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