EXPLORING THE FAMILY

NETWORKS OF HIV+ WOMEN

IN DRUG RECOVERY:

RESEARCH CHALLENGES AND

OPPORTUNITIES

This research was made possible by the following National Institute on Drug Abuse grants: R01 DA15004

(Daniel Feaster, PhD) and R01 DA16543 (Victoria Mitrani, PhD). Funding was also received from the NIH

Office of Research on Women's Health.

Victoria B. Mitrani, PhD, Nomi S. Weiss-Laxer, MPH, MA,

Christina E. Ow, BA, and Daniel J. Feaster, PhD

Presentation overview

Background

PLWHA & family

Challenges of family research with PLWHA

Study methods

Parent Studies

Present Study

Results of present study

Discussion

HIV/AIDS and family: Reciprocal

effects

Multigenerational disease

Disruptive of relationships (e.g. parenting,

partner)

Family can both negatively and positively affect:

Medication adherence

Psychosocial functioning

Health care utilization

Sexual risk taking

The Significance of family research

with PLWHA

For understanding the effects of family on, Adherence to health care treatment

Risk behaviors

Co-occurring conditions

For gaining an understanding of the family processes that affect outcomes,

Disclosure

Family support and cohesion

Decision-making and conflict resolution

For developing and testing family-based interventions to improve outcomes for PLWHA and their families

Family research methodology

challenges

Family research on adults with HIV/AIDS is

relatively scarce due to serious challenges:

1. No standard approach for defining the family

2. Difficulty of engaging family members

3. Difficulty of tracking changes in family composition

over time

Challenge 1: Defining the family

PLWHA disproportionately live in nontraditional households

Defined by biological or legal ties, financial or emotional support, strength and duration

―Networks of mutual commitment‖

(Pequegnat, et al. 2001)

Racial and ethnic minority families

Extended family and kinship structures include multiple heads of household, multi-generational households, ―fictive kin,‖ informal adoptions

A Flexible & Operationalizable definition is needed

Challenge 2: Engaging the family

Family members may not feel as affected or

compelled by women’s experiences (unlike with

child research)

Stigma, secrecy and privacy

Non-random ―missingness‖ determinants:

Quality of relationship with woman

Motivation to participate

HIV or SA disclosure

Challenge 3: Tracking the family

Researchers need to know what parts of the family network they are and are not reaching

Particularly relevant in research with populations in transitional moments

In longitudinal research it is important to track entries/exits

In intervention research we need to account for structural changes in understanding outcomes

Fluidity is common due to cut-offs, death, loss of custody, incarceration, new relationships, re-establishing ties, etc.

Study aims

Illustrate how we managed the challenges &

what we found

How we defined and identified the family

Describing the family networks and households

Patterns related to enrollment of family members

Tracking changes in partner relationships, child

custody and housing arrangements overtime

Methods: Secondary analysis

Parent studies: Two companion NIDA R01’s

―SET-A‖—Adherence in HIV+ Women Recovering from Substance Abuse (DA15004 PI-Feaster)-testing the efficacy of a family-based intervention - SET

―SETA FAM‖—Family Therapy Mechanisms in HIV+ Women in Drug Recovery (DA16543 PI-Mitrani) – examining family processes

Parent study aims

To investigate the efficacy and family

mechanisms of SET for HIV+ women in recovery

Parent study design & status

Women randomized to:

SET or HIV Health Group (TAU)

Assessments (woman & family) every 4 months for 1 year

Outcome variables:

Drug use (self-report and urine drug screen)

Medication adherence and HIV indicators

Safe sex practices

Psychological distress (woman and family)

Family functioning measured using self-report and observational ratings

Analyses are ongoing

Inclusion criteria for women

English or Spanish speaking

HIV+ and meets criteria for ART

≥18 years

Meets DSM-IV for reqs for abuse or dependence on an illegal substance in past 2 years

≤2 years or less since exit from drug treatment

Willing to disclose HIV status to at least one health care professional

Willing to have an eligible family member participate

Excluded:

-Didn’t meet inclusion

criteria (n=29)

-Refused (n=1)

Participant flow: Women

SETA (treatment)

N=59

Randomized

N=126Health group

N=67

Eligible women

N=144

Pass initial screen

N=174

Missed window period

for family enrollment

(n=18)

Women’s demographics (N=174)

Age (M=43.3, SD=7.3)

Race: 81% African American,10% Hispanic, 7%

White, and 1% Other

Mean income: $7,413

48% less than high school education

86% unemployed

75% receive public assistance

Women’s baseline characteristics

HIV characteristics

T-cell count: M=481.3 , SD=305.4

Log HIV viral load: M=2.9, SD=1.3

Years since HIV Dx: M=9.8, SD=5.6

Substance abuse characteristics

Dependence Dx: 93.8% cocaine, 69.4% alcohol, 40.3% cannabis, 20.8% opioid, 16.7% sedative

Abuse Dx: 4.2% cannabis, 10.4% alcohol, 8.3% sedative, 4.2% cocaine, and 4.2% opioid

Most (78%) were diagnosed as dependent on ≥1substance

Mangaging challenge 1: Defining the

family

Used a flexible definition to capture the richness

and variety of family constellations in inner-city

HIV+ women

Tractible definition to allow for standardization

Focused on family relationships that would

potentially influence, and be influenced by, the

woman’s condition

Defining the family

Inclusion criteria for family members:

Must meet ≥1 of the following:

Live in the woman’s household

Her children (>5 yrs) with at least monthly contact

Has a role in helping to raise her children

Is her spouse or partner

Is a major source of support to the woman

Individuals are excluded if they:

Live in the home strictly as boarders

The woman does not want them in the study

Family Identification Form (FIF)

Administered at baseline to identify family

members eligible for the study

Administered prior to each family assessment to

track changes in family and household

composition

Additional uses:

To capture of the richness and variety of family

constellations of our sample

To represent the entire family network, including

those who did not eventually enroll in the study

FIF (cont’)

FIF asks the woman to identify:

All the people in her home

Her children (age, contact, legal custody, co-parents)

Current spouse/partner (time together, involvement

in family activities)

Anyone else considered a major source of support

Whether each of those identified knows her HIV and

recovery status

Results: Family networks

Family network members

M=4.5 (SD=2.7, range=1-15)

Household size (incl. woman)

M=2.8 (SD=2.0, range=1-12)

Almost 40% of the network lived with woman

54% had current partner and 10% were married

70% of network comprised of adults

Results: Family network members

Results: Household configurations

Results: Parenting arrangements

Most of the women (81%) were mothers

48% had minor children

60% had adult children (≥18)

Women with minor children were younger than the overall sample(M=39.5 vs. M=43.3)

N=35 women had custody of ≥1 minor

31% had no one helping them raise their child/ren

45% had 1 other person helping

23% had 2 other people helping

N=20 women (n=42 children) were helping to raise other people’schildren—mostly their grandchildren

Results: Minors (N=143 children)

Results: Family’s knowledge of HIV

and SA

Challenge 2: Engaging the family

Percentage of eligible family members enrolled

Total

N=581

Minor

child

N=94

Adult

child

N=161

Adults

N=444

1st

degree

N=331

2nd

degree

N=61

Partners

N=80

Friends

N=47

Other

N=62

Challenge 3: Tracking the family

FIF Follow-up questions administered prior to each

family assessment:

Changes in household, partners, new members

New members were invited to join study the study

Members who left the family were retained in

study (could come to a separate session)

Results: Family changes

(N=83 with baseline & 12-month data)

20.5% live alone

54% had partner

31 children in house

24.1% live alone

Of women with

partner at baseline,

84% stayed together

29 children in house

1 gained custody of 2

children

Baseline 12 month follow-up

Results: Household changes

(N=70 with data at all time points)

49% experienced some change in household

composition

27% gained household member

30% lost household member

9% moved out of the household in which they’d lived

N=74 instances of household change described as…

42% positive

10% negative

49% neutral

Discussion: Household composition

Mixture of typical and atypical configurations

Sizable number of women raising children alone (i.e. doubly burdened with managing their own medical conditions and caregiving)

Some household configurations illustrate structures that are likely to be mutually supportive (e.g. sisters raising their respective children together)

Study of both HIV infected and uninfected African American mothers found ~50% were sole caregivers, ~25% lived with a male partner and ~25% other adults

―Other adults‖ were mostly female, frequently including the child’s grandmother and/or child’s aunt (Dorsey et al., 1999)

Discussion: Support in unusual

arrangements

Example #1: Woman taken in by her ex-husband and his new wife and family who were helping the woman to move forward with her drug recovery.

Example #2: Woman, her physically impaired ex-husband, her young boyfriend, and her daughter and the daughter’s husband and 6 year old daughter. In this case, the index woman was helping to care for her ex-husband who in turn played the role of advisor to the younger members of the family.

The litmus test of family function not merely based on what the family composition looks like, rather on the clarity of the boundaries within a given family and how well these relationships function within that family structure (Boyd-Franklin, 2003).

Discussion: Children and parenting

Parenting disruptions are associated with HIV and substance abuse

~50% of minors did not live with index woman and were not in her custody

Of children not in their mother’s custody, ~33% were in the state’s custody

Metasynthesis of qualitative studies focusing on women who are dually diagnosed with HIV and substance abuse (Barroso & Sandelowski, 2004)

1. Motherhood brings an intensified stigma to the dual diagnosis

2. Regaining custody and bettering relationships with children are strong motivators for drug treatment

3. Women express intense feelings of guilt and fear of rejection when faced with reuniting with their children and reestablishing family units

In light of these challenges, our study found that the family was an important source of parental support both for children out of their mother’s custody and those being raised by their mothers.

However, while many women were receiving assistance from family members in raising their children, others were raising their children on their own, and still others helping to raise the children of others.

Methodological challenges revisited

Challenges in conducting family-based research with HIV+ women:

1. Defining and identifying the family

2. Engaging family members into research and knowing what parts of the family were missed

3. Tracking changes in family composition over time

The absence of a standard approach for defining the family and the complexities of measuring family functioning when only part of the family is available and when the composition of the family is itself a moving target seriously impedes behavioral research on family and HIV.

Similar concerns were brought up by authors from the NIMH Consortium on Family and HIV/AIDS (Pequegnat et al., 2001) who recognize the paucity of literature on families of PLWHA, the methodological barriers, and the need for instruments tailored for this population.

Challenge 1: Defining the family

Due to the richness and variety of family constellations among HIV+ women, a definition is needed that is simultaneously standardized and flexible.

We advocate an approach to defining the family of HIV+ women for purposes of behavioral research that focuses on those people who are most likely to influence and be influenced by the HIV+ person’s health and psychosocial functioning, i.e., those who are proximal to the index patient based on roles rather than on biological relationships.

Challenge 2: Engaging families

This study engaged 55% of network; ~41% of partners

Incomplete picture of the family

―Missingness‖ of family members not random (E.g. family members with strained relationships with the index patient, or who shun assessment due to stigma are apt to be more difficult to engage.)

Minimum requirement is knowing who is missing from the family assessment.

Provides clues for future studies regarding classes of family members who require special attention with regard to outreach

Analysis and generalization implications

In this sample, secretiveness does not seem to have been a barrier to family engagement in research (i.e. no differences in enrollment by HIV or SA disclosure)

Challenge 3: Tracking family changes

Family fluidity, especially entries and exits from the family or the home, is a particularly vexing problem for getting an accurate picture of the family over time

In the current sample we found that nearly half of the women had experienced a change in household composition during the 12 months of the study, a factor that we will have to take into consideration when examining longitudinal effects on relational factors and systemic family-level effects.

Child custody, living arrangements, and romantic partners, on the other hand, were relatively stable over the course of the study. Thus we will be able to examine longitudinal changes in mother-child relationships without too much concern that they are over-shadowed by changes in daily physical proximity.

Study limitations

Representativeness: Sample only includes women who at initial screening could identify at least one family member who would be available to enroll in the family study

Networks not an exhaustive census of the women’s family members, only the ones she is actively involved with. (Therefore the large proportion of people who know the woman’s HIV status and that she is in substance abuse recovery does not represent the proportion of her relatives who know her status.)

Descriptions of family fluidity limited due to low complete follow-up data: available for approximately half of our sample, 57.6% for partners and children and 48.6% for household composition changes

Future research

HIV+ women and their families face many difficulties and also have access to many strengths, which can be the potential focus of interventions to improve family functioning and supportive resources.

Areas for further research:

Studies to support and strengthen parental subsystems for children affected by HIV/AIDS

Refinement of methods for identifying and tracking the family

Studies to understand the barriers and facilitators of family member enrollment and retention in research

The challenge for researchers is that the complexity and elasticity of families affected by HIV/AIDS make them a rich focal point for new knowledge and interventions but also renders them difficult to study. Ongoing dialogue and approaches for confronting this dialectic are needed to advance the field of family research of PLWHA.

References

Barroso, J., & Sandelowski, M. (2004). Substance abuse in HIV-positive women. Journal of the Association of Nurses in AIDS Care, 15(5), 48-59.

Bergman, M. (2007). Single-parent households showed little variation since 1994, Census Bureau reports. U.S. Department of Commerce, Washington, D.C.: U.S. Census Bureau News.

Boyd-Franklin, N. (2003). Black families in therapy: Understanding the African American experience (2nd ed.). New York: Guilford Press.

Dorsey, S., Chance, M. W., Forehand, R., Morse, E., & Morse, P. (1999). Children whose mothers are HIV infected; who resides in the home and is there a relationship to child psychosocial adjustment? Journal of Family Psychology, 13(1), 103-117.

Knowlton, A. R., Hua, W., & Latkin, C. (2005). Social support networks and medical service use among HIV-positive injection drug users: Implications to intervention. AIDS Care, 17(4), 479-492.

Pequegnat, W., Bauman, L. J., Bray, J. H., DiClemente, R., DiIorio, C., Hoppe, S. K., Jemmott, L.S., Krauss, B., Miles, M., Paikoff, R., Rapkin, B., Rotheram-Borus, M.J., & Szapocznik, J. (2001). Measurement of the role of families in prevention and adaptation to HIV/AIDS. AIDS and Behavior, 5(1), 1-19.