional (n = 9), nurse (n = 8), and health care provider (n = 10). Some experts belonged to more than one group, for example, nurses who were also mothers of children with developmental disabilities, and one adult with developmental disabilities who worked as a direct support professional. All items presented in Round 2 reached consensus. However, item feedback suggested revisions and additional items. Therefore, we drafted a revised set of guidelines for Round 3, consisting of 9 items with 42 subitems, and asked panelists to rate their level of agreement with only the new or revised items. All assessed items reached consensus in Round 3. The health care professional version of the best practice guidelines is presented in Table 1. The plain language version is included in the online Supplementary Data S1.

Discussion

This e-Delphi study sought to establish consensus on best practices in telehealth care for adults with developmental disabilities. We used a participatory approach with a diverse expert panel of adults with developmental disabilities and family members, direct support professionals, nurses, and health care providers. Nearly all experts offered comments about the importance of telehealth care for this population to reduce barriers to health care access. Experts agreed that telehealth care for adults with developmental disabilities must be person centered, with assessments and interventions targeting the person's expressed needs, preferences, and goals of care. This is in line with the overarching theme of “one size does not fit all,” identified in a qualitative study about virtual primary care of adults with developmental disabilities during the COVID-19 pandemic. ²⁵

Whether health care providers or the persons with disabilities and their family members held the onus of decision making for choice of telehealth care versus in-person care was debated. Family members identified that there is no “choice” when behavioral challenges or immune system impairments threaten health with in-person care. Health care providers, however, identified the need to make resource allocation decisions and ensure safe and effective care delivery for all clients. Given these differences in expert panelist decisions, in the final guidelines, Guideline 1 reflects a collaborative approach in which a person’s needs and preferences should guide decisions about use of telehealth care, to the extent possible, with consideration of issues of safety and effectiveness. This is in alignment with recommended telehealth competencies established by the AAMC pertaining to the domains of patient safety and access and equity and with the recommendations for patient selection identified in a systematic review of virtual care guidelines. ^13,14

Elements of these best practice guidelines are applicable to other populations of people with disabilities. This is not surprising given the wide scope of disability types represented within the developmental disability label, inclusive but not limited to intellectual, vision, hearing, language, and mobility. A narrative review of how telemedicine can improve the quality of care of patients with dementia recommended practices to improve care that were also identified in the present study: use of telehealth care to reduce high infection risks with in-person care, to overcome transportation barriers and safety concerns, to triage the need for emergency department visits, and to provide the opportunity for caregivers physically separated from the person to participate in health care. ²⁶ Similar needs were also identified, such as improving digital literacy and access to technological equipment, internet services, and technical assistance. ²⁶

Best practices in videoconferencing-based mental health also share areas of similarity with the present study’s findings, for example, the need to comply with existing legal and ethical policies, including informed consent and culturally appropriate care. ²⁷ Guidelines relating to emergency procedures, such as knowing the person’s location and immediate contact persons, identifying and collaborating with a support person if needed, ensuring a private environment, and conducting an individualized assessment of the appropriateness of telehealth care to meet the person's needs are key areas of overlap. ²⁷ Of note, the locus of decision making for tele-mental health care was identified as at the discretion of the provider, without mention of the person's preferences or choice. This contrasts with the present study findings in which the person’s needs and preferences guide telehealth care decisions, to the extent that both options are equally safe and effective according to the provider’s discretion based on an individualized assessment. This emphasis on choice reflects the focus on self-determination as a guiding value for services and supports for adults with developmental disabilities. ²⁸

Many of the design, implementation, and policy considerations identified in the present study are similar to those articulated for the broader population of people with disabilities. ²⁹ Such considerations include compatibility with assistive technology, use of user-centered design, offering choice of communication methods, and the ability to include multiple individuals to join the telehealth encounter if assistance of a support person or translator is needed. Access to internet, telehealth technology devices, and training, as well as assurance of equity in telehealth care services, are also areas of agreement. ²⁹ Given the commonalities in best practices in telehealth care for adults with developmental disabilities with broader disability populations, such as people with cognitive and communication disabilities, future research and policy collaboration is warranted.

The best practice guidelines articulated in this study address the specific needs of adults with developmental disabilities as informed by the experiences of adults with developmental disabilities themselves. Therefore, their advantage lies in the relevance and acceptability of the guidelines to adults with developmental disabilities and their supporters. This is especially important given the historic maltreatment of adults with developmental disabilities and the health inequities they experience that persist to the present day. These developmental-disability specific guidelines offer several other concrete advantages. First, they clearly articulate the autonomy-supportive role of the support person in the telehealth encounter, as contrasted with that of the typical caregiver role. ³⁰ Second, key elements of a safe, disability-inclusive telehealth care environment for adults with developmental disabilities are identified and the importance of a trusting patient provider to safety of telehealth care for adults with developmental disabilities is highlighted. This relationship-based focus is consistent with the foundation of the developmental disability nursing specialty. ³¹ Third, the fact that the guidelines specifically address abuse and neglect reflects sensitivity to the epidemic of sexual abuse among people with intellectual disabilities, who are sexually assaulted at a rate seven times higher than people without disabilities and whose abusers are likely to be someone known to them. ³² Lastly, the guidelines reflect a neurodiversity-affirming perspective of supports and accommodations as a human right. ³³ Such supports include providing reminders and instructions in advance, using clear and literal plain language, and valuing the lived experience and expertise of the person with developmental disability and their supporters. ³³

The study is not without limitations. First, as identified by others conducting similar research with the older adult population, best practice guidelines are not operationalized, nor do they provide a roadmap for implementation. ³⁴ The ability of health care providers and organizations to fully adopt these guidelines will depend on the local resources available and ultimately, policy advocacy. A second limitation is the cross-sectional data collection strategy which captured expert panelists perspectives in brief, 7-month timeframe. Given the dynamic nature of the healthcare system and rapid pace of technological change, these guidelines will need to be updated periodically to address changes in the telehealth care environment. Also, data collection immediately following the height of the COVID-19 pandemic may have resulted in negative opinions about telehealth care that reflected experiences with health care providers who were new to telehealth care and still learning about its optimal use. A third limitation of the study is that health care professionals and family members comprise the majority of expert panelists. This Delphi study sought to identify areas of consensus across different expert groups and is not intended to fully represent the experiences of telehealth care for adults with developmental disabilities. Future research eliciting the perspectives of adults with developmental disabilities about telehealth care is needed to ensure that the voices of adults with developmental disabilities are strongly heard.

A key strength of the study is the inclusion of adults with developmental disabilities on the research team and as expert panel members. Two research team members with developmental disabilities were full, compensated members of the research team, involved with every phase of the study from conceptualization to dissemination. This is in line with the inclusive research movement that seeks to meaningfully involve people with developmental disabilities in research, to ensure it meets their needs and priorities and is disseminated in a way that impacts and benefits them. ^35–36 The production of a plain language version of our best practice guidelines in collaboration with adults with developmental disabilities exemplifies this approach, as does our plan to make the guidelines freely available on several websites to those outside the scientific community.

CONCLUSIONS

Telehealth care offers promise for expanding access to health care for hard-to-reach populations. It is essential that telehealth care is delivered in a manner that improves health outcomes and does not contribute to the many health disparities experienced by adults with developmental disabilities. Adoption of these best practice guidelines will promote equitable, safe, and effective telehealth care that reflects the specific needs of this population.