Knowing Your Community

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How accessible are health care facilities?

If members of your community are unable to utilize the health care facilities in the area, they will be less likely to follow up on a family health history initiative. Certain factors such as a lack of public transportation and facilities that are not in close proximity can make places such as clinics, hospitals, and rehabilitation centers inaccessible to community members. Another factor to consider is if Specialty Care is needed yet not available in your area. It will be difficult for participants to follow up with collecting family heath history information if they are unable to utilize the facilities that they need to receive proper medical care.

What challenges to patients/clients encounter when seeking care?

One huge factor in considering if people seek out health care is the availability of health insurance. If some of the population in your community is uninsured, it is less likely that they will seek treatment, follow-up, or preventative medical care. Others might be put off from seeking care if they have had a bad experience with a hospital or doctor, if they are afraid of hearing bad news about their health, or if they fear discrimination by employers or insurance companies. In addition, if it is difficult to schedule an appointment or if there is a long wait time before an individual is seen, individuals may be deterred from seeking the care that they need. Circulating information about the positive aspects of medical care, and perhaps providing a list of free or low cost clinics in your area, will help to stress the importance of seeking out medical care.

What are the main sources of health information?

It is important to know how your community obtains health information in order to effectively promote the importance of family health history. People can obtain information from health fairs, brochures, books, and the Internet, just to name a few. Others might rely on the input of family members, church leaders, or their family doctors. Discovering how people in your community obtain this information can also be key to understanding why they hold certain beliefs or make certain decisions about their health care. By distributing information about family health history through the most commonly used channels, it will help to increase the understanding of family health history and highlight its importance.

How is the term genetics viewed?

If the term “genetics” is synonymous with the term “disease” in your community, there could be a sense of fear in knowing one’s family health history. If this is the case, circulating information throughout the community about genetics might help in dispelling some misconceptions and might encourage people to become more involved in knowing their family health history.

Are there any topics or issues that are uncomfortable or unacceptable associated with health information?

It is important to respect others. The tool should be understanding to the fact that some relatives may not want to share medical histories. Also, the unfamiliarity of certain diseases may make them uncomfortable to discuss with others. In addition, some cultures are just not open to discussing health histories. These are all things to consider when making a tool.

Who in the family is the keeper of health information?

If there is one family member who has already created a family health tree, this can be particularly useful to all other members of the family to assess their health risks. Also keep in mind that there could be a relative who, although they may not have recorded health information, knows a great deal about the lifestyles of other relatives and would be willing to share this information. For a family that is beginning a family health history, it might be beneficial to designate an individual who keeps track of all of the health information, continually updates it, and can be the point person when other family members need to access this information in order to follow up with their own health issues.

Who in the family makes health care decisions?

Different family structures and beliefs can influence how people make decisions. For example, at what age do parents let their children make their own health care choices? Some 20 year olds might still rely on their parents to make decisions about their health while some parents might encourage their 10 year old to choose between different health care or treatment options. Also, some cultures might believe that only the head of the household should make health care decisions for all other family members. This will vary widely in different families and in different cultures. By knowing who in the family makes these important decisions, it will be easier to tailor informational materials and tools to specific individuals or groups.

What are other sources of health and family history information besides relatives?

The most obvious place to obtain family health history is from one’s relatives. However, it might also be possible to obtain information from friends and neighbors of relatives who may be deceased. In addition, it might be possible to obtain medical information from clinics and hospitals.

What are common family structures?

It is important to determine the types of family structures that exist in your community in order to ensure that the tool is applicable to their needs. For example, there could be families with divorced parents, gay/lesbian parents, adopted children, children from donor insemination, half siblings, and step siblings, just to name a few. The structure of the family is important to consider when collecting a family health history because one has to keep in mind that not all family members are necessarily genetically related.

What conditions/diseases are most prevalent in your community?

It is important to what diseases are most common in your area so that your tool focuses on these more than others that may be rare in your community. Some diseases are most common within certain populations. For example, Tay-Sachs disease is most common within Jewish populations and Sickle Cell is most common within African-American populations. Knowing the demographics of your area may help determine which diseases are most applicable. Another good way to find out this information is by talking to health professionals in your area.

Are primary care physicians in your community aware of the importance of family history and do they communicate that importance to their patients?

Consider if there are any informational brochures at doctors’ offices discussing family health history or if doctors ever mention family history at appointments. If not, your community might be completely unaware of what a family health history means, the importance of it, and how to take one. Providing documents to physicians about the importance of family health history might be a necessity in promoting a family health history initiative.

How widely available is genetics information?

It is important to determine if information has been distributed throughout the community and if it is easily understood by those in the community. Consider if the information is in applicable languages and if the information is at an educational level that can be comprehended by those in the community. Even if information is widely distributed, it will be pointless if it is at an educational level that is not understood by the majority of the community. Likewise, well understood information that is not highly circulated will fail to spread the word about family health history.

What are the demographics of your community?

Consider factors such as age, ethnicity, race, and religion when assessing your community. These factors could have a significant impact on the beliefs of the community members and could significantly influence health care decisions. It is also important to keep in mind that certain health conditions are more prevalent in specific ethnic groups and that presenting information specific to these conditions might encourage individuals to follow up on these prevalent health issues.