Abstract
Background
Care and support play a critical role in assisting people who are HIV‐positive to understand the need for prevention and to enable them to protect others. As the HIV/AIDS pandemic progresses and HIV‐seropositive individuals contend with devastating illness, it seemed timely to inquire if they receive support from family members. It also was important to develop a normative idea of how much family support exists and from whom it emanates.
Objectives
To assess the effect of family support on morbidity, mortality, quality of life, and economics in families with at least one HIV‐infected member, in developing countries.
Search methods
The following databases were searched:
The Cochrane Central Register for Controlled Trials (CENTRAL), the Cochrane Database of Systematic Reviews, MEDLINE, AIDSLINE, CINAHL, Dissertation Abstracts International (DAI), EMBASE, BIOSIS, SCISEARCH, the Cochrane HIV/AIDS group specialized register, INDMED, Proquest, and various South Asian abstracting databases, will be included in the database list. The publication sites of the World Health Organization, the US Centers for Disease Control and Prevention, and other international research and non‐governmental organizations. An extensive search strategy string was developed in consultation with the trial search coordinator of the HIV/AIDS Review Group. Numerous relevant keywords were included in the string to get an exhaustive electronic literature search. The search was not restricted by language. Articles from other languages were translated into English with the help of experts. A hand search was carried out in many journals and abstracts of the conference proceedings of national and international conferences related to AIDS (e.g. the International Conference on HIV/AIDS and STI in Africa [ICASA]). Efforts also were made to contact experts to identify unpublished research and trials still underway.
Selection criteria
Intervention studies. Randomized control trials (RCTs) and quasi‐RCTs involving HIV‐infected individuals with family support in developing countries.
Data collection and analysis
We independently screened the results of the search to select potentially relevant studies and to retrieve the full articles. We independently applied the inclusion criteria to the potentially relevant studies. No studies were identified that fulfilled the selection criteria.
Main results
We were unable to find any trials of family support in reducing the morbidity and mortality in HIV‐infected persons in developing countries.
Authors' conclusions
There is insufficient evidence to bring out the effect of family support in reducing the morbidity and mortality of HIV‐infected persons in developing countries. This review has highlighted the dearth of high‐quality quantitative research about family support. There is a clear need for rigorous studies of the clinical effects of family support on people with HIV in developing countries.
Plain language summary
Family support in reducing morbidity and mortality in HIV‐infected persons
There is a lack of evidence from randomized controlled trials to show the impact of family support as an intervention in treating people living with HIV/AIDS (PLHA) in developing countries. Family support affects PLHA on many levels and includes financial assistance, support in the disclosure process, routine daily activities, and medical assistance or psychological support. Studies from developed countries as well as relevant non‐intervention studies suggest that family support makes multiple levels of positive impact on people living with HIV/AIDS. Perceived family support for HIV‐positive women predicts an increase in mental health across several areas and includes reducing anxiety, stress, depressive symptoms, and loneliness over a period of time. Our main conclusion from this review, however, is that more rigorous studies are required in developing countries before substantive conclusions can be drawn about the effects of family support in reducing morbidity and mortality in HIV‐infected persons.
Background
The global pandemic of HIV/AIDS has triggered responses of compassion, solidarity, and support. According to estimates from the UNAIDS/WHO AIDS Epidemic Update, 30.8 million adults and 2.5 million children were living with HIV at the end of 2006 (UNAIDS/WHO 2007). Other responses, however, have associated the disease with stigma, ostracism, repression, and discrimination as many HIV‐infected individuals are rejected by their families, loved ones, and communities. Worldwide, ignorance, fear and denial have denied PLHA access to treatment, services, and support and has made HIV prevention more difficult. Fear, stigma, and discrimination have undermined the ability of societies to protect themselves and provide support and reassurance to those who are infected. Care and support, both medical and emotional, can help HIV/AIDS patients lead fulfilling lives.
The United Nations General Assembly on 20th September 1993 proclaimed that 15 May of every year shall be observed as the International Day of Families. For the year 2005, the theme of the observance was “HIV/AIDS and Family Well Being.” HIV/AIDS is a disease that affects families in a profound and tragic way. When a family member, particularly a parent becomes sick and weakened, or dies, everyone in the family suffers. HIV/AIDS has greatly and disproportionately affected family structure and functions, increasing the vulnerability of families living in poverty and in developing countries, which have the vast majority of people infected (UNAIDS 2004). The strength of families and family networks is instrumental in determining how well individuals and communities are able to cope with the disease and its consequences. When facing societal discrimination and other hardships related to HIV/AIDS, a strong and supportive family is one of the first lines of defense (Li Li 2006).
Studies from developed countries as well as relevant non‐intervention studies suggest that family and social support can be very effective in helping PLHA to cope with HIV/AIDS. Families are small or large, composed of members who have obligations to provide a broad range of emotional, social, psychological, or material support. Families have structure, functions, assigned roles, modes of sharing resources, group culture, and shared history. Structurally, families can be categorized as nuclear, extended, joint, or created. Families provide or share food, clothing, shelter, security, and social support and can provide support and care for people living with HIV/AIDS (World Bank 1997; Warwick 1998; Aggleton 1999).
A recent study in a developed country found that HIV‐positive men were less likely to be depressed if they received support from their families (Serovich 2005). In another such study, HIV‐positive men who received social support from their families were less likely to engage in risky sexual behaviors than were men who did not (Kimberly 1999). Social support is an important factor in helping people to adapt psychologically to living with HIV infection (Green 1993). This type of support promotes a sense of emotional wellbeing (Kalichman 2003). Although some people with HIV/AIDS have strong family support systems, many do not (Martin 1998). Another study on the effect of family support on the psychological well‐being of heterosexual couples with at least one HIV seropositive partner, showed an association between a general lack of family support with psychological distress (Kennedy 1995).
The situation can be worse in rural areas. Compared with their urban counterparts, rural people with HIV report a significantly lower satisfaction with life, lower perception of social support from family members and friends, reduced access to medical and mental health care, greater loneliness, more community stigma, heightened personal fear that their HIV sero‐status would be learned by others, and more maladaptive coping strategies (Heckman 1998).
In Thailand as well as in many other countries, families affected by HIV/AIDS provide psychological and economic support to their infected family members (Manopaiboon 1998). A study conducted in Mexico found that a majority of the family members displayed negative responses to a family member’s HIV diagnosis. In this case HIV became a catalyst of pre‐existing family conflicts. Studies have shown that disclosure of HIV‐positive sero‐status can result in greater social support (HDN 2005), which in turn has positive effects on psychological well being (Istrow 1989; Zich 1987). Social support, especially family support, was significantly related to disclosure of HIV status in South Africa (Sethosa 2005). In a cohort study in the southern United States, greater family support at baseline was found to be predictive of positive changes in physical and social functioning among PLHA who were on highly active antiretroviral therapy (HAART) (Jia 2005). Those PLHA consistently taking HAART experienced better clinical benefit if they perceived available social and family support (Burgoyne 2005). Another study has shown that family support is predictive of reduced risk behaviors among HIV‐positive gay men (Kimberly 1999).
In many cases, the increased psychological burden on family members pushed the family to stay closer together and provided a wide dimension of support to the PLHA. Family support in this context starts with the disclosure process and helping PLHA to cope with HIV/AIDS. The families also provided financial assistance, support in daily routines, medical assistance, and psychological support. (Li Li 2006).
This review examines the role of family support in reducing the morbidity and mortality in HIV‐infected persons in developing countries.
Description of the condition
Types of studies
Intervention studies: RCTs and quasi‐RCTs were included in this review.
Types of participants
Family units of HIV‐infected persons who have and do not have symptoms, in developing countries.
Description of the intervention
Family support, provided by family members to the HIV‐infected person at home or outside the home compared to HIV‐infected persons receiving support from institutions such as hospitals or non‐governmental organizations (NGOs), but not from family members.
How the intervention might work
Family support could have a positive effect on multiple levels on people living with HIV/AIDS.
Why it is important to do this review
It was important to do this review beacuse there is a lack of evidence from randomized controlled trials to show the impact of family support as an intervention in treating people living with HIV/AIDS in developing countries.
Objectives
To assess the effect of family support on morbidity, mortality, quality of life, and economics in people with HIV in developing countries.
Methods
Criteria for considering studies for this review
Types of studies
Intervention studies: RCTs and quasi‐RCTs
Types of participants
Family units of HIV‐infected persons who have and do not have symptoms, in developing countries.
Types of interventions
Family support, provided by family members to the HIV‐infected person at home or outside the home compared to HIV‐infected persons receiving support from institutions such as hospitals or NGOs, but not from family members.
Types of outcome measures
Primary outcomes
1. Morbidity, such as opportunistic infections; progression to AIDS; transmission to family members; and psychological depression of the person with HIV or family members.
2. Death and time to death of the HIV‐infected person.
Secondary outcomes
3. Quality of life of the infected person, and the family as a whole, with respect to feeling less stigmatized, developing self‐esteem, handling discrimination in the workplace, job loss and employment difficulties, relationships with friends and family members, and adherence to treatment.
4. Economic implications for the family in accessing health services.
Search methods for identification of studies
See: Cochrane HIV/AIDS Group methods used in reviews.
See Figure 1 for examples of search strategies.
1.
Examples of search strategies used in PubMed, CENTRAL and EMBASE
Electronic searches
A comprehensive list of electronic databases was made in consultation with the HIV/AIDS Review Group Coordinator, the trial search coordinator and experts in HIV/AIDS research and service projects working in developing countries. Opinions from policy makers and healthcare administrators were also sought to locate relevant databases. This list served as the key document for extraction of data from electronic databases The Cochrane Central Register for Controlled Trials (CENTRAL), the Cochrane Database of Systematic Reviews, MEDLINE, AIDSLINE, CINAHL, Dissertation Abstract International (DAI), EMBASE, BIOSIS, SCISEARCH, the Cochrane HIV/AIDS group specialized register, INDMED, Proquest, and various South Asian abstracting databases, were included in the database list with the help of the search coordinator at the HIV/AIDS Cochrane Group. The publication sites of the World Health Organization, the US Centers for Disease Control and Prevention, and other international research and non‐governmental organizations, were also included in the database list. An extensive search strategy string was developed in consultation with the trial search coordinator of the HIV/AIDS Review Group. All possible keywords were included in the string to get an exhaustive electronic literature search. The searches were restricted to journals published in English. Articles from other languages were translated into English with the help of experts. No data extraction was done because none of the studies met the inclusion criteria.
Searching other resources
a) Hand searching: Because many of the publications from developing countries may not have appeared in electronic databases, a hand search was performed of journals and abstracts of the conference proceedings of national and international conferences related to AIDS (e.g. the International Conference on HIV/AIDS and STI in Africa [CASA]). Efforts were also made to contact experts to identify unpublished research and trials still underway.
b) Personal communication: Key personnel and organizations working in HIV/AIDS intervention programs in developing countries were contacted for published and unpublished references and data.
c) Cross‐references: The quoted references of studies identified by the procedures above were further scrutinized to locate more studies. The search strategy were iterative in that references of the included studies were searched for additional references.
Data collection and analysis
Selection of studies
The abstracts of all identified studies underwent initial screening in an inclusive manner, based on the criteria for studies, and were short listed. The full articles of short‐listed studies were obtained and scrutinized independently by the two authors (PM/AK) for inclusion. Scrutiny for inclusion was based on type of study, type of participants, type of interventions, and outcome measures. A standard was developed and used for documenting the scrutiny process and each of the authors (PM/AK) independently documented the status of inclusion or exclusion of the study and the reasons for doing so. Disagreement about the inclusion of the study was resolved by discussion among the two authors. The agreed‐upon studies were included in the review. For excluded studies, a summary statement was made about the reasons for exclusion.
Study quality assessment: Because no studies were included in this review, no quality assessment was done.
Data analysis: No analysis was done because no study was included in this review.
Data extraction and management
Data extraction: No studies met the inclusion criteria; thus, there was no data extracted.
Assessment of risk of bias in included studies
No included studies
Measures of treatment effect
No included studies
Unit of analysis issues
No included studies
Dealing with missing data
No included studies
Assessment of heterogeneity
No included studies
Assessment of reporting biases
No included studies
Data synthesis
No included studies
Subgroup analysis and investigation of heterogeneity
No included studies
Sensitivity analysis
No included studies
Results
Description of studies
Results of the search
The initial search generated 31,226 citations. A total of 1983 abstracts were considered to be potentially relevant and were independently scrutinized by two reviewers (PM/AK) to assess their eligibility. Fifty‐two papers were considered relevant and were retrieved for further assessment. Six appeared to be relevant and underwent review of the full articles. A search of International AIDS Conference abstracts identified 16 titles. A scrutiny of the abstracts of these studies by the two reviewers separately found that none of these studies were eligible for inclusion in this review.
Hand search was done of the conference abstracts of International Conference in AIDS in South Africa up to 2006. Seven of the 10 authors of the International AIDS Conference abstracts were contacted for the full article through e‐mail contacts. None of these studies satisfied the inclusion criteria; either the study was in a developed country or the study design differed from the inclusion criteria.
The journals hand searched were Journal of Acquired Immune Deficiency Syndrome (JAIDS), AIDS Care, AIDS Education And Prevention, AIDS And Behavior, American Journal of Public Health, Indian Journal of Medical Research, Indian Journal of Community Medicine, Indian Journal of Public Health, and many more. Hand search of the cross‐references from the selected articles of the initial search was done. However, none of these studies were eligible for inclusion in this review.
Included studies
No included studies
Excluded studies
Details given in the table.
Risk of bias in included studies
No included studies
Allocation
No included studies
Blinding
No included studies
Incomplete outcome data
No included studies
Selective reporting
No included studies
Other potential sources of bias
No included studies
Effects of interventions
No included studies
Discussion
Several studies not meeting this review's inclusion criteria may still contribute some insights. In a qualitative study from China, support provided by families had multiple levels of positive impact on participants. As a result of family support, PLHA made important decisions, such as being tested for HIV and taking medication regularly. The positive impact on PLHA also benefited the family relationship; PLHA regained hopes for their future and valued their families more and had a positive attitude towards life in general (Li Li 2006). With family support, many of the participants expressed positive attitudes and made positive changes in their lives. Family members persuaded several participants to be tested for HIV. One female participant explained how initially she did not want to take the HIV test and how her father convinced her to do so. (Li Li 2006). This study also found that participants were more likely to seek support from family members than from friends. Family members took care of many of the PLHA when they were sick; this made an enormous difference both psychologically and physically on PLHA. The family support helped PLHA to develop a sense of responsibility and therefore changed their thoughts about HIV and their future. Studies have shown that family plays an essential role in the life of PLHA, moreso than a social support network (Bor 2004).
A study done in the United States stressed the relation between HIV awareness and family support. Family members' awareness about being HIV‐positive and the support they extended were well related. Absence of support reflected lack of awareness within the same family; mothers were more frequently aware and supportive than fathers (P=0.0001 and P=0.0001, respectively). Sisters were reported as more often aware and supportive than brothers (P=0.02 and P = 0.01, respectively) (Foley 1994). HIV‐positive individuals who had more family available to provide social support or who utilized social support from their family tended to behave in less risky ways. More specifically, having family members with whom to talk about personal and private feelings was related to the intention to limit sexual partners (Kimberly 1999).
The limited information from the qualitative study of Li Li 2006 highlights the gap in the existing evidence in developing countries. At this point, the effectiveness of family support in reducing morbidity and mortality among HIV‐infected people in developing countries could not be established. The lack of evidence from this topic could be related to publication bias, but it could also reflect a lack of investigation of family support as a measure for reduction of morbidity and mortality among HIV‐infected people in developing countries.
Summary of main results
This review has no analyses.
Overall completeness and applicability of evidence
Lack of evidence, as no studies were found to be suitable for inclusion in this review.
Quality of the evidence
No included studies
Potential biases in the review process
Review focused on studies done in developing countries.
Agreements and disagreements with other studies or reviews
No included studies
Authors' conclusions
Implications for practice.
At this time, it is impossible to draw reliable conclusions from the available data to support the use of family support in reducing morbidity and mortality among HIV‐infected persons in developing countries. Because most HIV‐infected patients are currently receiving organizational support or home‐based care, the clinical practice decisions must be based on physicians' judgments and patients' value given this lack of data in the literature.
Implications for research.
This review has shown that more research is needed, but it must be of sufficient quality to be able to draw valid conclusions about the effects of family support.
It would be possible to implement an RCT, but allocation of the HIV‐infected person to control or experimental groups would require the cooperation of the counseling centers (VCTC/ PCTC).
Measuring interventions such as family support can be difficult, and the lack of a consistent definition has made it more so. The definition of family support, as in this review, is the support provided by family members to the HIV‐infected person, at home or outside the home.
Acknowledgements
The authors wish to thank Ms.Tara Horvath, Assistant Coordinator of the HIV/AIDS Group, for her timely support and guidance and permission to use the research tools of the Cochrane HIV/AIDS Group in San Francisco during the completion of this review. We would also like to express our thanks to Dr. Taryn Young, mentor of this review, from the HIV/AIDS Groups mentoring programme, for her input during the development of the protocol.
This review received feedback from Dr. Sreekumaran Nair, coordinator of the Manipal centre of the South Asian Cochrane Network. We would also like to put in record the HIV/AIDS Group's Mentoring Programme, for the valuable opportunity to gain knowledge and support while conducting a Cochrane systematic review.
Characteristics of studies
Characteristics of excluded studies [ordered by study ID]
| Study | Reason for exclusion |
|---|---|
| du Plessis 1997 | Not randomized or quasi‐randomized study |
| Foley 1994 | Study setting is developed country |
| Kimberly 1999 | Study setting is developed country |
| Li Li 2006 | Qualitative study design |
| MacNeil 1999 | Not randomized or quasi‐randomized study |
| Serovich 2001 | Study setting is developed country |
Differences between protocol and review
The protocol described the plan of carrying out this review; however, on performing the review, the authors found lack of evidence for family support as an intervention in reducing morbidity and mortality among HIV‐infected people in developing countries.
Contributions of authors
PM registered the title for the review.
Both authors contributed equally in the development of the objectives of the review and in writing the protocol, in the literature search, in assessing studies for inclusion, and in writing the review.
Sources of support
Internal sources
-
Manipal University, Manipal, India.
Resources for conduct of this review
External sources
No sources of support supplied
Declarations of interest
None known
New
References
References to studies excluded from this review
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