|Year : 2021 | Volume
| Issue : 3 | Page : 198-204
Support group participation among people living with human immunodeficiency virus in tertiary hospitals in Enugu: Benefits, perceived barriers, and factors associated with participation
Ancilla Umeobieri, Kosisochukwu Udeogu, Juvernal Ugwu, Wisdom Udoh, Chukwuebuka Ugwu, Ekenechukwu Young
College of Medicine, University of Nigeria, Ituku-Ozalla, Nigeria
|Date of Submission||02-Sep-2020|
|Date of Decision||10-Dec-2020|
|Date of Acceptance||11-Jan-2021|
|Date of Web Publication||20-Apr-2021|
Faculty of Medical Sciences, College of Medicine, University of Nigeria, Ituku-Ozalla.
Source of Support: None, Conflict of Interest: None
Background: Support groups have been advocated in the care of patients with HIV and are integrated into HIV care and treatment programs. Objectives: This study aimed to assess in patients living with HIV, their awareness of support groups, knowledge of its benefits, and perceived barriers to their participation. Materials and Methods: A cross-sectional descriptive study was conducted on 430 consenting adult patients being managed for HIV/AIDS at the University of Nigeria Teaching Hospital Ituku-Ozalla, Enugu. Patients were recruited consecutively over 4 weeks, and information on their sociodemographic data, knowledge, and membership of HIV support groups was obtained using a structured interviewer-administered questionnaire. Data were analyzed using Statistical Packages for Social Sciences (SPSS) version 23. The level of significance was < 0.05, and the confidence interval was 95%. Results: The mean age of the participants was 42.8 ± 6.58 years and 70.5% were female. A diagnosis of HIV for more than 10 years was reported in 141 participants (32.8%). While 260 (60.5%) were aware of support groups, only 41 (15.8%) belonged to a support group. While 84 (21.6%) did not participate because support group meetings were hard to find where they live, 79 (20.3%) could not attend because of their job. HIV diagnosis for more than 10 years was significantly associated with higher participation in support groups (P = 0.005). Conclusion: Participation in support groups was low in our patients and several barriers were reported, with the most common being poor accessibility to support group meetings.
Keywords: Barriers, HIV/AIDS, support groups
|How to cite this article:|
Umeobieri A, Udeogu K, Ugwu J, Udoh W, Ugwu C, Young E. Support group participation among people living with human immunodeficiency virus in tertiary hospitals in Enugu: Benefits, perceived barriers, and factors associated with participation. Int J Med Health Dev 2021;26:198-204
|How to cite this URL:|
Umeobieri A, Udeogu K, Ugwu J, Udoh W, Ugwu C, Young E. Support group participation among people living with human immunodeficiency virus in tertiary hospitals in Enugu: Benefits, perceived barriers, and factors associated with participation. Int J Med Health Dev [serial online] 2021 [cited 2021 Dec 9];26:198-204. Available from: https://www.ijmhdev.com/text.asp?2021/26/3/198/313954
| Introduction|| |
A support group is a meeting of members who provide help and companionship to one another. Support groups are comprised of people who have been through the issue at hand. In such groups, they feel more comfortable sharing their experiences and getting their feelings and concerns out in the open. With others who have experienced similar situations, people generally feel less isolated while sharing their experiences. Support groups are also called group therapy.
Group therapy involves the use of group discussion and other group activities in the treatment of psychological disorders. The practice of group therapy developed rapidly in the post-World War II period. Before World War II, only a few physicians practiced group therapy. However, the large numbers of soldiers requiring psychotherapy in the post-war period compelled psychiatrists to try to treat them in groups, and the use of group methods proved so effective that they developed rapidly in the post-war years. The practice of group therapy expanded to clinical and counseling psychologists as well as social workers. Group therapeutics tend to stress either alleviation of members’ distress by direct measures or the creation of a group atmosphere conducive to increased self-understanding and personal maturation. Some aim to raise members’ morale and combat feelings of isolation by cultivating a sense of group belongingness through slogans, rituals, testimonials, and public recognition of members’ intervention.
Peer support in HIV care is consistent with the World Health Organization (WHO) guidelines on task shifting that encourage People Living with HIV/AIDS (PLWHA) to be part of the health workforce crisis solution,and the promotion of the greater involvement of PLWHA in their care has been a longstanding policy of WHO and the United Nations Programme on HIV/AIDS (UNAIDS).
In Nigeria, the earliest support groups for PLWHA were formed in 1997. By 1998, the idea of a national network of people living with HIV to bring together all existing support groups became a reality with the establishment of the Network of People Living with HIV/AIDS (NEPWHAN).With increasing investment in HIV treatment programs, the number of support groups across Nigeria has multiplied exponentially over the past decade.
Although social services for the support of PLWHA exist, they are not directed by a clear set of directives or guidelines, resulting in the haphazard provision of care and support services for PLWHA across the country.With the rapid increase in patients’ access to ART in Nigeria, it has become vital to continuously monitor treatment adherence and identify interventions that can encourage its sustainability. Establishing intervention efficacy is needed to build more confidence in the use of peer support interventions.
Support groups for PLWHA are integrated into HIV care and treatment programs as a modality for increasing patient literacy and as an intervention to address the psychosocial needs of patients. The WHO proposes support groups as an intervention to address retention and adherence among PLWHA receiving antiretroviral therapy (ART). It has become the most common and popular way of providing social support services for PLWHA in resource-limited settings. HIV is one of the most common diseases with a high rate of litigation in our society today and has called for this form of group where like minds can come together freely to learn more about their healthcare management from a well-trained team which could include medical doctors, nurses, medical psychologists, etc. HIV as a disease that is managed rather than cured, therefore, calls for a well-organized group, where PLWHA come together to get more information about the disease without fear of any form of stigmatization.
This study aims to assess the characteristics of those who participate in the HIV support group, the level of awareness of HIV support group among people living with HIV, their knowledge of the benefits of participating in the HIV support group, the barriers/perceived barriers to use of HIV support groups, and factors associated with participation in HIV support groups.
| Materials and Methods|| |
A cross-sectional descriptive study was conducted at the University of Nigeria Teaching Hospital, Ituku-Ozalla, Enugu, Southeast Nigeria. The study population was adult HIV patients attending and receiving treatment at the HIV clinic. Ethical approval for the study was obtained from the University of Nigeria Ethics Committee, while verbal informed consent was obtained from the participants. The study lasted for 4 consecutive weeks in May 2019. All patients who reported to the HIV clinic, who gave informed consent, and were stable and in no distress were enrolled in the study. The study instrument was an interviewer-administered questionnaire. Information was sought on their sociodemographic data, knowledge of HIV, and belonging to support groups. The data were analyzed using IBM Statistical Packages for Social Sciences (SPSS) version 23 Inc., and tests of significance were conducted using χ2. The level of significance was 0.05, and the confidence interval was 95%.
| Results|| |
A total of 430 participants were studied, the majority (54.4%) were between the ages 31 and 50, and their mean age was 42.8 ± 6.58 SD, with a female preponderance (70.5%). Most (64.2%) were married, and most (37%) had secondary education followed by primary education (32.3%). More than half of the participants were traders (36.3%), self-employed (29.5%), and civil servants (18.8%). Further details are outlined in [Table 1].
Most of the respondents were diagnosed with HIV more than 10 years ago, 141 (32.8%). More than half of the respondents were aware of support groups, 260 (60.5%), and only 41 (15.8%) belonged to a support group [Table 2].
On the impact of support group to the respondents, most benefited from the health education given during group meetings, 40 (97.6%), followed by 39 (95.1%) who felt a sense of belonging again in the society and who could then discuss their experiences and needs in a supportive and conducive environment [Table 3].
|Table 3: Impact of support group among those who participate in support groups|
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Some respondents, 84(21.6%), did not participate because support group meetings are hard to find where they live; following that were 79 (20.3%) respondents who did not participate because their working hours prevented them from doing so and 52 (13.4%) respondents did not participate because they did not have transportation to and from support group meetings [Table 4].
|Table 4: Barriers to support group participation among those who do not belong to support groups|
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There was no significant relationship between participation in HIV support groups and sex, age, marital status, level of education, employment status, and religion of participants. Participants whose date of diagnosis was greater than 10 years were found to significantly participate more in HIV support than those whose date of diagnosis was less than 10 years (P = 0.005) [Table 5].
| Discussion|| |
Knowledge of the existence of HIV support groups was high among the respondents; 60% of the participants were aware of support groups. This is similar to the finding in a study by Ndu et al. in 2011 in the same region in which 53% of the participants were aware of support groups. There was, however, no statistical difference between the two proportions (relative deviate= 1.37). Most of the respondents were diagnosed with HIV more than 10 years ago, 141 (32.8%).
Once they were diagnosed with HIV, the majority started antiretroviral drugs immediately and this showed the effectiveness of the center. More than half of the study population saw the need to belong to a support group but our study revealed that not the majority (9.5%) belonged to the support group. This uptake was very low compared with the findings by Ndu et al. in the same region in 2011 in which 46% of the participants belonged to support groups. The drop in uptake might have been due to the absence of incentives (in the form of transport fare to those coming from far places, foodstuffs distributed during special days like World AIDS Day and Christmas celebrations, etc.), which were initially available to those attending support group meetings but which were withdrawn at some points. Other reasons for non-participation included: support groups being hard to find where patients lived as noted by majority, 84 (21.6%), of the respondents. This is so, as most of the respondents lived far-away from the venue for the group meetings, some even attended the ART clinic from the different south-eastern states.
The next major reason why most 79 (20.3%) participants did not participate was that their working hours prevented them from doing so. This may be explained by the fact that most, 156 (36.3%), of the respondents were traders and probably sold their goods on Saturdays, on which day the support group meeting holds; and those who are civil servants might want to rest in the weekends. Fifty-two (13.4%) respondents did not participate because they did not have transportation to and from support group meetings. These findings were similar to previous studies in which access and availability of support groups in local communities, issues of the appropriateness of support group venues, lack of transport money to attend support group meetings, and work and lack of time to attend meetings were reported as barriers to participation in support groups in similar works.,,,,,,
Furthermore, 34 (8.7%) respondents did not participate in support groups because they had concerns about their privacy in support groups, and 41 (10.5%) did not participate because they did not want other people to know that they are HIV-positive. From our study and interaction with our respondents, we understood that some came from different locations outside Enugu state to get their ART, this is because they fear stigmatization and would rather travel miles to get their drug from places where they feel no one knows them; consequently, they would not want to get involved in any nearby support groups where their status may be made known. This is similar to the findings in a qualitative study conducted in South Africa in 2013: concerns about privacy in HIV support groups and fear that people would know about the HIV-positive status of the respondents were noted as the major barriers (although it was not the major barrier in our study). Also, slightly more than a quarter (26%) of the participants in that study did not attend support groups for fear of being stigmatized.
Some respondents did not participate because they did not like the fact that there are many persons in a group, as noted in a similar study which showed the large size of support groups as one of the reasons for non-participation of some respondents., Other reasons for non-participation included respondents not feeling they needed support group at the time, as also noted in a study by VanDevanter et al. Madiba and Canti-Sigaqa in their study among HIV-positive men observed that participants perceived the support they received from their families as adequate and as such did not need any further support from a group. Some other respondents did not participate because their home schedule prevented them; because they did not know support groups are available for HIV-positive people; and because they did not have permission from their partner or family to do so. Some others were not able to participate in support group meetings because of their ill-health. These observations are similar to the findings in a qualitative study conducted in a health facility in South Africa; participants expressed the following concerns as reasons for not participating in support groups: Did not know of the existence of the support group, family member or self being too ill, and had to ask permission from a partner. Some of these barriers were peculiar to females: a family member or self being too ill, having to ask permission from a partner, and their home schedule and health status did not allow them to attend support groups.
The impact of support group to the respondents was generally impressive as it has enabled them to freely discuss their experiences and needs in a supportive and conducive environment, to feel a sense of belonging again to the society; they also benefited from health education given during group meetings, no longer felt alone, and were better able to deal with stigma and discrimination. Some also benefited from one-on-one support and mentoring found among support group members. There was also a reduced frequency of HIV-related symptoms such as anxiety and depression. These findings are similar to those in previous works: Kalichman et al. in their study found that people who had not attended support groups reported more emotional distress, more avoidant coping, lower self-esteem, higher loneliness, and somatic depression than those who did attend. Ndu et al. in their study among people living with HIV receiving ART in University of Nigeria Teaching Hospital, Enugu found that a smaller percentage of those who belonged to a support group were depressed (20.0%) compared to those who did not belong to support group (21.8%). This implies that belonging to a support group is perhaps helpful in preventing depression among PLWHA. A similar finding was also observed in Cambodia in the year 2000, where 23% of members of a PLWHA support group said that they had been deterred from suicide, crime, and revenge. Even when there is depression, a study by Pfeiffer et al. showed that peer support interventions help to reduce symptoms of depression. Participation in support groups also encouraged participants to consistently attend appointments to clinics which eventually eliminate drop out in the treatment centers. With attendance to support group meetings and health education being delivered, majority of the participants have been empowered to self-manage their ailment. There has also been improved access to antiretroviral therapy, and clients have been enabled to get help when needed.
There was no significant relationship between participation in HIV support groups and sex, age, marital status, level of education, employment status, and religion of participants, as found in similar studies., However, participants who have known about their HIV status for a longer time (in this instance whose date of diagnosis was longer than 10 years) were found to significantly participate (P = 0.005) more in HIV support groups than those whose date of diagnosis was shorter, as corroborated in other studies.,,
| Conclusion|| |
In conclusion, our study has demonstrated that although many of our patients living with HIV/AIDS are aware of the availability and benefits of support groups, their participation is low. Diverse barriers to their participation were reported, which included poor access to support group meeting venues and job-related barriers. The authors suggest that efforts should be intensified by various stakeholders to overcome these barriers as support groups are beneficial because they help people living with HIV to overcome stigma and discrimination, provide a platform to share experiences and needs in a supportive and conducive environment, and enable them to be able to manage themselves better. Media campaigns should be undertaken by the Federal Ministry of Health and other key players to spread correct knowledge about support groups for people living with HIV. Also, governmental and non-governmental organizations should organize support group meetings in the rural areas to make it accessible to the people living there to attend, and already existing support groups should be strengthened so as to be more effective.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3], [Table 4], [Table 5]