My story —HIV positive adolescents tell their story through film

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My story —HIV positive adolescents tell their story through film
  “ My story ”— HIV positive adolescents tell their story through  󿬁 lm N. Willis a, ⁎ , L. Frewin a , A. Miller a , C. Dziwa a , W. Mavhu b , F. Cowan b,c a  Africaid, 12 Stone Ridge Way, Avondale, Harare, Zimbabwe b Centre for Sexual Health & HIV/AIDS Research, (CeSSHAR), Harare, Zimbabwe c University College London, Gower Street, London, United Kingdom a b s t r a c ta r t i c l e i n f o Available online xxxx Keywords: Digital storyNarrative therapyHIV AdolescentsCoping TheglobalcommitmenttouniversalaccessforpeopleinneedofantiretroviraltherapyhastransformedthelivesofadolescentswithHIV.Incontrast,therehasbeenlimitedcommitmentatpolicyorserviceleveltotheneedforeffectivetherapeutic interventions which can help them tocope with theirlifeexperiences. It isimperative thatthe scale up of antiretroviral therapy programmes is accompanied by evidence-based therapeutic approaches if wearetoassistadolescentstomakeinformedtreatmentandsecondarypreventiondecisionsandtoenjoyhappy,ful 󿬁 lledlives.Thispilotstudy sought toevaluatethedigitalstorytellingprocessasa therapeutic intervention for12HIVpositiveadolescentsandyoungpeoplewithinAfricaid'sZvandiriprogrammeinHarare,Zimbabwe.Draw-ing on narrative therapy, each storyteller created a digital 󿬁 lm in which they narrated their life experiences anddominant themes intheirlives. Storytellers foundtheprocess therapeutic asithelpedthemtomoveaway fromthe negative themes which dominated their lives to a newer, richer perspective of their lives in which they hadovercome challenges. Their  󿬁 lms have provided caregivers and programmers with new insights into the chal-lenges they faced and appropriate interventions for other adolescents living with HIV.© 2014 The Authors. Published by Elsevier Ltd. This is an open access article under the CC BY license(http://creativecommons.org/licenses/by/3.0/ ). 1. Introduction Theglobalcommitmenttoscalingupaccesstoantiretroviraltherapyhas dramatically improved the survival of children and adolescentswith HIV. Of the 34 million people living with HIV, 2.2 million areyoung people aged 10 – 19 years (WHO, 2012). In Zimbabwe there arean estimated 173,031 HIV positive children under 15 years with anestimated 7801 new paediatric infections in 2011. 100,805 of thesechildren are estimated to be in need of antiretroviral therapy whilstonly 46,000 were receiving treatment at the end of 2012 (DSS, 2012).Children with HIV are now surviving into adulthood and havingchildren of their own. (See Table 1.)Despitesurvivalimprovements,thechildhoodsofchildrenandado-lescents living with HIV (ALHIV) are typically dominated by numerouscomplex physical, psychological and social stressors which impact ontheirwell-beingandaffecttheirabilitytoenjoyhappy,healthy,ful 󿬁 lledlives. Yet in contrast to policy and programmingfor antiretroviral ther-apy,therehasbeenrelativelylittlecommitmenttotheneedforeffectivetherapeutic interventions that can help them to cope with their lifeexperiences.The lives of children and adolescents with HIV are typicallycharacterised by frequent illness and hospitalisation (Ferrand et al.,2007), grief and bereavement for parents and siblings (Parsons, 2012) and the need to come to terms with their own HIV status, a processthat is commonly delayed and this can result in psychological chal-lenges (Butler et al., 2009). The negative effect of these experiences isfurther compounded by stigma and discrimination which children andadolescentsperceiveand/orexperience,whetherathome,school,com-munityorsocietyatlarge.Thisisexacerbatedbygrowthdelayandskindis 󿬁 guration, which are common in children and adolescents with HIV (Ferrand et al., 2007). They may have cognitive impairment that mani-fests as poor executive functioningand reduced mental speed (Ferrandetal.,2007). This intellectualimpairmentisexacerbatedbypoorschoolattendance. Adolescents with HIV face overwhelming challenges relat-ed to emerging sexuality and concerns about relationships, futurechild bearing and marriage.These experiences result in poor con 󿬁 dence and low self-esteem. Itis increasingly recognised that adolescents are at risk of poor mentalhealth due to their life experiences. A study in Harare, Zimbabweamongst 229 adolescents with HIV demonstrated that psychologicalwell-being was poor (median score on Shona Symptom Questionnaire[SSQ] 9/14) with 63% at risk of depression. Self-reported adherence toantiretroviralswassub-optimal. MedianSSQscore was higher amongstthose with poor adherence to antiretroviral therapy (Mavhu et al.,2013). Children and Youth Services Review xxx (2014) xxx – xxx ⁎  Corresponding author at: Zvandiri House, 12 Stone Ridge Way, Avondale, Harare,Zimbabwe. Tel.: +263 731 253205. E-mail address:  nicola@zvandiri.org (N. Willis). URL:  http://www.africaid-zvandiri.org (N. Willis). CYSR-02398; No of Pages 8 http://dx.doi.org/10.1016/j.childyouth.2014.03.0290190-7409/© 2014 The Authors. Published by Elsevier Ltd. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/3.0/ ). Contents lists available at ScienceDirect Children and Youth Services Review  journal homepage: www.elsevier.com/locate/childyouth Please cite this article as: Willis, N., et al.,  “ My story ”— HIV positive adolescents tell their story through  󿬁 lm,  Children and Youth Services Review (2014), http://dx.doi.org/10.1016/j.childyouth.2014.03.029  The effectiveness of antiretroviraltherapy depends onhighlevels of adherence, yet adherence is challenging particularly for adolescents.Poor adherence to antiretroviral drugs results in inadequate viral sup-pression and subsequent treatment failure. Various studies have nowcon 󿬁 rmedhighlevels ofvirologicalfailure in theadolescentpopulationresulting in the need for  ‘ second line ’  antiretroviral drug combinations(Charles et al., 2008; Nachega et al., 2009; Ryscavage, Anderson,Sutton, Reddy, & Taiwo, 2011).Thesediverse,complexchallengesthreatentooverrideanyther-apeutic bene 󿬁 t of antiretroviral therapy if not adequately ad-dressed. Conventional approaches to helping young people withthese challenges have focused on a variety of psychosocial supportinterventions such as counselling, memory work and supportgroups (USAID, 2012; WHO, 2009). However, these vary greatly intheir quality and content and often little is known as to their effec-tiveness. In the recently launched WHO guidelines (WHO, 2013a)most recommendations relating to adherence support for adoles-cents were made on the basis of expert opinion (WHO, 2013b).This is in part because, until recently, it was assumed that perinatallyinfected children died within the  󿬁 rst two years of life. As a resultscale up of antiretroviral therapy to children in low and middle in-come countries has lagged behind that in adults. Even in adults fewadherence interventions have been rigorously evaluated. Develop-ment and rigorous evaluation of more innovative adherence inter-ventions for adolescents are consequently lacking and the sameapplies to psychosocial support interventions. It is imperative thatculturally appropriate adolescent and family-centred interventionsare developed which engage adolescents in a therapeutic process,acknowledge their life experiences and help them to cope withtheir experiences so that they can move forward in their lives. 1.1. Africaid Africaid is a non-governmental organisation in Harare, Zimbabwe(www.africaid-zvandiri.org).ThroughitsZvandiri ‘ AsIam ’ programme,Africaid provides treatment, care, support and prevention services forchildren and adolescents with HIV which complement their clinic-based care. These community interventions are primarily led by HIV positive adolescents and ensure a holistic approach which seeks to im-prove both psychosocial well-being and health outcomes.Africaid has worked with HIV positive adolescents on a variety of therapeuticapproachesincludingtheuseofstorytelling,forexample “ Our Story ”  book (Africaid, 2006). In 2010, Africaid piloted a digitalstorytelling project with 12 HIV positive adolescents from Zvandiri.The primary goal was to evaluate the digital storytelling process asa therapeutic approach to helping young people come to termswith the events in their lives and to develop coping strategies. Thesecondary goal was to explore the potential for this approach as anadolescent-led advocacy and training tool. 1.2. Narrative therapy This project is based on the assumption that people experienceproblemswhenthestoriesoftheirlives,astheyorothershaveinventedthem,donotsuf  󿬁 cientlyrepresenttheirlivedexperiences.Itrecognisesthat the stories that people continually tell each other and themselvesare the most powerful in 󿬂 uence on the way in which they understandthe world, live their lives and de 󿬁 ne their identities. These stories arecommonly distorted by unrecognised and unexamined social norms.Narrative therapy assists an individual to re-story their life in waysthat promote healthy development rather than keeping the persondominated by negative perceptionsof themselves and their lives. It en-courages the storyteller to regain a sense of authorship and re-authorship of their own experiences in the telling and retelling of their own story (White & Epstein, 1990), to see their experiences forwhat they are, rather than, as other people would have them believethem.Narrative therapy is based in  ‘ social constructionism ’  or the ideathat the way people experience themselves and their situation is “ constructed ”  through culturally mediated social interactions (Shapiro& Ross, 2002). People tell dominant stories where certain aspectsand themes have come to represent their experiences and these be-come a powerful factor in reinforcing and embedding the person'sperception of her dilemmas and con 󿬂 icts, and of her view of herself.This methodology is also drawn on in Memory Work, a psychosocialinterventionwhichaimstobuildresilienceinchildrenthroughhelp-ing them to understand their family history and to reconstruct theirlives (Denis, 2012).Storytellingis bynomeansnew. InallAfricancultures,a strongoraltradition has enabled the stories of its people to be passed downthroughgenerations.InZimbabwe,theoraltraditionof  ‘ ngano ’ involves  Table 1 Study participants/characteristics. Pseudonym Age Sex OrphanstatusPrimarycaregiverAge atdiagnosisAge atdisclosureYears betweendiagnosis anddisclosureDurationon ARVsSubject of story1 Lindiwe 20 F Total Maternal aunt 14 15 1 4 Life2 Susan 21 F Total Sister 13 13 0 8 Life3 Amanda 20 F Total Grandmother 16 16 0 2 Life4 Precious 22 F Total Paternal aunt 15 15 0 7 Life5 Keith 20 M Total Grandmother 16 16 0 3 Life6 Brian 22 M Total Grandmother 16 16 0 4 Life7 Frank 22 M Total Uncle 17 17 0 4 Adherence8 Tendai 20 F Total Maternal aunt 16 16 0 4 Stigma9 Mazvita 21 F Total Aunt 16 17 1 3 Disclosure10 Rudo 22 F Total Maternal aunt 14 14 0 6 Relationships11 Alan 21 M Total Grandmother 16 16 0 4 Support groups12 Nigel 18 M Paternal Mother 14 14 0 3 Getting tested Shaded area = Workshop 1, Non-shaded area = Workshop 2.2  N. Willis et al. / Children and Youth Services Review xxx (2014) xxx –  xxx Please cite this article as: Willis, N., et al.,  “ My story ”— HIV positive adolescents tell their story through  󿬁 lm,  Children and Youth Services Review (2014), http://dx.doi.org/10.1016/j.childyouth.2014.03.029  thetellingoffolktales.Althoughonepersonnarratesthestory,listeners(mostly children) play an integral part in shaping the ngano becausethey are involved in the narrative process. The traditional form of thengano goes from negative to positive, providing a  ‘ fairy tale ’  ending.The real life ngano are more realistic and some maintain their negativestancethroughout. Overall however, thepurpose of nganowas to instilasenseofhopeinchildrenandgivethemstrengthtoendure,inthebe-lief that things will always turn out alright in the end (even if this notalways the case). The folktales have evolved over time to incorporateideas that are relevant to urban children and are still commonly usedtoday(forexampletalesnowincludementionofcarsorincorporateEn-glish phrases which they understand) (Makaudze, in press; Mutasa,Nyota, & Mapara, 2008).Althoughstorytellingisdeeplyrootedintraditionalculture,childrentoday are rarely afforded the opportunity to tell their own stories — stories which are full of challenging, overwhelming experiences withwhich they are required to cope and grow. Where life is dominated bychallenges, there is a high risk that children and adolescents with HIV become de 󿬁 ned by these dif  󿬁 culties. 1.3. Digital storytelling  Digital storytelling builds on the narrative therapy approach by en-abling the individual to re 󿬂 ect on their life and experiences, with thenarration of their storythroughdigitalmedia (Lambert, 2013). Thesto-rytellerproducesashortvideo-clip,illustratedwithphotographs,draw-ings, words and music. Through participating in this process, theindividual is helped to re-tell their own story in a way that promoteshealthy development.Thereisalargeglobaldigitalstorytellingmovement.However,asfaras we are aware, there have been no digital storytelling initiatives car-ried out speci 󿬁 cally with adolescents living with HIV within the south-ern African region to date and there is little evidence of its applicationamongst this group, either as a therapeutic intervention or advocacytool. Yet if this methodology provides an effective, acceptable and sus-tainable intervention for young people with HIV, it will provide a valu-able tool for enhancing more traditional counselling services and incomplementing clinical care for this group. 2. Methods  2.1. Overall design Twelve adolescents attending Africaid support groups were purpo-sively selected to attend a ten day digital storytelling workshop duringwhich they would create their own digital stories. Six created storiesabouttheirlivesandsixcreatedstoriesrelatedtospeci 󿬁 cthemes.Story-tellersoptedtoshowtheir 󿬁 lmstotheircaregivers.Twofocusgroupdis-cussions were held with storytellers on completion of their  󿬁 lms andone focus group discussion was held with caregivers. Detailed  󿬁 eldnotes including verbatim quotes were written during the focus groupdiscussions.  2.2. Study setting  The study was set within Africaid's Zvandiri programme in Harare,Zimbabwe. At the time of this pilot project Africaid had 540 supportgroup members aged 5 – 24 years and ran 20 support groups acrossHarare. All support group members are aware of their HIV status andare engaged in treatment and care through local clinics. The majorityof the attendees are from low income residential suburbs/townshipsinitially established for the urban poor during colonial times and arecharacterised by densely packed housing.  2.3. Sampling  Twelve HIV positive young people (aged 18 – 22) enrolled inAfricaid's Zvandiri programme in Harare were purposively selectedto join the project. Selection was made on the basis of previous in-terestinstorytellingprocessesandmediatechniques.Theywerere-quired to have knowledge of their HIV status, to be able to read andwrite and free to attend for the duration of the workshop. It was madeclear that they were free to withdraw from the process at any time.Workshop attendance did not interfere with clinic appointments orschool attendance.  2.4. Technical review group A technical review group was convened prior to the project, includ-ingtwoyoungpeoplelivingwithHIV,oneHIVadvisor,onechildhealthadvisor,onepaediatric/adolescentHIVnursecounsellorandamediaed-ucator. Its role was to  󿬁 nalise the project design, oversee implementa-tion and evaluation and ensure the appropriateness of activities.  2.5. The digital storytelling workshop Two ten day digital storytelling workshops were held with a groupof six participants (storytellers) per workshop. These were facilitatedby a media expert (LF) and a specialist paediatric/adolescent HIV nurse counsellor (NW). Both facilitators were well known to all story-tellers. The workshop was held at Africaid's support centre as this wasconsidered to be a safe, familiar environment for the young people.The ten-day digital story workshop was adapted from Lambert'sseven steps of digital storytelling (Lambert, 2013) and Payne's descrip-tionofthenarrativetherapyprocess(Payne,2006)whichseekstofacil-itate changed, more realistic perspectives, and open up possibilities forthe person seeking assistance to position him or herself more helpfullyinrelationtotheissuesretold.Althougheachstorytellerwasengagedintheproductionoftheirowndigitalstory,theworkshopwasafacilitatedgroup process.The workshop was designed to be fun, highly participatory andallowed storytellers to work on their own material at their own paceand in their own way. Sessions were structured in one hour sessionswith fun energisers between these sessions.The workshop began with the facilitator introducing storytellers tothe concept of digital storytelling. They were then invited to write a ‘ narrative ’ orstorythattellsthemandothersabouttheirlife,bydrawingon 󿬁 rsthand,experientialknowledge.Inthe 󿬁 rstworkshop,storytellerswereinvitedtotellthestoryoftheirlife.Inthesecondworkshop,story-tellers  󿬁 rst identi 󿬁 ed  󿬁 lm topics based on key issues affecting adoles-cents with HIV. They then chose which topic they wanted to focus on.The narrative, when read, was limited to 3 – 4 min in order to focus thenarrativeonthestorytheywantedtotellandtocontrolthe 󿬁 lmproduc-tiontime.TheycouldwritetheirnarrativeinEnglish,ShonaorNdebele, 3 N. Willis et al. / Children and Youth Services Review xxx (2014) xxx –  xxx Please cite this article as: Willis, N., et al.,  “ My story ”— HIV positive adolescents tell their story through  󿬁 lm,  Children and Youth Services Review (2014), http://dx.doi.org/10.1016/j.childyouth.2014.03.029  two major indigenous languages.On the completion of the  󿬁 rst draft of their story, the facilitatorasked clarifying and extending questions, encouraging each story-teller to re 󿬂 ect on the effect of these experiences and to describehow they had responded to these events. This one-on-one processenabled storytellers to re-story their experiences with a far richernarrative than initially developed. The facilitator guided the story-teller through a more participatory, in-depth process than is oftenpossible in more traditional one-on-one counselling. Storytellersthenreadtheirnarrativestoeachotherandprovidedemotionalsup-port for one another when sharing painful memories. They celebrat-edeachother'ssuccesses andencouragedoneanother tosharethesein their  󿬁 lms. In this way, the workshop was both an individual andgroup therapeutic process.Oncestorytellersweresatis 󿬁 edthatthenarrativeprovidedatruere- 󿬂 ection of their story, they recorded their audio narrative in a studio.They then chose visual images to bring their story to life. Storytellerswere trained to take photographs and encouraged to use whicheverimage they believed would best convey their message, including oldandnewphotographs,documentsortheirownpaintingsanddrawings.Theywerethentrainedtodevelopastoryboardinwhichtheyarrangedtheir visual and audio narratives. Following iMovie training, they wereassisted to produce their own  󿬁 lm by assembling the audio and visualnarratives.On the completion of their  󿬁 lms, storytellers were asked if theywouldliketosharetheir 󿬁 lmwithotherpeopleintheirlives.Thisin-volvement of outside witnesses is considered an important step innarrativetherapyandthetherapeuticprocess(Payne,2006).Allpartic-ipants chose to show their digital stories to their caregiver. This wasdone in a group setting with all storytellers and caregivers together.Africaid counsellors were involved in order to assess the impact of thestorytelling process and provide individual counselling as required.Discussions were then held with the storytellers and caregiverstogether to support them following the production of their storyand to assist them with any issues arising. This included an explora-tionofboththestorytellers'andcaregivers'reactionstothe 󿬁 lmsanda discussion around how storytellers wanted to use their stories.  2.6. Data analysis In order to explore the therapeutic role of the digital storytellingprocess, qualitative data was analysed from various stages in theprocess: 1) the digital stories (transcripts), 2)  󿬁 eld notes from 2focus group discussions with the storytellers ( 󿬁 eld notes) and 3) 1focus group discussion with caregivers ( 󿬁 eld notes).The audio narrative and visualnarrative from thetwelve  󿬁 lmsweretranscribed.TranslationwasnotrequiredasallstorytellersoptedtouseEnglishintheir 󿬁 lms.Namesorotherpersonalidenti 󿬁 erswereremovedfrom transcripts before they were coded. Two researchers coded eachtranscript. Discrepancies were resolved by discussion. Codes weregroupedintocategories and emergingthemes werethen identi 󿬁 edfol-lowing the general principles of thematic analysis (Attride-Stirling,2001). Common themes amongst the differentdata sources were iden-ti 󿬁 ed and illustrated with quotes. Although transcripts for earlier ver-sions of the  󿬁 lm were available we only included the transcripts of the 󿬁 nished  󿬁 lm here.  2.7. Ethical considerations Written informed consent was obtained from all storytellers.Written parental/guardian consent was also obtained to ensurethat adolescents' participation would not incur dif  󿬁 culties at home.It was agreed that the storytelling process would be ceased forindividual participants experiencing distress. Storytellers also haddaily opportunities to provide support to one another.Storytellers were informed that the  󿬁 lms were their own propertyand would not be shared with anyone without the permission of the  󿬁 lm maker, particularly to prevent involuntary disclosure of thestoryteller'sHIVstatus.Filmmakerswereabletowithdrawtheirma-terial from the process if they wished. Storytellers were informedthat the audience for the  󿬁 lms was the storyteller themselves but if they wanted to share their  󿬁 lm with someone else, including a wideraudience for advocacy purposes, that was their choice and would bediscussed on the completion of their  󿬁 lms. 3. Results  3.1. The therapeutic role of digital storytelling  Inkeepingwiththenganoformat,allstorytellersnarratedajourneyof physical and emotional changes, focusing initially on childhoodsdominated by dif  󿬁 cult experiences before then describing how theirlives had changed over time.All storytellers chose to begin their stories by describing livesdominated by memories of sick parents, stigma, a lack of under-standing of what was happening to them and their own ill health.These experiences were common to all  󿬁 lms. The description of these events was conveyed through their voice narrative, often inshort, poetic phrases but also greatly enhanced through their choice of visual images to convey their experiences and emotions. Images includ-ed photographs from when they were young, when they were sick orfacing dif  󿬁 culties such as being unable to go to school. They usedwords and drawings to convey their experiences, such as the drawingof a  ‘ broken heart ’  or the words  “ stigma ”  and  “ discrimination ” .Storytellers all described a childhood characterised by a lack of control over events in their lives and an overwhelming feeling of being controlled by external factors.  “ This pandemic took charge of my life ”  ( Keith );  “ Sickness began to rule ”  ( Frank ).Several storytellers described feeling hopeless when they learntabout their diagnosis which was often disclosed after a prolongedperiod of illness. This was both frightening and disempowering; “ The walls of hope, love, life and everything good crumbles ”  ( Susan ). Mis-trustandsecrecywerecommonwithonegirldescribing “ Ifeltmyfather was hiding something so decided to my own research ”  ( Mazvita ). Story-tellers' voices were typically characterised by sadness.Many storytellers described not knowing the cause of their parents'death or the reason for their own ill health. Even when not explicitlystated, they had clearly recognised that they should not discuss certainissues which caused a considerable amount of distress as they wantedto know more.  “ Questions kept on ringing in my head ? ”  ( Keith ).  “ It  feelsterrible when someone blinds you so that you see nothing  ?  I needed clear answers why my mother died ”  ( Mazvita ).When narrating their experience of disclosure, they described feel-ing  “ Shocked by my status ” . They depicted anger and betrayal towardsfamily members in relationto the way they were infected or asa resultof not being told their HIV status earlier. These emotions were oftenlinked to a sense of blame.  “ I was very angry. He never told me what was happening  ”  (  Amanda );  “ I am the only child [in my family] affected … 4  N. Willis et al. / Children and Youth Services Review xxx (2014) xxx –  xxx Please cite this article as: Willis, N., et al.,  “ My story ”— HIV positive adolescents tell their story through  󿬁 lm,  Children and Youth Services Review (2014), http://dx.doi.org/10.1016/j.childyouth.2014.03.029  it is something that pains me a lot. I felt the great pain inside my heart  ” ( Lindiwe ).Storytellers described stigma and discrimination in their daily lives.One girl used a video image of her disappearing from the screen,symbolising her feeling of being insigni 󿬁 cant —“ Imagine how it feels tobe treated as if you are not human ”  ( Tendai ). She described a childhoodwhere she frequently encountered  “  people with lack of heart for other  people ” .They commonly described and illustrated their stories to show thechallenge associated with being physically different from their peers — for example being stunted or havingskin dis 󿬁 guration.As they becameolder,theirconcernsstartedtofocusondelayed puberty;  “ I hadstunted growth … even menstruation was delayed ”  ( Rudo ).Feelings of isolation and loneliness were commonly described;  “ My peers did not want to associate with me … share books together  ”  ( Tendai ); “  At that time I did not talk to anyone ”  ( Lindiwe ).The feelings narrated were not all negative. Many adolescents de-scribed the pain of losing loved ones, something they had not been en-couragedorabletotalkaboutinothersettings.Theydescribedmultiplelosses includingthedeath of their parents and siblings and a childhoodgrowing up without these people in their lives. They used their  󿬁 lmstore 󿬂 ect on the memories of these people, speaking with fondness andlove for their loved ones.  “ My father lit up my world. So when that manwas taken away from me I couldn't take it  ”  ( Susan ). Many incorporatedold photos that they had been unable to display previously.Fear and uncertainty for the future was commonly described; “ SometimesI would wonder when it would all end ” ( Susan ).Theirexperi-ences of family deathsand recurrentmessages that  “ HIV kills ”  leftthemworried and fearful for their future. Lack of information and answers,compoundedbystigmaanddiscrimination,resultedinpoorcon 󿬁 dence,lack of self-esteem or hope for the future.Adherence was described as a major challenge. Although they hadaccess to medication they had many fears around  “ How am I going toswallow these tablets for the rest of my life ? ”  (  Amanda ).Havingdescribed theearlier part of their lives, they wenton to nar-rate how their lives then changed. Different themes emerged aroundfactorswhichhadhelpedto “ makeourlives longer,strengthen ourbodiesand put smiles on our faces ”  ( Fr ank ).Themostsigni 󿬁 cantin 󿬂 uenceinthestorytellers'liveswastheemo-tional support they received. They described the way speci 󿬁 c individ-uals, clinics or organisations had been pivotal in providing supportwhichhadhelpedthemtofeellovedandcaredfor,incontrasttostigmaand discrimination.  “ My family gave me support, love and care. My sister occupied the role of counsellor, giving me information about HIV. My father's love for me was unconditional; he gave me con  󿬁 dence and lit upmy world ”  ( Susan ).This was commonly linked to a sense of acceptance. When describ-ing her arrival at the Africaid programme, one girl narrated  “ I foundwhat I call a family, friend, supporter and inspiration. What makes me crytears of joy is that I found a family with heart that never selects but takesme as I am despite my HIV status ”  ( Tendai ).Others described this acceptance in the context of dating, relation-ships and disclosure to partners;  “ He accepted me and I am happyabout it. He told me I love you for who you are ”  ( Rudo ).This is in sharp contrast to the earlier narrative in their  󿬁 lms inwhich they described being isolated and stigmatised.  “ I felt more at home, happy and accepted ”  (  Alan ).The importance of peer support was highlighted in all  󿬁 lms. Intro-duction to peers living with HIV was described as transforming andwasthepivotaroundwhichthemoodof thestorieschangedfrom neg-ative to positive. Peer support activities enabled them to share withothers with similar experiences and they no longer felt isolated. Onestoryteller explained  “ I do not have intentions to lose the true friendshipthat I have ”  ( Precious ).Incontrasttothebeginningoftheir 󿬁 lms,storytellersexplainedhowthey now have a sense of control and freedom in their lives and howthese have helped them to cope better;  “ I can now take control of mylife, I have kissed away the fear and frustration ”  ( Susan ).  “ You will never be able to pull me down, I can now walk alone for as many years ” ( Frank ). One storyteller focused his story around being a dancer,  “ Indance, I keep on two stepping and I will never stop ”  ( Keith ).One of the recurrent themes was the participation and active en-gagement as service providers. All storytellers had played an activerole as peer counsellors and they described how this had given them apurpose and helped to build their con 󿬁 dence.  “ My dream is to becomea nurse so that I can look after other HIV positive people ”  (  Amanda ).Thereisgrowingrecognitionoftheimportanceofchildparticipationfor its own sake (U.N. General Assembly, 1989) and for its therapeuticbene 󿬁 ts (Save the Children, 2010). The stories epitomised why this iscritical. Storytellers described how important their sense of ownershipof the Zvandiri programme was to them.  “  Zvandiri is led by childrenand adolescents with HIV  … .who participate at every level … .the youth get to experience what it is like to be at the forefront of a huge project. It iswe who facilitate ”  (  Alan ).Theydescribedtheroleofskillsacquisitionintheirlivesasbeingim-portant. “ Ihavedevelopedskillsincopingwithmysituation.Icannowlookaftermyself,takestepstoprotectmyself  ” (  Alan ); “ Icannowseetheoppor-tunities given to me ”  ( Nigel ).One of the most notable themes to emerge was the sense of in-creased con 󿬁 dence in the storytellers.  “ Through support, I feel con  󿬁 dent and able to make informed choices. I am now con  󿬁 dent, independent andmost of all ever smiling  ”  ( Tendai ). This wasevident in the writtennarra-tiveofthe 󿬁 lm,thetoneoftheirvoiceintheaudionarrativeandintheiruseofimagestoconveytheirmessages.Onestorytellerchosetouseherown recorded songs as the soundtrack for her  󿬁 lm.Having described the role of emotional support, acceptance, peersupport and participation in their life stories, key themes emerged inthe 󿬁 lms regarding the impact of this support.Participantscommonlydescribedafeelingofrenewedambitionandoptimismintheirlives; “ Mydream istohave a goodjob ” ( Brian ); “ I hopeto get married and have our own HIV negative children ”  ( Rudo ). To illus-trate her ambition, one girl chose to include a visual image of herdressed as a nurse in her HIV clinic.Similarly, this was re 󿬂 ected in the storytellers' description of theirdesireto live. Incontrast to theearlier feelings of hopelessness, suicidalideation and having no purpose, they then went on to describe a newdesire to live;  “ I now have the desire to live … hope for a brighter future ” (  Alan ).  “ I will achieve my goals because I have a positive mind ”  ( Lindiwe ). “ My life has been a rollercoaster  , ( but is now )  going from strength to goodhealth ”  ( Susan ). This was mirrored in the sense of acceptance runningthrough each  󿬁 lm;  “ Whatever you do, do it with heart and acceptance,being HIV positive is not the end of my life ”  ( Tendai );  “ The door opened,the light came in to my life ” ( Lindiwe ). These perspectives are in sharpcontrast to the wider social stories about growing up with HIV, such 5 N. Willis et al. / Children and Youth Services Review xxx (2014) xxx –  xxx Please cite this article as: Willis, N., et al.,  “ My story ”— HIV positive adolescents tell their story through  󿬁 lm,  Children and Youth Services Review (2014), http://dx.doi.org/10.1016/j.childyouth.2014.03.029
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