Source: UNIVERSITY OF NEW HAMPSHIRE submitted to NRP
FOUNDATIONAL PARTICIPATORY RESEARCH TO INFORM MEASUREMENT AND GUIDANCE FOR ADDRESSING FOOD SECURITY AMONG PEOPLE WITH INTELLECTUAL AND DEVELOPMENTAL DISABILITIES
Sponsoring Institution
National Institute of Food and Agriculture
Project Status
ACTIVE
Funding Source
Reporting Frequency
Annual
Accession No.
1032042
Grant No.
2024-69015-42299
Cumulative Award Amt.
$296,784.00
Proposal No.
2023-08904
Multistate No.
(N/A)
Project Start Date
Jul 1, 2024
Project End Date
Jun 30, 2026
Grant Year
2024
Program Code
[A1344]- Diet, Nutrition and the Prevention of Chronic Disease
Recipient Organization
UNIVERSITY OF NEW HAMPSHIRE
51 COLLEGE RD SERVICE BLDG 107
DURHAM,NH 03824
Performing Department
(N/A)
Non Technical Summary
People with intellectual and developmental disabilities (IDD) face unique food insecurity challenges that are not well understood. In this proposed Seed Grant project, we aim to understand food security among the IDD population. The long-term goal for this seminal work is to inform implementation guidance for intervening and measuring food security among persons with IDD. We plan to accomplish this through two main objectives. Objective 1: Conduct a formative qualitative study, in collaboration with a stakeholder advisory committee and utilizing a participatory approach, with approximately 30 people with IDD and their family members to understand their food insecurity experience. Objective 2: Build on the formative study findings to co-develop, along with the advisory committee and interviewees, a preliminary measurement tool and intervention implementation guidance intended for social service organizations. This project aligns with several stated goals and priorities of USDA and NIFA including: 1) USDA's Strategic Goal 4: Provide All Americans Safe, Nutritious Food by ensuring that food insecurity challenges of people with IDD are understood; 2) NIFA Priority B: "to investigate, assess, and recommend food and nutrition research and program interventions with the goal to achieve food and nutrition security and improve and sustain health"; 3) Using a participatory approach will explore the specific experiences of individuals with IDD to inform tailoring of approaches (Program Area Priority: Precision nutrition); 4) Furthermore, our participatory approach allows us to understand different cultural and contextual backgrounds of people with IDD (Program Area Priority: Culturally and contextually appropriate approaches).This
Animal Health Component
100%
Research Effort Categories
Basic
(N/A)
Applied
100%
Developmental
(N/A)
Classification

Knowledge Area (KA)Subject of Investigation (SOI)Field of Science (FOS)Percent
7047299209050%
6086099101050%
Goals / Objectives
This Seed Grant project will lay a foundation of learnings about food security among the IDD population and their families and develop preliminary guidance that can support future intervention efforts. Seed Grant proposals need only to contain one of the three AFRI components and this project will include the Research component. However, we aim to pursue Standard Integrated Project (SIG) funding upon successful completion of this work.The long-term goal for this seminal work is to inform implementation guidance for intervening and measuring need and intervention effectiveness among persons with IDD. We plan to accomplish this through two main objectives.Obejctive 1:Conduct a formative study, in collaboration with a stakeholder advisory committee and utilizing a community-based participatory approach, to collect and analyze interview data from approximately 30 people with IDD and their family members to understand how food insecurity is experienced in an IDD context and the unique strengths and challenges relevant to this population.Objective 2: Use the formative study findings to co-develop, along with the advisory committee, a preliminary measurement tool and implementation guidance that can guide social service organizations, including those that provide targeted services to persons with IDD and those that serve the broader community but might also touch the lives of persons with IDD, to better understand, identify, measure, and develop interventions and programming to address food insecurity among people with IDD and their families.
Project Methods
Overview. This project will be completed in two main phases, each corresponding to the two stated objectives. Phase 1 will include a qualitative formative study to understand how food insecurity is experienced in an IDD context. In Phase 2, these findings will support the co-development of a preliminary measurement tool and intervention implementation guidance. People with IDD, their families, and various stakeholders will be involved at multiple points throughout the project, including as part of a stakeholder advisory committee.Phase 1: Formative Study. Phase 1 of this proposed study will address Objective 1 through a qualitative formative study. The qualitative approach can be best classified as phenomenological research,as the project team seeks to understand the lived experience of food and nutrition insecurity in the IDD context. Key study activities are detailed below.Finalizing the Stakeholder Advisory Committee. Prior to beginning research activities, we will fill out the rest of the advisory committee. The project team will work with the current members to populate a list of potential advisory committee members. The list will be reviewed for diversity in terms of geographies represented, demographics (e.g., racial/ethnic, gender, age, etc.), and expertise (e.g., programming, research, measurement, food security, IDD, etc.). Prospective advisory committee members will be informed about the study and their roles and responsibilities. Those who agree will be included in the committee, and recruitment will end once at least ten members have agreed to join. Membership might be augmented to make up for any advisory committee members who stop participating and to account for any changing project needs or expertise gaps noticed as the project proceeds.Interview Phase. The project team, in collaboration with the advisory committee, will develop semi-structured interview guides to explore internal and external barriers and facilitators to acquiring enough food overall and enough healthy food. They will be structured around the five pillars of food security and nutrition security.Separate interview guides will be created for independent-living people with IDD and family members.IRB approval will be obtained prior to initiating recruitment and interviews, ensuring that informed consent materials are appropriate for persons with IDD. For recruitment, two interviewee groups will be considered: independent-living adults with IDD and family members who are the caregivers for someone with IDD (both children and adults). Both groups offer important perspectives on food and nutrition insecurity in an IDD context. To be eligible, interviewees must be at least 18 years old, be able to answer questions about themselves and their household and be food insecure or at risk for food insecurity (e.g., if recruited from sites, such as food pantries, likely to serve people who are food-insecure). Up to 15 independent-living persons with IDD and up to 15 family members who are the caregivers for someone with IDD will be recruited. This sample size offers a high likelihood of reaching thematic saturation within both sub-groups separately and for the full sample of up to 30 interviewees.The project team will work with colleagues and the advisory committee to identify contacts who might be interested in assisting with recruitment (e.g., representatives from organizations that work closely with people with IDD and their families who may reach people who are food insecure). Identified contacts will be asked to promote and introduce the study and share contact information with the project team. The project team will then contact the interested interviewees to screen them for eligibility and schedule interviews (or conduct interviews on the spot if preferable). Geographic and demographic (e.g., racial/ethnic, gender, age, etc.) diversity will be considered when sampling. At least 10% of interviews will be conducted in Spanish. Interviews will be scheduled for 45 minutes, and conducted remotely (e.g., over Zoom) or in-person as resources allow. This project team has found from past work that 45-minute interviews balance minimal interviewee burden and providing rich data. All interviewees will be compensated for their time with a $50 gift card. Interviews will be conducted by one of two trained researchers on this project team who have experience interviewing people with IDD and interviewing about peoples' food and nutrition insecurity experiences. The interviews will be audio recorded with participants' permission and transcribed verbatim (detailed notes will be taken for those who do not wish to be recorded). Spanish-language interviews will be conducted using a real-time interpreter (a process this project team has used with success in the past). Following each interview, researchers will discuss (and track) emerging themes. When no new topics are uncovered in two consecutive interviews, theoretical saturation will be reached.Analysis. The thematic analysis approach will utilize Creswell's "lean coding" technique.An iterative process will be used to develop the code list, themes will be allowed to emerge inductively from all sections of the interviews, and the only external framing on the analysis will be the five food security pillars and nutrition security. The advisory committee will review and provide feedback on the initial code list as well. Once finalized, two coders will dual-code 10% of the transcripts to assess agreement and aim to reach at least 80% agreement. The researchers will independently code the transcripts using NVivo qualitative analysis software.Member checking, in which interviewees are asked for feedback on the qualitative findings, is a key step in assessing validity. Themes and sub-themes will be organized into a simple descriptive table with illustrative quotes. A visual model will also be created to help convey the relationships among themes. The interviewees will be invited to a one-hour meeting to provide feedback on the findings, which will be revised as needed per their recommendations. All participants will be compensated for their time with a $50 gift card. Once finalized, the qualitative methods and findings will be described fully in a manuscript. These findings will serve as a foundation for the Phase 2 activities.Phase 2 - Developing Preliminary Intervention Guidance and MeasurePhase 2 of the proposed study will be conducted using an iterative participatory co-development process, which will be a modified process described by van Dijk-de Vries et al. (2020).The key steps will include a requirements determination step, design step, and alpha testing (i.e., expert and stakeholder review).The design will occur in close collaboration with the advisory committee and will also include the interviewees from Phase 1. The primary products will include preliminary versions of an intervention implementation guide and a survey measure of food security tailored to the IDD population. These products will be created in parallel within the same co-development process. It is important to stress that these will be preliminary tools and future work will be needed for beta-testing and finalizing (which are beyond the scope of this Seed funding mechanism).

Progress 07/01/24 to 06/30/25

Outputs
Target Audience:We presented information about our study to several groups during this reporting period with a goal of increasing interview participant recruitment. - November 2024: Virtual meeting of the American Association on Health and Disability - February 2025: New Hampshire North Country Resources Group - April 2025: Maine Association of Community Service Providers. We also met with our Advisory Committee, which includes a person with an intellectual and developmental disability and some family members of people with intellectual disabilities, three times over this reporting period (August 2024, January 2025, May 2025). Changes/Problems: Nothing Reported What opportunities for training and professional development has the project provided? Nothing Reported How have the results been disseminated to communities of interest?We shared our preliminary interview themes with our Advisory Committee in late May 2025 but have not formally disseminated any final findings. What do you plan to do during the next reporting period to accomplish the goals?We will complete our qualitative analysis of the interview data and itsassociated manuscript in the next reporting period. We will identify survey questions that align with those findings as a step towards developing a new measurement tool of food insecurity that is relevant for people with IDD. We will continue to engage with our Advisory Committee as we identify these survey questions and as we develop preliminary guidance about how such information can be used at the community level. This additional information will be written up into a second manuscript. We have one presentation scheduled for October 2025, to the University of New Hampshire's Institute on Disability,to share the initial interview findings. We also plan to develop a grant proposal that will build off of this SEED funding proposal.

Impacts
What was accomplished under these goals? We are pleased to report that our project is on schedule. We began our formative work by creating a semi-structured draft interview guide to be used to interview adults with IDD and their family members about internal and external barriers and facilitators to acquiring enough food overall and enough healthy food. We shared this guide with two experts at the UNH Institute on Disability (Ariel Schwartz, PhD and Ms. Emilia Poehlman, MSW) for their feedback on the overall content and approach as well as on question wording. Dr. Schwarz is an expert in inclusive and collaborative research with individuals with IDD. Ms. Poehlman is an expert in community-based health access programming for persons with IDD and physical disabilities. They provided feedback that was helpful in reducing and revising the set of questions and in suggesting activities that might be used to build rapport with and elicit information from study participants. In response, we revised the semi-structured interview guide to only include questions designed to capture information about the following domains: availability of food, accessibility of food, and adequacy of food. We then shared the draft guide with our Advisory Committee during a virtual meeting in the summer of 2024. The Advisory Committee included a mix of persons with IDD, family members of people with IDD, experts on food and nutrition security, and experts on programs and services that support persons with IDD. People who were not participating in an official capacity were paid $50 per hour for their participation. The meeting was recorded and transcribed so that we could have a record of this feedback. The Advisory Committee provided input into expanding our target population to also include people (with or without IDD) who handle at least half of the food tasks for a household that includes a person with IDD. This could be a roommate, family member, or partner. The Advisory Committee also helped with refining the guide to remove any bias, simplify the language, and increase the use of open ended questions. They also suggested that we add information about how people are accessing food in terms of their household budgets and nutrition assistance programs. We revised the interview guide based on this feedback and then worked on ourInstitutional Review Board (IRB) package. The IRB package was lengthy as it needed to include consent and assent processes for the following target populations who handleat least half of the food duties in a household: Adultswith IDD who do not have a guardian; Adults with IDD who have a guardian; Guardians of adults with IDD; Guardians of youth with IDD; Partners or household members of adults with IDD. We obtained IRB approval from the University of New Hampshire in October 2024. As we began recruitment, wesubmitted and were approved for two slight modificationsby our IRB. We conducted virtual interviews from November 2024 to May 2025. We met with our Advisory Committee to share some early results and further discuss recruitment strategies in January 2025. We reached theoretical saturation in May 2025 with 20 interviews (and 22 participants as some interviews included a person with IDD and their parent). Interview participants included6 adults with IDD and 16 family members of people with IDD.Two participants were Spanish speaking. Three were from the Northeast, 5 were from the Midwest, 7 were from the South, and 7 were from the West. We identified preliminary themes,shared those themes with our Advisory Committee in late May 2025, and began coding the qualitative interview data.

Publications