Make Transitioning a Process
How Family Affects Transitioning
HIV-infected youth and their families, who are coping with a complex chronic illness, are exceptionally vulnerable to the challenges that can arise when young patients transition from a family-oriented system of care to one in which they are expected to take on more responsibility for managing their own health. Providers should be aware that family-centered care is often congruent with the cultural ideals and practices of Blacks/African Americans, Latinos, American Indians/Alaska Natives (AI/ANs), and Asian Americans/Pacific Islanders (AA/PIs). Family ties are important among these groups, and family members of HIV-infected youths from these groups are often integral parts of their health care process--and they are often reluctant to accept diminished roles in that process.
Among many AA/PIs, the family unit is considered to be more important than the individual members.3 In addition, filial piety (reverent respect toward parents and grandparents) is a highly regarded concept. According to these beliefs and values, individual needs and well-being are secondary to those of the family as a whole. Respect for the family (particularly for one's parents) is inculcated in children from a very early age and is reinforced throughout their education.4
Depending on the family's cultural perspective on health care, when young HIV-infected patients transition, it may be important to determine ways in which the family can remain involved. In some instances, it may be important to slowly decrease the level of family involvement while maintaining the family's importance in the young person's life. If a young patient and his or her family members are not properly prepared for these and other transition issues, the patient's health could suffer. A strong provider-patient-family relationship is invaluable at this time. For Black/African American families, this well-established relationship will be extremely important during the transitioning process. At this point in care, it is very likely that the family has established a trusting relationship with the current healthcare provider. Indeed, the provider may in some ways be a part of the family. The provider may be one of the few people, if not the only person, who knows the family is living with HIV infection. Because of the Black/African American community's experience with racism and discrimination in the health care system, Blacks/African Americans may be reluctant to trust another provider. Adopting a multisystems approach can help to unearth and address family concerns. Providers may want to coordinate meetings and discussions that include the individual patient, the family, the current provider/team, and the new provider/team. Eventually, the family should be supported to take the lead in requesting meetings of the appropriate people as needed to facilitate transitioning. This will help to build bridges from one health care team to the next.
Notably, many HIV-infected youth are without family and must cope with their illness alone. Providers should assess how much family support a child really has. If there is little or no family support, the patient will need assistance developing these coping skills alone. This may require extensive support from the clinician as many of these youth may be at a disadvantage because of the social and cognitive delays resulting from their disease.
The demanding nature of managing a serious chronic illness often becomes the organizing principle of a family's collective life.5 Terms such as "disrupting," "distracting," and "interfering" are commonly used by families to describe the impact of HIV on their lives. The belief of AA/PIs that the needs of an individual are less important than those of the family can have a serious impact on HIV care. An individual may fail to seek and adhere to treatment or decline to accept social services if such actions would cause worry and concern to the family, damage the family's reputation, or threaten the family structure.467
The burdens of complex medication regimens and multiple medical appointments tend to dominate the daily schedules for HIV-infected parents and their HIV-infected youth. Episodes of wellness and illness in both parent and child are often the norm with families affected by HIV, and these cycles contribute to ongoing stress. If families are also coping with survival or social issues such as poverty, homelessness, or discrimination, HIV may not be in the forefront for them. Indeed, these issues may interfere with their HIV care. Recognizing the importance of cultural and social issues as well as the complexity of negotiating chronic illness and formulating a plan to address them is a critical factor for facilitating the transition process.
- Yep GA. Overcoming barriers in HIV/ AIDS education for Asian Americans: Toward more effective cultural communication. In: Confronting the AIDS epidemic: Cross-cultural perspectives on HIV/AIDS education. Umeh DC, editor. (pp. 219-230). Trenton, NJ: Africa World Press. 1997.
- Chodon T. The Role of Culture in HIV/AIDS Health Care--A Practical Guide for Providers Serving Asian and Pacific Islander Americans. New York: Asian and Pacific Islander Coalition on HIV/AIDS; 2001.
- Cohen MS. Families coping with childhood chronic illness: A research review. Families, Systems & Health. 1999:17(2):149-164.
- Yu D. Clinician's Guide to Working with Asians and Pacific Islanders. API Wellness Center. 1999.
- Yoshioka MR, Chin J, Manzon JA. Asians & Pacific Islanders living with HIV/AIDS in New York City: in search of cultural competence. Int Conf AIDS. 1996 Jul 7-12; 11: 207 (abstract no. Mo.D.1908). Asian & Pacific Islander Coalition on HIV/AIDS, (APICHA), New York, NY.