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DOl: 10.1352/1934-9556-52.2.112
Family Experience in a Regional Participant Contact Registry for Research on Intellectual Disability Frances A. Conners, B. Allyson Phillips, Jennifer D. Rhodes, and James C. Hamilton
Abstract Participant recruitment is one of the most significant challenges in research on intellectual disability (ID). One potential solution is to develop a participant contact registry, which allows the researcher to contact participants directly rather than recruiting through multiple schools or service agencies. The authors describe the development of one such registry and results of a survey of registry families. Results suggest that families joined the registry to help others, they hope research in the ID field improves the daily lives of individuals with ID and their families, and they find research participation to be a positive experience. However, logistic concerns can be an important barrier to their research participation, and they would like more information about the research study both before and after participating. Key Words:
participant recruiting; research participation; participant contact registry; family perspectives
One of the greatest obstacles to research in the field of intellectual disability (ID) is reliable recruitment of research participants. Several researchers have described the unique challenges of recruiting participants with ID for research studies. These challenges include access to the participants, the demands of daily life faced by this population, and the complexities of the consent process for this population (Becker, Roberts, Morrison, & Silver, 2004; Iacono & Murray, 2003; Lennox et al, 2005; MacDonald &. Patka, 2012; Nicholson, Colyer, & Cooper, 2013; Scott, Wishart, & Bowyer, 2006). One approach to mitigating some of these difficulties is to establish a participant contact registry that can streamline the recruitment process by establishing a direct link to potential participants with ID. This article describes the development and operation of such a registry and presents the results of a survey on registry participants' views on the registry and on the research process in general. One of the first challenges to recruiting participants with ID into research studies is simply locating them. Individuals with ID live in the community in family homes, apartments, or group homes. They go to neighborhood schools or specialized schools, work in community businesses, and attend community programs. ID researchers typically contact schools and agencies that serve individuals with ID for help in locating research
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participants. Several researchers have discussed difficulties working with "gatekeepers"—the superintendents of school systems and directors of agencies who can facilitate access to potential participants with ID for research studies (e.g., Iacono, 2006; Lennox et al., 2005; Scott et al., 2006). For large organizations or school systems, there are often multiple layers of administration a researcher must work through before gaining permission to recruit participants. Even when these efforts are successful, this process can be time consuming. For example, a researcher might need to get approval from the school system, followed by the principals of schools, the students' teachers, and the students' parents. Agency directors and school personnel themselves may be under pressure in their service roles and may not want to take on additional responsibilities or risk upsetting families or other stakeholders. Some researchers have cited gatekeepers' overprotection, lack of enthusiasm, lack of effort, or inadequate understanding of the proposed study as important obstacles to participant recruitment (Becker et al., 2004; Hilgencamp et al., 2011; Lennox et al., 2005; MacDonald & Patka, 2012; Nicholson et al, 2013). For example, if an agency director agrees to help recruit participants for a research study but mentions the study only once to potential participants and does not explain the study or
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how to sign up for it, a low recruitment yield is likely. Eurther, because each school or agency may serve only a small number of individuals with ID, the researcher may need to develop cooperative relationships with several different gatekeepers to complete a single study. A second common obstacle to participant recruitment in ID research is the heavy demands of daily life already faced by individuals with ID and their families (e.g., Lennox et al., 2005; Nicholson et al., 2013). Eamilies may have extra home caregiving tasks, medical appointments, and therapy sessions. They may not see research participation as a high priority or as something they could fit into their schedule even if they wanted to participate. The individual with ID might be intimidated or anxious about what she or he would be asked to do in a study, and family members may be overprotective (Becker et al., 2004; Nicholson et al., 2013). Eurther, recruitment can be compromised if the family or the adult individual with ID does not see any direct benefits of participating in the study (Becker et al., 2004; Lennox et al, 2005; Nicholson et al, 2013). Third, the informed-consent process can be complicated, particularly for adults with ID, and in some cases it can discourage research participation. One issue is whether an adult with ID can or should sign informed consent for him- or herself (Iacono, 2006; Scott et al, 2006). Some adults with ID are legally able to sign for themselves, whereas others have legal guardians who sign for them. To determine whether each participant requires a legal guardian to sign, the researcher needs help from the referring agency. Another issue is comprehension. Even if an adult with ID is legally able to provide consent, she or he may have difficulty understanding the purpose of the study, what she or he will be asked to do, the risks and benefits, the protections, and the concept of research itself (Iacono & Murray, 2006; Lennox et al, 2005; Nicholson et al., 2013). Eor this reason, many researchers require the additional consent of an advocate or surrogate decision maker even for participants who can legally sign for themselves. Other reasons individuals with ID or their families may decline to participate in research include being poorly informed about the research study, not being given results of a previous study in which they participated, and being negatively influenced by family members or caregivers due to mistrust of
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research or researchers (Becker et al., 2004; Nicholson et al, 2013). Some researchers have described successful methods of recruiting participants with ID. Cleaver, Ouellette-Kuntz, and Sakar (2010) reviewed 20 years of studies involving adults with ID in the Developmental Disabilities Program in the psychiatry department at Queen's University in Southeastern Ontario. They reported specifically on studies that involved primary data collection with adults with ID that required informed consent. They found that researchers were more successful at recruiting adults with ID into their studies if (a) they already had direct access to participants (i.e., they did not have to depend on a third party to contact the participants), (b) data collection was noninvasive (i.e., it did not require blood samples or physical examinations), and (c) consent was only from substitute decision makers (i.e., next of kin) regardless of the participant's legal-guardianship status. Other researchers have also cited direct access to participants by trusted acquaintances as helpful to participant recruitment. Lennox et al. (2005) saw recruitment increase drastically when potential participants were telephoned by agency staff rather than by research staff. Swaine, Parish, Luken, and Atkins (2011) had good results when educationalprogram staff recruited participants for an on-site education-intervention study. Kao et al. (2011) arranged for research assistants to become trained volunteer-agency staff and then to contact families for the research study on behalf of the agencies. Hilgencamp et al. (2011) set up a partnership between care providers and academic departments and had doctoral students who were employed with the care providers recruit participants. Potential participants may feel more comfortable agreeing to participate when they talk about the research with someone they know and trust (Becker et al., 2004; but see MacDonald et al., 2009, for different views on the ethics of known versus neutral parties recruiting participants with ID). Eor research on programs and policies specific to those with ID, a participatory-action research approach may be helpful. In this approach, individuals with ID are involved with several aspects of the research process, including planning, recruiting, implementing, and serving as participants. Individuals with ID may be more receptive to participating in a study if others with ID are involved in these ways (e.g., Conder, Milner, &
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Mirfin-Veitch, 2011; Jurkowski, 2008). Other successful approaches to participant recruitment include providing information sessions that are convenient to participants (Lennox et al., 2005; Hilgencamp et al., 2011; Swaine et al, 2011), making extra efforts (i.e., multiple telephone calls) to contact potential participants and remind them to return consent forms (Hilgencamp et al, 2011), and taking time with the consent process to reduce stress (Hilgencamp et al., 2011). Another potentially successful approach to recruiting participants with ID is to develop a participant contact registry of individuals who are interested in participating in research studies. Once established, a participant registry can provide easy and efficient access to potential participants. Access to the participants is direct, and researchers do not have to go through gatekeepers to invite individuals or families to participate every time they conduct a study. Even though registry families experience many daily demands, they have made a decision to contribute to research and therefore they may try very hard to work out the logistics. Further, they may become increasingly comfortable with research participation and with researchers as they participate in more studies. Finally, the consent process can hecome more streamlined as registry coordinators come to know unique guardianship relationships of the registry participants. For example, for adults with ID, the registry can record the types of assistance each adult needs, including whether they have a legal guardian and who, if anyone, helps them with decision making. Several researchers have descrihed the development of participant contact registries for target populations other than people with ID. For example. Fellows, Stark, Berg, and Ghatterjee (2008) described two parallel registries of patients with brain injuries at the University of Pennsylvania and McGiU University. Janoski, Laird, Robinson, and South-Paul (2005) described a registry of community-hased primary-care patients at the University of Pittsburgh. Lui, Warburton, and Bartlett (2009) described the 50+ Registry of older adults at the University of Queensland. Gahida et al. (2011) and Lichtenherg (2011) described a registry of urban minority older adults serving the University of Michigan and Wayne State University. Dowling, Olson, Mish, Kaprakattu, and Gleason (2012) described a registry of Alzheimer's patients at the University of Wisconsin. Some of these registries are for medical research, some are
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for behavioral research, and some are for both types of research. Although participant contact registries of individuals with ID exist, notably at medical centers and National Institutes of Health-funded Intellectual and Developmental Disability Research Genters, none of those descrihed in the literature is specifically for participants with ID. In this article, we briefly describe the development of the University of Alabama Intellectual Disabilities Participant Registry (UAIDPR, or "the registry"). After 2 and a half years of operation of the UAIDPR, we surveyed registry participants about their decisions to join the registry and their experiences participating in research through the registry. Specifically, we wanted to find out how important certain characteristics of the registry were to their decision to join, what they thought would cause someone to decline to join, and whether they had a good experience when they participated in research studies. We also asked open-ended questions about how to recruit more minority participants and about what research in ID is most important.
Development of the UAIDPR The registry includes potential research participants of any age who already have a diagnosis of ID or have a syndrome closely associated with ID (Fragile X, Williams, etc.). However, to immediately facilitate our own research, we were especially interested in recruiting families with children and adolescents with Down syndrome who lived within ahout a 2-hr drive of the University of Alabama in Tuscaloosa. The registry operates under Institutional Review Board approval, and families must sign informed consent to be entered into the registry. Information on registry families is protected— researchers wishing to use the registry must go through the registry coordinator, who identifies potential participants and makes the first contact. When asked to participate in a study, a family is free to decline, and the registry may contact each family no more than three times per year to ask them to participate in studies. It is an explicit feature of the registry that the burden of participation is spread among the registrants, and no one participant or family is expected to participate every time they are asked. The first step in recruiting families into the registry was to develop a set of recruiting contacts.
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Tbese were people wbo work witb individuals witb ID in scbool systems, bospitals and clinics, socialservice agencies, and parent or advocacy organizations. In many cases we traveled to meet witb tbe recruiting contacts and gave informational talks describing tbe registry, bow it would work, and tbe types of researcb projects it would support. Witb tbe belp of tbe recruiting contacts, we used botb passive and active recruitment strategies (see Kao et al., 2011). Passive strategies included asking tbe recruiting contacts to distribute brocbures and flyers about tbe registry to potential participants and to assist tbem witb tbe information wbenever necessary. In tbese cases, potential participants could pbone or mail a card back to tbe registry to make initial contact. Tben we followed up to provide more information and tbe paperwork needed for tbem to join tbe registry. In some cases we posted ads or notices in agencies' newsletters or on tbeir websites. Also, we set up our own informational website, and anyone viewing tbe website could contact us. We linked tbe UAIDPR website to websites tbat serve tbe ID community. We also engaged in more active recruitment strategies sucb as attending conferences or events and eitber making a presentation or simply being available to talk witb parents. Most of tbe conferences or events were organized by scbool systems or parent or advocacy groups to provide families witb information about ID and tbe support systems available to tbem. Some were to promote awareness of ID (e.g.. Down Syndrome Buddy Walk). At several of tbese events, we set up a table to talk individually witb parents or guardians, provide brocbures, and let tbem fill out tbe forms to join tbe registry if tbey cbose to do so. Tbis gave families an opportunity to engage directly witb registry staff and researchers. If tbey so desired, tbey could get a full explanation of tbe registry, its purpose, and tbe importance of bebavioral researcb, and tbey could bave tbeir questions answered.
Registry Survey Tbe purpose of tbe registry survey was to find out wbat factors influenced families to join tbe registry and wbat factors influenced tbeir experience as registry participants. Also, we were interested in tbe perspective of registry families on wbat we can do to bring more families into tbe registry (especially minority families) and wbat researcb is most needed in tbe ID field.
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Method Participants. At tbe time tbe survey was completed, tbe registry included 257 individuals witb ID in 245 families (some families bad more tban one individual witb ID). Tbe survey sample included 92 families, for a return rate of 37.6%. Tbis included tbree families witb multiple individuals witb ID. Tbe registry and survey-sample demograpbics are provided in Table 1. We report tbe race, etbnicity, birtb year, and etiology of tbe family's individual with ID, as well as the mother's education level and the family's income. Tbe registry demograpbics are based on individuals witb ID (N = 257 in most cases), and tbe survey-sample demograpbics are based on families tbat participated in tbe survey (N = 92 in most cases). For tbe survey demograpbics, if tbere was more tban one individual witb ID in a family in tbe registry, we used tbe first individual listed. Altbougb tbe gender makeup of tbe registry and survey samples were fairly even (5O%-54% males), tbe racial and etbnic makeup was not bigbly diverse, witb 80%-90% Caucasian and 88%-92% not Hispanic (race and etbnicity were treated as overlapping categories). In botb tbe registry and survey samples, African Americans were underrepresented and Hispanics/Latinos were overrepresented. Based on 2010 Census figures for tbe four recruitment states, and weigbting based on proportions of registry participants from eacb state, we would expect approximately 25% of our registry and survey samples to be African American, ratber tban tbe actual respective 16.0% and 8.7%. We would expect 6.7% to be Hispanic/Latino, ratber tban tbe actual 11.7% and 8.7%. Expected representation of otber racial groups was very small and thus difficult to evaluate (1.4% Asian and 1.9% more tban one race). As for etiology of ID, over balf of families bad an individual witb Down syndrome, witb tbe next largest etiology group being unknown etiology, followed by autism spectrum disorder, Rett syndrome, and cerebral palsy. Altbougb birtb year ranged from 1957 to 2010, most individuals witb ID were born in eitber tbe 1990s or tbe 2000s; tbus tbe vast majority were cbildren or adolescents at tbe time tbe family joined tbe registry. Tbougb annual family income varied substantially, tbe largest number of families was in tbe range of $75,001$100,000. Most motbers bad eitber a college degree or a graduate degree. Altbougb tbe survey-sample
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Table 1 Percentage of Registry and Survey Sample in Several Demographic Categories
Demographic
Registry
Survey
White Black >1 race Asian/Pacific Islander
81.3 16.0 2.3 0.4
90.2 8.7 1.1 0.0
0.8 1.6 5.4 12.1 38.1 42.2
1.2 3.2 5.4 14.1 42.4 33.7
15.9 22.0 16.8 43.0 2.3
9.8 15.9 14.6 56.1 3.7
88.3 11.7
91.3 8.7
56.8 16.0 7.4 5.4
5.1 7.6
58.7 14.1 5.4 6.5 7.6 9.3
3.3 32.9 42.7 21.1
3.3 28.1 37.1 31.5
Race"
Birth year^ 1950-1959 1960-1969 1970-1979 1980-1989 1990-1999 2000-2010 Family income*^ $0-$25,000 $25,001-$50,000 $50,001-$75,000 $75,001-$100,000 Over $100,000 Ethnicity^ Not Hispanic Hispanic Etiology'' Down syndrome ID, unknown etiology ASD Rett syndrome Cerebral palsy Other Mother's education'' Less than high school High-school diploma College degree Graduate degree
Note. Superscripts refer to the number responding in the registry sample (total N = 257) and the survey sample (total A^ = 92), respectively. "256/92. "257/92. '"214/82. "246/89.
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demographics were largely similar to the registry demographics, the survey sample was slightly less racially and ethnically diverse, higher in family income, and higher in mother's education. Both the registry and sample demographics reflect ascertainment bias typical in research recruitment. Registry questionnaire. The registry questionnaire consisted of four sections. In the first section, there were five multiple-choice questions about participants' decision to join tbe registry. In the second section, there were three multiple-choice questions about why some families might not want to join the registry. In the third section, there were six multiple-choice questions about participants' experience in research studies through the registry. The fourth section asked two open-ended questions seeking suggestions for how to increase minority representation in tbe registry and soliciting parents' perspective on what research on ID is most needed. Procedure. Data were collected using both online data collection and traditional paper-andpencil procedures. Each of the registry families and individuals was contacted using tbeir preferred method of contact as recorded when they initially joined tbe registry. Families who were contacted by e-mail were provided a link to the online questionnaire; those contacted by postal mail were provided a hard copy of the questionnaire with a stamped return envelope; and tbose contacted by telephone were given the option to complete the questionnaire over the phone, have it mailed to them, or have the questionnaire link e-mailed to them. Each registry family or individual was sent an initial notice about tbe survey, followed by an invitation to participate 2 weeks later. They received up to two reminders, spaced 2 weeks apart, and if they completed the survey, they received a thank-you note. Families who participated in the survey allowed us to access their demographic data from tbe registry database.
Results Questionnaire section 1 : The decision to join the registry. Responses indicated that families first beard about the registry in a variety of ways (see Table 2), though tbe majority of families first heard about the registry either through a parent or advocacy group (32.6%) or at an event or meeting they attended (21.7%). A large majority of families felt positive or very positive about the registry when they first heard about it (83.6%). Tbe fact that the
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Table 2 Reasons for Joining the Registry: Mean "Very Important"
Importance
Ratings and Percentage Replying
Meati rating (SD)
Response item How important was each of these reasons in your decision to join the Registry? I wanted to encourage research on intellectual disabilities" I felt I should" I wanted my child to learn to help others" The Registry Coordinator was very nice'' I wanted to get involved at the University of Alabama" I wanted the gift card"' A teacher, doctor, or other person wanted me to join"
4.84 3.72 3.87 3.41 2.67 1.80 1.73
"Important'
or
% replying "Important" or "Very Important"
(0.43) (1.43) (1.23) (1.44) (1.44) (L32) (1.19)
97.8 66.7 64.8 55.6 27.5 14.4 10.2
Note. Ratings were on a scale of 1 to 5, from "Not Important" to "Very Important.' •'N = 91. "Ai = 90. W = 88. registry supports research that is low risk to participants was important or very important to 80.7% of families. The fact that the registry supports research that is not for profit was also important or very important to a majority of families (65.5%), as was the fact that the registry supports behavioral and not medical research (57.1%). The most important reason for joining the registry was to encourage research on ID (97.8% rated this as important or very important), followed by a sense of obligation ("I felt I should," 66.7%) and wanting one's child to learn to help others (64.8%). Finally, when asked if they would recommend the registry to other families, 84.6% said yes, 13.2% said maybe, and only 2.2% said no. Questionnaire section 2: Why others may not want to join the registry. Approximately a third of the respondents (31.1%) reported that they know a family that might be a good match for the registry but does not want to join the registry. The reason cited most often as important or very important for why someone might not want to join the registry was that they do not have time (65.5%). However, other reasons were cited hy a majority of participants, such as not wanting to share their private information (56.3%) and not wanting to fill out forms (54.0%). Respondents endorsed several factors that they thought would encourage more parents to join the registry. The most important factor was finding out something about their own child in a research study (95.6% said this was important or very important), followed by being able to talk with the researchers (86.7%), having
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more information about what it is like to be in a research study (80.0%), and being able to sign up online (73.0%). See Table 3 for more detail. Questionnaire section 3 : Experience in research studies. Based on the survey sample, the activity rate for registry families was relatively high, with well over half (59.3%) having been invited by the registry to participate in one or more research studies prior to the present survey (i.e., in a 3-year time period). Of those families who had been asked, 87.0% actually participated in one or more studies, with 31.5% having participated in more than one study. Of those who participated in a study, 86.7% said they liked it or liked it a lot and 11.1% were neutral. We asked the families who had participated in a study through the registry how things could have been better. Only nine respondents offered ideas, but among them, a common theme was that they would have liked mote information, either before the study (i.e., about the study procedures) or after it (i.e., about their child's results or the study results). We were interested in the reasons families declined to participate in research studies when asked by the registry. Of the seven respondents who had declined to participate in a study, five cited reasons having to do with travel and time requirements. We also asked all families about reasons they might decline to participate in a research study in the future when asked. The reasons most often cited as important or very important were "it might not fit into my schedule" (66.3%) and "I might not want to drive too far"
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Table 3 Reasons for Not Joining the Registry: Mean Importance Ratings and Percentage Replying "Important" "Very Important"
Response item
Mean rating (SD)
or
% replying "Important" or "Very Important"
Please rate these reasons some families might not want to join the Registry. They They They They They
don't have time" don't want to share their private information" don't want to fill out forms'' worry about getting junk mail or phone calls'' don't trust researchers"
3.83 3.59 3.52 3.45 2.94
(1.10) (1.16) (1.15) (1.20) (1.35)
65.5 56.3 54.0 51.2 36.8
4.65 (0.67) 4.34 (0.77)
94.5 86.7
4.18 3.99 3.46 2.81
80.0 73.0 48.9 29.5
What would make families more interested in joining the Registry? Finding out something about their own child after being in a research study' Being able to talk with the researchers'' Having more information about what it is like to be in a research study'' Being able to sign up onhne*-' Being able to go to an information meeting'' Getting more money or gift cards"
(0.98) (1.15) (1.19) (1.35)
Note. Ratings were on a scale of 1 to 5, from "Not Important" to "Very Important." W = 87. "A^ = 86. W = 89. 'A^ = 90. 'A^ = 88. 'N = 91. (62.2%). A small majority of respondents felt that it might be too expensive (51.7%), and half the participants said that it might take too much time (50.0%). See Table 4 for more detail. Questionnaire section 4: Two open-ended questions. The first of the two open-ended questions asked how the registry could better reach out to minority families to join the registry. Of those who completed the survey, 75.0% offered ideas. Table 5 includes the percentage of respondents offering an idea in each of several categories. By far the most commonly endorsed approach was to use the local school systems to get the word out to potential participants, with nearly half of respondents making this suggestion. Several respondents also suggested getting help from healthcare services, organizations that serve ID or minority communities, parent or advocacy groups, or community professionals (social workers, counselors, etc.). Still others suggested going to churches, homes, or neighborhoods; providing better incentives; and using the postal mail. Less common ideas for increasing minority recruitment to the registry included using a recruiter who was
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similar to prospective registry participants (in either minority status or having a child with ID); ensuring that the research is relevant to minority groups, not overly personal, and convenient; providing advice to the potential participants about their child; and hosting a meeting to explain the registry and the research process. The second open-ended question asked respondents the types of ID-related research they felt was most needed. Sixty-three of the 92 survey respondents answered this question (68.5%). Table 6 includes the percentage of respondents offering a topic of research in each of several categories. The most common topic offered was how to improve teaching and learning (reading, writing, math, functional skills, etc.), followed by speech/language/communication and specific etiologies of ID (e.g.. Down syndrome, Eragile X syndrome, autism spectrum disorder). Also, several respondents felt that transition from school to adult roles and how to improve schools were important topics for research. Other research topics cited as important by a few respondents were emotional and social skills, behavior management, causes and prevention of
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Table 4 Reasons for Declining to Participate in a Research Study: Mean Importance Ratings and Percentage Replying "Important" or "Very Important"
Response item
Mean rating (5D)
% replying "Important" or "Very Important"
3.60 (1.49) 3.61 (1.25) 3.29 (1.53) 3.32 (1.34) 3.47 (1.23) 2.75 (1.75) 2.76 (1.65) 2.77 (1.30) 2.42 (1.07)
62.2 60.7 51.7 50.0 48.9 42.0 38.2 29.5 13.6
Below are some reasons a person mig/it say "No" when asked to be in a research study. Please rate the importance of each reason to YOU. I might not want to drive too far" It might be hard to fit into my schedule*" It might be too expensive for me*" It might take too much time' My child might not want to do if I might not have transportation" It might be hard to find child care" The testers might not be well trained" It might not be an important study*"
Note. Ratings were on a scale of 1 to 5, from "Not Important" to "Very Important." "N = 90. "TV = 89. W = 88. ID, inclusion and mainstreaming, medication to improve cognitive function, and support and resources for families. . The purpose of this article was to describe the development of a regional contact registry for
research participants with ID and assess families' perspectives regarding the registry. We surveyed registry families ahout their decisions to join the registry, their thoughts about why other families may not want to join the registry, and their experience participating in research studies through the registry. In addition, we asked for their thoughts
Table 5 Open-Ended Responses Regarding How to Increase Minority Enrollment in the Registry
Response category
% suggesting
We would like the Registry to include families of different racial and ethnic backgrounds. How do you think we can better reach out to minority families? Go to schools, teachers, PTA, special-ed directors, day cares Go to hospitals/clinics, health-care professionals Go to organizations/programs that serve people with ID Go to churches and church-affiliated groups Provide incentives, transportation, child care Go to advocacy/support groups for families with disabilities Go to their home or neighborhood Go to organizations/programs that serve minority communities Go to social workers, counselors, and caseworkers Use postal mail Other
46.4 15.9 14.5 14.5 13.0 10.1 10.1 8.7 8.7 7.2 2V1_
Note. N = 69. Because most respondents provided multiple suggestions, the total of percentages exceeds 100%.
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Table 6 Open-Ended Responses Regarding What Research on ID Is Most Needed
Response category
suggesting
Wfiat research on intellectual disability do you think is most needed? Teaching and learning Speech/language/communication Specific etiologies of ID Transition from school/teen and young-adult issues Improving schools and services Emotional and social skills Behavior management Causes and prevention of ID Inclusion and mainstreaming Medication to improve cognitive functions Support and resources for families Other
34.9 17.5 12.7 11.1 11.1 7.9 7.9 7.9 4.8 4.8 4.8 15 9
Note. N = 63. Because many respondents provided multiple suggestions, the total of percentages exceeds 100%. on bow to recruit minority families into tbe registry and wbat researcb is most needed in tbe ID field. Results of tbe registry survey converged on four tbemes. Tbe first tbeme is tbat families wbo joined tbe registry did so out of a desire to belp otber families witb ID by contributing to researcb. Also, tbey felt a sense of obligation and tbey wanted tbeir son or daugbter to learn to belp otbers. Tbus, wben recruiting families or individuals into a registry or into specific researcb studies, it may be belpful to point out tbe specific ways in wbicb tbey would be belping otbers. One way of doing tbis is to inform families wbo are being recruited about tbe important findings tbat bave come from previous researcb involving registry participants. Anotber way is to inform families wbo have participated of wbat was learned from tbe specific studies in wbicb tbey participated. Tbe second tbeme tbat emerged from tbe registry-survey results is tbat tbe main factors keeping families from participating in researcb are logistic concerns and concerns about privacy. Survey respondents suggested tbat tbe top reasons otbers may bave for not joining tbe registry are tbat tbey do not bave time, tbey do not want to fill out forms, and tbey may be wary of sbaring tbeir private information. Respondents also said tbat tbeir own actual and anticipated reasons for declining to participate in researcb studies bad mostly to do witb logistics, sucb as travel distance, time, and scbeduling. Many researcbers bave acknowledged tbat tbe extra demands of daily life for families and
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individuals witb ID are important obstacles to participant recruitment (e.g., Lennox et al, 2005; Nicbolson et al., 2013). Wben researcbers can work around participants' scbedules, reduce travel demands for participants, and assure participants tbat tbeir information will be kept private, recruitment sbould be more successful. Building trust may be particularly important for participants' concern for privacy. Tbe tbird tbeme tbat emerged from tbe survey data is tbat families wisb to be better informed about tbe nature and results of tbe studies in wbicb tbey participate. For example, respondents felt tbat if families were better informed about wbat it is like to be in a researcb study and bad a cbance to talk witb researcbers, tbey migbt be more likely to join tbe registry. Some also felt tbat tbeir own experience participating in researcb studies would be improved if tbey bad more information about tbe study procedures before participating. Consistent witb tbis, intermediaries (i.e., gatekeepers) interviewed by Nicbolson et al. (2013) felt tbat "participant factors" may keep adults witb ID from volunteering for researcb studies. Tbese include feeling anxiety about wbat tbey would bave to do in a researcb study and not tborougbly understanding tbe concept of researcb. Tbus, lack of full understanding may importantly affect decisions to become involved in researcb, in terms of botb joining a registry and deciding to participate in specific researcb studies.
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Survey respondents also said that tbeir experience in research would be better if tbey had more information about the results of the study afterwards (see also Lui et al, 2009). Receiving the study results provides confirmation tbat tbe time and effort they spent in the study were worthwhile. But also, it lets families and participants know exactly what was learned with the help of their time and effort. Nicholson et al. (2013) also reported that, according to intermediaries, if adults with ID had not received results from a previous study, they were less likely to agree to participate in a future study. Families and participants may not realize bow long it takes before a reliable report of study findings can be disseminated. However, researchers can communicate this to them and provide interim findings in laypersons' terms. Our registry newsletter is one outlet for providing this type of information. Informal feedback from families suggests that tbis is much appreciated. The fourtb theme emerging from the survey responses is that families hope that research findings will belp make daily life better for individuals witb ID and their families. For example, a majority of survey respondents said that it was important or very important to them tbat tbe registry was restricted to behavioral (not medical) research. Anecdotally, we have heard many parents say tbat tbey are more interested in research tbat belps them understand tbeir child's behavioral and learning difficulties—and how to manage them— than they are with biomédical research aimed at preventing or treating ID. Corroborating this anecdotal evidence, respondents' comments on what research is most needed in tbe ID field focused heavily on bebavioral (not medical) issues, such as how to improve teaching and learning and how to improve transition from scbool to adult life. Of course, the survey responses come from a restricted group of families with ID—those who are willing to join a participant contact registry of this particular nature, and families with relatively high educational attainment. Further, tbe most popular response wben asked what would encourage more families to join the registry was finding out something about their own son or daughter. We have seen that many parents of individuals with ID are actively committed to understanding their child's strengths, challenges, and idiosyncrasies; and they are constantly looking for ways to promote their cbild's personal growth and development. It is possible in some studies to
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provide specific, reliable information about participants to tbeir parents (i.e., studies that conduct clinical assessments or interventions). However, in many studies, the information gained is only useful in tbe aggregate. Even wben it is possible to offer feedback on individual participants, researchers are leery of giving parents information about tbeir child that may be unreliable, misunderstood, or misused. Further, providing this type of feedback outside of a clinical relationship with the participant raises ethical concerns. Still, individual feedback represents an important incentive for parents, and something for researchers to try to build into tbeir studies when possible. One of tbe aspects of the registry we felt was in need of improvement at the outset of the survey study was minority representation. Altbougb our Hispanic/Latino representation was adequate based on demographics of the four contributing states, our African American representation was too low. Thus, we asked respondents for ideas on how to recruit more minority families into the registry. The most often offered idea category was to work with schools, teachers, special-education directors, and PTAs to reach out to minority families. In general, tbis was already a main approacb for our recruitment, except that we did not work heavily with PTAs, and we did not ask specifically for help in recruiting minority families. Other ideas offered also largely replicated our past recruiting efforts, with a few exceptions. For example, we did not go to community professionals (social workers and counselors), community health clinics, or organizations that specifically serve minority communities. These sources may be belpful in future recruitment efforts. Altbough studies have sbown tbat "etbnic matcbing" of recruiter and potential participant is not itself particularly effective at improving recruitment rates of minority participants (see Woodall, Morgan, Sloan, & Howard, 2010, for a review), active recruitment strategies appear to be important (see Becker et al., 2004; Kao et al., 2011; Magana, 2000). Kao et al. (2011) found tbat active strategies (direct calls from patient or participant lists, recruiter attendance or presentation at an event, and word of mouth) were more effective overall than passive strategies (mailings, websites, recruitment flyers). However, tbe effect was particularly strong for Latino families, wbetber they had family members with ID or not. Registries aimed at recruiting older African American adults
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also have reported recruiting success using highly active recruitment strategies (Cahida et al, 2011; Lichtenberg, 2011). It is likely that the best outcome for minority recruitment can be achieved by using active strategies targeted toward minorityoriented organizations and events. A number of limitations of the present study should be noted. First, the response rate for the survey was fairly low. This may seem somewhat surprising, given that the purpose of joining the registry is to participate in research studies. Moreover, the survey could be completed from the participants' homes without a large commitment of time or effort. However, it must be noted that an explicit philosophy of the registry is to maintain contact with participants without imposing a burdensome sense of commitment. This translates to an explicit expectation that registrants are not obligated to agree to participate every time they are asked. There are few comparable studies against which we can compare our response rate. Lui et al. (2009) surveyed participants in their 50+ Registry of older adults and achieved a much better return rate of 73.6% (142 of 193 surveys completed). However, their approach was different from ours. First, because their focus was on experiences of registry participants in research studies, they included in the survey only tbose older adults from their registry who had participated in at least one research study in the last year (i.e., the most recently active ones). Thus, their survey sample of 142 reflected only about 18% of their total registry population of over 800. In contrast, we included all participants in the registry, regardless of whether they had participated in any research studies. Also, the older-adult demographic (as in the 50+ Registry) in general may have more time to complete a survey than families of individuals with ID. A survey of investigators who operate and use registries could add importantly to this discussion. Another limitation of the present survey is that neither our registry nor our survey sample was representative of the population of families with ID. To suit our research needs, our recruitment efforts emphasized children and adolescents with ID, with particular focus on Down syndrome. Thus, the registry is not representative in terms of age of the family's individual with ID, etiology of ID, and probably level of ID. In addition, although we used some active recruiting strategies, as already mentioned, we did not achieve adequate representation of African American families. Finally, the registry and survey samples of course consist of families and
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individuals who are pro-research and favorable to research participation. In spite of the study's limitations, several important findings emerged. We found that families who were enrolled in our participant contact registry have a strong desire to help others by contributing to research. They feel that research can and should make daily life better for individuals with ID and their families. However, the logistics of participating in research can be a major barrier to research participation for families. When families do participate in research, their experience is good, but still they would like more information both before and after being in a study. Thus, there are many families and individuals with ID who are enthusiastic about participating in research. A participant contact registry can be an effective tool for communicating with those families and individuals and referring them to research studies. This is true especially if researchers using the registry are accommodating to participants in terms of time and place of participation, and especially if researchers take the time to provide full information to participants both before and after the study. With careful attention to these issues, participant contact registries can be instrumental in accelerating the pace of research on ID.
References Becker, H., Roberts, G., Morrison, J., & Silver, J. (2004). Recruiting people with disabilities as research participants: Challenges and strategies to address them. Mentai Retardation, 42,471^75. Cahida, L. A., Washington, O. G. M., Lichtenberg, P. A., Green, C. R., Daniels, K. L., &. Jackson, J. S. (2011). Building a registry of research volunteers among older urban African Americans: Recruitment processes and outcomes from a community-based partnership. Gerontobgist, 51, 5106-5115.
Cleaver, S., Ouellette-Kuntz, H., & Sakar, A. (2010). Participation in intellectual disability research: A review of 20 years of studies. Journal of Intellectual Disability Research, 54, 187-193.
Conder, J., Milner, P., & Mirfin-Veitch, B. (2011). Reflections on a participatory project: The rewards and challenges for the lead researchers. Journal of Intellectual and Developmental Disability, 36, 39-48.
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Dowling, N. M., Olson, N., Mish, T., Kaprakattu, P., & Gleason, C. (2012). A model for the design and implementation of a participant recruitment registry for clinical studies of older adults. Cíinicaí Trials, 9, 204-214. Fellows, L. K., Stark, M., Berg, A., & Chatterjee, A. (2008). Patient registries in cognitive neuroscience research: Advantages, challenges, and practical advice. Journal of Cognitive Neuroscience 20, 1107-1113. Hilgencamp, T. I. M., Bastiaanse, L. P., Hermans, H., Penning, C , van Wijck, R., &. Evenhuis, H. M. (2011). Study healthy ageing and intellectual disabilities: Recruitment and design. Research in Developmental Disabilities, 32, 1097-1106. Iacono, T. (2006). Ethical challenges and complexities of including people with intellectual disability as participants in research. Journal of Intellectual and Developmental Disability, 3 1 , 173-179. Iacono, T., & Murray, V. (2003). Issues of informed consent in conducting medical research involving people with intellectual disability. Journal of Applied Research in Intellectual Disabilities, 16, 41-51. Janoski, J. E., Laird, S. B., Robinson, J. D., & South-Paul, J. E. (2005). Development of a research registry for primary care communitybased research. Family Practice, 22, 358-360. Jurkowski, J. M. (2008). Photovoice as participatory action research tool for engaging people with intellectual disabilities in research and program development. Intellectual and Developmental Disabilities, 46, 1-11. Kao, B., Lobato, D., Grullon, E., Cheas, L., Plante, W., Seifer, R., & Canino, G. (2011). Recruiting Latino and non-Latino families in pédiatrie research: Considerations from a study on childhood disability. Journal of Pédiatrie Psychobgy, 36, 1093-1101. Lennox, N., Taylor, M., Rey-Conde, T., Bain, C , Purdie, D. M., & Boyle, E. (2005). Beating the barriers: Recruitment of people with intellectual disability to participate in research. Journal of Intellectual Disability Research, 49, 296-305. Lichtenberg, P. A. (2011). Generalizability of a participant registry for minority health research. Gerontologist, 51, 5116-5124. Lui, C. W., Warburton, J., & Bartiett, H. (2009). Doing good and feeling good: The experiences of older volunteers in a university research registry. Educational Gerontology, 35, 553-569.
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MacDonald, K. E., Kidney, D. A, Nelms, S. L., Parker, M. R., Kimmel, A., & Keys, C. B. (2009). Including adults with intellectual disabilities in research: Scientists' perceptions of risks and protections. Journal of Policy and Practice in Intellectvuxl Disabilities, 6, 244-252. MacDonald, K., & Patka, M. (2012). "There is no black or white": Scientific community views on ethics in intellectual and developmental disability research. Journal of Policy and Practice in Intellectual Disabilities, 9, 206-214. Magana, S. (2000). Mental retardation research methods in Latino communities. Mental Retardation, 38, 303-315. Nicholson, L., Colyer, M., &. Cooper, S.-A. (2013). Recruitment to intellectual disability research: A qualitative study. Journal of Intellectual Disability Research, 57, 647-656. Scott, J. K., Wishart, J. G., &. Bowyer, D. J. (2006). Do current consent and confidentiality requirements impede or enhance research with children with learning disabilities? Disability and Society, 21, 273-287. Swaine, J., Parish, S. L., Luken, K., & Atkins, L. (2011). Recruitment and consent of women with intellectual disabilities in a randomized control trial of a health promotion intervention. Journal of Intellectual Disability Research, 55, 474^83. Woodall, A., Morgan, C , Sloan, C , & Howard, L. (2010). Barriers to participation in mental health research: Are there specific gender, ethnicity and age related barriers? BMC Psychiatry, 10, 103.
Received 6/2512013,firstdecision 10111/2013, accepted 11/15/2013. We thank all the registry families for their dedication to advancing research in ID. We thank Kimberly Bowens and Shika Mukkamala for their help with the registry survey. Grants HD055345 and HD055345-S1 supported the registry, the registry survey, and the writing of this article. Authors: Frances A. Conners (e-mail: [email protected]. @email.com). University of Alabama, Box 870348, Tuscaloosa, AL 35487-0348, USA; B. AUyson Phillips and James C. Hamilton, University of Alabama; Jennifer D. Rhodes, Stigler Health and Wellness Center.
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Family Experience in a Regional Participant Contact Registry for Research on Intellectual Disability Frances A. Conners, B. Allyson Phillips, Jennifer D. Rhodes, and James C. Hamilton
Abstract Participant recruitment is one of the most significant challenges in research on intellectual disability (ID). One potential solution is to develop a participant contact registry, which allows the researcher to contact participants directly rather than recruiting through multiple schools or service agencies. The authors describe the development of one such registry and results of a survey of registry families. Results suggest that families joined the registry to help others, they hope research in the ID field improves the daily lives of individuals with ID and their families, and they find research participation to be a positive experience. However, logistic concerns can be an important barrier to their research participation, and they would like more information about the research study both before and after participating. Key Words:
participant recruiting; research participation; participant contact registry; family perspectives
One of the greatest obstacles to research in the field of intellectual disability (ID) is reliable recruitment of research participants. Several researchers have described the unique challenges of recruiting participants with ID for research studies. These challenges include access to the participants, the demands of daily life faced by this population, and the complexities of the consent process for this population (Becker, Roberts, Morrison, & Silver, 2004; Iacono & Murray, 2003; Lennox et al, 2005; MacDonald &. Patka, 2012; Nicholson, Colyer, & Cooper, 2013; Scott, Wishart, & Bowyer, 2006). One approach to mitigating some of these difficulties is to establish a participant contact registry that can streamline the recruitment process by establishing a direct link to potential participants with ID. This article describes the development and operation of such a registry and presents the results of a survey on registry participants' views on the registry and on the research process in general. One of the first challenges to recruiting participants with ID into research studies is simply locating them. Individuals with ID live in the community in family homes, apartments, or group homes. They go to neighborhood schools or specialized schools, work in community businesses, and attend community programs. ID researchers typically contact schools and agencies that serve individuals with ID for help in locating research
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participants. Several researchers have discussed difficulties working with "gatekeepers"—the superintendents of school systems and directors of agencies who can facilitate access to potential participants with ID for research studies (e.g., Iacono, 2006; Lennox et al., 2005; Scott et al., 2006). For large organizations or school systems, there are often multiple layers of administration a researcher must work through before gaining permission to recruit participants. Even when these efforts are successful, this process can be time consuming. For example, a researcher might need to get approval from the school system, followed by the principals of schools, the students' teachers, and the students' parents. Agency directors and school personnel themselves may be under pressure in their service roles and may not want to take on additional responsibilities or risk upsetting families or other stakeholders. Some researchers have cited gatekeepers' overprotection, lack of enthusiasm, lack of effort, or inadequate understanding of the proposed study as important obstacles to participant recruitment (Becker et al., 2004; Hilgencamp et al., 2011; Lennox et al., 2005; MacDonald & Patka, 2012; Nicholson et al, 2013). For example, if an agency director agrees to help recruit participants for a research study but mentions the study only once to potential participants and does not explain the study or
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how to sign up for it, a low recruitment yield is likely. Eurther, because each school or agency may serve only a small number of individuals with ID, the researcher may need to develop cooperative relationships with several different gatekeepers to complete a single study. A second common obstacle to participant recruitment in ID research is the heavy demands of daily life already faced by individuals with ID and their families (e.g., Lennox et al., 2005; Nicholson et al., 2013). Eamilies may have extra home caregiving tasks, medical appointments, and therapy sessions. They may not see research participation as a high priority or as something they could fit into their schedule even if they wanted to participate. The individual with ID might be intimidated or anxious about what she or he would be asked to do in a study, and family members may be overprotective (Becker et al., 2004; Nicholson et al., 2013). Eurther, recruitment can be compromised if the family or the adult individual with ID does not see any direct benefits of participating in the study (Becker et al., 2004; Lennox et al, 2005; Nicholson et al, 2013). Third, the informed-consent process can be complicated, particularly for adults with ID, and in some cases it can discourage research participation. One issue is whether an adult with ID can or should sign informed consent for him- or herself (Iacono, 2006; Scott et al, 2006). Some adults with ID are legally able to sign for themselves, whereas others have legal guardians who sign for them. To determine whether each participant requires a legal guardian to sign, the researcher needs help from the referring agency. Another issue is comprehension. Even if an adult with ID is legally able to provide consent, she or he may have difficulty understanding the purpose of the study, what she or he will be asked to do, the risks and benefits, the protections, and the concept of research itself (Iacono & Murray, 2006; Lennox et al, 2005; Nicholson et al., 2013). Eor this reason, many researchers require the additional consent of an advocate or surrogate decision maker even for participants who can legally sign for themselves. Other reasons individuals with ID or their families may decline to participate in research include being poorly informed about the research study, not being given results of a previous study in which they participated, and being negatively influenced by family members or caregivers due to mistrust of
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research or researchers (Becker et al., 2004; Nicholson et al, 2013). Some researchers have described successful methods of recruiting participants with ID. Cleaver, Ouellette-Kuntz, and Sakar (2010) reviewed 20 years of studies involving adults with ID in the Developmental Disabilities Program in the psychiatry department at Queen's University in Southeastern Ontario. They reported specifically on studies that involved primary data collection with adults with ID that required informed consent. They found that researchers were more successful at recruiting adults with ID into their studies if (a) they already had direct access to participants (i.e., they did not have to depend on a third party to contact the participants), (b) data collection was noninvasive (i.e., it did not require blood samples or physical examinations), and (c) consent was only from substitute decision makers (i.e., next of kin) regardless of the participant's legal-guardianship status. Other researchers have also cited direct access to participants by trusted acquaintances as helpful to participant recruitment. Lennox et al. (2005) saw recruitment increase drastically when potential participants were telephoned by agency staff rather than by research staff. Swaine, Parish, Luken, and Atkins (2011) had good results when educationalprogram staff recruited participants for an on-site education-intervention study. Kao et al. (2011) arranged for research assistants to become trained volunteer-agency staff and then to contact families for the research study on behalf of the agencies. Hilgencamp et al. (2011) set up a partnership between care providers and academic departments and had doctoral students who were employed with the care providers recruit participants. Potential participants may feel more comfortable agreeing to participate when they talk about the research with someone they know and trust (Becker et al., 2004; but see MacDonald et al., 2009, for different views on the ethics of known versus neutral parties recruiting participants with ID). Eor research on programs and policies specific to those with ID, a participatory-action research approach may be helpful. In this approach, individuals with ID are involved with several aspects of the research process, including planning, recruiting, implementing, and serving as participants. Individuals with ID may be more receptive to participating in a study if others with ID are involved in these ways (e.g., Conder, Milner, &
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Mirfin-Veitch, 2011; Jurkowski, 2008). Other successful approaches to participant recruitment include providing information sessions that are convenient to participants (Lennox et al., 2005; Hilgencamp et al., 2011; Swaine et al, 2011), making extra efforts (i.e., multiple telephone calls) to contact potential participants and remind them to return consent forms (Hilgencamp et al, 2011), and taking time with the consent process to reduce stress (Hilgencamp et al., 2011). Another potentially successful approach to recruiting participants with ID is to develop a participant contact registry of individuals who are interested in participating in research studies. Once established, a participant registry can provide easy and efficient access to potential participants. Access to the participants is direct, and researchers do not have to go through gatekeepers to invite individuals or families to participate every time they conduct a study. Even though registry families experience many daily demands, they have made a decision to contribute to research and therefore they may try very hard to work out the logistics. Further, they may become increasingly comfortable with research participation and with researchers as they participate in more studies. Finally, the consent process can hecome more streamlined as registry coordinators come to know unique guardianship relationships of the registry participants. For example, for adults with ID, the registry can record the types of assistance each adult needs, including whether they have a legal guardian and who, if anyone, helps them with decision making. Several researchers have descrihed the development of participant contact registries for target populations other than people with ID. For example. Fellows, Stark, Berg, and Ghatterjee (2008) described two parallel registries of patients with brain injuries at the University of Pennsylvania and McGiU University. Janoski, Laird, Robinson, and South-Paul (2005) described a registry of community-hased primary-care patients at the University of Pittsburgh. Lui, Warburton, and Bartlett (2009) described the 50+ Registry of older adults at the University of Queensland. Gahida et al. (2011) and Lichtenherg (2011) described a registry of urban minority older adults serving the University of Michigan and Wayne State University. Dowling, Olson, Mish, Kaprakattu, and Gleason (2012) described a registry of Alzheimer's patients at the University of Wisconsin. Some of these registries are for medical research, some are
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for behavioral research, and some are for both types of research. Although participant contact registries of individuals with ID exist, notably at medical centers and National Institutes of Health-funded Intellectual and Developmental Disability Research Genters, none of those descrihed in the literature is specifically for participants with ID. In this article, we briefly describe the development of the University of Alabama Intellectual Disabilities Participant Registry (UAIDPR, or "the registry"). After 2 and a half years of operation of the UAIDPR, we surveyed registry participants about their decisions to join the registry and their experiences participating in research through the registry. Specifically, we wanted to find out how important certain characteristics of the registry were to their decision to join, what they thought would cause someone to decline to join, and whether they had a good experience when they participated in research studies. We also asked open-ended questions about how to recruit more minority participants and about what research in ID is most important.
Development of the UAIDPR The registry includes potential research participants of any age who already have a diagnosis of ID or have a syndrome closely associated with ID (Fragile X, Williams, etc.). However, to immediately facilitate our own research, we were especially interested in recruiting families with children and adolescents with Down syndrome who lived within ahout a 2-hr drive of the University of Alabama in Tuscaloosa. The registry operates under Institutional Review Board approval, and families must sign informed consent to be entered into the registry. Information on registry families is protected— researchers wishing to use the registry must go through the registry coordinator, who identifies potential participants and makes the first contact. When asked to participate in a study, a family is free to decline, and the registry may contact each family no more than three times per year to ask them to participate in studies. It is an explicit feature of the registry that the burden of participation is spread among the registrants, and no one participant or family is expected to participate every time they are asked. The first step in recruiting families into the registry was to develop a set of recruiting contacts.
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Tbese were people wbo work witb individuals witb ID in scbool systems, bospitals and clinics, socialservice agencies, and parent or advocacy organizations. In many cases we traveled to meet witb tbe recruiting contacts and gave informational talks describing tbe registry, bow it would work, and tbe types of researcb projects it would support. Witb tbe belp of tbe recruiting contacts, we used botb passive and active recruitment strategies (see Kao et al., 2011). Passive strategies included asking tbe recruiting contacts to distribute brocbures and flyers about tbe registry to potential participants and to assist tbem witb tbe information wbenever necessary. In tbese cases, potential participants could pbone or mail a card back to tbe registry to make initial contact. Tben we followed up to provide more information and tbe paperwork needed for tbem to join tbe registry. In some cases we posted ads or notices in agencies' newsletters or on tbeir websites. Also, we set up our own informational website, and anyone viewing tbe website could contact us. We linked tbe UAIDPR website to websites tbat serve tbe ID community. We also engaged in more active recruitment strategies sucb as attending conferences or events and eitber making a presentation or simply being available to talk witb parents. Most of tbe conferences or events were organized by scbool systems or parent or advocacy groups to provide families witb information about ID and tbe support systems available to tbem. Some were to promote awareness of ID (e.g.. Down Syndrome Buddy Walk). At several of tbese events, we set up a table to talk individually witb parents or guardians, provide brocbures, and let tbem fill out tbe forms to join tbe registry if tbey cbose to do so. Tbis gave families an opportunity to engage directly witb registry staff and researchers. If tbey so desired, tbey could get a full explanation of tbe registry, its purpose, and tbe importance of bebavioral researcb, and tbey could bave tbeir questions answered.
Registry Survey Tbe purpose of tbe registry survey was to find out wbat factors influenced families to join tbe registry and wbat factors influenced tbeir experience as registry participants. Also, we were interested in tbe perspective of registry families on wbat we can do to bring more families into tbe registry (especially minority families) and wbat researcb is most needed in tbe ID field.
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Method Participants. At tbe time tbe survey was completed, tbe registry included 257 individuals witb ID in 245 families (some families bad more tban one individual witb ID). Tbe survey sample included 92 families, for a return rate of 37.6%. Tbis included tbree families witb multiple individuals witb ID. Tbe registry and survey-sample demograpbics are provided in Table 1. We report tbe race, etbnicity, birtb year, and etiology of tbe family's individual with ID, as well as the mother's education level and the family's income. Tbe registry demograpbics are based on individuals witb ID (N = 257 in most cases), and tbe survey-sample demograpbics are based on families tbat participated in tbe survey (N = 92 in most cases). For tbe survey demograpbics, if tbere was more tban one individual witb ID in a family in tbe registry, we used tbe first individual listed. Altbougb tbe gender makeup of tbe registry and survey samples were fairly even (5O%-54% males), tbe racial and etbnic makeup was not bigbly diverse, witb 80%-90% Caucasian and 88%-92% not Hispanic (race and etbnicity were treated as overlapping categories). In botb tbe registry and survey samples, African Americans were underrepresented and Hispanics/Latinos were overrepresented. Based on 2010 Census figures for tbe four recruitment states, and weigbting based on proportions of registry participants from eacb state, we would expect approximately 25% of our registry and survey samples to be African American, ratber tban tbe actual respective 16.0% and 8.7%. We would expect 6.7% to be Hispanic/Latino, ratber tban tbe actual 11.7% and 8.7%. Expected representation of otber racial groups was very small and thus difficult to evaluate (1.4% Asian and 1.9% more tban one race). As for etiology of ID, over balf of families bad an individual witb Down syndrome, witb tbe next largest etiology group being unknown etiology, followed by autism spectrum disorder, Rett syndrome, and cerebral palsy. Altbougb birtb year ranged from 1957 to 2010, most individuals witb ID were born in eitber tbe 1990s or tbe 2000s; tbus tbe vast majority were cbildren or adolescents at tbe time tbe family joined tbe registry. Tbougb annual family income varied substantially, tbe largest number of families was in tbe range of $75,001$100,000. Most motbers bad eitber a college degree or a graduate degree. Altbougb tbe survey-sample
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Table 1 Percentage of Registry and Survey Sample in Several Demographic Categories
Demographic
Registry
Survey
White Black >1 race Asian/Pacific Islander
81.3 16.0 2.3 0.4
90.2 8.7 1.1 0.0
0.8 1.6 5.4 12.1 38.1 42.2
1.2 3.2 5.4 14.1 42.4 33.7
15.9 22.0 16.8 43.0 2.3
9.8 15.9 14.6 56.1 3.7
88.3 11.7
91.3 8.7
56.8 16.0 7.4 5.4
5.1 7.6
58.7 14.1 5.4 6.5 7.6 9.3
3.3 32.9 42.7 21.1
3.3 28.1 37.1 31.5
Race"
Birth year^ 1950-1959 1960-1969 1970-1979 1980-1989 1990-1999 2000-2010 Family income*^ $0-$25,000 $25,001-$50,000 $50,001-$75,000 $75,001-$100,000 Over $100,000 Ethnicity^ Not Hispanic Hispanic Etiology'' Down syndrome ID, unknown etiology ASD Rett syndrome Cerebral palsy Other Mother's education'' Less than high school High-school diploma College degree Graduate degree
Note. Superscripts refer to the number responding in the registry sample (total N = 257) and the survey sample (total A^ = 92), respectively. "256/92. "257/92. '"214/82. "246/89.
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demographics were largely similar to the registry demographics, the survey sample was slightly less racially and ethnically diverse, higher in family income, and higher in mother's education. Both the registry and sample demographics reflect ascertainment bias typical in research recruitment. Registry questionnaire. The registry questionnaire consisted of four sections. In the first section, there were five multiple-choice questions about participants' decision to join tbe registry. In the second section, there were three multiple-choice questions about why some families might not want to join the registry. In the third section, there were six multiple-choice questions about participants' experience in research studies through the registry. The fourth section asked two open-ended questions seeking suggestions for how to increase minority representation in tbe registry and soliciting parents' perspective on what research on ID is most needed. Procedure. Data were collected using both online data collection and traditional paper-andpencil procedures. Each of the registry families and individuals was contacted using tbeir preferred method of contact as recorded when they initially joined tbe registry. Families who were contacted by e-mail were provided a link to the online questionnaire; those contacted by postal mail were provided a hard copy of the questionnaire with a stamped return envelope; and tbose contacted by telephone were given the option to complete the questionnaire over the phone, have it mailed to them, or have the questionnaire link e-mailed to them. Each registry family or individual was sent an initial notice about tbe survey, followed by an invitation to participate 2 weeks later. They received up to two reminders, spaced 2 weeks apart, and if they completed the survey, they received a thank-you note. Families who participated in the survey allowed us to access their demographic data from tbe registry database.
Results Questionnaire section 1 : The decision to join the registry. Responses indicated that families first beard about the registry in a variety of ways (see Table 2), though tbe majority of families first heard about the registry either through a parent or advocacy group (32.6%) or at an event or meeting they attended (21.7%). A large majority of families felt positive or very positive about the registry when they first heard about it (83.6%). Tbe fact that the
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Table 2 Reasons for Joining the Registry: Mean "Very Important"
Importance
Ratings and Percentage Replying
Meati rating (SD)
Response item How important was each of these reasons in your decision to join the Registry? I wanted to encourage research on intellectual disabilities" I felt I should" I wanted my child to learn to help others" The Registry Coordinator was very nice'' I wanted to get involved at the University of Alabama" I wanted the gift card"' A teacher, doctor, or other person wanted me to join"
4.84 3.72 3.87 3.41 2.67 1.80 1.73
"Important'
or
% replying "Important" or "Very Important"
(0.43) (1.43) (1.23) (1.44) (1.44) (L32) (1.19)
97.8 66.7 64.8 55.6 27.5 14.4 10.2
Note. Ratings were on a scale of 1 to 5, from "Not Important" to "Very Important.' •'N = 91. "Ai = 90. W = 88. registry supports research that is low risk to participants was important or very important to 80.7% of families. The fact that the registry supports research that is not for profit was also important or very important to a majority of families (65.5%), as was the fact that the registry supports behavioral and not medical research (57.1%). The most important reason for joining the registry was to encourage research on ID (97.8% rated this as important or very important), followed by a sense of obligation ("I felt I should," 66.7%) and wanting one's child to learn to help others (64.8%). Finally, when asked if they would recommend the registry to other families, 84.6% said yes, 13.2% said maybe, and only 2.2% said no. Questionnaire section 2: Why others may not want to join the registry. Approximately a third of the respondents (31.1%) reported that they know a family that might be a good match for the registry but does not want to join the registry. The reason cited most often as important or very important for why someone might not want to join the registry was that they do not have time (65.5%). However, other reasons were cited hy a majority of participants, such as not wanting to share their private information (56.3%) and not wanting to fill out forms (54.0%). Respondents endorsed several factors that they thought would encourage more parents to join the registry. The most important factor was finding out something about their own child in a research study (95.6% said this was important or very important), followed by being able to talk with the researchers (86.7%), having
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more information about what it is like to be in a research study (80.0%), and being able to sign up online (73.0%). See Table 3 for more detail. Questionnaire section 3 : Experience in research studies. Based on the survey sample, the activity rate for registry families was relatively high, with well over half (59.3%) having been invited by the registry to participate in one or more research studies prior to the present survey (i.e., in a 3-year time period). Of those families who had been asked, 87.0% actually participated in one or more studies, with 31.5% having participated in more than one study. Of those who participated in a study, 86.7% said they liked it or liked it a lot and 11.1% were neutral. We asked the families who had participated in a study through the registry how things could have been better. Only nine respondents offered ideas, but among them, a common theme was that they would have liked mote information, either before the study (i.e., about the study procedures) or after it (i.e., about their child's results or the study results). We were interested in the reasons families declined to participate in research studies when asked by the registry. Of the seven respondents who had declined to participate in a study, five cited reasons having to do with travel and time requirements. We also asked all families about reasons they might decline to participate in a research study in the future when asked. The reasons most often cited as important or very important were "it might not fit into my schedule" (66.3%) and "I might not want to drive too far"
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Table 3 Reasons for Not Joining the Registry: Mean Importance Ratings and Percentage Replying "Important" "Very Important"
Response item
Mean rating (SD)
or
% replying "Important" or "Very Important"
Please rate these reasons some families might not want to join the Registry. They They They They They
don't have time" don't want to share their private information" don't want to fill out forms'' worry about getting junk mail or phone calls'' don't trust researchers"
3.83 3.59 3.52 3.45 2.94
(1.10) (1.16) (1.15) (1.20) (1.35)
65.5 56.3 54.0 51.2 36.8
4.65 (0.67) 4.34 (0.77)
94.5 86.7
4.18 3.99 3.46 2.81
80.0 73.0 48.9 29.5
What would make families more interested in joining the Registry? Finding out something about their own child after being in a research study' Being able to talk with the researchers'' Having more information about what it is like to be in a research study'' Being able to sign up onhne*-' Being able to go to an information meeting'' Getting more money or gift cards"
(0.98) (1.15) (1.19) (1.35)
Note. Ratings were on a scale of 1 to 5, from "Not Important" to "Very Important." W = 87. "A^ = 86. W = 89. 'A^ = 90. 'A^ = 88. 'N = 91. (62.2%). A small majority of respondents felt that it might be too expensive (51.7%), and half the participants said that it might take too much time (50.0%). See Table 4 for more detail. Questionnaire section 4: Two open-ended questions. The first of the two open-ended questions asked how the registry could better reach out to minority families to join the registry. Of those who completed the survey, 75.0% offered ideas. Table 5 includes the percentage of respondents offering an idea in each of several categories. By far the most commonly endorsed approach was to use the local school systems to get the word out to potential participants, with nearly half of respondents making this suggestion. Several respondents also suggested getting help from healthcare services, organizations that serve ID or minority communities, parent or advocacy groups, or community professionals (social workers, counselors, etc.). Still others suggested going to churches, homes, or neighborhoods; providing better incentives; and using the postal mail. Less common ideas for increasing minority recruitment to the registry included using a recruiter who was
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similar to prospective registry participants (in either minority status or having a child with ID); ensuring that the research is relevant to minority groups, not overly personal, and convenient; providing advice to the potential participants about their child; and hosting a meeting to explain the registry and the research process. The second open-ended question asked respondents the types of ID-related research they felt was most needed. Sixty-three of the 92 survey respondents answered this question (68.5%). Table 6 includes the percentage of respondents offering a topic of research in each of several categories. The most common topic offered was how to improve teaching and learning (reading, writing, math, functional skills, etc.), followed by speech/language/communication and specific etiologies of ID (e.g.. Down syndrome, Eragile X syndrome, autism spectrum disorder). Also, several respondents felt that transition from school to adult roles and how to improve schools were important topics for research. Other research topics cited as important by a few respondents were emotional and social skills, behavior management, causes and prevention of
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Table 4 Reasons for Declining to Participate in a Research Study: Mean Importance Ratings and Percentage Replying "Important" or "Very Important"
Response item
Mean rating (5D)
% replying "Important" or "Very Important"
3.60 (1.49) 3.61 (1.25) 3.29 (1.53) 3.32 (1.34) 3.47 (1.23) 2.75 (1.75) 2.76 (1.65) 2.77 (1.30) 2.42 (1.07)
62.2 60.7 51.7 50.0 48.9 42.0 38.2 29.5 13.6
Below are some reasons a person mig/it say "No" when asked to be in a research study. Please rate the importance of each reason to YOU. I might not want to drive too far" It might be hard to fit into my schedule*" It might be too expensive for me*" It might take too much time' My child might not want to do if I might not have transportation" It might be hard to find child care" The testers might not be well trained" It might not be an important study*"
Note. Ratings were on a scale of 1 to 5, from "Not Important" to "Very Important." "N = 90. "TV = 89. W = 88. ID, inclusion and mainstreaming, medication to improve cognitive function, and support and resources for families. . The purpose of this article was to describe the development of a regional contact registry for
research participants with ID and assess families' perspectives regarding the registry. We surveyed registry families ahout their decisions to join the registry, their thoughts about why other families may not want to join the registry, and their experience participating in research studies through the registry. In addition, we asked for their thoughts
Table 5 Open-Ended Responses Regarding How to Increase Minority Enrollment in the Registry
Response category
% suggesting
We would like the Registry to include families of different racial and ethnic backgrounds. How do you think we can better reach out to minority families? Go to schools, teachers, PTA, special-ed directors, day cares Go to hospitals/clinics, health-care professionals Go to organizations/programs that serve people with ID Go to churches and church-affiliated groups Provide incentives, transportation, child care Go to advocacy/support groups for families with disabilities Go to their home or neighborhood Go to organizations/programs that serve minority communities Go to social workers, counselors, and caseworkers Use postal mail Other
46.4 15.9 14.5 14.5 13.0 10.1 10.1 8.7 8.7 7.2 2V1_
Note. N = 69. Because most respondents provided multiple suggestions, the total of percentages exceeds 100%.
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Table 6 Open-Ended Responses Regarding What Research on ID Is Most Needed
Response category
suggesting
Wfiat research on intellectual disability do you think is most needed? Teaching and learning Speech/language/communication Specific etiologies of ID Transition from school/teen and young-adult issues Improving schools and services Emotional and social skills Behavior management Causes and prevention of ID Inclusion and mainstreaming Medication to improve cognitive functions Support and resources for families Other
34.9 17.5 12.7 11.1 11.1 7.9 7.9 7.9 4.8 4.8 4.8 15 9
Note. N = 63. Because many respondents provided multiple suggestions, the total of percentages exceeds 100%. on bow to recruit minority families into tbe registry and wbat researcb is most needed in tbe ID field. Results of tbe registry survey converged on four tbemes. Tbe first tbeme is tbat families wbo joined tbe registry did so out of a desire to belp otber families witb ID by contributing to researcb. Also, tbey felt a sense of obligation and tbey wanted tbeir son or daugbter to learn to belp otbers. Tbus, wben recruiting families or individuals into a registry or into specific researcb studies, it may be belpful to point out tbe specific ways in wbicb tbey would be belping otbers. One way of doing tbis is to inform families wbo are being recruited about tbe important findings tbat bave come from previous researcb involving registry participants. Anotber way is to inform families wbo have participated of wbat was learned from tbe specific studies in wbicb tbey participated. Tbe second tbeme tbat emerged from tbe registry-survey results is tbat tbe main factors keeping families from participating in researcb are logistic concerns and concerns about privacy. Survey respondents suggested tbat tbe top reasons otbers may bave for not joining tbe registry are tbat tbey do not bave time, tbey do not want to fill out forms, and tbey may be wary of sbaring tbeir private information. Respondents also said tbat tbeir own actual and anticipated reasons for declining to participate in researcb studies bad mostly to do witb logistics, sucb as travel distance, time, and scbeduling. Many researcbers bave acknowledged tbat tbe extra demands of daily life for families and
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individuals witb ID are important obstacles to participant recruitment (e.g., Lennox et al, 2005; Nicbolson et al., 2013). Wben researcbers can work around participants' scbedules, reduce travel demands for participants, and assure participants tbat tbeir information will be kept private, recruitment sbould be more successful. Building trust may be particularly important for participants' concern for privacy. Tbe tbird tbeme tbat emerged from tbe survey data is tbat families wisb to be better informed about tbe nature and results of tbe studies in wbicb tbey participate. For example, respondents felt tbat if families were better informed about wbat it is like to be in a researcb study and bad a cbance to talk witb researcbers, tbey migbt be more likely to join tbe registry. Some also felt tbat tbeir own experience participating in researcb studies would be improved if tbey bad more information about tbe study procedures before participating. Consistent witb tbis, intermediaries (i.e., gatekeepers) interviewed by Nicbolson et al. (2013) felt tbat "participant factors" may keep adults witb ID from volunteering for researcb studies. Tbese include feeling anxiety about wbat tbey would bave to do in a researcb study and not tborougbly understanding tbe concept of researcb. Tbus, lack of full understanding may importantly affect decisions to become involved in researcb, in terms of botb joining a registry and deciding to participate in specific researcb studies.
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Survey respondents also said that tbeir experience in research would be better if tbey had more information about the results of the study afterwards (see also Lui et al, 2009). Receiving the study results provides confirmation tbat tbe time and effort they spent in the study were worthwhile. But also, it lets families and participants know exactly what was learned with the help of their time and effort. Nicholson et al. (2013) also reported that, according to intermediaries, if adults with ID had not received results from a previous study, they were less likely to agree to participate in a future study. Families and participants may not realize bow long it takes before a reliable report of study findings can be disseminated. However, researchers can communicate this to them and provide interim findings in laypersons' terms. Our registry newsletter is one outlet for providing this type of information. Informal feedback from families suggests that tbis is much appreciated. The fourtb theme emerging from the survey responses is that families hope that research findings will belp make daily life better for individuals witb ID and their families. For example, a majority of survey respondents said that it was important or very important to them tbat tbe registry was restricted to behavioral (not medical) research. Anecdotally, we have heard many parents say tbat tbey are more interested in research tbat belps them understand tbeir child's behavioral and learning difficulties—and how to manage them— than they are with biomédical research aimed at preventing or treating ID. Corroborating this anecdotal evidence, respondents' comments on what research is most needed in tbe ID field focused heavily on bebavioral (not medical) issues, such as how to improve teaching and learning and how to improve transition from scbool to adult life. Of course, the survey responses come from a restricted group of families with ID—those who are willing to join a participant contact registry of this particular nature, and families with relatively high educational attainment. Further, tbe most popular response wben asked what would encourage more families to join the registry was finding out something about their own son or daughter. We have seen that many parents of individuals with ID are actively committed to understanding their child's strengths, challenges, and idiosyncrasies; and they are constantly looking for ways to promote their cbild's personal growth and development. It is possible in some studies to
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provide specific, reliable information about participants to tbeir parents (i.e., studies that conduct clinical assessments or interventions). However, in many studies, the information gained is only useful in tbe aggregate. Even wben it is possible to offer feedback on individual participants, researchers are leery of giving parents information about tbeir child that may be unreliable, misunderstood, or misused. Further, providing this type of feedback outside of a clinical relationship with the participant raises ethical concerns. Still, individual feedback represents an important incentive for parents, and something for researchers to try to build into tbeir studies when possible. One of tbe aspects of the registry we felt was in need of improvement at the outset of the survey study was minority representation. Altbougb our Hispanic/Latino representation was adequate based on demographics of the four contributing states, our African American representation was too low. Thus, we asked respondents for ideas on how to recruit more minority families into the registry. The most often offered idea category was to work with schools, teachers, special-education directors, and PTAs to reach out to minority families. In general, tbis was already a main approacb for our recruitment, except that we did not work heavily with PTAs, and we did not ask specifically for help in recruiting minority families. Other ideas offered also largely replicated our past recruiting efforts, with a few exceptions. For example, we did not go to community professionals (social workers and counselors), community health clinics, or organizations that specifically serve minority communities. These sources may be belpful in future recruitment efforts. Altbough studies have sbown tbat "etbnic matcbing" of recruiter and potential participant is not itself particularly effective at improving recruitment rates of minority participants (see Woodall, Morgan, Sloan, & Howard, 2010, for a review), active recruitment strategies appear to be important (see Becker et al., 2004; Kao et al., 2011; Magana, 2000). Kao et al. (2011) found tbat active strategies (direct calls from patient or participant lists, recruiter attendance or presentation at an event, and word of mouth) were more effective overall than passive strategies (mailings, websites, recruitment flyers). However, tbe effect was particularly strong for Latino families, wbetber they had family members with ID or not. Registries aimed at recruiting older African American adults
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also have reported recruiting success using highly active recruitment strategies (Cahida et al, 2011; Lichtenberg, 2011). It is likely that the best outcome for minority recruitment can be achieved by using active strategies targeted toward minorityoriented organizations and events. A number of limitations of the present study should be noted. First, the response rate for the survey was fairly low. This may seem somewhat surprising, given that the purpose of joining the registry is to participate in research studies. Moreover, the survey could be completed from the participants' homes without a large commitment of time or effort. However, it must be noted that an explicit philosophy of the registry is to maintain contact with participants without imposing a burdensome sense of commitment. This translates to an explicit expectation that registrants are not obligated to agree to participate every time they are asked. There are few comparable studies against which we can compare our response rate. Lui et al. (2009) surveyed participants in their 50+ Registry of older adults and achieved a much better return rate of 73.6% (142 of 193 surveys completed). However, their approach was different from ours. First, because their focus was on experiences of registry participants in research studies, they included in the survey only tbose older adults from their registry who had participated in at least one research study in the last year (i.e., the most recently active ones). Thus, their survey sample of 142 reflected only about 18% of their total registry population of over 800. In contrast, we included all participants in the registry, regardless of whether they had participated in any research studies. Also, the older-adult demographic (as in the 50+ Registry) in general may have more time to complete a survey than families of individuals with ID. A survey of investigators who operate and use registries could add importantly to this discussion. Another limitation of the present survey is that neither our registry nor our survey sample was representative of the population of families with ID. To suit our research needs, our recruitment efforts emphasized children and adolescents with ID, with particular focus on Down syndrome. Thus, the registry is not representative in terms of age of the family's individual with ID, etiology of ID, and probably level of ID. In addition, although we used some active recruiting strategies, as already mentioned, we did not achieve adequate representation of African American families. Finally, the registry and survey samples of course consist of families and
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individuals who are pro-research and favorable to research participation. In spite of the study's limitations, several important findings emerged. We found that families who were enrolled in our participant contact registry have a strong desire to help others by contributing to research. They feel that research can and should make daily life better for individuals with ID and their families. However, the logistics of participating in research can be a major barrier to research participation for families. When families do participate in research, their experience is good, but still they would like more information both before and after being in a study. Thus, there are many families and individuals with ID who are enthusiastic about participating in research. A participant contact registry can be an effective tool for communicating with those families and individuals and referring them to research studies. This is true especially if researchers using the registry are accommodating to participants in terms of time and place of participation, and especially if researchers take the time to provide full information to participants both before and after the study. With careful attention to these issues, participant contact registries can be instrumental in accelerating the pace of research on ID.
References Becker, H., Roberts, G., Morrison, J., & Silver, J. (2004). Recruiting people with disabilities as research participants: Challenges and strategies to address them. Mentai Retardation, 42,471^75. Cahida, L. A., Washington, O. G. M., Lichtenberg, P. A., Green, C. R., Daniels, K. L., &. Jackson, J. S. (2011). Building a registry of research volunteers among older urban African Americans: Recruitment processes and outcomes from a community-based partnership. Gerontobgist, 51, 5106-5115.
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Dowling, N. M., Olson, N., Mish, T., Kaprakattu, P., & Gleason, C. (2012). A model for the design and implementation of a participant recruitment registry for clinical studies of older adults. Cíinicaí Trials, 9, 204-214. Fellows, L. K., Stark, M., Berg, A., & Chatterjee, A. (2008). Patient registries in cognitive neuroscience research: Advantages, challenges, and practical advice. Journal of Cognitive Neuroscience 20, 1107-1113. Hilgencamp, T. I. M., Bastiaanse, L. P., Hermans, H., Penning, C , van Wijck, R., &. Evenhuis, H. M. (2011). Study healthy ageing and intellectual disabilities: Recruitment and design. Research in Developmental Disabilities, 32, 1097-1106. Iacono, T. (2006). Ethical challenges and complexities of including people with intellectual disability as participants in research. Journal of Intellectual and Developmental Disability, 3 1 , 173-179. Iacono, T., & Murray, V. (2003). Issues of informed consent in conducting medical research involving people with intellectual disability. Journal of Applied Research in Intellectual Disabilities, 16, 41-51. Janoski, J. E., Laird, S. B., Robinson, J. D., & South-Paul, J. E. (2005). Development of a research registry for primary care communitybased research. Family Practice, 22, 358-360. Jurkowski, J. M. (2008). Photovoice as participatory action research tool for engaging people with intellectual disabilities in research and program development. Intellectual and Developmental Disabilities, 46, 1-11. Kao, B., Lobato, D., Grullon, E., Cheas, L., Plante, W., Seifer, R., & Canino, G. (2011). Recruiting Latino and non-Latino families in pédiatrie research: Considerations from a study on childhood disability. Journal of Pédiatrie Psychobgy, 36, 1093-1101. Lennox, N., Taylor, M., Rey-Conde, T., Bain, C , Purdie, D. M., & Boyle, E. (2005). Beating the barriers: Recruitment of people with intellectual disability to participate in research. Journal of Intellectual Disability Research, 49, 296-305. Lichtenberg, P. A. (2011). Generalizability of a participant registry for minority health research. Gerontologist, 51, 5116-5124. Lui, C. W., Warburton, J., & Bartiett, H. (2009). Doing good and feeling good: The experiences of older volunteers in a university research registry. Educational Gerontology, 35, 553-569.
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MacDonald, K. E., Kidney, D. A, Nelms, S. L., Parker, M. R., Kimmel, A., & Keys, C. B. (2009). Including adults with intellectual disabilities in research: Scientists' perceptions of risks and protections. Journal of Policy and Practice in Intellectvuxl Disabilities, 6, 244-252. MacDonald, K., & Patka, M. (2012). "There is no black or white": Scientific community views on ethics in intellectual and developmental disability research. Journal of Policy and Practice in Intellectual Disabilities, 9, 206-214. Magana, S. (2000). Mental retardation research methods in Latino communities. Mental Retardation, 38, 303-315. Nicholson, L., Colyer, M., &. Cooper, S.-A. (2013). Recruitment to intellectual disability research: A qualitative study. Journal of Intellectual Disability Research, 57, 647-656. Scott, J. K., Wishart, J. G., &. Bowyer, D. J. (2006). Do current consent and confidentiality requirements impede or enhance research with children with learning disabilities? Disability and Society, 21, 273-287. Swaine, J., Parish, S. L., Luken, K., & Atkins, L. (2011). Recruitment and consent of women with intellectual disabilities in a randomized control trial of a health promotion intervention. Journal of Intellectual Disability Research, 55, 474^83. Woodall, A., Morgan, C , Sloan, C , & Howard, L. (2010). Barriers to participation in mental health research: Are there specific gender, ethnicity and age related barriers? BMC Psychiatry, 10, 103.
Received 6/2512013,firstdecision 10111/2013, accepted 11/15/2013. We thank all the registry families for their dedication to advancing research in ID. We thank Kimberly Bowens and Shika Mukkamala for their help with the registry survey. Grants HD055345 and HD055345-S1 supported the registry, the registry survey, and the writing of this article. Authors: Frances A. Conners (e-mail: [email protected]. @email.com). University of Alabama, Box 870348, Tuscaloosa, AL 35487-0348, USA; B. AUyson Phillips and James C. Hamilton, University of Alabama; Jennifer D. Rhodes, Stigler Health and Wellness Center.
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