Cultural adaptation approach.

Several models and frameworks have been proposed to guide the adaptation of psychotherapies [30,46,47]. We drew on the Ecological Validity Model (EVM) [46], due to its wide use in adaptation initiatives [48–50]. The EVM proposes eight components for adaptation [46]; we utilized six components adopted in an earlier study with refugees in Uganda [51], namely: (i) the social context, (ii) methods of delivery, (iii) negotiating differences in knowledge, values and practices, (iv) goals, (v) group relationships and (vi) language and metaphors [51]. Since EVM provides no clear guide on steps for adapting interventions, we limited its usage to the identification of adaptation components and then combined it with the Formative Method for Adapting Psychotherapy (FMAP) [37] as a guide to the adaptation process. FMAP utilizes a bottom-up approach with stakeholders and suggests five steps for adapting and testing psychotherapy. These steps include: (i) generating knowledge and collaborating with stakeholders; (ii) integrating generated information with theory and empirical clinical knowledge; (iii) reviewing the initial culturally adapted clinical intervention with stakeholders and revising the adapted intervention; (iv) testing the culturally adapted intervention; and (v) synthesizing knowledge produced by earlier phases and finalizing the cultural adaptation [37].

Participants.

We recruited n = 30 participants across eight categories of stakeholders; (i) counsellors working with adolescents in ART clinics (n = 5), (ii) child and adolescent psychologists (n = 4), (iii) educational psychologists’/ school counselors (n = 3), (iv) psychiatrists (n = 2), (v) spiritual leaders (n = 3), (vi) social workers (n = 3), (vii) graduate clinical or counselling psychology students (n = 3) and (vii) AWH (n = 7). The median age was 37 years, (SD = 10.4), with over half being females (n = 18). All participants were proficient in English and Luganda.

We leveraged the network of local organizations to recruit participants, including the Uganda Counselling Association, Uganda Clinical Psychology Association, Makerere University, psychiatrists through Butabika Hospital (a national referral psychiatric hospital), as well as HIV care providers and social workers recruited through the Infectious Disease Institute—a local non-profit research organization. Local mental health experts were purposively recruited based on their experience of working with AWH and/or knowledge of group psychotherapy, while convenience sampling targeting balance on gender and age was used to recruit AWH through the Network of Young People living with HIV/AIDS. Spiritual leaders were identified by adolescent peers. All participants received information on the study and provided written informed consent and assent (for minors) before recruitment into the study. Although the consolidated guidelines for the prevention and treatment of HIV in Uganda encourage AWH above 12 years of age to seek care without parental consent [6], we sought parental consent as a procedure recommended by the organization from which we recruited participants.

Procedure.

Our adaptation and testing procedure is outlined in Fig 1.

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Fig 1. Intervention adaptation process.

https://doi.org/10.1371/journal.pgph.0001605.g001

1. Generating knowledge and collaboration with stakeholders
   KM and RS who are both psychology graduates and trained in using the DNA-v facilitated two stakeholder workshops to begin the DNA-v adaptation process. The first workshop, held with local mental health providers and experts (all stakeholders except AWH), included: a (i) review of the DNA-v manual (an English version of the manual that was emailed to participants as preparatory reading a week in advance of the workshop); (ii) a group-facilitated review of the manual and other developed material during the first day of the workshop; and (iii) small group-facilitated discussions to assess the appropriateness of DNA-v, guided by the six domains of the EVM. Discussions lasted for four hours (with breaks). All discussions were conducted in English, recorded and later transcribed. We repeated a similar process with AWH one month later in a separate workshop to ensure their confidentiality and comfort with peers. The discussion with AWH was conducted in both English and Luganda and participants had the option to interact translingually. The discussions lasted for three hours (with breaks to allow adolescents to refresh). In total, we conducted two workshops at the generation stage, one with local experts and another with AWH.
2. Integrating generated information into theory and empirical clinical knowledge
   Following the workshops, we synthesized the information gathered from stakeholders with empirically supported literature on the adaptation of psychotherapy, and HIV care and treatment literature. We present details of the adaptations made later in this paper. Small group discussions during stakeholder workshops helped to maximize the involvement of attendees, minimizing the dominance of a small number of voices. We used group consensus when identifying modifications for integration. Suggestions across groups were compared to identify inter-group consensus and most recurring ideas were given top priority. We then calibrated the ideas against the norm of practices identified by the literature, before integration. In cases of inter-group contradictions, ideas were further discussed during the review stage until consensus was achieved. Two senior researchers, RW and RK, supervised the integration process. These researchers are trained in mindfulness and acceptance therapies and are experienced in intervention adaptation in Uganda.
3. Reviewing and revising the initial culturally adapted intervention with stakeholders
   We conducted an initial review of the adapted manual following the six constructs of the EVM with five local experts that had direct experience of working with AWH, who were purposively selected from the bigger stakeholder group. A small group allowed for an in-depth review of adapted material. We provided reviewers with the adapted manual a week before the expert panel meeting to acquaint themselves with the changes. During the review, KM and RK presented the modifications and the rationale underlying the changes. We conducted a similar process with all the AWHs who participated in step 1. We then conducted a second round of refinements to the intervention manual and materials. Further, we shared the adapted manual with the developers of the DNA-v (Joseph Ciarrochi and Louise Hayes) for review and feedback.

Analysis.

Before the stakeholder discussions, pre-determined criteria were identified to guide how consensus would be reached in the decision-making process. A majority vote approach was used to decide upon the key adaptations to be made [52]. We held discussions in small groups of five people who were tasked to come up with a group position on every modification item that arose from their deliberations. The research team used the most recurrent themes across groups, to synthesize with literature to inform adaptation.

Participants.

We worked with healthcare providers to recruit AWH (n = 9) from a group of older adolescents attending care at the study clinic (over eight interviews are considered sufficient for saturation) [53]. A convenience sample of participants was recruited from the clinic but maximumly varied by gender, age, and period spent on ART. All participants approached agreed to participate. The median age of participants was 17 years (SD = 1.53), participants were split almost evenly by gender (females n = 5 and males n = 4) and the majority had spent more than five years on ART (n = 7). All participants were proficient in both English and Luganda. We obtained written consent from participants above 18 years of age and both parental consent and participant assent for minors. Consent forms were in both English and Luganda.

Procedure.

During recruitment, participants were oriented about the study, particularly the study goals, duration, their rights and expectations and reasons for conducting the research. We also used this stage to establish rapport with study participants. After recruitment, we delivered the six 90-minute sessions of the adapted DNA-v to a group of AWH (n = 9) across three weeks at the clinic premises. Since all had completed the training, we conducted in-depth interviews (IDIs) with nine AWHs. Interviewers introduced themselves and explained the reasons for conducting the study before starting. IDIs lasted between 25–30 minutes and explored the acceptability of the modified DNA-v intervention from the AWH perspective. The first author, who has extensive training in using the DNA-v, and the third author, who is trained in mindfulness and acceptance therapies, conducted the training. At completion, three members of the research team (two males and one female), psychology graduates, trained in mindfulness and acceptance therapy and experienced in collecting qualitative data, who did not facilitate the training, conducted individual in-depth interviews with the training recipients using a semi-structured interview schedule. Using other members of the research team rather than the trainers to conduct the interviews was done to reduce socially desirable evaluations of the intervention [54]. Audio recordings from all IDIs which were predominantly in Luganda were transcribed and translated into English by two graduate students proficient in English and Luganda. Participants were assigned pseudonyms during the analysis and reporting of results.

Analysis.

We used a thematic analysis approach [55,56] to organize findings according to a priori thematic categories that aligned with the themes of the theoretical framework of acceptability-TFA [39], with the use of NVivo software (version 12).

Specifically, data were analyzed using abductive analysis; a hybrid of inductive and deductive thematic analysis [57]. Two authors from different disciplines (EK) and (KM) conducted the data analysis. Both authors listened to two of the audio recordings to become familiar with the data before analysis. The authors independently used open coding on three transcripts to develop codes that represented themes that were present across responses before they met to discuss, compare labels, and agree on a core set of codes to apply to all subsequent transcripts. They, however, remained open to including other codes that would emerge as the coding process proceeded. They further reviewed and discussed sample quotes to ensure that code definitions were consistent and appropriately applied to participants’ responses. In the next step, the codes that had been inductively generated were iteratively grouped into themes that were deductively developed based on the constructs of the TFA (perceived effectiveness, intervention coherence, self-efficacy, affective attitude, burden, ethicality and opportunity cost) to form an analytical framework. The subsequent transcripts were then indexed using the analytical framework, once themes were finalized writing up of the results began. To provide an illustrative example of our analysis process, codes such as ‘takes time’, ‘discomfort with language’ and ‘financial costs’ emerged from the inductive analysis. Using a deductive approach, these codes were grouped under ‘Burden’ as an a priori theme adopted from the TFA.

Language.

Informants observed that the manual was primarily written for native English speakers. The initial suggestion was to translate the manual to Luganda, the most widely spoken language in the central region. However, the presence of over 50 languages in Uganda made translation unfeasible. Informants agreed to use basic/plain English (British Level A2 English) locally considered as ‘primary school level English’. A native speaker of English familiar with DNA-v reviewed the language changes. Examples of changes are shown in Table 1. Additional adaptations to increase the acceptability of language included using indirect, rather than direct, speech, as well as the use of requests rather than directives. For example, ‘any suggestions on how we can make a good group?’ replacing ‘what makes a good group?’ was considered more appropriate and respectful in the Ugandan context.

Metaphors.

Local mental health experts found most symbolic representations in the DNA-v manual culturally and contextually incongruent. Illustrations such as ‘Notice the Noticer game’ were thought to be hard to understand. Further ‘random free hugs in Santori’ (a metaphor for creating sensations and feelings) were felt to be culturally unacceptable, with computer and internet-aided videos also impractical in resource-constrained settings. Further, the values and strength cards with White individuals in the images were perceived to be unrelatable. Informants suggested the use of local stories, trending events, songs, and familiar images on cards. We introduced a story of a person who grew up in the slums, and later became a popular presidential candidate; further, we supplemented the story with a game we named ‘life sacks’. This game involves wearing a polyethylene sack and trying uncomfortable and rapid movements. This exercise was intended to show adolescents that they do not have to struggle to fit in. Its chief message was that it is possible to change one’s life regardless of the situation, which is a central message in DNA-v [21].

We included a popular nursery school song “we began as goats” (‘twajja tuli mbuzi’) to depict how words do not entirely define who we are, which is an important step in cultivating mindfulness and acceptance [23].

Negotiating differences in knowledge, values and practice.

Local mental health experts compared and contrasted several of the assumptions of DNA-v to the socio-cultural realities in Uganda. Key comparisons included emotional expression, values, and cultivating mindfulness. DNA-v assumes an open expression of emotions with direct requests such as: ‘tell me how you feel’ as a way of accessing deep-seated feelings. Local experts observed that Ugandans are reluctant to be expressive in formal settings, have not been nurtured/socialized to communicate emotions openly, and tend to regard expressing negative emotional reactions as a weakness. We included sections in the DNA-v manual relating to session two (Noticer) to specifically address concerns about the expression of emotions and added visual cards depicting photos and words of various emotions.

Local mental health experts who were part of the review panel at Phase 3 also felt the values statements in the DNA-v manual were generic; living with HIV is a unique and life-changing experience, and thus, generic values might not fully represent what is meaningful to AWH. Experts recommended engaging AWH to identify additional health-related values before implementation. AWH identified taking care of my health, accepting myself, maintaining health-promoting routines and not being judged as important values. The research team used this information to create additional value cards and also added a stepwise narrative on cultivating mindfulness built around simple and familiar practices such as eating a banana and blowing up a balloon, to address critiques of the direct approach included in DNA-v.

Methods of delivery.

The EVM underscores the importance of location when adapting group psychotherapy. The DNA-v is designed as a school-based program, addressing participants as students and utilizing school-based scenarios as success case vignettes. Both experts and AWH did not find schools to be an appropriate environment for interventions targeting AWH. First, AWH revealed the stigma they experience at school from teachers and students. Second, local experts noted that a large number of AWH drop out of school, limiting the potential impact of a school-based intervention.

We noted the recommendations to deliver the intervention through health centers and adjust therapy to fit the conditions of AWH. Local experts suggested reducing the session time from 2 hours to 90 minutes and utilizing existing settings at clinics if uptake of the intervention is to be facilitated. We made the following adaptations: first, we changed the references from “students” to “adolescents”. We then adjusted the session time to 90 minutes but added extra plays suggested by adolescents such as “cards laid face down on the ground” (Biggula) to represent the challenge of choosing (a DNA-v process), replacing lengthy narratives.

Group processes.

We expanded the criteria for group composition beyond what was identified in the DNA-v manual. Age, group size, confidentiality, and trust were key areas for consideration when forming groups. Local experts suggested grouping adolescents by development stage (e.g. 14 and below and 15–19 years) and keeping the group size between 6–12—the typical size for group therapy in this setting. The DNA-v manual does not address group composition; thus, we added a section in the introduction to describe suggested group compositions and emphasize confidentiality to limit stigma and marginalization. We further modified the group-generated confidentiality tenets described in DNA-v, by assigning the facilitator (group therapy lead) the responsibility to emphasize confidentiality and facilitate group agreements. We also included instructions to contact the facilitator in the event of any discomfort or breach of confidentiality.

Goals.

Adolescents indicated that having good relationships with family and friends, and getting accepted are things they would love to see in their lives. We expanded the goal of DNA-v to incorporate these suggestions [Table 1]. We also revised the labeling of the intervention from therapy to life skills training program because AWH associated the word ‘therapy’ with medicines, as it is often used by providers when one is failing on treatment.

Social context.

We included adolescent peer leaders as guided group facilitators. Informants raised concern about the DNA-v creating extra work for overburdened providers and suggested the inclusion of peer leaders. Thus, we revised the definition of a facilitator in the manual to be inclusive of peer leaders: “a facilitator should either be; a counselor, or adolescent peer leader (guided by a counselor), having knowledge about HIV, trained in using DNA-v manual, and having prior exposure to group facilitation”. We also revised the list of training materials to remove technologically powered aids such as computers and replaced them with traditional training aids such as manila paper, markers and stickers. This adjustment aimed at addressing space and technological constraints.

Perceived effectiveness.

When reflecting on the extent to which the DNA-v intervention was likely to achieve its purpose, AWH expressed optimism that the DNA-v can support adolescents who interrupt treatment to improve adherence by refocusing them on what is most important in their lives. Sherry [17- year-old female AWH] captured this sentiment thus, “In case like when a girl gets a boyfriend, they don’t want them to know their status so they leave medicine. But when you bring them in this study, of course, they’ll know that their life is most important.” AWH also reported that the DNA-v helped them to develop the confidence to face the fears surrounding their life. Anna [19 –year-old female AWH], for instance, noted that “I should start facing some of my fears, it helped me to start seeing things again in a different perspective”. By developing the confidence to face their fears AWH felt empowered to make careful decisions about their lives as stated by Tash [17-year-old female AWH] who said, “It helps you make decisions. It helps you forego some things the head always tells you, then you say, I am sticking on this”.

Besides, AWH expressed that DNA-v engendered self-belief and gave them the confidence to deal with the negative judgment they always experience. Smart [16-year-old male AWH] typified this sentiment when he noted, “At the garage where I work they despise me a lot because I am very small which makes me feel bad. This training has taught me to believe in myself.” Some of the AWH linked gaining self-belief to the ability to make better life decisions as noted by Tash [17-year-old female AWH]: “I now know how to use my body, I know how to let go and I know how to focus on what I want.” Furthermore, AWH indicated that besides learning how to deal with painful experiences in their lives, the DNA-v allowed them to open up to inner feelings. Portable [16-year-old female AWH], noted thus: “By the time I came here, I had anger because of how I am treated at my uncle’s home. A very big thing has been taken out of my situation.” Similarly, Jay [18-year-old male AWH] noted that “Even though you are at the point of hating yourself, this brings you to speak how you feel at heart.”

Affective attitude.

Relating to how participants felt about the DNA-v, AWH found the DNA-v to be important in addressing most of their life challenges as noted by Anna [19 –year-old female AWH] who said, “I found it important because when you look at it, you find yourself tackling on each and every aspect of life.” In addition, some participants noted that going through the DNA-v normalized experiences in their lives. This was the case for Portable [16-year- old female AWH], who noted, “I liked the training because there are things I thought I was only one facing them, I’ve discovered that even other people go through it.

Self-efficacy.

Under this construct of the TFA, we report on AWH’s willingness to use the skills gained from the DNA-v. AWH expressed confidence in using skills from the DNA-v as alluded to by Portable [16-year-old female AWH] who said, “I am someone who has always been making abrupt decisions, but now I hold on a bit.” Furthermore, AWHs who double as peer leaders expressed willingness to use the DNA-v to support fellow adolescents including those who are not living with HIV as noted by Jay [18-year-old male AWH] when he said, “I’ll use it for my fellow adolescents even though they not on ARVs, these are the ones we hang out with most, they need it too.”

Intervention coherence.

We looked at the ease with which AWH understood the content of the adapted DNA-v model. AWH found the DNA-v easy to understand since it relates to their lived experiences, as stated by Jay [18-year-old male AWH], “It was easy for me to understand because all that they were teaching I had ever experienced,” while the use of day-to-day examples made practice easy for Tash [17-year old female AWH] who noted, “It is in a simplified language and uses the normal things, they are easy to do”.

Ethicality.

In assessing the congruency between the goals of the DNA-v and AWH values system, participants reported that the intervention promoted self-acceptance which is an important value in their lives as AWH. Smart [16-year-old male AWH], in this regard, observed “It causes you to accept yourself, because if you don’t, you can’t overcome anything.,”

Burden.

Relating to effort and time required to participate, AWH reported having invested a lot of time to complete DNA-v sessions, but were optimistic that the investment was worth it, as stated by Jay [18-year-old male AWH] when he said, “It has taken some time but it was not a concern to me because I saw that this thing concerns me as a person from when it begun”. Furthermore, some expressed discomfort with parts presented in English even though sessions were a mix of both Luganda and English, as stated by Smart: “At first it wasn’t easy for me to follow properly when English was used but I kept trying”. Others shared concerns about the distance they had to cover to come to the clinic, the frequency of visits, and how they would be able to meet transport costs in case there was no transport refund. Anna [19 –year-old female AWH] noted, “First of all, I don’t live very near, I live in Makindye and it’s a bit far, I spend a lot on transport and it’s like we have to attend many times.”

Opportunity cost.

Finally, we looked at possible benefits AWH will have to forego to be able to participate in the DNA-v sessions. AWH indicated that they had to miss school, work, and other activities to complete sessions and suggested a weekend program to be more appropriate. Many shared Anna’s [19 –year-old female AWH] sentiment when she said, “I have found it a bit challenging because I had to attend this and again school at the same time. Saturday is a better day because this is also important.” Pat, [19-year-old female AWH] agreed thus, “I stopped all what I had to do then I decided to come to see what you’re telling us”.

To complete the adaptation process, we synthesized knowledge produced from the two study stages and made a final round of refinements to the intervention where necessary as presented in Table 2.

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Table 2. Additional refinements to the DNA-v after the testing phase.

https://doi.org/10.1371/journal.pgph.0001605.t002