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

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