Working with Adults with Intellectual Disability and Clinicians to Advance Mental Health Treatment: Informing Practice Guidelines and Research

Figures & data

Table 1. Clinician and client themes: code words and definitions.

Code word(s)	Definition in Client Focus Groups	Definition in Clinician Focus Groups
Partnersin Communication	Someone to talk to who is willing to listen and take time to understand them	Meeting clients where they are cognitively, linguistically and treating them as a partner in therapy
Rapport Building	Using interests (to build relationship with client and therapist)	Building a respectful relationship based on an individualized view of the individual
Confidentiality	Confidentiality and understanding of information sharing among team members	Confidentiality
Accommodations and supports	Accommodations through communication and visual supports; accessibility challenges	Actively and dynamically Creating support throughout the therapeutic process
Support People	Involving support people	Benefits, considerations, and challenges of involving caregivers in the therapeutic process
Therapeutic process	Types and characteristics of treatment and how therapist individualized	Assessment/Structure of Therapy/ Treatment modality/
Treatment Goals	How treatment goals are generated and how clients are included	Process of generating goals and challenges
Group Therapy	Experiences and impressions of group therapy	Process of group therapy and perceived positive attributes
Barriers	Personal, team, and systemic barriers	Personal, team, and systemic barriers
Advocacy and Agency	Clinician advocating for client with intellectual disability; client learning self-determination and advocacy skills	Agency, Self-Advocacy, and Empowerment in the therapy process
Therapist Characteristics	Perceived positive attributes of a good therapist; characteristics that acted as a barrier to therapy	N/A

Table 2. Client and provider subthemes.

Themes	Client Subthemes	Provider Subthemes
Partners in Communication	Protected time to talk with someone kind who is willing to listen and try to understand client perspective	Treating client like a person and a partner in therapy – ensuring client feels heard and validated
	Someone to talk to besides a parent	A Person-centered Approach: meeting clients where they are – deciding on appropriate communication and accommodations, working with them to facilitate their own problem solving
	Therapists challenging and encouraging client to change	Do not oversimplify interaction or infantize client; normalize their experiences
Rapport Building	Making therapeutic environment more comfortable by including client interests (e.g., including animals, letting clients bring in their own objects of interest or comfort)	Use client strengths and preferences to guide therapy.
	Using interest as a therapy tool (e.g., using art to express themselves)	More self-disclosure with clients, such as discussion of shared interests
	Playing games or playing with sensory toys while talking	Incorporate shared interest activities into therapy (e.g., listening to music, playing games) and more time listening to clients’ interests
Confidentiality	Therapists asking permission to include others (e.g., support people) in therapy	Emphasizing needing clients’ permission to talk with team
	Some therapists explained HIPPA and related laws (including exceptions to confidentiality)	Reminding clients they need to give permission to bring anyone into therapy
	Many saw benefit in therapist sharing information with others	Difficulty with family or support people who referred them (and feel they should know about client’s progress)
	Discomfort with telling therapist no to sharing information with others
Accommodations and Supports	Breaking down concepts with handouts that can include simplified language, larger font, and more visuals	Allow client sufficient time to respond and to ask therapist for further clarification
	Providing more time to process information and give answers	Simplified language with more repetition, more opportunities to practice
	Sending information home	Hands-on activities to make concepts more tangible (writing stories, event-mapping) and activities considered fun for client
	Closed Captioning for telehealth video visits	Visual supports and reminders (e.g., notecards, analogue clock
	1:1 support in group therapy settings	Incorporation of augmentative and alternative communication in therapy
Involving Support People	Support people help with scheduling/transporting to appointments	Important considerations when including support people.
	Importance of considering clients preferences for inclusion of support people.	Support people used in session to learn and help prompt or reinforce clients for using strategies
	Support people can help in communicating preferences of client	Use of team and family members to help generalize strategies and inform next steps (e.g., when to end); Support people give feedback on how client is doing outside of therapy
	Support people may be able to help with practicing skills outside of sessions
Therapeutic Process	Taking time to get to know the client	Establishing reason for referral and providing psychoeducation on what therapy is and is not
	Individualized and flexible approaches that included goal setting and challenging clients within their level	Importance of flexibility; planning structure of therapy and session with client input
		Use of assessment to determine unmet needs, establish baseline, and measure goals,
	Multiple therapeutic modalities and inclusion of skill building.	Gathering collateral (checking in before and/or after sessions with support person)
	Strategies mentioned included journaling, teaching what is and is not safe, role playing, charts and visuals	Example therapeutic modalities included: EMDR, CBT, play therapy, mindfulness, eclectic approaches, psychoeducation, and homework
Treatment Goals	Help generating goals with therapist’s perspective/input	Differentiation of client’s goals and others’ goals
	Goal generation could take up to several months	Clients are developing their own goals with therapist input
	Goals ranged from daily living skills to managing emotions to avoiding re-hospitalization	Use of assessment to determine goals
	Clients considered therapy a success when goals were met	Challenges to get clients to formulate goals in their own words
	Therapists assessed for improvement and needs throughout process
Group Therapy	Group therapy experiences as not inclusive of people with IDD	Group therapy can be powerful as it encourages clients to teach and help peers
	Anxiety speaking in front of others	Clients can learn they help others through group experiences
	Not enough time to speak	May be first time client is with individuals similar to them regarding intellectual disability and co-occurring mental health issues
	Some viewed group therapy as a way to get more comfortable interacting with others
Barriers	Therapist not understanding client’s disability	Support staff turnover
	Getting therapists to understand their disabilities	Support staff/caregivers having unrealistic expectations or ideas of therapy
	Difficult to find therapists who treat people with disabilities and co-occurring mental health diagnoses	Systemic barriers with mental health and developmental disability systems
	Navigating insurance
Advocacy and Empowerment in Therapy	Therapist empowered individual by having them set up (or give input on) structure of session	Therapy as a powerful empowerment tool
	Therapists teaching individual to advocate for themselves	Clients should have agency in therapy process (e.g., structure of therapy, treatment goals, who will (or will not) be included in therapy sessions
	Reaching out to other providers to advocate for client’s needs (including insurance and financial supports)	Examples for opportunities to teach advocacy and how to empower client
Therapist Characteristics	Value of therapist with lived experience	N/A
	Emotionally supportive and interested in the client as a person
	Does not make client feel judged