The Cultures of Care

Article excerpt

Families, healthcare professionals and health policy makers and administrators have distinctive cultures-ways of viewing the world-that affect their priorities and actions in the care of elders or ill people. Culture in this sense includes but goes beyond ethnicity, religion or language; it focuses on a shared understanding of principles, values, attitudes and behaviors common to members in a group-whether that group is a family, a professional discipline, an institution or an agency. This concept, we believe, illuminates many of the tensions and conflicts that occur in healthcare, especially those that involve family caregivers.

FOUR FAMILIES

Imagine the following scene: Four families are seated in a nursing home (or hospital or agency) waiting room. They are speaking quietly but there is an air of anxiety in the room. If you could listen in, you would hear four different languages, including varieties of English. The families are from different ethnic groups: white, Asian American, African American and Latino.

One large group is multigenerational; the teenagers hold their own conversations, all the while attentive to the needs of the elderly woman who seems to be their grandmother, or perhaps their greatgrandmother. Another group is made up of just two people: an older couple who seem to be married but who might be brother and sister. The third group includes an elderly man and his adult daughters and their husbands. The fourth group is solely female. The members of these four groups have different styles of dress. Some are obviously more prosperous than others, and some wear religious symbols as pendants or pins.

What is the most distinctive characteristic of these families? Someone coming into the room might say that it's their language, their ethnicity, their social and economic class, or their religion. All these factors are important, of course, but what is often missed is that the characteristic distinguishing these individuals from the professionals they encounter in the formal healthcare and social service system is that they are families. As people tied to each other through blood, marriage or shared commitment, their priorities and values differ in some significant ways from those of the professionals with whom they will now begin to interact.

Nearly all the multiple versions of caregiver burden scales focus on caregiver stress that results from either the caregiver's lack of social support or the relationship with the care recipient. The "Caregiver Hassle Scale," despite its name, deals only with hassles that occur between caregivers and care recipients. These scales hardly mention one of the major stressors for caregivers: unsatisfactory relationships with agents of the healthcare system, whether they are doctors, nurses, social workers, hospital or nursing home administrators, or insurance personnel.

Although healthcare professionals and family caregivers have the same broad goals for a patient or relative, the relationship between them is often strained and sometimes hostile. Why is this so? Usually the answer from professionals is that a particular family is "dysfunctional" or that the family members "don't understand" the prognosis, the treatment or whatever has become the issue of the moment. Families are criticized both when they are too involved and when they are not involved enough. For their part, families may describe a particular doctor or nurse as "cold," "uncaring" or "uncommunicative," and a social worker as "only interested in getting my father out of the hospital." But placing all the blame on individuals or personality conflicts misses a larger point: Families and professionals have different assumptions, values, attitudes and behaviors-in other words, they have different cultures.

CULTURAL DIVERSITY

The idea of cultural diversity has come to be equated with immigrant or minority families, yet all cultures, new and old, minority and majority, have special characteristics. …