Acknowledge Dr. Tapfuma Murove New/current trends in the response to HIV in Africa: Focus on OVC and adolescents The role of families in dealing with disclosure ICASA, 6th December 2011 By Noreen M. Huni Acknowledge Dr. Tapfuma Murove

Presentation Outline Family defined. Why disclosure? When disclosure happens... Significant questions. Role of family. Policy and programming implications.

Who Are we? The Regional Psychosocial Support Initiative (REPSSI) is a non-profit regional organization. REPSSI provides expert assistance on emotional and social (psychosocial) support for children and youth living with the devastating effects of poverty, conflict, HIV and AIDS. We believe all children have the right to love, care and protection. Works in East & Southern Africa.

DEFINE FAMILY Family takes different forms. It’s about human relations. “a social network of biologically related members and socially (chosen) relationships” Primary unit of support for everybody. Care, love, protection, social and emotional support on a daily basis. Unit for human survival. Family support recognised in national treatment guidelines Family support at different levels Individual level Community level??

WHY DISCLOSURE & HOW? Dis-close : making something known, being open about status. Close: my own secret (however, usually being gossiped about) Is a personal decision (not true for children). A positive relationship between disclosure and health outcomes. Lack of adequate support leads to negative health & social outcomes Stigma and discrimination A process and not an event Gender based violence has negative effects/impact - hinders disclosure.

when Disclosure happens... Facilitate access to available services and support – getting what one needs to support their health & social outcomes. May reduce stress, protecting a “secret” takes energy. Provides entry point for support from others should one need any. May help improve one’s self-image through self-advocacy and self- confidence. It can lead to exclusion, being treated differently from others, being viewed differently, can bring up conflicting feelings about self- image.

Should i, should i not? Should I disclose? If I decide to disclose, who is an appropriate person to tell? When should I disclose? How much should I disclose? What should I disclose? Why should I disclose? How would those who know treat me?

Disclosing Challenges An HIV+ve diagnosis results in emotional challenges, depression, anxiety, fear, blame, shame and at times suicidal tendencies. Disclosure remains emotionally charged - at all ages and across gender. Response to self, perceptions, response by the social environment, e.g. blame, immoral behaviour, stigma and discrimination. Fears: - economic vulnerability, gender based violence, fear e.g. of pregnancy outcomes, fear of unsolicited disclosure from e.g. infant feeding methods.

Disclosing challenges Challenges faced by families in dealing with disclosure Emotional burden Social burden; stigma, discrimination, shame & blame Not sure what to do and how Parents find it difficult to disclose the child’s HIV status Difficult when dealing with adolescents Is a critical life decisions need to be made. May need family involvement.

Why family in dealing with disclosure? “Everyone needs a shoulder to lean on.” Why family in dealing with disclosure?

ROLE OF FAMILY - Support the disclosure journey Pre and post disclosure, ongoing support is needed.

ROLE OF FAMILY - Support the disclosure journey Family should be the safe space for disclosure. Source of care, support & protection. Source of emotional support Has a critical role in terms of PSS/wellbeing of its members Should support individuals to deal with challenges related to post disclosure: illness, pain and discomfort, grief due to loss of loved ones, rejection and stigma, isolation and abandonment by friends Can help foster the individual’s active participation and hope Maintain positive conversations, interactions and communication within families.

ROLE OF FAMILY - Support the disclosure journey Safe, supportive disclosing space - being the ‘safe container’ Unconditional love with zero stigma, zero discrimination Take time to understand disclosure related benefits & challenges Provide physical & material support Discuss fears, provide information, answer questions, truthfully & refer where necessary. Help one recognize & think through the advantages & disadvantages of disclosure in a particular setting Provide physical & material support Can help with understanding their responsibilities & rights. Uphold the rights of the infected individual

Policy & PROGRAMMATIC IMPLICATIONS Disclosure is not an event but a process – provide the appropriate support for the service delivery processes to provide ongoing support for disclosure. Public Health Education that promotes disclosure and family involvement in facilitating disclosure. Stigma reduction education needed. Put money where it matters most! Mental health matters most! Community/family interventions should continue to address stigma & discrimination.

Policy & PROGRAMMATIC IMPLICATIONS: A skills ENHANCING MODEL for community care workers Accredited learning programme. The University of Kwa-Zulu Natal & the African Centre for Childhood support delivery of programme. Personal & Professional Development Human Rights Based Approaches & Child Protection Child and Youth Development Care and Support of Children at Risk Integrated Development in Communities Service Learning Project 6 Modules: REPSSI and UNICEF developed the learning modules Supported Situated Distance Learning Certificate Course in Community Based Work with Vulnerable Children and Youth© “The programme changed my perception and understanding about children’s work! ...it is a profession with legal and ethical repercussions. There are theories and principles to follow which make it systematic hence it’s a profession” Certificate participant, Tanzania. 4 workshops for each module designed to: focus students on key trends, theories and approaches share students’ experiences in relation to new concepts in study materials Students complete 2 assessed assignments for each module on: Understanding of new theories that may challenge old understanding Capacity to reflect upon experience and incorporate new theories into practice Recognition and value of experience working with children, youth and communities. “Psychosocial support facilitates the social functioning of individuals, families, groups and communities” Graduate from Zambia 2010.

Policy & PROGRAMMATIC IMPLICATIONS: Families at the centre Family based approaches to HIV prevention, care & and support Psychosocial support for individuals, families & service providers Programmes should link clinic/centre based support to family support Community conversations on reducing stigma & discrimination Support the family as the primary carer. Creating secure significant ‘spaces’ for safe disclosure Family Based Care and Support Reduces stress and depression Increased services uptake and adherence to treatment Forster male involvement in addressing gender based violence Policies should not criminalise HIV positive individuals

“A burden shared is a burden lessened!” Families can provide an enabling environment, be a safe “container” for disclosure, and be the unit for hope and encouragement, loving & providing. Thank you.

More about REPSSI? Visit www.repssi.org Put this in a chart form.

How do we “do” psychosocial support? We develop strategic partnerships with NGOs, development partners and governments. We: train partner NGOs to provide social and emotional services develop tools and approaches - producing publications, manuals Run a situated, support distance-learning Certificate for community workers