1.6.4 Family Dynamics
HIV changes family functioning in multiple areas (Krishna et al. 2005 ) . Major adjustments in the lifestyle may be necessary if the ill family member lives at home. Siblings and spouses may have concerns, such as having their needs ignored as the family attends to the sick member. There may be anger in low-income fami-lies because everyone is expected to contribute to the household but the seroposi-tive person is unable to work because of fatigue and unpredictable health. Families report changes in the roles and responsibilities when the families’ primary support person becomes ill. Family members begin to play multiple roles, taking on increased responsibility as the illness progresses, resulting in increased role strain.
There may be developmental or role changing issues: a previously independent adult may have to be reintegrated into the family for care, an adolescent with chronically ill parents, who is struggling for emancipation may need to provide care, and a mother who is recovering from drug addiction may need to redefi ne her role as mother and daughter. As illness progresses, some family members with-draw due to physical or emotional exhaustion or over identifi cation with the patient (Carl 1986 ; Dunkel-Shetter and Wortman 1982 ; Flaskerud and Rush 1989 ; Namir et al. 1989 ) .
There are also concerns about infecting other members of the family which inhibits family dynamics. In-person interviews were conducted with 344 parents from a nationally representative probability sample of adults receiving health care for HIV in the contiguous U.S. (Schuster et al. 2005 ) . Questions were asked about parents’ fear of transmitting HIV to their children, fear of catching an illness or opportunistic infection from their children, and avoidance of four types of interac-tions (kissing on the lips, kissing on the cheeks, hugging, and sharing utensils) because of these fears. Forty-two percent of parents feared catching an infection from their children, and 36.1% of parents feared transmitting HIV to their children.
Twenty-eight percent of parents avoided at least one type of interaction with their children “a lot” because they feared transmitting HIV or catching an opportunistic infection. When parents who avoided physical interactions “a little” are included, the overall avoidance rate rises to 39.5%. Hispanic parents were more likely than African American parents and parents who were white or of other races or ethnici-ties to avoid interactions. Although many parents feared transmitting HIV to their children or catching an infection from their children, few were avoiding the most routine forms of physical affection. They were much more likely to avoid interac-tions suggestive of fear of contagion through saliva.
In a longitudinal study of the effects of having children take on responsibilities due to maternal HIV, it was found that those children who had taken on more respon-sibility for instrumental caretaking roles directly because of their mother’s illness when they were young showed better autonomy development as early- and middle-age adolescents. Therefore, “parentifi cation” of young children with a mother with HIV may not negatively affect later autonomy development.
It is interesting to note that patterns of family reliance differ according to population or site. In a study of public health services utilization in the New York City greater metropolitan area, Crystal and Kersting ( 1998 ) found that asymptom-atic persons tended to rely on social support from their families, but as the disease progressed, the ill family members developed more complications and relied more on public health services. In contrast, a study in San Francisco revealed that sero-positive gay men tend to rely fi rst on their families of choice and extended support network, but as the disease progressed, they tended to rely more on their families of origin (Hays et al. 1990 ) . These differences may be explained by proximity to family. In New York, a larger heterosexual population may have become exhausted or burdened with having to care for more than one seropositive family member. In San Francisco, on the other hand, the HIV-infected population was primarily homo-sexual men whose parents did not live in the area. As the disease progressed, the family of choice or the extended family may have become exhausted, and romantic partners may have become ill and died. The seropositive person would then seek the support of their families of origin, who often lived out of town and had not been previously been stressed with day-to-day care.
1.6.5 Maintaining Custody of Children
Data was collected from interviews of 538 parents with 1,017 children (0–17 years old) from a nationally representative sample of HIV-infected adults receiving health care in the U.S. (Schuster et al. 2005 ) . Forty-seven percent of the children were in the custody of their HIV-infected parent at both survey waves, 4% were in the par-ent’s custody at the fi rst but not second survey wave, 42% were not in custody at either survey wave, and the parent of 7% gained custody between survey waves.
Parents cited drug use (62%) and fi nancial hardship (27%) as reasons for losing custody. Children of HIV-infected fathers, older parents, parents living without other adults, parents with low CD4 counts, drug-using parents, and parents with one hospital stay were less likely to be in their parent’s custody at either survey wave.
1.6.6 Stress and Coping
AIDS places an enormous strain on family systems. Families must manage an unpre-dictable illness while handling other chronic and acute stressors, often with little or no specialized training, guidance, or support. Family stress levels depend on how well they problem solve and cope with these issues together. Several studies con-ducted prior to the advent of the newest HIV medications have provided an initial taxonomy of the stressful problems experienced by families affected by symptomatic
Table 1.1 Taxonomy of problems experienced by families living with HIV/AIDS Course of HIV/AIDS and medical regimen
Concerns about recurring acute illness episodes Diffi culty in adhering to a complex medical regimen Diffi culty in maintaining a predictable routine
Complicated task of relating to multiple health and mental health providers Lack of good medical care and counseling
Family dynamics and emotions
Isolation from other family members and friends, contributing to the deterioration of partner and family relationships
Emotions associated with illness (e.g., depression, confusion, loneliness, fear, and suicidal ideation)
Guilt about having infected others Problems of living
Anxiety about fi nancial problems
Lack of available and affordable housing and related services because of their known health status
Possible need to address problems of substance abuse and changes in lifestyle Lack of respite from providing care and inadequate or unavailable alternative child care Need to plan for bereavement and future of the survivors
Handling the stigma of a disease with moral overtones
AIDS cases (Pequegnat and Bray 1997 ) . These stressors are still relevant when the seropositive family member is unable to tolerate treatment, unresponsive to such treatment, or has other conditions that make medication adherence diffi cult (e.g., substance abuse, mental illness), and consequently continues to manifest severe physical symptomatology (see Table 1.1 ).
Given the scope and uncertainty of the challenges they face, families affected by AIDS need fl exible coping skills that can be applied to a variety of circumstances, including geographical distance; competing demands for family members’ time, energy, or other resources (Stoller and Pugliesi 1989 ) ; lack of knowledge about how to be helpful (Good et al. 1990 ; Starrett et al. 1990 ) ; and history of negative interac-tions (Shinn et al. 1984 ; Fiore et al. 1983 ) . Coping with AIDS is made more diffi cult when more than one family member in a household, or even in the close extended family, is HIV-infected, including children. Many families have already experienced signifi cant losses due to AIDS and have not had an opportunity to adequately grieve signifi cant losses due to AIDS that they have already experienced (Rotheram-Borus et al. 1997 ) .
1.6.7 Complex Medical Regimen
Families affected by AIDS face multiple health care and psychosocial problems throughout the illness trajectory. Problems include complex medical management and care giving issues, disruption of family roles and routines, and concerns about
the family’s future as illness progresses. The course of illness and the effi cacy of treatment may be unpredictable, making it impossible for families to know pre-cisely what problems they will need to cope with and when.
Family members may feel helpless and overwhelmed by the needs of their ill family member for time, energy, or money; and they may feel lacking in good care-giving skills (Szapocznik et al. 2004 ) . Family and caretakers can be instrumental in helping the patient maintain good medical treatment adherence (Lyon et al. 2003 ; Simoni et al. 2006 ) .
Of course, problems related to AIDS co-occur with other issues facing the family. Given high levels of poverty, substance abuse, unemployment, and poor health care, at any given time, AIDS-related problems may not be the most pressing problems for families (Smith et al. 2001 ) . In addition to the stressors experienced by all families, AIDS-affected families have challenges that require family solutions, such as caretaking for the ill family members, replacing the lost income, and reassigning roles fi lled by the seropositive person prior to the illness.