A new study, published in the journal of European Child and Adolescent Psychiatry, explores what facilitates shared decision making for youth and parents in mental health care and what gets in the way. The researchers, led by Daniel Hayes, from University College London, identified fifteen barriers to and facilitators of shared decision making for youth and their parents that may be useful to apply in clinical settings. The results suggest that clinicians can work toward inclusion by offering accessible and jargon-free communication to youth and their parents.
“A common theme identified across many of the interviews for both the parents and young people was that being involved in decisions would result in a treatment plan that was right for them. They viewed their difficulties as unique and felt that to gain effective treatment, these factors needed to be considered,” the researchers write.
“In addition, involving young people in decisions also meant that ‘treatment could be changed if needed.’ Positive ripple effects stemming from this included more ‘buy-in’ from parents, as well as benefits to the young person’s ‘health and wellbeing.’”
Emphasis on shared decision-making (SDM) has increased as a growing understanding of its benefits in clinical practice has been found in research. When young people and their parents are involved in the therapeutic process, they report feeling empowered and end up receiving treatments more tailored to their needs.
While involvement by any service user in clinical care is essential, the current article focuses on youth with internalizing difficulties, a population especially at risk for low self-advocacy. Internalizing refers to the process of turning negative feelings inward, perhaps withdrawing when feeling sad or anxious. Externalizing refers to the process of turning feelings outward toward the environment. For example, when a child feels nervous in class and then gets out of their seat or causes a disruption.
Despite the clear benefits of involving young people in their own treatment, a limited number of studies have explored what factors can be helpful to facilitate SDM for youth. In addition, most research to date has focused on SDM interventions for those with externalizing difficulties.
The current study aimed to explore barriers and facilitating factors through direct input from youth and their parents. In total, nine adolescents between the ages of 12-18 with identified internalizing difficulties, along with their parents, were interviewed at two different outpatient therapy sites in London. Structured interviews were conducted with youth experiencing internalizing difficulties and their parents to identify factors that help and harm this process.
A Theoretical Domains Framework (TDF) was used to structure the nineteen interviews with participants. The framework contains “14 different theoretical domains which are posited to affect an individual’s behavior. These 14 domains can further be split into three overarching categories: capability, opportunity, and motivation.” The researchers explain this as a strength of the study, as it takes a systemic theory-driven approach rather than simply asking individuals about the barriers and facilitators of SDM.
Following the nineteen structured interviews, recordings were transcribed, coded, and analyzed using thematic analysis. Multiple researchers worked on each component to ensure strong inter-rated reliability.
One of the areas highlighted by authors as a factor for facilitating SDM was knowledge. Specifically, young people did not know that they were allowed to be involved in the decision-making process. For example., one young person’s responded: “I didn’t…[know]…they just make decisions for me.”
Parents, on the other hand, were aware that they were allowed to be a part of the decision-making process but were unclear of their specific role in the process. Participants also highlighted the clinician’s communication skills as playing a vital role in the SDM process.
One participant responded:
“It’s almost shoving the theory and science of it down your throat, isn’t it… they’ve been trained all their lives in clinical theory and different ways to deal with people, but nobody’s ever told them or taught them how to deal with people on a social level.”
“Alongside the need for clarity of communication, interviewees described the excessive use of jargon or technical language by clinicians which they felt was a barrier to involvement,” the researchers write. “Ways in which the clinician could demonstrate effective communication included the use of iterative questions, the removal of jargon from speech, and the omission of complicated medical information.”
Overall, eight domains were identified as either helping or harming the SDM process:
- Knowledge: Different levels of awareness regarding involvement in decision-making.
- Skills: Clinician listening skills inhibiting or facilitating SDM and Clinician communication skills inhibiting or promoting SDM.
- Memory, Attention, and Decision-Making Process: Forgetting to ask questions or remember what was agreed.
- Environmental contexts and resources: A lack of option when it comes to treatment, staff shortages inhibiting SDM, facilities not conducive to SDM, and a lack of understandable resources.
- Social Influences: Parents’ support of young people’s interests in SDM.
- Beliefs About Consequences: Shared decision-making empowers young people; Shared decision-making results in better treatment; Shared decision-making can result in the wrong decision.
- Beliefs About Capabilities: Feeling capable of SDM. A lack of capacity inhibits SDM.
- Emotions: Enhanced emotional states inhibit SDM.
The current study supports the movement toward increased service user involvement in care. While more studies are required to understand further barriers that clients may feel toward participating in decision making, clinicians can learn from available research and make appropriate adjustments to improve the SDM process.
“This study highlights that young people and parents want resources which are simple and understandable. Without such information, the young people and parents described struggling to be involved in decision-making as they could not differentiate between options.”
Hayes, D., Edbrooke-Childs, J., Town, R., Wolpert, M., & Midgley, N. (2019). Barriers and facilitators to shared decision making in child and youth mental health: clinician perspectives using the Theoretical Domains Framework. European child & adolescent psychiatry, 28(5), 655-666. (Link)