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Caregiver Collaboration

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ABAI presentation companion collection · Didiana (Didi) De La Osa, BCBA-D

Original educational practice aids informed by the session readings. Not validated assessments or diagnostic instruments.

Material credit: Newly written instructional synthesis prepared for PBHC’s presentation resource hub. The wording, prompts, illustrative dialogue, and worksheet layout are presentation materials, not reproduced author or publisher instruments. The cited authors are credited for the underlying concepts. These tools have not been validated; citation does not imply author endorsement.

Tool 01

Grief & Living Loss Quick Guide

A short guide to noticing context without assuming every family experiences grief.

  1. Ask how the caregiver describes their experience. Do not assign a grief stage or treat autism itself as a loss.
  2. Notice transitions: school entry, service changes, adolescence, or discharge may bring new questions.
  3. Ask: “What has this change been like for your family?”
  4. Reflect the caregiver’s language; acknowledge strengths and sources of joy alongside challenges.
  5. Agree on one practical adjustment and revisit whether it helped.

Conceptual sources: (Alimohamadi et al., 2024; Bravo-Benítez et al., 2019; Coughlin & Sethares, 2017; Taylor et al., 2019). The specific prompts and examples are newly written teaching suggestions, rather than tested protocols from these sources.

Shared next step:

Tool 02

Grief-Responsive Check-In Guide

Five questions for an intake, transition, or routine caregiver meeting.

  1. What feels most important for us to understand today?
  2. What has changed since we last met?
  3. What is going well for your family?
  4. Would listening, information, or planning be most helpful right now?
  5. What is one next step we can agree on together?

Conceptual sources: (Alimohamadi et al., 2024; Coughlin & Sethares, 2017; Taylor et al., 2019). The specific prompts and examples are newly written teaching suggestions, rather than tested protocols from these sources.

Shared next step:

Tool 03

Compassionate Communication Checklist

Observable actions to practice before, during, and after a conversation.

  1. Ask permission to discuss the topic and confirm language or interpreter preferences.
  2. Give the caregiver time to finish; pause before responding.
  3. Reflect what you heard and ask whether you understood correctly.
  4. Use everyday language and ask what questions remain.
  5. Offer choices, check feasibility, and summarize the shared next step.
  6. Ask: “Did you feel heard? What should I do differently next time?”

Conceptual sources: (Taylor et al., 2019). The specific prompts and examples are newly written teaching suggestions, rather than tested protocols from these sources.

Shared next step:

Tool 04

Before You Call It Noncompliance

A context review before interpreting missed practice or attendance.

  1. Describe what occurred without labels: which task, when, and under what conditions?
  2. Was the plan explained clearly, modeled, and practiced with feedback?
  3. Ask about time, transportation, materials, language, competing needs, and accessibility.
  4. Check whether the goal matters to the family and whether the procedure feels acceptable.
  5. Invite the caregiver to identify what makes the plan difficult.
  6. Revise one barrier together; measure feasibility and outcomes before making another change.

Conceptual sources: (Taylor et al., 2019; Wilson, 2023). The specific prompts and examples are newly written teaching suggestions, rather than tested protocols from these sources.

Shared next step:

Tool 05

Parent Values & Relationship Interview

Questions that connect family priorities to meaningful goals.

  1. What would you like daily life to look like?
  2. What do you most enjoy doing with your child?
  3. Which routines would you like to make easier?
  4. What has helped you feel respected by providers?
  5. What would you like us to avoid or change?
  6. Which small goal feels worth working toward this week?

Conceptual sources: (Taylor et al., 2019; Wilson, 2023). The specific prompts and examples are newly written teaching suggestions, rather than tested protocols from these sources.

Shared next step:

Tool 06

Family Context & Cultural Questionnaire

A permission-based conversation about the family’s routines and preferences.

  1. Who would you like involved in planning and decision-making?
  2. Which languages and communication formats work best?
  3. Which traditions, beliefs, or routines should our recommendations respect?
  4. What demands compete with practice time?
  5. What supports are available, and which would you like help locating?
  6. What have I not asked that would help me understand your family?

Conceptual sources: (Behavior Analyst Certification Board [BACB], 2020; Taylor et al., 2019). The specific prompts and examples are newly written teaching suggestions, rather than tested protocols from these sources.

Shared next step:

Tool 07

Parent Well-Being Conversation Guide

A non-diagnostic check-in about support needs and service fit.

  1. Ask permission: “Would it be okay to discuss how the current schedule is working for you?”
  2. How manageable do the service demands feel?
  3. What helps you recharge or feel supported?
  4. Would you like help identifying other support services?
  5. If the caregiver requests mental health support beyond your competence, discuss referral and coordinate with consent.
  6. Collect only information relevant to services; explain how it will be used.

Conceptual sources: (Behavior Analyst Certification Board [BACB], 2020; Taylor et al., 2019). The specific prompts and examples are newly written teaching suggestions, rather than tested protocols from these sources.

Shared next step:

Tool 08

Caregiver Interaction Observation Guide

Observe shared routines while respecting choice and context.

  1. Agree on the routine, purpose, and permission to observe.
  2. Record observable caregiver and child actions without judging parenting style.
  3. Note opportunities for choice, communication, connection, prompting, and reinforcement.
  4. Record environmental conditions and supports available during the routine.
  5. Ask whether the observation reflects a typical day.
  6. Share a strength first, then agree on one practice goal and a feedback plan.

Conceptual sources: (Taylor et al., 2019; Wilson, 2023). The specific prompts and examples are newly written teaching suggestions, rather than tested protocols from these sources.

Shared next step:

Tool 09

Values & Action Reflection

An ACT-informed conversation starter for practitioners with relevant training.

  1. What matters to the caregiver in this routine? Use their words.
  2. What thoughts, feelings, or practical barriers do they choose to share?
  3. Which actions seem to move toward what matters? Check with the caregiver.
  4. Which actions seem to move away, and what short-term function might they serve? Avoid judgment.
  5. Identify one freely chosen, achievable action and review it together.
  6. Keep the exercise tied to consented behavioral goals; do not use it to process trauma or diagnose mental health conditions.

Conceptual sources: (Behavior Analyst Certification Board [BACB], 2020; Wilson, 2023). The specific prompts and examples are newly written teaching suggestions, rather than tested protocols from these sources.

Shared next step:

Tool 10

ACT Scope of Competence Reflection

A planning aid before adding an ACT-informed activity.

  1. What observable behavioral goal will this activity serve?
  2. What training, supervised experience, and consultation support my competence?
  3. Have I explained the activity, alternatives, and right to decline?
  4. Is this behavioral skills work within my role, or does the need call for another professional?
  5. How will I measure benefit, acceptability, and possible unwanted effects?
  6. What would lead me to stop, consult, or refer?

Conceptual sources: (Behavior Analyst Certification Board [BACB], 2020; Wilson, 2023). The specific prompts and examples are newly written teaching suggestions, rather than tested protocols from these sources.

Shared next step:

Tool 11

Difficult Conversation Role-Plays

Three brief scenarios for rehearsal and feedback.

  1. Scenario 1: “Everyone keeps telling me what to do. Nobody asks what our life is like.” Practice listening, reflecting, and asking one open question.
  2. Scenario 2: “We did not practice. I am exhausted after work.” Explore feasibility, ask permission to brainstorm, and choose a smaller step.
  3. Scenario 3: “Starting a new school brings up everything again.” Acknowledge the caregiver’s experience without assuming what they feel.
  4. Observer: identify one observable strength and one action to practice again.
  5. Repeat the conversation with feedback; ask the person playing the caregiver whether the response felt respectful.

Conceptual sources: (Parsons et al., 2012; Taylor et al., 2019). The specific prompts and examples are newly written teaching suggestions, rather than tested protocols from these sources.

Shared next step:

Tool 12

Supervisor Observation & Feedback Sheet

Use behavioral skills training to practice caregiver collaboration.

  1. SET UP: Explain the target skill, model it, and agree on the observation context.
  2. DO: Observe a role-play or consented interaction. Record actions rather than inferred intentions.
  3. Track: permission sought; uninterrupted listening; accurate reflection; open question; shared next step. Mark observed, not observed, or no opportunity.
  4. REFLECT: Ask the practitioner to evaluate the interaction; give specific feedback.
  5. Rehearse the selected improvement and observe again in another appropriate context.
  6. Include caregiver feedback. Set an individualized performance criterion before evaluating progress.

Conceptual sources: (Behavior Analyst Certification Board [BACB], 2020; Parsons et al., 2012; Taylor et al., 2019). The specific prompts and examples are newly written teaching suggestions, rather than tested protocols from these sources.

Shared next step:

Annotated references

Alimohamadi, A., Ghasemzadeh, M., Fooladi, F., Abdolmohamadi, K., Killikelly, C., & Janghorbanian, Z. (2024). Living-loss: A narrative synthesis review of the grief process in parents of children with autism spectrum disorder. Journal of Pediatric Nursing, 77, e97–e107. https://doi.org/10.1016/j.pedn.2024.03.036

A narrative synthesis exploring grief-related experiences in the literature. Use it as context for asking individualized questions, without presuming that a caregiver identifies with grief or loss.

Beaulieu, L., & Jimenez-Gomez, C. (2022). Cultural responsiveness in applied behavior analysis: Self-assessment. Journal of Applied Behavior Analysis, 55(2), 337–356. https://doi.org/10.1002/jaba.907

Addresses practitioner self-assessment of cultural responsiveness. Relevant to reflecting on assumptions and family preferences; the questionnaire on this site is not the article’s assessment.

Bravo-Benítez, J., Pérez-Marfil, M. N., Román-Alegre, B., & Cruz-Quintana, F. (2019). Grief experiences in family caregivers of children with autism spectrum disorder (ASD). International Journal of Environmental Research and Public Health, 16(23), Article 4821. https://doi.org/10.3390/ijerph16234821

An empirical examination of caregiver grief experiences and perceived burden. Discuss the findings as context-specific evidence; they do not justify assigning grief to every family.

Carr-Fanning, K., Lynam, A. M., Nicholson, T., & McGuckin, C. (2025). From ADHD diagnosis to meaning: Does grief theory enhance our understanding of narrative reconstruction? Brain Sciences, 15(10), Article 1045. https://doi.org/10.3390/brainsci15101045

An additional reading about grief theory and narrative reconstruction in the context of ADHD diagnosis. Its population and focus differ from caregiver collaboration in autism; do not treat it as direct evidence for the worksheets.

Coughlin, M. B., & Sethares, K. A. (2017). Chronic sorrow in parents of children with a chronic illness or disability: An integrative literature review. Journal of Pediatric Nursing, 37, 108–116. https://doi.org/10.1016/j.pedn.2017.06.011

An integrative review across chronic illness and disability contexts. Helpful for thinking about recurring support needs; its scope extends beyond autism.

Gordon, J. (2009). An evidence-based approach for supporting parents experiencing chronic sorrow. Pediatric Nursing, 35(2), 115–119. https://pubmed.ncbi.nlm.nih.gov/19472675/

A nursing article addressing support for parents experiencing chronic sorrow. Relevant background for individualized support; nursing recommendations are not automatically behavior-analytic procedures.

Karst, J. S., & Van Hecke, A. V. (2012). Parent and family impact of autism spectrum disorders: A review and proposed model for intervention evaluation. Clinical Child and Family Psychology Review, 15(3), 247–277. https://doi.org/10.1007/s10567-012-0119-6

Reviews parent and family factors and proposes considering family outcomes when evaluating intervention. Useful when discussing service feasibility and the family’s priorities.

Masterson, M. K. (2010). Chronic sorrow in mothers of adult children with cerebral palsy: An exploratory study (Publication No. 3408137) [Doctoral dissertation, Kansas State University]. ProQuest Dissertations & Theses Global. https://www.proquest.com/docview/597186156/

An exploratory doctoral dissertation focused on mothers of adult children with cerebral palsy. Included as population-specific background, not as evidence that all caregivers experience chronic sorrow.

Parsons, M. B., Rollyson, J. H., & Reid, D. H. (2012). Evidence-based staff training: A guide for practitioners. Behavior Analysis in Practice, 5(2), 2–11. https://doi.org/10.1007/BF03391819

A practitioner guide to performance-based staff training. Supports instruction, modeling, rehearsal, and feedback; the specific caregiver scenarios and observation sheet here are newly written educational examples.

Shamash, E. R., & Hinman, J. A. (2022). Assessing caregiver stress and coping at time of autism spectrum disorder diagnosis. Early Childhood Education Journal, 50(1), 97–106. https://doi.org/10.1007/s10643-020-01145-2

Discusses assessment of caregiver stress and coping in planning individualized early intervention supports. The final journal issue is dated 2022; its advance online publication appeared in 2021. No assessment items are reproduced here.

Taylor, B. A., LeBlanc, L. A., & Nosik, M. R. (2019). Compassionate care in behavior analytic treatment: Can outcomes be enhanced by attending to relationships with caregivers? Behavior Analysis in Practice, 12(3), 654–666. https://doi.org/10.1007/s40617-018-00289-3

A conceptual paper describing relationship skills and ways to teach them. Use it to plan observation, modeling, rehearsal, and feedback; proposed benefits should not be treated as established causal effects.

Trembath, D., Gurm, M., Scheerer, N. E., Trevisan, D. A., Paynter, J., Bohadana, G., Roberts, J., & Iarocci, G. (2019). Systematic review of factors that may influence the outcomes and generalizability of parent-mediated interventions for young children with autism spectrum disorder. Autism Research, 12(9), 1304–1321. https://doi.org/10.1002/aur.2168

Reviews factors relevant to parent-mediated intervention outcomes and generalizability. Useful context for discussing individual differences and implementation demands; it does not validate this site’s practice aids.