Introduction
A Functional, Contextual Approach to Engagement
Factors Affecting Engagement
Challenges for Behavior Analysts
A Potential Solution
Method
Stage 1: Development of the PAIRS
Factor | Definition | Examples of studies drawn from | Study design | Participants |
---|---|---|---|---|
Facilitators | ||||
Effective intervention | Parent and child gain knowledge and skills, and family interactions improve. Effective adult learning strategies are used | Bowker et al. (2011) Carlon et al. (2013) | Survey Systematic review | 970 parents 2141 parents across 16 studies |
Parent self-efficacy and empowerment | Parents are empowered to understand their child’s development and how they could facilitate their child’s developmental successes | Brookman-Frazee (2004) Russell and Ingersoll (2021) | Repeated reversal design Mixed method | 3 children and parents 51 parents |
Family, peer, and community support | Spousal agreement, peer support, and support and acceptance from extended family and wider community | DuBay et al. (2018) Moore and Symons (2011) | Mixed method Survey | 55 parents 21 parents |
Child- and family-centred goals and strategies | Contextualization and compatibility with values and lifestyle. Intervention is specific to the needs of the child and provided in a flexible, responsive manner | Coogle and Hanline (2016) Stanford et al. (2020) | Interviews, observations and document analyses Thematic analysis | 5 families and 5 service providers 17 mothers |
Positive relationship with practitioner | Practitioner uses a non-directive collaborative approach and orients to family strengths | Amsbary et al. (2020) Freuler et al. (2014) | Exploratory qualitative approach Thematic analysis | 6 parents 14 families |
Additional supports and key provider partnerships | Additional supports are provided where necessary. Collaboration between different service providers is positive and coordinated | Carr and Lord (2016) Helkkula et al. (2020) | Mixed method Qualitative content analysis | 8 mother–child dyads 26 parents and 14 service providers |
Barriers | ||||
Logistical Factors | ||||
Difficulties with access | Affordability, availability, and scheduling | Parker and Childs (2019) Pickard and Ingersoll (2016) | Interpretive phenomenological analysis Mixed method | 5 parents 244 parents |
Administrative difficulties | Difficulties with therapists, equipment, or materials | Grindle et al. (2009) Mackintosh et al. (2012) | Content analysis Web-based qualitative study | 53 parents 486 parents |
Child Factors | ||||
Complex child profile | Child factors that may impact their ability to benefit from intervention such as verbal skills and problem behaviour | Carr et al. (2016) Stahmer et al. (2017) | Randomized controlled trial Mixed method | 147 child-caregiver dyads 13 parents |
Sibling Factors | ||||
Difficulties for siblings | Challenges for siblings such as lack of attention, having to stay out of the way during sessions, or exhibiting increased problem behaviour | McPhilemy and Dillenburger (2013) Pickard et al. (2017) | Survey Mixed method | 15 families 103 parents |
Parent factors | ||||
Individual or cultural concerns | Mismatch between the intervention and individual needs, values, and preferences of families, including cultural factors | Stahmer et al. (2019) Mytton et al. (2014) | Thematic analysis (focus groups and interviews) Systematic review and framework synthesis | 58 caregivers and 55 service providers Parents, researchers, and service providers across 26 studies |
Difficult circumstances | Circumstances that are challenging for the family, including chronic and/or acute stressors | Hock, Yingling, et al. (2015) Wicks et al. (2019) | Qualitative analysis Hierarchical multiple regression analyses | 13 parents 97 mothers |
Treatment burden | Demands placed on the child and family during intervention are too high | Kazdin et al. (1997) Rivard et al. (2020) | Prospective study Content analysis | 260 families 28 parents |
Training not the right fit | Mismatch between parent needs/preferences and intervention characteristics such as training model, adult learning strategies, or treatment complexity | Leadbitter et al. (2020) Raulston et al. (2019) | Thematic analysis Iterative content analysis (focus groups) | 18 parents 30 parents |
Low motivation or belief in effectiveness | Low or fluctuating motivation to engage in intervention and/or low belief that the intervention will be effective | Shepherd et al. (2018) Solish and Perry (2008) | Survey Survey | 570 parents 48 parents and 34 therapists |
Intervention factors | ||||
Variations in treatment efficacy | Child not progressing as expected, slow progress, or regression in target skills | Botterill et al. (2019) Manohar et al. (2020) | Thematic analysis Thematic content analysis | 8 parents 30 families |
Difficulties with generalization | Difficulties with generalization or maintenance of skills learned in intervention | Mitteer et al. (2018) Strauss et al. (2012) | Laboratory model Hierarchical linear regression analyses | 4 caregivers 44 families |
Stage 2: Evaluation of Content Validity
Participants and Recruitment
Category | Demographics | Number | Proportion |
---|---|---|---|
Gender | Male | 3 | 20% |
Female | 12 | 80% | |
Certification | BCBA | 13 | 86.7% |
BCBA-D | 2 | 13.3% | |
Highest level of education | MA/MSc | 12 | 80% |
PhD | 3 | 20% | |
Years of experience | 6–10 years | 4 | 26.7% |
11–20 years | 10 | 66.7% | |
Over 20 years | 1 | 6.7% | |
Area of emphasisa | Early Intensive Behavioural Intervention (EIBI) | 13 | 86.7% |
Positive Behaviour Support (PBS) | 10 | 66.7% | |
Activities of Daily Living (ADLs) | 13 | 86.7% | |
Social and Communication skills | 13 | 86.7% | |
Sleep issues | 4 | 26.7% | |
Feeding issues | 6 | 40% | |
Academic/Educational skills | 7 | 46.7% | |
Vocational/Employment skills | 3 | 20% | |
Otherb | 1 | 6.7% | |
Types of parent training provideda | In-person | 15 | 100% |
Telehealth | 7 | 46.7% | |
Individual | 11 | 73.3% | |
Group | 6 | 40% | |
Primary (all parent-mediated) | 10 | 66.7% | |
Secondary (therapist-delivered with some PT) | 11 | 73.3% | |
Sibling training | 1 | 6.7% | |
Other | 1 | 6.7% | |
Typical length of parent training services | 4–12 weeks | 2 | 13.3% |
Over 12 months | 6 | 40% | |
Variable/consultative basis | 7 | 46.7% | |
Age of clientsa | 0–2 | 7 | 46.7% |
3–6 | 14 | 93.3% | |
7–12 | 11 | 73.3% | |
13–17 | 10 | 66.7% | |
18–25 | 7 | 46.7% | |
26–40 | 4 | 26.7% | |
41–64 | 1 | 6.7% | |
65 and above | 1 | 6.7% | |
Typical client profilea | Autism Spectrum Disorder | 15 | 100% |
Intellectual/Developmental Disabilities | 11 | 73.3% | |
Emotional or Behavioural Disorders | 3 | 20% | |
Typically Developing | 3 | 20% | |
Approximate number of families who have received PT services | 10 or fewer | 2 | 13.3% |
11–20 | 3 | 20% | |
21–30 | 4 | 26.7% | |
31–50 | 5 | 33.3% | |
Over 50 | 1 | 6.7% |
Instrument and Distribution
Analysis
Stage 3: Evaluation of Utility
Participants and Recruitment
Workshop
Evaluation and Analysis
Results
Stage 1: Development
Barrier | Original solutions | I-CVI values | Relevant comments/suggestions | Revised solutions | ||
---|---|---|---|---|---|---|
Relevance | Effectiveness | Appropriateness | ||||
Difficulties with access | Connect families with charities, insurance, funding supports, etc., where appropriate | 0.87* | 0.73 | 0.8* | Some comments noted how these were not possible for them | Connect families with charities, insurance, funding supports, etc., where possible and appropriate |
Telehealth or home-based training | 1* | 0.93* | 0.93* | Include pre-recorded trainings | Telehealth, self-directed learning, or home-based training | |
Flexible training days/times | 0.93* | 0.87* | 0.93* | Flexibility to follow up with staff and consultants on a regular basis when issues arise; Re-scheduling | Flexible training days/times, including flexibility to reschedule or follow up with staff as needed | |
Explicit strategies for involving child/sibling (e.g., sibling training component) | 0.73 | 0.67 | 0.87* | Approach family as a whole early on | Approach family as a whole, including strategies for occupying or involving child and siblings | |
N/A | N/A | N/A | N/A | Coordinated team approach to scheduling of appointments | Coordinate a team approach to scheduling of appointments | |
N/A | N/A | N/A | N/A | Providing childcare, meals or meeting other needs for families | Provide or connect family with childcare, meals, or other needs | |
Administrative difficulties | Telehealth or clinic-based training | 0.73 | 0.73 | 0.8* | Easy to access modes of contact, e.g., phone, WhatsApp, Teams | Flexible models of service delivery, including easy-to-access modes of contact (e.g., WhatsApp) |
Provide (or reduce need for) additional therapy materials | 0.87* | 0.87* | 0.67 | Online portal to request materials; Toy/game lending library; Use of apps and software | Provide (or reduce need for) additional therapy materials (e.g., apps and software, online portal to request materials, toy lending library) | |
Collaboratively problem-solve on setting up home environment or choosing appropriate community settings | 0.87* | 0.87* | 0.8* | N/A | Keep same solution | |
N/A | N/A | N/A | N/A | Provide parent-friendly data sheets | Provide parent-friendly data sheets | |
Complex child profile | Individualize child programming (e.g., adaptations for non-verbal children) | 1* | 1* | 1* | N/A | Keep same solution |
Multidisciplinary collaboration (e.g., with SLT, OT) | 0.93* | 0.73 | 0.93* | MDT should meet to discuss recommendations and use an agreed framework to decide order of recommendations and how to evaluate effectiveness | Multidisciplinary collaboration (e.g., with SLT, OT) using a coordinated, positive approach | |
Additional parent training in Positive Behaviour Support | 1* | 1* | 1* | Provide an understanding of the function of behaviour and a collaboratively designed treatment plan; Parents need a basic understanding of PBS prior to seeing you | Additional parent training in Positive Behaviour Support, including a basic understanding of PBS prior to intervention and clear mutual understanding of the function of behaviour | |
Difficulties for siblings | Identify and collaboratively problem-solve source of sibling difficulty | 1* | 0.93* | 0.93* | N/A | Keep same solution |
Explicit strategies for including siblings (e.g., sibling training, parent training specific to sibling) | 1* | 0.8* | 0.87* | Sibling support group, e.g., Sibshops | Explicit strategies for including siblings (e.g., sibling training, sibling groups) | |
Individual or cultural concerns | Clarify values and goals at the outset and on an ongoing basis | 1* | 0.8* | 1* | N/A | Keep same solution |
Collaborate with both parents on goal-setting, selecting target behaviour, and implementation strategies | 1* | 0.87* | 0.93* | N/A | Keep same solution | |
Provide clear rationale for intervention strategies | 0.93* | 1* | 0.93* | N/A | Keep same solution | |
Shape successive approximations and establish intermediate outcomes as reinforcers (e.g., when trying to transition away from discipline practices such as spanking) | 0.67 | 0.73 | 0.67 | Several comments focused on the example of spanking so example was changed | Shape successive approximations and establish intermediate outcomes as reinforcers (e.g., when trying to transition away from discipline practices such as yelling) | |
Collaborate with (or refer to) professionals from the same culture where appropriate | 0.8* | 0.87* | 0.8* | Needs of second-language learners | Collaborate with (or refer to) professionals from the same culture where appropriate, especially if there is a language barrier | |
Seek training in cultural competence (e.g., on maintenance of cultural identities, upholding religious practices, role of extended family and community, gender roles) | 0.93* | 0.93* | 0.93* | N/A | Keep same solution | |
Difficult living circumstances | Multidisciplinary collaboration (e.g., with social worker) | 0.93* | 0.87* | 0.93* | N/A | Keep same solution |
Reduce treatment burden and/or complexity | 1* | 0.73 | 1* | N/A | Keep same solution | |
Increase treatment relevance | 0.93* | 0.93* | 0.93* | N/A | Keep same solution | |
Collaborative problem-solving (e.g., around structural barriers) | 1* | 0.93* | 0.93* | N/A | Keep same solution | |
N/A | N/A | N/A | N/A | Outreach/respite; Identify whether other services need to be prioritized | Connect with outreach/respite services, which may need to be prioritized over behavioural services | |
Treatment burden and stress | Identify source of stress (e.g., demand for involvement too high, lack of time for other activities) | 1* | 0.8* | 0.93* | N/A | Keep same solution |
Reduce treatment burden, intensity, and/or complexity | 1* | 0.93* | 1* | N/A | Keep same solution | |
Regular check-ins with family | 0.93* | 0.87* | 0.93* | N/A | Keep same solution | |
Flexible training days/times | 0.87* | 0.8* | 0.93* | Mixed models e.g., in person and online | Flexible training days/times and models of delivery (e.g., blended models) | |
Distance-learning options | 0.8* | 0.6 | 0.87* | N/A | Incorporated into above solution | |
Proactively problem-solve for challenging situations | 0.93* | 0.93* | 0.93* | N/A | Keep same solution | |
N/A | N/A | N/A | N/A | Incorporate ACT; Identify stage of readiness of change | Incorporate ACT strategies | |
N/A | N/A | N/A | N/A | Outreach/respite | Connect family with outreach/respite services | |
Training not the right fit | Provide different training options (e.g., self-directed, Telehealth, individual, group, etc.) depending on parent needs/preferences | 0.93* | 0.73 | 0.8* | N/A | Keep same solution |
Teaching materials incorporate a variety of effective adult learning strategies | 0.93* | 0.87* | 1* | N/A | Keep same solution | |
Adjust intervention complexity as needed | 0.87* | 0.87* | 0.93* | N/A | Keep same solution | |
N/A | N/A | N/A | N/A | Incorporate ACT | Incorporate ACT strategies | |
Low motivation/belief in effectiveness | Collaborate with both parents on goal setting, selecting target behaviour, and implementation strategies | 0.87* | 0.87* | 0.93* | N/A | Keep same solution |
Establish intermediate outcomes as reinforcers | 1* | 0.93* | 1* | N/A | Keep same solution | |
Establish treatment relevance through regular check-ins on priority family goals | 0.87* | 1* | 0.93* | N/A | Keep same solution | |
Share parent-friendly data sheets | 0.8* | 0.67 | 0.87* | N/A | Share parent-friendly graphs to show progress | |
Create behavioural momentum by setting smaller, achievable goals at the start and as needed throughout the intervention | 1* | 1* | 1* | N/A | Keep same solution | |
N/A | N/A | N/A | N/A | Incorporate ACT | Incorporate ACT strategies | |
N/A | N/A | N/A | N/A | Detailed discussion of previous interventions and the reasons for why those interventions were not effective | Discuss previous interventions in detail and why they were not effective | |
N/A | N/A | N/A | N/A | N/A | Moved from barrier “Difficulties with Generalization”: Connect with peer support (e.g., other parents who completed the same training) | |
Variations in treatment efficacy | Explicitly acknowledge that strategies may not always be effective or that there may be setbacks and plan for this early ona | 0.93* | 0.53 | 1* | Set expectations and highlight level of commitment and involvement; Realistic expectations for how often data is collected, how long they will need to collect it, and a plan for when it's reviewed | Set clear and realistic expectations at the outset, including levels of involvement, a plan for collecting and reviewing data, and explicit acknowledgment that there may be setbacks |
Involve parents in problem-solving solutions and adaptations | 1* | 0.87* | 0.93* | Give general info and then collaboratively problem-solve; Shared understanding of function of behaviour | Promote shared understanding and collaborative problem-solving | |
Program for generalization | 0.93* | 1* | 1* | N/A | Keep same solution | |
Share parent-friendly data sheets | 0.93* | 0.87* | 0.93* | N/A | Keep same solution | |
N/A | N/A | N/A | N/A | Incorporate ACT | Incorporate ACT strategies | |
Difficulties with generalization | Program for generalization | 1* | 1* | 1* | N/A | Keep same solution |
Discuss and problem-solve potential difficulties in advance (e.g., implementing strategies around disapproving family members) | 1* | 0.87* | 1* | N/A | Keep same solution | |
Connect with peer support (e.g., other parents who completed the same training) | 0.87* | 0.73 | 0.73 | N/A | Moved to Low motivation/belief in effectiveness | |
Incorporate a self-management system | 0.93* | 0.8* | 0.93* | Develop a reinforcer system for the parents for their fidelity to treatment behaviours | Incorporate a self-management system or work with parent to recruit reinforcement (e.g., spouse) | |
Establish a check-in schedule (e.g., short check-ins between sessions, monthly check-ins after completion of training) | 0.93* | 0.87* | 0.93* | Tailor amount of contact | Establish an individualized check-in schedule (e.g., short check-ins between sessions, monthly check-ins after completion of training) | |
Total | S-CVI/Ave | 0.92** | 0.85 | 0.91** | N/A | N/A |
Stage 2: Evaluation of Content Validity
CVI for Logistical Factors
CVI for Child and Sibling Factors
CVI for Parent Factors
CVI for Intervention Factors
Narrative Suggestions
Revision
Name | When to use | Purpose | Content |
---|---|---|---|
Introduction to the PAIRS | First time using the PAIRS As needed for clarification or guidance | Provide background information and instructions on how to use the tool | Information on the purpose and development of the PAIRS An overview of the components of the PAIRS A flowchart of how to use the PAIRS in practice |
PAIRS Good Practice Checklist for Practitioners | Developing or planning general PII | Provide practitioners with strategies to develop an intervention that is likely to promote parent engagement, by building on common facilitators and avoiding negative effects of common barriers | Instructions for using the Checklist 23 items mapping onto identified facilitators and barriers Potential adjustments to intervention factors Suggested practitioner skills and behaviors |
PAIRS Assessment and Individualization Plan | Intake with a new family As needed when parent engagement is low or decreasing | Aid practitioners in gathering information about a family’s unique barriers and facilitators, identifying the most critical barriers and facilitators, and collaboratively developing a plan to adapt the intervention or provide additional services or referrals | Instructions for using the Assessment and Individualization Plan A sample completed Assessment and Individualization Plan 30 items mapping onto identified facilitators and barriers Space to list top 3 facilitators and top 3 barriers Space to record intervention adaptations and/or additional services and referrals |
PAIRS Table of Function-based Solutions | In conjunction with the PAIRS Assessment and Individualization Plan | Suggest potential function-based solutions to common barriers as a guide for collaborative problem-solving with the parent | Instructions for using the Table 50 suggestions for intervention adaptions 9 suggestions for additional services and referrals |
Appendix | First time using the PAIRS As needed for clarification or guidance | Provide operational definitions of terms used in the PAIRS and suggestions for further reading | Definitions of 6 facilitators Definitions of 11 barriers List of potentially unfamiliar terms and concepts with suggestions for further reading (e.g., compassionate care, ACT) |
Stage 3: Evaluation of Utility
Item | Number of ratingsa | |
---|---|---|
Agree | Strongly agree | |
The PAIRS has encouraged me to think more intensively about the family’s contextual barriers | 0 | 4 |
The PAIRS contains factors that I had not thought about in the context of the family’s intervention engagement and progress | 0 | 4 |
I see a relationship between the PAIRS and my daily work | 1 | 3 |
By using the PAIRS, I see the family’s challenges from another perspective | 0 | 4 |
With the PAIRS, I can better describe the family’s barriers and facilitators to others (e.g., colleagues, multidisciplinary teams) | 0 | 4 |
Planning and adapting interventions to address the family’s barriers is easier with the information provided by the PAIRS | 1 | 3 |
Using the PAIRS provides information about the families that I did not know before | 1 | 3 |
Since the introduction of the PAIRS, I have a better understanding of the barriers the family faces | 2 | 2 |
I feel that the family’s engagement and progress will change positively with the introduction of the PAIRS | 2 | 2 |
The PAIRS gives me the opportunity to build on the strengths and individuality of the child and family | 2 | 2 |
The PAIRS will help me build and maintain a positive collaborative relationship with the family | 2 | 2 |
The PAIRS provides helpful guidance for professional development and further reading | 2 | 2 |