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Table 1 Summary of results from clients and caregivers related to experiences, beliefs and barriers to involvement.

From: Experiences of treatment decision making for young people diagnosed with depressive disorders: a qualitative study in primary care and specialist mental health settings

  Clients Caregivers
Experiences: Client involvement • Varied according to client, clinician and service
• Didn't always match preference
• Most clients experienced different types of involvement
• Less involved in certain settings (e.g. detoxification units, inpatient units)
• Satisfaction with level of involvement varied
• Usually encouraged involvement of their offspring
• Did so to promote engagement in service and personal development
Experiences: Caregiver involvement • Many clients did not have caregivers involved
• Clients who did not have caregivers involved described finding decision making challenging due to a lack of support
• Clients who did have caregivers involved described at least one negative experience each where caregiver involvement was detrimental to decision making
• Experiences relatively homogenous
• Felt involvement was usually limited to practical tasks
• At times felt removed from clinical encounters, including treatment decision making
• Caregivers asked for information about their child but not always given the information they wanted
• Satisfaction with level of involvement varied and was influenced by characteristics of the young person and of the caregiver themselves
• Many caregivers found confidentiality policies based on age problematic
Experiences: Clinician involvement • All clients wanted some clinician involvement
• Some clients wanted only specific clinicians involved (e.g. case manager but not doctor)
• All but one client wanted clinician involvement to be of a collaborative nature
• Most clients wanted to weigh up the potential risks and benefits of treatment options with clinicians
• Most caregivers wanted to trust clinicians as experts
• Most caregivers wanted to be trusted as those who knew the most about their children
• Caregivers reported either themselves or the clinician making the final decision
• Trust in clinicians was dependant on perceived quality of care
Experiences: Information • Provision of information varied across clients, clinicians, services, and also within clients across time
• Information received was lacking or poor
• Many clients sought information elsewhere
• Some clients felt reluctant or unable to ask for more information
• Information valued as important for decision-making
• Clients wanted honest information about treatment options and likely outcomes to facilitate realistic expectations
• Provision of information was poor
• Lack of information compounded feelings of exclusion and confusion
• Some caregivers received information via their child
• Some caregivers sought information elsewhere
Beliefs: Desire for involvement • Desire for involvement varied both within and across clients
• Most clients wanted a collaborative style
• Trust, age, severity of symptoms and levels of support influenced preference for involvement
• Clients distinguished between decision making process and making the final decision
• All caregivers wanted some involvement
• Degree of preferred involvement varied, including preference for who makes the final decision
Beliefs: Importance of involvement • Client involvement important for engagement process, adherence to treatment, safety, autonomy and empowerment
• Consideration of personal characteristics, values and preferences was important to clients
• Having the final say was perceived as a basic right
• Caregiver involvement important because of knowledge about offspring and continuity of care compared with limited time with clinicians
• Client involvement important but extent of preference for client involvement varied
Beliefs: Negative aspects of involvement • One client sited immaturity and another felt that young people were not qualified • One caregiver felt unable to be involved when experiencing her own mental distress
Beliefs: Improving the decision-making process • Suggestions influenced by experiences
• Advocates on inpatient unit
• Plan for therapy from the start
• Wanted to be 'taken seriously'
• Meaningful information that drew on existing personal knowledge
• Interactive fact sheets
• Information, particularly about mental disorders
Barriers to involvement • System level barriers e.g. lack of time in consultations
• Relationship barriers e.g. lack of communication or trust
• Personal barriers e.g. age
• Service barriers e.g. confidentiality policies
• Relationship barriers e.g. exclusion by clinicians and offspring
• Personal barriers e.g. own mental health issues