Development and utility of the Family-Centered Autism Navigation interview

Abstract

Navigating various systems, resources, and supports available for families of children with autism spectrum disorder is challenging. Family navigation is a potentially important support system for families of children with autism spectrum disorder. Family navigators are professionals who engage with families to enhance access to early identification and intervention services via shared navigation plans that help meet the family’s priorities and goals when navigating systems of support. Systematic processes and tools facilitating the development of a shared navigation plan with families following diagnosis are currently limited. This short report describes product development of the Family-Centered Autism Navigation using quality improvement methods including Lean Launch and qualitative methodology.

Lay abstract

When a parent learns of their child’s autism diagnosis, they may be overwhelmed, confused, and frustrated. Family navigation services are designed to improve access to care. While these services are a promising intervention to enhance well-being and developmental outcomes, there are limited tools that can systematically facilitate the development of a shared navigation plan that prioritizes the concerns of the family. The Family-Centered Autism Navigation semi-structured interview guide is designed for family navigators to triage and prioritize caregiver’s needs to coordinate and navigate systems of care after learning of their child’s autism spectrum disorder diagnosis. The goals of the Family-Centered Autism Navigation interview are to (1) identify family and child strengths; (2) identify family/caregiver concerns regarding navigation of services and systems following their child’s diagnosis of autism; (3) measure change in caregiver knowledge, ability and skill as it relates to understanding, remembering, and evaluating information they receive; and (4) assist with the development of a shared navigation plan. When using the Family-Centered Autism Navigation guide, family navigators and caregivers co-create a family-centered, prioritized action plan that supports and prepares caregivers as they navigate systems of care. This short report describes the development process of the Family-Centered Autism Navigation semi-structured interview guide. We utilized brief interviews (n = 42), expert feedback (n = 13), and quality improvement strategies (n = 2 family navigators) to develop the questions and determine the usability of the Family-Centered Autism Navigation interview in practice.

Keywords

autism spectrum disorders family functioning and support health services

Families of children with autism spectrum disorder (ASD) report challenges navigating various systems of care and locating available resources (e.g. Karst & Van Hecke, 2012). Family navigation approaches help families access and understand systems of care via research-based procedures, models, and tools (Broder-Fingert et al., 2020; Feinberg et al., 2016; Maternal and Child Health Research Program, 2014). Family navigators (FNs) are professionals with lived experience of having a child with ASD or special healthcare needs who engage families to enhance access to early identification and intervention services.

Emerging research describes important components of family navigation (Feinberg et al., 2016) and shows FNs increase service initiation and ongoing engagement (Feinberg et al., 2016). However, research on the development of family navigation interventions primarily focuses on FN training with less attention paid to the protocols and products used by FNs to facilitate or enhance the family navigation process. This short report describes the product development process of the Family-Centered Autism Navigation (Family CAN) semi-structured interview. The Family CAN is a comprehensive interview guide designed for FNs to use while working with families of children recently diagnosed with ASD. Specifically, it helps FNs develop a family-centered, prioritized action plan to support families as they navigate systems of care.

Methods

Design

The Family CAN was developed in three stages utilizing Lean Launch (Blank & Dorf, 2012) and qualitative methodology (i.e. online survey and telephone interviews), and Plan, Do, Study, Act (PDSA) quality improvement methods (Reed & Card, 2015).

Participants

Forty-two participants completed discovery interviews in Stage 1 (Lean Launch). Participants in Stage 1 consisted of professionals (n = 25), parents (n = 12), family members of Children with Special Health Care Needs (CSHCN; n = 4), and self-advocates (n = 1). In Stage 2 (qualitative methods), 13 expert participants completed an online survey assessing question clarity, importance, and emotional tone. Twelve of the 13 expert participants completed a follow-up phone interview. During Stage 3 (PDSA cycles), two FNs utilized the Family CAN with four families whose child was recently diagnosed with ASD. See Table 1 for participant demographics at each stage of the current project.

Table 1.

Demographic information of participants in Stages 1–3.

Variable	Descriptives, M (range) for Stage 2
Participant age (years)	45.7 (35–63)
Child age at diagnosis (years)	3.1 (1.17–8.0)
Current child age (years)	12.3 (5.0–21.0)
Variable	Stage 1	Stage 2	Stage 3
Variable	Frequency, n (%)	Frequency, n (%)	Frequency, n (%)
Total	42 (100.00)	13 (100.0)	6 (100.0)
Gender
Male	9 (21.4)	1 (7.7)
Female	28 (66.6)	12 (92.3)	6 (100.0)
Unreported	5 (11.9)
Location
Wisconsin (WI)	42 (100.00)	8 (61.5)	6 (100.0)
Other states outside WI		4 (30.8)
Unreported		1 (7.7)
Education
High school diploma/GED		2 (15.4)
4-year university		4 (30.8)
Post-graduate	42 (100.0)	7 (53.9)
Unreported			6 (100.0)
Ethnicity
Caucasian		10 (76.9)
African-American		2 (15.4)
Unreported	42 (100.0)	1 (7.7)
Role
Parent	12 (28.5)	8 (61.5)	4 (66.6)
Care coordinator		2 (15.4)
Parent/care coordinator	2 (33.3)
Family member	4 (9.5)
Professional	25 (59.5)
Self-advocate	1 (2.4)

GED: General Educational Development.

Table 2.

Revisions to Family CAN questions based upon expert feedback.

Survey results			Revisions post-survey
Question prompt	Clarity	Feeling about asking about performance	Additional prompt before question prompt	Revised question prompt
How well do you understand the results of the evaluation?	14/17 (82%) responses suggested that the question prompt was clear.	7/17 (41%) responses suggested that the question would make them feel uncomfortable or intimidated.	Sometimes, it is difficult to understand the results of an evaluation or the words used to describe the evaluation results? For some families, this is very overwhelming.	How satisfied are you with understanding the results of your child’s evaluation?
How well do you understand the difference between educational or medical diagnoses?	14/16 (87%) responses suggested that the question prompt was clear.	4/15 (26%) responses suggest that the question would be intimidating.	When a child is diagnosed with autism, they can receive a medical diagnosis or an educational determination for programming in school. There is a difference between the medical diagnosis and educational determination; this difference may be related to the services your child receives.	How satisfied are you with your understanding of the difference between educational or medical diagnoses?
How familiar are you with the therapy providers in your community?	10/14 (71%) responses suggested that the question prompt was clear, but would benefit from additional information.	1/14 (<1%) responses suggested that the question would be frustrating to ask or answer.	Children diagnosed with autism may be eligible to receive therapy services (intensive behavior therapy, occupational and speech therapy). There are different therapy providers in your community.	How satisfied are you with your familiarity with the therapy providers in your community?
How familiar are you with how therapy services are paid for?	12/13 (92%) responses suggested that the question prompt was clear.	1/13 (<1%) responses suggested that the question would be discouraging.	There are different ways that therapy services (intensive behavior therapy, occupational and speech therapy) can be paid for.	How satisfied are you with understanding how therapy services are paid for?
How well do you explain your child’s behavior or diagnosis to others?	11/13 (84%) responses suggested that the question prompt was clear but that additional information would improve clarity.	3/13 (23%) responses suggested that this may be intimidating or touchy.	Some caregivers say that it is difficult to explain their child’s behaviors and the diagnosis to people in the community (at school, shopping centers, playgrounds) and to other family members.	How satisfied are you with your ability to explain your child’s behaviors or diagnosis to others?
How well are you able to help others play or communicate with your child?	12/12 (100%) responses suggested that the question prompt was clear.	3/13 (23%) responses suggested that they would feel sad or intimidated if asked this question.	Sometimes, it is difficult for siblings (brothers and sisters) or other family members to play or communicate with children who have autism.	How satisfied are you with helping others play or communicate with your child?
How well can you create a rich and fulfilling life for your child?	10/13 (76%) responses suggested that the question prompt was clear.	7/14 (50%) responses suggested that they would feel sad, discouraged, intimidated if asked the question.	Question removed from interview.	Question removed from interview.
How familiar are you with other families who share the same concerns?	10/12 (83%) responses suggested that the question prompt was clear.	0/11 (0%) responses suggested a negative emotional response to the question.	Some family members want to connect with other families who share or have the same concerns.	How satisfied are you with meeting other families who share the same concerns?
How well are you able to address the safety needs of your child?	11/11 (100%) responses suggested that the prompt was clear.	4/11 (36%) responses suggested a negative emotional response to this question (embarrassed, sad, intimidated).	Families may want to know how to keep their child safe.	How satisfied are you with your ability to address the safety needs of your child?
How familiar are you with the equipment or transportation needs of your child?	10/11 (91%) responses suggested that the prompt was clear.	0/11 (0%) responses suggested a negative emotional response to the question.	Families may have questions about equipment or transportation.	How satisfied are you with your knowledge about equipment or transportation options for your child?
How well do you advocate for your child?	10/12 (83%) responses suggested that the prompt was clear.	2/12 (16%) responses suggested a negative emotional response to the question.	Some families need to advocate (fight for) for services for their child as there may be a need or concern that is not being met.	How satisfied are you with your ability to advocate for your child?
How prepared are you to complete next steps for your child?	11/11 (100%) responses suggested that the prompt was clear.	2/12 (16%) responses suggested a negative emotional response to the question.	Some families need help understanding what to do next or what the next steps are to best help their child.	How satisfied are you with your preparation to complete next steps for your child?
How well do you remember appointments for your child and other family members?	11/12 (91%) responses suggested that the prompt was clear.	4/12 (33%) responses suggested a negative emotional response to the question.	Some families need help remembering appointments.	How satisfied are you with remembering appointments for your child and other family members?
How well do you remember whom to contact for services?	10/11 (91%) responses suggested that the prompt was clear.	2/12 (16%) responses suggested a negative emotional response to the question.	Some families need help remembering who to contact for services (intensive behavioral therapy, occupational and speech therapy) for their child.	How satisfied are you with remembering whom to contact for services?
How well do you remember your child’s medication schedule?	12/12 (100%) responses suggested that the prompt was clear.	5/11 (45%) responses suggested a negative emotional response to the question.	Some families need help remembering their child’s medication schedule.	How satisfied are you with remembering your child’s medication schedule?
How familiar are you with credible internet sites regarding autism?	11/12 (91%) responses suggested that the prompt was clear.	0/11 (0%) responses suggested a negative emotional response to the question.	Some families use the internet to find information on autism and autism treatment.	How satisfied are you with locating credible internet sites regarding autism?

Family CAN: Family-Centered Autism Navigation.

Procedure

This project was deemed exempt as a quality improvement project by the Institutional Review Board at a University in the Midwest and did not require IRB approval.

Stage 1: Lean Launch methodology—discovery interviews

The purpose of the Lean Launch methdology is to gather customer and marketplace feedback quickly resulting in meaningful products and solutions (Udacity, n.d.). Discovery interviews are a quick systematic method to determine areas of specific need (Blank & Dorf, 2012). The interviews start with a general inquiry about pressing concerns with follow-up questions based upon participant responses. The initial prompt was, “What are your most significant challenges?” Follow-up questions assessed what makes this challenge so pressing and identified ways the participants addressed the challenge. Interview questions were hypothesis-driven and based on research conducted with caretakers of CSHCN. The questions facilitated conversation but did not suggest solutions.

Interviews and five feedback sessions with a cohort of discovery teams were used to provide feedback on our team’s minimal viable product (MVP), a basic product with enough features allowing for consumer evaluation (Udacity, n.d.). The discovery interview team consisted of an academic lead, a mentor, and an occupational therapy graduate student. Interviews were conducted during a 5-week period, and the individual interviews lasted between 20 and 90 min depending on interviewee responsiveness. After each interview, two team members reviewed and compared notes to ensure that the participants’ comments were accurately documented.

Stage 2: online survey and phone interview

The discovery team developed a semi-structured interview after a thorough review of the interview notes. Based on research by Pizur-Barnekow et al. (2011) and a client-centered philosophy (Law et al., 1996), the team developed initial Family CAN interview questions. Questions were evaluated by experts (i.e. parents of children diagnosed with ASD and care coordinators), via an online survey and a follow-up phone interview. The survey displayed the question stem, and the experts responded to open-ended question that asked them to (1) comment on the clarity of the stem (What does this question mean to you?), (2) comment on the importance of the stem (How important is this question?), and (3) reflect and report on their emotions when reading the question (How would it feel if you were asked about your performance or the importance of the question?). Constant comparative methods were used to categorize the experts’ narrative responses (Glaser, 1965).

Stage 3: PDSA cycle

Project leads on a state system improvement grant invited FNs at three sites to use the Family CAN during family navigation appointments. Two FNs at one site decided they would use the tool during family navigation appointments. FNs received the interview guide and manual before participating in a 1-h training on use of the Family CAN. The FNs used the interview guide with four families with children recently diagnosed with ASD. Quality improvement methods using PDSA cycles determined if the FNs would adopt the Family CAN as a part of their practice (Reed & Card, 2015). FNs responded to the following questions during the PDSA cycle: (1) What do you hope to learn from this cycle? (2) How will you know the changes are an improvement? and (3) What do you predict will happen?

Data analysis

The project team conducted post-interview debriefings and informal analysis of data collected during Stage 1 interviews. Written comments for Stage 2 were coded and analyzed by a team of three researchers (two graduate students and the principal investigator (PI)) using constant comparative methods (Glaser, 1965) over a 2-month period. The team coded written comments into the following categories: the participants identified if the question stem is clear or unclear, the participants restated the meaning of the question, the participants identified an emotional response to the questions, the participants recommended rewording of the question, or the participants’ responses required additional coding. Subsequently, two members of the research team met to review comments requiring additional coding. This team determined if the comments were generally positive remarks about the question stem, negative remarks about the question stem, an opinion statement, or unclear/ambiguous. The study team revised the Family CAN interview questions based upon the coded feedback from the experts.

Results

Stage 1: discovery interviews

Team feedback during Stage 1 indicated that FNs needed a product or tool to systematically identify challenges that caregivers experience upon learning of their child’s ASD diagnosis. The Stage 1 process resulted in Version 1 of the Family CAN interview questions (17 items) which were then evaluated in Stage 2 by parents of children diagnosed with ASD and care coordinators.

Stage 2: online survey and phone interviews

Participants evaluated question stems. The authors combined categories to represent that the respondents understood the question and added questions based upon survey and interview results. The final interview contained 29 questions.

Stage 3: PDSA cycle

The FNs who used the Family CAN in practice were parent-peer specialists employed by a parent-run support organization. FNs were trained to support caretakers of CSHCN, and they make intervention referrals based upon family needs. The FNs administered a hard copy of the interview in either single or multiple sessions, depending upon family communication style and detail of responses. The FNs indicated they would adopt the Family CAN in their practice and use the interview after an initial introductory visit designed to establish rapport with the family. Some caregivers found the rating system difficult, and the FNs recommended using a shorter Likert-type scale (i.e. 1–5) or using pictures or symbols instead of numbers.

Conclusion

The Family CAN semi-structured interview was developed using Lean Launch methodology, expert review, and PDSA cycles. This method of product design and development is a systematic practice resulting in a tool aimed at enhancing FN services following an ASD diagnosis. Comprehensive evidence-based FN services consist of key components including individually tailored, family-centered care coordination (Broder-Fingert et al., 2020). The Family CAN may fit well within a comprehensive FN program particularly when supporting families following an ASD diagnosis.

While these data suggest that FNs understand the interview and would use it to aid caretakers in navigating systems of care, the current project is limited and does not prove that implementation of the Family CAN leads to effective system navigation. Further, FN is designed to help underresourced families navigate systems of care, but our participants were educated and White and do not represent perspectives from target populations. Non-White or less educated families may find the Family CAN less helpful than the current population. Relatedly, the Likert-type responses were challenging for several participants and therefore adapted; further adaptation may be needed for low-resource/education populations. Another limitation is that the average age post-diagnosis of children whose parents participated in Stage 2 of the study was 12.3 years, suggesting that findings may be affected by recall bias.

Future research should investigate the usability and effectiveness of the Family CAN in underserved and underrepresented populations navigating systems of care to strengthen the validity of the interview with more diverse populations. More research is needed to refine the Family CAN with target populations followed by longitudinal controlled trial data to determine if implementation of the Family CAN leads to better system engagement outcomes for underserved families. Specifically, refinement of the rating system through systematic research may enhance the tool’s usability across a variety of populations.

Footnotes

Acknowledgements

The authors thank the National Science Foundation, Southeastern Wisconsin I-Corps Site: Enhancing Regional Technology Commercialization, and the HRSA funded Autism CARES State Systems Grant Program. We also thank Natalie Froemming and Alexandria Hagen for their assistance on this project.

Compliance with ethical standards

The current study utilized human participants and obtained informed consent from participants within the online survey. Participants were required to indicate that they were at least 18 years old and were participating voluntarily and no one would be penalized if they chose not to participate.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The authors received funding for Stage 1 of this study.

ORCID iD

Kris Pizur-Barnekow

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