Effective Psychosocial Support for Adults and Children

Dear Partners 

This month’s e-Update is dedicated to providing your teams with the resources that will strengthen their ability to provide counseling based psycho-social support to both adults and children. We are all deeply aware that HIV infection affects all dimensions of a person’s life: physical, psychological, social and spiritual. When you consider that HIV infection, unlike other chronic illnesses, can often result in stigma and fear for those living with the infection, as well as for those caring for them; When you consider that knowledge of someone’s HIV-status can result in the loss of social inclusion, employment, housing or similar; It emerges as the only medical condition that uniquely demands ongoing, deliberate, engaging multi-dimensional and individually-oriented support to mitigate its psychosocial impact. 

Psychosocial support is a term that refers to a set of services or activities that address the ongoing psychological and social challenges for HIV-infected individuals, their partners, families and caregivers. The basis of of psycho-social support is counseling and uses principles in counseling to uncover, address and resolve the challenges in the different domains of a person’s life. 

To better understand how effective psycho-social support is provided Let us get back to the basics: Central to psycho-social support is counseling. Counselling is a structured conversation between two or more people that assists one of the participants to work through particular problems he or she faces, for example, grief, self-stigma or even disclosure. Counsellors encourage people to recognize and develop their own coping capacity, so they can deal more effectively with problems, versus being told what to do.  When counselling methods are applied within social support effectively, HIV positive individuals and their caregivers cope more effectively with each stage of the infection and enhances quality of life throughout their health management. 

Much emphasis is placed on counseling at the point of diagnosis however, little emphasis is placed on incorporating true counseling-based support as part of long-term psychosocial care packages that are responsive to the ever changing circumstances facing individuals navigating life with this chronic condition.  Programs therefore often lack the appropriate training, guidelines and skills to reinforce long-term support mechanisms which are rooted in counseling versus training/teaching and information dissemination. To help make the distinction even more clear consider the following counseling principles that are essential to client engagement: 

• Listen attentively to the client; give them time to say what they need and be patient. Help them express their feelings and emotions and show warmth and caring for the person. 
• Treat clients and their families with respect and be reliable and consistent. Accept people as they are and avoid moralistic judgments. 
• Try to avoid giving advice; rather let clients work through issues and make their own decisions with your help. 
• Help the person focus on issues where they can achieve some positive change, rather than being overwhelmed by the problems of HIV and AIDS. Help them identify others they can rely on and receive help from. 
• Do not pretend to have skills, knowledge or resources you do not have – know when (and where) to refer clients for more specialized help. 

If you take a moment to examine how psychosocial support is provided in many community programs, against these guidelines you can better evaluate if the foundation of your psychosocial support services is rooted in counseling principles or education. More often then not you will see that with adequate psychological support, PLWHA are more likely to be able to respond adequately to the stress of being infected and are less likely to develop mental health problems and adhere better to treatment programs, which ultimately impact their physical and social health. 

For both individuals and households, psychosocial support can assist people in making informed decisions, coping better with illness and dealing more effectively with discrimination. It empowers decision making and self-efficacy in a way that an instructional-relationship cannot. 

The selected resources below aim to provide guidance, for improved psycho-social support programs to adults, children and the elderly. An additional set of materials are provided to support institutional capacity development in the area of adult and pediatric disclosure. These represent a diverse range of materials including codes of conduct, manuals, research reviews and guidelines. It is recommended these resources are downloaded, adapted where needed and shared as part of internal organizational learning for staff, CHWs, peer-counselors or the like to provide guiderails on the counseling processes. 

1. Standards for Psychosocial Support for Adults Living with HIV/AIDS:

   This is a first of its kind document developed by the British Psychological Society British HIV Associations Medical Foundation for AIDS and Sexual Health. The standards represent current best practice and are intended to apply to all services providing psychological support (as defined above) for adults living with HIV. standards therefore focus on the promotion of mental health and wellbeing for all adults living with HIV, as well as the early detection of psychological difficulties and the provision of appropriate interventions for those who need them. They represent current good practice which we believe people living with HIV should expect from their care providers. Throughout the standards, the person living with HIV is placed at the center, whatever their level of need.
   To download, see the PDF attachment.

2. Ethical Code for the International Association of Marriage and Family Counseling:

   This document provides a professionally endorsed code of ethics for the field of counseling. Developed by the International Association for Marriage and Family Counselors, a regulatory and members association that aims to create standards and to support the development of professional counselors, this document provides a great platform for standardizing approaches and practices for ethical counseling services. In the absence of wide-spread national guidelines, this document provides a solid representation of standards of practice required by counselors to maintain ethical relationships and provide appropriate services to the diverse range of clients they may engage with. More specifically this document provides guidelines that ethically: 

• Frame the counseling relationship
• Reinforce confidentiality and privacy
• Define professional responsibility
• Support service evaluation, assessment and interpretation
• Guide supervision, training and teaching
• Approach how to resolve ethical issues that are raised. 
  
  Although this is framed as an international code of ethics, there may be areas where contextual adaptation may be required for culture or the legal framework in your country.
  To Download click this link.

3. Meeting the Psychosocial Needs of Children Living with HIV in Africa:

   PSS is especially critical for children, creating the foundation from which they can establish their identity and place in society, manage their care and live positively, cope with challenges, and plan for their future. The following document is a review of programs across the continent. It extracts best practices in critical services related to the psychological and social wellbeing of prenatally-infected children in Africa. These include the identification, testing, and counseling of children so that they are linked to appropriate support as early as possible, as well as on-going support to help children and their families manage disclosure, stigma, grief and bereavement processes.
   To Download click this link.

4. A Qualitative Review of Psychosocial Support Interventions for Young People Living with HIV:

   The Department of Child and Adolescent Health of WHO undertook, in collaboration with the Health and HIV departments of UNICEF in New York, a review of interventions for providing psychosocial support for young people living with HIV (YPLHIV). Drawing on information from key players and organizations around the world, the study investigated the following: what organizations are doing to provide psychosocial support for YPLHIV; the major problems faced by YPLHIV and the obstacles organizations must overcome to meet their needs; specific outcomes that organizations are trying to achieve; lessons learned in effective provision of psychosocial support for YPLHIV (what works and what does not); policy and program recommendations; and research questions that remain unanswered. This report provides recommendations and guidelines for how organizations around the world can improve psychosocial support services for YPLHIV as they transition to adulthood. 
   To download click this link or see attachment.

5. What Do We Really Mean by ‘HIV Care and Support’: Progress Towards a Comprehensive Definition: 

   The Care and Support Working Group is part of the UK Consortium for AIDS and International Development. The working group exists to: 

• Provide a clear and comprehensive definition of HIV Care and support
• Scope the breadth of issues captured within this definition of HIV care and support;
• Raise the profile of care and support within the Universal Access continuum;
• Ensure care and support is not left out of the advocacy agenda; and, where possible, present consensus policy and practice recommendations on care and support to multilateral institutions, donors, national governments and civil society. 
  
  This paper is a collaborative work between the members of working group and represents our agreed joint position on a comprehensive definition of care and support.
  To download click this link or see attachment.

6. Psycho-social Support For Older Carers:

   Most people expect their caring duties to ease off in later life. But around the world, millions of older people are caring for orphaned children and for family members living with AIDS-related illnesses. Older carers face specific challenges, but they are often overlooked by development programs. These guidelines, aimed at program managers, explain the issues facing older carers and set out ways to give them the emotional and social support they need to carry out their vital role.
   To Download click this link.

7. Guideline on HIV disclosure counseling for children up to 12 years of age:

   Disclosure of HIV status is an important part of the process of living with HIV, and is crucial to continuum of HIV care. Disclosure decisions are particularly complex when children are involved because of concern about children’s emotional and aptitudinal ability to understand and cope with the nature of the illness, stigma, family relations and concerns about social support. Parents and caregivers are often uncertain how to counsel about disclosure, and opportunities to provide HIV testing and care, and to help families start the discussion about living with HIV are often missed. 
   
   WHO has developed this guidance for healthcare workers on how to support children 12 years of age and younger, and their caregivers, on disclosure of HIV status. The guidance is intended as part of a comprehensive approach to the physical, emotional, cognitive and social well-being of a developing child following the child’s own diagnosis of HIV or that of a parent of close caregiver.
   To Download click this link.

8. Counseling Guidelines on Disclosure of HIV status (Adults/General):

   These guidelines developed by the South African AIDS Trust developed from the direct experience of people living with HIV and AIDS are to help those who may be called upon to counsel or advise people who are either thinking about disclosure or who are trying to cope with the consequences of involuntary disclosure.  By raising key issues and sharing practical hints, the guidelines are designed to promote informed choices about disclosing HIV status and improved coping strategies following disclosure. 
   To Download click this link.

9. Factsheet: Disclosing our HIV Status to Others:

   Talking about our HIV and disclosing our status to others is one of the most challenging things about living with HIV. Deciding who to tell can feel very daunting, especially when we are first diagnosed. There are lots of different people we might want to disclose to: a partner, family, friends, work colleagues and healthcare providers. This factsheet gives some general tips on how to go about this and some things to consider with particular audiences.
   To Download click this link.

10. Facilitating HIV Disclosure Across Diverse Settings: A Review:

    HIV status disclosure is central to debates about HIV because of its potential for HIV prevention and its links to privacy and confidentiality as human-rights issues. This journal review of the HIV-disclosure literature found that few people keep their status completely secret; disclosure tends to be iterative and to be higher in high-income countries; gender shapes disclosure motivations and reactions; involuntary disclosure and low levels of partner disclosure highlight the difficulties faced by health workers; the meaning and process of disclosure differ across settings; stigmatization increases fears of disclosure; and the ethical dilemmas resulting from competing values concerning confidentiality influence the extent to which disclosure can be facilitated. Results shared suggest that structural changes, including making more services available, could facilitate HIV disclosure as much as individual approaches and counseling do.
    To Download see the PDF attached.

More to come!