Families of children with autism spectrum disorder (ASD) often experience challenges navigating multiple systems to access services. Family navigation (FN) is a model to provide information and support to access appropriate services. Few studies have been used to examine FN’s effectiveness for families of children with ASD. This study used mixed methods to (1) characterize FN services received by a sample of families in the Autism Treatment Network; (2) examine change in parent-reported activation, family functioning, and caregiver strain; and (3) explore families’ experiences with FN services.
Family characteristics and parent outcomes including parent activation, family functioning, and caregiver strain were collected from 260 parents in the Autism Treatment Network. Descriptive statistics and linear mixed models were used for aims 1 and 2. A subsample of 27 families were interviewed about their experiences with FN services to address aim 3.
Quantitative results for aims 1 and 2 revealed variability in FN services and improvement in parent activation and caregiver strain. Qualitative results revealed variability in family experiences on the basis of FN implementation differences (ie, how families were introduced to FN, service type, intensity, and timing) and whether they perceived improved skills and access to resources.
Findings suggest FN adaptations occur across different health care delivery systems and may result in highly variable initial outcomes and family experiences. Timing of FN services and case management receipt may contribute to this variability for families of children with ASD.
Family navigation (FN) is a promising model used to reduce health disparities for children with chronic health conditions. Little research has examined a widespread initiative to implement FN across multiple sites for children with autism spectrum disorder.
FN effectiveness is related to multiple factors such as service timing, family factors, case management, and service needs. We describe lessons learned from different FN models and provide recommendations for establishing and implementing FN for children with autism spectrum disorder.
Over the past decade, the rising prevalence of autism spectrum disorder (ASD) has overwhelmed service systems for families of children with ASD.1 Families often experience challenges navigating multiple systems and accessing needed services,2 contributing to high unmet need.3 Family navigation (FN), adapted from patient navigation, is a model to help families access services by facilitating service coordination, mentorship, and advocacy training.4 Few studies have been used to examine FN effectiveness for families of children with ASD.
Patient navigation models were first used to reduce disparities in cancer care by tailoring assistance to patients and caregivers.5 Initial models have been broadened to emphasize families, extend beyond the medical care system, and target other chronic conditions such as ASD. Feinberg et al6 were among the first to test FN with families of children at-risk for ASD.6 Findings indicated that children who received FN 1 week to 3 months postdiagnosis were more likely to receive an ASD diagnostic assessment than controls, and families showed improvement in social support and perceived stress but not patient activation.6 Authors of another study tested patient navigation for young children with ASD and found that those who obtained a navigator immediately after diagnosis had greater success scheduling and completing recommended appointments.7 These findings suggest that FN is associated with improved family outcomes and that FN timing is important but not well understood.
The Autism Speaks Autism Treatment Network (ATN), in collaboration with the Health Resources and Services Administration funded the Autism Intervention Research Network on Physical Health, which formed a combined network consisting of 12 sites across North America. In 2015, the ATN evaluated 17 290 children for ASD, diagnosed 5199 new cases of ASD, and provided care for 21 591 individuals with ASD. The ATN charged network sites with implementing FN, allowing sites to integrate FN within existing models of clinical care, thus anticipating variability. Given limited evidence on the effectiveness of specific FN models, funding limits, and institutional and geographic differences, sites were provided with summaries of existing literature on patient navigation and FN models and instructed to develop an FN program within the existing structure of clinical practice. As a result, sites implemented FN with variability in staff, types, amount, and timing of services. In Tables 1 and 2, we summarize FN service implementation across ATN sites and describe the difference between site groupings (eg, survey first and FN first). In this study, we used mixed methods to (1) characterize FN services received by a sample of families in the ATN; (2) examine change in parent-reported activation, family functioning, and caregiver strain; and (3) explore families’ experiences with FN services.
Contextual Information About FN Service Provision and Variability in Implementation in the ATN
| Institution | FN Services Models and Conceptualizations Across the Network |
|---|---|
| Site 1 | The family navigator provides referrals related to ASD services and resources, education, some advocacy, assistance to families regarding adjusting to ASD diagnosis, communication with community agencies, and updated information with local and regional resources. She also provides assistance to families in crisis and assists with abuse and/or neglect concerns. She is assisting with the training of a second family navigator in our program and supervised a master’s level student in her internship. |
| Site 2 | The family navigator serves many roles at our site. The family navigator acts as a guide to available clinical and research programs and resources at the local university. The family navigator also answers the Autism Resource Line, a helpline that allows families and professionals to find information about autism-related clinical, research, and outreach services. The family navigator offers available resources to community physicians, families, school personnel, and other community professionals by facilitating calls and e-mails. These resources include diagnostic evaluation services, school consultation, parent workshops, and professional training opportunities. The family navigator also assists in a number of research studies and serves as one of the cochairs for the FN committee with the ATN. The family navigator also serves an important role for families who are seen in the diagnostic clinic. This role includes creating resource packets that contain ATN tool kits and information on community resources for families, faxing reports to appropriate service providers, and connecting families with resources and services locally. |
| Site 3 | Families receive service, education, and resource navigation supports; families in need of additional education or counseling are referred to the autism clinic social worker. |
| Site 4 | Our primary family navigator provides initial psycho-education regarding the ASD diagnosis and then assists families in obtaining appropriate services. Our secondary family navigator does not have a mental health degree and is only able to assist with referrals. |
| Site 5 | The FN team provides a variety of services depending on the particular needs of the patient and the program through which services are being offered. There were 3 main family navigators, one a bachelor’s level social worker and resource coordinator, a licensed, master’s-trained social worker, and a certified and licensed, master’s-prepared board-certified behavior analyst. On a daily basis, navigators meet with families in the clinical setting to discuss resources related to educational, behavioral health, or community-support challenges. Families identifying with more in-depth needs may be referred for one-on-one counseling sessions to address challenges with accessing specific behavioral health or educational services. |
| Site 6 | Education, Care coordination, transition, and precare |
| Site 7 | Referral information and education (on diagnosis, available therapies, community agencies and how to apply, school issues, etc) |
| Site 8 | The social workers interact with close to 1000 families per year. The volunteer family navigator provides information, referral to family support organizations, education on how to work with school teams, and support to families at times of diagnosis and transition. The social workers participate in the above and work with families in greater need around resources, referrals to behavioral health services, and more traditional support provided by social workers. |
| Site 9 | Case management, crisis intervention, service recommendations and referrals, supportive counseling, advocacy, collaboration with internal and external providers, and transition education and/or services |
| Site 10 | Our family navigators provide individual consultation, case management, and care coordination in English, Spanish, and Vietnamese. Throughout 2015, our family navigators coordinated educational classes in English and Spanish (eg, autism education series) and one Vietnamese workshop. Our family navigators provide referrals to community resources and directly link families when needed. They engage in advocacy roles for families who encounter system barriers and try to empower families, so they can access services more independently in the future. They also offer informal counseling and parent support for newly diagnosed families who are coming to terms with the diagnosis. The center’s support group is facilitated by one of our family navigators. More recently, a family navigator is coordinating group events that provide education and family support specifically for Latino families. Finally, a family navigator coordinates informational sessions including community resources for families on the waiting list in English and Spanish several times a year. We also use our nurse and front office lead to assist families with medical issues and medication. They also help families to secure appropriate appointments. |
| Site 11 | There is a full-time family navigator position within the clinic, shared by 2 registered nurses. The family navigators provide a follow-up phone call one month after the family is seen by our autism assessment team to determine if the family is getting all needed services and to assist in overcoming any barriers. Families are encouraged to call back at any time for assistance in accessing services or to request additional information or support. For families managed by a developmental behavioral pediatrician, the family navigator performs a care manager function, answering questions, following-up regarding medication and appointments, and assisting with referrals. In addition to the family navigators’ direct work with families, the clinic also has an autism line in which we answer questions from members of the community and direct them to appropriate resources. The family navigators triage all calls to clinic to determine if the child should be seen by the autism assessment team or a developmental behavioral pediatrician. In addition, there is a nurse care manager–family navigator in the program as well. |
| Site 12 | After a diagnosis of ASD, every family meets with a social worker (within 4–6 weeks) who helps them with learning more about ASD, information about government services, referrals to services, assistance with funding if necessary, and assistance in finding programs and schools. The registered nurse provides service navigation/coordination to families in the psychopharmacology clinic. She monitors medication, side effects, liaises with schools and programs, and helps families find community supports. The ATN site coordinator provides help to families in the ATN and in the community in finding services, camps, programs, and resources. |
| Institution | FN Services Models and Conceptualizations Across the Network |
|---|---|
| Site 1 | The family navigator provides referrals related to ASD services and resources, education, some advocacy, assistance to families regarding adjusting to ASD diagnosis, communication with community agencies, and updated information with local and regional resources. She also provides assistance to families in crisis and assists with abuse and/or neglect concerns. She is assisting with the training of a second family navigator in our program and supervised a master’s level student in her internship. |
| Site 2 | The family navigator serves many roles at our site. The family navigator acts as a guide to available clinical and research programs and resources at the local university. The family navigator also answers the Autism Resource Line, a helpline that allows families and professionals to find information about autism-related clinical, research, and outreach services. The family navigator offers available resources to community physicians, families, school personnel, and other community professionals by facilitating calls and e-mails. These resources include diagnostic evaluation services, school consultation, parent workshops, and professional training opportunities. The family navigator also assists in a number of research studies and serves as one of the cochairs for the FN committee with the ATN. The family navigator also serves an important role for families who are seen in the diagnostic clinic. This role includes creating resource packets that contain ATN tool kits and information on community resources for families, faxing reports to appropriate service providers, and connecting families with resources and services locally. |
| Site 3 | Families receive service, education, and resource navigation supports; families in need of additional education or counseling are referred to the autism clinic social worker. |
| Site 4 | Our primary family navigator provides initial psycho-education regarding the ASD diagnosis and then assists families in obtaining appropriate services. Our secondary family navigator does not have a mental health degree and is only able to assist with referrals. |
| Site 5 | The FN team provides a variety of services depending on the particular needs of the patient and the program through which services are being offered. There were 3 main family navigators, one a bachelor’s level social worker and resource coordinator, a licensed, master’s-trained social worker, and a certified and licensed, master’s-prepared board-certified behavior analyst. On a daily basis, navigators meet with families in the clinical setting to discuss resources related to educational, behavioral health, or community-support challenges. Families identifying with more in-depth needs may be referred for one-on-one counseling sessions to address challenges with accessing specific behavioral health or educational services. |
| Site 6 | Education, Care coordination, transition, and precare |
| Site 7 | Referral information and education (on diagnosis, available therapies, community agencies and how to apply, school issues, etc) |
| Site 8 | The social workers interact with close to 1000 families per year. The volunteer family navigator provides information, referral to family support organizations, education on how to work with school teams, and support to families at times of diagnosis and transition. The social workers participate in the above and work with families in greater need around resources, referrals to behavioral health services, and more traditional support provided by social workers. |
| Site 9 | Case management, crisis intervention, service recommendations and referrals, supportive counseling, advocacy, collaboration with internal and external providers, and transition education and/or services |
| Site 10 | Our family navigators provide individual consultation, case management, and care coordination in English, Spanish, and Vietnamese. Throughout 2015, our family navigators coordinated educational classes in English and Spanish (eg, autism education series) and one Vietnamese workshop. Our family navigators provide referrals to community resources and directly link families when needed. They engage in advocacy roles for families who encounter system barriers and try to empower families, so they can access services more independently in the future. They also offer informal counseling and parent support for newly diagnosed families who are coming to terms with the diagnosis. The center’s support group is facilitated by one of our family navigators. More recently, a family navigator is coordinating group events that provide education and family support specifically for Latino families. Finally, a family navigator coordinates informational sessions including community resources for families on the waiting list in English and Spanish several times a year. We also use our nurse and front office lead to assist families with medical issues and medication. They also help families to secure appropriate appointments. |
| Site 11 | There is a full-time family navigator position within the clinic, shared by 2 registered nurses. The family navigators provide a follow-up phone call one month after the family is seen by our autism assessment team to determine if the family is getting all needed services and to assist in overcoming any barriers. Families are encouraged to call back at any time for assistance in accessing services or to request additional information or support. For families managed by a developmental behavioral pediatrician, the family navigator performs a care manager function, answering questions, following-up regarding medication and appointments, and assisting with referrals. In addition to the family navigators’ direct work with families, the clinic also has an autism line in which we answer questions from members of the community and direct them to appropriate resources. The family navigators triage all calls to clinic to determine if the child should be seen by the autism assessment team or a developmental behavioral pediatrician. In addition, there is a nurse care manager–family navigator in the program as well. |
| Site 12 | After a diagnosis of ASD, every family meets with a social worker (within 4–6 weeks) who helps them with learning more about ASD, information about government services, referrals to services, assistance with funding if necessary, and assistance in finding programs and schools. The registered nurse provides service navigation/coordination to families in the psychopharmacology clinic. She monitors medication, side effects, liaises with schools and programs, and helps families find community supports. The ATN site coordinator provides help to families in the ATN and in the community in finding services, camps, programs, and resources. |
Quantitative Sample Group Description
| Group Description | No. Sites and Participants per Group | |
|---|---|---|
| Survey first | Families in this subsample completed the baseline survey before receiving FN services at their site. | No. sites = 5; participant sample = 96 |
| FN first | Families in this subsample received some FN services before the baseline survey took place. | No. sites = 7; participant sample = 164 |
| Group Description | No. Sites and Participants per Group | |
|---|---|---|
| Survey first | Families in this subsample completed the baseline survey before receiving FN services at their site. | No. sites = 5; participant sample = 96 |
| FN first | Families in this subsample received some FN services before the baseline survey took place. | No. sites = 7; participant sample = 164 |
Methods
Quantitative methods were used to characterize FN services received (aim 1) and examine change in family outcomes (aim 2). In-depth interviews were conducted to gain insights into families’ experiences with FN services (aim 3). Institutional review board approval was granted at Massachusetts General Hospital and at each site.
Sampling, Recruitment, and Procedures: Aims 1 and 2
The quantitative sample was drawn from all 12 participating sites. Study coordinators approached families either immediately after their child received an ASD diagnosis or up to 3 months after diagnosis to invite participation. Eligibility criteria included (1) being a parent or primary caregiver of a child with ASD younger than age 12 who was diagnosed and/or assessed at an ATN site within 3 months of the consent date, (2) being able to complete assessments in English, and (3) providing informed consent. The preferred study protocol was to enroll families before receiving FN services. Several sites (n = 7) chose not to alter existing clinical practice because FN was already underway across the ATN. Consequently, families from those sites may have received FN services before study enrollment as part of usual care. Although this group of sites deviated from the research protocol, it presented an interesting opportunity to document variability in implementation processes (Table 1). Therefore, the sample was split into 2 groups: those who completed the baseline survey before receiving FN services (survey-first group) or those who received FN services before the baseline survey (FN-first group) (Fig 1). For aims 1 and 2, 260 participants enrolled across 12 ATN sites.
An encounter form was completed by family navigators to track the type of FN services provided, service date, service length, and delivery mode. Follow-up questionnaires were electronically administered to parents 45 to 60 days after the initial FN encounter (survey-first group) or consent date (FN-first group).
Quantitative Measures
Demographics
Study staff collected a baseline demographic questionnaire self-reported by parents, which included age, income, postal code, location (eg, rural, suburban, urban), race and/or ethnicity, parent education, language, service access, and the child’s medical history.
Encounters and Services
Information on FN services, intensity, and referrals made were captured (Table 3). The encounter form was generated through consensus among a network-wide FN committee.
FN Encounters, FN Services, and Referrals Received by Group
| Survey First (N = 96), n (%) | FN First (N = 164), n (%) | |
|---|---|---|
| No. FN encounters after consent | ||
| 0 | 6 (6.3) | 32 (19.5) |
| 1 | 68 (70.8) | 49 (29.9) |
| 2 | 4 (4.2) | 36 (22.0) |
| 3 | 5 (5.2) | 28 (17.1) |
| 4 | 3 (3.1) | 9 (5.5) |
| 5 | 3 (3.1) | 6 (3.7) |
| 6 | 3 (3.1) | 3 (1.8) |
| 7 | 1 (1.0) | 0 (0.0) |
| 8 | 2 (2.1) | 1 (0.6) |
| 12 | 1 (1.0) | 0 (0.0) |
| FN services provided during encounters | ||
| Information and/or educational resources | 64 (67) | 109 (66) |
| Case management | 30 (31) | 49 (30 |
| Crisis intervention | — | 12 (6) |
| Doctor follow-ups | 15 (16) | 48 (29) |
| How to work with regional center or similar coordinating program | 33 (34) | 55 (34) |
| Referrals | 48 (50) | 119 (73) |
| Assistance with school or education system (eg, individualized education plan, placement) | 50 (52) | 44 (27) |
| Support services (eg, active listening) | 77 (80) | 134 (82) |
| Other | 23 (24) | 54 (33) |
| Referrals resulting from FN services | ||
| ASD services (eg, applied behavior analysis, floor time) | 38 (40) | 64 (39) |
| Formal assessments | 1 (1) | 6 (4) |
| Educational advocacy | 13 (14) | 18 (11) |
| Financial (eg, gas and/or electric bill payment, rent payment, etc) | 5 (5) | 10 (6) |
| Pantry and/or food programs | 1 (1) | 2 (1) |
| Legal | — | 2 (1) |
| Medical | 6 (6) | 12 (7) |
| Occupational therapy | 6 (6) | 23 (14) |
| Speech therapy | 5 (5) | 33 (20) |
| Other | 19 (20) | 88 (54) |
| Survey First (N = 96), n (%) | FN First (N = 164), n (%) | |
|---|---|---|
| No. FN encounters after consent | ||
| 0 | 6 (6.3) | 32 (19.5) |
| 1 | 68 (70.8) | 49 (29.9) |
| 2 | 4 (4.2) | 36 (22.0) |
| 3 | 5 (5.2) | 28 (17.1) |
| 4 | 3 (3.1) | 9 (5.5) |
| 5 | 3 (3.1) | 6 (3.7) |
| 6 | 3 (3.1) | 3 (1.8) |
| 7 | 1 (1.0) | 0 (0.0) |
| 8 | 2 (2.1) | 1 (0.6) |
| 12 | 1 (1.0) | 0 (0.0) |
| FN services provided during encounters | ||
| Information and/or educational resources | 64 (67) | 109 (66) |
| Case management | 30 (31) | 49 (30 |
| Crisis intervention | — | 12 (6) |
| Doctor follow-ups | 15 (16) | 48 (29) |
| How to work with regional center or similar coordinating program | 33 (34) | 55 (34) |
| Referrals | 48 (50) | 119 (73) |
| Assistance with school or education system (eg, individualized education plan, placement) | 50 (52) | 44 (27) |
| Support services (eg, active listening) | 77 (80) | 134 (82) |
| Other | 23 (24) | 54 (33) |
| Referrals resulting from FN services | ||
| ASD services (eg, applied behavior analysis, floor time) | 38 (40) | 64 (39) |
| Formal assessments | 1 (1) | 6 (4) |
| Educational advocacy | 13 (14) | 18 (11) |
| Financial (eg, gas and/or electric bill payment, rent payment, etc) | 5 (5) | 10 (6) |
| Pantry and/or food programs | 1 (1) | 2 (1) |
| Legal | — | 2 (1) |
| Medical | 6 (6) | 12 (7) |
| Occupational therapy | 6 (6) | 23 (14) |
| Speech therapy | 5 (5) | 33 (20) |
| Other | 19 (20) | 88 (54) |
—, not applicable.
Three family outcomes, patient activation, family functioning, and caregiver strain, were assessed via questionnaire at baseline and follow-up.
Parent Activation Measure for Developmental Disabilities
The Parent Activation Measure for Developmental Disabilities is a 13-item scale assessing parent knowledge, skill, and confidence for child self-management that is based on the original Patient Activation Measure.8 The Parent Activation Measure for Developmental Disabilities also includes a 1-to-4 scale indicating parents’ activation level (higher scores indicating greater activation). Improvement was defined as a 1-point increase in parent activation scores between the baseline and follow-up assessment.
Family Assessment Device
This study used the General Family Functioning Subscale of the Family Assessment Device consisting of 12 statements rated from strongly agree1 to strongly disagree.4,9 A higher mean score indicated poorer family functioning. Because a score of ≥2 is considered problematic, improvement was defined as moving from problematic to not problematic in the study period.
Caregiver Strain Questionnaire
The Caregiver Strain Questionnaire (CGSQ) is a 21-item scale developed for families of children with emotional and behavioral disorders.10 A total (global) score and 3 subscores (objective, internalizing, externalizing) are produced. CGSQ improvement was defined as a decrease of 1 point or more or no increase on any of the subscales in the study period, with lower scores indicating less caregiver strain.
Sampling, Recruitment, and Procedures: Aim 3
A convenience subsample of 27 families was recruited for the qualitative study portion. Nine sites contributed data, with at least 2 interviews per site. To be eligible, parents had to (1) have participated in the quantitative study and (2) have elected to be recontacted for an interview. The research team contacted interested families and obtained verbal consent. Two research staff conducted 30-minute telephone interviews using a semistructured interview guide addressing FN effectiveness, cross-system relationships, FN services’ influence, barriers, and improvement areas. Participants were paid $25. All interviews were recorded and transcribed verbatim by a contracted agency and reviewed for accuracy by study staff.
Analyses
Aims 1 and 2 Analyses
Descriptive and bivariate analyses were completed for all demographic, predictor, and outcome variables. Quantitative analyses were conducted separately for each group. For family outcomes, baseline to follow-up changes were assessed by using a linear mixed model with follow-up level as the outcome, baseline level as a predictor, and site as a random factor. Reported estimates reveal change from baseline to follow-up with an SE. We also assessed possible predictors (ie, parent education, number of encounters, case management services, school services, and information services) for Parent Activation Measure, Family Assessment Device, and CGSQ improvement in post hoc multivariable logistic regressions. Only statistically significant associations are reported.
Aim 3 Analysis
The framework approach was used to identify themes in NVivo 11 by 2 trained staff members (M.K.C. and O.J.L.) who completed each phase (ie, data management, identifying and testing a thematic framework, and descriptive and explanatory accounts) independently.11 Themes and subthemes were identified and refined to best represent the data and reach final consensus. Illustrative quotes were then selected.
Results
Most of the sample was insured: 3.3% of the survey-first group and 7.8% of the FN-first samples were uninsured. Annual family incomes ranged from <$30 000 to >$75 000, with the largest portion of families making >$75 000 (survey first = 45.1%; FN first = 30.3%). Families were well educated, with >85% having completed at least some college. There were no discernable differences in demographic characteristics between those without baseline or follow-up assessment data for either group (see Table 4).
Demographic Characteristics and Outcomes for the Entire Sample
| Measure | Survey First (N = 96) | FN First (N = 164) | Qualitative Sample (N = 28) | Overall ATN in 2015 (N = 21 591) |
|---|---|---|---|---|
| Participant relationship to child, n (%) | ||||
| Mother | 78 (83.9) | 135 (87.7) | 22 (78.6) | — |
| Father | 15 (16.1) | 12 (7.8) | 5 (17.9) | — |
| Grandparent | 0 (0.0) | 4 (2.6) | 1 (3.6) | — |
| Other legal guardian | 0 (0.0) | 3 (1.9) | — | — |
| Caregiver age at baseline assessment, y, mean (SD) | 35.4 (5.8) | 35.7 (7.2) | — | — |
| Caregiver sex (female), n (%) | 78 (83.9) | 141 (91.6) | 23 (82.1) | — |
| Race, n (%) | ||||
| Asian | 7 (7.6) | 12 (8.1) | 5.2 | 5.2 |
| Black | 14 (15.2) | 8 (5.4) | 11.9 | 11.9 |
| White | 60 (65.2) | 113 (75.8) | 70.4 | 70.4 |
| Other or multiracial | 11 (12.0) | 16 (10.7) | 12.5 | 12.5 |
| Ethnicity, n (%) | ||||
| Latino or Hispanic origin or descent | 1 (1.4) | 25 (18.1) | 21 | 21 |
| Not of Latino or Hispanic origin or descent | 71 (98.6) | 113 (81.9) | 79 | 79 |
| Education level, n (%) | ||||
| Less than high school | 4 (4.3) | 6 (3.9) | 1 (3.5) | — |
| High school diploma | 14 (15.2) | 22 (14.3) | 5 (17.8) | — |
| Some college | 29 (31.5) | 52 (33.8) | 6 (21.4) | — |
| Bachelor’s degree | 21 (22.8) | 45 (29.2) | 9 (21.4) | — |
| Technical, vocational school, or other | 8 (8.7) | 8 (5.2) | 1 (3.5) | — |
| Graduate degree | 16 (17.4) | 21 (13.6) | 6 (21.4) | — |
| Income level, n (%) | ||||
| < $30 000 | 15 (18.3) | 37 (25.5) | — | — |
| $30 000–$45 000 | 11 (13.4) | 23 (15.9) | — | — |
| $45 001–$55 000 | 3 (3.7) | 10 (6.9) | — | — |
| $55 001–$75 000 | 16 (19.5) | 31 (21.4) | — | — |
| >$75 000 | 37 (45.1) | 44 (30.3) | — | — |
| Insured, n (%) | ||||
| No | 3 (3.3) | 12 (7.8) | — | — |
| Yes | 89 (96.7) | 142 (92.2) | — | — |
| Outcomes | ||||
| Parent activation level (baseline), mean (SD) | 63.36 (14.31) | 62.81 (12.07) | — | — |
| Level 1, n (%) | 11 (12.1) | 12 (8.4) | — | — |
| Level 2, n (%) | 18 (19.8) | 26 (16.9) | — | — |
| Level 3, n (%) | 35 (38.5) | 77 (50) | — | — |
| Level 4, n (%) | 27 (29.7) | 38 (24.7) | — | — |
| Family functioning (problematic baseline) , n (%) | 33 (35.5) | 51 (33.3) | — | — |
| Caregiver strain (baseline), mean (SD) | ||||
| Global score | 7.14 (2.01) | 7.15 (1.93) | — | — |
| Externalizing strain | 1.88 (0.58) | 1.74 (0.56) | — | — |
| Internalizing strain | 2.95 (0.97) | 2.94 (0.89) | — | — |
| Objective strain | 2.31 (0.84) | 2.45 (0.90) | — | — |
| Measure | Survey First (N = 96) | FN First (N = 164) | Qualitative Sample (N = 28) | Overall ATN in 2015 (N = 21 591) |
|---|---|---|---|---|
| Participant relationship to child, n (%) | ||||
| Mother | 78 (83.9) | 135 (87.7) | 22 (78.6) | — |
| Father | 15 (16.1) | 12 (7.8) | 5 (17.9) | — |
| Grandparent | 0 (0.0) | 4 (2.6) | 1 (3.6) | — |
| Other legal guardian | 0 (0.0) | 3 (1.9) | — | — |
| Caregiver age at baseline assessment, y, mean (SD) | 35.4 (5.8) | 35.7 (7.2) | — | — |
| Caregiver sex (female), n (%) | 78 (83.9) | 141 (91.6) | 23 (82.1) | — |
| Race, n (%) | ||||
| Asian | 7 (7.6) | 12 (8.1) | 5.2 | 5.2 |
| Black | 14 (15.2) | 8 (5.4) | 11.9 | 11.9 |
| White | 60 (65.2) | 113 (75.8) | 70.4 | 70.4 |
| Other or multiracial | 11 (12.0) | 16 (10.7) | 12.5 | 12.5 |
| Ethnicity, n (%) | ||||
| Latino or Hispanic origin or descent | 1 (1.4) | 25 (18.1) | 21 | 21 |
| Not of Latino or Hispanic origin or descent | 71 (98.6) | 113 (81.9) | 79 | 79 |
| Education level, n (%) | ||||
| Less than high school | 4 (4.3) | 6 (3.9) | 1 (3.5) | — |
| High school diploma | 14 (15.2) | 22 (14.3) | 5 (17.8) | — |
| Some college | 29 (31.5) | 52 (33.8) | 6 (21.4) | — |
| Bachelor’s degree | 21 (22.8) | 45 (29.2) | 9 (21.4) | — |
| Technical, vocational school, or other | 8 (8.7) | 8 (5.2) | 1 (3.5) | — |
| Graduate degree | 16 (17.4) | 21 (13.6) | 6 (21.4) | — |
| Income level, n (%) | ||||
| < $30 000 | 15 (18.3) | 37 (25.5) | — | — |
| $30 000–$45 000 | 11 (13.4) | 23 (15.9) | — | — |
| $45 001–$55 000 | 3 (3.7) | 10 (6.9) | — | — |
| $55 001–$75 000 | 16 (19.5) | 31 (21.4) | — | — |
| >$75 000 | 37 (45.1) | 44 (30.3) | — | — |
| Insured, n (%) | ||||
| No | 3 (3.3) | 12 (7.8) | — | — |
| Yes | 89 (96.7) | 142 (92.2) | — | — |
| Outcomes | ||||
| Parent activation level (baseline), mean (SD) | 63.36 (14.31) | 62.81 (12.07) | — | — |
| Level 1, n (%) | 11 (12.1) | 12 (8.4) | — | — |
| Level 2, n (%) | 18 (19.8) | 26 (16.9) | — | — |
| Level 3, n (%) | 35 (38.5) | 77 (50) | — | — |
| Level 4, n (%) | 27 (29.7) | 38 (24.7) | — | — |
| Family functioning (problematic baseline) , n (%) | 33 (35.5) | 51 (33.3) | — | — |
| Caregiver strain (baseline), mean (SD) | ||||
| Global score | 7.14 (2.01) | 7.15 (1.93) | — | — |
| Externalizing strain | 1.88 (0.58) | 1.74 (0.56) | — | — |
| Internalizing strain | 2.95 (0.97) | 2.94 (0.89) | — | — |
| Objective strain | 2.31 (0.84) | 2.45 (0.90) | — | — |
ATN data were collected from the period of January 1, 2015, to December 31, 2015, from 14 sites. Two of the 14 were not included in the current study because they were no longer participating in the ATN during the study period. The ASD patent population (N = 21 591) includes the total number of patients with ASD served including the number of children with a new ASD diagnoses and the number of children with ASD that were seen for continuing medical care.
—, not applicable.
Aim 1: Characteristics of FN Services
Descriptive statistics revealed variability in the intensity of FN encounters with a range of 0 to 8 encounters in the FN-first group (majority between 0 and 3). Almost 20% in the FN-first group reported 0 FN encounters after the baseline assessment, likely because of receiving FN services before the baseline assessment; however, 51% of subjects received >1 encounter between baseline and follow-up. (Only FN services that occurred between the baseline and follow-up assessment were captured.) The range of encounters in the survey-first group was 0 to 12 with 71% of participants receiving 1 encounter (71%) and 23% with >1 encounter (Table 3).
Seventy-six percent of parents in the FN-first group received at least 1 referral (mean = 1.89; SD = 1.65). The mean number of services for this group was 3.97 (SD = 1.6; interquartile range = 3.0–5.0). The mean number of services received by the survey-first group was 3.66 (SD = 1.34; interquartile range = 3.0–4.0). Fifty-two percent of parents in this group received at least 1 referral (mean = 1.09; SD = 1.36).
Aim 2: Change in Parent Outcomes
Parent Activation
Significant parent activation improvement was present for the FN-first group (β = 3.06; SE = 1.15; P = .012). Case management services were associated with patient activation improvement (odds ratio = 2.94; P = .01) in the FN-first group.
Family Functioning
No statistically significant change was found for either group.
Caregiver Strain
There were no statistically significant improvements in overall caregiver strain for either group. There was a significant decrease in internalizing strain for the survey-first group (β = −.29; SE = 0.01; P = .006) and the FN-first group (β = −.18; SE = 0.07; P = .012). There were no significant associations between FN services and caregiver strain (Table 5).
Regression Models for Change in Parent Outcomes
| Change in Parent Outcomes From Baseline to Follow-up | ||||||
|---|---|---|---|---|---|---|
| Survey First | FN First | |||||
| Estimate (SD) | CI (95%) | P | Estimate (SD) | CI (95%) | P | |
| Parent outcomes | ||||||
| Parent activation level | 2.15 (1.66) | (−1.93 to 6.22) | .17 | 3.06 (1.15) | (0.28 to 5.85) | .012* |
| Family functioning | −0.06 (0.05) | (−0.18 to 0.06) | .18 | 0.002 (0.04) | (−0.09 to 0.09) | .40 |
| Caregiver strain | ||||||
| Global score | −0.36 (0.19) | (−0.84 to 0.12) | .07 | −0.29 (0.15) | (−0.65 to 0.06) | .06 |
| Externalizing strain | −0.07 (0.06) | (−0.19 to 0.05) | .20 | −0.01 (0.05) | (−0.11 to 0.08) | .38 |
| Internalizing strain | −0.29 (0.10) | (−0.49 to −0.10) | .006** | −0.18 (0.07) | (−0.31 to −0.05) | .012* |
| Objective strain | 0.01 (0.09) | (−0.18 to 0.19) | .40 | −0.10 (0.06) | (−0.22 to 0.01) | .08 |
| Change in Parent Outcomes From Baseline to Follow-up | ||||||
|---|---|---|---|---|---|---|
| Survey First | FN First | |||||
| Estimate (SD) | CI (95%) | P | Estimate (SD) | CI (95%) | P | |
| Parent outcomes | ||||||
| Parent activation level | 2.15 (1.66) | (−1.93 to 6.22) | .17 | 3.06 (1.15) | (0.28 to 5.85) | .012* |
| Family functioning | −0.06 (0.05) | (−0.18 to 0.06) | .18 | 0.002 (0.04) | (−0.09 to 0.09) | .40 |
| Caregiver strain | ||||||
| Global score | −0.36 (0.19) | (−0.84 to 0.12) | .07 | −0.29 (0.15) | (−0.65 to 0.06) | .06 |
| Externalizing strain | −0.07 (0.06) | (−0.19 to 0.05) | .20 | −0.01 (0.05) | (−0.11 to 0.08) | .38 |
| Internalizing strain | −0.29 (0.10) | (−0.49 to −0.10) | .006** | −0.18 (0.07) | (−0.31 to −0.05) | .012* |
| Objective strain | 0.01 (0.09) | (−0.18 to 0.19) | .40 | −0.10 (0.06) | (−0.22 to 0.01) | .08 |
CI, confidence interval.
P < .05.
P < .01.
***P < .001.
Aim 3: Qualitative Interview Results
Three interrelated themes and 11 subthemes were identified (Fig 2). Contextual, environmental, and family factors contributed to FN variability, together influencing skills and resources gained by parents. All themes explained parents’ perspectives of the extent to which their needs were met through FN services (Table 6).
Conceptual model depicting factors that influenced familiesʼ perceptions of whether their needs were met and the helpfulness of FN services within the ATN.
Conceptual model depicting factors that influenced familiesʼ perceptions of whether their needs were met and the helpfulness of FN services within the ATN.
Factors Influencing Families’ Perceptions of Whether Their Needs Were Met and the Helpfulness of FN Services Within the ATN and Illustrative Quotes
| Subthemes | Illustrative Quotes |
|---|---|
| Theme 1: variability in FN services | |
| Awareness of a family navigator and the services and supports available | “My challenges are, I guess, not having anybody to work with. Just trying to navigate things…everything is trial and error, you sink or swim trying to sort out support services.” |
| “To have them there after that when I totally felt overwhelmed… just having someone there to listen to you and your concerns— reassuring you that everything is going to be okay, and they’re going to help you. You are not alone.” | |
| “I just wish I knew more information…for the navigators to be more clear and concise about what the entire study is about and what they could do to help in general…More detailed specifics or examples of things that they could do.” | |
| Type, intensity, and timing of services | “We did not have very many interactions…I met her one time when she gave me the paperwork.” |
| “It was very comforting afterwards to have somebody there that was able to help you, in a way, feel better. They’re very comforting. You feel this reassurance that somebody’s there, and you are not alone, and that all this is going to be okay.” | |
| “…going through the diagnosis and everything, it’s kind of a traumatic time. It’s really hard to start thinking and processing what you’re gonna do on that exact day. You really need some time to process it. The [family navigator] that I talked to on the phone, it was after some time, so it was a lot easier for us to start looking at options.” | |
| “The diagnosis did not come as a shock… Because we were very much expecting it, I just wanted to go full speed ahead…I didn’t need the calm, I needed forward motion… I think that if you’re not expecting the diagnosis, forward motion is overwhelming. [The family navigators] have learned this and so they are very good at easing people through the grief process. I was just done and through that, and ready to do something. | |
| Theme 2: skills and resources gained by parents | |
| Awareness of, and ability to access, educational, community, medical, and mental health services | “I think I have a much better understanding of how the system works, and what type of language to use, because a lot of the time they’re looking for specific jargon that I wouldn’t otherwise know. That’s been particularly helpful.” |
| Coping and support | “That there is another community out there that is going through the same thing you’re going through. It’s amazing. It’s just a great sense of reassurance that I cannot even explain how thankful I am to them.” |
| Theme 3: family, contextual, and environmental factors | |
| Family factors | |
| Preparedness for diagnosis, existing support and knowledge about ASD | “It didn’t really make a difference for us, I’m sorry to say…I think that for someone who’s not expecting a diagnosis, they did a lot of wise things… I was just a little different. Sort of the calm coddling just made me more insane.” |
| “I’ll tell ya, just having her there, somebody that I can contact if I’ve got questions or I need a direction… just knowing that she’s there makes me feel a lot better. Everything is so overwhelming when we got the diagnosis and the information...if I really have something that I don’t understand or I’m really confused about, I can give her a call and I’m sure she’ll be able to help me.” | |
| Contextual and environmental factors | |
| Case management | “There ought to have been a phone call or something saying, “Hey, we’re here to help. We hear you’ve been asked to get a neuropsych, and floor time services, let us help you. Here are our list of providers we recommend. We can’t endorse them, but here’s, nevertheless, a list of providers. This is your insurance, and we know these people take your insurance. Anything like that would’ve been helpful. I spent, I don’t know, 40 to 80 hours on the phone with people, between my insurance, and potential providers, tracking these things down.” |
| “It’s just a wall, always having to fight and argue to get access to the funding or get access for the processing time, or if a person to interact with you or call you back, or let you have feedback with status update on your file or what’s going on.” | |
| Insurance coverage | “Finding somebody who would do it (formal neuropsychological evaluation), then, finding somebody my insurance would cover who would do it, and then, getting my insurance to agree to cover it. Also, to find somebody who would do it in a timely fashion. I had several places that were covered by my insurance who could do it in 6 to 9, or 12 to 18 months.” |
| Time | “How long it takes to get a neuropsych is crazy, or even just to see the developmental pediatrician, by the way, is 6 to 9 months, to even then get referred for the neuropsych.” |
| “All of our actions, at that point, consisted of trying to find somebody who could do the neuropsych in less than a year, and getting that lined up, and getting our insurance to pay for it.” | |
| Availability of services | “It’s just there’s not a whole lot where I live. It wasn’t that they weren’t trying. There’s just nothing here. There’s not a whole lot of resources out there for the middle class, upper-middle class people that work. There’re just not any resources. Any grants or anything to help pay because they assume that if you work you have money, you have insurance.” |
| Subthemes | Illustrative Quotes |
|---|---|
| Theme 1: variability in FN services | |
| Awareness of a family navigator and the services and supports available | “My challenges are, I guess, not having anybody to work with. Just trying to navigate things…everything is trial and error, you sink or swim trying to sort out support services.” |
| “To have them there after that when I totally felt overwhelmed… just having someone there to listen to you and your concerns— reassuring you that everything is going to be okay, and they’re going to help you. You are not alone.” | |
| “I just wish I knew more information…for the navigators to be more clear and concise about what the entire study is about and what they could do to help in general…More detailed specifics or examples of things that they could do.” | |
| Type, intensity, and timing of services | “We did not have very many interactions…I met her one time when she gave me the paperwork.” |
| “It was very comforting afterwards to have somebody there that was able to help you, in a way, feel better. They’re very comforting. You feel this reassurance that somebody’s there, and you are not alone, and that all this is going to be okay.” | |
| “…going through the diagnosis and everything, it’s kind of a traumatic time. It’s really hard to start thinking and processing what you’re gonna do on that exact day. You really need some time to process it. The [family navigator] that I talked to on the phone, it was after some time, so it was a lot easier for us to start looking at options.” | |
| “The diagnosis did not come as a shock… Because we were very much expecting it, I just wanted to go full speed ahead…I didn’t need the calm, I needed forward motion… I think that if you’re not expecting the diagnosis, forward motion is overwhelming. [The family navigators] have learned this and so they are very good at easing people through the grief process. I was just done and through that, and ready to do something. | |
| Theme 2: skills and resources gained by parents | |
| Awareness of, and ability to access, educational, community, medical, and mental health services | “I think I have a much better understanding of how the system works, and what type of language to use, because a lot of the time they’re looking for specific jargon that I wouldn’t otherwise know. That’s been particularly helpful.” |
| Coping and support | “That there is another community out there that is going through the same thing you’re going through. It’s amazing. It’s just a great sense of reassurance that I cannot even explain how thankful I am to them.” |
| Theme 3: family, contextual, and environmental factors | |
| Family factors | |
| Preparedness for diagnosis, existing support and knowledge about ASD | “It didn’t really make a difference for us, I’m sorry to say…I think that for someone who’s not expecting a diagnosis, they did a lot of wise things… I was just a little different. Sort of the calm coddling just made me more insane.” |
| “I’ll tell ya, just having her there, somebody that I can contact if I’ve got questions or I need a direction… just knowing that she’s there makes me feel a lot better. Everything is so overwhelming when we got the diagnosis and the information...if I really have something that I don’t understand or I’m really confused about, I can give her a call and I’m sure she’ll be able to help me.” | |
| Contextual and environmental factors | |
| Case management | “There ought to have been a phone call or something saying, “Hey, we’re here to help. We hear you’ve been asked to get a neuropsych, and floor time services, let us help you. Here are our list of providers we recommend. We can’t endorse them, but here’s, nevertheless, a list of providers. This is your insurance, and we know these people take your insurance. Anything like that would’ve been helpful. I spent, I don’t know, 40 to 80 hours on the phone with people, between my insurance, and potential providers, tracking these things down.” |
| “It’s just a wall, always having to fight and argue to get access to the funding or get access for the processing time, or if a person to interact with you or call you back, or let you have feedback with status update on your file or what’s going on.” | |
| Insurance coverage | “Finding somebody who would do it (formal neuropsychological evaluation), then, finding somebody my insurance would cover who would do it, and then, getting my insurance to agree to cover it. Also, to find somebody who would do it in a timely fashion. I had several places that were covered by my insurance who could do it in 6 to 9, or 12 to 18 months.” |
| Time | “How long it takes to get a neuropsych is crazy, or even just to see the developmental pediatrician, by the way, is 6 to 9 months, to even then get referred for the neuropsych.” |
| “All of our actions, at that point, consisted of trying to find somebody who could do the neuropsych in less than a year, and getting that lined up, and getting our insurance to pay for it.” | |
| Availability of services | “It’s just there’s not a whole lot where I live. It wasn’t that they weren’t trying. There’s just nothing here. There’s not a whole lot of resources out there for the middle class, upper-middle class people that work. There’re just not any resources. Any grants or anything to help pay because they assume that if you work you have money, you have insurance.” |
Theme 1: Variation in FN Services
FN services varied widely. The following subthemes contributed to the perceived helpfulness of FN and whether needs were met: (1) variability in awareness of a family navigator and FN services received and (2) variability in the intensity, type, and timing of FN services.
Awareness of a Family Navigator and the Services Provided
Some families were unaware they had a family navigator. This may have been due to sites using different FN titles (eg, social worker, nurse) and/or parent confusion because they interacted with many providers. Other families knew their family navigator but did not have much information about the services this individual could provide.
Variability in FN Service Intensity, Type, and Timing
Differences in the intensity, type, and timing of services emerged as important factors. Parents’ perspectives varied on the basis of family factors, such as their preparedness for diagnosis, existing support, and knowledge of ASD. Some families reported receiving many services, whereas others received limited services. Often, parents expressed that having limited encounters with navigators was less helpful. In contrast, some families felt that the intensity and type of encounters with navigators was not as important as simply knowing someone was available to support them. Timing was an important subtheme as families expressed different preferences for receiving FN services immediately after diagnoses or after some time passed.
Theme 2: Variability in Parent Skills and Resources Gained
Parents’ perceptions of the skills and resources they gained through FN services arose as the second theme. Among those parents reporting gains in skills and resources, the following subthemes emerged: (1) awareness of, and ability to access, educational, community, medical, and mental health services and (2) coping mechanisms and support.
Awareness of, and Ability To Access, Educational, Community, Medical, and Mental Health Services
Some families felt that they learned about how to access potential supports and resources in different settings, whereas others did not.
Coping Mechanisms and Support
Most families who reported awareness of their family navigator reported learning about a broader community of families who shared similar experiences, including some of the family navigators who were parents themselves, which offered a mechanism for coping and support.
Theme 3: Family, Contextual, and Environmental Factors Contributed to FN Experiences
Family, contextual, and environmental factors contributed to families’ abilities to access services, which may have influenced their overall perception of the helpfulness of the FN and family satisfaction.
Family Factors
Parents’ perceptions were, in part, based on their own personal circumstances and needs (eg, parent preparedness for child’s diagnosis). Those parents with more personal resources and knowledge about the child’s diagnosis felt that the FN was less helpful, whereas other parents felt overwhelmed and in need of FN support.
Contextual and Environmental Factors
Case management, insurance coverage, time, and availability of specialty services emerged as influential to parents’ FN perceptions. These 4 subthemes often emerged together (Table 4).
Parents in this sample identified case management as a major need but experienced a lack of case management. Parents felt that there should have been additional information about services and how to connect to each service without having to follow-up and advocate for services individually.
Insurance inadequacy was raised by many parents as a challenge to accessing services, contributing to their perceptions of FN services. One parent explained how inadequate insurance challenged the receipt of a timely neuropsychological evaluation and services for her child because of the type of services offered and the timeliness of services covered by insurance. Waitlists to receive a formal evaluation, referrals, and services were also identified as challenging for families.
There was large variation in parent-reported service availability on the basis of location (eg, rural, suburban), which also influenced the perceived utility of FN services among parents. Although family navigators appeared to support families regardless of location, lack of specialty service availability caused a poorer perception of FN.
Discussion
This study was designed to provide a description of FN services for families of children with ASD and examine the early impact of FN by collecting quantitative and qualitative data on family experiences. Quantitative findings suggest there is variability in the intensity of FN services and that the FN-first group revealed small improvement in parent activation and internalizing caregiver strain, whereas the survey-first group revealed decreased internalizing caregiver strain only. Qualitative findings suggest families’ experiences with FN services varied on the basis of whether families knew about the family navigator and FN services, as well as the timing, intensity, and type of FN services received. In addition, their experiences differed on the basis of whether they felt they gained skills and resources. Perspectives were also influenced by family, contextual, and environmental factors.
Together, these findings point to challenges and positive outcomes resulting in various models of FN across network sites. Although Broder-Fingert et al12 have started to define FN implementation using process mapping and qualitative inquiry, to date, a clear definition of FN for families of children with ASD has not been published. Consequently, FN services in the ATN were not explicitly defined or prescribed, allowing variability and flexibility in implementation. In this study, we intended to examine a naturally occurring FN program across ATN sites to characterize variability in service models, change in parent-reported outcomes, and families’ experiences.
The qualitative data suggest that FN services were not always clearly described or well known by families, which may be a possible explanation for the limited change over time in parent-reported outcomes in the quantitative findings. In addition, families expressed the need for case management. Only 30% of the FN-first group received case management during their FN encounter(s), yet case management services were associated with improvement in parent activation for this group. It is possible that because FN happened so close to diagnosis, there was less focus on case management. However, variability in terminology and overlap in service type may have contributed to this low percentage. For example, family navigators at some sites may have reported providing “case management services,” whereas others reported the same service as “assistance with school/education system services.” Further attention must be paid to defining and measuring case management as an FN service because the term is broad and may capture a range of responsibilities.
In this study, we found evidence of improved parent activation for families in the FN-first group, which was not consistent with previous work by Feinberg et al.6 In our sample, families who received FN before the baseline assessment reported improved activation during this time, reinforcing the importance of including this outcome in future research on FN for this population. It is also possible that more activated parents were more likely to seek out FN services and be more engaged at all time points and therefore more likely to receive and report benefit from FN services.
Timing of FN services proved to be an important theme in the qualitative data, such that families had different preferences about receiving FN services either immediately after a diagnosis or after some time had passed. The quantitative data also point to the importance of timing. Improvement in parent activation was only shown for families at sites that did not alter clinical flow, thus providing FN services when necessary regardless of research protocol. Existing research has revealed that receipt of navigation at the time of diagnosis results in success scheduling and attending visits.7 In addition, earlier intervention results in more optimal developmental and behavioral outcomes.13 It is also suggested in recent literature that the initial meeting with the family navigator is critical to successfully implementing FN services.12 Facilitating a timely first meeting is paramount. Given the variability described in the current study, additional research is needed on the timing of FN services that considers families’ preferences and needs in addition to examining the site’s operating procedures to facilitate a successful first meeting.
The quantitative data, triangulated with the qualitative findings, reveal early signals for improved parental outcomes. However, our findings also raise many questions for future research. First, the current study was only able to capture a time-limited experience with FN services for a subset of families. Future studies are needed to examine how families’ needs may change over time and how FN models may effectively respond to those changing needs. Research is also needed on the timing and intensity of FN services, as well as on how to inform caregivers about FN. This recommendation is critical because there are currently only 3 studies evaluating navigation models with families of children with ASD.6,7,12 Future research should also focus on enhancing data collection on satisfaction with FN services, navigator ratings on the feasibility of service provision and capacity, the implementation processes, and longitudinally examining the efficacy of FN services.14 Finally, more research is needed on FN engagement strategies in addition to longitudinal studies addressing families’ needs over time.
Our results provided a more nuanced understanding of the need to balance variations in FN services based on individual, family, contextual, environmental, and service process variables and highlight the need to develop a model of FN services that leads to a higher probability of positive impact. At the organization level, a mission statement and a clear definition of the goals of FN services should be developed to enhance family awareness and knowledge of the program. Key stakeholders, including families, family navigators, service providers, and research staff, should be engaged to provide insight and feedback on the mission statement and goals. At the site level, FN services and expectations must be clearly detailed and disseminated to families. In addition, a process should be developed to support family navigators in identifying and building on family’s strengths as they develop strategies to address specific challenges and needs, particularly in response to the timing of FN services.
This study was not designed to capture the entirety of FN service provision in the ATN. In this pilot study, we examined variability in families’ experiences from a quantitative and qualitative lens for a largely representative sample of families receiving ATN services. However, the sample may not be generalizable because the ATN sample was well educated and primarily insured. Other populations may have different perspectives and experiences of FN service provision.
The challenges implementing the FN program and research protocol may be the result of the complexity associated with studying vulnerable populations soon after diagnosis, such that the clinical needs of families were prioritized over the study design. The 2-group study design presents limitations. FN services that took place before the baseline assessment for the FN-first group were not captured, preventing accurate assessment of the impact of FN services. In addition, few FN services were actually received. Consequently, a bigger sample or a longer observation period may have yielded larger effects. For those who received FN before the baseline assessment, a bias toward the null would have been expected. However, improvement was still seen for this group. It is possible that the increase in number of visits was a better indicator of improvement in parent activation.
Service discrepancies between the 2 groups may also be a result of the 2-group structure of the data and limits the utility of study findings, in that we cannot quantify how many FN visits the FN-first group received before the baseline assessment. Such variation is a limitation but also has advantages because it captures and reflects the true models of service delivery and implementation experience. This is also true for the families who participated in qualitative interviews from the FN-first group. Data on length of delay in FN services (eg, time between diagnosis and service receipt by group) were not available. Additionally, it was not possible to randomly sample participants, leading to potential sample selection bias.
There is currently no longitudinal data source that captures up-to-date data on each patient seen in the ATN. As such, we cannot compare the quantitative or qualitative subsamples to the current ATN population. Although the current study was able to capture change over time in parent-reported outcomes, all families in the study should have received FN services either before, during, or after the study period resulting in no comparison group. Therefore, it is possible that change in parent activation may have been the result of factors not captured in the current study, such as receipt of early intervention, school, or community-based resources and not solely the result of receiving FN services. However, multivariable regression models indicated that case management was associated with improved parent activation. Existing literature also suggests that the time period around receiving an ASD diagnoses is stressful for families.15 It is also possible that improvement in parent outcomes was associated with settling into their new parenting roles. Finally, multivariable regression models of improvement for family outcomes were defined after analyses were completed and hence are exploratory and not adjusted for multiple testing.
Conclusions
FN implementation is multifactored, including the timing of services, family factors, case management, and presumed need for services. Study findings suggest that FN is implemented differently across different health care delivery systems, resulting in highly variable initial outcomes and family experiences. Future research is needed to examine FN effectiveness over time and according to the complex needs of children with ASD and their families.
Dr Crossman conceptualized the qualitative portion of the study, contributed to the design of both the qualitative and quantitative study components, conducted qualitative interviews and developed the analysis plan, assisted with designing quantitative data analyses, and drafted and revised the manuscript; Dr Lindly contributed to the study design, conducted qualitative data collection and analysis, contributed to the quantitative data analysis planning, and revised manuscript drafts; Mr Chan planned and executed quantitative analysis and provided revisions and edits to the manuscript; Ms Eaves helped design the conceptual framework used to describe the qualitative data and provided revisions and edits to the manuscript; Dr Kuhlthau assisted with study conceptualization, contributed to the design, and participated in the writing, review, and edits of the manuscript; Dr Coury participated in the data collection planning and design of the study and reviewed and revised the manuscript; Dr Parker helped design the quantitative study and analysis, supervised the analysis, and provided revisions and edits to the manuscript; Dr Zand assisted with the study’s conceptualization and instrument selection and provided edits and content to the original and revised manuscript; Dr Nowinski assisted with study conceptualization, design, and site data collection and provided edits and revisions to the manuscript; Dr Smith assisted with the study’s conceptualization, design, and analysis and provided reviews and edits to the manuscript; Ms Tomkinson assisted with study conceptualization, design, and site data collection and provided reviews and edits to the manuscript; Dr Murray assisted with the conceptualization of the study, contributed to the design, and participated in the writing and review and edits of the manuscript; and all authors approved the final manuscript as submitted.
FUNDING: Supported by grant T32HS000063 from the Agency for Healthcare Research and Quality. The content is solely the responsibility of the authors and does not necessarily represent official views of the Agency for Healthcare Research and Quality. Autism Treatment Network (ATN) activity is/was supported by Autism Speaks and cooperative agreement UA3 MC11054 through the US Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Research Program to the Massachusetts General Hospital. This information or content and conclusions are those of the authors and should not be construed as the official position or policy of nor should any endorsements be inferred by Health Resources and Services Administration, US Department of Health and Human Services, the US government, or Autism Speaks. This work was conducted through the Autism Speaks ATN serving as the Autism Intervention Research Network on Physical Health.
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