Children’s Consent Framework: Policy and Practice for Maturity-Aligned Engagement of Children in Decisions about HIV-Related Medical and Social Services and Management of Confidential Information

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17/10/2018 12:00 am

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This framework proposes standardized policies and practices to help providers, caregivers, and children navigate the individual- and situation-specific decisions as to who provides consent for HIV medical and social services or sharing of confidential HIV data. The framework is built on the core principle that consent is aligned with decision-making capacity, including cognitive and social capacity as well as the ability to act in the best interest of the child. Practice support tools to assess individual capacity and policy language are included in the framework.

The purpose of this framework is to provide clear and consistent policy and practice to support the engagement of children and their proxies in making informed decisions about HIV-related prevention, testing, care,
social support, and treatment, as well as management of confidential HIV data. Clinical and social service providers recognize that, in many settings, children—especially those who are vulnerable and marginalized—are at high risk for HIV and poor treatment outcomes.

However, as explained in World Health Organization guidance (WHO, 2013b), the design and implementation of many policies and guidelines for HIV prevention, testing, treatment, and care, as well as management of confidential HIV data, do not adequately address the unique needs of children for a number of reasons, such as:

  • Lack of training, tools, and staffing
  • Medical, cultural, social, and moral complexities related to children
  • Compounded needs of HIV during childhood and adolescence
  • Stigma and bias related to the role of children and the behaviors that put them at risk for HIV
  • Lack of clarity and conflicting laws regarding consent
  • Inconsistent guidelines and practices related to:
    • Assessing child and/or caregiver
      capacity to give or withhold consent
    • Documenting the need for
      supportive proxies to help children
      navigate consent decisions

This framework focuses on settings and issues specific to HIV-related prevention, testing, care, social support, and treatment for children, as well as management of confidential HIV data for children. While concepts regarding informed consent and confidentiality have broad application and should be harmonized across medical
and social services for children, HIV presents critical issues involving stigma and discrimination, the potential for ongoing risk of transmission and need for identification of partners, and living with a chronic disease
throughout the developmental stages of childhood and adolescence. Additionally, concepts of decisional capacity have broad application to both children and adults.

The audience for this framework includes individuals involved in program design, implementation, and oversight. In addition, provider and community advocates will find this framework useful to identify and improve
policies and protocols at clinical and national levels. It is not the intent of the framework to be definitive or prescriptive, but rather to provide a conceptual structure to help address these complex issues and tools that
support and acknowledge the authority, expertise, judgment, and bias that health and social providers bring to the provider/ child relationship. For providers, the intent is to lower professional and legal risks, and for children, the intent is to reduce barriers to access and to improve consent and confidentiality practices, as well as health outcomes (Appelbaum, 2007; WHO, 2013b).

The framework is built on the fundamental concept that cognitive and emotional capacity determines who gives consent for children. Within this framework is information on how to assess decisional capacity of children to provide consent for themselves, as well as tools to guide an assessment. In the absence of a supportive parent/
guardian, the concept of a supportive proxy is discussed. This concept expands beyond the biological and/or legal relationship to identify and assess sources of support in instances where a parent/guardian are not present or
able to provide beneficial support. Tools to identify and assess a supportive proxy are also provided later in the framework. As illustrated in Figure 1, once the mechanism is identified by which consent will be provided
or withheld—either through the child or a supportive proxy—providers access existing operational protocols to seek and document informed consent. Likewise, once informed consent is obtained, existing clinical, social
work, or confidential HIV data management protocols should be implemented. Assessing decisional capacity supports providers to access mature minor clauses and/or seek supportive proxies depending on the capacity
of the child and local law.

Corporate Author: USAID, PEPFAR and Health Policy Plus


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