Stress and Parents of Children with Autism: A Review of Literature

Bonis, Susan

doi:10.3109/01612840.2015.1116030

Cited by 404Family and Disability Support ResearchAutism Spectrum Disorder ResearchFamily Caregiving in Mental Illness

Stress and Parents of Children with Autism: A Review of Literature

Bonis, Susan·2016·Issues in Mental Health Nursing

DOI 10.3109/01612840.2015.1116030

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Abstract

The purpose of this review is twofold. The first is to synthesize factors that impact parents' experiences of caring for a child with autism spectrum disorder (ASD); the second is to identify factors that impact parental stress and parental decision-making to use autism services or not. Parents of children with ASD score higher on levels of stress than other groups of parents. The daily challenges of caring for the child are endless and effect all aspects of the child's care as well as the parent's mental health and ability to manage the needs of the child and family. Understanding more about the challenges parents face will provide direction for research, intervention development, and practice. Accordingly, a search was conducted using CINAHL and Medline. Inclusion criteria included articles available in full text, published in English, and focused on children with ASD distinct from other diagnoses, as well as parental experiences of caring for a child with ASD. Articles (N = 132) that met the inclusion criteria were summarized. Challenging aspects of the child's diagnosis and care are discussed, as well as the factors that impact parental stress and decision-making to use autism services. Recommendations for research and practice include interventional development related to early diagnosis, disparity, access to care, parental decision-making to use autism services, and parental stress management.

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Parents of children with a neurodevelopmental disorder (NDD) experience more stress than parents of typically developing children.
“Parents of children with a neurodevelopmental disorder (NDD) experience more stress than parents of typically developing children.”
From Effectiveness of a positive psychology and mindfulness-based app on mental health for parents of children with a neurodevelopmental disorder: study protocol of a pragmatic international randomized controlled trial (2024) · cites this paper as [9]
Research has identified challenging behaviour as the best predictor of parental stress.
“Research has identified CB as the best predictor of parental stress (5, 9–11).”
From ProVIA-Kids - outcomes of an uncontrolled study on smartphone-based behaviour analysis for challenging behaviour in children with intellectual and developmental disabilities or autism spectrum disorder (2024) · cites this paper as [10]

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Jones, L., Totsika, V., Hastings, R. P., & Petalas, M. A. (2013) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-012-1756-9 · Cited by 116 · see citing works
Age at autism spectrum disorder (ASD) diagnosis by race, ethnicity, and primary household language among children with special health care needs, United States, 2009–2010.
Jo, H., Schieve, L. A., Rice, C. E., Yeargin-Allsopp, M., Tian, L. H., Blumberg, S. J., Kogan, M. D., & Boyle, C. A. (2015) · Maternal and Child Health Journal · doi:10.1007/s10995-015-1683-4 · Cited by 116 · see citing works
Use of Autism-Related Services by Families and Children
Thomas, K. C., MORRISSEY, J. P., & McLaurin, C. (2006) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-006-0208-9 · Cited by 115 · see citing works
Coping With Autism: A Journey Toward Adaptation
Lutz, H. R., Patterson, B. J., & Klein, J. (2011) · Journal of Pediatric Nursing · doi:10.1016/j.pedn.2011.03.013 · Cited by 102 · see citing works
A Randomized, Controlled Trial of a Home-Based Intervention Program for Children with Autism and Developmental Delay
Rickards, A. L., Walstab, J., Wright-Rossi, R. A., Simpson, J., & Reddihough, D. S. (2007) · Journal of Developmental & Behavioral Pediatrics · doi:10.1097/dbp.0b013e318032792e · Cited by 101 · see citing works
Parenting a Child with Autism: Contextual Factors Associated with Enhanced Daily Parental Mood
Pottie, C. G., Cohen, J., & Ingram, K. M. (2008) · Journal of Pediatric Psychology · doi:10.1093/jpepsy/jsn094 · Cited by 98 · see citing works
Conceptualization of autism in the Latino community and its relationship with early diagnosis.
Zuckerman, K. E., Sinche, B., Cobian, M., Cervantes, M., Mejia, A., Becker, T., & Nicolaidis, C. (2014) · Journal of Developmental & Behavioral Pediatrics · doi:10.1097/dbp.0000000000000091 · Cited by 97 · see citing works
Assessing needs in parents of children with autism spectrum disorder: A crucial preliminary step to target relevant issues for support programs
Derguy, C., Michel, G., M’Baïlara, K., Roux, S., & Bouvard, M. P. (2015) · Journal of Intellectual & Developmental Disability · doi:10.3109/13668250.2015.1023707 · Cited by 96 · see citing works
Sensory Differences and Mealtime Behavior in Children With Autism
Zobel-Lachiusa, J., Andrianopoulos, M. V., Mailloux, Z., & Cermak, S. A. (2015) · American Journal of Occupational Therapy · doi:10.5014/ajot.2015.016790 · Cited by 89 · see citing works
Logging On: Evaluating an Online Support Group for Parents of Children with Autism Spectrum Disorders
Clifford, T., & Minnes, P. (2012) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-012-1714-6 · Cited by 88 · see citing works
Feeling Good, Feeling Bad: Influences of Maternal Perceptions of the Child and Marital Adjustment on Well-being in Mothers of Children with an Autism Spectrum Disorder
Lickenbrock, D. M., Ekas, N. V., & Whitman, T. L. (2010) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-010-1105-9 · Cited by 86 · see citing works
Parental Experience with Treatments for Autism
Green, V. A. (2007) · Journal of Developmental and Physical Disabilities · doi:10.1007/s10882-007-9035-y · Cited by 75 · see citing works
Predictors of parent stress in a sample of children with ASD: Pain, problem behavior, and parental coping
Walsh, C. E., Mulder, E., & Tudor, M. E. (2012) · Research in Autism · doi:10.1016/j.rasd.2012.08.010 · Cited by 74 · see citing works
Group Intensive Family Training (GIFT) for preschoolers with autism spectrum disorders
Anan, R. M., Warner, L. J., McGillivary, J. E., Chong, I. M., & Hines, S. J. (2008) · Behavioral Interventions · doi:10.1002/bin.262 · Cited by 71 · see citing works
The Emergence of Challenging Behaviors in At-Risk Toddlers with and without Autism Spectrum Disorder: A Cross-Sectional Study
Fodstad, J. C., Rojahn, J., & Matson, J. L. (2012) · Journal of Developmental and Physical Disabilities · doi:10.1007/s10882-011-9266-9 · Cited by 69 · see citing works
Disparity of Care for Children With Parent-Reported Autism Spectrum Disorders
Harstad, E., Huntington, N., Bacic, J., & Barbaresi, W. (2013) · Academic Pediatrics · doi:10.1016/j.acap.2013.03.010 · Cited by 67 · see citing works
Prevalence and Health Correlates of Overweight and Obesity in Children with Autism Spectrum Disorder
Gillette, M. L. D., Borner, K. B., Nadler, C. B., Cordts, K. M. P., Stough, C. C. O., Romine, R. S., & Davis, A. M. (2015) · Journal of Developmental & Behavioral Pediatrics · doi:10.1097/dbp.0000000000000198 · Cited by 67 · see citing works
Who Participates in Support Groups for Parents of Children with Autism Spectrum Disorders? The Role of Beliefs and Coping Style
Clifford, T., & Minnes, P. (2012) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-012-1561-5 · Cited by 65 · see citing works
Parent education and home‐based behaviour analytic intervention: an examination of parents’ perceptions of outcome
Dillenburger, K., Keenan, M., Gallagher, S. M., & McElhinney, M. (2004) · Journal of Intellectual & Developmental Disability · doi:10.1080/13668250410001709476 · Cited by 61 · see citing works
A consideration of medicalisation: Choice, engagement and other responsibilities of parents of children with autism spectrum disorder
valentine, K. (2010) · Social Science & Medicine · doi:10.1016/j.socscimed.2010.06.010 · Cited by 60 · see citing works
Parents’ expectations, awareness, and experiences of accessing evidence-based speech-language pathology services for their children with autism
Auert, E.-J., Trembath, D. L., Arciuli, J., & Thomas, D. (2012) · International Journal of Speech-Language Pathology · doi:10.3109/17549507.2011.652673 · Cited by 59 · see citing works
Urbanicity-related Variation in Help-seeking and Services Utilization among Preschool-age Children with Autism in Taiwan
Chen, C.-Y., Liu, C.-Y., Su, W.-C., Huang, S.-L., & Lin, K.-M. (2008) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-007-0416-y · Cited by 57 · see citing works
Early features of autism
Mooney, E. L., Gray, K. M., & Tonge, B. J. (2006) · European Child & Adolescent Psychiatry · doi:10.1007/s00787-006-0499-6 · Cited by 57 · see citing works
Beyond an Autism Diagnosis: Children’s Functional Independence and Parents’ Unmet Needs
Brown, H. K., Ouellette-Kuntz, H. M. J., Hunter, D., Kelley, E. A., Cobigo, V., & Lam, M. (2010) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-010-1148-y · Cited by 55 · see citing works
Adaptation to Daily Stress Among Mothers of Children With an Autism Spectrum Disorder: The Role of Daily Positive Affect
Ekas, N. V., & Whitman, T. L. (2010) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-010-1142-4 · Cited by 54 · see citing works
A parent‐focused early intervention program for autism: Who gets access?
Birkin, C., Anderson, A., Seymour, F. W., & Moore, D. W. (2008) · Journal of Intellectual & Developmental Disability · doi:10.1080/13668250802036746 · Cited by 53 · see citing works
A review of declared factors identified by parents of children with autism spectrum disorders (ASD) in making intervention decisions
Carlon, S., Carter, M., & Stephenson, J. R. (2012) · Research in Autism · doi:10.1016/j.rasd.2012.10.009 · Cited by 52 · see citing works
Factors Affecting Parental Decision-Making Regarding Interventions for Their Child With Autism
Hebert, E. B. (2014) · Focus on Autism and Other Developmental Disabilities · doi:10.1177/1088357614522291 · Cited by 47 · see citing works
Early Intervention Critical to Autism Treatment
Butter, E. M., Wynn, J. W., & Mulick, J. A. (2003) · Pediatric Annals · doi:10.3928/0090-4481-20031001-09 · Cited by 46 · see citing works
Quality Determinants of Services for Parents of Young Children with Autism Spectrum Disorders
Rivard, M., Lépine, A., Mercier, C., & Morin, M. (2014) · Journal of Child and Family Studies · doi:10.1007/s10826-014-0041-2 · Cited by 45 · see citing works
Parent perceptions of autism severity: Exploring the social ecological context
Hock, R., & Ahmedani, B. K. (2012) · Disability and Health Journal · doi:10.1016/j.dhjo.2012.06.002 · Cited by 42 · see citing works
Aligning over the child: Parenting alliance mediates the association of autism spectrum disorder atypicality with parenting stress
Hill-Chapman, C. R., Herzog, T. K., & Maduro, R. S. (2013) · Research in Developmental Disabilities · doi:10.1016/j.ridd.2013.01.004 · Cited by 41 · see citing works
Decision-Making Regarding Early Intervention by Parents of Children with Autism Spectrum Disorder
Carlon, S., Carter, M., & Stephenson, J. R. (2014) · Journal of Developmental and Physical Disabilities · doi:10.1007/s10882-014-9415-z · Cited by 35 · see citing works
The Role of Parenting Stress in Discrepancies Between Parent and Teacher Ratings of Behavior Problems in Young Children with Autism Spectrum Disorder
Reed, P., & Osborne, L. A. (2012) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-012-1594-9 · Cited by 35 · see citing works
Experiences Delivering a Marital Intervention for Couples With Children With Autism Spectrum Disorder
Ramisch, J., Timm, T. M., Hock, R., & Topor, J. A. (2013) · American Journal of Family Therapy · doi:10.1080/01926187.2012.713816 · Cited by 26 · see citing works
Access to Treatment for Toddlers With Autism Spectrum Disorders
Braddock, B. A., & Twyman, K. A. (2014) · Clinical Pediatrics · doi:10.1177/0009922814521284 · Cited by 26 · see citing works
Problem Solving to Promote Treatment Adherence
Nezu, A. M., Nezu, C. M., & Perri, M. G. (2006) · Sage eBooks · doi:10.4135/9781452225975.n9 · Cited by 24 · see citing works
Health and social context: Social capital's utility as a construct for nursing and health promotion
Looman, W. S., & Lindeke, L. L. (2005) · Journal of Pediatric Health Care · doi:10.1016/j.pedhc.2004.09.006 · Cited by 22 · see citing works
The Role of Self-Help Voluntary Associations for Women Empowerment and Social Capital: The Experience of Women’s Iddirs (Burial Societies) in Ethiopia
Teshome, E., Zenebe, M., Metaferia, H., & Biadgilign, S. (2011) · Journal of Community Health · doi:10.1007/s10900-011-9503-2 · Cited by 19 · see citing works
Health and social context: Social capital's utility as a construct for nursing and health promotion
Looman, W. S., & Lindeke, L. L. (2005) · Journal of Pediatric Health Care · doi:10.1016/s0891-5245(04)00277-9 · Cited by 18 · see citing works
Role of Pediatricians in Fostering Resilience in Parents of Children with Autism Spectrum Disorders
Zand, D. H., Braddock, B. A., Baig, W., Deasy, J., & Maxim, R. A. (2013) · The Journal of Pediatrics · doi:10.1016/j.jpeds.2013.06.074 · Cited by 15 · see citing works
Ethnic Disparities in Early Autism Assessment: A Large Scale Screening Study of Infants and Toddlers
Williams, L. W., Matson, J. L., Beighley, J. S., & Konst, M. J. (2014) · Journal of Developmental and Physical Disabilities · doi:10.1007/s10882-014-9406-0 · Cited by 12 · see citing works
Contentment in “Songs of the Gorilla Nation
Bonis, S. A. (2012) · Advances in Nursing Science · doi:10.1097/ans.0b013e3182626076 · Cited by 5 · see citing works
Self-citation
Eric Vernberg and Bridget Biggs: Preventing and Treating Bullying and Victimization
Horner, R. (2010) · Journal of Child and Family Studies · doi:10.1007/s10826-010-9382-7 · Cited by 5 · see citing works

Flagged first, then by citations

Sorted by citations

Psychopathology in parents of children with autism spectrum disorder: A systematic review and meta-analysis of prevalence
Schnabel, A., Youssef, G. J., Hallford, D. J., Hartley, E., McGillivray, J., Stewart, M., Forbes, D., & Austin, D. (2019) · Autism · doi:10.1177/1362361319844636 · Cited by 217 · see citing works
“Although systematic reviews of the literature on parents of children with ASD have focused on parenting stress (Bonis, 2016; Cachia, Anderson, & Moore, 2016; Corcoran, Berry, & Hill, 2015; Hayes & Watson, 2013; Karst & Van Hecke, 2012), quality of life (Vasilopoulou & Nisbet, 2016) and social…”
BackgroundInfluential
Stress and emotional wellbeing of parents due to change in routine for children with Autism Spectrum Disorder (ASD) at home during COVID-19 pandemic in Saudi Arabia
Alhuzimi, T. E. (2020) · Research in Developmental Disabilities · doi:10.1016/j.ridd.2020.103822 · Cited by 218 · see citing works
Perceptions of Families of Individuals with Autism Spectrum Disorder during the COVID-19 Crisis
Manning, J. H., Billian, J., Matson, J., Allen, C., & Soares, N. S. (2020) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-020-04760-5 · Cited by 203 · see citing works
“Parenting a child with ASD can be stressful (Bonis 2016); meeting the needs of individuals with ASD can be challenging due to the severity and chronicity of the condition, the mental health comorbidities, intensive interventions needed by persons with ASD and the difficulty obtaining services…”
Background
Impacto de la COVID-19 en niños con trastorno del espectro autista
Amorim, R., Catarino, S., Miragaia, P., Ferreras, C., Viana, V., & Guardiano, M. (2020) · Revista de Neurología · doi:10.33588/rn.7108.2020381 · Cited by 165 · see citing works
Parental Stress in Families of Children With Disabilities
Hsiao, Y. (2017) · Intervention in School and Clinic · doi:10.1177/1053451217712956 · Cited by 147 · see citing works
The multifaceted role of mitochondria in autism spectrum disorder
Халиулин, И. Г., Hamoudi, W., & Amal, H. (2024) · Molecular Psychiatry · doi:10.1038/s41380-024-02725-z · Cited by 122 · see citing works
“ASD is likely to affect the entire family of the person diagnosed with this disorder due to a signi ﬁ cant level of stress associated with the permanency of this disorder, the accompanying co-morbidities, and insuf ﬁ cient health support for autistic patients [8, 9].”
Parenting and Future Anxiety: The Impact of Having a Child with Developmental Disabilities
Bujnowska, A. M., Rodríguez, C., García, T., Areces, D., & Marsh, N. V. (2019) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph16040668 · Cited by 91 · see citing works
Efficacy of a Smartphone App Intervention for Reducing Caregiver Stress: Randomized Controlled Trial
Fuller‐Tyszkiewicz, M., Richardson, B., Little, K., Teague, S. J., Hartley-Clark, L., Capic, T., Khor, S., Cummins, R. A., Olsson, C. A., & Hutchinson, D. M. (2020) · JMIR Mental Health · doi:10.2196/17541 · Cited by 85 · see citing works
“…shown that parents of children with disabilities, particularly autism spectrum disorder, experience highly elevated levels of depression and stress [79,80], with very few interventions targeting the mental health needs of this population and fewer again being offered through digital platforms [81].”
Background
Parental Quality of Life and Involvement in Intervention for Children or Adolescents with Autism Spectrum Disorders: A Systematic Review
Musetti, A., Manari, T., Dioni, B., Raffin, C., Bravo, G., Mariani, R., Esposito, G., Dimitriou, D., Plazzi, G., Franceschini, C., et al. (2021) · Journal of Personalized Medicine · doi:10.3390/jpm11090894 · Cited by 91 · see citing works
“Although a lot of research has been conducted to examine the relationship between the characteristics of offspring with ASD, distress and psychological difficulties of family members [12,13], less attention has been paid to the impact of the characteristics of the intervention on family functioning [14,15].”
Background
Parental stress and resilience in CHD: a new frontier for health disparities research
Lisanti, A. J. (2018) · Cardiology in the Young · doi:10.1017/s1047951118000963 · Cited by 83 · see citing works
“The financial burden arising from the child’s chronic illness has been noted in cardiac and non-cardiac populations.(36,37) Spijkerboer et al(38) found that low socioeconomic status classified by occupation type influenced greater psychologic distress in parents of children treated for CHD.”
Background
Mental health of parents of children with autism spectrum disorder during COVID-19 pandemic: A systematic review
Yılmaz, B., Azak, M., & Şahin, N. H. (2021) · World Journal of Psychiatry · doi:10.5498/wjp.v11.i7.388 · Cited by 76 · see citing works
Rational Emotive Family Health Therapy for Reducing Parenting Stress in Families of Children with Autism Spectrum Disorders: A Group Randomized Control Study
Ede, M. O., Anyanwu, J. I., Onuigbo, L. N., Ifelunni, C. O., Albi-Oparaocha, F. C., Okenyi, E. C., Agu, M. A., Ugwuanyi, L. T., Ugwuanyi, C. S., Eseadi, C., et al. (2020) · Journal of Rational-Emotive & Cognitive-Behavior Therapy · doi:10.1007/s10942-020-00342-7 · Cited by 74 · see citing works
A qualitative study on the experience of stigma for Chinese parents of children with autism spectrum disorder
Ng, C. S. M., & Ng, S. S. L. (2022) · Scientific Reports · doi:10.1038/s41598-022-23978-0 · Cited by 70 · see citing works
The Effect of a Combined Gluten- and Casein-Free Diet on Children and Adolescents with Autism Spectrum Disorders: A Systematic Review and Meta-Analysis
Keller, A., Rimestad, M. L., Rohde, J. F., Petersen, B. H., Korfitsen, C. B., Tarp, S., Lauritsen, M. B., & Händel, M. N. (2021) · Nutrients · doi:10.3390/nu13020470 · Cited by 78 · see citing works
“The lack of efficacy of the diet may be explained by low adherence to the diet restriction due to severity of ASD in the child and/or parental difficulties with supplying GFCF food, possibly due to the added burden of a strict elimination diet in addition to the often stressed family life of having children with ASD […”
Background
Relationship between Psychological Capital and Psychological Well-Being of Direct Support Staff of Specialist Autism Services. The Mediator Role of Burnout
Manzano-García, G., & Ayala, J.-C. (2017) · Frontiers in Psychology · doi:10.3389/fpsyg.2017.02277 · Cited by 66 · see citing works
The Effects of Parent Training Programs on the Quality of Life and Stress Levels of Parents Raising a Child with Autism Spectrum Disorder: a Systematic Review of the Literature
Lichtlé, J., Downes, N., Engelberg, A., & Cappe, É. (2019) · Review Journal of Autism and Developmental Disorders · doi:10.1007/s40489-019-00190-x · Cited by 65 · see citing works
“…that parents of children with ASD present significantly higher levels of stress when compared to parents of typically developing children [see Bonis 2016 for a review and Hayes and Watson 2013 for a metaanalysis] or present other developmental disorders, as seen, for example, among parents…”
BackgroundInfluential
Evaluating the Role of Perceived Stress, Social Support, and Resilience in Predicting the Quality of Life among the Parents of Disabled Children
Savari, K., Naseri, M., & Savari, Y. (2021) · International Journal of Disability Development and Education · doi:10.1080/1034912x.2021.1901862 · Cited by 64 · see citing works
“There are major challenges in routine care planning in children with disabilities which affect parents’ health and ability in managing children and family needs (Bonis, 2016).”
Background
Parenting preschoolers with autism: Socioeconomic influences on wellbeing and sense of competence
Mathew, N. E., Burton, K., Schierbeek, A., Črnčec, R., Walter, A., & Eapen, V. (2019) · World Journal of Psychiatry · doi:10.5498/wjp.v9.i2.30 · Cited by 62 · see citing works
Parents’ perceptions of raising children with autism spectrum disorders in the United States and Arab countries: A comparative review
Khateeb, J. M. A., Kaczmarek, L. A., & Alhadidi, M. S. (2019) · Autism · doi:10.1177/1362361319833929 · Cited by 60 · see citing works
“Thus, during the aforementioned search process we found a total of 10 systematic reviews (Bonis, 2016; Bonis & Sawin, 2016; Corcoran, Berry, & Hill, 2015; DePape & Lindsay, 2015; Eapen & Guan, 2017; Karst & Van Hecke, 2012; Lai & Oei, 2014; Ooi, Ong, Jacob, & Khan, 2016; Tint & Weiss, 2016; Vasilopoulou & Nisbet, 2016…”
Psychological Impact of COVID-19 Outbreak on Families of Children with Autism Spectrum Disorder and Typically Developing Peers: An Online Survey
Levante, A., Petrocchi, S., Bianco, F., Castelli, I., Colombi, C., Keller, R., Narzisi, A., Masi, G., & Lecciso, F. (2021) · Brain Sciences · doi:10.3390/brainsci11060808 · Cited by 60 · see citing works
“A huge amount of literature has examined general distress in families with children with autism spectrum disorder (ASD) [1].”
Background
Interventions to Improve Outcomes for Parents of Children with Autism Spectrum Disorder: A Meta-Analysis
MacKenzie, K. T., & Eack, S. M. (2021) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-021-05164-9 · Cited by 60 · see citing works
“…such as the lengthy and complex diagnostic process, socioeconomic status and financial burden, identifying, securing, and maintaining appropriate support services, professional and social support, worry about the future, and public stigma (Bones et al., 2019; Bonis, 2016; Prata et al., 2019).”
Background
The Effect of Autism Spectrum Disorder on Family Mental Health: Challenges, Emotional Impact, and Coping Strategies
Amate, J. J. S., & de la Rosa, A. L. (2024) · Brain Sciences · doi:10.3390/brainsci14111116 · Cited by 54 · see citing works
Self-Compassion: a Protective Factor for Parents of Children with Autism Spectrum Disorder
Torbet, S., Proeve, M., & Roberts, R. M. (2019) · Mindfulness · doi:10.1007/s12671-019-01224-5 · Cited by 54 · see citing works
“Some parents experience criticism and judgement from their family members regarding their child’s behaviours (Bonis 2016), and friends and family members may make comparisons between children with ASD and typically developing children (Neely-Barnes et al. 2011), demonstrating lack of understanding…”
BackgroundResultInfluential
“I Know How to Advocate”: Parents’ Experiences in Advocating for Children and Youth Diagnosed With Autism Spectrum Disorder
Smith-Young, J., Chafe, R., Audas, R., & Gustafson, D. L. (2022) · Health Services Insights · doi:10.1177/11786329221078803 · Cited by 53 · see citing works
Externalizing Behaviors are Associated with Increased Parenting Stress in Caregivers of Young Children with Autism
Olson, L., Chen, B., Ibarra, C., Wang, T., Mash, L. E., Linke, A. C., Kinnear, M., & Fishman, I. (2021) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-021-04995-w · Cited by 51 · see citing works
“At the same time, families of children on the autism spectrum often face lost wages and lower incomes as a result of one parent (most often, a mother) leaving the workforce in order to manage their child’s care (Bonis, 2016).”
BackgroundInfluential
Parents’ views and experiences of the autism spectrum disorder diagnosis of their young child: a longitudinal interview study
Jacobs, D., Steyaert, J. G., Dierickx, K., & Hens, K. (2019) · European Child & Adolescent Psychiatry · doi:10.1007/s00787-019-01431-4 · Cited by 47 · see citing works
A Systematic Review: Acceptance and Commitment Therapy for the Parents of Children and Adolescents with Autism Spectrum Disorder
Juvin, J., Sadeg, S., Julien-Sweerts, S., & Zebdi, R. (2022) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-021-04923-y · Cited by 44 · see citing works
Parental stress and adjustment in the context of rare genetic syndromes: A scoping review
Fitzgerald, J., & Gallagher, L. (2021) · Journal of Intellectual Disabilities · doi:10.1177/1744629521995378 · Cited by 45 · see citing works
“…family research has focused on intellectual disability irrespective of aetiology or has focused on more common conditions linked with intellectual disability such as autism spectrum disorder (ASD) or Down syndrome (Bonis, 2016; Fairthorne et al., 2016; Hill and Rose, 2009; Phillips et al., 2017).”
Background
Brief Report: Mindfulness Training for Chinese Adolescents with Autism Spectrum Disorder and Their Parents in Hong Kong
Ho, R. Y. F., Zhang, D., Chan, S. K. C., Gao, T. T., Lee, E. K. P., Lo, H. H. M., Yeung, P. W. H. A., Lai, K. Y. C., Bögels, S. M., de Bruin, E. I., et al. (2021) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-020-04729-4 · Cited by 40 · see citing works
“Also, previous studies have shown parents of children with ASD experience higher levels of stress, rumination, and poorer well-being than parents of children with typical development (Bonis 2016; Carpita et al.”
Background
CheerBrush: A Novel Interactive Augmented Reality Coaching System for Toothbrushing Skills in Children with Autism Spectrum Disorder
Zheng, Z., Sarkar, N., Swanson, A. R., Weitlauf, A. S., Warren, Z. E., & Sarkar, N. (2021) · ACM Transactions on Accessible Computing · doi:10.1145/3481642 · Cited by 38 · see citing works
Effects of Acceptance and Commitment Training Plus Behavior Parent Training on Parental Implementation of Autism Treatment
Andrews, M., García, Y., Catagnus, R. M., & Gould, E. R. (2021) · The Psychological Record · doi:10.1007/s40732-021-00496-5 · Cited by 37 · see citing works
“Moreover, parents’ decisions on their children’s treatment can be affected by high levels of stress (Bonis, 2016).”
BackgroundInfluential
What is Parental Stress Connected to in Families of Children With Autism Spectrum Disorder? Implications for Parents’ Interventions
Renzo, M. D., Guerriero, V., Petrillo, M., & di Castelbianco, F. B. (2021) · Journal of Family Issues · doi:10.1177/0192513x211030735 · Cited by 36 · see citing works
“These high levels of stress can significantly compromise the parent–child relationship, showing the strain related to caring for a child with ASD (Bonis, 2016; Shepherd, Landon, Taylor, & Goedeke, 2018).”
Background
Emotion regulation, parental stress and family functioning: Families of children with disabilities vs normative families
Priego-Ojeda, M., & Rusu, P. P. (2023) · Research in Developmental Disabilities · doi:10.1016/j.ridd.2023.104548 · Cited by 35 · see citing works
Effects of the early phase of COVID-19 on the autistic community in Sweden: a qualitative multi-informant study linking to ICF
Fridell, A., Norrman, H. N., Girke, L., & Bölte, S. (2022) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph19031268 · Cited by 31 · see citing works
Impact of COVID-19 pandemic on families living with autism: An online survey
Isensee, C., Schmid, B., Marschik, P. B., Zhang, D., & Poustka, L. (2022) · Research in Developmental Disabilities · doi:10.1016/j.ridd.2022.104307 · Cited by 34 · see citing works
Risk and protective factors of quality of life for children with autism spectrum disorder and their families during the COVID-19 lockdown. An Italian study
Logrieco, M. G., Casula, L., Ciuffreda, G. N., Novello, R. L., Spinelli, M., Lionetti, F., Nicolì, I., Fasolo, M., Valeri, G., & Vicari, S. (2021) · Research in Developmental Disabilities · doi:10.1016/j.ridd.2021.104130 · Cited by 34 · see citing works
Understanding the prevalence and manifestation of anxiety and other socio-emotional and behavioural difficulties in children with Developmental Language Disorder
Burnley, A., St Clair, M., Bedford, R., Wren, Y., & Dack, C. (2023) · Journal of Neurodevelopmental Disorders · doi:10.1186/s11689-023-09486-w · Cited by 33 · see citing works
“It is also remarkable, given the emotional strain that raising a child with NDDs can put on the family [132].”
Background
Resilience and Coping with Stress and Marital Satisfaction of the Parents of Children with ASD during the COVID-19 Pandemic
Gagat‐Matuła, A. (2022) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph191912372 · Cited by 33 · see citing works
“The high level of stress associated with the pandemic worsened relationships in families in which a child with ASD was being brought up [11,12], especially since these families experienced high levels of stress even before the pandemic.”
Background
Exploring the Lived Experiences of Fathers of Children on the Autism Spectrum: A Narrative Inquiry
Camilleri, L. J. (2022) · SAGE Open · doi:10.1177/21582440221089927 · Cited by 35 · see citing works
“Research regarding parents has increased markedly in the past years, particularly since it is argued that an increased understanding of the challenges parents face could provide direction for research (Bonis, 2016; Hayes & Watson, 2013).”
Background
Prognostic early snapshot stratification of autism based on adaptive functioning
Mandelli, V., Landi, I., Busuoli, E. M., Courchesne, E., Pierce, K., & Lombardo, M. V. (2023) · Nature Mental Health · doi:10.1038/s44220-023-00056-6 · Cited by 30 · see citing works
End-user perspectives on the development of an online intervention for parents of children on the autism spectrum
Hermaszewska, S., & Sin, J. (2021) · Autism · doi:10.1177/1362361320984895 · Cited by 32 · see citing works
“Where interventions have overcome such barriers, parents often do not have the flexibility and time to attend regular meetings or take part in studies assessing intervention effectiveness (Arksey et al., 2003; Bonis, 2016; McGill et al., 2006; Spain et al., 2017).”
Background
A Systematic Review of Parental Self-Efficacy in Parents of Autistic Children
Brennan, J., Ward, O. F., Tomeny, T. S., & Davis, T. E. (2024) · Clinical Child and Family Psychology Review · doi:10.1007/s10567-024-00495-2 · Cited by 37 · see citing works
“…accompanying life changes (e.g., changes to the parent’s relationships with others, their daily routines, and their hopes for their child’s future; Bonis, 2016; Dale et al., 2006; Galpin et al., 2018; Russell & McCloskey, 2016; Smith-Young et al., 2022), parenting stress and PSE may be more…”
Influential
Primary care and mental health: Where do we go from here?
Moise, N., Wainberg, M. L., & Shah, R. N. (2021) · World Journal of Psychiatry · doi:10.5498/wjp.v11.i7.271 · Cited by 33 · see citing works
Associations among family burden, optimism, services received and unmet need within families of children with ASD
Lopez, K., Reed, J., & Magaña, S. (2018) · Children and Youth Services Review · doi:10.1016/j.childyouth.2018.12.027 · Cited by 30 · see citing works
Weight status, diet quality, perceived stress, and functional health of caregivers of children with autism spectrum disorder
Li, X. S., Pinto‐Martin, J. A., Leis, A. M., Chittams, J. L., & Kral, T. V. E. (2017) · Journal for Specialists in Pediatric Nursing · doi:10.1111/jspn.12205 · Cited by 29 · see citing works
Relational Turbulence and Marital Communication When Children with Autism Start School: A Longitudinal Dyadic Diary Study
Brisini, K. S. C., & Solomon, D. H. (2019) · Health Communication · doi:10.1080/10410236.2019.1567445 · Cited by 28 · see citing works
“Reviews of research and meta-analytic studies provide convincing evidence that parents of children with autism experience considerably more stress than parents of typically developing children (Bonis, 2016), and this exposure to chronic stress undermines parental health (Miodrag & Hodapp, 2010).”
Background
Parent training intervention for autism symptoms, functional emotional development, and parental stress in children with autism disorder: A randomized clinical trial
Akhani, A., Dehghani, M. R., Gharraee, B., & Shooshtari, M. H. (2021) · Asian Journal of Psychiatry · doi:10.1016/j.ajp.2021.102735 · Cited by 28 · see citing works
A Review of Parent-Implemented Early Start Denver Model for Children with Autism Spectrum Disorder
Jhuo, R.-A., & Chu, S. (2022) · Children · doi:10.3390/children9020285 · Cited by 28 · see citing works
Brief Report: Above and Beyond Safety: Psychosocial and Biobehavioral Impact of Autism-Assistance Dogs on Autistic Children and their Families
Tseng, A. (2022) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-021-05410-0 · Cited by 27 · see citing works
“…and economic circumstances (e.g., access to resources, stigma associated with mental health, financial burden of care), can compound to distress parents and affect both child and overall family outcomes by means of transactional pathways (Bonis, 2016; Iadarola et al., 2019; Rodriguez et al., 2019).”
BackgroundInfluential
From ‘Refrigerator Mothers’ to Empowered Advocates: The Evolution of the Autism Parent
Cleary, M. L., West, S., & McLean, L. (2022) · Issues in Mental Health Nursing · doi:10.1080/01612840.2022.2115594 · Cited by 27 · see citing works
“Therapies that build skills such as social skills and communication can facilitate making of friends and prevention of bullying (Bonis, 2016; Laugeson et al., 2009) whilst participation in behavioural support strategies can equip parents with the tools to assist with emotional regulation and…”
BackgroundInfluential
Backing the backbones—A feasibility study on the effectiveness of dance movement psychotherapy on parenting stress in caregivers of children with Autism Spectrum Disorder
Aithal, S., Karkou, V., Kuppusamy, G., & Pushpavathi, M. (2019) · The Arts in Psychotherapy · doi:10.1016/j.aip.2019.04.003 · Cited by 26 · see citing works
‘I just rolled up my sleeves’: Mothers’ perspectives on raising girls on the autism spectrum
Fowler, K., & O’Connor, C. (2020) · Autism · doi:10.1177/1362361320956876 · Cited by 26 · see citing works
“Parental responses can depend on many factors, including the severity of challenging behaviours, access to services, socio-economic status and lone parenting (Bonis, 2016; Bromley et al., 2004; Stuart & McGrew, 2009).”
Background
Couples’ Experiences of Parenting a Child After an Autism Diagnosis: A Qualitative Study
Downes, N., Lichtlé, J., Lamore, K., Orêve, M.-J., & Cappe, É. (2020) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-020-04744-5 · Cited by 26 · see citing works
“For example, stress leads to more conflict and affects parents’ ability to support each other to manage their child’s daily care (Thullen and Bonsall 2017; Bonis 2016).”
BackgroundInfluential
Social Support and Parenting Stress in Hispanic Parents of Children with Autism Spectrum Disorder
Martinez, V. C., & Turnage, D. M. (2022) · Issues in Mental Health Nursing · doi:10.1080/01612840.2022.2100949 · Cited by 26 · see citing works
“Particularly, child problem behaviors (Bonis, 2016; Enea & Rusu, 2020; McStay et al., 2014), such as hyperactivity, aggression, inattention, destruction, tantrums, and environmental conditions (Derguy et al.”
BackgroundResultInfluential
Experiences Of Immigrant Parents In Sweden Participating In A Community Assessment And Intervention Program For Preschool Children With Autism
Nilses, Å., Jingrot, M., Linnsand, P., Gillberg, C., & Nygren, G. (2019) · Neuropsychiatric Disease and Treatment · doi:10.2147/ndt.s221908 · Cited by 24 · see citing works
“Parents of children with ASD often experience daily life as stressful and suffer mental health problems to a greater extent than other parents.(20,21) Raising a child with autism is described as strenuous and challenging,(22) but that it can also lead to personal growth.”
Background
Relationship between Comorbid Psychopathology in Children and Adolescents with Autism Spectrum Disorder and Parental Well-being
Lanyi, J., Mannion, A., Chen, J. L., & Leader, G. (2021) · Developmental Neurorehabilitation · doi:10.1080/17518423.2021.1922529 · Cited by 25 · see citing works
“A recently published review concluded that parents of those with an ASD diagnosis experienced higher levels of stress than any other parent group.(40)”
Background
Stress and Anxiety Among Parents of Transition-Aged Children with Autism Spectrum Disorder: a Systematic Review of Interventions and Scales
Agarwal, R., Wuyke, G. M., Sharma, U., Burke, S. L., Howard, M. M., Li, T., Sánchez, M., & Bastida, E. (2022) · Review Journal of Autism and Developmental Disorders · doi:10.1007/s40489-022-00340-8 · Cited by 26 · see citing works
“…is imperative (Agbaria, 2020; Sopaul, 2019) given that unaddressed stress and anxiety can have adverse effects on the family stemming from the interdependence in a parent–child relationship (Barker et al., 2011; Bones et al., 2019; Bonis, 2016; Dardas & Ahmad, 2014; Reichman et al., 2008).”
Psychometric evaluation of the revised child and family quality of life questionnaire (CFQL-2)
Frazier, T. W., Hyland, A. C., Markowitz, L. A., Speer, L. L., & Diekroger, E. A. (2019) · Research in Autism · doi:10.1016/j.rasd.2019.101474 · Cited by 24 · see citing works
Concordance within parent couples’ perception of parental stress symptoms among parents to 1-18-year-olds with physical or mental health problems
Rayce, S. B., Pontoppidan, M., & Nielsen, T. (2020) · PLoS ONE · doi:10.1371/journal.pone.0244212 · Cited by 24 · see citing works
Parental stress and dyadic adjustment among parents of children with ASD: Moderating effects of dyadic coping and perceived social support
Fallahchai, R., & Fallahi, M. (2022) · Research in Developmental Disabilities · doi:10.1016/j.ridd.2022.104192 · Cited by 24 · see citing works
Using Bayesian methodology to explore the profile of mental health and well-being in 646 mothers of children with 13 rare genetic syndromes in relation to mothers of children with autism
Adams, D., Hastings, R. P., Alston‐Knox, C., Cianfaglione, R., Eden, K., Felce, D., Griffith, G. M., Moss, J. F., Stinton, C., & Oliver, C. (2018) · Orphanet Journal of Rare Diseases · doi:10.1186/s13023-018-0924-1 · Cited by 24 · see citing works
Emotion dysregulation in autism: Severity and correlates in early childhood
Northrup, J. B., Hartman, A. G., MacKenzie, K. T., Sivathasan, S., Eldeeb, S. M., & Mazefsky, C. A. (2024) · Autism Research · doi:10.1002/aur.3264 · Cited by 23 · see citing works
“…are at least twice as common for autistic children compared to non-autistic children (Reynolds et al., 2019), and parents of autistic children are at significant increased risk for mental health (Bonis, 2016; Estes et al., 2009) and socioeconomic (Montes & Halterman, 2008a, 2008b) challenges.”
Empowerment in Polish fathers of children with autism and Down syndrome: the role of social support and coping with stress – a preliminary report
Pisula, E., & Banasiak, A. (2019) · Journal of Intellectual Disability Research · doi:10.1111/jir.12681 · Cited by 23 · see citing works
Autistic Mothers of Autistic Children: A Preliminary Study in an Under-Researched Area
Adams, D., Stainsby, M., & Paynter, J. M. (2021) · Autism in Adulthood · doi:10.1089/aut.2020.0078 · Cited by 23 · see citing works
“MS ﬁrst matched the participants on factors that have shown the strongest associations with parental stress; behavioral challenges 18–20 and adaptive behavior skills.”
Parent perceptions of a group telepractice communication intervention for autism
Garnett, R., Davidson, B. J., & Eadie, P. A. (2022) · Autism & Developmental Language Impairments · doi:10.1177/23969415211070127 · Cited by 24 · see citing works
“Despite the known impact of parent stress on family functioning and managing a child with autism (Bonis, 2016), there has been limited research into the impact of parent-implemented intervention on parent stress levels (Beaudoin et al.”
Background
Scoping Review on Play-Based Interventions in Autism Spectrum Disorder
López-Nieto, L., Gabucio, L. M. C., Collado, L. T., & de la Hera, M. G. (2022) · Children · doi:10.3390/children9091355 · Cited by 28 · see citing works
Mental Health and Neurodevelopmental Disorders: Examining the Roles of Familism, Social Support, and Stigma in Latinx Caregivers
Mercado, A., Morales, F. R., Torres, A., Chen, R. K., Nguyen-Finn, K. L., & Dávalos-Picazo, G. (2020) · Journal of Developmental and Physical Disabilities · doi:10.1007/s10882-020-09765-7 · Cited by 22 · see citing works
“Indeed, much research has documented diminished psychological well-being among parents and family members caring for children diagnosed with NDD (e.g., Bonis 2016; Craig et al. 2016; Dave et al. 2014; Miodrag and Hodapp 2010; Park and Kim 2019; Scherer et al. 2019).”
Background
The relationship between parental stress and mastery, forgiveness, and social support among parents of children with autism
Weinberg, M., Gueta, N., Weinberg, J., Much, M. A., Akawi, A., Sharkia, R. A., & Mahajnah, M. M. (2020) · Research in Autism · doi:10.1016/j.rasd.2020.101712 · Cited by 22 · see citing works
The Route of Stress in Parents of Young Children with and without Autism: A Path-Analysis Study
Leonardi, E., Cerasa, A., Servidio, R. C., Costabile, A., Famà, F. I., Carrozza, C., Spadaro, L., Scifo, R., Baieli, S., Aiello, S., et al. (2021) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph182010887 · Cited by 22 · see citing works
Battle weary/battle ready: A phenomenological study of parents' lived experiences caring for children with autism and their safety concerns
Celia, T., Freysteinson, W. M., Fredland, N., & Bowyer, P. (2019) · Journal of Advanced Nursing · doi:10.1111/jan.14213 · Cited by 22 · see citing works
Parenting a Child with Autism: Considering the Stresses, Supports and Implications for Social Work Practice
McCafferty, P., & McCutcheon, J. (2020) · Child Care in Practice · doi:10.1080/13575279.2020.1765145 · Cited by 21 · see citing works
“tive review of 132 studies identified that the largest concentration of the literature related to parenting a child(ren) with ASD focused on stress (Bonis, 2016).”
Background
Associations Between Child Sleep Problem Severity and Maternal Well-Being in Children with Autism Spectrum Disorder
Martin, C. A., Sciberras, E., Papadopoulos, N. V., Engel, L., Hiscock, H., Williams, K. J., Howlin, P., McGillivray, J., & Rinehart, N. (2020) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-020-04726-7 · Cited by 21 · see citing works
“…attend medical appointments and address school concerns; differences in parental coping styles, with mothers generally using emotional coping and fathers avoidance coping; poor self-efficacy; relationship breakdown; and isolation from family and friends (Bonis 2016; Vasilopoulou and Nisbet 2016).”
BackgroundInfluential
Parenting stress among caregivers of children with neurodevelopmental disorders: A cross-sectional study in Bangladesh
Haque, M. A., Salwa, M., Sultana, S., Tasnim, A. F., Towhid, M. I. I., Karim, M. R., & Mamun, M. A. A. (2021) · Journal of Intellectual Disabilities · doi:10.1177/17446295211002355 · Cited by 23 · see citing works
“In a review paper, Bonis (2016) also described 6 Journal of Intellectual Disabil t es XX(X that this stressful situation is related to the feeling of confusion, denial, decision-making doubt, helplessness, and failure as a parent.”
Background
Self-reported Health-Related Quality of Life (HRQOL) and Anxiety Among Greek School-Age Siblings of Individuals with Autism Spectrum Disorders (ASD) in Relation to Parental Mental Health and Social Support
Koukouriki, E., & Soulis, S.-G. (2020) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-020-04395-6 · Cited by 22 · see citing works
COPARENTALIDADE NO CONTEXTO FAMILIAR DE CRIANÇAS COM TRANSTORNO DO ESPECTRO AUTISTA
Portes, J. R. M., & Vieira, M. L. (2020) · Psicologia em Estudo · doi:10.4025/psicolestud.v25i0.44897 · Cited by 20 · see citing works
“…de comportamentos dos filhos com TEA interferem nas interações no contexto familiar e podem contribuir para o aumento do estresse parental, principalmente nas mães dessas crianças em comparação com os sintomas de estresse referidos por pais de crianças com outras deficiências (Bonis, 2016).”
Background
Mothers’ perspectives of co-occurring fatigue in children with autism spectrum disorders
Keville, S., Meek, C., & Ludlow, A. (2021) · Fatigue Biomedicine Health & Behavior · doi:10.1080/21641846.2021.2008169 · Cited by 20 · see citing works
“The interplay between the severity and chronicity of ASD, comorbid mental health issues and often a lack of access to services, makes meeting the needs of individuals with ASD both challenging and stressful [2,3].”
Background
The spectrum of attitudes towards the spectrum of autism and its relationship to psychological distress in mothers of children with autism
Ferenc, K., Byrka, K., & Król, M. E. (2022) · Autism · doi:10.1177/13623613221081185 · Cited by 20 · see citing works
“The caregiver burden may be reliant on certain factors, such as emotional and instrumental support from others (Pozo et al., 2014) or access to services (Bonis, 2016).”
Background
Impact of Respite Care Services Availability on Stress, Anxiety and Depression in Military Parents who have a Child on the Autism Spectrum
Christi, R. A., Roy, D., Heung, R., & Flake, E. (2023) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-022-05704-x · Cited by 20 · see citing works
“Medical system-based concerns such as access to care, disparity of services, and perceived parental concerns regarding their health care providers’ knowledge of ASD and lack of communication with their provider have also been positively tied to increased parental stress (Bonis, 2016; Smith et al., 2020).”
BackgroundMethod
Stress and coping strategies for parenting children with hearing impairment and autism
Ishtiaq, N., Mumtaz, N., & Saqulain, G. (2020) · Pakistan Journal of Medical Sciences · doi:10.12669/pjms.36.3.1766 · Cited by 20 · see citing works
The Impact of a Brief Home-Based Intervention on Families with a Child with Autism Spectrum Disorder
Mullan, A., Boyd, K., & McConkey, R. (2020) · Journal of Developmental and Physical Disabilities · doi:10.1007/s10882-020-09768-4 · Cited by 20 · see citing works
“The emotional support provided by project staff (their ‘listening ear’) may account for this as previous research has suggested (Bonis 2016).”
Background
Living under psychosocial pressure: Perception of mothers of children with autism spectrum disorders
Ebadi, M., Samadi, S. A., Mardani‐Hamooleh, M., & Seyedfatemi, N. (2021) · Journal of Child and Adolescent Psychiatric Nursing · doi:10.1111/jcap.12310 · Cited by 19 · see citing works
A Brief Measure of Parental Wellbeing for Use in Evaluations of Family-Centred Interventions for Children with Developmental Disabilities
McConkey, R. (2020) · Children · doi:10.3390/children7090120 · Cited by 18 · see citing works
“Parents of children with developmental disabilities—mothers especially—often report a lower quality of life [1], poorer physical and mental health [2], increased stress [3] and impaired family functioning [4].”
Background
Urban and rural differences in needs, service use and satisfaction among caregivers of autistic children in Morocco
de Jonge, M. V., Boutjdir, M., El‐Korchi, T., Torres, H., Karpur, A., Shih, A. J., & Idrissi, A. E. (2023) · Autism · doi:10.1177/13623613221150086 · Cited by 18 · see citing works
“They continually prioritize the needs of their autistic child, over the needs of other family members or their own needs, and struggle with the burden of time management, work, and financial constrictions (Bonis, 2016; Boshoff et al., 2016; Gona et al., 2016).”
Background
Changing Directions and Expanding Horizons: Moving towards More Inclusive Healthcare for Parents of Children with Developmental Disabilities
Novak‐Pavlic, M., Rosenbaum, P., & Rezze, B. D. (2023) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph20216983 · Cited by 18 · see citing works
“The ﬁnancial and employment challenges, especially for mothers, have also been reported in other studies [38,46].”
BackgroundResultInfluential
Hyperscanning to explore social interaction among autistic minds
Zhou, X., & Wong, P. C. M. (2024) · Neuroscience & Biobehavioral Reviews · doi:10.1016/j.neubiorev.2024.105773 · Cited by 19 · see citing works
Identifying Depression in Parents of Children With Autism Spectrum Disorder: Recommendations for Professional Practice
Marshall, B. L., Kollia, B., Wagner, V. H., & Yablonsky, D. (2017) · Journal of Psychosocial Nursing and Mental Health Services · doi:10.3928/02793695-20171128-02 · Cited by 18 · see citing works
“depression, and depression has been identifi ed as being three times more likely in mothers of children with ASD (Bonis, 2016).”
Stress Experienced and Meaning-Making of Couples with Children with Autism Spectrum Disorder: A Phenomenological Study
Romney, J., Austin, K. L., Fife, S. T., Sanders, D., & Snyder, H. (2020) · American Journal of Family Therapy · doi:10.1080/01926187.2020.1813654 · Cited by 17 · see citing works
Depressive symptoms of autism spectrum disorder children’s siblings in Greece: Associations with parental anxiety and social support
Koukouriki, E., Soulis, S.-G., & Andreoulakis, E. (2020) · Autism · doi:10.1177/1362361320966847 · Cited by 17 · see citing works
“Specifically, parents of children with autism exhibit high levels of parenting stress (Bonis, 2016; Hayes & Watson, 2013) and affective disorders (Cohrs & Leslie, 2017; Fairthorne et al.”
BackgroundInfluential
Pivotal Response Treatment (PRT) parent group training for young children with autism spectrum disorder: a pilot study
de Korte, M. W. P., van Dongen‐Boomsma, M., Oosterling, I. J., Buitelaar, J. K., & Staal, W. (2022) · Scientific Reports · doi:10.1038/s41598-022-10604-2 · Cited by 16 · see citing works
Mother and child mental health over time in children with Autism and/or ADHD in the Longitudinal Study of Australian Children
May, T., & Williams, K. J. (2022) · Development and Psychopathology · doi:10.1017/s0954579422001067 · Cited by 16 · see citing works
Autism and ADHD: A Literature Review Regarding Their Impacts on Parental Divorce
Anchesi, S. D., Corallo, F., Cara, M. D., Quartarone, A., Catalioto, R., Cucinotta, F., & Cardile, D. (2023) · Children · doi:10.3390/children10030438 · Cited by 16 · see citing works
“[59], even positive factors can influence stress; in fact, they found that both limited prosocial behaviours and behavioural problems were associated with high levels of stress.”
Background
Autism in Taiwan and Thailand: Influences of Culture
Westby, C. E., Kai-mei, C., Cheng, L., Jithavech, P., & Maroonroge, S. (2024) · Neuropsychiatric Disease and Treatment · doi:10.2147/ndt.s462864 · Cited by 16 · see citing works
“52,53 Understanding stressors for children with ASD and their caregivers is essential for implementing interventions.”
Background
Innovations in practice: Adaptation of developmental and behavioral pediatric service in a tertiary center in Singapore during the COVID-19 pandemic
Mulay, K. V., Aishworiya, R., Lim, T. S. H., Tan, M. Y., Kiing, J. S. H., Chong, S. C., & Kang, Y. Q. (2020) · Pediatrics & Neonatology · doi:10.1016/j.pedneo.2020.09.003 · Cited by 16 · see citing works
“Caregivers of children with developmental needs experience immense stress at baseline.(16) Living in enclosed quarters with disruption to their daily routine is most likely to exacerbate this stress.”
Mainstream Preschool Teachers’ Skills at Identifying and Referring Children with Autism Spectrum Disorder (ASD)
Taresh, S. M., Ahmad, N. A., Roslan, S. B., Ma’rof, A. M., & Zaid, S. M. (2020) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph17124284 · Cited by 16 · see citing works
Self-efficacy as a mediator between involvement in intervention and quality of life in parents of children and adolescents with autism spectrum disorder
Fante, C., Zagaria, A., Dioni, B., Raffin, C., Capelli, F., Manari, T., Lenzo, V., Picione, R. D. L., & Musetti, A. (2024) · Research in Autism · doi:10.1016/j.rasd.2024.102351 · Cited by 15 · see citing works
Decision factors for community providers when referring very young children for autism evaluation
Rosenbaum, M. A., & Gabrielsen, T. P. (2018) · Research in Autism · doi:10.1016/j.rasd.2018.09.009 · Cited by 15 · see citing works
Fostering Resilience among Couples Coparenting a Young Child with Autism: An Evaluation of Together We Are Stronger
Mendez, L. M. R., Berkman, K. A., Lam, G. Y. H., & Dawkins, C. (2019) · American Journal of Family Therapy · doi:10.1080/01926187.2019.1624225 · Cited by 15 · see citing works
Intervention for Treating Depression in Parents of Children with Intellectual Disability of Down’s Syndrome: A Sample of Nigerian Parents
Ede, M. O., Okeke, C. I. O., & Obiweluozo, P. E. (2022) · Journal of Rational-Emotive & Cognitive-Behavior Therapy · doi:10.1007/s10942-022-00471-1 · Cited by 17 · see citing works
“Thus, pains, emotional distress, and depression are common among parents of children with varied disabilities (Ayers, 2012; Bonis, 2016; Hodapp & Dykens, 1997).”
Background
The impact of autism spectrum disorder on parent employment: Results from the r‐Kids study
Lynch, F. L., Bulkley, J. E., Varga, A. M., Crawford, P. M., Croen, L., Daida, Y. G., Fombonne, E. J., Hatch, B., Massolo, M. L., & Dickerson, J. F. (2022) · Autism Research · doi:10.1002/aur.2882 · Cited by 16 · see citing works
“…lifelong neurodevelopmental disorder, the caregiving burden for parents is often very high with increased parental stress and decreased parenting efficacy for both mothers and fathers (Baker-Ericzén et al., 2005; Bonis, 2016; Dabrowska & Pisula, 2010; Karst & Van Hecke, 2012; Picardi et al., 2018).”
Background
Relationship between caregiver burden and basic and instrumental activities of daily living among compound and noncompound caregivers
Marsack‐Topolewski, C. N. (2021) · Journal of Family Social Work · doi:10.1080/10522158.2020.1861157 · Cited by 15 · see citing works
“Due to the social, communication, and behavioral challenges associated with ASD (Koegel et al., 2016; Poon & Sidhu, 2017), many parents are tasked with distinct roles to manage these issues that impact their loved one with ASD (Bonis, 2016).”
Background

Parents of Children with Autism Spectrum Disorder: a systematic review
Saccà, A., Cavallini, F., & Cavallini, M. C. (2019) · Journal of Clinical & Developmental Psychology · doi:10.6092/2612-4033/0110-2174 · Cited by 17 · see citing works
Risks and Protective Factors for Stress Self-Management in Parents of Children With Autism Spectrum Disorder: An Integrated Review of the Literature
Bonis, S. A., & Sawin, K. J. (2016) · Journal of Pediatric Nursing · doi:10.1016/j.pedn.2016.08.006 · Cited by 66 · see citing works
Self-citation
Stress in parents of preschoolers with Autism Spectrum Disorders: an update review
Espinosa-Díaz, N., Vega-Arce, M., Jara, M. I., & Garrido, F. (2024) · Boletín Médico del Hospital Infantil de México · doi:10.24875/bmhim.23000182 · Cited by 1 · see citing works
Parental stress and social life in the Autism Spectrum Disorders (ASD )
Isaraj, A. (2023) · IRIS Research product catalog (Sapienza University of Rome)
Parental Stress Among Caregivers of Children with Autism Spectrum Disorder: Systematic Review
Al-Medawi, M. A., Alshehri, M. M., & Almasodi, M. S. (2025) · Medical Science · doi:10.54905/disssi.v29i165.e220ms3751

Authors: Bonis, S.
Affiliations: University of Wisconsin–Milwaukee (US)
Corresponding author: Bonis, Susan
ORCID: Bonis, Susan
Venue: Issues in Mental Health Nursing
Publisher: Informa UK Limited
Published: 2016-03-03
Volume: 37
Issue: 3
Pages: 153-163
ISSN: 0161-2840 (ISSN-L)
1096-4673
DOI: 10.3109/01612840.2015.1116030
OpenAlex: W2319420461
Cited by: 404
References: 132
Citations by year: 2026: 45 · 2025: 58 · 2024: 65 · 2023: 50 · 2022: 53 · 2021: 56 · 2020: 35 · 2019: 25 · 2018: 10 · 2017: 4 · 2016: 2
FWCI: 2.03
Type: journal article
Language: en
Open access: closed
Locations: Issues in Mental Health Nursing (publishedVersion)
PubMed (publishedVersion)
Topics: Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
Social Sciences › Psychology › Clinical Psychology › Family Caregiving in Mental Illness
Keywords: autism spectrum disorder, parental stress, parents of autistic children, parental decision-making, autism services, health care access, early diagnosis, parental mental health, stress management
MeSH terms: Autism Spectrum Disorder, Adult, Child, Humans, Parents, Stress, Psychological

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Stress and Parents of Children with Autism: A Review of Literature

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