Direct support professionals (DSPs) play a large social role in the lives of people with developmental disabilities (DD) and have the potential to influence their health behaviors. Six qualitative focus groups (n = 48) were conducted with DD community agency administrators, DSPs, family members and adults with DD to better understand the perceived role of DSPs in the health promotion efforts of those with DD. Findings from this study suggest that DSPs experience several barriers when trying to promote the health of those with DD, one of which is fear of violating the rights of people with DD. Future work should identify ways to overcome the barriers experienced by DSPs, so that they can better assist people with DD with health promotion efforts.
People with developmental disabilities (DD) experience disparities in their health when compared to members of the general population (Morin et al., 2012; Reichard & Stolzle, 2011). Current literature suggests that adults with DD are more likely to suffer from chronic health conditions such as, diabetes and heart disease, than those without disabilities (Draheim, 2006; Reichard & Stolzle, 2011). People with DD have even been shown to develop heart disease at earlier ages than those without DD (Day et al., 2005; Draheim, 2006; Morin et al., 2011; Reichard & Stolzle, 2011; Sohler et al., 2009). Reichard and Stolzle (2011) compared the prevalence of diabetes between adults with cognitive disabilities and those without and found that adults with cognitive limitations had significantly higher rates of diabetes than those without cognitive limitations, 19.4% vs. 3.8%, respectively. In addition, this same study found that adults with cognitive limitations and diabetes were significantly more likely to suffer from chronic conditions such as asthma, arthritis, heart disease, high blood pressure, stroke, and high cholesterol.
It is well established in the literature that the use of tobacco products, eating a poor diet, and being physically inactive are all modifiable behaviors that contribute to chronic health conditions; however, the literature is just recently starting to describe the health behaviors of adults with DD. In one recent study, Havercamp and Scott (2015) noted that adults with DD were more likely to be obese and much less likely to participate in physical activity than people without disabilities. This same study noted that adults with DD were less likely to smoke than people with other types of disabilities and people without disabilities; however, in the past, adults with DD were thought to smoke at similar rates as members of the general population (Havercamp, Scandlin, & Roth, 2004).
The term direct support professional (DSP) is a term used to describe the group of paid workers who provide care services to those with DD. Research has suggested that DSPs play a large role in the social lives of the people they support, and that people with DD may form strong emotional attachments to their providers and often view them as role models and peers (de Schipper & Schuengel, 2010; Hewitt & Larson, 2007).
While we know that adults with DD experience higher rates of chronic conditions than members of the general population, very little is known about the behavioral factors that contribute to these chronic conditions. The literature has consistently shown that one's social environment can influence one's health (e.g., Flay et al., 1994; Hendy & Raudenbush, 2000; Maitland, Stratton, Foster, Braham, & Rosenberg, 2013; McAlister, Perry, & Parcel, 2008). Because DSPs make up such a large part of the social networks of adults with DD, it makes sense to explore the influence that DSPs have on the health behaviors of those they support.
Constructs from Social Cognitive Theory can help provide a framework for better understanding the role DSPs play in the lives of people with DD. Research has suggested that the concept of role-modeling, where people learn from those around them, has consistently been shown to impact health behaviors such as diet, physical activity, and tobacco use (McAlister, Perry, & Parcel, 2008). In addition to role-modeling, the use of rewards or punishments, known as incentive motivation, has been shown to influence health behaviors, particularly in the childhood obesity literature (Birch, 1999). Finally, the concept of reciprocal determination suggests that an individual's environment helps to shape his or her behavior and that an individual can help shape his or her own environment as well (Bandura, 1986). However, some populations, such as adults with DD, may lack control over their own environments; others, such as DSPs, may play a large role in shaping the home environments of people with DD.
The purpose of this study was to qualitatively explore how DD community agency administrators, DSPs, family members, and adults with DD define “health” for people with DD, as well as how they perceive the role of DSPs in the health promotion efforts of the individuals they serve. In addition, a goal of this study was to understand the barriers to health promotion for people with DD and the ways to overcome these barriers.
This study was approved by the university's Institutional Review Board (IRB). Study participants had to be adults (18 and older), who were: DD agency administrators, DSPs, family members, or persons with DD. Participants were recruited via email. Local disability organizations hung recruitment flyers and emailed recruitment invitations to their members. The researcher emailed recruitment invitations to a list of DSPs taken from the state's Department of Developmental Disabilities website. Participants who were interested in the study contacted the researcher to register for the study. Once registered, participants received directions to the study site via email and a reminder call the day before the focus group. Participants provided informed consent. Prior to providing their informed consent, participants who were adults with DD, completed a capacity assessment to determine their understanding of the research study. All adults with DD in the study were their own guardians.
Six focus groups were conducted with a total of 48 participants. One focus group was held with adults with DD (n = 6), one focus group was held with agency administrators (n = 10), two focus groups were held with family members (n = 17) of adults with DD, and two focus groups were held with DSPs (n = 15). The focus groups were held in private conference rooms at local disability organizations.
The focus group discussion facilitator followed a scripted interview guide. All focus groups were audio recorded. Discussions lasted an average of 75 minutes and participants received a $25 gift card to a local retailer for participation in the study. Participants were asked to fill out a brief demographic questionnaire (e.g., age, gender, race, affiliation with the DD community) after the focus groups ended.
Two qualitative focus group guides were developed: one for the discussions with family members, agency administrators, and DSPs; and the second for adults with DD (Figure 1). The focus group question guides were developed and organized based on specific theoretical health behavior concepts (e.g., role-modeling, barriers, facilitating factors).
Grounded Theory was used as the theoretical framework for qualitative data analysis. Focus groups comments were transcribed verbatim by the researcher. The transcripts were initially read to get a general overview of the data; each member of the team (the researcher and two trained research assistants) independently coded the text using an open coding method. Each unit of text was given a primary code, and if necessary, a secondary code. Once the research team reached consensus on coding, codes were categorized into thematic areas.
Table 1 contains the demographic characteristics of focus group participants. A total of 48 participants participated in six focus groups. The average age of participants are as follows: DSPs (43.6 ± 13 years), family members (50.8 ± 14 years), adults with DD (69.3 ± 3 years), and agency administrators (50.9 ± 11years). Among all groups, except for agency administrators, the majority of participants were female: DSPs (80%), family members (76.5%), adults with DD (66.7%) and agency administrators (50%). Participants were from a variety of different racial backgrounds: DSPs (Black-60.0%, Hispanic-7.1%, White-26.7%, Other/refused-7.1%), family members (Black-5.9%, Hispanic-0.0%, White-76.5%, Other/refused-17.7%), adults with DD (Black-33.3%, Hispanic-0.0%, White-66.7%, Other/refused-0.0%), and agency administrators (Black-30.0%, Hispanic-10.0%, White-50.0%, Other/refused-10.0%). The participants also had varying levels of education: DSPs (less than high school-0.0%, high school-13.3%, some college-60.0%, college degree or higher-26.7%), family members (less than high school-0.0%, high school-23.5%, some college-17.7%, college degree or higher-47.1%), adults with DD (less than high school-83.3%, high school-16.7%, some college-0.0%, college degree or higher-0.0%), and agency administrators (less than high school-0.0%, high school-0.0%, some college-10.0%, college degree or higher-90.0%). DSPs in the study worked an average of 12.1 ± 8 years in the field of direct care, while agency administrators worked an average of 17.3 ± 15 years in the field.
The following findings presented are organized based on the themes that emerged from the six focus groups.
Defining health among people with DD
Participants noted that there is no one single definition of health that is applicable to all people with DD because of the individualized needs and differences within the population. Even though “being healthy” has different meanings for all people with DD, the general consensus among focus group participants was that in order for people with DD to achieve good health, they need to eat a healthy diet, be physically active, and be in a good state of mental/emotional health. In addition to the physical and emotional components of health, participants noted that for people with DD, “being healthy” means having as much independence and control over their lives as possible (Table 2).
Role of DSPs in health promotion
In general, participants viewed the basic responsibility of DSPs as keeping those they support with DD safe, while successfully implementing their Individualized Service Plans (ISPs). In addition, many participants indicated that DSPs were responsible for providing the people they support with social interactions, as a way to promote emotional health and well-being. However, participants had different opinions in regards to how much of a role DSPs should have in promoting the healthy behavioral choices of the people they support related to diet and physical activity. Some participants thought that DSPs actively make choices for the person they support, while others thought that making healthy or unhealthy behavioral choices should be left to the person with DD (Table 3).
Barriers to health promotion
Participants discussed the general importance of being healthy for adults with DD; however, several barriers to achieving good health were noted. The barriers to health promotion described during the focus groups can be organized into (a) individual-level factors of the person with DD (e.g., personal preferences, rights); (b) individual-level factors of the DSP (e.g., motivation, rights); (c) interpersonal factors between the person with DD and the DSP (e.g., role-modeling, use of rewards); and (d) organizational factors (e.g., turnover among DSPS, unenforceable policies).
Individual-level (Person with DD)
Even though having autonomy over their own lives was noted as contributing to the overall health of people with DD, it was also brought up as a major concern that participants had about the health of people with DD. Participants noted that some people with DD, just like anyone else, may have personal preferences for or against certain health-promoting behaviors such as being physically active or eating a healthy diet. Due to these personal preferences and concern over violating the rights of the people they support, participants noted that it can be difficult at times for DSPs to promote health. In general, DSPs reported a general fear over doing anything that could be perceived as violating rights; while some family members and agency administrators noted that DSPs could be doing more to promote the health of the people they support. It was also noted that adults with DD often live on fixed incomes, which may impact their ability to afford to purchase healthy foods. Some participants also suggested that people with DD may also have medical conditions or physical limitations that impact their ability to make healthy lifestyle choices (Table 4).
Participants consistently noted that some DSPs may have a general lack of motivation/interest in helping people with DD practice to be healthy. In addition, some DSPs indicated that they have rights themselves (e.g., being able to eat what they want), which should not be violated while they are working (Table 5).
Interpersonal-level (Relationship between DSPs and those they support)
Participants described DSPs as peers and role models for the people with DD they support. In addition, it was noted that DSPs have a lot of power/influence over the daily activities of the people they support. It was also noted that some DSPs may use food-based rewards to get the people they support to do something (Table 6).
Participants discussed how high turnover rates in the field of direct care lead to a lack of continuity in the care provided to people with DD. Participants noted that it might be difficult for organizations that employ DSPs to have rules or policies regulating DSPs' health behaviors because the rules are not always enforceable when the care is being provided in someone's home and because all people with DD are uniquely different (Table 7).
Strategies for overcoming barriers to health promotion
Even though several barriers to health promotion for people with DD who receive direct support services were noted, focus group participants also provided potential strategies for overcoming these barriers. One of the most cited strategies for encouraging DSPs to promote the health of people with DD was to place health-promotion goals in ISPs. In addition to adding health goals to ISPs, participants also recommended that the organizations that employ DSPs should offer more health-focused educational training opportunities for DSPs and people with DD. Even though the concept of role-modeling unhealthy behaviors was cited as a common barrier to health promotion, participants indicated that role-modeling healthy behaviors could have a positive impact on health. It was also recommended that DSPs try to provide social support to the adults with DD they serve and use creative strategies to help people with DD make healthy choices, while at the same time recognizing and respecting their rights (Table 8).
This is the first study to explore the perceived role of DSPs in the health-promotion efforts of people with DD from the perspectives of agency administrators, DSPs, family members, and adults with DD. Recently, the literature has called attention to the importance of DSPs in the lives of the people with DD they support, suggesting that DSPs serve as key members of the social networks of people with DD (de Schipper & Schuengel, 2010; Dodevska & Vassos, 2013; Hewitt & Larson, 2007). Results from this study echo previous work in the area by suggesting that adults with DD view their DSPs as role models (de Schipper & Schuengel, 2010; Humphries, Traci & Seekins, 2009). The findings from this study help to clarify the ways in which DSPs can be more involved in health-promotion efforts, while recognizing the barriers to promoting health among adults with DD.
When asked to describe what “being healthy” means for people with DD, participants offered a variety of responses including eating right/exercise, being emotionally/mentally well, and having control over their lives. These definitions of health illustrate that there are different views about health, which sometimes conflict with each other. For instance, having control over their lives was cited as a way in which people with DD can be healthy, which may not always align with eating healthy/exercising should a person with a DD choose to participate in unhealthy behaviors. Since both autonomy and healthy eating/exercise were noted as ways in which people with DD can be healthy, it is important for people with DD to receive encouragement and support from members of their social networks to make healthy choices. Participants also reported that DSPs should promote health by ensuring safety, following ISPs, and providing the people they support with social interactions. However, participants reported mixed feelings about the role of DSPs in helping those they support make healthy choices, mainly due to concern over the potential for rights violations. Several participants noted that DSPs may want to help people make healthy choices, but that, ultimately, the choice to make healthy decisions has to be left to the person with DD. The concern over violating rights is valid, as the disability field has emphasized the importance of protecting the rights and promoting self-determination for people with DD over the past several decades (Bannerman, Sheldon, Sherman, & Harchik, 1990). However, it must be recognized that people with DD may lack the cognitive ability to make fully informed health decisions as a result of their disability; therefore, efforts should be made by their support networks to encourage healthy behavioral practices (especially due to the high rates of chronic conditions within the population). Aside from the concern expressed over violating the rights of people with DD, other barriers to health promotion were noted such as DSPs' motivation to promote the health of those they support, role-modeling unhealthy behaviors, and using unhealthy rewards. In addition, more systemic barriers to health promotion were noted such as a general lack of training for DSPs on health-related topics and high turnover rates in the field of direct care.
Focus group participants offered several creative strategies that DSPs could use to support and encourage healthy behavioral practices without violating any rights of people with DD. Role-modeling healthy behaviors in front of the people they support, including health promotion goals into ISPs, showing interest towards health promoting behaviors, receiving training, and helping people with DD choose healthier food options, were all suggested as strategies that DSPs could use to promote the health of those with DD.
Participants discussed the concept of role-modeling as both a potential barrier to health promotion and a potential facilitator of health promotion, depending on whether the behavior being modeled by the DSP was healthy or unhealthy. The discussion of role-modeling in this study is consistent with previous literature that suggests that members of one's social network can influence an individual's health behaviors; however, previous studies have not yet emphasized the importance of role-modeling healthy dietary/physical activity behaviors to people with DD (Flay et al., 1994; Go, Green, Kennedy, Pollard, & Tucker, 2010; Hendy & Raudenbush, 2000; McAlister, Perry, & Parcel, 2008).
Many participants in this study consistently stated that one of the best strategies for encouraging DSPs to become more involved in the health promotion efforts of people with DD was to include a health promotion category as a goal in ISPs (a document typically viewed as a legally binding contract between the service organization and the person with DD receiving services; Reinders & Schalock, 2014). This finding is consistent with recent research that suggests that food choices and healthy living goals should be explicitly stated in an individual's care plan (Cartwright, Reid, Hammersley, Blackburn, & Glover, 2015). Participants in this study indicated that if health promotion goals were included in the ISP, then DSPs would have no other choice but to follow the ISP, because following the ISP is part of a DSP's job responsibilities.
In addition to including a health promotion goal in ISPs, participants noted that more health-related educational training opportunities are needed for the direct support workforce. Research has suggested that trainings for DSPs often focus on safety and handling aggressive client behaviors (Cox, Dube, & Temple, 2014). As a strategy for health promotion in the current study, participants recommended that both people with DD and DSPs should attend health-related educational trainings together; previous research has shown that trainings for DSPs are the most effective when the person they support is included (Bogenschutz, Nord, & Hewitt, 2015; van Oorsouw, Embregts, Bosman, & Jahoda, 2009).
The primary limitation of this study is that the sample size for the focus groups was small with 48 total participants. Only one focus group was held with people with DD and only one was held with agency administrators; therefore, researchers could not know if a saturation of themes occurred in these groups. Another potential limitation of this study, was that the average age of the adults with DD was close to 70 years, therefore, younger adults with DD were not represented in this study. Even though multiple local disability service organizations participated in the study's recruitment efforts, only adults with DD from one of the organizations called to register for the study, which is noted as potentially introducing bias to the study results, as there are likely differences in age, cognitive impairment, and support services received between those with DD who called to register for the study and those who did not. Additional time was given to recruit adults with DD from different disability organizations, but to no avail. In addition, demographic information about the living environments (e.g., alone or with family) of the adults with DD who participated in this study was not collected; this is a noted limitation of the study because research has suggested that living environment is associated with varying health outcomes for people with DD. Finally, as with all qualitative work, the findings are not fully generalizable to the entire population of people with DD, but rather only to those who took part in the research (Salazar, Crosby, & DiClemente, 2006).
Conclusions and Future Directions
The findings from this study suggest that DSPs have a role in the health promotion efforts of people with DD, as well as the potential to influence health behaviors both positively and negatively through role-modeling. Future research should explore the relationship between the health behaviors of DSPs and those with DD. In addition, a future study should be conducted to examine the difference in health behaviors of people with DD who have health promotion goals added to ISP plans vs. those with standard ISP plans. Should the addition of health promotion goals prove to be effective, targeted research will be needed with people with DD and their guardians and care-team members to better understand the best action steps to take in order to get health promotion goals included as standard policy in ISPs. Organizations that employ DSPs should consider implementing relevant trainings on the topic of health promotion for people DD; these trainings should not only provide education about the importance of health promotion for people with DD, but also provide strategies for overcoming the barriers (e.g., individual preferences of person supported, limited incomes) to promoting their health. Overall, the findings from this study outline some core action steps organizations that employ DSPs and care-team coordinators should consider in order to promote the health of people with DD receiving support services.
No external funding was received for this study—it was part of a dissertation research project funded by internal funds.