The goals for ALHIVs will only be met through strategies targeted to meet their specific needs. We conducted a single-group pre-post test study from June to January We adapted an existing support group curriculum and delivered it through trained facilitators in 5 support groups by using Facebook groups. This pilot intervention included five 1-week sessions. We conducted structured interviews with participants before and after the intervention, extracted clinical data, and documented intervention implementation and participation. In-depth interviews were conducted with a subset of participants at study completion. Quantitative data from structured interviews and group participation data were summarized descriptively, and qualitative data were coded and summarized.
They give them the necessary support, give a second wind and the will to live. People join support groups to cope with any difficult situation.
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It is very difficult to talk about your HIV status, especially when it comes to talking with your closest person. Support groups gather people living with HIV, just like you.
You will no longer be lonely because you will find yourself among people who are concerned about the same issues.
None of them will treat you with prejudice or unnecessary pity.
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No one will ask you tactless questions or evaluate your actions. The main condition of the mutual aid group is confidentiality. The group can include a variety of people, regardless of age, sexual orientation and life experience. Everything that happens during the work of the group remains inside it - this is the main rule. Therefore, you can be sure that no one but your group members will know about your HIV status and your problems.
People often come to the support group just to tell about themselves. You will be listened to. Your fears, doubts and experiences will be shared by people who have overcome difficult life periods: accepting their HIV status, difficult conversations with the family, starting treatment and adapting to therapy.
They will treat your questions with understanding, and you can find answers to them together. After consulting with a group counselor and its members, it will be easier to find the right words to talk with relatives.
When communicating you will understand that HIV is not a sentence but a disease. You can live a very long time with it. Communication in a group will allow you to learn about the practical experience of the life of people with HIV, learn to take care of your health. You will realize in practice that most problems can be solved. With the help of people like you, you will find your own unique way of dealing with the difficulties of living with HIV.
Ask other people living with HIV for suggestions. HIV support group listings (including online support groups) can generally be found in lesbian and gay publications or in HIV periodicals and monthlies. For faith-based groups, contact your local church, mosque, synagogue, or temple. Referrals can also often be found through local HIV hotlines. HIV-related stigma, disclosure-related issues, lack of social support, and limited HIV knowledge impede adherence to antiretroviral therapy (ART) and retention in HIV services. The goals for ALHIVs will only be met through strategies targeted to meet their specific needs. Meet with other local people who are HIV positive, or who have been affected by the disease. Gather to offer support and companionship. Friends and family are welcome!
You can discuss all the issues that may bother you: how to maintain your health, how to tell your partner or parents about it. In time, you will be able to help other people who come to the group. There are mutual aid groups in almost all cities of our country. You can easily fin in on the Internet.
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This will help you gain confidence in your abilities and will relieve you of being alone in solving the problems of living with HIV. Category: General Issues. Main types of assistance services Support groups are groups in which you can share your experience, problems and ways to solve them. Digital health interventions such as mobile phone reminders improved adherence among adults in some low- and middle-income countries [ 22 - 27 ].
Two recent studies targeting youth in South Africa and the United States demonstrated that online social network interventions could be acceptable and feasible in this population [ 28 - 29 ]. A study in Nigeria found that more than half of the females aged years owned a phone, and almost all who did not own a mobile phone had access to one [ 31 ]. The rapid increase in mobile phone use in Nigeria indicates the potential of digital health strategies to help meet the support needs of ALHIVs.
We conducted a mixed-methods, single-group, pre-post test study from June to January Participants were recruited from 3 health facilities in Akwa Ibom State and enrolled to receive 5 intervention sessions [ 32 ]. Data were collected through face-to-face interviews using a structured questionnaire at baseline and endpoint. In-depth interviews IDIs with a subset of purposively selected participants were conducted at endpoint and stratified by participation level.
Participation data were collected using a Facebook group analytics tool [ 33 ]. Written parental permission and adolescent assent were obtained from participants aged years. Secret Facebook groups limit membership and access to those invited and added by a group administrator.
Content in secret Facebook groups can be seen only by members. Intervention components included informational messages and moderated group discussions, and 5 of 14 Positive Connections sessions were included in this study: Understanding HIV; Disclosure and Developing Trust in Relationships; Treatment and Adherence; Nutrition and Health; and Sex and Relationships.
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Sessions included activities for the facilitators to post and subsequently lead discussions. Four facilitators, recruited from existing community-based organizations and previously trained to lead in-person support groups for people living with HIV, received a 1-week training on the intervention.
Study support groups began with an initial, in-person meeting during which participants met each other and the facilitator. The facilitator described the intervention and the group agreed upon ground rules for interactions, emphasizing the need to maintain confidentiality for group interactions.
All participants received a basic mobile phone also known as a feature phone that could access Facebook, regardless of current phone ownership, because our primary interest was to determine whether the intervention could be implemented as designed and if participants would engage in it, given the opportunity. Participants selected the cellular network on which the phone was registered and were allowed to keep the phones at the end of the study. Each participant received Naira USD 3.
This amount of data translates roughly to social media posts with photos [ 36 ].
Literacy was assessed by data collectors during eligibility screening by asking the participant to read aloud three short sentences from the intervention content. If the data collector determined that the participant could read all or most of the sentences, the person was deemed eligible. Participants who could not read at all or struggled with all three sentences were deemed ineligible. ALHIVs who planned to move from the area before the end of the study, were enrolled in an in-person support group, were enrolled in another HIV-related research study, or were critically or severely ill at enrollment were excluded from the study.
Eligible participants were sequentially recruited during clinic visits. Additionally, participants were identified from medical records by a clinic staff and contacted by telephone to tell them about the study and, if interested, to come to the facility to learn more about the study.
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IDIs were conducted for 8 participants with moderate to high active participation and 8 participants with no to low active participation at the study endpoint. We collected demographic information of participants sex, age, relationship status, education, occupation, and religion and their HIV infection date of diagnosis, date of start of ART, disclosure to others, viral load, and CD4 [cluster of differentiation 4] results.
We also collected data on preintervention access to mobile phones, the internet, and experience with social media. We measured intervention implementation and participation using Grytics software [ 33 ]. To measure fidelity, we determined if intervention activities occurred within 1 week of when they were scheduled and the proportion of scheduled activities completed.
In addition, we measured if and how participants participated in each scheduled activity. Quantitative data were analyzed descriptively and independently verified by a second analyst.
HIV Positive Living, Dating and Support Group. 4, likes 35 talking about this. Public Figure. Self-help groups differ from the support group only in that the responsibility for the positive process lies on the shoulders of the HIV-infected themselves. To create this type of group support, an activist group of people living with HIV is needed. Also, there are dating clubs for HIV-positive people, thanks to whom many have found a mate. Members of our HIV/Aids support group will have access to the latest in social network technology including a dedicated activity stream, forum and chat room. In addition members can participate in the larger wellness challenge through our inspirational wellness tools: wellness tracker, friend reminders, mood mapping and sending kudos.
For participation data, posts original message and comments replies to a post were equally weighted and each assigned a value of 1. IDIs were audio recorded and transcribed into English. Some IDIs were conducted in local languages and then simultaneously transcribed and translated.
Qualitative data were analyzed by an applied thematic approach using NVivo 11 [ 3738 ]. A codebook was created on the basis of the interview guide, and emergent thematic codes were added during analysis.
Summary memos documented overall themes related to the study objectives. A total of 41 adolescents enrolled in the study and completed a baseline interview, of whom 38 started the intervention and 35 completed the endpoint questionnaire.
A flow chart describing the identification, enrollment, and follow-up of participants is presented in Figure 4.
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Study flow chart. Several individuals initially deemed eligible according to clinical records were later found to be ineligible due to incorrect age information in their medical records. Participants were nearly equally divided by sex Table 1. About half of the participants were enrolled in school, mostly in secondary school, and one-quarter were employed.
All participants had a home or primary residence. Among those with a recorded viral load, half were virally suppressed Table 1. Three-quarters of all participants lived with one or both parents, and the rest lived with other family members, including one participant who was married and lived with the spouse Table 2. Most participants who completed the endpoint questionnaire 34 of 35 participated in the intervention sessions Table 5. The majority of intervention participants took part in all sessions and reported actively commenting or asking questions at some point.
Participation varied widely by session and group Figure 5. Within groups, participation varied considerably Figure 6. Each group had members who were considerably more active than the others. Similarly, the group with the lowest member participation had a facilitator with the lowest activity. Through the IDIs, we explored the challenges faced during implementation that might affect participation.
Just over half of the 16 IDI respondents mentioned occasional problems with charging their phone or running out of data. About one-third of IDI respondents mentioned issues with cellular networks, including poor connectivity or slow data speed, of whom 2 participants lacked network coverage when they traveled and 3 had persistent network problems at home.
One of them commented the following:. During the session on adherence, participants were asked to upload a photo of an adherence plan; however, none of the participants did so.
Several IDI respondents described difficulties with photo uploads as the reason for not uploading an adherence plan photo.
One other IDI respondent noted that the pictures did not always display correctly on his phone. One IDI respondent said he thought another group member was sharing information publicly from the Facebook group, although he did not state that his HIV status or that of others was compromised:.
Some of our members I used to see some of them, some people who are in the public group start asking questions, are you, where, who are, where are from So sometimes I used to sit them down in the Facebook and warn them. Overall, each of the facilitators for the 5 groups posted most of the scheduled activities and did so on time Table 6. Quizzes polls aimed to assess knowledge and stimulate discussion proved problematic. IDI respondents noted that quizzes did not appear correctly formatted on their phones.
In response, facilitators posted quiz questions and response options as comments. All participants who completed the endpoint questionnaire agreed that the intervention was useful: They enjoyed taking part in the Facebook group, felt comfortable with the facilitator and other group members, and wanted to continue to participate in the group Table 7. When asked to describe what they liked about the intervention, IDI respondents, both low and high engagers, most commonly reported that they enjoyed the intervention because it was educational or informative.
I am a very timid and shy person. But the intervention helped me. There are certain things I was able to overcome. I have decided to open up and feel good about myself. I feel comfortable, I feel I have confidence in myself. So, I really like it has really done a lot of things in my life.
A few participants mentioned that they liked the confidentiality of the online forum and learning how to use Facebook:. I feel safe from exposing my status to other people. It was very good, I like itWell, what I feel about having a Facebook group is very, very secured.
One participant was concerned about people learning of her HIV status by looking at the phone, but now feels comfortable:. At first, I was very scared.
I was like what if someone should just carry my phone and see and say ha! A few participants said they did not like low participation from other group members:. Participants had few specific recommendations to change the intervention. Two participants thought some group members may require more explanation on using Facebook in terms of etiquette for posting comments.
Participants who wanted to include older youths said younger participants could learn from older participants; those who preferred the current age range said younger ALHIVs may be afraid or less open to interacting with older youths. None of the participants preferred an in-person support group without the online group. This online support-group intervention was feasible to implement and highly acceptable among the ALHIVs who participated in the study.
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We obtained important information on specific challenges and ways to improve the intervention in order to enhance delivery and participation. The level of active participation varied, within and across groups, which is similar to in-person support groups [ 21 ].
Group participation appeared to correlate with facilitator activity, although other factors such as logistic issues also played a role in individual participation within groups. Notably, the facilitator with the lowest overall participation performed the worst on timely and complete posting of sessions. In the future, experienced, dynamic facilitators with adequate mastery of intervention delivery should be recruited; however, even participants with low active participation reported high levels of satisfaction and appear to have benefitted from the intervention.
With social media, the ability to follow conversations may allow those who are not comfortable commenting, to learn from others in the group [ 3940 ]. Basic literacy was an important factor to the success of the intervention. Education levels are relatively high in southern Nigeria; As such, implementing this intervention for individuals with low education levels could prove more difficult.
The time taken for identification and enrolment of adolescents through health facilities was longer than anticipated. Although Nigeria bears the second-highest burden of HIV on the continent in terms of absolute numbers of people infected [ 42 ], its prevalence is relatively low, with higher pockets of concentration in certain geographic areas [ 43 ].
Facility staff attempted, without success, to reach several patients through their recorded contact information, which highlights the challenge of poor retention in health care services among this age group.
Although inclusion of fewer eligible participants than anticipated complicated study enrollment, it supports the potential role of an online intervention that does not require individuals to live near each other or travel to a designated location and could connect people across a broader geographic area.
We also faced a few challenges during implementation of the study.
Considering the limitations of the study phones, future interventions should use smartphones, which are increasingly popular and affordable, even in low- and middle-income countries [ 45 ]. Network coverage problems also limited use of the intervention among some participants.
Despite these challenges, most subjects participated in most sessions. Surprisingly, all participants who voiced an opinion preferred online support groups, either alone or in combination with an in-person group, but none of them preferred in-person groups alone.
The global trend toward use of and comfort with social media among young people seems to have reached youths in periurban and rural southern Nigeria [ 46 ]. This study had a few limitations. The nothatliz.comobability sample prevents generalization of the results beyond the study sample. In addition, we adapted only 5 of 14 sessions from Positive Connections; therefore, we do not know if participation may change with a longer curriculum.