IMPLEMENTING A MODEL OF ATTRIBUTE IDENTIFICATION USING CONTINUOUS STAKEHOLDER ENGAGEMENT TO PRIORITIZE TREATMENT DECISIONS FOR YOUTH WITH SERIOUS MENTAL AND COGNITIVE IMPAIRMENT

Purpose: The goal of this research was to implement a systematic process that involves continuous stakeholder engagement for identifying attributes that are most important to caregivers’ treatment decisions for youth with serious mental and cognitive impairment.

Method: Eligible participants (n=48), recruited from community support groups, had a child aged 26 or younger diagnosed with a co-existing mental health condition and cognitive impairment.  Data collected iteratively from in-depth interviews and focus groups was used in a six-step approach for attribute identification: 1) six individual in-depth interviews, eliciting experiences in the care management of their child, were transcribed and coded into thematic concepts related to treatment decisions; 2) six focus groups involving 42 participants assessed concept relevance and importance, which was validated by two key stakeholders; 3) the most important attributes were categorized as actionable treatment decisions or a desired outcome; 4) caregiver-researcher-key stakeholder agreement in matching concept labels with statements determined consensus in concept definition; 5) focus group participants described treatment scenarios, linked to co-occurring concepts, which were potential competing treatment alternatives; 6) attribute levels emerged from a content analysis of transcribed interviews to reflect caregivers’ range of experiences balancing treatment decisions and desired outcomes. Key stakeholders ensured attribute interpretability at each step. Data were analyzed following the principles of the constant comparative method.

Result: Caregivers were the child’s mother (73%), white (77%), married (69%), and on average 48 years old. The children were on average 14 years old, 44% had an intellectual disability, 25% had autism and more than half had anxiety or attention-deficit/hyperactivity disorder (ADHD). All 15 concepts identified from the in-depth interviews were relevant to focus group participants, six of which were deemed as most important and actionable treatment decisions. Researcher-caregiver-key stakeholder agreement on concept definition was 77%. Analysis of the treatment scenarios identified ten concepts linked to a treatment decision: six treatment-oriented (medication, behavior, services, social, treatment-effects, school) and four outcomes-oriented (school, social, independence, behavior). Content analysis of the transcribed interviews led to three levels for each of the six treatment-oriented attributes. Two conceptual frameworks emerged: 1) treatment management with six three-level attributes; 2) outcomes with 16 object-level attributes.

Conclusion: Systematic implementation of qualitative methods produced a framework of relevant, important, and actionable attributes representing competing alternatives in clinical decisions.