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Improving Service Access in ASD: A Systematic Review of Family Empowerment Interventions for Children with Special Healthcare Needs

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Abstract

We systematically reviewed research on interventions designed to increase service access for children with special healthcare needs through family empowerment, defined as caregiver’s knowledge, attitudes, and behaviors to meet their family’s needs. The purpose was to describe these interventions, evaluate the evidence, and understand their relevance for increasing service access for children with autism spectrum disorder. Identified studies (n = 25) showed consistent improvements in knowledge and attitudes, limited assessment of behavior, and mixed outcomes for service access, suggesting a need for greater understanding of how to empower families to meet their service needs. Future research should aim to integrate theory across development, application, and evaluation of interventions, while considering alternative approaches that put more responsibility and burden on systems of care.

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References

  • Adler, N. O. (1999). Socioeconomic status and health : what we know and what we don’t. Annals of the New York Academy of Sciences, 896, 3–15.

    PubMed  Google Scholar 

  • Adler, N. E., Boyce, T., Chesney, M. A., Folkman, S., & Syme, L. (1993). Socioeconomic inequalities in health: no easy solution. Caring for the Uninsured and Underinsured, 269(24), 3140–3145.

    Google Scholar 

  • Ajzen, I. (1991). The theory of planned behavior. Orgnizational Behavior and Human Decision Processes, 50, 179–211.

    Google Scholar 

  • American Psychological Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: Author.

    Google Scholar 

  • Bailey, D. B., Hebbeler, K., Olmsted, M. G., Raspa, M., & Bruder, M. B. (2008). Measuring family outcomes: considerations for large-scale data collection in early intervention. Infants and Young Children, 21(3), 194–206.

    Google Scholar 

  • Baio, J., Wiggins, L. D., Christensen, D. L., Maenner, M. J., Daniels, J., Warren, Z., et al. (2018). Prevalence of autism spectrum disorder among children aged 8 years - autism and developmental disabilities monitoring network, 11 sites, United States, 2014. Morbidity and Mortality Weekly Report. Surveillance Summaries (Washington, D.C. : 2002), 67(6), 1–23.

    Google Scholar 

  • Baker, B. L., & Brightman, R. P. (1984). Training parents of retarded children: program-specific outcomes. Journal of Behavior Therapy and Experimental Psychiatry, 15(3), 255–260.

    PubMed  Google Scholar 

  • Balcazar, F. E., Keys, C. B., Bertram, J. F., & Rizzo, T. (1996). Advocate development in the field of developmental disabilities: a data-based conceptual model. Mental Retardation, 34(6), 341–351.

    PubMed  Google Scholar 

  • Banach, M., Iudice, J., Conway, L., & Couse, L. J. (2010). Family support and empowerment: post autism diagnosis support group for parents. Social Work with Groups, 33(1), 69–83.

    Google Scholar 

  • Bandura, A. (1989). Human agency in social cognitive theory. The American Psychologist, 44(9), 1175–1184.

    PubMed  Google Scholar 

  • Baskin, T. W., Tierney, S. C., Minami, T., & Wampold, B. E. (2003). Establishing specificity in psychotherapy: a meta-analysis of structural equivalence of placebo controls. Journal of Consulting and Clinical Psychology, 71(6), 973–979.

    PubMed  Google Scholar 

  • Bickman, L., Heflinger, C. A., Northrup, D., Sonnichsen, S., & Schilling, S. (1998). Long term outcomes to family caregiver empowerment. Journal of Child and Family Studies, 7(3), 269–282.

    Google Scholar 

  • Blumberg, S. J., Bramlett, M. D., Kogan, M. D., Schieve, L. A., Jones, J. R., & Lu, M. C. (2013). Changes in prevalence of parent-reported autism spectrum disorder in school-aged US children: 2007 to 2011-2012 (No. 65). US Department of Health and Human Services, Centers for Disease Control and Prevention, National Center for Health Statistics.

  • Boshoff, K., Gibbs, D., Phillips, R. L., Wiles, L., & Porter, L. (2016). Parents’ voices: ‘why and how we advocate’. A meta-synthesis of parents’ experiences of advocating for their child with autism spectrum disorder. Child: Care, Health and Development, 42(6), 784–797.

    Google Scholar 

  • Brachlow, A. E., Ness, K. K., McPheeters, M. L., & Gurney, J. G. (2007). Comparison of indicators for a primary care medical home between children with autism or asthma and other special health care needs. Archives of Pediatrics & Adolescent Medicine, 161(4), 399.

    Google Scholar 

  • Brookman-Frazee, L., & Koegel, R. L. (2004). Using parent/clinician partnerships in parent education programs for children with autism. Journal of Positive Behavior Interventions, 6(4), 195–213.

    Google Scholar 

  • Buelow, J. M., Johnson, C. S., Perkins, S. M., Austin, J. K., & Dunn, D. W. (2013). Creating Avenues for Parent Partnership (CAPP): an intervention for parents of children with epilepsy and learning problems. Epilepsy and Behavior, 27(1), 64–69.

    PubMed  Google Scholar 

  • Burke, M. M. (2017). Examining empowerment, family–school partnerships, and advocacy among rural and urban Latino families of children with disabilities. Rural Special Education Quarterly, 36(2), 56–63.

  • Burke, M. M., & Goldman, S. E. (2015). Identifying the associated factors of mediation and due process in families of students with autism spectrum disorder. Journal of Autism and Developmental Disorders, 45(5), 1345–1353.

    PubMed  Google Scholar 

  • Burke, M. M., & Sandman, L. (2017). The effectiveness of a parent legislative advocacy program. Journal of Policy and Practice in Intellectual Disabilities, 14(2), 138–145.

    Google Scholar 

  • Burke, M. M., Goldman, S. E., Hart, M. S., & Hodapp, R. M. (2016a). Evaluating the efficacy of a special education advocacy training program. Journal of Policy and Practice in Intellectual Disabilities, 13(4), 269–276.

    Google Scholar 

  • Burke, M. M., Magaña, S., Garcia, M., & Mello, M. P. (2016b). Brief report: the feasibility and effectiveness of an advocacy program for Latino families of children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 46(7), 2532–2538.

    PubMed  Google Scholar 

  • Burns, B. J., Costello, E. J., Angold, A., Tweed, D., Stangl, D., Farmer, E. M., & Erkanli, A. (1995). Children’s mental health service use across service sectors. Health Affairs, 14(3), 147–159.

    PubMed  Google Scholar 

  • Buschbacher, P., Fox, L., & Clarke, S. (2004). Recapturing desired family routines: a parent-professional behavioral collaboration. Research and Practice for Persons with Severe Disabilities, 29(1), 25–39.

    Google Scholar 

  • Casagrande, K. A., & Ingersoll, B. R. (2017). Service delivery outcomes in ASD: role of parent education, empowerment, and professional partnerships. Journal of Child and Family Studies, 26(9), 2386–2395.

  • Catalano, D., Holloway, L., & Mpofu, E. (2018). Mental health interventions for parent carers of children with autistic spectrum disorder: practice guidelines from a critical interpretive synthesis (CIS) systematic review. International Journal of Environmental Research and Public Health, 15(2), 1–23.

    Google Scholar 

  • Chiri, G., & Warfield, M. E. (2012). Unmet need and problems accessing core health care services for children with autism spectrum disorder. Maternal and Child Health Journal, 16(5), 1081–1091.

    PubMed  Google Scholar 

  • Chorpita, B. F., & Daleiden, E. L. (2009). Mapping evidence-based treatments for children and adolescents: application of the distillation and matching model to 615 treatments from 322 randomized trials. Journal of Consulting and Clinical Psychology, 77(3), 566–579.

    PubMed  Google Scholar 

  • Coots, J. J. (1998). Family resources and parent participation in schooling activities for their children with developmental delays. Journal of Special Education, 31(4), 498–520.

    Google Scholar 

  • Crane, L., Chester, J. W., Goddard, L., Henry, L. A., & Hill, E. (2016). Experiences of autism diagnosis: a survey of over 1000 parents in the United Kingdom. Autism, 20(2), 153–162.

    PubMed  Google Scholar 

  • Crane-Ross, D., Lutz, W. J., & Roth, D. (2006). Consumer and case manager perspectives of service empowerment: relationship to mental health recovery. Journal of Behavioral Health Services and Research, 33(2), 142–155.

    PubMed  Google Scholar 

  • Curtis, W. J., & Singh, N. N. (1996). Family involvement and empowerment in mental health service provision for children with emotional and behavioral disorders. Journal of Child and Family Studies, 5(4), 503–517.

    Google Scholar 

  • Da Paz, N. S., & Wallander, J. L. (2017). Interventions that target improvements in mental health for parents of children with autism spectrum disorders: a narrative review. Clinical Psychology Review, 51, 1–14.

    PubMed  Google Scholar 

  • Dempsey, I., & Dunst, C. J. (2004). Helpgiving styles and parent empowerment in families with a young child with a disability. Journal of Intellectual and Developmental Disability, 29(1), 40–51.

    Google Scholar 

  • Dempsey, I., & Foreman, P. (1997). Toward a clarification of empowerment as an outcome of disability service provision. International Journal of Disability, Development and Education, 44(February 2015), 287–303.

  • Dempsey, I., & Keen, D. (2008). A review of processes and outcomes in family-centered services for children with a disability. Topics in Early Childhood Special Education, 28(1), 42–52.

    Google Scholar 

  • Denboba, D., McPherson, M. G., Kenney, M. K., Strickland, B., & Newacheck, P. W. (2006). Achieving family and provider partnerships for children with special health care needs. Pediatrics, 118(4), 1607–1615.

    PubMed  Google Scholar 

  • Dixon, L., Stewart, B., Burland, J., Delahanty, J., Lucksted, A., & Hoffman, M. (2001). Pilot study of the effectiveness of the family-to-family education program. Psychiatric Services, 52(7), 965–967.

    PubMed  Google Scholar 

  • Dunst, C. J., Trivette, C. M. (2009). Meta-Analytic Structural Equation Modeling of the Influences of Family-Centered Care on Parent and Child Psychological Health. International Journal of Pediatrics, 2009, 1–9.

  • Dunst, C. J., Trivette, C. M., & Hamby, D. W. (2007). Meta-analysis of family-centered helpgiving practices research. Mental Retardation and Developmental Disabilities Research Reviews, 13, 370–378.

    PubMed  Google Scholar 

  • Durkin, M. S., Maenner, M. J., Meaney, F. J., Levy, S. E., di Guiseppi, C., Nicholas, J. S., et al. (2010). Socioeconomic inequality in the prevalence of autism spectrum disorder: evidence from a U.S. cross-sectional study. PLoS One, 5(7), 1–8.

    Google Scholar 

  • Fisher, J. D., & Fisher, W. A. (2002). The information-motivation-behavioral skills model. In R. J. DiClemente, R. A. Crosby, & M. C. Kegler (Eds.), Emerging Theories in Health Promotion Practice and Research: Strategies for Improving Public Health (pp. 285–312). John Wiley & Sons.

  • Fordham, L., Gibson, F., & Bowes, J. (2012). Information and professional support: key factors in the provision of family-centred early childhood intervention services. Child: Care, Health and Development, 38(5), 647–653.

    Google Scholar 

  • Fristad, M. A., Goldberg-Arnold, J. S., & Gavazzi, S. M. (2002). Multifamily psychoeducation groups (MFPG) for families of children with bipolar disorder. Bipolar Disorders, 4(4), 254–262.

    PubMed  Google Scholar 

  • Fristad, M. A., Goldberg-Arnold, J. S., & Gavazzi, S. M. (2003). Multi-family psychological groups in the treatment of children with mood disorders. Journal of Marital & Family Therapy, 29(4), 491–504.

    Google Scholar 

  • Gabovitch, E. M., & Curtin, C. (2009). Family-centered care for children with autism spectrum disorders: a review. Marriage and Family Review, 45(5), 469–498.

    Google Scholar 

  • Glang, A., McLaughlin, K., & Schroeder, S. (2007). Using interactive multimedia to teach parent advocacy skills: an exploratory study. Journal of Head Trauma Rehabilitation, 22(3), 198–205.

    Google Scholar 

  • Golden, S. L., & Nageswaran, S. (2012). Caregiver voices: coordinating care for children with complex chronic conditions. Clinical Pediatrics, 51(8), 723–729.

    PubMed  Google Scholar 

  • Graves, K. N., & Shelton, T. L. (2007). Family empowerment as a mediator between family-centered systems of care and changes in child functioning: identifying an important mechanism of change. Journal of Child and Family Studies, 16(4), 556–566.

    Google Scholar 

  • Guerrero, A., Chen, J., Inkelas, M., Rodriguez, H., & Ortega, A. (2010). Racial and ethnic disparities in pediatric experiences of family care. Medical Care, 48(4), 388–393.

    PubMed  PubMed Central  Google Scholar 

  • Gurney, J. G., McPheeters, M. L., & Davis, M. M. (2006). Parental report of health conditions and health care use among children with and without autism. Archives of Pediatrics & Adolescent Medicine, 160(8), 825.

    Google Scholar 

  • Haine-Schlagel, R., & Walsh, N. E. (2015). A review of parent participation engagement in child and family mental health treatment. Clinical Child and Family Psychology Review, 18(2), 133–150.

    PubMed  PubMed Central  Google Scholar 

  • Heflinger, C. A., Bickman, L., Northrup, D., & Sonnichsen, S. (1997). A theory-driven intervention and evaluation to explore family caregiver empowerment. Journal of Emotional and Behavioral Disorders, 5(3), 184–191.

    Google Scholar 

  • Higgins, J. P. T., Altman, D. G., Gøtzsche, P. C., Jüni, P., Moher, D., Oxman, A. D., et al. (2011). The Cochrane Collaboration’s tool for assessing risk of bias in randomised trials. BMJ (Online), 343(7829), 1–9.

    Google Scholar 

  • Hoagwood, K. E. (2005). Family-based services in children’s mental health: a research review and synthesis. Journal of Child Psychology and Psychiatry and Allied Disciplines, 46(7), 690–713.

    Google Scholar 

  • Hoagwood, K. E., Green, E., Kelleher, K., Schoenwald, S., Rolls-Reutz, J., Landsverk, J., et al. (2008). Family advocacy, support and education in children’s mental health: results of a national survey. Administration and Policy in Mental Health and Mental Health Services Research, 35(1–2), 73–83.

    PubMed  Google Scholar 

  • Hoagwood, K. E., Rodriguez, J., Burton, G., Penn, M., Olin, S. S., Shorter, P., & Newschaffer, C. J. (2009, March). Parents as change agents: the parent empowerment program for parent advisors in New York state. Presented at the 22nd Annual Research Conference: A system of care for children’s mental health: Expanding the research base, Tampa, FL.

  • Hoagwood, K. E., Cavaleri, M. A., Olin, S. S., Burns, B. J., Slaton, E., Gruttadaro, D., & Hughes, R. (2010). Family support in children’s mental health: a review and synthesis. Clinical Child and Family Psychology Review, 13(1), 1–45.

    PubMed  Google Scholar 

  • Hulme, P. A. (1999). Family empowerment: a nursing intervention with suggested outcomes for families of children with a chronic health condition. Journal of Family Nursing, 5(1), 33–50.

    Google Scholar 

  • Hutchison, S. D., Steginga, S. K., & Dunn, J. (2006). The tiered model of psychosocial intervention in cancer: a community based approach. Psycho-Oncology, 15, 541–546.

    PubMed  Google Scholar 

  • Jamison, J. M., Fourie, E., Siper, P. M., Trelles, M. P., George-Jones, J., Buxbaum Grice, A., et al. (2017). Examining the efficacy of a family peer advocate model for black and Hispanic caregivers of children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 47(5), 1314–1322.

    PubMed  Google Scholar 

  • Johnson, T., Byers, K. D., Byrnes, K., Davis-Groves, S. a., & McDonald, T. P. (2013). Obtaining stakeholder consensus on the core components of a parent support and training model for parents of children with serious emotional disturbances. Families in Society: The Journal of Contemporary Social Services, 94(3), 211–219.

    Google Scholar 

  • Kable, J. A., Coles, C. D., Strickland, D., & Taddeo, E. (2012). Comparing the effectiveness of on-line versus in-person caregiver education and training for behavioral regulation in families of children with FASD. International Journal of Mental Health and Addiction, 10(6), 791–803.

    PubMed  PubMed Central  Google Scholar 

  • Karst, J. S., Van Hecke, A. V., & van Hecke, A. V. (2012). Parent and family impact of autism spectrum disorders: a review and proposed model for intervention evaluation. Clinical Child and Family Psychology Review, 15(3), 247–277.

    PubMed  Google Scholar 

  • Kogan, M. D., Strickland, B. B., Blumberg, S. J., Singh, G. K., Perrin, J. M., van Dyck, P. C., & van Dyck, P. C. (2008). A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005-2006. Pediatrics, 122(6), e1149–e1158.

    PubMed  Google Scholar 

  • Koren, P. E., DeChillo, N., & Friesen, B. J. (1992). Measuring empowerment in families whose children have emotional disablilities: a brief questionnnaire. Rehabilitation Psychology, 37(4), 305–321.

    Google Scholar 

  • Koroloff, N. M., Elliott, D. J., Koren, P. E., & Friesen, B. J. (1996). Linking low-income families to children’s mental health services: an outcome study. Journal of Emotional and Behavioral Disorders, 4(1), 2–11.

    Google Scholar 

  • Krauss, M. W., Gulley, S., Sciegaj, M., & Wells, N. (2003). Access to specialty medical care for children with mental retardation, autism, and other special health care needs. Mental Retardation, 41(5), 329–339.

    PubMed  Google Scholar 

  • Kuhn, J. C., & Carter, A. S. (2006). Maternal self‐efficacy and associated parenting cognitions among mothers of children with autism. American Journal of Orthopsychiatry, 76(4), 564–575.

  • Kuo, D. Z., Bird, T. M., & Tilford, J. M. (2011). Associations of family-centered care with health care outcomes for children with special health care needs. Maternal and Child Health Journal, 15(6), 794–805.

    PubMed  Google Scholar 

  • Lambert, M. J. (2005, July). Early response in psychotherapy: further evidence for the importance of common factors rather than “placebo effects”. Journal of Clinical Psychology, 61, 855–869.

    PubMed  Google Scholar 

  • Leenaars, L. S., Denys, K., Henneveld, D., & Rasmussen, C. (2012). The impact of fetal alcohol spectrum disorders on families: evaluation of a family intervention program. Community Mental Health Journal, 48(4), 431–435.

    PubMed  Google Scholar 

  • Levine, E. B., & Trickett, E. J. (2000). Parents’ perception of teacher outreach and parent involvement in children’s education. Journal of Prevention & Intervention in the Community, 20(1–2), 121–137.

    Google Scholar 

  • Liberati, A., Altman, D. G., Tetzlaff, J., Mulrow, C., Gøtzsche, P. C., Ioannidis, J. P. A., et al. (2009). The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate health care interventions: explanation and elaboration. PLoS Medicine, 6(7), e1000100.

    PubMed  PubMed Central  Google Scholar 

  • Magaña, S., Lopez, K., Aguinaga, A., & Morton, H. (2013). Access to diagnosis and treatment services among Latino children with autism spectrum disorders. Intellectual and Developmental Disabilities, 51(3), 141–153.

    PubMed  Google Scholar 

  • Magaña, S., Lopez, K., & Machalicek, W. (2017). Parents taking action: a psycho-educational intervention for Latino parents of children with autism spectrum disorder. Family Process, 56(1), 59–74.

    PubMed  Google Scholar 

  • Matson, J. L., Wilkins, J., & Macken, J. (2008). The relationship of challenging behaviors to severity and symptoms of autism spectrum disorders. Journal of Mental Health Research in Intellectual Disabilities, 2(1), 29–44.

    Google Scholar 

  • McCarthy, M. J., Herbert, R., Brimacombe, M., & Hansen, J. (2002). Empowering parents through asthma education. Pediatric Nursing, 28(5), 465–473.

  • McKay, M. M. K., Stoewe, J., McCadam, K., & Gonzales, J. (1998). Increasing access to child mental health services for urban children and their caregivers. Health and Social Work, 23(1), 9–15.

    PubMed  Google Scholar 

  • Mendenhall, A. N., Fristad, M. A., & Early, T. J. (2009). Factors influencing service utilization and mood symptom severity in children with mood disorders: effects of multifamily psychoeducation groups (MFPGs). Journal of Consulting and Clinical Psychology, 77(3), 463–473.

    PubMed  Google Scholar 

  • Michie, S., Johnston, M., Francis, J., Hardeman, W., & Eccles, M. (2008). From theory to intervention: mapping theoretically derived behavioural determinants to behaviour change techniques. Applied Psychology, 57(4), 660–680.

    Google Scholar 

  • Mirza, M., Krischer, A., Stolley, M., Magaña, S., & Martin, M. (2018). Review of parental activation interventions for parents of children with special health care needs. Child: Care, Health and Development, 44(3), 401–426.

    Google Scholar 

  • Moes, D. R., & Frea, W. D. (2002). Contextualized behavioral support in early intervention for children with autism and their families. Journal of Autism and Developmental Disorders, 32(6), 519–533.

    PubMed  Google Scholar 

  • Montes, G., & Halterman, J. S. (2011). White-black disparities in family-centered care among children with autism in the United States: evidence from the NS-CSHCN 2005-2006. Academic Pediatrics, 11(4), 297–304.

    PubMed  Google Scholar 

  • Murray, M. M., Ackerman-Spain, K., Williams, E. U., & Ryley, A. T. (2011). Knowledge is power: empowering the autism community through parent – professional training. School Community Journal, 21(1), 19–36.

    Google Scholar 

  • Ngui, E. M., & Flores, G. (2006). Satisfaction with care and ease of using health care services among parents of children with special health care needs: the roles of race/ethnicity, insurance, language, and adequacy of family-centered care. Pediatrics, 117(4), 1184–1196.

    PubMed  Google Scholar 

  • Nicholson, N., Shapley, K., Martin, P., Talkington, R. A., & Caraway, T. H. (2014). Trekking to the top-learning to listen and talk: changes in attitude and knowledge after a family camp intervention. The Volta Review, 114(1), 57–82.

    Google Scholar 

  • Oono, I. P., Honey, E. J., & Mcconachie, H. (2013). Parent-mediated early intervention for young children with autism spectrum disorders (ASD). Evidence-Based Child Health, 8(6), 2380–2479.

    Google Scholar 

  • Ouzzani, M., Hammady, H., Fedorowicz, Z., & Elmagarmid, A. (2016). Rayyan - a web and mobile app for systematic reviews. Systematic Reviews, 2(210), 1–10. 

  • O’Neil-Pirozzi, T. M., & Heydt, M. (2012). Benefit of parent participation in a program emphasizing asthma health literacy. Journal of Medical Speech-Language Pathology, 20(1), 35–52.

  • Parish, S., Magaña, S., Rose, R., Timberlake, M., & Swaine, J. G. (2012). Health care of Latino children with autism and other developmental disabilities: quality of provider interaction mediates utilization. American Journal on Intellectual and Developmental Disabilities, 117(4), 304–315.

    PubMed  Google Scholar 

  • Peck, C. Z. (1998). Program evaluation of a family systems model of service delivery for parents of children with autism. Special Services in the Schools, 14(1–2), 127–145.

    Google Scholar 

  • Pennarola, B. W., Rodday, A. M., Mayer, D. K., Ratichek, S. J., Davies, S. M., Syrjala, K. L., et al. (2012). Factors associated with parental activation in pediatric hematopoietic stem cell transplant. Medical Care Research and Review, 69(2), 194–214.

    PubMed  Google Scholar 

  • Picard, I., Morin, D., & De Mondehare, L. (2014). Psychoeducational program for parents of adolescents with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 11(4), 279–292.

    Google Scholar 

  • Prinz, R. J., & Sanders, M. R. (2007). Adopting a population-level approach to parenting and family support interventions. Clinical Psychology Review, 27(6), 739–749.

    PubMed  Google Scholar 

  • Rappaport, J. (1984). Studies in empowerment: introduction to the issue. Prevention in Human Services, 3(2), 1–7.

    Google Scholar 

  • Rappaport, J. (1987). Terms of empowerment/exemplars of prevention: toward a theory for community psychology. American Journal of Community Psychology, 15(2), 121–148.

    PubMed  Google Scholar 

  • Ratto, A. B., & Mesibov, G. B. (2015). Autism spectrum disorders in adolescence and adulthood: long-term outcomes and relevant issues for treatment and research. Science China Life Sciences, 58(10), 1010–1015.

    PubMed  Google Scholar 

  • Resendez, M. G., Quist, R. M., & Matshazi, D. G. M. (2000). A longitudinal analysis of family empowerment and client outcomes. Journal of Child and Family Studies, 9(4), 449–460.

    Google Scholar 

  • Riger, S. (1993). What’s wrong with empowerment. American Journal of Community Psychology, 21(3), 279–292.

    Google Scholar 

  • Rodriguez, J., Olin, S. S., Hoagwood, K. E., Shen, S., Burton, G., Radigan, M., & Jensen, P. S. (2011). The development and evaluation of a parent empowerment program for family peer advocates. Journal of Child and Family Studies, 20(4), 397–405.

    PubMed  PubMed Central  Google Scholar 

  • Roth, D., & Crane-Ross, D. (2002). Impact of services, met needs, and service empowerment on customer outcomes. Mental Health Services Research, 4(1), 43–56.

    PubMed  Google Scholar 

  • Roth, B. M., Kralovic, S., Roizen, N. J., Spannagel, S. C., Minich, N., & Knapp, J. (2016). Impact of autism navigator on access to services. Journal of Developmental and Behavioral Pediatrics, 37(3), 188–195.

    PubMed  Google Scholar 

  • Ryan, R., & Hill, S. (2016). How to GRADE the quality of the evidence. Cochrane Consumers and Communication Group, Available at Http://Cccrg.Cochrane.Org/Author-Resources. Version 3.0, December 2.

  • Schultz, T. R., Schmidt, C. T., & Stichter, J. P. (2011). A review of parent education programs for parents of children with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 26(2), 96–104.

    Google Scholar 

  • Shamseer, L., Moher, D., Clarke, M., Ghersi, D., Liberati, A., Petticrew, M., Shekelle, P., & Stewart, L. A. (2015). Preferred reporting items for systematic review and meta-analysis protocols (PRISMA-p) 2015: elaboration and explanation. BMJ, 349, 1–25.

  • Shapiro, J., Monzo, L. D., Rueda, R., Gomes, J. A., & Blacher, J. (2004). Alienated advocacy: perspectives of Latina mothers of young adults with developmental disabilities on service systems. Mental Retardation, 42(1), 37–54.

    PubMed  Google Scholar 

  • Shilling, V., Morris, C., Thompson-Coon, J., Ukoumunne, O., Rogers, M., & Logan, S. (2013). Peer support for parents of children with chronic disabling conditions: a systematic review of quantitative and qualitative studies. Developmental Medicine and Child Neurology, 55(7), 602–609.

    PubMed  Google Scholar 

  • Siller, M., Reyes, N., Hotez, E., Hutman, T., & Sigman, M. (2014). Longitudinal change in the use of services in autism spectrum disorder: understanding the role of child characteristics, family demographics, and parent cognitions. Autism, 18(4), 433–446.

    PubMed  Google Scholar 

  • Singh, N. N., John, C. W., Ellis, C. R., Wechsler, H. A., Best, A. M., & Cohen, R. (1997). Empowerment status of families whose children have serious emotional disturbance and attention-deficit/hyperactivity disorder. Journal of Emotional and Behavioral Disorders, 5(4), 223–229.

    Google Scholar 

  • Stewart, D., Law, M., Burke-Gaffney, J., Missiuna, C., Rosenbaum, P., King, G., et al. (2006). Keeping it together™: an information KIT for parents of children and youth with special needs. Child: Care, Health and Development, 32(4), 493–500.

    Google Scholar 

  • Summers, J. A., Marquis, J., Mannan, H., Turnbull, A. P., Fleming, K., Poston, D. J., et al. (2007). Relationship of perceived adequacy of services, family-professional partnerships, and family quality of life in early childhood service programmes. International Journal of Disability, Development and Education, 54(3), 319–338.

    Google Scholar 

  • Swiezy, N., Stuart, M., & Korzekwa, P. (2008). Bridging for success in autism: training and collaboration across medical, educational, and community systems. Child and Adolescent Psychiatric Clinics of North America, 17(4), 907–922.

    PubMed  Google Scholar 

  • Szapocznik, J., Perez-vidal, A., Brickman, A. L., Foote, F. H., Santisteban, D., Hervis, O., & Kurtines, W. M. (1988). Engaging adolescent drug abusers and their families in treatment: a strategic structural systems approach. Journal of Counsulting and Clinical Psychology, 56(4), 552–557.

    Google Scholar 

  • Taub, J., Tighe, T. a., & Burchard, J. (2001). The effects of parent empowerment on adjustment for children receiving comprehensive mental health services. Children’s Services: Social Policy, Research, and Practice, 4(3), 103–122.

    Google Scholar 

  • Thase, M. E., Friedman, E. S., Berman, S. R., Fasiczka, A. L., Lis, J. A., Howland, R. H., & Simons, A. D. (2000). Is cognitive behavior therapy just a “nonspecific” intervention for depression? A retrospective comparison of consecutive cohorts treated with cognitive behavior therapy or supportive counseling and pill placebo. Journal of Affective Disorders, 57(1–3), 63–71.

    PubMed  Google Scholar 

  • Thomas, P., Zahorodny, W., Peng, B., Kim, S., Jani, N., Halperin, W., & Brimacombe, M. (2012). The association of autism diagnosis with socioeconomic status. Autism, 16(2), 201–213.

    PubMed  Google Scholar 

  • Thomas, K. C., Stein, G. L., Williams, C. S., Jolles, M. P., Sleath, B. L., Martinez, M., Garcia, S. J., Guzman, L. E., Williams, C.E., & Morrissey, J. P. (2017). Fostering activation among Latino parents of children with mental health needs: an RCT. Psychiatric Services, 68(10), 1068–1075.

  • Thompson, L., Lobb, C., Elling, R., Herman, S., Jurkiewicz, T., & Hulleza, C. (1997). Pathways to family empowerment: effects of family-centered delivery of early intervention services. Exceptional Children, 64(1), 99–113.

    Google Scholar 

  • Tolmie, R. S., Bruck, S., & Kerslake, R. (2017). The early intervention readiness program (EIRP): a post-ASD diagnosis family support program. Topics in Early Childhood Special Education, 36(4), 242–250.

    Google Scholar 

  • Trainor, A. A. (2010). Diverse approaches to parent advocacy during special education home—school interactions: identification and use of cultural and social capital. Remedial and Special Education, 31(1), 34–47.

    Google Scholar 

  • Turcotte, P., Mathew, M., Shea, L. L., Brusilovskiy, E., & Nonnemacher, S. L. (2016). Service needs across the lifespan for individuals with autism. Journal of Autism and Developmental Disorders, 46(7), 2480–2489.

    PubMed  Google Scholar 

  • Vasilopoulou, E., & Nisbet, J. (2016). The quality of life of parents of children with autism spectrum disorder: a systematic review. Research in Autism Spectrum Disorders, 23, 36–49.

    Google Scholar 

  • Veritas Health Innovation. (2017). Covidence systematic review software. Melbourne, Victoria.

  • Vohra, R., Madhavan, S., Sambamoorthi, U., & St. Peter, C. (2014). Access to services, quality of care, and family impact for children with autism, other developmental disabilities, and other mental health conditions. Autism, 18(7), 815–826.

    PubMed  Google Scholar 

  • Weiss, J. A., Cappadocia, M. C., MacMullin, J. A., Viecili, M., & Lunsky, Y. (2012). The impact of child problem behaviors of children with ASD on parent mental health: the mediating role of acceptance and empowerment. Autism, 16(3), 261–274.

    PubMed  Google Scholar 

  • Weiss, J. A., Robinson, S., Fung, S., Tint, A., Chalmers, P., & Lunsky, Y. (2013). Family hardiness, social support, and self-efficacy in mothers of individuals with autism spectrum disorders. Research in Autism Spectrum Disorders, 7(11), 1310–1317.

    Google Scholar 

  • Weiss, J. A., MacMullin, J. A., & Lunsky, Y. (2015). Empowerment and parent gain as mediators and moderators of distress in mothers of children with autism spectrum disorders. Journal of Child and Family Studies, 24(7), 2038–2045.

    Google Scholar 

  • Wong, C., Odom, S. S. L., Hume, K. A., Cox, A. A. W., Fettig, A., Kucharczyk, S., et al. (2015). Evidence-based practices for children, youth, and young adults with autism spectrum disorder: a comprehensive review. Disorders, 45(7), 1951–1966.

    Google Scholar 

  • Yatchmenoff, D. K., Koren, P. E., Friesen, B. J., Gordon, L. J., & Kinney, R. F. (1998). Enrichment and stress in families caring for a child with a serious emotional disorder. Journal of Child and Family Studies, 7(2), 129–145.

    Google Scholar 

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Acknowledgements

Thank you to Drs. Amy Drahota, Connie Sung, and Ignacio Acevedo-Polakovich for feedback on the initial project conceptualization and manuscript. Special thanks to Genna Koehn for assistance with title, abstract, full-text review, and data extraction

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  1. Department of Psychology, Michigan State University, 316 Physics Road, East Lansing, MI, 48823, USA

    Karís Casagrande & Brooke R. Ingersoll

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  1. Karís Casagrande
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Contributions

Both authors contributed to initial study conceptualization. Review protocol development, data collection and analysis, and writing of the initial manuscript were completed by Karís Casagrande. Brooke Ingersoll provided feedback on the framing of the study, as well as substantive revisions and final edits of the manuscript.

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Correspondence to Karís Casagrande.

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Karís Casagrande is affiliated with the Department of Psychology at Michigan State University, in East Lansing, MI, USA. Brooke R. Ingersoll is affiliated with the Department of Psychology at Michigan State University, in East Lansing, MI, USA.

There have been no changes in affiliation for either author through the duration of the study.

Thank you to Drs. Amy Drahota, Connie Sung, and Ignacio Acevedo-Polakovich for feedback on the initial project conceptualization and manuscript. Special thanks to Genna Koehn for assistance with title, abstract, full-text review, and data extraction.

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Casagrande, K., Ingersoll, B.R. Improving Service Access in ASD: A Systematic Review of Family Empowerment Interventions for Children with Special Healthcare Needs. Rev J Autism Dev Disord 8, 170–185 (2021). https://doi.org/10.1007/s40489-020-00208-9

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