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Table 1 Summary of results from clinicians related to experiences, beliefs and barriers to involvement

From: Making decisions about treatment for young people diagnosed with depressive disorders: a qualitative study of clinicians’ experiences

Theme Findings
Approach to treatment decision making  
Decision-making model • Vast majority of clinicians employ a collaborative approach to decision-making processes either some, or all, of the time
  • Ultimate decision rests with the client, but clinicians have professional responsibilities
Who should weigh up the potential risks and benefits of different treatment options? • Clinicians present treatment options to clients and discuss the potential risks and benefits of treatment options
  • Most clinicians support a collaborative approach to considering potential risks and benefits of treatment options
  • Small number of clinicians felt that either they should do it themselves or that clients should do it with their support
  • Clinicians role in weighing up risks and benefits ranged from supportive to directive, and included provision of information as a key task
  • Some clinicians made a distinction about the decision-making process and who actually makes the decision
Client values and preferences • Values and preferences important part of treatment decision making, including cultural and religious values, and relevant individual characteristics
  • Clinicians have opinions about the merits of different treatment options and explain the rationale for their choice to clients, particularly when disagreements arise
  • Clinicians make some decisions before being discussed with clients
Asking explicitly about preference for involvement • None of the clinicians ask clients explicitly about their preferred level of involvement in treatment decision making
Exceptions to decision making approaches taken by clinicians • Four main circumstances leading to a more paternalistic style of treatment decision making: depression severity and associated decline in functioning; perceived risk levels (i.e. to risk to self or others); perceived client preference for involvement; age/developmental stage of the client
  • These situations involved a shift in dynamics rather than employing a strictly paternalistic approach
  • Several clinicians felt that the client should still have the final decision unless they were being treated involuntarily
  • Caregiver involvement necessary for younger clients
Reasons for involving clients • Therapeutic in and of itself
  • To facilitate engagement of the client
  • The “right thing to do”
  • Developmental stage/age
  • To help young people develop a sense of autonomy
  • “Higher success rate” with treatment
  • Affording clients a “sense of control”
  • Adherence and therefore longer lasting benefits of treatment
  • To promote future help seeking
Caregiver involvement • Optional and based on the preference of the client
  • Encouraged but not mandatory
  • Policy at some services to never insist on caregiver involvement
  • “Ideal” or “essential”; but only with client consent
  • More or less caregiver involvement based on age/maturity of client; depression severity and risk issues; capacity to make decisions
  • Some clients do not have caregivers
  • Usually involves practical assistance and provision of collateral information rather than sharing decision
  • Providing information to caregivers seen as important
  • Potential negative outcomes
Conceptualising involvement  
What constitutes true involvement? • “Joint understanding”
  • Engagement
  • Insight
  • Willingness to be there
  • Having an opinion; feeling comfortable to openly criticise experiences of treatment
  • Freedom for “mutual agreement and disagreement”
  • “Two way conversation”
  • “Equal conversation”
  • Respect for choices
  • Competency
  • Comprehension
  • Level of articulateness
Information provision  
General • Topics typically covered (e.g. depression, therapy, medication)
  • Information sourcing and provision (e.g. fact sheets, websites)
  • Reasons for varying the content or format of information (e.g. younger clients)
Describing potential risks and benefits of treatment options • Potential benefits of CBT: effectiveness in general and in terms of relapse prevention; that it can be tailored to the client
  • Potential risks of CBT: disengaging from therapy; poor connection with therapist; feeling worse before feeling better; gaining insight may cause distress
  • Potential benefits of medication: Likely to help faster than psychological therapy and might help to do therapy but would not “cure anything”; not a “magic bullet”; would not work straight away; evidence favours combination of CBT and medication
  • Potential risks of medication: important to discuss to avoid non-adherence, so clients could monitor seek treatment for side effects, and because it’s a clinician’s duty of care; different levels of information provided; increased risk of suicidality
Tailoring information • Information simplified for younger clients; those with lower levels of comprehension/literacy skills or cognitive impairment
  • Information provision varied according to clinician
Information formats • Information mostly conveyed orally
  • Some clinicians felt that written information was useful; others did not; some felt web based tools helped engage young people
  • Psychologists assumed psychiatrists used fact sheets; psychiatrists did not report consistent use of fact sheets
Negative aspects of client involvement • Few negative aspects reported
  • If client decided not to engage in, or disengage from, treatment; if a client did not comprehend/process information sufficient to make a decision; if the family does not support the young person’s decision and this causes conflict or stress; potential burden
Disagreements  
Disagreements with clients • Some clinicians reported no disagreements; others reported minor disagreements (e.g. “little bumps”); others reported more significant disagreements (e.g. non-attendance)
  • Responses to disagreements included “actively exploring” reasons and/or unresolved questions; presentation and/or representation of information and/or clinician rationale
  • Ultimately up to client
Disagreements with caregivers • Majority involved caregivers either wanting, not wanting, or not being told about medication prescribed to clients
  • Responses to disagreements included involving caregivers earlier in the process; further exploring and understanding the perspective of the caregiver; and restating the rationale or justification for their position
Barriers and facilitators to involving clients and caregivers in treatment decision making  
Client and caregiver level barriers • Depression severity; risk to self and/or others; non-attendance; poor engagement; age and/or capacity; stigma; perceptions of paternalism and coerciveness, and experiences of not being involved; concerns about confidentiality
Clinician level barriers • Reluctance to talk about sexual side effects; disagreements between professionals; style and approach of individual clinicians; disorganisation; underestimation of clients’ ability to comprehend information; failure to share information
Service level barriers • Time limitations, including wait lists and high case loads; decisions already being made before clinician sees client (e.g. treatment initiated by another clinician before seeing client); limited treatment options; lack of available services; lack of readily available resources (e.g. fact sheets)
Broader level barriers • Lack of evidence in the area; restriction of government funding to seeing caregivers
Facilitators • Adequate time; culture of the team; treating voluntary clients; having referral options; professional culture; general shift in healthcare culture towards collaborative approaches/informed clients
How to improve treatment decision making • Better information resources (e.g. fact sheets) that are up-to-date, relevant to young people, able to be given to caregivers, readily available, balanced, not overwhelming, available on the Internet and interactive; giving structure to existing conversations (e.g. about treatment); time to think about decisions; being clear about limitations of the service; development of guidelines around involvement and capacity for involvement; training for clinicians; more time