Family model of care
The family model of care is based on the linkage between index patients and their family members at risk. A "family", in this context, is defined as two or more individuals who identify themselves as partners or family members, and "family members at risk" are defined as partners and/or children under 15 years of age of index patients. The family model of care is designed to identify, engage and care for all HIV-positive family members, prevent new infections among family members at risk, and raise family support and awareness within the HIV department at a health facility (Figure ). Comprehensive family-centred services are built around this process.
Figure 1 Family model of care. This diagram illustrates the family model of care approach. It is based on the linkage between index patients and their family members at risk. Index patients are enrolled, assisted disclosure is provided, vulnerable family members (more ...)
Identifying family members at risk
Foremost to the family-centred approach is identification of individuals at risk of HIV. Recognizing that each new patient is part of a family at risk for HIV, a system was developed to facilitate HIV testing among family members. On-site HIV education led by trained peer educators, who share their personal stories, is conducted to help patients gain a better understanding of the implications of HIV and how to live positively, including the importance of disclosure and family testing, as well discussing their personal barriers to disclosure.
During each clinical encounter, using a tool called the family information table (FIT), lay healthcare workers (HCWs) and providers guide patients through the steps of identifying family members at risk, assisted disclosure, bringing in family members for testing, enrolling those who are HIV positive into care, working with those who are HIV negative and HIV positive to prevent transmission, and building family support, including the encouragement of partner involvement. During subsequent clinic visits, providers update the FIT to continue to develop strategies with patients to overcome barriers to each of these steps.
Often the first barrier to family member testing is disclosure of HIV status due to stigma, denial and fear of rejection. To overcome the barrier of patients disclosing their HIV status to family members and to work towards achieving positive reactions, trained lay HCWs or nurses counsel patients through the disclosure process. Assisted disclosure begins with counselling on the risks and benefits of disclosure, followed by creating a personalized disclosure plan, including who the patients want to disclose to, in what order, and when, where and how to do it. Counsellors work to enhance patients' ability to disclose safely and to communicate with their partners about HIV. This sometimes involves role playing with the counsellor. Patients can decide to disclose on their own or in the presence of staff either at the clinic or in the patient's home or they can request a staff member to disclose on their behalf. If gender-based violence is suspected as a potential consequence, psychosocial counselling is provided, including discussion on alternative plans to disclosure.
Testing family members at risk
Family members who are brought to the facility for testing are seen by nurses in a private setting. The nurses follow national guidelines for HIV counselling and testing, using the provider-initiated testing and counselling (PITC) approach. PITC involves providers taking the initiative to test patients for HIV at their point of care within a health facility. Family member testing is essentially an extension of PITC to include partners and family members of patients. Nurses review the purpose of the clinic visit, clarify their role as a counsellor, and determine previous testing status. They also work with the patients to determine if couples, family or individual testing is appropriate. Patient confidentiality is assured, and the nurses work to establish patient understanding of HIV. Consent follows the opt-out approach.
The HIV testing algorithm involves a rapid HIV antibody test. A second rapid test from a different manufacturer is performed if the first result is positive, and a third confirmatory test is conducted when the first two results are discordant. Infants younger than 18 months undergo an early infant diagnosis algorithm with DNA polymerase chain reaction (PCR) testing at six weeks of age. Those negative at six weeks of age undergo serial antibody testing at nine and 18 months. Positive antibody tests for any infants younger than 18 months are confirmed with DNA PCR testing. Patients with negative results are encouraged to return for repeat testing in three months' time, are counselled and referred for HIV prevention, and encouraged to be involved in their partners' HIV care. Patients with positive results receive post-test counselling and are encouraged to enrol into care. Testing outcomes are documented in the index patient's FIT.
Enrolment into clinical care and supportive services
To facilitate family care and involvement, family members identified as HIV positive are immediately offered enrolment into care in a programme designed to support the family unit. Family members are booked for joint appointments, their files are kept together, couples and family counselling is provided, and family treatment buddies and partner involvement are encouraged. Family-friendly clinical services consist of opportunistic infection prevention and treatment, including tuberculosis and sexually transmitted infections, provision of highly active antiretroviral therapy, family case management, family planning, pre-conception counselling, nutritional support, and prevention with positives interventions.
Additional services include patient support groups to provide psychosocial support, build alliances, boost adherence, offer an open and accepting forum for discussion, and foster creative ideas and activities to strengthen families, including income-generation projects. It is common for HIV-infected children to have lost one or both parents and to be living with a single parent, grandparent or other guardian [15
]. Therefore, ensuring that children have the best opportunity for quality care is a priority. Expert paediatric clinical care and counselling, a children's club, a caregiver support group, a children's breakfast programme and a waiting-area playground were instituted. Partnerships with local agencies were established for home-based care and educational support for children. Within antenatal care services, prevention of parent to child HIV transmission, integrated HIV services, early infant diagnosis for HIV-exposed children and partner testing are emphasized.
To optimize human resources and conserve valuable nurse and clinical officer time, a task-shifting approach is utilized to implement the family model of care. Lay HCWs, including peer educators and/or persons living with HIV, take on the non-clinical activities: trained lay HCWs conduct HIV education, provide disclosure support and counselling, complete the initial FIT, manage family files, and facilitate and/or support the children's, caregiver and patient support group activities. Nurses carry out family member testing and nurses and clinical officers are responsible for reviewing, updating, and guiding patients through the FIT during each clinical visit, enrolling family members into care, conducting couples and family counselling, and providing family-centred clinical services.
Family information table evaluation methods
The family model of care approach was implemented in its earliest form at Lumumba Health Centre in Kisumu when HIV services were first launched in 2005. It was enhanced and refined over the next several years. An electronic medical record system (EMR) was implemented in September 2007 for patient enrolment records; however, the FIT was not integrated in or linked to the EMR. To evaluate the family model of care, a retrospective cross-sectional study was conducted among a sample of adult patients (15 years and older) seen between September 2007 and September 2009 at Lumumba Health Centre in Kisumu, Kenya.
The FITs were reviewed to assess HIV-infected index patients and family member linkages. Using a retrospective approach, a list of active adult patients between September 2007 and September 2009 was generated from the EMR system. There were 5802 active adult patients, including 1874 males and 3928 females. Among each gender cohort of patients, 5% (n = 96 males; n = 201 females; n = 297 total) were selected as the number of index patient FIT charts to audit. This sample size was chosen as it was a feasible number of FIT charts to audit and large enough to generate meaningful findings. Statistical Product and Service Solutions (SPSS) was then used to randomly select patients.
Charts were pulled for examination; 87 male charts and 198 female charts were reviewed, and three male charts and nine female charts were missing at the time of chart abstraction. This sample was used to determine the mean number of family members at risk (partners and children 0-14 years), proportion tested, proportion HIV positive, and proportion enrolled in care. Ninety-five percent confidence intervals (CIs) for proportions were estimated assuming an exact binomial distribution and 95% CIs for means were estimated assuming a Student's T distribution. Descriptive FIT data were analyzed in SPSS.
Ethical review committee (ERC) permission was obtained locally and internationally; the protocol was reviewed for human subject concerns and approved by the Kenya Medical Research Institute ERC and University of California San Francisco Committee on Human Research.