GRIEVING MANY LOSSES: ADAPTING BEREAVEMENT SUPPORT INTERVENTIONS TO THE REALITIES OF YOUNG PEOPLE LIVING WITH HIV PSS Forum, September 2015, Zimbabwe Carol Wogrin, Nicola Willis, Getrude Ncube, Lisa Langhaug

Children (0-14) living with HIV (2011) 0 – 20, ,001 – 460,000 20,001 – 170, ,001 – 230,000 Source: UNAIDS estimates, 2011 and 2012 Estimated 3.2 Million young people living with HIV globally >90% in sub-Saharan Africa Slide courtesy of A. Gieselman, OGAC and B. Ryan Phelps, USAID 2.8% children 15 years or less living with HIV in Zimbabwe

3  In 2009 – 2010, REPSSI collaborated with Swiss Academy for Development to rigorously evaluate an intervention mainstreaming PSS into an economic strengthening programme  960 young people at the start of the study Interviewed five times between 2009 and 2010 LEARNING TO DATE 722 completed Round 5 (aged years) 376 of whom were orphans (46.3% female, 44.1% orphaned by AIDS) 346 had lost parent(s) 2 or more years before 310 completed all questions used in the analysis

4  Expanded Grief Inventory (Layne, 2001, Brown 2005)  Caregiver Attachment (West et al, 1998)  Within Household Discrimination (Cluver et al, 2007)  Daily Stress (constructed with the study  Multidimensional Peer-Victimization (Mynard & Joseph, 2000)  Children’s Depression Inventory (short version) (Kovacs, 2003) MEASURED CHILDHOOD TRAUMATIC GRIEF

5  30.2% of orphans who had lost their parents more than two years ago showed clinically relevant levels of childhood traumatic grief.  Double orphans reported significantly higher levels of grief than single orphans (r=0.12).  no differences in gender.  Orphans with higher levels of grief also showed higher levels of depression (r = 0.29) and suicidal thoughts (τ =0.11) than orphans with lower levels of grief. RESULTS THAT LED TO CURRENT WORK

6  Current research emphasizes lasting implications when young people are not properly supported to process their grief following close family deaths. lower self-esteem, increased psychological and behavioral problems  Early disruptions in primary relationships can also lead to difficulty forming close relationships later in life  Africaid Zvandiri approached REPSSI to collaborate in the development of an intervention to assist young people to process their grief NGO in Zimbabwe – central tenet is to support young people living with HIV A REPSSI partner  Even in well supported groups, YPLHIV don’t discuss this grief MORE LEARNING Mavhu, et al. PLoSONE 8)7): e70254

Zvandiri surveyed 141 of its participants years Mavhu, et al. PLoSONE 8)7): e70254

8  Existing interventions use Western models Geared towards a single primary loss  However, in sub-Saharan Africa YPLWHIV experience multiple losses - Multiple deaths - Household mobility - Separation from siblings - Loss of belongings - Disruption of school DEVELOPING THE INTERVENTION

9  Used formative research to adapt topics and activities to address the multiple losses woven through their lives.  10 young people Community Advisory Treatment Supporters (CATS) from Zvandiri Aged Had experienced death of at least one parent Had also experienced death of others close to them Worked through 8 sessions with grief consultant DEVELOPING THE INTERVENTION

FORMATIVE RESEARCH SESSION CONTENT Loss Timelines Guided Safe Place Imagery Coping Strategies Emotional Body Mapping

LOSS TIMELINES

12  BEFORE these sessions realized they Had limited experience & ability to focus on their losses Felt like they lacked control over, and were confused by feelings Felt shame over the connections they continued to feel towards the deceased Felt isolated in their experiences and a reticence to let others know, believing their feelings were unusual KEY THEMES THAT EMERGED FROM THE SESSIONS  AFTER the sessions, realized they Felt relief in learning of shared experiences Has an increased ability to link feelings with experiences and to employ coping strategies Recognized that ongoing connections are normal and often comforting Several spontaneously reported decreased anger towards parents

13 Less focus on the before and after - because loss is too sequential Stress the multiple losses - Circle of Support Less split between primary and secondary losses - Woven into the main conversation. More focus on building from general feelings to their own specific feelings - Language of feelings is less familiar. - E.g. start with Feelings Charades and then move to Mody mapping Less focus on arts and crafts - No access to materials - Don’t have anywhere to put them at home, no privacy Involve movement and imagery that they can ‘carry’ with them - Movement: Circle of support - Imagery: Backpack where you pick someone out of your backpack to focus on ADAPTATIONS

14  Formative research highlights importance of contextualizing existing high quality interventions to complex realities of many young people living with HIV in East and Southern Africa  6 session intervention has now been developed Delivered by trained peer educators (CATS) 2 sessions for caregivers  Will be evaluated using a waitlisted study design 200 young people living with HIV attending existing Zvandiri support groups and their 200 caregivers CONCLUSIONS

15  Administered during the Zvandiri Support Group Meetings Held on the first Saturday of each month BASELINE SURVEY- LOGISTICS 10 groups deliver programme now 10 groups deliver programme later 5 groups selected from 9 at random AUGUSTSEPTEMBER

16 THANK YOU