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Paynter J, Heng V, Tucker M, Malone S. A Longitudinal Analysis of Mothers' Parenting Stress and Internalizing and Externalizing Behavior of Young Children on the Autism Spectrum. J Autism Dev Disord 2025; 55:2294-2306. [PMID: 38720153 PMCID: PMC12167325 DOI: 10.1007/s10803-024-06362-x] [Citation(s) in RCA: 2] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 04/17/2024] [Indexed: 06/16/2025]
Abstract
We investigated longitudinal relations between internalizing, externalizing, and total behaviors that challenge in young children on the autism spectrum and mothers' parenting stress. Participants included 93 mothers of children on the autism spectrum aged 27.89-65.84 months, who completed questionnaires on maternal parenting stress, and children's internalizing (anxiety), externalizing (disruptive), and total behaviors that challenge. Data were collected on early intervention program intake and approximately one year later. Cross-sectional findings indicated small to medium effect size associations between internalizing and externalizing behavior and parenting stress. However, cross-lagged structural equation models found that neither internalizing nor externalizing behavior predicted later parenting stress, nor the reverse. Significant stability effects were found for measures of child internalizing (anxiety), externalizing (disruptive), and total behaviors, and parenting stress. Relations between behaviors that challenge and parenting stress over time were non-significant in our models that controlled for stability of behaviors and parenting stress over time. Implications for research and clinical practice, in understanding and targeting the persistence of behaviors that challenge and parenting stress, are discussed.
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Affiliation(s)
- Jessica Paynter
- Griffith Institute for Educational Research, Griffith University, 58 Parklands Drive, Gold Coast Campus, Southport, QLD, 4222, Australia.
- School of Applied Psychology, Griffith University, Gold Coast, Australia.
| | - Vanessa Heng
- School of Applied Psychology, Griffith University, Gold Coast, Australia
| | | | - Stephanie Malone
- Griffith Institute for Educational Research, Griffith University, 58 Parklands Drive, Gold Coast Campus, Southport, QLD, 4222, Australia
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Marafioti G, Bonanno L, Piccolo A, Giambò FM, Lo Buono V, Di Cara M, De Domenico C, Fulgenzi A, Leonardi S, Impallomeni C, Tripodi E, Quartarone A, Cucinotta F. The Impact of Co-Occurring Behavioral and Emotional Problems on the Quality of Life of Caregivers of Autistic Children: A Preliminary Study. J Clin Med 2025; 14:3319. [PMID: 40429315 PMCID: PMC12111956 DOI: 10.3390/jcm14103319] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/01/2025] [Revised: 04/30/2025] [Accepted: 05/06/2025] [Indexed: 05/29/2025] Open
Abstract
Background: Autism Spectrum Disorder (ASD) is a neurodevelopmental condition characterized by symptoms that vary in how severe they are. ASD individuals often present with psychiatric comorbidities that significantly impact their well-being and quality of life (QoL), with possible impacts on their family. Aims: This preliminary study aims to assess the impact of internalizing and externalizing behaviors, not closely related to the core symptoms of autism, on the QoL of their caregivers. Method: A pilot study was conducted with a sample of 58 children diagnosed with ASD and their caregivers, using the Quality of Life in Autism (QoLA) questionnaires for caregivers and the Child Behavior Checklist (CBCL) to evaluate the children's behavioral and emotional problems. Results and Conclusions: The results revealed significant differences in the mean age of the children (3.32 ± 0.88 vs. 8.47 ± 2.51 years) and caregivers (35.68 ± 7.57 vs. 40.42 ± 6.43 years), with a notable impact of specific behavioral issues, such as attention, aggression, and externalizing behaviors, on the QoL of caregivers. In younger children, caregivers' QoL was positively correlated with their age, with sleep problems being the primary source of stress. In older children, a negative correlation was found between caregivers' age and their QoL, with conduct and social problems in children having a negative effect on caregivers' well-being. These findings highlight the importance of targeted interventions to mitigate the impact of these factors on the QoL of caregivers of ASD children.
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Affiliation(s)
| | | | - Adriana Piccolo
- Istituti di Ricovero e Cura a Carattere Scientifico (IRCCS) Centro Neurolesi “Bonino Pulejo”, S.S 113 Via Palermo C. da Casazza, 98124 Messina, Italy; (G.M.); (L.B.); (F.M.G.); (V.L.B.); (M.D.C.); (C.D.D.); (A.F.); (S.L.); (C.I.); (E.T.); (A.Q.); (F.C.)
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John JR, Lam-Cassettari C, Dissanayake C, Eapen V. Sociodemographic and clinical indicators associated with quality of life among parents of autistic children. BMC Pediatr 2025; 25:326. [PMID: 40275148 PMCID: PMC12020269 DOI: 10.1186/s12887-025-05682-w] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/02/2024] [Accepted: 04/10/2025] [Indexed: 04/26/2025] Open
Abstract
BACKGROUND Evidence suggests that parents/carers of autistic children have lower subjective physical and mental health which in turn can affect their overall quality of life (QoL). The aim of this study was to determine the relationship between the behavioural and emotional profile of autistic preschool children, parental stress, and an Autism (ASD) specific measure of the parental QoL using a sociodemographic lens. METHODS A secondary analysis of the data collected from parents of autistic children from six Autism Specific Early Learning and Care Centres (ASELCCs) across six states in Australia. The standardised Quality of Life in Autism scale (QoLA) scale was used as the primary outcome to ascertain the QoL of parents/carers. Primary exposure included child's autistic traits as well as cognitive, adaptive, and behavioural profile; parental stress; and key sociodemographic factors. Multivariable linear regression analyses were used to determine whether the sociodemographic factors and child's autistic traits were significantly associated with parental QoL whilst adjusting for key sociodemographic factors (for the latter). RESULTS Among a sample of 518 participants, findings of the regression analyses showed that sibling's ASD diagnosis and carer's disability status were negatively associated with parental QoL (Part A) whereas only sibling's ASD diagnosis was negatively associated with parental QoL (Part B). Additionally, higher parental stress levels, child's internalising, externalising, repetitive behaviours, and communication difficulties were negatively associated with both parental QoL subscales whereas greater adaptive functioning among autistic children was positively linked to better parental QoL. CONCLUSION Findings indicate that a child's autism specific traits as reported by parents have significant impacts on their QoL. Hence, targeted supports in these areas for families could be expected to have benefits not only for the child's outcomes but also for parental QoL.
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Affiliation(s)
- James Rufus John
- School of Clinical Medicine, University of New South Wales, Sydney, NSW, Australia
- Ingham Institute of Applied Medical Research, Liverpool, NSW, Australia
- Academic Unit of Infant, Child, and Adolescent Psychiatry Services, South Western Sydney Local Health District, Liverpool, NSW, Australia
| | - Christa Lam-Cassettari
- School of Clinical Medicine, University of New South Wales, Sydney, NSW, Australia
- Ingham Institute of Applied Medical Research, Liverpool, NSW, Australia
- Academic Unit of Infant, Child, and Adolescent Psychiatry Services, South Western Sydney Local Health District, Liverpool, NSW, Australia
| | - Cheryl Dissanayake
- Olga Tennison Autism Research Centre, La Trobe University, Victoria, Australia
| | - Valsamma Eapen
- School of Clinical Medicine, University of New South Wales, Sydney, NSW, Australia.
- Ingham Institute of Applied Medical Research, Liverpool, NSW, Australia.
- Academic Unit of Infant, Child, and Adolescent Psychiatry Services, South Western Sydney Local Health District, Liverpool, NSW, Australia.
- Cooperative Research Centre for Living with Autism (Autism CRC), Long Pocket, Brisbane, QLD, Australia.
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Seymour M, Pecora L, McMahon G, Wood CE, Feinberg M, Hock R, Giallo R. Trajectories of psychological distress for Australian fathers parenting a child on the autism spectrum: Evidence from early childhood to adolescence. AUTISM : THE INTERNATIONAL JOURNAL OF RESEARCH AND PRACTICE 2025; 29:182-194. [PMID: 39235165 PMCID: PMC11656631 DOI: 10.1177/13623613241272005] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 09/06/2024]
Abstract
LAY ABSTRACT This study explores the mental health journey of fathers with children on the autism spectrum. Little is known about mental health over time for these fathers. This research spans six-timepoints from when children were aged 4 to 14 years, to track fathers' mental health. This study had three aims: (1) report estimates of fathers' psychological distress across 10 years of child development; (2) identify separate courses of psychological distress over time; and (3) identify early risk factors associated with these courses. This study used data from 281 fathers of children on the autism spectrum who took part in the Longitudinal Study of Australian Children. Using a statistical method to group fathers based on their psychological distress scores over 10 years of child development, the results showed that two groups best explained the data; this included a group of fathers who experienced low levels of psychological distress over the 10 years of child development (84%), and another group of fathers who experienced heightened psychological distress across this time (16%). Further analysis showed that fathers who had an ongoing medical condition and higher levels of interparental conflict with their partners were more likely to be in the heightened psychological distress group. These findings show that almost one in six fathers deal with persistent psychological distress throughout their child's early childhood and into early adolescence. This study advocates for interventions focusing on improving fathers' physical health and the couple relationship as ways to positively impact fathers' mental health in the long run.
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Affiliation(s)
- Monique Seymour
- Deakin University, Australia
- Murdoch Children’s Research Institute, Australia
| | | | - Grace McMahon
- Murdoch Children’s Research Institute, Australia
- The Royal Children’s Hospital, Australia
| | | | | | - Rob Hock
- University of South Carolina, USA
| | - Rebecca Giallo
- Deakin University, Australia
- Murdoch Children’s Research Institute, Australia
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Zhang H, Chen S, Yu J, Niu X, Wang X, Wang L. Association between adherence to behavioral intervention and capability well-being among parents of autistic children: a cross-sectional study from China. BMC Psychiatry 2024; 24:922. [PMID: 39696063 DOI: 10.1186/s12888-024-06394-8] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 02/18/2024] [Accepted: 12/09/2024] [Indexed: 12/20/2024] Open
Abstract
BACKGROUND High adherence to behavioral interventions among parents of autistic children contribute to improvement in children's behaviors and parental outcomes. However, most of previous studies focused on the effects of intervention adherence on health-related well-being among parents, which is inadequate to capture the multi-dimensional parental burden of caring for autistic children. The aim of this study is to assess the association between parents' adherence to behavioral intervention and their capability well-being. METHODS A cross-sectional study was conducted among caregivers of autistic children aged 1-17 years with a confirmed diagnosis in China. A total of 213 parents of autistic children who were currently receiving behavioral intervention were considered in this study. Parental adherence to behavioral intervention was evaluated by the 5-item General Adherence subscale of the Medical Outcome Study. Capability well-being was assessed using the Investigating Choice Experiments Capability Measures for Adults (ICECAP-A), including the domains of stability, attachment, autonomy, achievement, and enjoyment. The index scores for each domain were computed based on the preference-based value set in the United Kingdom, ranging from 0 to 1. Multivariate linear regression analyses were conducted to assess the relationship between intervention adherence and parental well-being. Intervention adherence as well as the variables with p < 0.1 in the univariate analyses were included in multivariate linear regression analyses. RESULTS The mean overall score of ICECAP-A was 0.681 (0.205). In the univariate analyses, intervention adherence was positively associated with stability, autonomy, achievement, and enjoyment (p < 0.05), while the relationship between intervention adherence and attachment was not significant (p = 0.07). After controlling for the confounders in the multivariate linear regression analyses, intervention adherence was positively associated with achievement (β = 0.0004) and enjoyment (β = 0.0004). CONCLUSIONS The overall capability well-being among parents of autistic children was worse than that of the general population and caregivers of adult patients with chronic diseases. Adherence to behavioral interventions was positively associated with parental well-being in terms of achievement and enjoyment. Health professionals should involve parents in behavioral interventions and encourage them to implement therapeutic strategies on a routine basis. Customized interventions are warranted to improve capability well-being targeting at vulnerable groups.
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Affiliation(s)
- Huanyu Zhang
- Clinical Big Data Research Center, The Seventh Affiliated Hospital, Sun Yat-sen University, Shenzhen, 518107, China
| | - Shanquan Chen
- International Centre for Evidence in Disability, London School of Hygiene & Tropical Medicine, London, WC1E 7HT, UK
| | - Jiazhou Yu
- Jockey Club School of Public Health and Primary Care, The Chinese University of Hong Kong, Shatin, Hong Kong SAR, China
| | - Xuejing Niu
- International Office, Guilin University of Aerospace Technology, Guilin, 541004, China
| | - Xue Wang
- Education Practice and Leadership, University of North Dakota, Grand Forks, ND, 58202, USA
| | - Li Wang
- Shenzhen Research Institute, The Chinese University of Hong Kong, Shenzhen, 518000, China.
- Brain and Mind Institute, The Chinese University of Hong Kong, Shatin, N.T., Hong Kong SAR, China.
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Demirpençe Seçinti D, Diş D, Albayrak ZS, Şen E. Depression and parental distress among caregivers of autistic children: a serial mediator analysis in caregivers of autistic children. BMC Psychol 2024; 12:339. [PMID: 38858797 PMCID: PMC11165892 DOI: 10.1186/s40359-024-01704-x] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/03/2023] [Accepted: 04/03/2024] [Indexed: 06/12/2024] Open
Abstract
BACKGROUND This study aimed to investigate the relationship between the severity of autism, emotional and behavioral problems of autistic children, internalized stigma, depressive symptoms, and primary caregiver parental stress. Specifically, we explored the mediating role of internal stigmatization and total difficulties of individuals with autism on parenting stress and depressive symptoms of the primary caregiver. METHOD Mothers of 93 children with autism were included in the study. The mothers were given the Beck Depression Inventory (BDI), The Internalized Stigma of Mental Illness Scale (ISMI), the Autism Behavior Checklist, the Parenting Stress Index-Short Form, Strength, and Difficulties Questionnaire -Parent Form (SDQ-P). RESULTS As a result of our study, the emotional and behavioral problems of the child and the internalized stigmatization felt by the parent played a mediator role in the relationship between the child's autism severity and the parent's stress and depressive symptoms. CONCLUSIONS Our findings highlight that internalized stigmatization and behavioral characteristics of individuals with autism are among the most critical problems for their primary caregivers. These results have important implications for the development of interventions aimed at reducing the internalized stigma experienced by primary caregivers of individuals with autism and for improving their mental health outcomes.
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Affiliation(s)
| | - Dilan Diş
- Department of Clinical Psychology, Istanbul Rumeli University, Istanbul, Turkey
| | - Zeynep Seda Albayrak
- Department of Child and Adolescent Psychiatry, Koc University Hospital, Istanbul, Turkey
| | - Ezgi Şen
- Department of Clinical Psychology, Istanbul Rumeli University, Istanbul, Turkey
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Yang L, Ye J, Zhu H, Tang Y, Li X. Development and evaluation of a family-child reading picture book on reducing autism spectrum disorder caregivers' psychological stress: a mixed method study. Front Psychiatry 2024; 15:1390430. [PMID: 38863613 PMCID: PMC11165404 DOI: 10.3389/fpsyt.2024.1390430] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 02/26/2024] [Accepted: 04/22/2024] [Indexed: 06/13/2024] Open
Abstract
Introduction The rapid increasing prevalence of ASD has become a significant global health issue. Caregivers of children with ASD are experiencing higher level of psychological stress and mental disorders. However, interventions to improve the psychological health of caregivers of children with ASD have largely been neglected. Methods Based on the ADDIE (Analysis, Design, Development, Implementation, and Evaluation) model, we initially did in-depth interviews with 8 caregivers, and conducted field observation in two rehabilitation centers to analyze the daily lives, the empowered components, the emotional moments of the children with autism and their caregivers. Then we designed the outline of the picture book, and developed it by a multi-disciplinary team by 4 rounds. After that, this picture book was sent out to 54 caregivers of children with ASD for family-child reading in one month. A quantitative questionnaire was administered before and after their reading to evaluate the efficacy of reducing their stress and affiliate stigma, and improving self-efficacy, resilience, empowerment capacity; and exit interviews were conducted after their initial reading to assess the acceptability, content appropriateness, perceived benefits and generalizability of this picture book. Quantitative data were analyzed by descriptive analysis and paired t-tests using IBM SPSS 26.0. Qualitative data were analyzed using template analysis. Results In total, 54 caregivers read the picture book with their child, with the total of 149 (an average of 2.76 per family) times reading in one month. Among them, 39 caregivers returned the following-up questionnaires. Although most of the outcome measures did not showed significant changes except the stress level decreased statistically significant (13.38 ± 3.864 to 11.79 ± 3.238, P=0.001), caregivers reported that the picture book echoed their daily lives and gave them a sense of warmth, inspiration, and hope, as well as some insight on family relationships and attitudes towards the disorder. They also expressed a willingness to disseminate the book to other families with children suffering ASD and the public. Conclusion This specially designed picture book has been proven to be an acceptable, content-appropriate, and effective family-centered psychological intervention, which could be easily scaled up.
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Affiliation(s)
- Lei Yang
- Xiangya School of Nursing, Central South University, Changsha, Hunan, China
| | - Jinlin Ye
- Xiangya School of Nursing, Central South University, Changsha, Hunan, China
| | - Hongrui Zhu
- School of International Nursing, Hainan Medical University, Haikou, Hainan, China
| | - Yao Tang
- Xiangya School of Nursing, Central South University, Changsha, Hunan, China
| | - Xianhong Li
- Xiangya School of Nursing, Central South University, Changsha, Hunan, China
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Regian N, Mittal A, Chammany M, Rai HP, Rommen M. Navigating Community-Based Psychiatry Care of Pediatric Patients in Low-Resource Settings: A Case Report. Cureus 2024; 16:e59506. [PMID: 38826973 PMCID: PMC11144047 DOI: 10.7759/cureus.59506] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/31/2024] [Accepted: 05/01/2024] [Indexed: 06/04/2024] Open
Abstract
This case report examines the experience of a nine-year-old male with autism spectrum disorder (ASD) who was admitted to his rural community emergency department (ED) for the treatment of aggressive behaviors, agitation, and violence. Despite a high prevalence of such behaviors within the autistic pediatric population, multiple inpatient facilities that offer pediatric psychiatric services refused to transfer his care. Many other commonly used resources and treatment modalities were also not available, resulting in a nine-day ED boarding experience with minimal symptomatic improvement. Pharmacotherapy was utilized, but nationally recommended guidelines were not appropriately followed. Although this case is one of many pediatric patients who received inadequate psychiatric care from their local ED, it is significant in identifying specific areas of improvement within Northeast Louisiana psychiatric healthcare. This case report of a nine-year-old male with autism underlines the hardships faced by patients and their families due to the gaps in our current healthcare infrastructure and emphasizes the importance of protocols and resources for patient populations with higher-than-average wellness needs.
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Affiliation(s)
- Natalie Regian
- Medical School, Edward Via College of Osteopathic Medicine, Monroe, USA
| | - Ajay Mittal
- Medical School, Edward Via College of Osteopathic Medicine, Monroe, USA
- Nephrology, University of Florida College of Medicine, Gainesville, USA
| | - Michael Chammany
- Medical School, Edward Via College of Osteopathic Medicine, Monroe, USA
| | - Hitesh P Rai
- Research, Edward Via College of Osteopathic Medicine, Monroe, USA
| | - Michael Rommen
- Clinical Medicine/Emergency Medicine, Edward Via College of Osteopathic Medicine, Monroe, USA
- Emergency Medicine, St. Francis Medical Center, Monroe, USA
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Jackson SZ, Pinto-Martin JA, Deatrick JA, Boyd R, Souders MC. High Depressive Symptoms, Low Family Functioning, and Low Self-Efficacy in Mothers of Children With Autism Spectrum Disorder Compared to Two Control Groups. J Am Psychiatr Nurses Assoc 2024; 30:300-312. [PMID: 35708452 DOI: 10.1177/10783903221104147] [Citation(s) in RCA: 10] [Impact Index Per Article: 10.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/17/2022]
Abstract
BACKGROUND Parents of children with autism spectrum disorder (ASD) face unique challenges in raising their children, and they are at higher risk for depression compared to parents of children with typical development (TD) and other disabilities. AIMS (1) To compare prevalence of depressive symptoms among mothers of children with ASD (n = 101), Down syndrome (DS, n = 101), and TD (n = 43) and (2) to describe the relationships among depression, self-efficacy, and family functioning, and describe the mediating role of maternal child care self-efficacy between depressive symptoms and child behavior. METHODS In this cross-sectional study, mothers completed the Social Communication Questionnaire, Aberrant Behavior Checklist, Patient Health Questionnaire-9 (PHQ-9), Family Assessment Device General Functioning Scale, and Maternal Self-Efficacy Scale. RESULTS Mothers of children with ASD had significantly higher mean PHQ-9 scores (p < .001), higher proportion of positive depression screening (p < .001), and lower family functioning (p < .001). Better family functioning is associated with less depression, better self-efficacy, and less severe ASD symptoms and behaviors. Self-efficacy mediated the relationship between depression and child ASD symptoms, and problematic behavior. CONCLUSIONS The rates of reported history of depression and low family functioning in mothers of children with ASD are twice the rate in mothers of children with DS and TD. Maternal child care self-efficacy is protective against maternal depression, even in the presence of severe child problematic behaviors and ASD symptoms. Interventions that increase child care self-efficacy and family functioning may be helpful in addressing depression in mothers of children with ASD.
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Affiliation(s)
- Stefanie Zavodny Jackson
- Stefanie Zavodny Jackson, PhD, RN, University of Pennsylvania School of Nursing, Philadelphia, PA, USA
| | - Jennifer A Pinto-Martin
- Jennifer A. Pinto-Martin, PhD MPH, University of Pennsylvania School of Nursing, Philadelphia, PA, USA
- Jennifer A. Pinto-Martin, PhD MPH, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA, USA
| | - Janet A Deatrick
- Janet A. Deatrick, PhD RN FAAN, University of Pennsylvania School of Nursing, Philadelphia, PA, USA
- Janet A. Deatrick, PhD RN FAAN, The Children's Hospital of Philadelphia, Philadelphia, PA, USA
| | - Rhonda Boyd
- Rhonda Boyd, PhD, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA, USA
- Rhonda Boyd, PhD, Department of Child and Adolescent Psychiatry, The Children's Hospital of Philadelphia, Philadelphia, PA, USA
| | - Margaret C Souders
- Margaret C. Souders, PhD CRNP, University of Pennsylvania School of Nursing, Philadelphia, PA, USA
- Margaret C. Souders, PhD CRNP, Department of Child and Adolescent Psychiatry, The Children's Hospital of Philadelphia, Philadelphia, PA, USA
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Moshe S, Oppenheim D, Slonim M, Hamburger L, Maccabi Y, Yirmiya N. Positive and challenging themes in parents' perceptions of their relationships with their child with autism: Comparison between mothers and fathers. AUTISM : THE INTERNATIONAL JOURNAL OF RESEARCH AND PRACTICE 2024; 28:744-754. [PMID: 37448108 PMCID: PMC10913294 DOI: 10.1177/13623613231182513] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 07/15/2023]
Abstract
LAY ABSTRACT Most studies of how parents of children with autism see the parent-child relationship used questionnaires completed by the parents and focused on challenges. This study broadened the lens by interviewing parents using open-ended questions that provide an opportunity to raise challenging but also positive experiences. Seventy-five mother-father dyads were interviewed individually about their own and their spouses' relationships with their preschooler, and we found nine relationship themes. In descending order, the themes mentioned most frequently by mothers were "Security and Closeness," "Love," and "Tenderness and Sensitivity," and by fathers were "Pleasure in Joint Activities," "Security and Closeness," and "Guidance." Positive themes were more common than challenging themes. Finally, more mothers mentioned the themes "Love," "Tenderness and Sensitivity," "High Involvement and Care," and "Difficulties" than did fathers, whereas more fathers mentioned the themes "Guidance" and "Pleasure in Joint Activities" than did mothers. The findings portray a nuanced view of the parenting experience of mothers and fathers of preschoolers with autism.
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Eapen V, Islam R, Azim SI, Masi A, Klein L, Karlov L. Factors Impacting Parental Quality of Life in Preschool Children on the Autism Spectrum. J Autism Dev Disord 2024; 54:943-954. [PMID: 36538128 DOI: 10.1007/s10803-022-05848-w] [Citation(s) in RCA: 1] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 11/21/2022] [Indexed: 12/24/2022]
Abstract
This study examined connections between parental quality of life (QoL) and features of children (autism severity, cognitive ability, behavioral profile, and sociodemographic factors). Parents of 97 children attending an autism-specific preschool completed the Quality of Life in Autism, Vineland Adaptive Behavior Scales and Child Behavior Checklist. The Autism Diagnostic Observation Schedule and Mullen Scales of Early Learning were also administered. Reduced restrictive/repetitive behavior and higher socialization and play/leisure scores were associated with better parental QoL. Better behavioral regulation and attention also predicted better QoL, as did stronger communication and reduced internalising behaviours. Findings indicate that a child's level of autism specific traits, adaptive functioning and behavioral profile has greater impact on parental QoL than cognitive level.
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Affiliation(s)
- Valsamma Eapen
- School of Psychiatry, Faculty of Medicine, UNSW Sydney, Sydney, NSW, Australia.
- South Western Sydney Local Health District Academic, Unit of Child Psychiatry, Level 1, Mental Health Centre, Liverpool Hospital, Liverpool, NSW, Australia.
- Ingham Institute for Applied Medical Research, Liverpool, NSW, Australia.
| | - Raisa Islam
- School of Psychiatry, Faculty of Medicine, UNSW Sydney, Sydney, NSW, Australia
| | - Syeda Ishra Azim
- School of Psychiatry, Faculty of Medicine, UNSW Sydney, Sydney, NSW, Australia
| | - Anne Masi
- School of Psychiatry, Faculty of Medicine, UNSW Sydney, Sydney, NSW, Australia
| | - Louis Klein
- School of Psychiatry, Faculty of Medicine, UNSW Sydney, Sydney, NSW, Australia
- South Western Sydney Local Health District Academic, Unit of Child Psychiatry, Level 1, Mental Health Centre, Liverpool Hospital, Liverpool, NSW, Australia
| | - Lisa Karlov
- School of Psychiatry, Faculty of Medicine, UNSW Sydney, Sydney, NSW, Australia
- South Western Sydney Local Health District Academic, Unit of Child Psychiatry, Level 1, Mental Health Centre, Liverpool Hospital, Liverpool, NSW, Australia
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Huang Y, Huang Y, Lin M, Tao Y. Seeking central hopelessness symptoms which direct link to resilience among parents of children with autism spectrum disorder in China-A network perspective. Psych J 2024; 13:102-112. [PMID: 37942982 PMCID: PMC10917102 DOI: 10.1002/pchj.707] [Citation(s) in RCA: 1] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/22/2023] [Accepted: 10/09/2023] [Indexed: 11/10/2023]
Abstract
The intervention process for children with autism spectrum disorder (ASD) is inextricably associated with their parents' mental health problems, such as hopelessness, which may adversely affect resilience and indirectly impact the effectiveness of interventions for their children. Hence, the motivation to help parents of children with ASD reduce hopelessness prompted us to conduct the present study and explore the interrelationship between hopelessness symptoms and resilience. This study evaluated hopelessness and resilience using the Beck Hopelessness Scale (BHS) and the Connor-Davidson Resilience Scale (CD-RISC). Participants met the criteria for their children's ASD diagnosis by a psychiatrist (N = 448; 54.69% mothers; Meanage = 34.59 years, SDage = 4.94 years). Moreover, we used symptom network analysis to examine the variability in network structure between fathers and mothers. The flow function was applied to examine which hopelessness symptoms were directly or indirectly associated with resilience. The results showed that #BHS11 (i.e., unpleasantness-ahead) was the central symptom found in the network structure for all parents and fathers, while #BHS17 (i.e., no-future-satisfaction) was the central symptom in the network structure for mothers. Additionally, #BHS6 ([NOT] expect-to-succeed) was directly and positively associated with resilience in all three network structures (i.e., all parents, fathers, and mothers). The results of the present study provide evidence that influential symptoms should be addressed and offer guidance for further interventions to reduce hopelessness and enhance resilience among parents of children with ASD.
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Affiliation(s)
- Yulin Huang
- Shenzhen Jiayun Psychological InstituteShenzhenChina
- Department of NeuroscienceCity University of Hong KongHong KongChina
| | - Yalin Huang
- Shenzhen Jiayun Psychological InstituteShenzhenChina
- Division of Nutritional Sciences, School of BiosciencesThe University of NottinghamLeicestershireUK
| | - Miaoxuan Lin
- Shenzhen Jiayun Psychological InstituteShenzhenChina
- School of Psychological and Cognitive SciencesPeking UniversityBeijingChina
| | - Yanqiang Tao
- Faculty of PsychologyBeijing Normal UniversityBeijingChina
- Beijing Key Laboratory of Applied Experimental PsychologyNational Demonstration Center for Experimental Psychology EducationBeijingChina
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13
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Brinkman AH, Barry TD, Lindsey RA. The Relation of Parental Expressed Emotion, Parental Affiliate Stigma, and Typically-developing Sibling Internalizing Behavior in Families with a Child with ASD. J Autism Dev Disord 2023; 53:4591-4603. [PMID: 36180666 DOI: 10.1007/s10803-022-05760-3] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 09/13/2022] [Indexed: 10/14/2022]
Abstract
Caregivers of children with autism spectrum disorder (ASD) experience greater stress, expressed emotion (EE), and affiliate stigma than caregivers of children without ASD. Siblings of children with ASD often experience greater negative functioning than siblings of individuals without ASD. The current study found significant interrelations among symptom severity and externalizing behavior in children with ASD; parental stress, affiliate stigma, and EE; and TD sibling internalizing behavior. In addition, certain subcomponents of affiliate stigma predicted unique variance in EE and TD sibling internalizing behavior. Findings may increase understanding of psychosocial functioning in families with children with ASD and allow clinicians to improve outcomes for all family members. Limitations of the study included self-report data, limited sample diversity, and a cross-sectional design.
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Affiliation(s)
- Aurora H Brinkman
- Department of Psychology, Washington State University, Johnson Tower 233, PO Box 644820, 99164-4820, Pullman, WA, USA
| | - Tammy D Barry
- Department of Psychology, Washington State University, Johnson Tower 233, PO Box 644820, 99164-4820, Pullman, WA, USA.
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14
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ten Hoopen LW, de Nijs PFA, Slappendel G, van der Ende J, Bastiaansen D, Greaves-Lord K, Hakkaart-van Roijen L, Hillegers MHJ. Associations between autism traits and family functioning over time in autistic and non-autistic children. AUTISM : THE INTERNATIONAL JOURNAL OF RESEARCH AND PRACTICE 2023; 27:2035-2047. [PMID: 36752154 PMCID: PMC10504804 DOI: 10.1177/13623613231151784] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 02/09/2023]
Abstract
LAY ABSTRACT Little is known about family functioning over time when raising a child with autism traits, with or without a clinical autism diagnosis. Therefore, we asked caregivers-mostly parents-of a group of 168 children about the family functioning and the child's emotional and behavioral characteristics, as well as autistic traits, twice with about 1 year in between. For numerous reasons, the children were referred to youth mental health care centers, including child and adolescent psychiatric services. Care as usual was offered after the diagnostic assessment if a clinical diagnosis was the assessment outcome. Caregivers reported less problematic family functioning in children with fewer autism traits over time. The child's additional emotional or behavioral characteristics did not seem to influence this relation. Furthermore, we split the whole group into autistic children with a clinical autism diagnosis (58%) and non-autistic children with autism traits but without a clinical diagnosis (42%) to see whether we would find the same results in both groups. Surprisingly, the relation between family functioning and the level of a child's autism traits only held for the subgroup of non-autistic children with autism traits. Thus, raising children with autism traits without a clinical diagnosis may affect family functioning over time. We think that families might have difficulty understanding and adjusting to the autism traits of their children but are lacking the support that is exclusively offered to families of children with a clinical autism diagnosis. We must be cautious because we do not know whether there is a causal relation. Although further research is needed to explore and learn to understand this result, clinicians might consider offering support to families of children with subthreshold autism to prevent problems in family functioning. Because high autism trait levels in non-autistic children may be of a different origin than autism, for example, other neurodevelopmental or mental health problems, family training or support should be tailored to the child's underlying difficulties.
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Affiliation(s)
- Leontine W ten Hoopen
- Erasmus MC Sophia Children’s Hospital, The Netherlands
- Erasmus School of Health Policy & Management, The Netherlands
| | | | - Geerte Slappendel
- Erasmus MC Sophia Children’s Hospital, The Netherlands
- Yulius Mental Health, The Netherlands
| | | | | | - Kirstin Greaves-Lord
- Erasmus MC Sophia Children’s Hospital, The Netherlands
- Yulius Mental Health, The Netherlands
- Lentis Mental Health, The Netherlands
| | | | - Manon HJ Hillegers
- Erasmus MC Sophia Children’s Hospital, The Netherlands
- Yulius Mental Health, The Netherlands
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15
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Kishimoto T, Liu S, Zhang L, Li S. How do autistic severity and family functioning influence parental stress in caregivers of children with autism spectrum disorder in China? The important role of parental self-efficacy. Front Psychol 2023; 14:956637. [PMID: 37303922 PMCID: PMC10248241 DOI: 10.3389/fpsyg.2023.956637] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/06/2022] [Accepted: 05/02/2023] [Indexed: 06/13/2023] Open
Abstract
Introduction Parental stress among primary caregivers of children with autism spectrum disorder (ASD) is a significant concern. While previous research indicates that both family and child factors substantially influence parental stress, a few studies have comprehensively examined these factors from family, parent, and child perspectives. Moreover, the psychological mechanisms underlying parental stress remain underexplored. Method This study obtained a valid sample of 478 primary caregivers of children diagnosed with ASD in China and employed mediation and moderated mediation analyses to investigate the relationships between family adaptability and cohesion (FAC), ASD severity, parental self-efficacy, and parental stress. Result Results revealed that higher FAC was linked to reduced parental stress through increased parental self-efficacy. The indirect effect of parental self-efficacy was more substantial for caregivers of children with severe symptoms than those with mild symptoms. Discussion These findings offer insights into how FAC influences parental stress and underscore the importance of parental self-efficacy as a coping resource for mitigating parental stress. This study provides valuable theoretical and practical implications for understanding and addressing parental stress, particularly in families raising children with ASD.
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Affiliation(s)
- Tomoko Kishimoto
- Department of Social Psychology, Zhou Enlai School of Government, Nankai University, Tianjin, China
| | - Shuang Liu
- CAS Key Laboratory of Behavioral Science, Institute of Psychology, Chinese Academy of Sciences, Beijing, China
| | - Lumei Zhang
- Department of Social Psychology, Zhou Enlai School of Government, Nankai University, Tianjin, China
| | - Shaowei Li
- Huli District Maternal and Child Health Hospital, Child Healthcare Department, Xiamen, China
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16
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Rasoulpoor S, Salari N, Shiani A, Khaledi-Paveh B, Mohammadi M. Determining the relationship between over-care burden and coping styles, and resilience in mothers of children with autism spectrum disorder. Ital J Pediatr 2023; 49:53. [PMID: 37158976 PMCID: PMC10169368 DOI: 10.1186/s13052-023-01465-0] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/31/2022] [Accepted: 05/01/2023] [Indexed: 05/10/2023] Open
Abstract
BACKGROUND Stress and over-care burden are problems for mothers of children with Autism Spectrum Disorder (ASD). Therefore, it seems necessary to evaluation of coping with stress according to the burden of care for these mothers. This study aimed to determine the relationship between care burden with coping styles and resilience of mothers of children with ASD. METHODS The present study is a descriptive-analytical study performed on mothers of children with ASD in Kermanshah, Iran. Participants in the study were selected by convenience sampling. A Demographic questionnaire, Caregiver Burden Inventory (CBI), Connor-Davidson Resilience Scale (CD-RISC), and Coping strategies questionnaire (CSQ) were used for collecting data. Then it was analyzed through an independent t-test, ANOVA, and Pearson correlation test. RESULTS The mean total score of the burden of care was 95.5 ± 9.1, resilience was 52.7 ± 8.7, and coping styles were 92.4 ± 8.4. Mothers of children with autism experience a severe burden of care and moderate levels of resiliency. There was also a significant negative correlation between the burden of care and resilience) p < 0.001, r = -0.536), but no significant correlation was found between burden of care and coping style) p = 0.937, r = -0.010). CONCLUSION According to the results of this study, it is necessary to pay more attention to the factors affecting resiliency. Also, considering the significant relationship between burden of care and resiliency, teaching strategies to increase resiliency can be used in the educational program for mothers with autistic children.
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Affiliation(s)
- Shabnam Rasoulpoor
- Department of Psychiatric Nursing, School of Nursing and Midwifery, Urmia University of Medical Sciences, Urmia, Iran
| | - Nader Salari
- Department of Biostatistics, School of Health, Kermanshah University of Medical Sciences, Kermanshah, Iran
| | - Amir Shiani
- Department of Radiology and Nuclear Medicine, School of Allied Medical Sciences, Kermanshah University of Medical Sciences, Kermanshah, Iran
| | - Behnam Khaledi-Paveh
- Sleep Disorders Research Center, Kermanshah University of Medical Sciences, Kermanshah, Iran
| | - Masoud Mohammadi
- Cellular and Molecular Research Center, Gerash University of Medical Sciences, Gerash, Iran.
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17
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Adaptation of Parents Raising a Child with ASD: The Role of Positive Perceptions, Coping, Self-efficacy, and Social Support. J Autism Dev Disord 2023; 53:1224-1242. [PMID: 35507296 DOI: 10.1007/s10803-022-05537-8] [Citation(s) in RCA: 17] [Impact Index Per Article: 8.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 03/16/2022] [Indexed: 10/18/2022]
Abstract
This study explored the adaptation of parents raising a child with an Autism Spectrum Disorder (ASD) specifically the contributory role of positive perceptions, coping, self-efficacy, and social support. One hundred and thirty-six parents of children with a diagnosis of ASD completed a battery of self-report questionnaires via an online survey. Using multiple regression analyses positive perceptions, adaptive coping, self-efficacy, and social support were each a significant contributor to one or more positive adaptation outcomes. Multiple moderated regression analysis found no evidence that these factors were significant moderators between behavioural problems and parental adaptation. The implications of these findings in supporting parents raising a child with ASD are outlined.
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18
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Greer BD. Barriers to Accessing Effective Treatments for Destructive Behavior. POLICY INSIGHTS FROM THE BEHAVIORAL AND BRAIN SCIENCES 2023; 10:68-74. [PMID: 38840711 PMCID: PMC11150915 DOI: 10.1177/23727322221144653] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 06/07/2024]
Abstract
The field of applied behavior analysis has developed and refined a comprehensive methodology for the assessment and successful treatment of destructive behavior: An individualized approach emphasizes (a) function of responding (or its cause) over its form; (b) objective and reliable measurement of behavior; (c) systematic procedures and their application; (d) rigorous, single-case experimental designs; and (e) determinations of successful intervention judged by improvements in the same individual's performance. Outcomes of this approach are often dramatic and reliably surpass those obtained by alternative means. However, significant barriers limit the accessibility of this proven therapy. Too few intensive behavioral intervention units, diagnosis- and age-dependent insurance authorization and reimbursement practices, long waitlists and slow approval processes, and the possibility of treatment relapse represent a few such barriers. This article describes these barriers and suggests some potential solutions.
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Affiliation(s)
- Brian D. Greer
- Rutgers Brain Health Institute
- Children’s Specialized Hospital–Rutgers
University Center for Autism Research, Education, and Services
(CSH–RUCARES)
- Department of Pediatrics, Rutgers Robert Wood Johnson
Medical School
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19
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Trends in Autism Spectrum-Related Motherhood Research: A Bibliometric Study. Eur J Investig Health Psychol Educ 2023; 13:472-489. [PMID: 36826220 PMCID: PMC9955095 DOI: 10.3390/ejihpe13020036] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/30/2022] [Revised: 02/06/2023] [Accepted: 02/11/2023] [Indexed: 02/18/2023] Open
Abstract
Autism spectrum disorder (ASD) is a neurodevelopmental condition characterized by difficulties in socialization. The amount of scientific research results on motherhood related to ASD has grown exponentially; however, there are no bibliometric studies in this field. Objective: This article aimed to analyze scientific research on motherhood related to the autism spectrum published in WoS. Articles on motherhood related to ASD were retrieved from the Web of Science (WoS). The advanced search interface used was "Title of the article, Abstract, Keywords". The analysis and visualization of the selected documents and their data were performed using a wide range of tools and software such as MS Excel (v16.0), VOS viewer (version 1.6.15), and R packages (Biblioshiny, version 2.0). A total of 1660 articles were included in this study. Most of the publications were original articles. The United States published the most significant number of articles among the countries identified. P.R. Hastings, M.M. Seltzer, and J. Van de Water were the main authors. The Journal of Autism and Developmental Disorders was the most productive and impactful journal. The main research topics were related to mental health and social support in the role of motherhood. This desk study provides researchers with a comprehensive understanding of ASD-related maternity research trends by evaluating relevant publications in recent decades. The results of this bibliometric analysis can serve as a basis and orientation for new studies.
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20
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Lohiya N, Srivastava L, Lohiya N, Kalrao V. Stress among mothers of children with Autism Spectrum Disorder in comparison to children with & without special health care needs. J Pediatr Rehabil Med 2023; 16:473-481. [PMID: 36776080 DOI: 10.3233/prm-220014] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 02/10/2023] Open
Abstract
PURPOSE Parenting a child with special health care needs (SHCN) is often stressful. This study aimed to measure and compare stress among mothers of children with (a) Autism Spectrum Disorder (ASD) - ASD group, (b) Developmental delay without ASD group, (c) SHCN without developmental delay group, and (d) Typically developing group. To assess factors associated with maternal stress in children with developmental disorders. METHODS A cross-sectional analytical study was performed with children aged 2-12 years and their mothers. The study population was classified into four groups as defined above help of detailed history, developmental & behavioral assessments, psychological assessments, and Child Special Health Care Needs Screener (CSHCN). Parental Stress Scale (PSS) Questionnaire was administered. The main outcome measurement was the PSS and various factors affecting it. RESULTS The mothers of the ASD group reported a high stress score (50.4±11.4) compared to SHCN without developmental delay group (38.2±8.8) and the Typically developing group (22.3±3.3) (p < 0.05) and higher but not significant stress than Developmental delay without ASD group (45.3±9.6, p > 0.05). Maladaptive behavioral issues and irregular interventions were the factors contributing to higher parental stress in the ASD group (p < 0.05). A moderate positive correlation was observed in rewarding and challenging scores of PSS among mothers of the ASD group, Developmental delay without ASD group, and SHCN without developmental delay group. CONCLUSION Mothers of the ASD group perceived higher stress as compared to SHCN without developmental delay group and Typically developing group. Evaluation of stress and stressors is crucial for holistic management of ASD.
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Affiliation(s)
- Nirali Lohiya
- Division of Developmental & Behavioral Pediatrics, Silver Lining Pediatric Super Speciality Center, Nagpur, India
| | - Leena Srivastava
- Department of Pediatrics, Bharati Vidyapeeth Deemed University, Pune, India
| | - Nikhil Lohiya
- Division of Growth & Endocrinology Silver Lining Pediatric Super Speciality Center, Nagpur, India
| | - Vijay Kalrao
- Department of Pediatrics, Bharati Vidyapeeth Deemed University, Pune, India
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21
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Tsioka E, Zacharia D, Soulis S, Mantas C, Petrikis P, Koullourou I, Hyphantis T, Kotsis K. Posttraumatic growth: the role of perceptions, coping and depressive symptoms among mothers of children with Autism Spectrum Disorder in Greece. INTERNATIONAL JOURNAL OF DEVELOPMENTAL DISABILITIES 2022; 70:925-934. [PMID: 39131762 PMCID: PMC11308954 DOI: 10.1080/20473869.2022.2151693] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Subscribe] [Scholar Register] [Received: 06/08/2022] [Revised: 11/21/2022] [Accepted: 11/21/2022] [Indexed: 08/13/2024]
Abstract
Background: Parenting a child with Autism Spectrum Disorder (ASD) may lead to emotional distress. However, it has been recognized that it can also be accompanied with positive experiences that may conduce parents to posttraumatic growth (PTG). Few studies have investigated the factors that may be associated with growth. The present study aimed to assess the role of maternal perceptions, coping strategies and depressive symptoms to PTG. Method: In this cross-sectional study, 123 mothers of ASD offspring completed self-reported questionnaires to assess posttraumatic growth (PTGI); coping strategies (Βrief-COPE); perceptions about ASD (B-IPQ) and depressive symptoms (PHQ-9). Hierarchical regression analysis was used to assess their independent associations. Results: A significant proportion of mothers (56.1%) reported moderate to high growth levels (PTGI ≥ 63). Nearly half of the mothers (46.3%) reported clinically significant depressive symptoms. Engagement (b = 0.361), cognitive reframing (b = 0.214), personal control (b = 0.200) and depressive symptoms (b = -0.232) were independently and significantly associated with PTG. Conclusions: Mothers of children with ASD may experience moderate to high PTG. Engagement, cognitive reframing, personal control and depressive symptoms were significant predictors of growth level. Interventions aiming to support mothers to potentiate their personal control over ASD, to use adaptive coping strategies and to reduce distress may facilitate their growth.
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Affiliation(s)
- Eleftheria Tsioka
- Department of Primary Education, Faculty of Education, University of Ioannina, Ioannina, Greece
| | - Dimitra Zacharia
- Department of Primary Education, Faculty of Education, University of Ioannina, Ioannina, Greece
| | - Spyridon Soulis
- Department of Primary Education, Faculty of Education, University of Ioannina, Ioannina, Greece
| | - Christos Mantas
- Department of Psychiatry, Faculty of Medicine, School of Health Sciences, University of Ioannina, Ioannina, Greece
| | - Petros Petrikis
- Department of Psychiatry, Faculty of Medicine, School of Health Sciences, University of Ioannina, Ioannina, Greece
| | - Iouliani Koullourou
- Department of Psychiatry, Faculty of Medicine, School of Health Sciences, University of Ioannina, Ioannina, Greece
| | - Thomas Hyphantis
- Department of Psychiatry, Faculty of Medicine, School of Health Sciences, University of Ioannina, Ioannina, Greece
| | - Konstantinos Kotsis
- Department of Psychiatry, Faculty of Medicine, School of Health Sciences, University of Ioannina, Ioannina, Greece
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22
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Ferrer Vidal F, Vilaseca Momplet R, Bersabé RM. Relationship between parental perceptions, family income and support received with family quality of life in families with a child with an intellectual disability. SIGLO CERO REVISTA ESPAÑOLA SOBRE DISCAPACIDAD INTELECTUAL 2022. [DOI: 10.14201/scero202253489108] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 12/23/2022]
Abstract
Research has shown that families raising a child with intellectual disability (ID) face many challenges and need to implement adaptation strategies. Some authors suggest that positive parental perceptions and perceived control could reduce emotional impact and promote family wellbeing. Nevertheless, there are few studies about the relationship between parental perceptions and family quality of life (FQoL) in those families. In this study, we used data from a sample of 251 Spanish parents whose children have ID. Positive perceptions scale and control perceptions scale, Spanish FQoL scale under 18 years-old and a sociodemographic questionnaire were administered to those families. The results of bivariate analysis showed that some dimensions of positive perceptions were related to different areas of FQoL, for example, social inclusion and family accommodation. FQoL was associated with family income and support received. To predict the FQoL level, a multivariate linear regression analysis was conducted. Results indicated that FQoL scores can be predicted by a linear combination of positive perceptions and family income. Practical implications for promoting FQoL in these families are discussed.
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23
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Abouelseoud MO, Saini P, Almuraisi MJ, Khan YS. Short Report. An innovative training programme for families of children and adolescents with Autism Spectrum Disorder in Qatar: Parents as interventionists. RESEARCH IN DEVELOPMENTAL DISABILITIES 2022; 131:104368. [PMID: 36334402 DOI: 10.1016/j.ridd.2022.104368] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 09/07/2022] [Accepted: 10/18/2022] [Indexed: 06/16/2023]
Abstract
INTRODUCTION Previous research has established the association of maladaptive behaviours exhibited by individuals with Autism Spectrum Disorder (ASD) with an increase in the extent of care burden among their caregivers. The mental health needs of caregivers and their effective management, therefore, need to be given due consideration. The main aim of this paper is to reiterate the significance of the role of training programmes for caregivers in enhancing their knowledge and enabling them to manage behavioural challenges with more independence and confidence. METHODS The aims, structure, and content of the ASD training programme for caregivers implemented by the specialist child and adolescent mental health service, Hamad Medical Corporation, are described. Sixty families have benefited from this initiative so far. A summary of the feedback provided by forty caregivers, all biological parents, is also summarised. RESULTS The mean score related to knowledge among participants before and after attending the training increased from 3.28 to 4.41. Out of the 40 parents who provided feedback, 27 (67.5%) reported an increase in their understanding of the topic after attendance. CONCLUSION This initiative consolidates the significance of programmes focusing on enhancing awareness and improving coping among caregivers of children and young people with ASD.
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Affiliation(s)
| | - Prerana Saini
- Child and Adolescent Mental Health Service, Hamad Medical Corporation, Qatar.
| | - May Jasim Almuraisi
- Child and Adolescent Mental Health Service, Hamad Medical Corporation, Qatar.
| | - Yasser Saeed Khan
- Child and Adolescent Mental Health Service, Hamad Medical Corporation, Qatar.
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24
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Maladaptive Behavior and Associated Factors among Young Children with Autism. Indian J Pediatr 2022; 89:1134-1136. [PMID: 35917001 DOI: 10.1007/s12098-022-04286-x] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/13/2022] [Revised: 05/15/2022] [Accepted: 05/19/2022] [Indexed: 11/05/2022]
Abstract
The present study assessed the prevalence of clinically significant maladaptive behaviors and associated factors among young male children diagnosed with autism. A cross-sectional study including mothers of 88 male children with autism aged 2 to 5 y old was conducted in the year 2019. Using the Child Behavior Checklist (CBCL), mothers rated their child's maladaptive behaviors. CBCL overall scores in the clinically relevant range were found in 76 (86.4%) children with autism (87.5% and 42% children had clinically significant internalizing and externalizing problems, respectively). Withdrawn (94.3%), attention problems (60.2%), and sleep problems (53.4%) were the predominant CBCL syndrome scales. Sociodemographic factors like autism severity and caffeine consumption were found to be significantly associated with maladaptive behaviors. There is an urgent need for designing effective behavioral management strategies incorporating various risk factors to enhance the quality of life among these vulnerable children.
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25
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O’Brien MJ, Pelzel KE, Hendrix NM, Schieltz KM, Miller K, Call NA, Tsami L, Lerman DC, Berg WK, Kopelman TG, Wacker DP, Lindgren SD. Parent Ratings of Generalized and Indirect Effects of Functional Communication Training for Children with Autism Spectrum Disorder. Behav Modif 2022; 46:971-1001. [PMID: 34041956 PMCID: PMC11504322 DOI: 10.1177/01454455211018815] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/17/2022]
Abstract
Functional communication training (FCT) is a behavioral treatment that has been shown to reduce problem behavior and increase appropriate communication in young children with autism spectrum disorder (ASD). In this study, we assessed the effects of FCT on targeted and nontargeted problem behaviors outside of the training context, as well as parent stress, for 30 young children with ASD and their parents. Indirect measures of generalization treatment effects were administered prior to and following FCT treatment delivered via telehealth. Children demonstrated significant improvement on both targeted (measured via observation) and nontargeted (measured via checklist) problem behaviors, both within and outside of the training context, and parent stress was significantly reduced following treatment. These results suggest that the impact of FCT may extend beyond the training context for both the children being treated and the parents delivering treatment, even when generalization is not specifically programmed for during treatment.
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Affiliation(s)
- Matthew J. O’Brien
- The University of Iowa, Iowa City, IA, USA
- The University of Iowa Stead Family Children’s Hospital, Iowa City, IA, USA
| | - Kelly E. Pelzel
- The University of Iowa, Iowa City, IA, USA
- The University of Iowa Stead Family Children’s Hospital, Iowa City, IA, USA
| | - Nicole M. Hendrix
- Marcus Autism Center, Atlanta, GA, USA
- Children’s Healthcare of Atlanta and Emory University, Atlanta, GA, USA
| | - Kelly M. Schieltz
- The University of Iowa, Iowa City, IA, USA
- The University of Iowa Stead Family Children’s Hospital, Iowa City, IA, USA
| | - Kenzie Miller
- The University of Iowa, Iowa City, IA, USA
- The University of Iowa Stead Family Children’s Hospital, Iowa City, IA, USA
| | - Nathan A. Call
- Marcus Autism Center, Atlanta, GA, USA
- Children’s Healthcare of Atlanta and Emory University, Atlanta, GA, USA
| | - Loukia Tsami
- The University of Houston – Clear Lake, Houston, TX, USA
| | | | - Wendy K. Berg
- The University of Iowa, Iowa City, IA, USA
- The University of Iowa Stead Family Children’s Hospital, Iowa City, IA, USA
| | - Todd G. Kopelman
- The University of Iowa, Iowa City, IA, USA
- The University of Iowa Stead Family Children’s Hospital, Iowa City, IA, USA
| | - David P. Wacker
- The University of Iowa, Iowa City, IA, USA
- The University of Iowa Stead Family Children’s Hospital, Iowa City, IA, USA
| | - Scott D. Lindgren
- The University of Iowa, Iowa City, IA, USA
- The University of Iowa Stead Family Children’s Hospital, Iowa City, IA, USA
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26
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Support Needs and Parent Outcomes in Arab Families of Children with Autism Living in the United Kingdom. Brain Sci 2022; 12:brainsci12081114. [PMID: 36009177 PMCID: PMC9405880 DOI: 10.3390/brainsci12081114] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/26/2022] [Revised: 08/14/2022] [Accepted: 08/19/2022] [Indexed: 11/27/2022] Open
Abstract
Research on the experiences of Arab families of children with autism living in non-Arab countries is scarce. A survey investigated the support needs, psychological distress, and parental relationships of Arab parents (n = 100) of children with autism living in the United Kingdom (UK). The survey consisted of five main questionnaires: a demographic questionnaire, the GO4KIDDS Brief Adaptive Scale, the Family Needs Survey, the Strengths and Difficulties Questionnaire, and the Hospital Anxiety and Depression Scale. Descriptive analysis indicated that the most frequently identified support needs were information, community services, and explaining to others. Parents reported high levels of psychological distress, a high level of parental relationship satisfaction with their spouse, and few parental disagreements about their child with autism. Regression analyses showed that increased child behavior problems predicted more total family needs. Higher levels of child prosocial behavior, the better health status of parents, and a larger number of children in the family were associated with lower levels of parental psychological distress. A longer time living in the UK was associated with more parental disagreement over issues related to the child with ASD. Reducing child behavior problems and increasing child prosocial behavior may be important targets for support and intervention to improve outcomes for Arab parents of autistic children.
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Severity of Child Autistic Symptoms and Parenting Stress in Mothers of Children with Autism Spectrum Disorder in Japan and USA: Cross-Cultural Differences. AUTISM RESEARCH AND TREATMENT 2022; 2022:7089053. [PMID: 35864923 PMCID: PMC9296302 DOI: 10.1155/2022/7089053] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Received: 01/06/2022] [Revised: 04/26/2022] [Accepted: 05/23/2022] [Indexed: 11/17/2022]
Abstract
The purpose of this study was to compare the relationship between parenting stress and autistic symptom severity in the U.S. and Japan. Fifty-two U.S. and 51 Japanese mothers of children aged 2–12 with autism completed measures of parenting stress and child characteristics, including the parenting stress index (PSI), the social communication questionnaire (SCQ), and social responsiveness scale-2 (SRS-2). There was a nonlinear relationship between the child's autistic symptom severity and parenting stress in both countries. We also found some cultural differences: in the parent domain, the relationships between children's SCQ scores and PSI scores differed significantly between the U.S. and Japan. Our findings suggest that autistic severity symptom scores may reflect cross-cultural differences in parenting beliefs, views toward autism, and response styles for evaluating children's behavior. The findings also suggest that parents need support regardless of the child's autism severity, including those with mild to moderate symptoms. Expanding on this line of research and understanding cultural influences on parenting stress may help service providers and agencies offer more culturally sensitive services, parent-education courses, and intervention programs.
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Abstract
Objectives: This study investigates the current state and subjective meaning of “sharenting” using social media by mothers raising children with rare diseases. In addition, the future direction of parenting social support for parents using ICTs was explored.Methods: Among the mothers raising a children with rare diseases, those who informed their children of their diseases with hashtags(#) and shared their daily lives on social media, such as Instagram and Facebook, were purposefully sampled. Nine mothers with children age one to seven years with different rare diseases participated in the in-depth interviews.Results: Mothers raising children with rare diseases with low prevalence have met various parenting support needs through sharenting. In addition, it was found that many mothers were willing to support other parents with similar experiences by actively sharing their information or daily lives. In other words, sharenting not only enhances the positive cognitive and emotional experiences of mothers raising children with rare diseases but also provides an opportunity to contribute to society, ultimately helping support healthy parenting. Moreover, mothers benefited from various support that transcends time and space through sharenting using social media. Thus, social support for parents in need should be delivered through both traditional and digitalized support integrated with ICTs.Conclusion: To support the healthy development of a children with rare diseases, it is necessary to support the high quality of life of parents and their children. By integrating ICTs, individualized and customized social services can be flexibly provided to families and children with rare diseases that have been neglected.
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Olson L, Chen B, Ibarra C, Wang T, Mash L, Linke A, Kinnear M, Fishman I. Externalizing Behaviors are Associated with Increased Parenting Stress in Caregivers of Young Children with Autism. J Autism Dev Disord 2022; 52:975-986. [PMID: 33837887 PMCID: PMC9847471 DOI: 10.1007/s10803-021-04995-w] [Citation(s) in RCA: 18] [Impact Index Per Article: 6.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 03/29/2021] [Indexed: 01/21/2023]
Abstract
Parents of children diagnosed with autism spectrum disorder (ASD) report higher levels of stress than parents of typically developing children. Few studies have examined factors associated with parental stress in early childhood. Even fewer have investigated the simultaneous influence of sociodemographic, clinical, and developmental variables on parental stress. We examined factors associated with stress in parents of young children with ASD. Multiple regression models were used to test for associations between socioeconomic indices, developmental measures, and parental stress. Externalizing behaviors, communication, and socialization skills accounted for variance in parental stress, controlling for ASD diagnosis. Results highlight the importance of interventions aimed at reducing externalizing behaviors in young children as well as addressing stress in caregivers of children with ASD.
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Affiliation(s)
- Lindsay Olson
- Brain Development Imaging Laboratories, Department of Psychology, San Diego State University, 6363 Alvarado Ct., Suite 200, San Diego, CA 92120, USA,San Diego State University/UC San Diego Joint Doctoral Program in Clinical Psychology, San Diego, USA
| | - Bosi Chen
- Brain Development Imaging Laboratories, Department of Psychology, San Diego State University, 6363 Alvarado Ct., Suite 200, San Diego, CA 92120, USA,San Diego State University/UC San Diego Joint Doctoral Program in Clinical Psychology, San Diego, USA
| | - Cynthia Ibarra
- Brain Development Imaging Laboratories, Department of Psychology, San Diego State University, 6363 Alvarado Ct., Suite 200, San Diego, CA 92120, USA
| | - Tiffany Wang
- Brain Development Imaging Laboratories, Department of Psychology, San Diego State University, 6363 Alvarado Ct., Suite 200, San Diego, CA 92120, USA
| | - Lisa Mash
- Brain Development Imaging Laboratories, Department of Psychology, San Diego State University, 6363 Alvarado Ct., Suite 200, San Diego, CA 92120, USA,San Diego State University/UC San Diego Joint Doctoral Program in Clinical Psychology, San Diego, USA
| | - Annika Linke
- Brain Development Imaging Laboratories, Department of Psychology, San Diego State University, 6363 Alvarado Ct., Suite 200, San Diego, CA 92120, USA
| | - Mikaela Kinnear
- Brain Development Imaging Laboratories, Department of Psychology, San Diego State University, 6363 Alvarado Ct., Suite 200, San Diego, CA 92120, USA
| | - Inna Fishman
- Brain Development Imaging Laboratories, Department of Psychology, San Diego State University, 6363 Alvarado Ct., Suite 200, San Diego, CA 92120, USA,San Diego State University/UC San Diego Joint Doctoral Program in Clinical Psychology, San Diego, USA
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Williams CA, Bailey T, Hastings RP. Modelling triadic relationships in families of children with intellectual disability. JOURNAL OF APPLIED RESEARCH IN INTELLECTUAL DISABILITIES 2022; 35:843-855. [PMID: 35187793 PMCID: PMC9306971 DOI: 10.1111/jar.12988] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/15/2021] [Revised: 01/21/2022] [Accepted: 01/26/2022] [Indexed: 12/01/2022]
Abstract
Background Method Results Conclusions
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Affiliation(s)
- Caitlin A. Williams
- Centre for Educational Development, Appraisal, and Research (CEDAR) University of Warwick Coventry UK
| | - Tom Bailey
- Centre for Educational Development, Appraisal, and Research (CEDAR) University of Warwick Coventry UK
| | - Richard P. Hastings
- Centre for Educational Development, Appraisal, and Research (CEDAR) University of Warwick Coventry UK
- Centre for Developmental Psychiatry and Psychology, Department of Psychiatry Monash University Melbourne Victoria Australia
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Kwon S, O’Neill ME, Foster CC. The Associations of Child's Clinical Conditions and Behavioral Problems with Parenting Stress among Families of Preschool-Aged Children: 2018-2019 National Survey of Child Health. CHILDREN (BASEL, SWITZERLAND) 2022; 9:241. [PMID: 35204961 PMCID: PMC8869988 DOI: 10.3390/children9020241] [Citation(s) in RCA: 9] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Subscribe] [Scholar Register] [Received: 12/30/2021] [Revised: 02/03/2022] [Accepted: 02/09/2022] [Indexed: 11/17/2022]
Abstract
To understand parental stress resulting from parenting young children, the current literature has primarily focused on families of children with clinical conditions, but has placed far less attention on the general population. The aim of this study was to examine parenting stress related to children's clinical conditions and behavioral problems in a nationally representative sample of US children aged 3 to 5 years. The study sample included 8454 children aged 3 to 5 years and their parents who participated in the 2018-2019 US National Survey of Child Health (NSCH). Using online/paper NSCH questionnaires, parents reported their children's special health care needs (SHCN), clinically diagnosed mental, emotional, developmental, and behavioral (MEDB) problems (e.g., anxiety problem, developmental delay), and externalizing behaviors. Parents also reported the frequency of feeling aggravated from parenting the participating child as an indicator of elevated parenting stress. In the sample, the prevalence of elevated parenting stress was 5.1% overall (95% CI = 4.2, 6.0); however, it was significantly higher among parents of children with SHCN (20.8%; 95% CI = 16.7, 24.9), with MEDB problems (24.8%; 95% CI = 19.9, 29.8), and with externalizing behavior problems (14.7%; 95% CI = 11.8, 17.6). A multivariable logistic regression model showed that elevated parenting stress was associated with the child's SHCN (adjusted odds ratio [AOR] = 2.3; 1.3, 3.9), MEDB problems (AOR = 4.8; 95% CI = 2.5, 9.1), and externalizing behavior problems (AOR = 5.4; 95% CI = 3.1, 9.4). Even in children without SHCN or MEDB problems, externalizing behavior problems were associated with elevated parenting stress (AOR = 6.4; 95% CI = 3.3, 12.7). The findings call for greater attention to subclinical or yet to be diagnosed externalizing behavior problems among the general preschool-aged child population and their underestimated impact on parenting stress.
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Affiliation(s)
- Soyang Kwon
- Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL 60611, USA; (M.E.O.); (C.C.F.)
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Efstratopoulou M, Sofologi M, Giannoglou S, Bonti E. Parental Stress and Children’s Self-Regulation Problems in Families with Children with Autism Spectrum Disorder (ASD). J Intell 2022; 10:jintelligence10010004. [PMID: 35076548 PMCID: PMC8788508 DOI: 10.3390/jintelligence10010004] [Citation(s) in RCA: 12] [Impact Index Per Article: 4.0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/16/2021] [Revised: 01/08/2022] [Accepted: 01/13/2022] [Indexed: 02/06/2023] Open
Abstract
Background: Increased parental stress is strongly related to the severity of autism spectrum disorder (ASD) symptomatology. Parents’ coping strategies and social support issues add to the complexity of this relationship. Aim: The present study investigated the relationship between self-regulation skills and parenting stress in parents of nonverbal children with ASD. Methods and procedure: The Parenting Stress Index–Short Form (PSI-SF) was administered to 75 families, and self-regulation scores on a Motor Behavior Checklist for children (MBC) were recorded by students’ class teachers (level of functioning-behavioral problems). In addition, interviews were conducted with a focus group of six parents (four mothers and two fathers) to explore the underline factors of parental stressin-depth. Results: Correlation analyses revealed that parenting stress was positively correlated with elevated scores on MBC children’s self-regulation subscale. On the other hand, parenting stress was negatively correlated with the level of social functional support reported. Qualitative data were analyzed using transcripts, revealing additional stressors for families and parents, and resulting in recommendations to overcome these factors. Conclusions and implications: Aiming at developing strategies to improve self-regulation skills in nonverbal children with ASD may be particularly important in reducing parental stress for families having nonverbal children with autism and other developmental disabilities. Parents’ stressors and suggestions during interviews are also discussed.
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Affiliation(s)
- Maria Efstratopoulou
- Department of Special Education (CEDU), United Arab Emirates University (UAEU), Al Ain P.O. Box 15551, United Arab Emirates;
| | - Maria Sofologi
- Laboratory of Psychology, Department of Early Childhood Education, School of Education, University of Ioannina, 45100 Ioannina, Greece;
- Institute of Humanities and Social Sciences, University Research Centre of Ioannina (URCI), 45110 Ioannina, Greece
| | - Sofia Giannoglou
- First Psychiatric Clinic, School of Medicine, Faculty of Health Sciences, Aristotle University of Thessaloni-ki, “Papageorgiou” General Hospital, Ring Road Thessaloniki, N. Efkarpia, 54603 Thessaloniki, Greece;
| | - Eleni Bonti
- First Psychiatric Clinic, School of Medicine, Faculty of Health Sciences, Aristotle University of Thessaloni-ki, “Papageorgiou” General Hospital, Ring Road Thessaloniki, N. Efkarpia, 54603 Thessaloniki, Greece;
- Department of Education, School of Education, University of Nicosia, Nicosia 2417, Cyprus
- Correspondence:
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Deb S, Limbu B. Support staff liaising effectively with family caregivers: Findings from a co-design event and recommendation for a staff training resource. Front Psychiatry 2022; 13:977442. [PMID: 36245872 PMCID: PMC9555056 DOI: 10.3389/fpsyt.2022.977442] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/24/2022] [Accepted: 08/16/2022] [Indexed: 12/02/2022] Open
Abstract
A high proportion of people with intellectual disabilities (ID) and autism spectrum disorder (ASD) are prescribed psychotropic medications such as antipsychotics, antidepressants etc., outside their licensed indications, primarily for the management of behaviors that challenge (BtC) in the absence of a psychiatric disorder. Examples of BtC are aggression to people and property or self-injury. BtC could be challenging to manage and may cause the person with ID/ASD and their caregivers distress, breakdown of community placement leading to hospitalization, and restrictive practices such as restraint or inappropriate medication use. Caregivers play a pivotal role in the prescribing process. However, many family caregivers feel that they have not been fully involved in the shared decision-making process about the care planning of their relatives with ID/ASD. To address the public health concern regarding the overuse of off-license prescribing in people with ID/ASD, we have recently developed a training programme called SPECTROM (Short-term Psycho-Education for Carers To Reduce OverMedication of people with intellectual disabilities) for direct care staff who support people with ID/ASD within community settings. We used co-production and a modified Experience-Based Co-Design (EBCD) method to develop SPECTROM, which involved a literature review, four focus groups and a co-design event day involving 26 stakeholders. Recommendations from the co-design event day were analyzed by a Programme Development Group (PDG) consisting of 21 stakeholders who made the final recommendations to the project team regarding the contents and the format of SPECTROM, which was finalized after receiving feedback from further 59 stakeholders. SPECTROM has web-based resources introduced through two core modules in face-to-face workshops/training. A small field test found SPECTROM was effective in improving staff's knowledge of psychotropic medications and attitude toward BtC and people with ID (p < 0.05). One of the 14 STOMP modules is "Effective liaison with family carers and advocates". In this paper, we have presented data from the co-design event day recommendations for this particular module. The group recommended ways to improve collaborative working and effective shared decision-making with family caregivers and people with ID/ASD.
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Affiliation(s)
- Shoumitro Deb
- Department of Brain Sciences, Faculty of Medicine, Imperial College London, London, United Kingdom
| | - Bharati Limbu
- Department of Brain Sciences, Faculty of Medicine, Imperial College London, London, United Kingdom
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Schmeer A, Harris VW, Forthun L, Valcante G, Visconti B. Through the eyes of a child: Sibling perspectives on having a sibling diagnosed with autism. RESEARCH IN DEVELOPMENTAL DISABILITIES 2021; 119:104066. [PMID: 34673468 DOI: 10.1016/j.ridd.2021.104066] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 05/05/2021] [Revised: 07/29/2021] [Accepted: 08/13/2021] [Indexed: 06/13/2023]
Abstract
BACKGROUND Sibling perspectives on the experiences of families caring for an autistic child are often overlooked in autism research. While qualitative research on these lived experiences has grown, it continues to primarily focus on parent reports. AIMS This study explored how having a sibling with autism impacts the non-autistic siblings within a family systems framework. The goal of the current study was to expand the literature by exploring the impacts of autism on the sibling subsystem as reported by the parents and the non-autistic siblings themselves. METHODS AND PROCEDURES The researchers interviewed 15 non-autistic siblings (aged 7-17) and 15 parents of children with autism to understand the experience of growing up with a sibling with autism. Content analysis was used to develop the interview protocol and analyze responses. Parent and non-autistic sibling reports of both siblings' effects on each other's development are triangulated with existing research. RESULTS Findings indicate novel emotional skill-building occurs in non-autistic siblings, as well as some unique risk factors for internalizing and externalizing problems if non-autistic siblings' needs become deprioritized. Family stress, external relationships, intrapersonal and social skill development, and other implications of this unique relationship are discussed.
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Khan YS, Khan AW, Tahir ME, Hammoudeh S, Shamlawi MA, Alabdulla M. The impact of COVID-19 pandemic social restrictions on individuals with autism spectrum disorder and their caregivers in the Stateof Qatar: A cross-sectional study. RESEARCH IN DEVELOPMENTAL DISABILITIES 2021; 119:104090. [PMID: 34624722 PMCID: PMC8481093 DOI: 10.1016/j.ridd.2021.104090] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Figures] [Subscribe] [Scholar Register] [Received: 02/24/2021] [Revised: 09/26/2021] [Accepted: 09/26/2021] [Indexed: 06/13/2023]
Abstract
INTRODUCTION Previous research has established an association between changes to the daily routine of individuals with Autism Spectrum Disorder (ASD) and increase in maladaptive behaviours. The relationship between maladaptive behaviours in autistic individuals and increase in care burden among their caregivers is also well established. However, no study has yet examined these associations in the context of the COVID-19 pandemic. The main aim of this study was to explore the impact of COVID-19 restrictions on autistic individuals and their caregivers. METHODS A questionnaire-based cross-sectional study conducted with the caregivers of 58 autistic individuals across the mental health services at Hamad Medical Corporation, Doha, Qatar. The extent of care burden was measured using the Care Burden Interview, whereas changes in behaviour in autistic individuals was assessed using the Revised Overt Aggression Scale. RESULTS A total of 58 caregivers participated in the study. Out of these, 24 (41 %) reported a clinically significant increase in their care burden. Among caregivers reporting an increase in care burden, two-third were caring for individuals whose behaviour either remained unchanged or improved during social restrictions. Nine autistic people (15.5 %) were reported to have no aggression prior to the implementation of COVID-19 social restrictions compared to 13 (22.4%) individuals during COVID-19 social restrictions. Minimal, mild and moderate aggression were reported in 27 (46.6 %), 21 (36.2 %), and 1 (1.7 %) patients respectively, before COVID-19 social restrictions compared to 29 (50 %), 15 (25.9), and 1 (1.7 %) during COVID-19 restrictions. Severe aggression was not reported in any patient either before or during COVID-19 social restrictions. CONCLUSION This study showed reduced levels of aggression in autistic individuals but an increase in care burden among their caregivers during the COVID-19 social restrictions highlighting the need of supporting patients and caregivers alike.
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Lee EY, Neil N, Friesen DC. Support needs, coping, and stress among parents and caregivers of people with Down syndrome. RESEARCH IN DEVELOPMENTAL DISABILITIES 2021; 119:104113. [PMID: 34678707 DOI: 10.1016/j.ridd.2021.104113] [Citation(s) in RCA: 12] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 10/05/2020] [Revised: 09/10/2021] [Accepted: 10/08/2021] [Indexed: 06/13/2023]
Abstract
BACKGROUND Caregiving for an individual with Down syndrome (DS) results in needs that can impact the stress and wellbeing of the entire family. These needs may also vary over the lifespan of the individual with DS. Coping strategies may affect stress levels and reduce the effects of unmet needs. AIMS (1) Do important unmet needs (IUNs), coping, and stress vary between parents and caregivers of adults compared to children with DS? (2) What is the relationship between stress, coping, and needs for parents and caregivers of people with DS? METHODS 152 parents and caregivers of people with DS of various age groups completed an online survey including: demographic information, Family Needs Survey - Revised, Questionnaire on Resources and Stress - Friedrich Version, and the Family Crisis Oriented Personal Scales. Comparisons of IUNs, coping and stress between caregivers of adults and caregivers of children with DS were conducted. Relationships between stress, coping, and needs were explored using correlations and multiple regression. RESULTS IUNs were greater for parents and caregivers of children than for parents and caregivers of adults. Stress level was positively correlated with the number of IUNs, and great use of coping strategies were associated with less stress and fewer IUNs. The coping styles that predicted stress were different for caregivers of children versus adults. CONCLUSION The results of this research highlight the importance of considering age in relation to needs and stress among families with a child with DS. Fostering effective coping strategies, including acquiring social support, is likely to support positive outcomes for caregivers of people with DS.
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Affiliation(s)
- Esther Yejin Lee
- Faculty of Education, Western University, 1137 Western Road, London, ON, N6G 1G7, Canada
| | - Nicole Neil
- Faculty of Education, Western University, 1137 Western Road, London, ON, N6G 1G7, Canada.
| | - Deanna C Friesen
- Faculty of Education, Western University, 1137 Western Road, London, ON, N6G 1G7, Canada
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Vernhet C, Michelon C, Dellapiazza F, Rattaz C, Geoffray MM, Roeyers H, Picot MC, Baghdadli A. Perceptions of parents of the impact of autism spectrum disorder on their quality of life and correlates: comparison between mothers and fathers. Qual Life Res 2021; 31:1499-1508. [PMID: 34822048 DOI: 10.1007/s11136-021-03045-3] [Citation(s) in RCA: 16] [Impact Index Per Article: 4.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 11/18/2021] [Indexed: 11/25/2022]
Abstract
PURPOSE To compare mothers and fathers perceptions of the impact of autism spectrum disorder on their Quality of Life (QoL), we used the Parental-Developmental Disorders-Quality of Life scale (Par-DD-QoL). METHOD The perception of QoL of mothers and fathers was compared for 130 pairs of parents of children with ASD and the associated variables were investigated. RESULTS Mothers perceived a significantly greater impact of ASD on their QoL than fathers. Parents perceived a higher impact of ASD on global QoL when their child's adaptive skills were low and when the level of aberrant behaviors was high. More precisely, the perception of QoL by the mothers was negatively associated with their child's internalized disorders, whereas the perception of QoL by the fathers was negatively associated with their child's externalized disorders. Neither the mothers' nor the fathers' perception of the impact on QoL was associated with their children's age or the severity of their autistic symptoms. Some parental factors, such as being members of a family association, having benefited from training in ASD and having experienced a disruption in professional activity were associated with a greater impact on their QoL. CONCLUSION Our finding that the perceived impact of ASD on QoL differed between mothers and fathers argues for individualized psychosocial support. Moreover, the strong correlation between the child's clinical characteristics and the perception by parents of a higher impact of ASD on QoL should be seen as red flag concerning the needs of the parents in terms of social and educational support. TRIAL REGISTRATION NUMBER NCT02625116 (October 2015).
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Affiliation(s)
- Christelle Vernhet
- Centre de Ressources Autisme Languedoc-Roussillon et Centre d'excellence sur l'Autisme et les Troubles Neurodéveloppementaux, CHU Montpellier, 39 Avenue Charles Flahault, 34295 Cedex 05, Montpellier, France
| | - Cécile Michelon
- Centre de Ressources Autisme Languedoc-Roussillon et Centre d'excellence sur l'Autisme et les Troubles Neurodéveloppementaux, CHU Montpellier, 39 Avenue Charles Flahault, 34295 Cedex 05, Montpellier, France
| | - Florine Dellapiazza
- Centre de Ressources Autisme Languedoc-Roussillon et Centre d'excellence sur l'Autisme et les Troubles Neurodéveloppementaux, CHU Montpellier, 39 Avenue Charles Flahault, 34295 Cedex 05, Montpellier, France
| | - Cécile Rattaz
- Centre de Ressources Autisme Languedoc-Roussillon et Centre d'excellence sur l'Autisme et les Troubles Neurodéveloppementaux, CHU Montpellier, 39 Avenue Charles Flahault, 34295 Cedex 05, Montpellier, France
| | - Marie-Maude Geoffray
- Child and Adolescent Psychiatry Departement, Center for Assessment and Diagnostic of Autism, Le Vinatier Hospital, Bron, France
| | - Herbert Roeyers
- Department of Experimental Clinical and Health Psychology, Ghent University, Ghent, Belgium
| | - Marie-Christine Picot
- Clinical Research Unit, Department of Medical Information, CHU Montpellier, Montpellier, France
- Université Paris-Saclay, UVSQ, Inserm, CESP, Team DevPsy, 94807, Villejuif, France
| | - Amaria Baghdadli
- Centre de Ressources Autisme Languedoc-Roussillon et Centre d'excellence sur l'Autisme et les Troubles Neurodéveloppementaux, CHU Montpellier, 39 Avenue Charles Flahault, 34295 Cedex 05, Montpellier, France.
- Université Paris-Saclay, UVSQ, Inserm, CESP, Team DevPsy, 94807, Villejuif, France.
- Faculté de Médecine, Université de Montpellier, Montpellier, France.
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Park EY. Validity of the Friedrich Short Form of the Questionnaire on Resources and Stress in Parents of Individuals with Autism Spectrum Disorder. INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH 2021; 18:ijerph182212174. [PMID: 34831929 PMCID: PMC8618196 DOI: 10.3390/ijerph182212174] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Subscribe] [Scholar Register] [Received: 10/08/2021] [Revised: 11/17/2021] [Accepted: 11/18/2021] [Indexed: 12/23/2022]
Abstract
There is insufficient knowledge about the psychometric properties of the Friedrich short form of the Questionnaire on Resources and Stress (QRS-F) used to measure the caregiving burden of caregivers of individuals with autism spectrum disorder (ASD). The present study, therefore, aimed to confirm the validity of the QRS-F. The data selected using the systematic sampling method were analyzed to verify the factor structure of the QRS-F on parents of individuals with ASD. Exploratory and confirmatory factor analyses were employed to confirm the validity and the factor structure of the scale. The Pearson correlation coefficient was calculated to verify the relation with other measures. The original factor model was not appropriate to assess the caregiving burden on parents of individuals with ASD because the models did not show adequate fit indices. The evaluation of results based on a total score was explored, which demonstrated the expected association between depression severity and caregiving time. Overall, this study supports the use of the QRS-F for measuring the caregiving burden of parents of individuals with ASD by comparing the total score with other related variables.
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Affiliation(s)
- Eun-Young Park
- Department of Secondary Special Education, Jeonju University, Jeonju 55069, Korea
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Koukouriki E, Athanasopoulou E, Andreoulakis E. Feelings of Loneliness and Social Dissatisfaction in Siblings of Children with Autism Spectrum Disorders: The Role of Birth Order and Perceived Social Support. J Autism Dev Disord 2021; 52:4722-4738. [PMID: 34741232 DOI: 10.1007/s10803-021-05308-x] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 09/24/2021] [Indexed: 11/29/2022]
Abstract
Loneliness has been associated with several adverse psychosocial outcomes in childhood and adolescence. The present study aimed to investigate feelings of loneliness and social dissatisfaction in school-aged typically-developing (TD) siblings of children with an autism spectrum disorder (ASD). For this purpose, 118 siblings of children with ASD and 115 siblings of TD children and one of their parents participated in this study. Siblings of ASD-children reported higher levels of loneliness and social dissatisfaction than the controls. The hierarchical multiple regressions performed revealed that those feelings were inversely associated with being the first-born and with specific aspects of social support as perceived by the parent. The younger siblings of ASD-children seem to be in need of certain interventions beyond social support.
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Affiliation(s)
- Evangelia Koukouriki
- Special Education Laboratory, Department of Primary Education, University of Ioannina, Ioannina, Greece. .,Centre for Educational and Counseling Services of Trikala, 2 Botsari str, 42132, Trikala, Greece.
| | - Evangelini Athanasopoulou
- Community Centre for Mental Health of Children and Adolescents, Department of Child and Adolescent Psychiatry, General Hospital of Thessaloniki "G. Papanikolaou", 57010, Thessaloníki, Greece
| | - Elias Andreoulakis
- Adult Psychiatric Unit, Department of Thessaloniki, Hellenic Centre for Mental Health and Research, Thessaloníki, Greece
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Ten Hoopen LW, de Nijs PFA, Duvekot J, Greaves-Lord K, Hillegers MHJ, Brouwer WBF, Hakkaart-van Roijen L. Caring for Children with an Autism Spectrum Disorder: Factors Associating with Health- and Care-Related Quality of Life of the Caregivers. J Autism Dev Disord 2021; 52:4665-4678. [PMID: 34724164 PMCID: PMC9556348 DOI: 10.1007/s10803-021-05336-7] [Citation(s) in RCA: 5] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 10/14/2021] [Indexed: 12/03/2022]
Abstract
This study investigated the association of child, caregiver, and caregiving measurements with the quality of life (QoL) in 81 caregivers (mostly parents) of clinically referred children with autism spectrum disorder (ASD). We used the EuroQol five-dimensional (EQ-5D) questionnaire and the care-related QoL questionnaire (CarerQol) to respectively assess health-related QoL and care-related QoL. Health-related QoL was associated with the caregiver’s internalizing problems and adaptive coping, explaining 38% of the variance. Parenting stress and adaptive coping were associated with the care-related QoL and explained 60% of the variance. Child variables were not associated with the caregiver’s health- and care-related QoL if caregiver and caregiving variables were taken into account. Findings indicate the importance of the caregiver’s mental health, coping, and parenting stress in caring for children with ASD.
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Affiliation(s)
- Leontine W Ten Hoopen
- Department of Child and Adolescent Psychiatry/Psychology, Erasmus MC, Sophia Children's Hospital, Rotterdam, P.O. Box 2040, 3000 CA, Rotterdam, The Netherlands. .,Erasmus School of Health Policy & Management, Erasmus University Rotterdam, Burgemeester Oudlaan 50, 3062 PA, Rotterdam, The Netherlands.
| | - Pieter F A de Nijs
- Department of Child and Adolescent Psychiatry/Psychology, Erasmus MC, Sophia Children's Hospital, Rotterdam, P.O. Box 2040, 3000 CA, Rotterdam, The Netherlands
| | - Jorieke Duvekot
- Department of Child and Adolescent Psychiatry/Psychology, Erasmus MC, Sophia Children's Hospital, Rotterdam, P.O. Box 2040, 3000 CA, Rotterdam, The Netherlands
| | - Kirstin Greaves-Lord
- Department of Child and Adolescent Psychiatry/Psychology, Erasmus MC, Sophia Children's Hospital, Rotterdam, P.O. Box 2040, 3000 CA, Rotterdam, The Netherlands.,Yulius Mental Health, P.O. Box 753, 3300 AT, Dordrecht, The Netherlands.,Jonx Autism Team Northern-Netherlands, Lentis Mental Health, Laan Corpus Den Hoorn 102-2, 9728 JR, Groningen, The Netherlands
| | - Manon H J Hillegers
- Department of Child and Adolescent Psychiatry/Psychology, Erasmus MC, Sophia Children's Hospital, Rotterdam, P.O. Box 2040, 3000 CA, Rotterdam, The Netherlands.,Yulius Mental Health, P.O. Box 753, 3300 AT, Dordrecht, The Netherlands
| | - Werner B F Brouwer
- Erasmus School of Health Policy & Management, Erasmus University Rotterdam, Burgemeester Oudlaan 50, 3062 PA, Rotterdam, The Netherlands
| | - Leona Hakkaart-van Roijen
- Erasmus School of Health Policy & Management, Erasmus University Rotterdam, Burgemeester Oudlaan 50, 3062 PA, Rotterdam, The Netherlands
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41
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Park JE. Effectiveness of creative arts-based parent training for parents with children with Autism Spectrum Disorder. ARTS IN PSYCHOTHERAPY 2021. [DOI: 10.1016/j.aip.2021.101837] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/12/2022]
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42
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Musetti A, Manari T, Dioni B, Raffin C, Bravo G, Mariani R, Esposito G, Dimitriou D, Plazzi G, Franceschini C, Corsano P. Parental Quality of Life and Involvement in Intervention for Children or Adolescents with Autism Spectrum Disorders: A Systematic Review. J Pers Med 2021; 11:894. [PMID: 34575671 PMCID: PMC8469292 DOI: 10.3390/jpm11090894] [Citation(s) in RCA: 29] [Impact Index Per Article: 7.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/04/2021] [Revised: 09/05/2021] [Accepted: 09/06/2021] [Indexed: 11/24/2022] Open
Abstract
Previous research has examined several parental, child-related, and contextual factors associated with parental quality of life (QoL) among parents with a child or an adolescent with autism spectrum disorders (ASD); however, no systematic review has examined the relationship between parental QoL and parental involvement in intervention. To fill this gap, a systematic review was conducted using four electronic databases and checked reference lists of retrieved studies. Records were included in the systematic review if they presented original data, assessed parental QoL, and involvement in intervention for children or adolescents with ASD, were published in peer-reviewed journals between 2000 and 2020, and were written in English. Among the 96 screened full-texts, 17 articles met the eligibility criteria. The selected studies included over 2000 parents of children or adolescents with ASD. Three categories of parental involvement (i.e., none, indirect, direct) were identified, which varied across studies, although most had direct parental involvement. The results from this review show that increased parental involvement in the intervention for children or adolescents with ASD may be one way to promote their QoL. However, further research specifically focused on parental involvement during the intervention for children and adolescents with ASD is warranted.
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Affiliation(s)
- Alessandro Musetti
- Department of Humanities, Social Sciences and Cultural Industries, University of Parma, Borgo Carissimi 10, 43121 Parma, Italy
| | - Tommaso Manari
- Department of Humanities, Social Sciences and Cultural Industries, University of Parma, Borgo Carissimi 10, 43121 Parma, Italy
| | - Barbara Dioni
- Department of Humanities, Social Sciences and Cultural Industries, University of Parma, Borgo Carissimi 10, 43121 Parma, Italy
- Fondazione Bambini e Autismo Onlus, 33170 Pordenone, Italy
| | - Cinzia Raffin
- Fondazione Bambini e Autismo Onlus, 33170 Pordenone, Italy
| | - Giulia Bravo
- Fondazione Bambini e Autismo Onlus, 33170 Pordenone, Italy
| | - Rachele Mariani
- Department of Dynamic and Clinical Psychology, Sapienza University of Rome, 00185 Rome, Italy
| | - Gianluca Esposito
- Social and Affective Neuroscience Lab, Psychology Program-SSS, Nanyang Technological University, Singapore 639818, Singapore
- Lee Kong Chian School of Medicine, Nanyang Technological University, Singapore 636921, Singapore
- Affiliative Behaviour and Physiology Lab, Department of Psychology and Cognitive Science, University Trento, 38068 Rovereto, Italy
| | - Dagmara Dimitriou
- Sleep Education and Research Laboratory, Department of Psychology and Human Development, UCL-Institute of Education, London WC1H 0AA, UK
- The National Institute for Stress, Anxiety, Depression and Behavioural Change (NISAD), 252 21 Helsingborg, Sweden
| | - Giuseppe Plazzi
- Department of Biomedical, Metabolic and Neural Sciences, University of Modena and Reggio Emilia, 41125 Modena, Italy
- IRCCS Institute of Neurological Sciences of Bologna (ISNB), 40139 Bologna, Italy
| | | | - Paola Corsano
- Department of Humanities, Social Sciences and Cultural Industries, University of Parma, Borgo Carissimi 10, 43121 Parma, Italy
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Yamane T. Longitudinal psychometric evaluation of the developmental disorder parenting stressor index with Japanese parents of children with autism. AUTISM : THE INTERNATIONAL JOURNAL OF RESEARCH AND PRACTICE 2021; 25:2034-2047. [PMID: 34378425 DOI: 10.1177/13623613211009349] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/17/2022]
Abstract
LAY ABSTRACT Parents of children with autism experience high rates of parenting stress. Assessing parenting stress in them has crucial clinical implications because increased parental stress is associated with psychological disorders and personal distress, which can result in worse child-parent relationships. Theorists have proposed that a person's cognitive appraisal determines whether or not a situation or an encounter is personally stressful. However, prior scales merely measure the outcomes of parental stress as a stress response: little the scales were designed to assess events and cognitive appraisal-related parenting stressors of parents of children with autism. We investigated whether a new index for assessing parenting stressors-the Developmental Disorder Parenting Stressor Index is a valid measure to assess parenting stressors of parents of children with autism using longitudinal online surveys at three times. Participants were 212 Japanese parents of children with autism aged 2-18 years who completed the Developmental Disorder Parenting Stressor Index and measures of autism symptoms and stress response . Overall, the findings indicated that the Developmental Disorder Parenting Stressor Index can be reliably used to measure both experiences and cognitive appraisal of parenting stressors among parents of children with autism. Moreover, the Developmental Disorder Parenting Stressor Index has several advantages and is a valuable measurement tool to be able to evaluate parenting stressors in clinical settings; Developmental Disorder Parenting Stressor Index is shorter, easier to complete, and can evaluate both viewpoints of parenting stressors.
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Factor Structure of the Brief Coping Orientation to Problems Experienced Inventory in Chinese (Brief-COPE-C) in Caregivers of Children with Chronic Illnesses. J Pediatr Nurs 2021; 59:63-69. [PMID: 33476915 DOI: 10.1016/j.pedn.2021.01.002] [Citation(s) in RCA: 6] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/09/2019] [Revised: 01/02/2021] [Accepted: 01/02/2021] [Indexed: 11/22/2022]
Abstract
PURPOSE This study aimed to translate and evaluate the factor structure of the Chinese version of the Brief Coping Orientation to Problems Experienced Inventory (Brief-COPE-C) among the caregivers of children with chronic illnesses. DESIGN AND METHODS In this cross-sectional study, we recruited 217 caregivers, aged 18 years and older and cared for children with chronic illnesses. All participants were recruited from two local hospitals in Hong Kong using convenience sampling. We excluded caregivers diagnosed with major psychiatric diseases, such as major depression or schizophrenia. RESULTS The Brief-COPE-C had good validity and three factors were identified: active coping, distraction, and dysfunctional coping. The content validity index was 0.97, and the item content validity index ranged from 0.83-1 for all 28 items. The Brief-COPE-C had adequate internal consistency. The Cronbach's alpha for the overall scale was 0.89, while the Intraclass Correlation Coefficient (ICC) was 0.876. CONCLUSIONS The Brief-COPE-C is a valid, reliable, and culturally appropriate tool for measuring coping in caregivers of children with chronic illnesses. PRACTICE IMPLICATIONS Use of the Brief-COPE-C to assess coping responses of caregivers can facilitate clinicians' and researchers' understanding of how these individuals cope. Hence, appropriate interventions can be implemented to improve caregivers' physical and psychological outcomes.
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García-López C, Recio P, Pozo P, Sarriá E. Psychological Distress, Disorder Severity, and Perception of Positive Contributions in Couples Raising Individuals With Autism. Front Psychol 2021; 12:694064. [PMID: 34267712 PMCID: PMC8276240 DOI: 10.3389/fpsyg.2021.694064] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/13/2021] [Accepted: 06/02/2021] [Indexed: 11/19/2022] Open
Abstract
Parents' perception of the positive contributions associated with raising children with autism is considered to be a protective factor in the process of psychological adaptation. Thus, it is essential to unveil what factors are related to this perception. We explore how parents' psychological distress (parental stress and anxiety) predicts the perception of positive contributions in fathers and mothers who raise individuals with different levels of autism severity. The sample comprises 135 couples (270 fathers and mothers) parenting individuals diagnosed with autism aged 3–38 years. Participants completed different self-report questionnaires, including measures of parental stress, anxiety, and positive contributions. To estimate the actor–partner interdependence model, data were analyzed using structural equation modeling (SEM) to explore transactional effects between fathers' and mothers' psychological distress and their perceptions of positive contributions associated with autism. Two separate multigroup models were tested, respectively, analyzing parental stress and anxiety. Each multigroup model considers two levels of disorder severity. The findings revealed that actor and partner effects of stress and anxiety were important predictors of the perception of positive contributions in both disorder severity groups. We conclude that it is necessary to develop family support programs that focus on controlling fathers' and mothers' stress and anxiety symptoms, as these mental states negatively impact the ability to perceive positive contributions.
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Affiliation(s)
- Cristina García-López
- Joint Research Institute National University for Distance Education and Health Institute Carlos III (IMIENS), Madrid, Spain.,Neurology Department, School Learning Disorders Unit (UTAE), Hospital Sant Joan de Déu, Barcelona, Spain
| | - Patricia Recio
- Joint Research Institute National University for Distance Education and Health Institute Carlos III (IMIENS), Madrid, Spain.,Department of Methodology of Behavioral Sciences, Faculty of Psychology, National University for Distance Education (UNED), Madrid, Spain
| | - Pilar Pozo
- Joint Research Institute National University for Distance Education and Health Institute Carlos III (IMIENS), Madrid, Spain.,Department of Methodology of Behavioral Sciences, Faculty of Psychology, National University for Distance Education (UNED), Madrid, Spain
| | - Encarnación Sarriá
- Joint Research Institute National University for Distance Education and Health Institute Carlos III (IMIENS), Madrid, Spain.,Department of Methodology of Behavioral Sciences, Faculty of Psychology, National University for Distance Education (UNED), Madrid, Spain
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46
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Lorang E, Hong J, Song J, DaWalt LS, Mailick M. Verbal Ability, Behavior Problems, and Mother-Child Relationship Quality in Autism Spectrum Disorder. J Autism Dev Disord 2021; 52:2463-2478. [PMID: 34129130 DOI: 10.1007/s10803-021-05133-2] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 06/05/2021] [Indexed: 01/19/2023]
Abstract
This study examined differences in mother-child relationship quality and parent-rated child behavior problems based on child verbal status (i.e., minimally verbal versus verbal) in mothers and their adolescent and adult children with autism spectrum disorder (n = 219 dyads; child Mage = 25.38 years, SD = 10.22). Relationship quality was assessed via parent-reported maternal burden and mother-child closeness, and coded speech samples ascertaining maternal critical and positive remarks regarding the child. Groups did not differ in relationship quality. The verbal group was more likely to display disruptive and socially inappropriate behaviors, but otherwise the groups did not differ in behavior problems. Verbal status moderated the relationship between behavior problems and negative (maternal burden, critical remarks) but not positive (mother-child closeness, positive remarks) aspects of relationship quality.
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Affiliation(s)
- Emily Lorang
- Waisman Center, University of Wisconsin-Madison, Madison, USA.
- Department of Communication Sciences and Disorders, Waisman Center, University of Wisconsin-Madison, Goodnight Hall, 1975 Willow Drive, Madison, WI, 53706, USA.
| | - Jinkuk Hong
- Waisman Center, University of Wisconsin-Madison, Madison, USA
| | - Jieun Song
- Waisman Center, University of Wisconsin-Madison, Madison, USA
| | | | - Marsha Mailick
- Waisman Center, University of Wisconsin-Madison, Madison, USA
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47
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Öztemiz S, Tekindal M. The effect of bibliotherapy on the development of self-efficacy of women with disabled children. INFORMATION DEVELOPMENT 2021. [DOI: 10.1177/02666669211015702] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 11/16/2022]
Abstract
The aim of this study is to reveal the effect of the bibliotherapy technique on the development of general self-efficacy of women with disabled children. The specific objective of the study is to draw attention to bibliotherapy as a method in the library and information science area. The research was conducted with 18 volunteers from 80 mothers of disabled children who received service from ZİÇEV (Mentally Handicapped Education and Protection Foundation) in the 2019-2020 academic year. Group work and the general self-efficacy scale was used to collect data. In the research, 2x2 mixed design (experiment – control – pre-test – post-test) was conducted. The self-efficacy level of the women was chosen as the dependent variable while the independent variable was bibliotherapy activity. 9 women were assigned to the experimental group and the other 9 were the control group. The bibliotherapy program, designed by the researcher, was in six sessions. Each session took 2 hours. The general self-efficacy scale was conducted again at the last session. Statistically significant results were observed between the experimental and control groups. The results of the study showed that bibliotherapy increased the self-efficacy of women with disabled children. The research drew attention to the importance of bibliotherapy in the process of tackling the low self-efficacy levels of women with disabled children. It is expected that the study will contribute to the literature by encouraging interdisciplinary research based on bibliotherapy.
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48
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Scibelli F, Fucà E, Guerrera S, Lupi E, Alfieri P, Valeri G, Vicari S. Clinical and individual features associated with maternal stress in young adolescents with autism spectrum disorder. Autism Res 2021; 14:1935-1947. [PMID: 34013607 DOI: 10.1002/aur.2539] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/26/2020] [Revised: 03/10/2021] [Accepted: 05/04/2021] [Indexed: 11/07/2022]
Abstract
Parents of people with autism spectrum disorder experience both negative stressful and positive events. Several clinical and socio-demographic features of children on the autism spectrum have been associated with parenting stress in their families. However, there have been few studies that focus on adolescents and the role of cognitive impairment has rarely been addressed. The main aim of the present research is to explore associations between autism symptoms, cognitive impairment, emotional and behavioral problems, socio-demographic features, and maternal stress in a sample of young adolescents with Autism Spectrum Disorder with and without cognitive impairment. Cognitive impairment and emotional and behavioral problems are associated with maternal stress, while autism symptoms seem to play a minor role. Maternal education and occupation are only associated with maternal stress in the group with cognitive impairment, while maternal age is stress-associated in the group of adolescents without cognitive impairment. Age-related implications for intervention and future research directions are discussed. LAY SUMMARY: Parents of individuals on the autism spectrum are exposed to both negative stressful and enriching experiences during their parenthood. While the influence of several child characteristics and socio-demographic features on parental stress during childhood has been widely explored in past studies, studies on teenagers are limited. The aim of the present research is to explore the influence of several characteristics on maternal stress levels in families with teenagers on the autism spectrum. We found that cognitive impairment and emotional and behavioral problems are associated with maternal stress, while autism symptoms seem to play a minor role. Socio-demographic features are not associated with maternal stress. Broadly speaking, the subjective perception of parental distress in both groups is less related to teenagers' characteristics then the perception of having a difficult interaction with the teenagers. We divided our participants into two groups (one group with cognitive impairment and the other group without). We found that mothers of teenagers with cognitive impairment are generally more stressed compared to the other group. Furthermore, we confirm that emotional and behavioral problems seem to play a major role in maternal stress (especially in the group without cognitive impairment), while autism symptoms seem to play a minor role. Furthermore, we found that maternal education/occupation and maternal age are associated with maternal stress in the group with and the group without cognitive impairment respectively. This research highlights the association between several variables and stress in mothers of adolescents on the spectrum. Results are discussed in the framework of previous findings highlighting the lack of adequate care and support services for families, especially for those of adolescents on the spectrum with cognitive impairment.
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Affiliation(s)
- Francesco Scibelli
- Child and Adolescent Neuropsychiatry Unit, Department of Neuroscience, Bambino Gesù Children's Hospital, IRCCS, Rome, Italy
| | - Elisa Fucà
- Child and Adolescent Neuropsychiatry Unit, Department of Neuroscience, Bambino Gesù Children's Hospital, IRCCS, Rome, Italy
| | - Silvia Guerrera
- Child and Adolescent Neuropsychiatry Unit, Department of Neuroscience, Bambino Gesù Children's Hospital, IRCCS, Rome, Italy
| | - Elisabetta Lupi
- Child and Adolescent Neuropsychiatry Unit, Department of Neuroscience, Bambino Gesù Children's Hospital, IRCCS, Rome, Italy
| | - Paolo Alfieri
- Child and Adolescent Neuropsychiatry Unit, Department of Neuroscience, Bambino Gesù Children's Hospital, IRCCS, Rome, Italy
| | - Giovanni Valeri
- Child and Adolescent Neuropsychiatry Unit, Department of Neuroscience, Bambino Gesù Children's Hospital, IRCCS, Rome, Italy
| | - Stefano Vicari
- Child and Adolescent Neuropsychiatry Unit, Department of Neuroscience, Bambino Gesù Children's Hospital, IRCCS, Rome, Italy.,Department of Life Sciences and Public Health, Università Cattolica del Sacro Cuore, Rome, Italy
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49
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Pereira AS, Azhari A, Hong CA, Gaskin GE, Borelli JL, Esposito G. Savouring as an Intervention to Decrease Negative Affect in Anxious Mothers of Children with Autism and Neurotypical Children. Brain Sci 2021; 11:brainsci11050652. [PMID: 34065747 PMCID: PMC8157107 DOI: 10.3390/brainsci11050652] [Citation(s) in RCA: 6] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/12/2021] [Revised: 05/05/2021] [Accepted: 05/12/2021] [Indexed: 11/17/2022] Open
Abstract
Savouring is an emotion regulation strategy and intervention that focuses on the process of attending, intensifying and prolonging positive experiences and positive affect associated with these memories. Personal savouring involves a reflection on positive memories that are specific to the individual and do not involve others. In contrast, relational savouring entails reflecting on instances when people were responsive to the needs of their significant others. Such interventions hold potential benefits in enhancing positive affect (PA) and reducing negative affect (NA) for both parents of children with autism spectrum disorder (ASD) and parents of neurotypical children. Adults with greater symptoms of generalised anxiety have been found to have less PA and more NA. However, no study has investigated the effects of a mother’s anxiety symptoms on the efficacy of savouring in enhancing PA and reducing NA. Thus, this paper combined personal and relational savouring to investigate whether savouring may enhance PA and reduce NA of a pooled sample of mothers of neurotypical children and mothers of children with ASD. 52 mothers of neurotypical children and 26 mothers of children with ASD aged 3–7 years old were given a series of questionnaires and randomly assigned to either relational savouring or personal savouring conditions. In relational savouring, mothers were asked to reflect upon a shared positive experience with their child while in the personal savouring condition, a personal positive experience was recalled. Across mothers of children with ASD and neurotypical children, findings suggest that savouring leads to a decrease in NA (p < 0.01) but not increases in PA. Similarly, mothers with higher levels of anxiety experience a greater decrease in NA (p < 0.001) compared to mothers with lower levels of anxiety post-savouring. This study proposes that a brief savouring intervention may be effective among mothers of preschoolers. As lower levels of negative affect is linked to healthier psychological well-being, mothers might be able to engage in more effective and warm parenting after savouring exercises, which would cultivate positive mother-child relationships that benefit their children in the long-term.
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Affiliation(s)
- Ariel S. Pereira
- Psychology Program, School of Social Sciences, Nanyang Technological University, Singapore 639798, Singapore; (A.S.P.); (A.A.); (C.A.H.)
| | - Atiqah Azhari
- Psychology Program, School of Social Sciences, Nanyang Technological University, Singapore 639798, Singapore; (A.S.P.); (A.A.); (C.A.H.)
| | - Chloe A. Hong
- Psychology Program, School of Social Sciences, Nanyang Technological University, Singapore 639798, Singapore; (A.S.P.); (A.A.); (C.A.H.)
| | - Gerin E. Gaskin
- Division of Behavioral and Organizational Sciences, School of Social Science, Policy and Evaluation, Claremont Graduate University, Claremont, CA 91711, USA;
| | - Jessica L. Borelli
- Department of Psychological Science, University of California, Irvine, CA 92697, USA;
| | - Gianluca Esposito
- Psychology Program, School of Social Sciences, Nanyang Technological University, Singapore 639798, Singapore; (A.S.P.); (A.A.); (C.A.H.)
- Lee Kong Chian School of Medicine, Nanyang Technological University, Singapore 639798, Singapore
- Department of Psychology and Cognitive Science, University of Trento, 38068 Rovereto, Italy
- Correspondence: or
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50
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Wang M, Niu H, Liu L. Intergenerational Transmission of Corporal Punishment: The Independent and Interactive Moderating Role of Children's Negative Affectivity and Effortful Control. JOURNAL OF INTERPERSONAL VIOLENCE 2021; 36:NP4588-NP4610. [PMID: 30132715 DOI: 10.1177/0886260518794513] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 06/08/2023]
Abstract
The present study examined the independent and interactive moderating effects of children's negative affectivity (NA) and effortful control (EC) on the relations between parental childhood history of corporal punishment (CP) and their current use of CP. A total of 634 Chinese father-mother dyads with preschoolers (M age = 4.69 years, 53.8% boys) reported on their experience of CP in childhood, their current use of CP toward children, and their children's NA and EC. For both mothers and fathers, hierarchical regression analyses revealed that children's NA and EC independently and interactively moderated the relations between parental childhood history of CP and their current use of CP. Specifically, high NA intensified but high EC weakened the relations between parental childhood history of CP and their current use of CP. Moreover, high EC also weakened the intensifying effect of NA, with the intergenerational stability of CP being weakest and even disrupted when children were at low NA and high EC meanwhile. Findings from the present study highlight the importance of considering how the child factor may influence the intergenerational transmission of CP.
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Affiliation(s)
| | - Hua Niu
- Shandong Normal University, Jinan, P. R. China
| | - Li Liu
- Shandong Normal University, Jinan, P. R. China
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