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Urbina-Garcia A. Parents' wellbeing: perceptions of happiness and challenges in parenthood in Latin America. Int J Qual Stud Health Well-being 2025; 20:2454518. [PMID: 39833989 PMCID: PMC11753012 DOI: 10.1080/17482631.2025.2454518] [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] [Received: 08/02/2024] [Accepted: 01/08/2025] [Indexed: 01/22/2025] Open
Abstract
INTRODUCTION Traditional research on parenthood and wellbeing often employs a positivist perspective and focuses on non-LA samples -limiting our knowledge and understanding of the influence of cultural components such as Machismo and Marianismo, have in parents' wellbeing. This study explored how Latin American (LA) parents' wellbeing is influenced by parenthood in a culture strongly influenced by such gender-based perspectives. METHODS An interpretative perspective was employed to qualitatively explore fifteen LA parents' lived experiences and data were analysed via Thematic Analysis. The American Psychological Association's Journal Article Reporting Standards for Qualitative Research (JARS-Qual), was followed to compile this paper. RESULTS Results showed that socio-economic factors such as crime, violence, and economic inequality, negatively influence parents' wellbeing -emotions experienced and life satisfaction. DISCUSSION Parents find joy in sharing own personal experiences with their children and passing on gender-based models. However, parents perceive family pressure as a "burden" when expected to follow principles of Machismo/Marianismo. Similar to Asian, but unlike European parents, LA parents experience a mixture of positive and negative emotions whilst parenting -shaped by Machismo and Marianismo. This study makes a unique contribution by uncovering the unique influence of LA socio-economic challenges and cultural impositions and expectations and its influence on parental wellbeing.
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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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Hayse B, A Stearns M, Mazurek MO, Curtis AF, Nair N, Chan WS, Munoz M, D McGovney K, Beversdorf DQ, Golzy M, A Sohl K, Ner ZH, Davis BE, Takahashi N, McCrae CS. Exploratory analyses of sleep intraindividual variability and fatigue in parents of children on the autism spectrum. AUTISM : THE INTERNATIONAL JOURNAL OF RESEARCH AND PRACTICE 2025; 29:958-974. [PMID: 39533160 DOI: 10.1177/13623613241292691] [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] [Indexed: 11/16/2024]
Abstract
Fatigue is associated with numerous harmful physical and mental health outcomes. Despite the established relationship between sleep and fatigue, research examining sleep variability within a person (i.e. intraindividual variability; IIV) and fatigue is limited. In addition, the associations between child and parent sleep regarding parent fatigue have not been explicitly explored, which could be relevant for parents of autistic children with increased sleep disturbance likelihood. The current study used two weeks of objective sleep (actigraphy) and subjective fatigue data from 81 parents and their children to explore associations among child sleep IIV, parent sleep IIV, and parent average daily fatigue, including evaluating evidence for mediation. Sleep IIV was estimated using a validated Bayesian model. Linear regression analyses indicated that greater parent total sleep time IIV predicted significantly higher fatigue levels. Child sleep IIV was unrelated to parent sleep IIV and fatigue, unsupportive of hypothesized mediation. Similarly, post hoc analyses examining child sleep averages, parent total sleep time IIV, and average parent fatigue were insignificant. Findings cautiously support the uniqueness of total sleep time IIV within parental sleep's relationship with fatigue, independent of child sleep. Objective sleep IIV should continue to be examined in addition to average levels.Lay abstractFatigue is associated with numerous harmful physical and mental health outcomes. Despite research indicating a relationship between fatigue and sleep, there has been a limited focus on how the variability of a person's sleep may be associated with fatigue. In addition, previous studies have not explicitly explored relationships among child sleep, parent sleep, and parent fatigue. Increasing knowledge about this area of research could be particularly relevant for families with autistic children with an increased likelihood of sleep disturbances. The current study used two weeks of objective sleep (actigraphy) data and subjective ratings of parent fatigue from 81 parents and their autistic children to examine associations among child and parent within-person sleep variability regarding average parent fatigue levels. Evidence was assessed for the role of parent sleep variability in hypothesized connections between child sleep variability and parent fatigue. We found that only greater variability in parents' total sleep time was associated with higher levels of parents' average daily fatigue rating over the two weeks. Child sleep variability was not significantly associated with parent sleep variability or average daily fatigue. In addition, average levels of child sleep were unrelated to parent total sleep time variability and fatigue. Although cautious interpretation is required, findings support the idea that variability in total sleep time may be a unique aspect of parental sleep's association with fatigue, independent of child sleep. In addition, sleep variability could be important to consider when examining sleep in addition to average levels of parameters like total sleep time.
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Dahlberg A, Baric VB, Sampaio F, Fängström K. The effect and cost-effectiveness of a group-based parenting intervention for parents of preschool children with subclinical neurodevelopmental disorders and mental health problems: protocol for a multiple-baseline single-case experimental design (SCED) with a pre-, post and follow-up. BMC Psychol 2025; 13:309. [PMID: 40148911 PMCID: PMC11951784 DOI: 10.1186/s40359-025-02618-y] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/28/2025] [Accepted: 03/17/2025] [Indexed: 03/29/2025] Open
Abstract
BACKGROUND Young children with subclinical neurodevelopmental disorders (NDDs) and concurrent emotional and behavioral problems (EBP) are at significant risk of negative short- and long-term outcomes. Although early parenting support interventions are recommended and requested, there is a lack of interventions specifically designed for this group and adapted to the Swedish context. Based on this gap, a parenting support intervention for parents with children aged 2-6 years with subclinical NDDs and EBP has been co-created with clinicians and parents. The project described in this study protocol aims to evaluate the effectiveness and cost-effectiveness of this new group-based parenting intervention. METHODS The project uses a multiple-baseline single-case experimental design (SCED) with pre-post measures and a 3-month follow-up. The intervention is provided to families with children who are referred to child health psychologists at the child pediatric outpatient clinic in Uppsala Region, Sweden. Outcomes will include child EBP and parent self-efficacy, stress, well-being, and quality of life, as well as costs for the intervention, health care use, and QALYs. DISCUSSION The project could lead to improved mental health in both children and parents through participation in the group-based parenting intervention. The study design, with longitudinal data from both children and/or their parents, will provide valuable insights into the trajectories of mental health and well-being within this group. In addition, the inclusion of young children as informants will provide important information about their experiences. Furthermore, the use of pre-, post- and follow-up questionnaires will allow reliable and clinically significant changes to be assessed and our findings to be compared with randomized trials in similar populations. The results of this project will be relevant to children with subclinical NDDs and their parents, as well as to health care organizations and the scientific community. The intervention is well adapted to the end users and the clinical context, as it has been co-created with clinicians and parents. TRIAL REGISTRATION ISRCTN10835479 https://doi.org/10.1186/ISRCTN10835479 , date of registration 2024-10-08.
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Affiliation(s)
- Anton Dahlberg
- Child Health and Parenting (CHAP), Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden
- Akademiska Children's Hospital, Uppsala University Hospital, Uppsala, Sweden
| | - Vedrana Bolic Baric
- Department of Health, Medicine and Caring Sciences, Linköping University, Linköping, Sweden
| | - Filipa Sampaio
- Child Health and Parenting (CHAP), Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden
| | - Karin Fängström
- Child Health and Parenting (CHAP), Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden.
- Akademiska Children's Hospital, Uppsala University Hospital, Uppsala, Sweden.
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Viragova M, Falconer S, Chew A, Edwards AD, Dazzan P, Nosarti C. Environmental variables influence the relationship between maternal depressive symptoms and toddlers' neurocognitive and affective outcomes. J Affect Disord 2025; 372:512-522. [PMID: 39667706 DOI: 10.1016/j.jad.2024.12.035] [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] [Received: 06/19/2024] [Revised: 12/04/2024] [Accepted: 12/07/2024] [Indexed: 12/14/2024]
Abstract
Motherhood is often associated with joy, but it can pose significant challenges, and in some instances lead to perinatal mental health problems. Maternal depressive symptoms can hinder a mother's ability to attune to her infant's needs, potentially affecting caregiving quality and emotional support. This study examines how parenting style and a cognitively stimulating home environment (i.e., individual level) and relative social deprivation (i.e., area level) contribute to the relationship between maternal depressive symptoms and offspring's neurocognitive and affective outcomes at 18 months. Participants were 479 mothers and children recruited as part of the Developing Human Connectome Project. Maternal postnatal depressive symptoms were assessed at term with the Edinburgh Postnatal Depression Scale. At a median corrected age of 18.4 months (range 17.3-24.3) children's outcomes were evaluated with the Bayley Scales of Infant and Toddler Development, Third Edition, the parent-rated Child Behaviour Checklist 1½ - 5 and the Early Childhood Behaviour Questionnaire. The Parenting Scale measured dysfunctional parenting in discipline situations; the Cognitively Stimulating Parenting Scale assessed experiences promoting cognitive stimulation in the home. Family socioeconomic status was evaluated using the Index of Multiple Deprivation. Toddler's outcomes were summarised into latent dimensions labelled 'neurocognitive' and 'affective'. Results from bootstrapped-based mediation analysis showed that a permissive parenting style and a less cognitively stimulating home environment modified the relationship between depressive symptoms and toddlers' neurocognitive outcomes. However, other factors, such as relative social deprivation and parental over-reactivity, did not alter this. Results also showed that an over-reactive parenting style modified the relationship between maternal depressive symptoms and toddlers' reduced capacity for effective emotional regulation, while relative social deprivation, permissive parenting and a cognitively stimulating home environment did not. These findings highlight the importance of understanding how environmental factors interact with parenting styles, and influence child development. The study emphasizes the need for interventions that create stable and supportive environments, mitigating the impact of suboptimal parenting on children's developmental outcomes.
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Affiliation(s)
- M Viragova
- Department of Child and Adolescent Psychiatry, Institute of Psychiatry, Psychology and Neuroscience, Kings College London, United Kingdom.
| | - S Falconer
- Centre for the Developing Brain, School of Biomedical Engineering and Imaging Sciences, King's College London, United Kingdom
| | - A Chew
- Centre for the Developing Brain, School of Biomedical Engineering and Imaging Sciences, King's College London, United Kingdom
| | - A D Edwards
- Centre for the Developing Brain, School of Biomedical Engineering and Imaging Sciences, King's College London, United Kingdom
| | - P Dazzan
- Department of Psychological Medicine, Institute of Psychiatry, Psychology and Neuroscience, Kings College London, United Kingdom
| | - C Nosarti
- Department of Child and Adolescent Psychiatry, Institute of Psychiatry, Psychology and Neuroscience, Kings College London, United Kingdom; Centre for the Developing Brain, School of Biomedical Engineering and Imaging Sciences, King's College London, United Kingdom
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Baransi N, Scharf M. Can a Short-Term Intervention Promote Growth Among Parents of Children with ASD? J Autism Dev Disord 2025:10.1007/s10803-025-06744-9. [PMID: 39984783 DOI: 10.1007/s10803-025-06744-9] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 01/28/2025] [Indexed: 02/23/2025]
Abstract
The present study investigated the effects of a short-term synergic growth mindset intervention towards abilities and towards stress on reducing parental stress and promoting stress-related growth (SRG) among Arab parents of children diagnosed with Autistic Spectrum Disorder (ASD). One hundred and seven parents (70 mothers, 37 fathers) of male children with ASD, completed several questionnaires, including a demographic questionnaire; the Childhood Autism Rating Scale, the Parenting Stress Index-Short Form, the revised Stress- Related Growth Scale, The Implicit Self-Theories Scale, and the Stress Mindset Scale. Seventy- two parents were randomly assigned to an "intervention group", and 35 to a comparison group. Members of the intervention group participated in a short synergic growth mindset intervention, created especially for this research. Six months after the intervention, all participants re-completed the same questionnaires. The intervention significantly increased growth mindset and SRG and decreased parental stress. This study demonstrates the effectiveness of a short-term intervention in promoting growth mindsets, reducing parental stress, and fostering SRG among parents of children with a chronic disorder. These findings are particularly important since many parents of children with chronic disorders often exhibit fixed mindset patterns due to their children's slow progress in various developmental domains.
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Affiliation(s)
- Nagham Baransi
- School of Therapy, Counseling and Human Development, University of Haifa, 199 Aba Khoushy Ave, Mount Carmel, 3498838, Haifa, Israel.
| | - Miri Scharf
- School of Therapy, Counseling and Human Development, University of Haifa, 199 Aba Khoushy Ave, Mount Carmel, 3498838, Haifa, Israel
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Zhang L, Zhang Y, Chen Y, Sun J. Factors influencing parents' educational anxiety of primary and secondary school students: evidence from parents in China. BMC Public Health 2025; 25:65. [PMID: 39773161 PMCID: PMC11706096 DOI: 10.1186/s12889-024-21197-y] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/02/2024] [Accepted: 12/24/2024] [Indexed: 01/11/2025] Open
Abstract
BACKGROUND Current research has focused on exploring the sources of parents' anxiety about children's education (PAE), and we continue in this direction by exploring the factors influencing parental educational anxiety in primary and secondary school students and the interactions among them. METHODS Parental Educational Anxiety Measurement Questionnaire was used to measure the level of PEA. Pearson correlation coefficient analysis was used to examine the correlation between the level of PAE and the demographic variables. The method of multiple stepwise regression analysis was used to explore the demographic factors correlated with PAE. Two-way interactions in moderated multiple regression to examine the moderating effects of educational attainment on monthly household mortgage payments and PAE. RESULTS Our results indicate that there were statistical differences among education level, average monthly household income, child's stage of learning and monthly household mortgage payments; PEA were negatively correlated with education level and average monthly household income, and positively correlated with monthly cost of educational inputs. The results of multiple regression analysis showed that education level, average monthly household income, monthly household mortgage payment, and monthly cost of educational inputs were direct influences on PEA. Education level has a significant moderating effect on the monthly mortgage payment and PEA. CONCLUSION Education level, average monthly household income, monthly household mortgage payment, and monthly cost of educational inputs were direct influencing factor of PEA.
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Affiliation(s)
- Liping Zhang
- School of Marxism, Anhui Medical University, Hefei, Anhui, 230032, China
| | - Yuqing Zhang
- School of Health Care Management, Anhui Medical University, Hefei, 230032, China
| | - Yao Chen
- , Hefei No. 42 Middle School, Hefei, Anhui, 230071, China
| | - Jiangjie Sun
- School of Health Care Management, Anhui Medical University, Hefei, 230032, China.
- School of Management, Hefei University of Technology, Hefei, Anhui, 230039, China.
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Adams RL, Al-Mayahi S, Mara MD. Exploring the oral health status of children living with hypoxic ischemic encephalopathy (HIE): A caregiver described self-report. SPECIAL CARE IN DENTISTRY 2025; 45:e13081. [PMID: 39520237 DOI: 10.1111/scd.13081] [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: 08/21/2024] [Accepted: 10/25/2024] [Indexed: 11/16/2024]
Abstract
INTRODUCTION Hypoxic Ischemic Encephalopathy (HIE) is a birth complication due to loss of oxygen flow, resulting in a wide range of physical and cognitive differences often requiring support from multidisciplinary healthcare teams. Despite this population's increased need, little is known about their oral health status and the role of the dentist as a member of the care team. METHODS A 32-item oral health questionnaire was shared to 8700 members within the patient advocacy non-profit, Hope for HIE's, Facebook group. The survey assessed caregiver-reported oral health status and facilitators and barriers to receiving dental care. RESULTS Two hundred sixty-two individuals responded to the survey. The majority were white (90%, 177/196) parents of children with HIE (99%, 259/262) that lived in the U.S. (76%, 148/195) and cared for children under 3 (42%, 106/251). 36% (85/236) reported cavity experience, 81% (180/223) reported visiting the dentist for a dental check-up, however, 58% (147/255) considered the dentist to be a member of their child's care team. CONCLUSION Children diagnosed with HIE likely experience similar oral health status as their peers, however, qualitative developmental work is necessary to assess facilitators and barriers to receiving dental care, and how to integrate the dentist into the care team.
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Affiliation(s)
- Rachyl L Adams
- Department of General Dentistry, Boston University Henry M. Goldman School of Dental Medicine, Boston, USA
| | - Sarah Al-Mayahi
- Department of General Dentistry, Boston University Henry M. Goldman School of Dental Medicine, Boston, USA
| | - Mathew D Mara
- Department of General Dentistry, Boston University Henry M. Goldman School of Dental Medicine, Boston, USA
- Office of Global and Population Health, Boston University Henry M. Goldman School of Dental Medicine, Boston, USA
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Bragg MG, Vesey O, Chavarro JE, Hart JE, Tabb LP, Weisskopf MG, Croen LA, Fallin D, Hertz-Picciotto I, Newschaffer C, Schmidt RJ, Volk H, Lyall K. Characterizing self-reported physical activity before and during a subsequent pregnancy among parents in a familial autism cohort. AUTISM : THE INTERNATIONAL JOURNAL OF RESEARCH AND PRACTICE 2025; 29:143-154. [PMID: 39235189 PMCID: PMC11659057 DOI: 10.1177/13623613241273034] [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 Parents of autistic children may have limited time and resources to participate in physical activity, a key aspect of health. Previous studies have been small and included mostly mothers, rather than fathers. No studies have examined physical activity in these parents during another pregnancy, when physical activity is especially important for maternal and fetal health. We aimed to fill this gap by examining physical activity levels among mothers and fathers caring for an autistic child before and during a subsequent pregnancy. We used data from a study which followed pregnant individuals who already had a child with autism. We asked mothers and fathers to report their levels of moderate and vigorous physical activity. We found that mothers and fathers of autistic children reported lower physical activity levels than the national average and were unlikely to meet Physical Activity Guidelines for Americans. Pregnant mothers were the least likely to participate in physical activity, particularly if their autistic child scored highly on a measure of autistic traits. Given that parental physical activity has benefits for parents and children, family-based interventions may be needed to help support parents' physical activity levels.
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Affiliation(s)
- Megan G Bragg
- AJ Drexel Autism Institute, Drexel University, Philadelphia, PA, USA
| | - Olivia Vesey
- AJ Drexel Autism Institute, Drexel University, Philadelphia, PA, USA
| | - Jorge E. Chavarro
- Department of Nutrition, Harvard T.H. Chan School of Public Health, Boston, MA, USA
| | - Jaime E. Hart
- Channing Division of Network Medicine, Department of Medicine, Brigham and Women’s Hospital and Harvard Medical School, Boston, MA, USA
- Department of Environmental Health, Harvard T.H. Chan School of Public Health, Boston, MA, USA
| | - Loni Philip Tabb
- Department of Epidemiology and Biostatistics, Dornsife School of Public Health, Drexel University, Philadelphia, PA, USA
| | - Marc G. Weisskopf
- Department of Environmental Health, Harvard T.H. Chan School of Public Health, Boston, MA, USA
| | - Lisa A. Croen
- Division of Research, Kaiser Permanente Northern California, Oakland, CA, USA
| | - Daniele Fallin
- Department of Mental Health, Johns Hopkins Bloomberg School of Public Health, Johns Hopkins University, Baltimore, MD, USA
| | - Irva Hertz-Picciotto
- Department of Public Health Sciences, University of California Davis, Davis, CA, USA
| | - Craig Newschaffer
- College of Health and Human Development, Pennsylvania State University, State College, PA, USA
| | - Rebecca J. Schmidt
- Department of Public Health Sciences, University of California Davis, Davis, CA, USA
| | - Heather Volk
- Department of Mental Health, Johns Hopkins Bloomberg School of Public Health, Johns Hopkins University, Baltimore, MD, USA
| | - Kristen Lyall
- AJ Drexel Autism Institute, Drexel University, Philadelphia, PA, USA
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Erwin J, Neill S, Vassallo T, Vassallo I, Witton R, Paisi M. Factors Influencing the Oral Health Behaviours of Autistic Children and Young People: A Qualitative Study. Health Expect 2024; 27:e70130. [PMID: 39690875 DOI: 10.1111/hex.70130] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/20/2024] [Revised: 09/27/2024] [Accepted: 11/27/2024] [Indexed: 12/19/2024] Open
Abstract
BACKGROUND Poor oral health (OH) in childhood can cause pain, affect quality of life and significantly impact adult OH. Autistic children and young people (CYP) experience inequalities in OH and are at higher risk of cavities and gum disease than neurotypical CYP. OBJECTIVE To provide evidence and insights into the factors affecting the OH behaviours of ACYP from the perspective of ACYP, their parents/carers and Dental Health Professionals (DHPs). METHOD Semi-structured online or face-to-face interviews were conducted with CYP, parents/carers and DHPs in Southwest England. RESULTS Nineteen ACYP (aged 5-18 years old), 20 parents/carers and 16 DHPs were interviewed. The themes identified were as follows: Sensory sensitivities and diet; Toothbrushing 'battles'; Coping with the stresses of daily life in a neurotypical world; Awareness of autism and understanding of challenges to good OH; The impact on parents of trying to care their child's OH; CYP and parent/carers difficulties in obtaining OH support; What 'good support' looks like. CONCLUSIONS An increased awareness among DHPs, health and social care professionals of autism and the challenges to OH that CYP face is needed. Providing early support, strategies and resources to CYP and their parents/carers has the potential to help establish positive OH behaviours. PUBLIC CONTRIBUTION The research team worked closely with members of the autistic community on this project. The methods used in this project were developed together with a research advisory group which included four ACYP (aged 9-17) and their parents. The team also worked with members of a youth club for ACYP aged 10-17 years old. All research documents and materials were co-produced. Members of the advisory group (T.V. and I.V.) contributed to the interpretation of the research findings and the writing of this manuscript.
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Affiliation(s)
- Jo Erwin
- Peninsula Dental School, University of Plymouth, Plymouth, UK
| | - Sarah Neill
- School of Nursing and Midwifery, University of Plymouth, Plymouth, UK
| | - Tara Vassallo
- Plymouth Institute of Education, University of Plymouth, Plymouth, UK
- National Autistic Society - Plymouth & District Branch, Plymouth, UK
| | - Isaac Vassallo
- School of Engineering, Computing and Mathematics, University of Plymouth, Plymouth, UK
| | - Rob Witton
- Peninsula Dental School, University of Plymouth, Plymouth, UK
- Peninsula Dental Social Enterprise, Plymouth, UK
| | - Martha Paisi
- Peninsula Dental School, University of Plymouth, Plymouth, UK
- School of Nursing and Midwifery, University of Plymouth, Plymouth, UK
- Peninsula Dental Social Enterprise, Plymouth, UK
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Gentles SJ, McLaughlin J, Schneider MA. Stress among caregivers of autistic children: Conceptual analysis and verification using two qualitative datasets. PLoS One 2024; 19:e0312391. [PMID: 39436902 PMCID: PMC11495581 DOI: 10.1371/journal.pone.0312391] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/16/2024] [Accepted: 10/07/2024] [Indexed: 10/25/2024] Open
Abstract
In this two-part study, we first present the results of a sub-analysis of empirical data from a large grounded theory study of caregivers' (parents) navigating autism-related care. The purpose of this analysis was to develop a conceptual overview of stress and crisis. We then describe the results and feasibility of using a framework analysis approach to verify and extend this conceptual analysis using qualitative survey data from a comparable population. Finally, we compare the conceptual findings to existing stress theory. While the grounded theory analysis was not aimed at producing a full theory of stress, multiple key elements of the resulting conceptual overview are consistent with prior stress theory. A potentially novel contribution is the conceptualization of social-psychological stress as an evolving process metaphorically analogous to a physiological model of stress that accurately fitted caregivers' experience. Specifically, it accounts for early empowering consequences of stress in terms of caregivers' motivation and capacity for action, the progressive destructive consequences in terms of its effects on caregivers' emotional and even physical well-being, and the evolving and nonlinear process of stress over the life course. The definition for crisis, meanwhile, acknowledges that different systems can be in crisis from the caregiver's perspective, and that it can be triggered by progressive buildups of stress and not just acute major triggering events. The insights from this analysis have implications for improving support professionals' sensitivity to the empirical caregiver-perspective realities of stress at a conceptual level, and for improving assessment of crisis specifically in this population. The framework analysis exercise demonstrated some utility of the qualitative survey data for verifying and extending this theoretical analysis, despite the limitations compared to in-depth interview data discussed. This has implications for improving the utilization of qualitative data often collected in survey research.
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Affiliation(s)
| | - Janet McLaughlin
- Health Studies, Wilfrid Laurier University, Waterloo, Ontario, Canada
| | - Margaret A. Schneider
- Department of Kinesiology & Physical Education, Wilfrid Laurier University, Waterloo, Ontario, Canada
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Tong J, Chen X, Wang B, Wang T, Wang X, Ma S, Shi D, Wang X, Yan D. Moderating effects of general self-efficacy on courtesy stigma and anxiety and depressive symptoms of parents of children with autism spectrum disorder. Front Psychiatry 2024; 15:1454004. [PMID: 39421066 PMCID: PMC11484264 DOI: 10.3389/fpsyt.2024.1454004] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/24/2024] [Accepted: 09/13/2024] [Indexed: 10/19/2024] Open
Abstract
Background Stigma, anxiety and depressive symptoms are highly prevalent in parents of children with autism spectrum disorder (ASD) and may have a detrimental impact on the rehabilitation and treatment of children with ASD, ultimately leading to more behavioral issues and higher rates of disability. Therefore, the purpose of this study was to identify the association between general self-efficacy, courtesy stigma, and anxiety and depressive symptoms, and to further discuss whether general self-efficacy moderated the association between courtesy stigma and anxiety and depressive symptoms in parents of children with ASD. Methods A total of 409 parents of children with ASD from Lianyungang, Jiangsu Province, Eastern China participated in a cross-sectional survey. A structured questionnaire was used to collect sociodemographic characteristics, courtesy stigma, general self-efficacy, anxiety symptoms, and depressive symptoms. Hierarchical multiple regression was used to assess the associations of courtesy stigma, general self-efficacy and courtesy stigma × general self-efficacy interaction with anxiety and depressive symptoms. Simple slope analysis was used to visualize the interaction. Results The courtesy stigma of parents of children with ASD was positively correlated with anxiety (B = 0.374, P < 0.001) and depressive symptoms (B = 0.366, P < 0.001). General self-efficacy was negatively correlated with anxiety (B = -0.200, P < 0.001) and depressive symptoms (B = -0.210, P < 0.001). The association between courtesy stigma and anxiety symptoms was different in the high (1 standard deviation (SD) above the mean, b = 0.258, standard error (SE) = 0.056, t = 4.567, P < 0.001) and low (1 SD below the mean, b = 0.470, SE = 0.053, t = 8.870, P < 0.001) groups of general self-efficacy. In addition, the association between courtesy stigma and depressive symptoms was also different in the high (1 SD above the mean, b = 0.241, SE = 0.056, t = 4.268, P < 0.001) and low (1 SD below the mean, b = 0.469, SE = 0.053, t = 8.844, P < 0.001) groups of general self-efficacy. Conclusions General self-efficacy could moderate the impact of courtesy stigma on anxiety and depressive symptoms. Therefore, among parents of children with ASD who experienced high courtesy stigma, enhancing general self-efficacy could be an effective strategy to reduce anxiety and depressive symptoms in this population.
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Affiliation(s)
- Jiao Tong
- Lianyungang Maternal and Child Health Hospital Affiliated to Kangda College of Nanjing Medical University, Lianyungang, China
| | - Xu Chen
- Lianyungang Maternal and Child Health Hospital Affiliated to Kangda College of Nanjing Medical University, Lianyungang, China
| | - Bin Wang
- The First Affiliated Hospital of Dalian Medical University, Dalian, China
| | - Tao Wang
- Lianyungang Maternal and Child Health Hospital Affiliated to Kangda College of Nanjing Medical University, Lianyungang, China
| | - Xue Wang
- Lianyungang Maternal and Child Health Hospital Affiliated to Kangda College of Nanjing Medical University, Lianyungang, China
| | - Shan Ma
- Lianyungang Maternal and Child Health Hospital Affiliated to Kangda College of Nanjing Medical University, Lianyungang, China
| | - Dongdong Shi
- Lianyungang Maternal and Child Health Hospital Affiliated to Kangda College of Nanjing Medical University, Lianyungang, China
| | - Xin Wang
- Lianyungang Maternal and Child Health Hospital Affiliated to Kangda College of Nanjing Medical University, Lianyungang, China
| | - Dongmei Yan
- Lianyungang Maternal and Child Health Hospital Affiliated to Kangda College of Nanjing Medical University, Lianyungang, China
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Brennan J, Ward OF, Tomeny TS, Davis TE. A Systematic Review of Parental Self-Efficacy in Parents of Autistic Children. Clin Child Fam Psychol Rev 2024; 27:878-905. [PMID: 39160428 DOI: 10.1007/s10567-024-00495-2] [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] [Accepted: 08/04/2024] [Indexed: 08/21/2024]
Abstract
Parental self-efficacy (PSE) assesses a parent's expectations and beliefs about their ability to effectively parent their child. PSE has implications for a parent's well-being, parenting practices, mental health, the parent-child relationship, and child adjustment. While PSE has been extensively examined within the broader parenting literature, the examination of PSE specifically for parents of autistic children has gained increasing attention in recent years. The following systematic review aimed to investigate the role of PSE for parents of autistic children by examining variables that predict PSE or are predicted by PSE in relation to how they align with the broader parenting literature and are unique to autism. Utilizing PRISMA guidelines, peer-reviewed articles were included if (a) participants included caregivers of autistic children, (b) at least one quantitative outcome measure of PSE was utilized, and (c) the role of PSE was examined as an outcome, predictor, or variable in an explanatory model. A total of 53 studies were included in the review and the role of PSE was examined regarding family (e.g., parental characteristics, parent stress, well-being, and support) and child factors (e.g., autism symptomology, problem behaviors, interventions). Several themes emerged including a positive relationship between PSE and support, and a negative relationship between PSE and parenting stress, parent mental health outcomes (e.g., anxiety, depression), and autism symptomology. Findings were compared to the broader parenting and PSE literature to examine how increased considerations and challenges (e.g., child problem behaviors, social impairment, and caregiver strain) associated with raising an autistic child might impact PSE.
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Affiliation(s)
- Justine Brennan
- Department of Psychology, The University of Alabama, 348 Gordon Palmer Hall, Box 870348, Tuscaloosa, AL, 35487, USA.
| | - Olivia F Ward
- Department of Psychology, The University of Alabama, 348 Gordon Palmer Hall, Box 870348, Tuscaloosa, AL, 35487, USA
| | - Theodore S Tomeny
- Department of Psychology, The University of Alabama, 348 Gordon Palmer Hall, Box 870348, Tuscaloosa, AL, 35487, USA
| | - Thompson E Davis
- Department of Psychology, The University of Alabama, 348 Gordon Palmer Hall, Box 870348, Tuscaloosa, AL, 35487, USA
- Department of Psychology, Louisiana State University, Baton Rouge, LA, USA
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Gülbetekin E, Kardaş Özdemir F, Aşut G. The mediator role of parenting stress in the effect of stigmatization on burnout in parents of children with autism: A structural equality model. J Pediatr Nurs 2024; 78:e323-e329. [PMID: 39054111 DOI: 10.1016/j.pedn.2024.07.021] [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] [Received: 05/03/2024] [Revised: 07/13/2024] [Accepted: 07/21/2024] [Indexed: 07/27/2024]
Abstract
PURPOSE The purpose of this study was to report on the mediator role of parenting stress in the effect of stigmatization on burnout in parents of children with autism. DESIGN AND METHODS A descriptive and correlational research design was used in this study. The sample consisted of 146 parents who had children diagnosed with autism spectrum disorder and volunteered to participate in the study. A "Personal Information Form", the "Parents' Internalized Stigma of Mental Illness Scale", the "Parenting Stress Scale", and the "Parental Burnout Assessment" were used for data collection. RESULTS In the study, it was observed that the feeling of stigmatization increased as the education level increased and that variables such as the ages of the parent and the child and an increase in the number of children requiring care also affected the feeling of stigmatization. Parenting stress was found to have a "partial mediator" role in the effect of stigmatization on parental burnout. CONCLUSION Our findings emphasized the heterogeneous correlation between stigmatization, burnout, and stress levels of parents of children with autism. PRACTICE IMPLICATIONS This study has key implications for pediatric nursing practices. Pediatric nurses can educate the community about autism, what issues should be considered, and how to support parents. Furthermore, nurses can introduce parents who have children with autism to each other and direct them to parent-child activities that can regulate their moods.
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Affiliation(s)
- Eda Gülbetekin
- Igdır University Faculty of Health Sciences, Department of Pediatric Nursing, Igdır, Turkey.
| | - Funda Kardaş Özdemir
- Kafkas University Faculty of Health Sciences, Department of Pediatric Nursing, Kars, Turkey
| | - Gülçin Aşut
- Igdır University Health Services Vocational School, Igdır, Turkey
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15
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Trew S. Made to feel different: Families perspectives on external responses to autism and the impacts on family well-being and relationships. AUTISM : THE INTERNATIONAL JOURNAL OF RESEARCH AND PRACTICE 2024; 28:2120-2139. [PMID: 38240288 PMCID: PMC11301965 DOI: 10.1177/13623613231221684] [Citation(s) in RCA: 1] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 08/07/2024]
Abstract
LAY ABSTRACT The influence of the environment on different groups of people with disabilities has rarely been studied in the context of neurodevelopmental disabilities, such as autism, in adolescence. This study explored how external responses to autism affect the experiences, outcomes and family relationships of autistic adolescents and their family members, including siblings and parents. This study adds to the knowledge of factors that contribute to the social disadvantage and exclusion autistic adolescents and their families face in their communities. Interviews with 30 participants from families with an autistic adolescent show that external factors greatly impact the well-being of autistic adolescents and their families. The school environment, including sensory overload, bullying and negative interactions with teachers, was found to be a key factor that negatively influenced mental health and family relationships. The study also revealed that isolation and stigma are major concerns for families, indicating the importance of public awareness campaigns to increase understanding of autism. In addition, the lack of adequate support and services presented significant challenges for families. The study emphasises the importance of person-centred approaches to providing services, which involve including autistic individuals and their families in designing and delivering support.
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Rizzo A, Sorrenti L, Commendatore M, Mautone A, Caparello C, Maggio MG, Özaslan A, Karaman H, Yıldırım M, Filippello P. Caregivers of Children with Autism Spectrum Disorders: The Role of Guilt Sensitivity and Support. J Clin Med 2024; 13:4249. [PMID: 39064288 PMCID: PMC11278243 DOI: 10.3390/jcm13144249] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/17/2024] [Revised: 07/12/2024] [Accepted: 07/17/2024] [Indexed: 07/28/2024] Open
Abstract
Background/Objectives: Burden Syndrome, also known as Caregiver Syndrome, particularly affects those who serve in the role of informal caregiver in the presence of family members with conditions. The ABCX dual model examines the impact on the caregiver of the diagnosis of autism spectrum disorder (ASD) on the family. This model considers the severity of the stressor (A), the additional demands of life stress (aA), the family's internal resources (B), the family's external resources (bB), the family's assessment of the situation (C), coping strategies (cC), and outcome (X). The purpose of the present study is to investigate the relationships between resilience, guilt, and burden of care in caregivers of children with ASD. Methods: Various assessment instruments were used, including the "Caregiver Burden Inventory" to measure burden, the "Brief Resilience Scale" to assess resilience, the "Guilt Sensitivity Questionnaire" to examine guilt sensitivity, and the "DA.L.I.A." to collect information on parent and child characteristics. A total of 80 parents/caregivers participated in the research, including 53 women (Age M = 41.72; SD = 7.8) and 27 men (Age M = 43.35; SD = 6.29). Results: The findings indicate that individuals' resilience to stressful events correlates negatively with burden, a developmental subtype. However, guilt seems not to play a significant role in the overall perception of burden. In contrast, it was found that the use of informal supports is associated with higher levels of guilt and emotional burden, whereas the use of formal supports is correlated with higher emotional burden, but not higher perceptions of guilt. Conclusions: This study provides important information about the support needed by caregivers and suggests how to address emotional burdens to prevent burnout and support families with children with ASD.
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Affiliation(s)
- Amelia Rizzo
- Department of Clinical and Experimental Medicine, University of Messina, 98122 Messina, Italy; (L.S.); (M.C.); (A.M.); (P.F.)
- Department of Cognitive Sciences, Pedagogical Psychological and Cultural Studies, University of Messina, 98122 Messina, Italy
| | - Luana Sorrenti
- Department of Clinical and Experimental Medicine, University of Messina, 98122 Messina, Italy; (L.S.); (M.C.); (A.M.); (P.F.)
| | - Martina Commendatore
- Department of Clinical and Experimental Medicine, University of Messina, 98122 Messina, Italy; (L.S.); (M.C.); (A.M.); (P.F.)
| | - Aurora Mautone
- Department of Clinical and Experimental Medicine, University of Messina, 98122 Messina, Italy; (L.S.); (M.C.); (A.M.); (P.F.)
| | - Concettina Caparello
- Department of Health Sciences, University Magna Graecia of Catanzaro, 88100 Catanzaro, Italy;
| | | | - Ahmet Özaslan
- Child and Adolescent Psychiatry Department, Gazi University Medical Faculty, 06560 Ankara, Turkey;
- Child Protection Research and Application Center, Gazi University, 06560 Ankara, Turkey
| | - Hakan Karaman
- Department of Social Work, Faculty of Health Sciences, İstanbul Üniversitesi—Cerrahpaşa, 34320 İstanbul, Turkey;
| | - Murat Yıldırım
- Department of Psychology, Faculty of Science and Letters, Ağrı İbrahim Çeçen University, 04100 Ağrı, Turkey;
- Department of Social and Educational Sciences, Lebanese American University, Beirut 03797751, Lebanon
| | - Pina Filippello
- Department of Clinical and Experimental Medicine, University of Messina, 98122 Messina, Italy; (L.S.); (M.C.); (A.M.); (P.F.)
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Johnson NL, Bekhet AK, Zint E, Wang J, Pena S, Van Hecke A, Garnier-Villarreal M, Ng A. Correlations of Physical and Psychological Health in Parents of Individuals With Autism Spectrum Disorder. West J Nurs Res 2024; 46:532-540. [PMID: 38752509 DOI: 10.1177/01939459241253221] [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] [Indexed: 06/16/2024]
Abstract
BACKGROUND Individuals with autism spectrum disorder (ASD) have social communication difficulties and restricted, repetitive, and/or sensory behaviors or interests. The prevalence of ASD is now 1 in 36 individuals. Parents of individuals with ASD face challenges that can affect their physical and psychological well-being. OBJECTIVE With the long-term goal to tailor an exercise program, the purpose of this study was 2-fold: (1) establish the baseline physical and mental health of parents of individuals with ASD and (2) estimate the relationship of physiologic variables with psychological variables of health for parents of individuals with ASD. METHODS This descriptive, cross-sectional study (N = 44) explored physical health measures and the correlation between physical and psychological health, using measures of anxiety, stress, parenting depression, and positive thinking for parents who care for individuals with ASD. RESULTS The common characteristics that these parents shared was high body fat and low physical activity. Body fat was negatively correlated to total step count (r = -0.428, P < .05), grip strength (r = -0.319, P < .5), and total distance walked in the week (r = -0.661, P < .01), and positively correlated to 5-times sit to stand (r = 0.337, P < .05). Low activity correlated to increased parenting stress of advocating for child's needs (r = -0.310, P = .043). CONCLUSIONS Understanding relationships between physical and psychological health informs effective interventions and support systems for parents. Parents need supports to be able to prioritize exercise. Future studies should include a larger sample to verify these effects.
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Affiliation(s)
| | | | - Emily Zint
- Physical Therapy, Marquette University, Milwaukee, WI, USA
| | - June Wang
- Physical Therapy, Marquette University, Milwaukee, WI, USA
| | - Sylvia Pena
- Nursing, Marquette University, Milwaukee, WI, USA
| | - Amy Van Hecke
- Psychology, Marquette University, Milwaukee, WI, USA
| | | | - Alexander Ng
- Physical Therapy, Marquette University, Milwaukee, WI, USA
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Chang Y, He B, DeMaranville J, Wongpakaran N, Wedding D, Wongpakaran T. Psychometric Properties of the Chinese Version of the Core Symptom Index: A Study among Chinese Parents of Children with Autistic Spectrum Disorders. Eur J Investig Health Psychol Educ 2024; 14:1902-1912. [PMID: 39056641 PMCID: PMC11276130 DOI: 10.3390/ejihpe14070126] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/26/2024] [Revised: 06/18/2024] [Accepted: 06/23/2024] [Indexed: 07/28/2024] Open
Abstract
(1) Background: Parents of children with autism spectrum disorders often experience psychological distress, which can affect the quality of childcare they provide. It is crucial to screen for psychiatric symptoms among these parents. The core symptom index (CSI) is a widely recognized tool used to assess general symptoms, including depression, anxiety, and somatic issues. It has proven validity and reliability across diverse Thai populations. Given the cultural similarities between Thai and Chinese populations, the CSI has been successfully implemented within the Chinese population. Nevertheless, it is crucial to research its validity and reliability in the general Chinese population. This study aimed to investigate the psychometric properties of the Chinese version of the CSI among parents of children with autism spectrum disorders using confirmatory factor analysis (CFA). (2) Methods: A total of 794 Chinese parents raising children with autism participated in this study. All completed the CSI, along with the social inhibition subscale of the Interpersonal Problems Inventory and the Couple Satisfaction Index. Factorial validity was assessed using CFA to determine how well the bifactor three-factor model fits the data. Various structural models were compared using model fit indices. Convergent and discriminant validity were examined by exploring correlations with the social inhibition subscale and the Couple Satisfaction Index. Invariance testing of the CSI was conducted across multiple groups based on gender, age, and education using CFA. The reliability of the CSI was evaluated using McDonald's omega coefficients. (3) Results: The bifactor model emerged as the best-fitting model for the data, suggesting that the total score of the CSI adequately represents overall psychiatric symptoms. The CSI exhibited significant correlations with the social inhibition subscale (r = 0.41, p < 0.01) and smaller correlation coefficients with the Couple Satisfaction Index (r = -0.16, p < 0.05), indicating both convergent and discriminant validity. The invariant test results support scalar invariance levels based on gender and age but only partial invariance for education. The Chinese version of the CSI demonstrated high consistency, with McDonald's omega coefficients ranging between 0.86 and 0.95. (4) Conclusions: The bifactor model of the Chinese version of the CSI is validated, making it a suitable tool for measuring depression, anxiety, and somatization symptoms among parent(s) of children with autism spectrum disorders. Further research on other Chinese populations is encouraged.
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Affiliation(s)
- Yu Chang
- Multidisciplinary and Interdisciplinary School (MIdS), Chiang Mai University, Chiang Mai 50200, Thailand; (Y.C.); (B.H.); (J.D.); (N.W.); (D.W.)
| | - Bijing He
- Multidisciplinary and Interdisciplinary School (MIdS), Chiang Mai University, Chiang Mai 50200, Thailand; (Y.C.); (B.H.); (J.D.); (N.W.); (D.W.)
| | - Justin DeMaranville
- Multidisciplinary and Interdisciplinary School (MIdS), Chiang Mai University, Chiang Mai 50200, Thailand; (Y.C.); (B.H.); (J.D.); (N.W.); (D.W.)
| | - Nahathai Wongpakaran
- Multidisciplinary and Interdisciplinary School (MIdS), Chiang Mai University, Chiang Mai 50200, Thailand; (Y.C.); (B.H.); (J.D.); (N.W.); (D.W.)
- Department of Psychiatry, Faculty of Medicine, Chiang Mai University, Chiang Mai 50200, Thailand
| | - Danny Wedding
- Multidisciplinary and Interdisciplinary School (MIdS), Chiang Mai University, Chiang Mai 50200, Thailand; (Y.C.); (B.H.); (J.D.); (N.W.); (D.W.)
- Department of Clinical and Humanistic Psychology, Saybrook University, Pasadena, CA 91103, USA
- Department of Psychology, University of Missouri-Saint Louis, St. Louis, MO 63121, USA
| | - Tinakon Wongpakaran
- Multidisciplinary and Interdisciplinary School (MIdS), Chiang Mai University, Chiang Mai 50200, Thailand; (Y.C.); (B.H.); (J.D.); (N.W.); (D.W.)
- Department of Psychiatry, Faculty of Medicine, Chiang Mai University, Chiang Mai 50200, Thailand
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Bailey C, Dalziel K, Jones R, Hiscock H, Devlin NJ, Peasgood T. The Validity of the EuroQol Health and Wellbeing Short Version (EQ-HWB-S) Instrument in Parents of Children With and Without Health Conditions. PHARMACOECONOMICS 2024; 42:163-179. [PMID: 38238605 PMCID: PMC11168993 DOI: 10.1007/s40273-024-01351-5] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Accepted: 01/02/2024] [Indexed: 06/13/2024]
Abstract
BACKGROUND The EuroQol Health and Wellbeing Short Version (EQ-HWB-S) instrument has been developed to measure the health and wellbeing of care-recipients and their caregivers for use in economic evaluation.The EQ-HWB-S has nine items, and pilot UK preference weights have now been developed. OBJECTIVE We aimed to investigate the validity of the instrument in parents of children with and without health conditions. METHODS EQ-HWB-S data were sourced from an Australian paediatric multi-instrument comparison study. We analysed the baseline characteristics and response distribution of the EQ-HWB-S items. Assessment of known-group validity was conducted for EQ-HWB-S items, level sum-scores and preference-weighted scores, including partial effects. Known-group analyses included three child health variables and where caregivers reported coronavirus disease 2019 (COVID-19) had impacted their wellbeing. We included analyses across gender, controlled for child and parent demographic variables, and compared scores across child health conditions. RESULTS Item responses were distributed as expected, with higher skew for mobility and activities. Parents experienced high levels of exhaustion. We detected significant differences between groups for level sum-scores and preference-weighted scores, as hypothesised; all tests were significant (p < 0.001), with moderate effect sizes (effect sizes were slightly higher for female than male parents). The regression analysis identified significantly different EQ-HWB-S scores for child health samples compared with the general population after controlling for demographic variables. Differences were observed between child health conditions. CONCLUSION The EQ-HWB-S is a useful instrument to measure parent quality of life for economic evaluation in this population. Data were limited to one time point; further research should investigate the instrument's sensitivity to change and test-retest reliability in this population.
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Affiliation(s)
- Cate Bailey
- Melbourne Health Economics, Melbourne School of Population and Global Health, The University of Melbourne, Level 4, 207 Bouverie St, Carlton, VIC, 3053, Australia.
| | - Kim Dalziel
- Melbourne Health Economics, Melbourne School of Population and Global Health, The University of Melbourne, Level 4, 207 Bouverie St, Carlton, VIC, 3053, Australia
| | - Renee Jones
- Melbourne Health Economics, Melbourne School of Population and Global Health, The University of Melbourne, Level 4, 207 Bouverie St, Carlton, VIC, 3053, Australia
| | - Harriet Hiscock
- Health Services and Economics, Murdoch Children's Research Institute, Melbourne, VIC, Australia
- Health Services Research Unit, Royal Children's Hospital, Melbourne, VIC, Australia
- Department of Paediatrics, University of Melbourne, Melbourne, VIC, Australia
| | - Nancy J Devlin
- Melbourne Health Economics, Melbourne School of Population and Global Health, The University of Melbourne, Level 4, 207 Bouverie St, Carlton, VIC, 3053, Australia
| | - Tessa Peasgood
- Melbourne Health Economics, Melbourne School of Population and Global Health, The University of Melbourne, Level 4, 207 Bouverie St, Carlton, VIC, 3053, Australia
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Kara K, Kara OK, Sutcu G, Tonak HA. The Relationship Between Fatigue and Quality of Life in the Turkish Mothers of Children with Autism Spectrum Disorder. J Autism Dev Disord 2024:10.1007/s10803-024-06398-z. [PMID: 38764072 DOI: 10.1007/s10803-024-06398-z] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 05/06/2024] [Indexed: 05/21/2024]
Abstract
This study aimed to investigate the different effects of fatigue and health-related quality of life in the Turkish mothers of children with autism spectrum disorder (ASD) through comparisons with mothers of typically developing children, and to evaluate the relationship between different aspects of maternal fatigue, depression, and maternal health-related quality of life. The study included a total of 103 mothers, comprising 60 mothers of children with ASD and 43 mothers of typically developing children. The Nottingham Health Profile and Quality of Life in Autism Questionnaire-Parent Version were used to assess the health-related quality of life. Fatigue was assessed comprehensively with the Fatigue Impact Scale and the Fatigue Severity Scale. The Nottingham Health Profile total and physical mobility domain and the quality of life were the strongest factors, explaining with a variance of 66.7% the fatigue impact on cognitive function. The mothers' quality of life accounted for 64.8% of the variance in factors that explained fatigue. Physical mobility, social isolation and quality of life were associated with the physical impact of fatigue and were explained with a variance of 52.4%. Emotional reactions and quality of life were explained with a variance of 52.7% in the fatigue of psychosocial function. The current study has highlighted that the fatigue of Turkish mothers of children with ASD has a greater impact on cognitive, physical and psychosocial functions. Furthermore, the quality of life, physical mobility, social isolation, and emotional reactions of mothers have a significant impact on maternal fatigue.
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Affiliation(s)
- Koray Kara
- Department of Child and Adolescent Psychiatry, University of Health Sciences, Antalya Training and Research Hospital, Antalya, Turkey.
| | - Ozgun Kaya Kara
- Faculty of Health Sciences, Department of Physiotherapy and Rehabilitation, Akdeniz University, Antalya, Turkey
| | - Gulsah Sutcu
- Faculty of Health Sciences, Department of Physiotherapy and Rehabilitation, Akdeniz University, Antalya, Turkey
| | - Hasan Atacan Tonak
- Hamidiye Faculty of Health Sciences, Department of Occupational Therapy, University of Health Sciences, Istanbul, Turkey
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Zhu L, Ge X, Huang W, Shao L, Ma X. Exploring the push-pull factors influencing parenting efficacy of fathers of children with ASD: a fuzzy set qualitative comparative analysis. Front Psychiatry 2024; 15:1303484. [PMID: 38779542 PMCID: PMC11109413 DOI: 10.3389/fpsyt.2024.1303484] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/28/2023] [Accepted: 04/22/2024] [Indexed: 05/25/2024] Open
Abstract
Objectives This study aimed to explore the core factors and configurations influencing parenting efficacy for fathers of children with ASD in Western China by using a configuration analysis. Background Understanding the push-pull factors related to parenting efficacy for fathers raising children with ASD can support the fathers of children with ASD to participate in education affairs and improve the quality of family education, which is of significant importance to both individuals and society. This study recruited 156 fathers of children with ASD from China. Results The results suggested that there was more than one (sub) configuration for achieving a high level of parenting efficacy among fathers of children with ASD. (b) The configurations could be summarized into three main types as follows: "working within the system*flexible working time," "high level of education*high level of other support," and "severe disability*fewer interaction with wife." (c) The two variables, "family income" and "community support," were not as important as they were shown in previous studies, and their effects often depended on how they interact with other variables. Conclusions Findings highlighted the validity of deploying configuration analysis (based on the ecosystem theory) to establish the relationship between independent variables and the parenting efficacy of fathers of children with ASD. The discovery of more than one configuration led to a new consensus on how multiple factors influence parenting efficacy. Implications were suggested for practitioners, policymakers, and future research alike.
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Affiliation(s)
- Linli Zhu
- School of Education, South China Normal University, Guangzhou, Guangdong, China
- School of Educational Science, Nanning Normal University, Nanning, Guangxi, China
| | - Xinbin Ge
- School of Education, South China Normal University, Guangzhou, Guangdong, China
| | - Weijun Huang
- School of Special Education, Guangxi College for Preschool Education, Nanning, Guangxi, China
- Graduate School, Lyceum of the Philippines University, Batangas, Philippines
| | - Leyi Shao
- School of Educational Science, Nanning Normal University, Nanning, Guangxi, China
| | - Xiaolan Ma
- School of Educational Science, Nanning Normal University, Nanning, Guangxi, China
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Mavroeidi N, Sifnaios C, Ntinou A, Iatrou G, Konstantakopoulou O, Merino Martínez M, Nucifora M, Tanrikulu I, Vadolas A. Exploring the Potential Impact of Training on Short-Term Quality of Life and Stress of Parents of Children with Autism: The Integrative Parents' Autism Training Module. INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH 2024; 21:474. [PMID: 38673385 PMCID: PMC11050325 DOI: 10.3390/ijerph21040474] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Received: 01/17/2024] [Revised: 04/04/2024] [Accepted: 04/07/2024] [Indexed: 04/28/2024]
Abstract
Parents of autistic children experience high levels of parental stress and low quality of life related to the demanding child caring burden they experience. Parent education and training programs are acknowledged to improve parental well-being and reduce parenting stress. In the framework of the Erasmus+ Integrative Autism Parents Training Project (IPAT), we developed the IPAT Training Module based on parents' expressed needs, in order to improve parental quality of life (QoL) and decrease their perceived stress. Sixty-two parents from four countries participated in the IPAT Module Training activity. We used WHOQOL-BREF and Perceived Stress Scale (PSS-10 version) for QoL and stress, respectively, before and after training and a study-specific questionnaire to assess participants' satisfaction. Parents' QoL improved significantly in the environment domain and specific items, while stress levels remained unmodified. Training appeared more advantageous for parents with lower initial QoL and those whose child had been enrolled in a special education program for an extended duration. Parents were quite satisfied, in particular those with lower initial social relationships QoL. Larger studies including a control group are necessary to support preliminary evidence provided by this study, identify additional effect moderators, and disentangle the contribution of different components of the training.
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Affiliation(s)
- Nikoletta Mavroeidi
- Department of Scientific Documentation and Education, Child and Adolescent Center, 12123 Peristeri, Greece; (C.S.); (G.I.); (A.V.)
| | - Christos Sifnaios
- Department of Scientific Documentation and Education, Child and Adolescent Center, 12123 Peristeri, Greece; (C.S.); (G.I.); (A.V.)
| | | | - Giorgos Iatrou
- Department of Scientific Documentation and Education, Child and Adolescent Center, 12123 Peristeri, Greece; (C.S.); (G.I.); (A.V.)
- Department of Psychology, University of West Macedonia, 53100 Florina, Greece
| | - Olympia Konstantakopoulou
- Center for Health Services Management and Evaluation, Department of Nursing, National and Kapodistrian University of Athens, 11527 Athens, Greece;
| | | | | | - Ibrahim Tanrikulu
- Department of Psychological Counseling & Guidance, Faculty of Education Gaziantep University, Şehitkamil-Gaziantep 27310, Turkey;
| | - Antonios Vadolas
- Department of Scientific Documentation and Education, Child and Adolescent Center, 12123 Peristeri, Greece; (C.S.); (G.I.); (A.V.)
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Larson EA. 5Minutes4Myself: Development of a Wellness Program for Caregivers of Children with Autism. Can J Occup Ther 2024; 91:17-28. [PMID: 37106578 DOI: 10.1177/00084174231172036] [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] [Indexed: 04/29/2023]
Abstract
Background. Many caregivers of autistic children experience increased stress, and diminished health often due to the caregiving demands. Purpose. The project aim was to design a feasible and sustainable wellness program tailored to these caregivers' lives. Methods. In this collaborative research-informed project, participants (N = 28) were mostly female, white, and well-educated. In focus groups, we delineated lifestyle issues, then designed, delivered and assessed an initial program with one cohort; and repeated this process with a second group. Findings. Focus group data were transcribed then coded qualitatively to inform following steps. Data analysis identified lifestyle issues key to program design, desired program elements, and after program delivery, affirmed elements and recommended changes. The team used meta-inferences to guide program revisions after each cohort. Implications. Caregivers viewed resulting 5Minutes4Myself program as filling a significant service gap; its hybrid design used in-person coaching and a habit-building app with mindfulness content to support lifestyle change.
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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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Musetti A, Zagaria A, Pezzi M, Fante C, Dioni B, Raffin C, Manari T, Lenzo V, De Luca Picione R. Parental quality of life, child adjustment and adult attachment in parents of children and adolescents with Autism Spectrum Disorder. RESEARCH IN DEVELOPMENTAL DISABILITIES 2024; 146:104684. [PMID: 38281373 DOI: 10.1016/j.ridd.2024.104684] [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: 05/22/2023] [Revised: 12/27/2023] [Accepted: 01/19/2024] [Indexed: 01/30/2024]
Abstract
BACKGROUND Parents of children and adolescents with Autism Spectrum Disorder (ASD) may experience a lower quality of life (QoL) than parents of offspring with typical development. However, factors associated with parental QoL are not yet fully understood. AIMS This study aimed to investigate the relationships between parental QoL, child adjustment and adult attachment among parents of children and adolescents with ASD. METHODS AND PROCEDURES One hundred and eighty-eight parents of children and adolescents diagnosed with ASD completed a group of self-report questionnaires on sociodemographic variables, QoL (i.e., overall QoL and ASD symptoms-related parental QoL), child adjustment (i.e., offspring's total problems and prosocial behaviors) and adult attachment. OUTCOMES AND RESULTS Structural equation modeling revealed that the overall parental QoL was negatively related to children's total problems and positively associated with prosocial behaviors, as well as with higher levels of secure attachment and lower levels of fearful attachment styles. Additionally, ASD symptoms-related parental QoL was negatively associated with the offspring's total problems. CONCLUSIONS AND IMPLICATIONS This suggests that child characteristics may interact with parental characteristics to either enhance or compromise the QoL of parents of children and adolescents with ASD. Implications of these findings for promoting parental QoL are discussed.
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Affiliation(s)
- Alessandro Musetti
- University of Parma Department of Humanities, Social Sciences and Cultural Industries, Parma, Italy.
| | - Andrea Zagaria
- Sapienza University of Rome Department of Psychology, Roma, Italy
| | - Mattia Pezzi
- University of Parma Department of Humanities, Social Sciences and Cultural Industries, Parma, Italy
| | - Chiara Fante
- Institute for Educational Technologies, National Research Council, Genoa, Italy
| | - Barbara Dioni
- University of Parma Department of Humanities, Social Sciences and Cultural Industries, Parma, Italy; Fondazione Bambini e Autismo Onlus, Pordenone, Italy
| | - Cinzia Raffin
- Fondazione Bambini e Autismo Onlus, Pordenone, Italy
| | - Tommaso Manari
- University of Parma Department of Humanities, Social Sciences and Cultural Industries, Parma, Italy
| | - Vittorio Lenzo
- University of Catania Department Educational Sciences, Catania, Italy
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Gore K, Hayward SM, Flower RL, Gilbert M, Barbaro J. "Maybe No One Knows We Need Help": Understanding the Experiences of Autistic Working Mothers in Australia. AUTISM IN ADULTHOOD 2024; 6:47-59. [PMID: 38435329 PMCID: PMC10902281 DOI: 10.1089/aut.2022.0089] [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: 03/05/2024]
Abstract
Background Although there are no known studies investigating autistic working mothers, research has demonstrated that managing employment and motherhood in non-autistic populations has specific challenges, as does employment in autistic populations. This autistic-led study aimed at investigating the experience of autistic working mothers to identify benefits, challenges, and support needs. Methods We utilized a subjectivist epistemological perspective to learn about the experiences of autistic working mothers. We recruited 10 autistic working mothers (aged 34-50 years) via social media advertisements, who participated in a 45- to 60-minute semi-structured interview where we asked questions developed in consultation with a community reference group. We transcribed interviews and then analyzed them using inductive reflexive thematic analysis. Results We identified three key themes. The first theme, "Wellbeing: Work gives me purpose," discusses how employment supports mental well-being. The second theme, "Challenges: It's hard being an autistic working mother," includes the challenges of balancing work and caregiving, guilt related to being a working mother, and issues with part-time work. The third theme, "The invisible disability: Everyone thinks I look okay," discusses the lack of understanding of participants' challenges, with assumptions they are coping, and the lack of supports that led to some participants no longer seeking assistance. Conclusions The responses of the autistic women who took part support a view that autistic working mothers may experience some similar challenges to non-autistic working mothers, including stress in juggling caring and work roles. They identified additional challenges related to their gender and their autistic identity, including a lack of understanding of the female (or "internalized") presentation of autism. These findings will help autistic working mothers by promoting a better understanding of their experiences and challenges when they speak with health professionals, government, and employers seeking support and accommodations.
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Affiliation(s)
- Katherine Gore
- Olga Tennison Autism Research Centre, La Trobe University, Melbourne, Victoria, Australia
| | - Susan M. Hayward
- School of Social and Political Sciences, The University of Melbourne, Melbourne, Victoria, Australia
| | - Rebecca L. Flower
- Department of Psychology, Counselling, and Therapy, La Trobe University, Bendigo, Victoria, Australia
| | - Melissa Gilbert
- Olga Tennison Autism Research Centre, La Trobe University, Melbourne, Victoria, Australia
| | - Josephine Barbaro
- Olga Tennison Autism Research Centre, La Trobe University, Melbourne, Victoria, Australia
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Halki E, Kapiri M, Plakas S, Tsiou C, Govina O, Galanis P, Alikari V. Fatigue among Greek Parents of Children with Autistic Spectrum Disorder: The Roles of Spirituality and Social Support. Healthcare (Basel) 2024; 12:455. [PMID: 38391830 PMCID: PMC10887754 DOI: 10.3390/healthcare12040455] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/18/2023] [Revised: 01/20/2024] [Accepted: 02/08/2024] [Indexed: 02/24/2024] Open
Abstract
The high demands of caring for and raising a child with autism spectrum disorder on a daily basis may lead parents to physical and mental fatigue. This study aimed to assess the effect of social support and spirituality on the fatigue of parents with children with autistic spectrum disorder. A cross-sectional study with a convenience sample was conducted in Schools of Special Education in Attica (Greece). The sample consisted of 123 parents who completed The Fatigue Assessment Scale (FAS), the Multidimensional Scale of Perceived Social Support (MSPSS), and the Functional Assessment of Chronic Illness Therapy Spiritual Well-Being Scale (FACIT Sp-12) to measure the levels of fatigue, social support, and spirituality, respectively. The Pearson correlation coefficient was used to investigate the relationship between the quantitative variables. To study the effect of social support and spirituality on fatigue, multivariable linear regression was applied. The mean age was 47.3 years old, 81.3% were women, and 38.9% stated "Close/Very close faith toward God". Higher levels of total MSPSS and FACIT Sp-12 were associated with lower total FAS (r = -0.50, p < 0.001 and r = -0.49, p < 0.001, respectively). Social support and spirituality were significant predictors of fatigue.
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Affiliation(s)
- Eugenia Halki
- Post Graduate Program "Management of Chronic Diseases- Neurosciences", Department of Nursing, University of West Attica, 12243 Athens, Greece
| | - Maria Kapiri
- Post Graduate Program "Management of Chronic Diseases- Neurosciences", Department of Nursing, University of West Attica, 12243 Athens, Greece
| | - Sotirios Plakas
- Post Graduate Program "Management of Chronic Diseases- Neurosciences", Department of Nursing, University of West Attica, 12243 Athens, Greece
| | - Chrysoula Tsiou
- Post Graduate Program "Management of Chronic Diseases- Neurosciences", Department of Nursing, University of West Attica, 12243 Athens, Greece
| | - Ourania Govina
- Post Graduate Program "Management of Chronic Diseases- Neurosciences", Department of Nursing, University of West Attica, 12243 Athens, Greece
| | - Petros Galanis
- Post Graduate Program "Management of Chronic Diseases- Neurosciences", Department of Nursing, University of West Attica, 12243 Athens, Greece
| | - Victoria Alikari
- Post Graduate Program "Management of Chronic Diseases- Neurosciences", Department of Nursing, University of West Attica, 12243 Athens, Greece
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AlHefdhi HA, Al Zomia AS, Alshehri NM, Alaskari AA, Hussain AA, Lahiq LA, Asiri MA, Al Asiri W, Alahmari AM, Asiri HM, Alomari SA. Examining the Quality of Life and Discrimination Impact on Parents of Children With Autism Spectrum Disorder in Aseer Region, Saudi Arabia: A WHO-QOL Survey. Cureus 2024; 16:e53616. [PMID: 38449996 PMCID: PMC10916740 DOI: 10.7759/cureus.53616] [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] [Accepted: 02/05/2024] [Indexed: 03/08/2024] Open
Abstract
Background Autism spectrum disorder (ASD) is a neurodevelopmental disease marked by social and repetitive or restricted behaviors, as well as communication difficulty. Objectives This survey aimed to assess the quality of life (QoL) of parents with ASDs in the Aseer region of Saudi Arabia using the brief form of the World Health Organization (WHO-QOL) questionnaire. Furthermore, we sought to measure the severity of discrimination experienced by parents of children with ASDs and their impact on QoL. Methodology Using a Google form, a cross-sectional study was carried out online between March and April 2023. The patient records from four different regions of Saudi Arabia were used to recruit study participants. The survey was distributed through well-known social media channels (Instagram, Telegram, Facebook). Results A total of 99 parents were included in this study. The Southern region accounted for the bulk of participants (81.8%, n=81), nearly three-fourths of the children were boys (70.7%), mothers were more common among respondents (65.7%, n=65) than fathers, 66.7% of respondents reported being married, and 78.8% fall into the middle economic class category. The main source of information among the studied population was the Internet (39.4%, n=39), followed by relatives (23.0%, n=23), physicians (8.1%, n=9), and finally books (4%, n=4). The mean scores for the various domains are as follows: physical (58.48 ± 13.84), psychological (62.04 ± 18.08), social relations (61.20 ± 23.24), environment (24.12 ± 14.62), general QoL (72.93 ± 4.30), and general health (73.94 ± 4.63). Nearly half (46.5%) of parents have encountered stigma or discrimination toward their child or family. Individuals who reported experiencing discrimination exhibited significantly lower mean scores in multiple QoL domains than those who did not report discrimination for physical (54.11, ± 14.36vs, 62.26±12.28, p=0.003), psychological (55.80 ± 20.33 vs 67.45 ± 13.94, p=0.002), and social relations (55.43± 24.17 vs 66.20 ± 21.40, p=0.022). Multivariate analysis revealed that discrimination was the only significant predictor of QoL (p < 0.001). Conclusions The QoL of parents having a child with autism is low, moreover, the coincidence of discrimination and stigma significantly lowered QoL.
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Affiliation(s)
- Hayfa A AlHefdhi
- Family and Community Medicine, King Khalid University, Abha, SAU
| | | | | | | | | | - Lama A Lahiq
- Medicine and Surgery, King Khalid University, Abha, SAU
| | - Muzun A Asiri
- College of Medicine, King Khalid University, Abha, SAU
| | | | | | - Hamad M Asiri
- College of Medicine, King Khalid University, Abha, SAU
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Sartor T, Sons S, Kuhn JT, Tröster H. Coping resources and stress due to demands in parents to children with autism spectrum disorder. FRONTIERS IN REHABILITATION SCIENCES 2023; 4:1240977. [PMID: 37869574 PMCID: PMC10588644 DOI: 10.3389/fresc.2023.1240977] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Subscribe] [Scholar Register] [Received: 06/15/2023] [Accepted: 09/19/2023] [Indexed: 10/24/2023]
Abstract
Introduction Parents to children with autism spectrum disorder (ASD) are exposed to numerous demands in their daily lives and exhibit high levels of stress. The present study aims to find out which coping resources are mediators that help parents cope with these demands and which of those coping resources amplify or reduce stress arising from the demands. Studies often only focus on the connection between coping resources and stress without taking the demands into account at the same time. Methods For this reason, a mediation model was set up to answer the research question. Data from a German questionnaire survey with N = 266 parents who have children with ASD (two to 23 years old) were used. Subjectively perceived demands in everyday life (scale "Parental demands in everyday life"), parental stress ("Parental Stress Inventory", based on Abidin's parenting stress model) and the following coping resources were collected: parental self-efficacy beliefs ("Parents' sense of competence questionnaire"), available social support of parents (scale "Availability of social support") and parental coping strategies (German version of the Brief COPE). Results An exploratory factor analysis revealed four mediators: dysfunctional coping, functional coping, social support, and self-efficacy. The use of dysfunctional behavior and parental self-efficacy were found to be significant mediators that mediated between daily demands and parental stress. A direct effect of demands on parental stress was also found, implying partial mediation. The two factors of functional coping and support were not found to be significant mediators. Discussion Key findings indicate that parental stress resulting from the daily demands of parenting children with ASD can be reduced by high parental self-efficacy and increased by dysfunctional coping. For practice, it can be deduced that dysfunctional coping strategies of parents to children with ASD should be reduced and parental self-efficacy should be strengthened in order to reduce stress which arises from the multiple demands in everyday life.
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Sartor T, Sons S, Kunina-Habenicht O, Tröster H, Kuhn JT. Demands and stress before and during the COVID-19 pandemic of parents to children with autism spectrum disorder. Front Psychol 2023; 14:1212556. [PMID: 37854145 PMCID: PMC10580071 DOI: 10.3389/fpsyg.2023.1212556] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/27/2023] [Accepted: 09/19/2023] [Indexed: 10/20/2023] Open
Abstract
Introduction Parents to children with Autism Spectrum Disorder (ASD) face diverse daily demands that can lead to stress. The aim of this study was to examine to which extent stress in parents to children with ASD can be explained by daily demands before and during the COVID-19 pandemic (after lockdowns; first half of 2022), and whether there are differences between the two time periods in this regard. Methods Data from parents to children with ASD living in Germany from two independent questionnaire studies (before the pandemic: N = 168, during the pandemic: N = 105) were matched for comparability. Simple and multiple linear regression analyses were used to answer the research question. Results Parental stress as well as all demands examined showed higher levels during the COVID-19 pandemic than before. Significant predictors of parental stress before and during the COVID-19 pandemic were (1) the daily demands to deal with the child's problem behavior, (2) the restriction of one's personal way of life, and (3) the challenge to cooperate with the partner. During the COVID-19 pandemic, the child's problem behavior was particularly relevant. It was also found that the demand to deal with stigmatizing reactions did not explain parental stress during the COVID-19 pandemic whereas before the pandemic it had been a significant predictor. Discussion Although parental stress and the demands of daily life increased during the pandemic, most of the stress can be explained by the same demands. It is suggested that the increased levels may be due to an increase in the child's ASD symptomatology, which is why it is advisable to install therapeutic and care structures that prepare children with ASD for future crises.
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Baker EK, Giallo R, Seymour M, Hearps SJ, Wood CE. A longitudinal study of the relationships between sleep problems in autistic children and maternal mental health. AUTISM : THE INTERNATIONAL JOURNAL OF RESEARCH AND PRACTICE 2023; 27:1891-1905. [PMID: 36691305 DOI: 10.1177/13623613221147397] [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] [Indexed: 01/25/2023]
Abstract
LAY ABSTRACT Autistic children experience increased the rates of sleep problems. These sleep problems have been associated with mother's mental health symptoms. However, the direction of these relationships is not well understood. This study investigated the relationships between autistic children's sleep problems and mothers' mental health over a 12-year period using data collected as part of the Longitudinal Study of Australian Children. Data from 397 autistic children and their mothers were included in this study. Mothers completed a questionnaire about their own mental health and common childhood sleep problems at four time points from 4-5 years to 14-15 years. The results showed important relationships between mothers' mental health symptoms and child sleep problems at two time points. Specifically, (1) mothers' mental health symptoms when the child was aged 4 to 5 years predicted child sleep problems at age 6 to 7 years; and (2) child sleep problems at age 12-13 years predicted mothers' mental health symptoms when the child was aged 14 to 15 years. Interestingly, these significant relationships also coincide with key developmental transition time points, when the child is transitioning in and out of primary school. These findings highlight the need for increased support for both the child and mother at these times to optimise outcomes for both.
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Affiliation(s)
- Emma K Baker
- Swinburne University of Technology, Australia
- Murdoch Children's Research Institute, Australia
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Schwartzman JM, Williams ZJ, Paterson AV, Jacobs AX, Corbett BA. Community-guided measurement-based care for autistic youth and adults receiving psychotherapy: A conceptual overview and pilot implementation study of MBC-AUT. AUTISM : THE INTERNATIONAL JOURNAL OF RESEARCH AND PRACTICE 2023; 27:1658-1675. [PMID: 36632662 PMCID: PMC10333447 DOI: 10.1177/13623613221143587] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/13/2023]
Abstract
LAY ABSTRACT Autistic youth and adults are more likely to experience psychiatric symptoms (e.g. depression, anxiety) and to use psychiatric services than non-autistic people, yet research on evidence-based approaches to enhance psychiatric care for autistic people is limited. Measurement-based care is an evidence-based approach to psychotherapy that improves outcomes for clients, clinicians, and organizations by routinely administering and evaluating measures to clients. Despite this, research on measurement-based care systems for autistic clients is sparse. To address this gap, we developed an autism-adapted measurement-based care (MBC-AUT) system for and with autistic people and pilot tested the system in an outpatient psychiatry clinic to investigate the preliminary feasibility, acceptability, benefits, and barriers to this system for clients and clinicians. Findings suggested that the MBC-AUT system was a feasible and acceptable system for the first 18 autistic youth, their caregivers, and autistic adults to use the system. In semi-structured interviews, clients and clinicians discussed the benefits of the MBC-AUT system to various therapeutic processes, as well as several important barriers to the use of the system. We offer potential solutions to address these barriers and to reduce client and clinician burden, and propose future directions for this line of research to increase access to more autistic people. As autistic clients continue to seek psychological services amid social landscapes of increasing complexity (e.g. COVID-19 pandemic), efforts to enhance the delivery of psychotherapy for this population are critical.
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Affiliation(s)
| | | | | | | | - Blythe A Corbett
- Vanderbilt University Medical Center, USA
- Vanderbilt University, USA
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Chin WC, Chang HL, Chao KY. Exploring Coping Strategies of Parents of Children With Autism Spectrum Disorder in Taiwan: A Qualitative Study. J Nurs Res 2023; 31:e278. [PMID: 37097915 DOI: 10.1097/jnr.0000000000000553] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 04/26/2023] Open
Abstract
BACKGROUND Children with autism spectrum disorder (ASD) experience impairments in their social interactions, language communication, and stereotypical patterns of behavior. Parents of children with ASD experience higher levels of stress and more depression and anxiety than parents of children with other disabilities or typically developing children. Parents of children with disabilities develop coping strategies to counteract the stresses associated with raising a child with special needs. Understanding coping strategies to help counteract the stresses associated with parenting a child with ASD may enhance well-being in parents of children with ASD, improve the quality of care provided to these children, and foster better parent-child relationships. PURPOSE The purpose of this study was to explore the coping strategies used by parents in Taiwan parenting a child with ASD. METHODS In this descriptive qualitative study, thematic analysis was conducted on data collected during face-to-face interviews. Fourteen parents of children with ASD were recruited using purposive sampling. Researchers employed a teamwork approach for data analysis to increase the dependability and consistency of the transcribed interviews. Team members discussed coding and identified the themes collaboratively. RESULTS Taiwanese parents of children with ASD coped with the psychological impacts of parenting by employing problem-focused and emotion-focused strategies. Problem-focused strategies included communication, support, and management, whereas emotion-focused strategies included acceptance and adaptation. Findings showed that both coping strategies were useful in addressing specific situations and circumstances. Social and clinical support improved parents' mental health and children's external behaviors. CONCLUSIONS/IMPLICATION FOR PRACTICE Healthcare providers should evaluate how parents are coping with the stresses related to raising a child with ASD and consider the cultural factors that might influence how they accept and adapt to parenting children with ASD. Understanding these variables may be used to tailor strategies appropriate to reducing stress and improving the well-being of parents and their children. Support and resource referrals should be considered, including parent support groups, books, web-based services, and recommendations for professional consultations with social workers or therapists.
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Affiliation(s)
- Wei-Chih Chin
- MD, Attending Physician, and Assistant Professor, Department of Child Psychiatry and Sleep Center, Linkou Chang Gung Memorial Hospital, and College of Medicine, Chang Gung University, Taoyuan, Taiwan
| | - Hsueh-Ling Chang
- MD, Attending Physician, and Assistant Professor, Neo-psych Clinic, Taipei, Taiwan
| | - Kuo-Yu Chao
- PhD, RN, Associate Professor, Department of Nursing, Chang Gung University of Science and Technology, and Division of Colon and Rectal Surgery, Linkou Chang Gung Memorial Hospital, Taoyuan, Taiwan
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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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Tan WY, Hamzaid NH, Ibrahim N. Parental Perceptions on the Importance of Nutrients for Children with Autism Spectrum Disorder (ASD) and the Coping Strategies: A Qualitative Study. Nutrients 2023; 15:nu15071608. [PMID: 37049449 PMCID: PMC10096955 DOI: 10.3390/nu15071608] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/07/2023] [Revised: 03/08/2023] [Accepted: 03/21/2023] [Indexed: 03/29/2023] Open
Abstract
Autism Spectrum Disorder (ASD) is a developmental disorder that comes with co-occurring eating behavior such as limited food varieties, selective food intake, and repetitive eating patterns, contributing to significant challenges for their parents. Many parents find mealtimes difficult and develop anxiety or stress about their child’s nutrition, health, and overall well-being. Hence, parents must equip themselves with the correct awareness and nutrition knowledge. An online open-ended semi-structured interview was conducted among fifteen parents from the community-rehabilitation program center to explore their understanding of nutrition’s importance and the possible coping strategies when facing challenges. The interview sessions were recorded, followed by three researchers’ coding processes. Data were then subjected to thematic analysis. The interview sessions suggested that the parents were aware of the autism trait eating behavior and had a general knowledge about nutrition. However, it was quite challenging when it came to preparation. Nevertheless, the parents are able to manage the challenges with unique kinds of coping strategies. In addition, a complete educational dietary intervention program including psychosocial aspects for parents is recommended for better effectiveness.
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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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Rouhani A, Hemati Alamdarloo G. Social support in parents of children with neurodevelopmental disorders. INTERNATIONAL JOURNAL OF DEVELOPMENTAL DISABILITIES 2022; 70:879-886. [PMID: 39131756 PMCID: PMC11308950 DOI: 10.1080/20473869.2022.2154923] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Subscribe] [Scholar Register] [Received: 09/02/2022] [Revised: 11/30/2022] [Accepted: 11/30/2022] [Indexed: 08/13/2024]
Abstract
The aim of the present study was to compare the social support in parents of children with neurodevelopmental disorders. The sample consisted of 166 parents of children with neurodevelopmental disorders in Isfahan, Iran. Medical Outcomes Study Social Support Survey (MOS-SSS, Sherbourne and Stewart 1991) was used for measuring the availability of social support. The collected data were analyzed using two-way analysis of variance and multivariate analysis of variance. The results showed that there was no significant difference in social support scores between parents of children with neurodevelopmental disorders based on the type of child disorder and the gender of the parents (p > 0.05). The results also showed that there was no significant difference in the subscale of emotional/informational support, tangible support, and affectionate support between parents of children with neurodevelopmental disorders (p > 0.05) but in the one subscale (i.e. social interaction) parents of children with intellectual disability was significantly higher than parents of children with autism spectrum disorder and parents of children with attention deficit hyperactivity disorder. Moreover, The results showed that there was no significant difference in subscales of social support between parents of children with neurodevelopmental disorders based on the gender of the parents (p > 0.05). Therefore, according to the research findings, the design and implementation of support and educational programs for parents of children with neurodevelopmental disorders, especially in parents of children with ASD and ADHD, and to increase social interactions are essential and should be a priority in the programs of organizations providing psychological services.
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Affiliation(s)
- Ali Rouhani
- Special Education Department, School of Education and Psychology, Shiraz University, Shiraz, Iran
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Mitchelson H, Adams D, Simpson K. Factors and experiences that influence school mobility for autistic students: A systematic review. BRITISH JOURNAL OF EDUCATIONAL PSYCHOLOGY 2022; 92:1366-1383. [PMID: 35426441 PMCID: PMC9790319 DOI: 10.1111/bjep.12505] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/06/2021] [Revised: 03/04/2022] [Accepted: 03/06/2022] [Indexed: 12/30/2022]
Abstract
BACKGROUND Autistic students are reported to move schools at a high rate, but little is understood about why this is happening. What is known is that the effects of school mobility can negatively impact both short- and long-term outcomes, particularly the child's learning, behaviours, mental health and school retention. AIMS The aim of this systematic review was to synthesize the research on factors and experiences which influence the family's decision to move their autistic child to another school. METHODS A protocol was registered with PROPERO (ID: CRD4202120794). Searches were conducted with ERIC, Scopus and Web of Science and seven studies were identified. RESULTS The studies focused on three main types of mobility: mainstream-to-mainstream school moves, moving between mainstream and segregated schools, and moving between mainstream and homeschool. Parents' concerns for their child's learning, social experiences and mental health, as well as their own interactions with their child's school, influenced the decision to leave. Whilst there were similarities across the studies for reasons to move, there were also differences based upon the settings between which students moved. CONCLUSION The findings highlight the need for further research across all school mobility types to better understand the reasons underpinning high rates of school mobility for autistic students.
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Affiliation(s)
- Hayley Mitchelson
- Autism Centre of ExcellenceGriffith Institute for Educational ResearchBrisbaneQueenslandAustralia
| | - Dawn Adams
- Autism Centre of ExcellenceGriffith Institute for Educational ResearchBrisbaneQueenslandAustralia
| | - Kate Simpson
- Autism Centre of ExcellenceGriffith Institute for Educational ResearchBrisbaneQueenslandAustralia
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Chen G, Oubibi M, Liang A, Zhou Y. Parents' Educational Anxiety Under the "Double Reduction" Policy Based on the Family and Students' Personal Factors. Psychol Res Behav Manag 2022; 15:2067-2082. [PMID: 35983019 PMCID: PMC9379115 DOI: 10.2147/prbm.s370339] [Citation(s) in RCA: 8] [Impact Index Per Article: 2.7] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/02/2022] [Accepted: 07/29/2022] [Indexed: 01/04/2023] Open
Abstract
Introduction Educational anxiety is a true portrayal of Chinese parents. As an endogenous problem in the development of modern education system, the pressure of students' entrance examination continues to rise. Methods Based on the empirical survey data of education in 3298 families, this study uses the analysis method of multiple linear regressions to analyze the influencing factors of parental education anxiety and finds that educational anxiety has become a common social emotion. Results After the regression analysis of the four-layer model was established, it was found that different school segments, school priorities, and student achievements had a significant impact on parents' educational anxiety, and factors such as annual family income, educational satisfaction and family parenting style had a significant impact on parental educational anxiety. It is worth noting that the gap in parental expectations has a significant positive effect on educational anxiety, and the greater the expectation gap, the higher the educational anxiety of parents. Discussion Therefore, it is suggested that governments at all levels should conscientiously implement the task of "reducing burdens" and rationally allocate high-quality educational resources; parents and teachers should start from the needs of children to establish a scientific concept of education and the concept of becoming a talent; the whole society should put forward reasonable educational expectations in education, and be good at adjusting expectations on time so that education can return to a rational natural growth state and eliminate parents' educational anxiety.
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Affiliation(s)
- Gaoyu Chen
- College of Teacher Education, College of Education and Human Development, Zhejiang Normal University, Jinhua, People’s Republic of China
| | - Mohamed Oubibi
- College of Teacher Education, College of Education and Human Development, Zhejiang Normal University, Jinhua, People’s Republic of China
- Key Laboratory of Intelligent Education Technology and Application of Zhejiang Province, Zhejiang Normal University, Jinhua, People’s Republic of China
| | - Anni Liang
- College of Teacher Education, College of Education and Human Development, Zhejiang Normal University, Jinhua, People’s Republic of China
| | - Yueliang Zhou
- College of Teacher Education, College of Education and Human Development, Zhejiang Normal University, Jinhua, People’s Republic of China
- Key Laboratory of Intelligent Education Technology and Application of Zhejiang Province, Zhejiang Normal University, Jinhua, People’s Republic of China
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Lee MH, Min A, Park C, Kim I. How Do Sleep Disturbances Relate to Daytime Functions, Care-related Quality of Life, and Parenting Interactions in Mothers of Children with Autism Spectrum Disorder? J Autism Dev Disord 2022:10.1007/s10803-022-05532-z. [PMID: 35441918 DOI: 10.1007/s10803-022-05532-z] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 03/14/2022] [Indexed: 11/24/2022]
Abstract
Sleep disturbance is prevalent in caregivers and associated with negative physical, mental, and functional outcomes. This study examined the effects of sleep disturbance on daytime functions (sleepiness, fatigue, mood, cognitive alertness), care-related quality of life, and daily parenting interactions in 20 mothers of children with autism spectrum disorder for 10 consecutive days using ecological momentary assessment design. Participants responded about daytime functions four times and care-related quality of life and daily parenting interactions once using an online survey. Sleep disturbance was significantly related to all daytime functions and frustration with childcare. Therefore, development of sleep hygiene interventions is warranted to effectively reduce the impact of sleep disturbance and enable these mothers to better tackle daily physical and mental challenges.
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Affiliation(s)
- Meen Hye Lee
- Department of Nursing, Gangneung-Wonju National University, Gangneung, South Korea
| | - Ari Min
- Department of Nursing, Chung-Ang University, Seoul, South Korea
| | - Chang Park
- College of Nursing, University of Illinois at Chicago, Chicago, United States
| | - Inah Kim
- School of Nursing, Duquesne University, Fisher Hall 510, 600 Forbes Avenue, 15282, Pittsburgh, PA, United States.
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Patel AD, Arya A, Agarwal V, Gupta PK, Agarwal M. Burden of care and quality of life in caregivers of children and adolescents with autism spectrum disorder. Asian J Psychiatr 2022; 70:103030. [PMID: 35180464 DOI: 10.1016/j.ajp.2022.103030] [Citation(s) in RCA: 17] [Impact Index Per Article: 5.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/13/2021] [Revised: 01/29/2022] [Accepted: 02/11/2022] [Indexed: 11/02/2022]
Abstract
BACKGROUND Autism spectrum disorder is a neurodevelopmental disorder which is increasing across the globe. The disorder in children not only creates burden of care in caregivers but also leads to impaired quality of life of families. OBJECTIVE To study the burden of care and quality of life in caregivers of children and adolescents with ASD. METHODOLOGY Cross sectional study conducted in Child and Adolescent psychiatry outpatient services at a government centre in north India between September 2014 to August 2015. The sample consisted of 40 caregivers of children with Autism. Mean age of the caregiver's were 34.72 ± 6.32 years. Burden of care and quality of life were measured by Burden Assessment Schedule (BAS) and World Health Organization Quality of Life Instrument, Short Form (WHOQOL-BREF) questionnaire respectively. RESULTS Mean burden of care on BAS was 71.73 ± 8.62 indicating quite a high degree of burden on the caregivers of ASD. Significantly higher burden was reported by caregivers belonging to low income families and caregivers of children in age group 6-12 years. A positive correlation was observed between severity of autism and burden of care in caregivers. The study also found that as the severity of symptom increases the QoL in caregiver worsens. CONCLUSION Caregivers of children with ASD suffer from high burden of care and impaired QoL.
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Affiliation(s)
- Amar Deep Patel
- Department of Psychiatry, Maharaja Suhel Dev Autonomous State Medical College, Bahraich, Uttar Pradesh, India.
| | - Amit Arya
- Department of Psychiatry, King George's Medical University, Lucknow, Uttar Pradesh, India.
| | - Vivek Agarwal
- Department of Psychiatry, King George's Medical University, Lucknow, Uttar Pradesh, India.
| | - Pawan Kumar Gupta
- Department of Psychiatry, King George's Medical University, Lucknow, Uttar Pradesh, India.
| | - Manu Agarwal
- Department of Psychiatry, King George's Medical University, Lucknow, Uttar Pradesh, India.
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Wang Z, Wang L, Chang S, Wang H. The Mediating Effect of Parenting Stress on the Relationship Between Social Support and Quality of Life in Parents of Children With Autistic Spectrum Disorder: A Meta-Analytic Structural Equation Modeling. Front Psychiatry 2022; 13:713620. [PMID: 35250654 PMCID: PMC8891381 DOI: 10.3389/fpsyt.2022.713620] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/03/2021] [Accepted: 01/17/2022] [Indexed: 11/17/2022] Open
Abstract
OBJECTIVE The aim of the present study is to investigate whether parenting stress mediate the relationship between social support and quality of life in parents of children with Autistic Spectrum Disorder. In addition, we examined what other variables moderate the relationships in this mediation model. METHODS Using the two-stage meta-analytic structural equation modeling approach (MASEM), 44 correlation matrices were synthesized from 28 empirical studies (N = 13,270) and fitted to the hypothesized mediation model. RESULTS There is a significant partial mediation effect of parenting stress on the relationship between social support and quality of life. Subgroup analysis through the first stage analysis suggested that social support measurements, parental role, and child's age moderated the relationship between social support and parenting stress, and that the focus of quality of life moderated the relationship between social support and quality of life. Subgroup analysis through the second stage analysis indicated that parenting stress had a significantly stronger predictive effect on quality of life in Western culture, while the predictive effect of social support on quality of life was significantly stronger in Eastern culture. CONCLUSION Having more social support can reduce parents' stress and then improving their quality of life, which can help them cope more positively and effectively with their autistic children.
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Affiliation(s)
- Zhidan Wang
- School of Education Science, Jiangsu Normal University, Xuzhou, China
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Feng Y, Zhou X, Liu Q, Deng T, Qin X, Chen B, Zhang L. Symptom severity and posttraumatic growth in parents of children with autism spectrum disorder: The moderating role of social support. Autism Res 2022; 15:602-613. [PMID: 35048558 DOI: 10.1002/aur.2673] [Citation(s) in RCA: 7] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/23/2021] [Revised: 12/20/2021] [Accepted: 01/07/2022] [Indexed: 11/07/2022]
Abstract
Parents of children with autism spectrum disorder (ASD) experience posttraumatic growth (PTG). No study has investigated the moderating effect of social support and family function between symptom severity and PTG. The study aims to examine whether social support and family function moderate the relationship between symptom severity and PTG among parents of children with ASD. Using a cross-sectional design, a total of 385 parents of children with ASD were recruited from September 2019 to November 2020 by convenience sampling. Participants completed the Posttraumatic Growth Inventory, Social Support Rating Scale, Autism Behavior Checklist, and Family Apgar Index. Both social support (r = 0.354, p < 0.01) and family function (r = 0.379, p < 0.05) were significantly related to PTG. Although symptom severity was not significantly related to PTG (p > 0.05), social support moderated the correlation between symptom severity and PTG [β(SE) = -0.134 (0.719), p < 0.01, 95% CI = (-3.552, -0.723)]; the positive association was stronger for low social support [β(SE) = 0.145 (0.054), t = 2.675, p < 0.01, 95% CI = (0.038, 0.252)], while the negative association was weaker for high social support [β(SE) = -0.121 (0.051), t = -2.378, p < 0.05, 95% CI = (-0.221, -0.021)]. Family function did not moderate the relationship (p > 0.05). Higher social support appears to buffer the detrimental effect of symptom severity on PTG, and social support seems to be an important factor when delivering interventions aimed at decreasing symptom severity and improving positive growth. LAY SUMMARY: Both social support and family function were positively associated with PTG. Providing sufficient perceived social support and enhancing family function promoted parents' positive psychological experience. Higher social support seemed to buffer the detrimental effect of symptom severity on PTG, and it could be an important intervention target for improving the psychological growth of parents of children with ASD.
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Affiliation(s)
- Yongshen Feng
- School of Nursing, Sun Yat-sen University, Guangzhou, China
| | - Xuezhen Zhou
- Sun Yat-sen Memorial Hospital, Sun Yat-Sen University, Guangzhou, China
| | - Qian Liu
- Sun Yat-sen Memorial Hospital, Sun Yat-Sen University, Guangzhou, China
| | - Tao Deng
- School of Nursing, Sun Yat-sen University, Guangzhou, China
| | - Xiuqun Qin
- The Third Affiliated Hospital, Sun Yat-sen University, Guangzhou, China
| | - Biyuan Chen
- The Third Affiliated Hospital, Sun Yat-sen University, Guangzhou, China
| | - Lifeng Zhang
- School of Nursing, Sun Yat-sen University, Guangzhou, China
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Zhou J, Gao S, Sun T, Gao W, Fu W, Ying Z, Mao W. Sleep quality, anxiety, somatic symptoms, and features of brain structure in parents of children with disabilities. SOCIAL BEHAVIOR AND PERSONALITY 2022. [DOI: 10.2224/sbp.11557] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/05/2022]
Abstract
We investigated sleep quality, anxiety, and somatic symptoms of 330 parents of children aged 0–6 years with disabilities, and explored the features of their brain structure using the Pittsburgh Sleep Quality Index Scale, the Patient Health Questionnaire-15, and the Generalized Anxiety Disorder-7. We compared these results with those of a control group of parents (n = 330) of children with typical development. The parents of children with disabilities were divided into a poor-sleep-quality subgroup and a good-sleep-quality subgroup, and then 20 parents from each subgroup were randomly selected for analysis of variance of magnetic resonance imaging scanning. There were significant positive correlations between scores on the three scales for the parents of children with disabilities, and their mean scores for all scales were also significantly higher than those of the control group. Moreover, among the parents of children with disabilities, those with poorer sleep quality had lower density of gray matter in brain regions related to emotional cognition. These results suggest that parents raising children with disabilities may have poorer sleep and be more likely to have somatic symptoms and generalized anxiety than are parents of children with typical development; furthermore, these effects may correspond to changes in brain structure.
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Affiliation(s)
- Jing Zhou
- Ningbo College of Health Science
- Dhurakij Pundit University
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ALBusaidi AMS, ALMasroori SAS, Awladthani BMS, ALKhaldi SA, Al Alawi N, Al Salmani AA. Quality of life and coping strategies used by parents of children with autism spectrum disorder in Oman. AUTISM & DEVELOPMENTAL LANGUAGE IMPAIRMENTS 2022; 7:23969415221142262. [PMID: 36466041 PMCID: PMC9716633 DOI: 10.1177/23969415221142262] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Indexed: 06/17/2023]
Abstract
OBJECTIVE Raising a child with autism spectrum disorder (ASD) can have a significant impact on quality of life (QOL). This study was conducted to assess the QOL and coping strategies of parents of children with ASD in Oman. METHOD This descriptive cross-sectional study was conducted at Al-Masarra psychiatric hospital. Telephone interviews were conducted with the parents of all children diagnosed with ASD and attending Al-Masarra Hospital between January 2018 and October 2021. Data were collected using the Ways of Coping Checklist-Revised and World Health Organization Quality of Life Assessment-Brief. RESULTS A total of 304 parents participated in the study (response rate: 100%), of which 59.5% were female. The mean age of the parents and children with ASD was 40.4 ± 6.9 and 8.4 ± 2.3 years, respectively. Most children with ASD were male (78.3%) and entirely dependent upon their parents (18.1%). Seeking social support was the most common coping strategy (75.53 ± 13.99), while escape avoidance was the least common (51.78 ± 8.04). Most parents (48.7%) rated their QOL as good to very good, with acceptable scores in the psychological (70.92 ± 11.22) and social (73.27 ± 11.46) domains, borderline in the physical health domain (63.51 ± 7.77), and poor in the environmental domain (58.31 ± 11.00). CONCLUSIONS Omani parents of children with ASD utilize various coping strategies, with coping skills considered a positive index for mental health in general. No significant differences were observed between Omani fathers and mothers in terms of QOL or coping strategies.
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Li F, Xu M, Wu D, Tang Y, Zhang L, Liu X, Zhou L, Li F, Jiang L. From child social impairment to parenting stress in mothers of children with ASD: The role of parental self-efficacy and social support. Front Psychiatry 2022; 13:1005748. [PMID: 36147986 PMCID: PMC9485583 DOI: 10.3389/fpsyt.2022.1005748] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/28/2022] [Accepted: 08/17/2022] [Indexed: 11/17/2022] Open
Abstract
OBJECTIVES Children with autism spectrum disorder (ASD) can exhibit persistent deficits in social communication, causing their mothers to experience elevated parenting stress during the childrearing process. Some internal and external psychosocial resources may mediate or moderate the mother-child relationship, though the underlying mechanisms remain unclear. This study aimed to explore the predictors of parenting stress in mothers of children with ASD and elucidate the mechanisms underlying the relationship between child social impairment and parenting stress. METHODS A cross-sectional study was conducted between October 2020 and March 2022 in Shanghai, China. Mothers of children with ASD completed a survey investigating child social impairment, parenting stress, parental self-efficacy, and social support. RESULTS A total of 185 mothers of children with ASD were included in the final analysis. 70.27 percent of mothers experienced a clinically significant level of parenting stress. Child social impairment (r = 0.46, P < 0.001), parental self-efficacy (r = -0.58, P < 0.001), and social support (r = -0.35, P < 0.001) were significantly correlated with parenting stress. Parental self-efficacy completely mediated the relationship between child social impairment and parenting stress (B = 0.51, P < 0.001), after controlling for socioeconomic status (SES) correlated with parenting stress. There was no significant moderating effect of social support between child social impairment and parenting stress (B = 0.01, P = 0.09). CONCLUSION Future early intervention programs that focused on child's social communication skills and empowered mothers with related strategies through group-based parent training programs may help reduce parenting stress.
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Affiliation(s)
- Fēi Li
- Department of Nursing, Xinhua Hospital Affiliated to Shanghai Jiao Tong University School of Medicine, Shanghai, China.,Department of Developmental and Behavioral Pediatric and Child Primary Care, Brain and Behavioral Research Unit of Shanghai Institute for Pediatric Research, Ministry of Education-Shanghai Key Laboratory for Children's Environmental Health, Xinhua Hospital Affiliated to Shanghai Jiao Tong University School of Medicine, Shanghai, China
| | - Mingyu Xu
- Department of Developmental and Behavioral Pediatric and Child Primary Care, Brain and Behavioral Research Unit of Shanghai Institute for Pediatric Research, Ministry of Education-Shanghai Key Laboratory for Children's Environmental Health, Xinhua Hospital Affiliated to Shanghai Jiao Tong University School of Medicine, Shanghai, China
| | - Danping Wu
- Department of Developmental and Behavioral Pediatric and Child Primary Care, Brain and Behavioral Research Unit of Shanghai Institute for Pediatric Research, Ministry of Education-Shanghai Key Laboratory for Children's Environmental Health, Xinhua Hospital Affiliated to Shanghai Jiao Tong University School of Medicine, Shanghai, China
| | - Yun Tang
- Department of Developmental and Behavioral Pediatric and Child Primary Care, Brain and Behavioral Research Unit of Shanghai Institute for Pediatric Research, Ministry of Education-Shanghai Key Laboratory for Children's Environmental Health, Xinhua Hospital Affiliated to Shanghai Jiao Tong University School of Medicine, Shanghai, China.,Faculty of Education, Yunnan Normal University, Kunming, China
| | - Lingli Zhang
- Department of Developmental and Behavioral Pediatric and Child Primary Care, Brain and Behavioral Research Unit of Shanghai Institute for Pediatric Research, Ministry of Education-Shanghai Key Laboratory for Children's Environmental Health, Xinhua Hospital Affiliated to Shanghai Jiao Tong University School of Medicine, Shanghai, China
| | - Xin Liu
- Department of Developmental and Behavioral Pediatric and Child Primary Care, Brain and Behavioral Research Unit of Shanghai Institute for Pediatric Research, Ministry of Education-Shanghai Key Laboratory for Children's Environmental Health, Xinhua Hospital Affiliated to Shanghai Jiao Tong University School of Medicine, Shanghai, China
| | - Li Zhou
- Department of Developmental and Behavioral Pediatric and Child Primary Care, Brain and Behavioral Research Unit of Shanghai Institute for Pediatric Research, Ministry of Education-Shanghai Key Laboratory for Children's Environmental Health, Xinhua Hospital Affiliated to Shanghai Jiao Tong University School of Medicine, Shanghai, China.,Psychology and Neuroscience of Cognition Research Unit, University of Liege, Liège, Belgium
| | - Fei Li
- Department of Developmental and Behavioral Pediatric and Child Primary Care, Brain and Behavioral Research Unit of Shanghai Institute for Pediatric Research, Ministry of Education-Shanghai Key Laboratory for Children's Environmental Health, Xinhua Hospital Affiliated to Shanghai Jiao Tong University School of Medicine, Shanghai, China
| | - Liping Jiang
- Department of Nursing, Xinhua Hospital Affiliated to Shanghai Jiao Tong University School of Medicine, Shanghai, China
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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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Ortiz-Rubio A, Torres-Sánchez I, Cabrera-Martos I, Rodríguez-Torres J, López-López L, Prados-Román E, Valenza MC. The Caregiver Burden Inventory as a Sleep Disturbance Screening Tool for Parents of Children with Autism Spectrum Disorder. J Pediatr Nurs 2021; 61:166-172. [PMID: 34090081 DOI: 10.1016/j.pedn.2021.05.013] [Citation(s) in RCA: 5] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/26/2020] [Revised: 05/10/2021] [Accepted: 05/26/2021] [Indexed: 11/15/2022]
Abstract
PURPOSE The study was conducted to explore the degree to which caregiver burden is associated with sleep quality in parents of children with autism spectrum disorder, and to determine a statistically valid cutoff score for the Caregiver Burden Inventory (CBI) in order to identify parents of risk of poor sleep quality. DESIGN AND METHODS We conducted a cross-sectional analysis. We assessed caregiver burden with the CBI, sleep quality with the Pittsburgh Sleep Quality Index, emotional status with the Hospital Anxiety and Depression Scale, and impact on family with the Impact on Family Scale. Caregiver burden was evaluated with a logistic regression analysis. The best fit model was used in a receiver operating characteristic analysis. Likelihood ratios and post-test probabilities were calculated. RESULTS A total of 116 parents were included in this study. Higher caregiver burden was associated with a reduction in sleep quality in the logistic regression analysis (p < 0.001). The area under the curve for the univariate burden test model (best fit) was 76.70 (p < 0.001). The cutoff score for poor sleep quality was caregiver burden ≥26.50. The post-test probability of poor sleep quality increased to 82.02% from a pre-test probability of 76.72%. CONCLUSIONS Our findings suggest that caregiver burden is associated with sleep quality among parents of children with autism spectrum disorder. The findings suggest that a CBI cutoff score of 26.50 may help to detect risk of poor sleep quality in parents of children with autism spectrum disorder.
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Affiliation(s)
- Araceli Ortiz-Rubio
- Department of Physiotherapy, Faculty of Health Sciences, University of Granada, Spain
| | - Irene Torres-Sánchez
- Department of Physiotherapy, Faculty of Health Sciences, University of Granada, Spain
| | - Irene Cabrera-Martos
- Department of Physiotherapy, Faculty of Health Sciences, University of Granada, Spain
| | | | - Laura López-López
- Department of Physiotherapy, Faculty of Health Sciences, University of Granada, Spain
| | - Esther Prados-Román
- Department of Physiotherapy, Faculty of Health Sciences, University of Granada, Spain
| | - Marie Carmen Valenza
- Department of Physiotherapy, Faculty of Health Sciences, University of Granada, Spain.
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Salomone E, Settanni M, McConachie H, Suma K, Ferrara F, Foletti G, Salandin A, Servili C, Adamson LB. Pilot Randomized Controlled Trial of the WHO Caregiver Skills Training in Public Health Services in Italy. J Autism Dev Disord 2021; 52:4286-4300. [PMID: 34677755 PMCID: PMC9508213 DOI: 10.1007/s10803-021-05297-x] [Citation(s) in RCA: 11] [Impact Index Per Article: 2.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 09/17/2021] [Indexed: 11/29/2022]
Abstract
Parents of children with ASD (N = 86; mean age 44.8 months; 67 boys) were randomized to either WHO Caregiver Skills Training (CST) delivered in public health settings in Italy or enhanced treatment-as-usual. Primary blinded outcomes were 3-months post-intervention change scores of autism severity and engagement during caregiver-child interaction. CST was highly acceptable to caregivers and feasibly delivered by trained local clinicians. Intention-to-treat analysis showed a large and significant effect on parent skills supporting joint engagement and a smaller significant effect on flow of interaction. Expected changes in child autism severity and joint engagement did not meet statistical significance. Analysis of secondary outcomes showed a significant effect on parenting stress, self-efficacy, and child gestures. Strategies to improve the effectiveness of CST are discussed.
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Affiliation(s)
- Erica Salomone
- Department of Psychology, University of Milano-Bicocca, Piazza dell'Ateneo Nuovo 1, 20126, Milan, Italy. .,Department of Mental Health and Substance Use, World Health Organization, Geneva, Switzerland.
| | | | - Helen McConachie
- Population Health Sciences Institute, Newcastle University, Newcastle upon Tyne, UK
| | - Katharine Suma
- Department of Human Development and Family Science, University of Georgia, Athens, GA, USA
| | | | - Giulia Foletti
- Department of Psychology, University of Turin, Turin, Italy
| | | | | | - Chiara Servili
- Department of Mental Health and Substance Use, World Health Organization, Geneva, Switzerland
| | - Lauren B Adamson
- Department of Psychology, Georgia State University, Atlanta, Geogia, USA
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Chen SD, Yu Y, Li XK, Chen SQ, Ren J. Parental Self-Efficacy and Behavioral Problems in Children with Autism During COVID-19: A Moderated Mediation Model of Parenting Stress and Perceived Social Support. Psychol Res Behav Manag 2021; 14:1291-1301. [PMID: 34429669 PMCID: PMC8374842 DOI: 10.2147/prbm.s327377] [Citation(s) in RCA: 10] [Impact Index Per Article: 2.5] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/01/2021] [Accepted: 07/31/2021] [Indexed: 12/01/2022] Open
Abstract
PURPOSE COVID-19 pandemic has been verified as a public health emergency of international concern. During the special period, the health of vulnerable groups, such as children with autism, should be concerned. Some studies have been carried out to investigate the behavioral problems of children with autism during the COVID-19, but underlying mechanisms behind it is not clear. This study examines the role of parenting stress as a mediator in the relationship between parental self-efficacy and behavioral problems in Chinese children as well as the role of perceived social support as a moderator for this mediation effect. METHODS A total of 439 parents of children with autism (mean age=40.17, SD=5.26) were surveyed and completed five questionnaires (Conners Parent Symptom Questionnaire, Parental Self-Efficacy Questionnaire, Parenting Stress Index-Short Form 15, Perceived Social Support Questionnaire, and Neuroticism Extraversion Openness Five Factor Inventory). The statistical analyses were conducted by SPSS 26.0 and SPSS PROCESS macro. RESULTS Controlling for neuroticism, which is highly associated with psychological changes in parents, the study found that parental self-efficacy was significantly and negatively correlated with behavioral problems in children with autism. In addition, the relationship between parental self-efficacy and behavioral problems was mediated by parenting stress. Furthermore, parenting stress moderated the indirect relationship between parental self-efficacy and behavioral problems via perceived social support. CONCLUSION These results provide direct evidences for the inextricable relationship between family, social factors and behavioral problems of children with autism. It suggest that improving perceived social support to enhance parental self-efficacy is critical to buffering against parenting stress and stabilizing children with autism during the COVID-19 pandemic.
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Affiliation(s)
- Shu Dan Chen
- School of Education, Guangzhou University, Guangzhou, People’s Republic of China
| | - Yun Yu
- Guangzhou Haizhu Foreign Language School, Guangzhou, People’s Republic of China
| | - Xing Kai Li
- School of Education, Guangzhou University, Guangzhou, People’s Republic of China
| | - Sui Qing Chen
- School of Education, Guangzhou University, Guangzhou, People’s Republic of China
| | - Jie Ren
- School of Education, Guangzhou University, Guangzhou, People’s Republic of China
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