Engaging diverse communities in health-related services
Through the Family Wisdom project, Family Voices partners with diverse communities, honoring and engaging families’ and communities’ wisdom and strength in health-related services and research to reduce disparities, discrimination, oppression, and stigma.
Family Wisdom is family-centered
- Sharing diverse family perspectives with researchers and healthcare providers.
- Improving family-centeredness and cultural appropriateness of health-related services and research.
- Identifying research questions that are relevant to diverse patients and families.
Family Wisdom is innovative
- Building capacity through Project ECHO telementoring sessions
- Building research capacity in the patient and caregiver community.
- Establishing new partnerships between researchers and patient and family leaders.
Family Wisdom is multicultural
- Celebrating culture and tradition.
- Partnering with diverse patient and family leaders to design activities around their communities’ strengths and needs.
- Partnering with researchers to build multicultural, community-engaged research teams.
Alaska Stone Soup Group (Anchorage)
Stone Soup Group is the Family to Family Health Information Center for the State of Alaska. We support parents caring for children and youth with special needs by providing training and information services. Our focus population is parents of children with special healthcare needs, whom experience intellectual disabilities themselves. Parent with disabilities have additional barriers in accessing health care and following through on recommendations from physicians and specialists. Oftentimes parents do not have access or qualify for services themselves, and they may also have additional barriers, such as homelessness, lack of transportation and poverty. These barriers mean parents may need additional support and time to process the information provided, they may need information presented in different modalities or modified materials to reinforce the information provided.
Our cultural brokers will be parents experiencing a disability. The cultural broker will start by reviewing our current practices at Stone Soup Group and suggest ways to improve our service delivery to the target population. We will expand the project to inform ways in which the health care system in Alaska may improve communication to the target population. This is especially important as the health care system in Alaska is diverse, fragmented and often difficult to navigate.
Our project initially focuses on internal practices for Stone Soup Group. Information learned from our project will inform our practices for Parent Navigation provided on a statewide-basis and the health care system in Alaska. We will focus on healthcare literacy, assuring parents understand material and information provided and recommended by medical home especially in the fragmented and diverse health care systems in Alaska.
We actively participate in the bi-monthly Family Wisdom learning collaborative. Currently we are recruiting our cultural brokers, parents that experience a disability, to participate in our project and to identify additional barriers created by Alaska’s unique health care system. We are also brainstorming ways in which this project will inform future training or materials produced by the F2F. This may include training medical staff and practices on ways to accommodate and communicate effectively with parents experiencing a disability.
Stone Soup Group website: https://www.stonesoupgroup.org
PATH Parent to Parent/Family Voices of CT (Northfield)
PATH Parent to Parent/Family Voices of CT (PATH/FVCT) is using the Family Wisdom project to focus on the South East Asian American (SEAA) community of Connecticut, including families originating from Vietnam, Cambodia, Laos, and Thailand. We are focusing on barriers and challenges in health disparities, healthcare access, cultural diversity and linguistic barriers(challenges).
Our current activities include: 1) meeting with cultural brokers from each identified SEAA community to develop strategic plan; and 2) developing a survey questionnaire to derive the most important challenges to address for this community.
In the future, we will work closely with cultural brokers and representative from each SEAA community to begin to implement a strategic plan which will include:
-Collect data from focus groups.
-Develop program/services for each community based on data collection.
-Select a pilot SEAA community to test implementation using the Plan-Do-Study-Act (PDSA) model. PDSA will include post evaluation of community.
-If successful, move on to pilot in next community.
-Develop summary to share with SEAA community.
Idaho Parents Unlimited (Boise)
Idaho Parents Unlimited, Inc. (IPUL) is the statewide organization which houses the Idaho Parent Training and Information Center, the Family to Family Health Information Center, Idaho Family Voices, and VSA Idaho, the State Organization on Arts and Disability.
The Family Wisdom project is supported by the Family to Family Health Information Center and through our work with National Family Voices. Our project is in its fourth year, and it aims to develop culturally competent, meaningful family engagement in exploring whole family health surrounding nutrition, activities, and lifestyle. The project has involved small focus groups from the southwestern region of Idaho who are primarily Spanish speaking. They have shared barriers to accessing health care, barriers to accessing physical activities, and barriers to accessing nutritional foods. They have also provided a wealth of information about cultural traditions, family life in Idaho, and generational concerns. The groups have begun to merge, and they have created a Spanish speaking advisory committee to assist our organization in better assisting other families. They are also expanding on their knowledge and looking toward reducing some of their identified barriers together. They are very interested in becoming empowered to create change in their own communities, which is extremely exciting. The groups have also worked with some of our partnering agencies to develop conferences, and some have branched out to get involved in policymaking efforts.
Because Boise is a refugee settlement community, our advisory committee has expressed interest in expanding their group by bringing in families from other cultures. In the beginning of the project, feelings of isolation and depression were identified. These families have discovered that by being part of this group, they are not experiencing as much of those at this time. They have developed long term relationships, and they realized they have much to learn and share with others. IPUL plans to support the group in their future plans, which include developing a cookbook that incorporates the foods and stories of their culture and traditions.
Idaho Parents Unlimited is on the web at: http://www.ipulidaho.org
Family Voices of Kentucky (Lagrange)
Kentucky Family to Family Health Information Center (Louisville)
Missouri Family-to-Family Resource Center (Kansas City)
Parents, Let’s Unite for Kids (Billings)
Family Voices of North Dakota (Edgeley)
In North Dakota we have been witnessing much concern for many of our families that are from diverse backgrounds. Whether it be through a medical provider, or if it is family support, we see an increase in oppression and in some ways families who feel persecuted simply for being from another culture.
We know and witness the needs for our families are rising. We know there is much work to be done.
Where to start? Building community capacity is a priority for us. While North Dakota has not always been a diverse state, the reality is our families of many cultures and races have a voice that needs to be heard.
In order to build that capacity, we also know the reality of building capacity with a small budget.
We will start smaller in developing a “Wisdom Council for FVND” to develop cultural brokers on an ongoing basis, to keep the finger on the pulse of what is happening in our state, to give a voice to those who have felt oppressed and discriminated against, and plan activities accordingly from the feedback that we receive. Families simply should not have to worry that because they are from another culture that they will be turned into children’s protective services, if they have a child or youth with special health care needs.
I have learned much from the group from across the country who have this lived experience and are willing to share what they have done to build community capacity for research partnerships.
Parents Reaching Out (Albuquerque)
The priority community for our project is grandparents raising grandchildren with disabilities or special healthcare needs. Building upon earlier initiatives to develop family leadership among monolingual Spanish speaking and Native American families, we are intensifying our outreach and connections with diverse grandparents who are raising grandchildren with disabilities or special health care needs across the state of New Mexico. We look forward to ensuring that grandparents raising grandchildren have access to information, support and resources to advocate for their grandchildren and to serve in leadership roles in related groups, commissions or in other arenas
Web link: parentsreachingout.org
Ohio Family to Family Information Center (Cincinnati)
Parent Education & Advocacy Leadership Center (Pittsburgh)
Family Connection of South Carolina (Columbia)
Texas Parent to Parent (Austin)
Center for Family Involvement @ Virginia Commonwealth University
Organization Website: www.centerforfamilyinvolvement.org
Organization Contact: Dana Yarbrough email@example.com
Area of Focus #1: Diverse adults with developmental disabilities
Activities: Brought together a diverse group of 12 people with developmental disabilities and family members to develop two on line modules for healthcare professionals on best practices in 1) communicating with people with disabilities so they can make informed healthcare decisions and on designing accessible environments; and 2) being culturally agile through the respect of the intersectionality of cultural identities of patients with disabilities. Both modules were piloted with 120 medical students at VCU
Future plans: By June 2018 finalize two modules; work with VCU distance learning department to post modules (CMEs/CEUs available); and market availability nationally (AAP, AMCHP, AMA). By October 2018, collect data on module usage; consider the development of a 3rd module (topic to be determined); and develop module or seek funding for module development
Contact: Angela West firstname.lastname@example.org
Area of Focus #2: Arabic families of children with developmental disabilities
Activities: To model a process of localization (best practice in translating information that is not simply english to XX language), bring together a small group of Arabic families to discuss disability services and systems and how to best ‘translate’ information for the Arabic community on these services/systems using their languages idioms, preferred formats, etc.
Future Plans: Convene group of Arabic families; decide on what service or system needs to be discussed on video (and how it will be discussed – i.e. what information is being ‘translated’); videotape families ‘translating’ information for other families; edit and close caption video; post on CFI social media platforms and website; and disseminate nationally through Parent to Parent USA and Family Voices
Contact: Amel Ibrahim email@example.com
Vermont Family Network
Vermont Family Network has been working diligently over the past several years to build connections and relationships with families in our former refugee communities in Chittenden County. It’s been a slow process as we continue to work to earn trust and learn about what it means to successfully engage these families. Recently we lost two of our employees from the communities due to grants ending. They were able to help us as excellent cultural brokers, bridging our organization to the communities. We would like to avoid losing the ground we gained.
We have learned that the refugee communities are close knit, and support their neighbors on a daily basis. Because of this, and also that capacity is limited for many of us who support these families, we are hoping to build a peer model of support. We hope to train a few at a time who can then return to their communities to share their new knowledge and skills, and support others to begin their own journey of learning.
Using a strong foundation from our long-running Vermont Leadership Series training, we will customize it to an entry level training for this population. Our goal is that participants gain confidence, skills, and knowledge that they can share with others in their communities. They will also be able to refer some of those individuals to us as future training participants.
Ultimately, we would love to be able to track this peer support activity so that we can have evidence as to its effectiveness.
Partners for Action Voices for Empowerment (Tacoma)
West Virginia Parent Training and Information (Buckhannon)
|Big Picture||Patient and Family Engagement: A Partnership for Culture Change|
|Execution||Community Tool Box||Exhaustive compilation of tools for use in community engagement and partnerships|
|A Roadmap for Patient and Family Engagement in Healthcare Practice and Research|
|Funding||Patient-Centered Outcomes Research Institute||Funder for the Family Wisdom Learning Collaborative|
|Nonprofit Finance Fund|
|Plain Language||Plainlanguage.gov||A resource for improving the quality and accessibility of written communication|
|Remote Access||Zoom||Low-cost, low-bandwidth video conferencing|
|Training||National Center for Cultural Competence Leadership Institute||Leaderships academies and webinars for cultural and linguistic competence|
Email firstname.lastname@example.org if you are interested in learning more about the Family Wisdom project, or making contact with any of our partners.