Strategies to ensure that that researchers conducting applied research studies address issues that are relevant to consumers may be simple to conceptualize but more difficult to put into practice. This paper, therefore, is intended as a guide for researchers who aim to include stakeholders in studies that can affect public policies and service systems. One frequently promoted strategy is participatory action research, in which researchers design and conduct a study in close collaboration with representatives of the various stakeholders whose lives (e.g., people with disabilities, parents, or family members) or work (e.g., service providers or policymakers) may be affected by the research. Within the field of developmental disabilities, reports have been issued on the use of participatory action research with people who have developmental disabilities (Heller, Pederson, & Miller, 1996; Sample, 1996; Ward & Trigler, 2001) as well as with culturally diverse families of children with disabilities (Santelli, Markey, Johnson, Turnbull, & Turnbull, 2001). In this paper, we discuss our experiences in the development of a study that includes the use of participatory action research. We offer suggestions for how to establish and integrate a family advisory committee as a critical component of the research enterprise. We also include results from in-person interviews conducted by the first author with members of the Family Advisory Committee and with researchers on the project regarding their experiences.
Turnbull, Friesen, and Ramirez (1998) conceptualized a continuum of six levels of family participation in the research process, ranging from families as research participants, with no involvement in the design or conduct of the research (Level 1), to families as advisors to the professional research team. (Level 6). The study discussed in this paper is at Level 4 of their continuum, which Turnbull et al. defined as researchers being the leaders of the project and family advisors serving as on-going consultants.
Context for the Establishment of a Family Advisory Committee
A Family Advisory Committee was established for a study being conducted within the Consortium for Children and Youth With Disabilities and Special Health Care Needs, a National Rehabilitation and Research Training Center funded by the National Institute on Disability and Rehabilitation Research (NIDRR). The NIDRR has been in the forefront among federal agencies in requiring consumer participation in the conduct of its funded projects; consequently, we planned for the creation of a Family Advisory Committee during the proposal writing stage.
The study includes a survey of families of children with disabilities and special health care needs in Massachusetts. We examined their experiences in accessing specialty medical care, dental care, prescription medications, durable medical equipment, assistive devices, and medical supplies. Although our research team has expertise in survey research methods, in health services research, and in issues facing families of children with disabilities, we wanted and needed the expertise of families of children with special needs on the project. In particular, we wanted to ensure that we asked relevant questions, used appropriate and understandable language, and designed the study in a way to maximize the probability of participation. Moving from these goals to establishing a functioning advisory committee taught us many lessons that are relevant for other researchers and potential research advisors, as discussed below and summarized in Appendices A and B.
Clarify what is expected of the family advisors
It is important to determine the specific aspects of the research project in which the family advisors will contribute. For example, we wanted our family advisors to review critically the drafts of the information packets we developed for potential study participants, to assist with the design of survey questions (particularly the wording), and to brainstorm with us about the kinds of analysis questions we would pose after data collection. We also asked them to offer interpretations of study findings and participate in their dissemination. We did not expect them to be involved in collecting the data, conducting the data analyses, or writing reports. By specifying in advance the ways in which family advisors can be useful consultants to the project, we were able to describe the kind of work they would be doing and the amount of time it would take, two critical issues in the recruitment of family advisors.
Recruit family advisors who are similar to the kinds of families to be included in the research
Family Advisory Committees are most effective if the members are representative of the potential study participants. If the research sample is expected to include members from a variety of cultural or ethnic backgrounds, or (as is the case here) families of children with diverse disabilities and ages, it is important that the committee include similar diversity. Our family advisors had children who ranged in age from 6 to adulthood and who had a variety of special health needs or disabilities.
Recruit a sufficient number of family advisors
It is important to establish a group that is large enough to provide diverse viewpoints but not so large as to limit the amount of participation that can be achieved at meetings of the advisors and the research team. We initially invited 7 mothers of children with special health care needs to participate on our Family Advisory Committee, including 3 mothers from ethnically diverse backgrounds. Like other investigators (e.g., Ward & Trigler, 2001), however, we have found that attendance at meetings (which were scheduled with the input of the family advisors) can be problematic. The problems we encountered included unforeseen changes in health issues of their child with special needs, problems with transportation, and last-minute trouble with child care, all of which could, and did, affect the ultimate participation of individual family advisors in scheduled meetings. We recognized the need to expand our committee to ensure that there were at least 4 advisors at each meeting.
Be very clear about the time commitment expected of family advisors
Before recruiting family advisors, it is important to know how often the committee will meet, where and when it will meet, and how long each meeting will be. It is also important to know in advance if meetings will be held during the day, evening, or on weekends. The family advisors for this project lived within a 30-minute drive of the project offices and were available for meetings on weekdays. Our Family Advisory Committee meets quarterly. The meetings are scheduled for a 3-hour period during mid-day so that the family advisors can be home before their children return from school.
Pay family advisors as consultants
We view our family advisors as consultants, not volunteers. We paid a flat rate for each meeting, which was generous enough to cover their time, travel, and child-care expenses. We also provided lunch at each meeting in order to increase opportunities for more informal discussions and to create a friendly context for the meeting.
Be clear about the qualifications or expertise needed
Our family advisors were not expected to be “junior researchers,” and, thus, we did not explicitly recruit parents who may have worked on other research projects, nor did we seek “parent professionals” who were affiliated with parent advocacy organizations. The primary qualification we sought was the personal experience of being a parent of a child with special health care needs. Most of the parents who agreed to participate had prior experiences on other parent committees related to their child's school or to their child's specific disability. However, no one was recruited as a representative of a specific parent advocacy organization. It is helpful if family advisors have an interest in and curiosity about research and its place in social policy. Providing information about the important role of parents in research helps them make educated decisions about participating as an advisor for a research project.
Prepare the research staff for effective interactions with the family advisors
The research staff members need to be sensitive to the fact that family advisors do not have expertise in research issues and that issues discussed at the meetings must be presented in lay language and in such a way that family advisors can participate fully in the discussions. Further, the research staff must be open to hearing critical comments about the work being reviewed and willing to make significant changes to study materials based on the advisors' feedback. In short, research staff have to empower the advisors to suggest changes and then to actually implement these changes. The researchers also need to demonstrate to the family advisors that their input was used frequently, which can be accomplished by giving them revised versions of documents that they reviewed previously.
Plan well in advance for each meeting
It takes time to schedule a meeting that all family advisors and research staff can attend. In our experience, scheduling needs to start at least 3 weeks in advance. We send packets of materials to be discussed at the meeting about a week in advance, along with preliminary questions we hope to discuss at the meeting.
Hold the meetings in a location that is accessible for all the attendees
Ask advisors in advance about accommodations that will make their attendance and participation in the meeting convenient and comfortable.
Tasks of the Family Advisory Committee
Brainstorm with the research staff to identify relevant areas of study
When this project began, the research staff outlined various topics to be addressed in the survey, including access to specialty medical care, prescription medications, durable medical equipment, and assistive devices. The family advisory committee suggested that the survey would be incomplete without a series of questions about access to medical supplies and dental care, both of which were then developed with the input of the family advisors and added to the survey.
Review documents to be used in the study
All drafts of documents to be used in the study are reviewed by our Family Advisory Committee, both at home and in group discussions at quarterly meetings. The importance of their feedback cannot be underestimated. For example, the research staff asked the family advisors to review the first draft of the information packet we planned to send to prospective study participants. The packet included a letter of invitation to participate and a question and answer sheet about the study. The research staff worked very hard to anticipate the questions and concerns prospective participants might have and addressed each question in the information packet. The family advisors' comments included:
It's too long; no one has the time to read this much detail in an initial mailing.
Make each item in the packet no more than one page in length.
Use bullets to summarize information and be sure the most important information is also the most visible.
The result of their feedback was the creation of a completely re-designed and substantially shortened information packet.
Assist with the interpretation of study findings
The current study is an extension of a survey of parents of children with special health care needs that was conducted in 1999–2000. Drafts of papers, articles, and presentations were sent to the members of the committee for their review and comments. For example, family advisors were key reviewers of a series of fact sheets that present research findings (available at www.consortiumnrrtc.org).
Parent and Researchers' Experiences
In-person interviews were conducted with 4 members of our family advisory committee about their experiences. When asked about how they would describe the relationship between parents and the research staff, one commented, “I think the research staff has been genuinely interested in and thankful for the input from the parents.” Another noted, “Everybody seems like they are equal partners. Everybody has a vested interest. It's very nice, calm, relaxed, fun, and supportive.” Finally, one mother said, “It's very respectful. I think the project staff really respect what the parents have to say. They are very open about what they are looking for and what they want us to do.”
We also asked about the challenges they have faced as members of the committee. One noted that “it has been very difficult to coordinate child care. The other issue is being overextended with other things in my life.” Another noted that “I'm still not used to the volume of paper I get from the project to read. I just try to read the highlights. It's great information—it's just so much!”
There are spill-over effects for parents from their participation, particularly with respect to their advocacy efforts for their own children. One commented, “It makes me feel more confident to stand up and try to do something to make things better for my children and know that I'm not alone.” Another noted that she is now,
more inclined to complain to the employer about health insurance. I don't think I would have thought to do that if I hadn't been in this group. I am willing to speak out. The group has helped me be aware of other services that are out there.
There are other personal benefits as well. One mother noted:
It's the most intensive feeling that my opinion really counts. It matters. Someone is really listening to what I'm saying. It kind of makes my own child's disability have more meaning if I can help others that are going through the process.
Our family advisors also gave advice on how to make such committees work well. One suggested, “Send materials in advance of the meeting and highlight the most important sections for us to read. It's too much to read large volumes of information.” Another said, “Listen to what we have to say. Don't judge what we're saying. Listen to us like you would to any other professional.” Another suggested, “I like the idea of conference calls and e-mails. You might be able to get broader participation from other parents who are not available during the day.”
We asked similar questions of the research team. Regarding the relationship between the researchers and the Family Advisory Committee, one staff person noted that,
I feel like they are very invested consultants. The parents are not responsible for the outcome, but they are responsible for giving us the best advice they can. They are very generous with their input, but it's up to us to make the best use of it.
Another staff person noted, “It really is collegial. They are pretty up front and blunt in their feedback to us, and I really appreciate that.” Another said,
I think it's positive in part because of the groundwork of making sure that the parents are paid, making sure they get materials in a timely manner, and that it's clear that we, the project staff, are not working with an advisory group because we “have” to, but because we want to.
Project staff also commented on the challenges of working with a Family Advisory Committee. One noted that the challenge of
finding the right zone in which to work with them . . . not overwhelming them with some of the technical details that we know affect what we do, but which seem unnecessary to try to explain. We have to juggle between where they can be most influential and the sort of technical constraints by which any research project is bound.
Another noted the potential for
conflicts over the interpretation and meaning of findings. I know our findings can resonate with one's political beliefs and sometimes even one's own core values. Having both consumers and researchers in the room adds another layer of potential push/pull conflicts.
The research staff was asked how their work has been affected by the Family Advisory Committee. One noted that “I've revised everything from research questions to interpretations to writing styles on the basis of our work together. I always come away from our meetings feeling refreshed and much better grounded in what I am doing and why.” Another commented that “They clearly reshaped how we are introducing the study to potential participants and they had a real strong impact on the topics we are pursuing.” Finally, one relayed that “One of the papers that I wrote came directly out of a conversation I had at one of the advisory committee meetings.”
We asked the research staff what advice they had for others interested in establishing a Family Advisory Committee? One noted,
You need a point person—someone who has an intense relationship with parents to help manage the logistics and field any questions or issues that might make parents feel uncomfortable participating in the larger group. Pay parents for their participation—they are your consultants, your experts.
Another noted that the importance of “listening to them and trying to follow-up on what they are saying so that it's really clear you are paying attention and trying to learn from them.”
Structuring a family advisory committee for a research project requires planning that should begin in the early stages of project development. Choose family advisors who have an interest in research and who are at a time in their lives when they can incorporate the demands of such involvement. The knowledge and life experience that family advisors bring to research adds credibility, depth, and meaning to the research. Family advisors have the opportunity to see the field of disabilities from a different point of view and to learn about how research can inform social policy for children with disabilities and their families. This is a winning arrangement for all who participate.
Checklist for Forming an Advisory Committee
Develop a specific list of tasks that advisors will be asked to do
Recruit advisors who resemble the study participants and who are at a time in life when they can incorporate the demands of committee involvement
Strive for diversity in terms of key characteristics that may affect advisor's perspectives on the research project (such as types of conditions and sociodemographic characteristics)
Identify one key project staff member to be the liaison for the committee (e.g., to handle all recruitment, scheduling, reimbursement) to create a personal connection between the project advisors and staff members
With the advisors, decide on the most convenient time of day to meet
Provide compensation for the advisor's time and develop and share clear policies on payment
Checklist for Organizing Advisory Committee Meetings
Ensure that the meeting room is accessible to all participants
Send materials to the advisors in advance, so that they have a chance to prepare before the meeting
Confirm the meeting date and time a day or two in advance
Share follow-up materials, either via mail or at subsequent meetings
Provide name tags to all participants (advisors and staff members) for several meetings, until everyone knows each other
Offer refreshments to everyone, creating a more social environment
Have regular telephone contact with advisors between meetings. E-mail is useful and convenient, but is no substitute for personal contact
Authors: Dorothy Robison, BA, Research Associate ( firstname.lastname@example.org) and Marty Wyngaarden Krauss, PhD, John Stein Professor of Disability Research, Heller School, Brandeis University, PO Box 9110, Waltham, MA 02254-9110