Family and Youth Participation in Clinical Decision-Making

Approved by Council, October, 2009

Families and youth, as developmentally appropriate, must have a primary decision-making role in their treatments. The Institute of Medicine indicates that health care system redesign needs to involve "care customized according to patient needs and values," with "the patient (as) the source of control" (1). The promotion of family participation and empowerment is referred to as "family-driven care," with the family recognized as an equal partner with mental health and other human service professionals. Taking into account the need for active youth participation as well, care should be "family-driven and youth-guided." The concept of family-driven, youth-guided care is further endorsed in the report of the President's New Freedom Commission (2). There is evidence that outcomes improve when family and youth participate actively in treatment (3) (4). Family and youth engagement and subsequent commitment to treatment are heightened when they have leadership roles in clinical decision-making.

Families, youth and professionals have different sets of knowledge, experience and beliefs. All parties involved thus bring their unique expertise to the treatment team, without which the clinical decision-making process would be less productive. Family perspective is based on a family's experience with their child and an understanding of their child and family's strengths, needs, community, and culture. Youth perspective is based on the youth's lived experience and priorities. Professional perspective is based on training, cumulative clinical experience, and the ability to listen carefully and respectfully to others. Mutual respect for each perspective promotes decision-making in the best interest of the child.

Family and youth involvement is essential at each phase of the treatment process, including assessment, treatment planning, implementation, monitoring, and outcome evaluation. Family and youth partnership also needs to inform decision making at the policy and systems level. Family priorities and resources must be identified and should drive care. Throughout the treatment process families and youth must:

  • have the right to be involved in making decisions regarding providers and others involved in the treatment team;
  • be encouraged to express preferences, needs, priorities, and disagreements;
  • collaborate actively in treatment plan development and in identifying desired goals and outcomes;
  • be given the best knowledge and information to make decisions;
  • make joint decisions with their treatment team; and
  • participate actively in monitoring treatment outcomes and modifying treatment.

Child psychiatrists should always work towards consensus among all parties in the clinical decision process. However, under extreme situations, legal mandates or safety concerns may need to take precedent.

Working together, family, youth, and professionals can collaborate effectively in support of individualized, strengths-based, culturally competent treatment.

  1. Institute of Medicine (2001): Crossing the Quality Chasm: A New Health System for the 21st Century.
  2. New Freedom Commission on Mental Health. Achieving the promise: transforming mental health care in America. Final Report. Rockville (MD): DHHS: 2003. Pub. No. SMA-03-3832
  3. Morrissey-Kane, E. & Prinz, R. (1999): Engagement in child and adolescent treatment: The role of parental cognitions. Clinical Child and Family Review, 2, 183-198.
  4. Wehmeyer, M. & Palmer, S., (2003): Adult outcomes for students with cognitive disabilities three years after high school: The impact of self-determination. Education and Training in Developmental Disabilities, 38 (2), 131-144).