GRIEF AMONG PARENTALLY BEREAVED ADOLESCENT GIRLS IN SOUTH AFRICA: ADVERSITY AND RESILIENCE REPSSI PSYCHOSOCIAL FORUM SEPTEMBER, 2015 Tonya R. Thurman, MPH, PhD Associate Professor, Tulane University Director, Highly Vulnerable Children Research Center Country Director, Tulane International, LLC South Africa

Orphans and Bereavement  1 in 5 children in South Africa have lost a parent  Evidence is lacking about:  Grief reactions  Effective mental health interventions “Future interventions might focus on provision for mental health support for children around grief and loss and providing systematic tools and measurement to improve the evidence base.” - Sherr & Mueller. (2008). Where is the evidence base? Mental health issues surrounding bereavement and HIV in children.

Our Study: Coping with Loss  Baseline data from a Randomized Control Trial evaluating Abangane (Friends) Grief Groups for adolescent girls in Free State South Africa  School-based 9 th grade girls reporting loss and interest in participating in a related support group  From 11 schools in three areas: two rural, one urban  Data collected January-March 2015  Follow-up data in November 2015

Our Study: Coping with Loss  Ethical approval obtained from University of Free State in RSA and Tulane University in USA  All participants provided with a collection of stories from Africa about dealing with loss  Cognitive interviews conducted to select & adapt grief measures  Descriptive analysis of experiences and multivariate models to examine predictors of complicated grief, intrusive thoughts and personal growth By Heather Ferris and Corianna Heise

Adolescent Girls: Baseline Sample Characteristics (n = 416) Age range: years (12-16: 93%, 17-18: 7%) Mean: % were single orphans and 12% were double orphans 30% were maternal orphans and 33% were paternal orphans 50% cared for by a biological parent 23% cared for by a grandparent 19% live with an HIV positive caregiver

Adolescent Girls’ Experiences of Loss Circumstances of loss 44% experienced more than one loss (range 2-10, average = 2) 44% reported parent as loss that affected them the most o 55% cited her mother o 45% cited her father 26% reported grandparent as loss that affected them the most Average of 4.5 years since ‘most affected loss’ o Parentally Bereaved: 6.0 years o Non-Parentally Bereaved: 3.4 years

Adverse Grief Reactions

Complicated Grief of Parentally Bereaved Adolescent Girls Inventory of Complicated Grief (at least once per day) 50% miss loved one 47% could not believe loved one had passed 45% shocked at passing 27% felt lonely over passing 30% saw the world differently because of passing 42% cannot accept that loved one passed 6 items, Alpha=0.90

Complicated Grief among Parentally Bereaved by Caregiver Risk Factor (%)

Intrusive Thoughts of Parentally Bereaved Adolescent Girls Intrusive Thoughts (at least once per day) 31% thought about the death of the deceased 25% had thoughts about the deceased even when they didn’t want to 17% could not do regular things because they were thinking about the deceased 14% had nightmares about the deceased 39% thought things were better before the deceased passed 9 items, Alpha=0.89

Risk Factors for Intrusive Thoughts among Parentally Bereaved  Higher IGTS scores were associated with:  More recent loss  Increased levels of grief among caregivers  Poorer caregiver-adolescent relationship Scored higher on a scale of negative caregiver-adolescent connection Higher levels of perceived caregiving burden by the caregiver  Living with a chronically ill caregiver

Risk vs. Resilience  Research often focuses on pathways to risk, rather than the social, psychological pathways to improved mental health, resilience and coping  Two reviews on mental health of HIV-affected children and resilience concluded that rigorous research is lacking (Skovdal 2012; Betancourt 2013) A continued focus on the pathology of HIV-affected children may influence how society and communities see, and describe, their problems and impact on how they seek support and expect recovery. Skovdal 2013

Resilience among Parentally Bereaved Adolescent Girls: Personal Growth  Hogan Grief Reaction Checklist used to measure Personal Growth due to the death of a loved one (Alpha=0.82)  It includes 11 questions about how the death changed the adolescent’s  Empathy: You are more aware of others feelings (64%)  Treatment of other people: You try to be kinder to other people (73%)  Growth: You feel as though you are a better person (60%) (% answering mostly or completely true)

Factors predicting Resilience among Parentally Bereaved Adolescent Girls  Higher personal growth was associated with:  Better positive caregiver-adolescent connection  History of bereavement support Received help for their bereavement through confiding in another person, talking with other people who have experienced a loss, and talking about the loss with family members  Number of years since death was not significant, nor were caregiver grief, burden, or illness  Personal growth was not correlated with adverse grief– they are separate issues

Program Implications  Psychosocial support has the potential to help promote resilience among parentally bereaved girls  More is needed to address adverse grief  Resilience is still possible among adolescents with adverse grief reactions and challenging circumstances  Caregiver focused efforts could further improve children’s grief outcomes  Addressing caregiver-adolescent relationship has the potential to positively influence both grief and resilience  Caregiver physical and emotional wellbeing are important factors associated with children’s adverse grief responses

Acknowledgements Tulane Contributors - Brian Luckett - Alex Spyrelis - Tory Taylor Funding Support PEPFAR USAID Southern Africa - Anita Sampson Most importantly we appreciate the adolescents and caregivers who shared intimate details of their lives to aid our understanding of their circumstances. We hope they and other families facing bereavement are the ultimate beneficiaries of these and similar research efforts. Program Partners Child Welfare Bloemfontein & Childline Free State - Emma Francis - Team of wonderful social workers Khululeka Grief Support Program - Deborah Diedericks Research Partner: Epi Centre

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