Step outside the box to serve minority groups
Finding new ways to communicate well
The demographics of American cities continue to change. The faces of the individuals you serve are increasingly diverse. The languages your clients speak may be unfamiliar to you. Keeping step with those changes requires putting your proven methods of community outreach on the shelf and taking one giant step outside your comfort zone.
"We have always served a predominately Caucasian population. African-Americans have come to us but not the number we would like — not the number we knew we could help," notes Linda Kristofitz, MA, family resource coordinator for the St. Louis Chapter of the Alzheimer’s Association.
"We were frustrated because we had so many services to offer geared to assisting in the earlier stages of Alzheimer’s disease. Yet we were finding that with many of the diverse cultural groups in our area, if we ever heard from them it was only after a crisis," adds Terri Sellers, executive director of The Vine at Cedar Ridge, a health care provider with nursing homes and assisted-living facilities in Broken Arrow, OK. Sellars is an active board member with the Oklahoma State Chapter of the Alzheimer’s Association.
Kristofitz and Sellers agree that the first step to serving any population is to identify barriers that prevent individuals from seeking help or prevent your services from meeting their needs. If your target population is unfamiliar to you, hitting the library and the Internet to review the available literature is one logical solution. However, there is no substitute for going directly to the communities you wish to serve for insights.
"Our first step was to read articles in the literature that would give us clues on how to develop an awareness campaign and support services that would appeal to ethnic groups in our area," says Lisa R. Watkins, RN, MS, nursing instructor at Tulsa (OK) Community College and an active board member of the Oklahoma Alzheimer’s chapter. "That was just a first step. We also surveyed members of our support groups and family members of individuals placed in dementia care programs to ask how and when their family member received a diagnosis of Alzheimer’s and when they first sought help."
To plan effective interventions, you must go directly to the communities you want to serve, agrees Kristofitz: "Talk to providers in the community. Include members of the communities on your boards."
Through their research, Watkins, Sellers, and Kristofitz identified barriers to care and developed some new approaches for reaching out to culturally diverse populations in their communities. Here is what they found, along with some suggestions for developing multicultural outreach programs:
1. Understand cultural barriers to care. "Both through my own experience and my research, I found that many ethnic groups are reluctant to seek outside help for what they perceive as family matters," says Watkins. "For example, African-American families often take a team approach with daughters, granddaughters, and even nieces or cousins sharing caregiving responsibilities. We found the same extended family approach is common in Hispanic families." (For more on serving Hispanic patients, see p. 184.)
Kristofitz agrees. "We found through our own experience and research that many African-American families feel that they should handle situations within their own families," she says.
2. Develop new educational materials. "It’s not just language you have to consider, but also literacy levels and also your illustrations," notes Watkins. "Do the materials you develop include pictures that look like the population you’re trying to reach? If not, they won’t be effective educational tools."
Reflect the community
The Oklahoma Alzheimer’s chapter formed a multicultural committee composed of community leaders of the groups they were trying to reach more effectively with their services. "It’s not just language. You also have to consider education level. And, we found with Native American groups that written materials are not as effective as oral communication," says Watkins. "Many Native American tribes have no written language. Lang uage is passed down orally. In addition, some tribes have such special dialects that you have go directly to tribal elders and find a member of a specific tribe to assist you in your efforts."
Kristofitz says one look was enough to see what was wrong with the materials currently used by the St. Louis Chapter. "Our publications had too many white faces in them to appeal to the African-American community we were trying to reach," she notes. "We redesigned them to have more African-American pictures. We realized that the current materials didn’t reflect an interest in the community was wanted to serve. We also realized the materials were written in a literacy level that was too high. We redid them all on a fourth-grade level and eliminated all the professional jargon."
It is also important to turn to community members when developing your programs and services. "You have to go to the community directly to identify needs. Don’t make assumptions about services. Talk to providers and others in the communities you want to serve, ask them to join your boards and committees, and listen to what they have to say," Kristofitz urges.
3. Find new distribution methods for your materials and services. The St. Louis and Okla homa chapters found that many cultural groups identify strongly with their spiritual leaders and turn to them for advice on many matters. "Many ethnic groups identify strongly with their churches, temples, and spiritual leaders," says Watkins.
"We found that spiritual influences are very important to many groups, including Afri can-Americans, Hispanics, and Native Americans. They turn to spiritual leaders for support on many issues, and this is a wonderful partnership opportunity. You have to realize that spiritual leaders know their individual members. Those leaders can be a great source in helping you identify families in need," she explains.
The Oklahoma chapter recently developed an outreach effort targeted to spiritual communities. The chapter asked members of our board to identify churches, temples, and spiritual leaders in their communities and then launched a campaign called "Four Points in Four Weeks."
"I think what people read in their church bulletins they take seriously," Sellers says. "We basically developed four reproducible educational pieces geared at providing information on the early identification and diagnosis of Alzheimer’s disease and sent them to church and spiritual leaders with a cover letter asking that these groups consider including the pieces in their weekly bulletins or newsletters.
"We don’t know if they will publish everything we’ve sent, but we’ve been encouraged by the response. Each piece includes a referral back to the Alzheimer’s Association for additional information and support. We’ve had calls from many spiritual leaders expressing an interest," she says.
To encourage spiritual leaders to share the materials with members of their communities, the Alzheimer’s Association explained that early withdrawal from social activities, including church, was one of the early warning signs of Alzheimer’s. "We explained that church was one of the first places many individuals with Alzheimer’s withdraw from early on. This is usually due to embarrassment over memory loss," says Sellers.
In addition, the Oklahoma chapter polled spiritual leaders to ask if there were issues involving Alzheimer’s they would like to receive more information about. "The response from spiritual leaders has been very positive. We’ve already planned a series of educational workshops."
Issues spiritual leaders expressed the most interest in include:
• how to help families manage and cope with difficult behaviors;
• what community resources they could refer members to;
• basic information on the disease process.
4. Hire staff and assign them to work with ethnic groups. "One of our biggest decisions was to hire a new staff member to work with our African-American communities," says Kristofitz. "We hired an outreach coordinator who herself is African-American. She goes out into the community and does work with churches and agencies who have already established a presence in the communities."
5. Eliminate financial/bureaucratic barriers. "We found a barrier in our respite program that we hadn’t even considered," notes Kristofitz. "The program was set up so that families paid upfront and then were reimbursed later. Now, we allow families to hire a family member or friend to provide respite care — that’s been a big benefit. We’re also trying to contract with home health agencies to eliminate the need for that upfront payment."
In addition, Kristofitz found that many ethnic groups were simply overwhelmed by the paperwork involved with receiving care. "There were so many service providers offering them assistance, each requiring a different set of papers to complete, that to have one more agency come and offer programs and service is just too overwhelming," she notes. "They also have that distrust of predominately white professionals. There is a general perception that white professionals have a lack of respect for their culture."
Kristofitz adds that their new dedicated outreach coordinator has helped the St. Louis chapter address some of those issues.
6. Identify and address professional barriers. "We found that there is a lack of education within the professional community about Alzheimer’s issues," notes Sellers. "We’ve started a grass-roots effort to encourage the medical community to establish a cognitive baseline for all individuals — just like vital signs — and reevaluate over time to identify early warning signs of Alzheimer’s."
Through her Internet research, Sellers found simple tools that can be administered in the physician’s office by support staff. "We know when Alzheimer’s is very apparent, but we don’t have good data for when it begins. The first step in improving Alzheimer’s care is to improve early identification, and that has to come from educating professionals to recognize warning signs." (For more on an early screening tool, see story below.)
The Oklahoma chapter is actively working to pass legislation mandating dementia education as part of the training required for certified nurses’ aides. "That may not help us with our early identification campaign, but it will assist community members once a diagnosis is made and dementia patients enter the health system."
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