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Ni LS, Wai Tong C, Kam Ki Stanley L. Effects of an acceptance and commitment-based parenting program for parents of children with autism spectrum disorder on parenting stress and other parent and children health outcomes: A pilot randomized controlled trial. AUTISM : THE INTERNATIONAL JOURNAL OF RESEARCH AND PRACTICE 2025; 29:1524-1539. [PMID: 39745093 DOI: 10.1177/13623613241311323] [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: 05/25/2025]
Abstract
This study aimed to investigate the feasibility, acceptability, and preliminary effects of an acceptance and commitment therapy (ACT)-based parenting program for parents of autistic children. A pilot randomized controlled trial (RCT) was conducted, with 40 parents randomly assigned to either the eight-session ACT-based parenting program or usual care. Feasibility was assessed by the rates of recruitment, attritions, and adherence to the intervention. Acceptability was evaluated through participant satisfaction surveys and semi-structured group interviews. Intervention feasibility was established with very satisfactory recruitment, attrition, and intervention completion rates. Both participant satisfaction survey and qualitative interviews suggested that the intervention was acceptable and beneficial for parents of autistic children. Compared to the usual-care-only group, participants in the ACT-based parenting program showed significant improvements in parental stress, depressive symptoms, anxiety symptoms, psychological flexibility, self-efficacy, and reductions in emotional and behavioral problems in their children at the immediate post-intervention assessment. These findings support the feasibility, acceptability, and preliminary effectiveness of the ACT-based parenting program for parents of autistic children. Future larger-scale RCTs can be conducted with longer-term follow-ups and more comprehensive assessment of its effectiveness for family caregivers of diverse groups of autistic children and/or other neurodevelopmental conditions.Lay abstractThis study aimed to examine whether an acceptance and commitment therapy (ACT)-based parenting program, incorporating topics of emotional and stress management, parenting skills training, autism-related education, and self-care learning, could be successfully implemented, well-received, and beneficial for parents of children with autism. We randomly assigned 40 parents to either participate in the eight-session ACT-based parenting program or receive usual care only. The program was found to be feasible, with many parents willing to participate and complete the sessions. The parents also reported high satisfaction with the program and found it beneficial, according to satisfaction surveys and interviews. The results showed that parents who participated in the ACT-based parenting program had significant improvements in several outcomes compared to parents in usual-care-only group, including reduced parenting stress, decreased depressive and anxiety symptoms, and increased confident in their parenting abilities. Their autistic children showed fewer emotional and behavioral problems after the intervention. Based on these findings, we conclude that the ACT-based parenting program is feasible and acceptable and has promising effects for parents of autistic children. In the future, larger studies should be conducted to further explore its effectiveness for different groups of parents caring for children with autism or other neurodevelopmental conditions.
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Affiliation(s)
- Li Si Ni
- The Nethersole School of Nursing, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong
| | - Chien Wai Tong
- The Nethersole School of Nursing, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong
| | - Lam Kam Ki Stanley
- The Nethersole School of Nursing, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong
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Chong YY, Chien WT, Mou HY, Leung SP, Wong OY, Lam SY. Acceptance and Commitment Therapy Eczema Management Program for Children With Eczema: A Pilot Randomised Controlled Trial. Clin Exp Allergy 2025. [PMID: 39900107 DOI: 10.1111/cea.70003] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/12/2024] [Revised: 01/17/2025] [Accepted: 01/22/2025] [Indexed: 02/05/2025]
Abstract
INTRODUCTION Eczema significantly affects the quality of life of affected children and their families, with psychological stress often overlooked. Acceptance and Commitment Therapy (ACT) provides a supplementary approach to address these psychological challenges and enhance overall care. OBJECTIVE This pilot randomised controlled trial aimed to examine the feasibility, acceptability and preliminary effectiveness of the Family ACT-based Eczema Management Program (FACT-EMP). METHODS Parents and children aged 6-12 diagnosed with eczema from three outpatient clinics in Hong Kong were randomly assigned to either the FACT-EMP group, receiving four weekly ACT-based sessions plus eczema management education, or a waitlist control group receiving routine care. Feasibility and acceptability were assessed through recruitment, retention and completion rates, supplemented by focus group feedback on parental experiences. Primary clinical outcomes were children's eczema Severity Scoring of Atopic Dermatitis (SCORAD) and parental self-efficacy. Secondary outcomes included parental distress, quality of life, psychological flexibility and self-compassion of both parents and children. RESULTS From July 2021 to June 2023, 181 of 944 screened parent-child dyads met the inclusion criteria, and 78 were randomised and analysed (parents' mean [SD] age, 41.3 [11.0] years; 70 mothers [89.7%]; children's mean [SD] age, 8.3 [1.9] years; 53 boys [67.9%]). Recruitment, retention and completion rates were 43.1%, 87.2% and 76.9%, respectively. No significant between-group differences in SCORAD scores were observed immediately post-intervention. At 3-month post-intervention, SCORAD scores decreased significantly more in the FACT-EMP group than in the waitlist control group (adjusted mean difference, aMD, -7.73; 95% CI, -13.92 to -1.54). Parental self-efficacy scores also improved significantly more in the FACT-EMP group than the control, with an aMD of 18.69 (95% CI, 13.80 to 33.58) immediately post-intervention and 28.90 (95% CI, 13.93 to 43.84) at 3 months. CONCLUSION FACT-EMP is potentially feasible, acceptable and effective in improving children's eczema symptoms and enhancing parents' self-efficacy in disease management over 3 months. TRIAL REGISTRATION NCT04919330.
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Affiliation(s)
- Yuen Yu Chong
- The Nethersole School of Nursing, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong SAR, China
| | - Wai Tong Chien
- The Nethersole School of Nursing, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong SAR, China
| | - Huan Yu Mou
- The Nethersole School of Nursing, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong SAR, China
| | - Sui Ping Leung
- Department of Paediatrics and Adolescent Medicine, Tuen Mun Hospital, Hong Kong SAR, China
| | - Oi Yin Wong
- Department of Paediatrics and Adolescent Medicine, Tuen Mun Hospital, Hong Kong SAR, China
| | - Shu Yan Lam
- Department of Paediatrics and Adolescent Medicine, Tuen Mun Hospital, Hong Kong SAR, China
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Leadbitter K, Harrison L, Langhorne S, Ellis C, Smallman R, Pearson A, Hackett L, Kroll L, Dunkerley A, Beach H, Gilbert J, van Gils A, Hutton T, Green J, Bee P, the REACH-ASD Team. The development, feasibility and acceptability of Empower-Autism: A new psychoeducational and psychotherapeutic programme for caregivers of children recently diagnosed with autism. AUTISM : THE INTERNATIONAL JOURNAL OF RESEARCH AND PRACTICE 2025; 29:367-381. [PMID: 39291754 PMCID: PMC11816477 DOI: 10.1177/13623613241274566] [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: 09/19/2024]
Abstract
LAY ABSTRACT What is already known about the topic?Parents and carers face many challenges following their child's autism diagnosis. They often look for information, and social and emotional support. There has been relatively little research into how best to provide this support and this means that there is no evidence to guide the delivery of services. Studies have suggested that an approach called Acceptance and Commitment Therapy can help parents and carers with their adjustment and emotional wellbeing.What does this article add?This article describes the development of a new group-based programme to address the diverse needs of caregivers after their child's autism diagnosis. The new programme was developed with caregivers, autistic people and professionals. It was called Empower-Autism and contained lots of information about autism and strategies to support autistic children, alongside therapeutic aspects based on Acceptance and Commitment Therapy. The programme was delivered to 29 parents/carers in three groups. Attendance at the groups was satisfactory. Both parents/carers and facilitators liked and valued the programme and found it accessible. They made suggestions for improvements. After the programme, parents and carers described improved wellbeing. They felt more positive and more connected to other people. They also described parenting their child in a more informed and sensitive way.Implications for practice, research or policyThe new programme is being tested within a large clinical trial. If there are positive results, the programme could be recommended for delivery and this would address an important gap in evidence-based practice.
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Affiliation(s)
| | | | | | | | | | | | | | - Leo Kroll
- Pennine Care NHS Foundation Trust, UK
| | | | | | | | | | | | - Jonathan Green
- The University of Manchester, UK
- Manchester University NHS Foundation Trust, UK
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Lu JH, Wei H, Zhang Y, Fei F, Huang HY, Dong QJ, Chen J, Ao DQ, Chen L, Li TY, Li Y, Dai Y. Effects of remote support courses on parental mental health and child development in autism: A randomized controlled trial. World J Psychiatry 2024; 14:1892-1904. [PMID: 39704371 PMCID: PMC11622010 DOI: 10.5498/wjp.v14.i12.1892] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/28/2024] [Revised: 09/22/2024] [Accepted: 10/11/2024] [Indexed: 11/27/2024] Open
Abstract
BACKGROUND Sustaining the mental health of autistic children's parents can be demanding. AIM To determine the effect of remote support courses on the mental health of parents and the development of autistic children. METHODS Parents of 140 autistic children were randomly assigned to two groups receiving a 2-week intervention: The control group received caregiver-mediated intervention (CMI); the experimental group received CMI with remote family psychological support courses (R-FPSC). The Parenting Stress Index-Short Form, Parenting Sense of Competence Scale, Generalized Anxiety Disorder-7, and Patient Health Questionnaire-9 were used to measure parents' mental health. The Childhood Autism Rating Scale and Gesell Developmental Schedules were used to evaluate children's development. RESULTS Improved parenting stress, sense of competence, depression, and anxiety were found in both groups, but improvements in parenting stress (81.10 ± 19.76 vs 92.10 ± 19.26, P < 0.01) and sense of competence (68.83 ± 11.23 vs 63.91 ± 10.86, P < 0.01) were greater in the experimental group, although the experimental group showed no significant reduction in depression or anxiety. Children's development did not differ significantly between the groups at follow-up; however, experimental group parents exhibited a short-term increase in training enthusiasm (12.78 ± 3.16 vs 11.57 ± 3.15, P < 0.05). CONCLUSION Integrating R-FPSC with CMI may be effective in reducing parenting stress, enhancing parents' sense of competence, and increasing parents' training enthusiasm.
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Affiliation(s)
- Jia-Hui Lu
- Growth, Development and Mental Health Center of Children and Adolescents, Children’s Hospital of Chongqing Medical University, Chongqing Key Laboratory of Child Neurodevelopment and Cognitive Disorders, National Clinical Research Center for Child Health and Disorders, Ministry of Education Key Laboratory of Child Development and Disorders, Chongqing 401146, China
| | - Hua Wei
- Growth, Development and Mental Health Center of Children and Adolescents, Children’s Hospital of Chongqing Medical University, Chongqing Key Laboratory of Child Neurodevelopment and Cognitive Disorders, National Clinical Research Center for Child Health and Disorders, Ministry of Education Key Laboratory of Child Development and Disorders, Chongqing 401146, China
| | - Yu Zhang
- Growth, Development and Mental Health Center of Children and Adolescents, Children’s Hospital of Chongqing Medical University, Chongqing Key Laboratory of Child Neurodevelopment and Cognitive Disorders, National Clinical Research Center for Child Health and Disorders, Ministry of Education Key Laboratory of Child Development and Disorders, Chongqing 401146, China
| | - Fan Fei
- Growth, Development and Mental Health Center of Children and Adolescents, Children’s Hospital of Chongqing Medical University, Chongqing Key Laboratory of Child Neurodevelopment and Cognitive Disorders, National Clinical Research Center for Child Health and Disorders, Ministry of Education Key Laboratory of Child Development and Disorders, Chongqing 401146, China
| | - Hai-Yan Huang
- Growth, Development and Mental Health Center of Children and Adolescents, Children’s Hospital of Chongqing Medical University, Chongqing Key Laboratory of Child Neurodevelopment and Cognitive Disorders, National Clinical Research Center for Child Health and Disorders, Ministry of Education Key Laboratory of Child Development and Disorders, Chongqing 401146, China
| | - Qiu-Jun Dong
- Growth, Development and Mental Health Center of Children and Adolescents, Children’s Hospital of Chongqing Medical University, Chongqing Key Laboratory of Child Neurodevelopment and Cognitive Disorders, National Clinical Research Center for Child Health and Disorders, Ministry of Education Key Laboratory of Child Development and Disorders, Chongqing 401146, China
| | - Jing Chen
- Growth, Development and Mental Health Center of Children and Adolescents, Children’s Hospital of Chongqing Medical University, Chongqing Key Laboratory of Child Neurodevelopment and Cognitive Disorders, National Clinical Research Center for Child Health and Disorders, Ministry of Education Key Laboratory of Child Development and Disorders, Chongqing 401146, China
| | - Dong-Qin Ao
- Growth, Development and Mental Health Center of Children and Adolescents, Children’s Hospital of Chongqing Medical University, Chongqing Key Laboratory of Child Neurodevelopment and Cognitive Disorders, National Clinical Research Center for Child Health and Disorders, Ministry of Education Key Laboratory of Child Development and Disorders, Chongqing 401146, China
| | - Li Chen
- Growth, Development and Mental Health Center of Children and Adolescents, Children’s Hospital of Chongqing Medical University, Chongqing Key Laboratory of Child Neurodevelopment and Cognitive Disorders, National Clinical Research Center for Child Health and Disorders, Ministry of Education Key Laboratory of Child Development and Disorders, Chongqing 401146, China
| | - Ting-Yu Li
- Growth, Development and Mental Health Center of Children and Adolescents, Children’s Hospital of Chongqing Medical University, Chongqing Key Laboratory of Child Neurodevelopment and Cognitive Disorders, National Clinical Research Center for Child Health and Disorders, Ministry of Education Key Laboratory of Child Development and Disorders, Chongqing 401146, China
| | - Yan Li
- Growth, Development and Mental Health Center of Children and Adolescents, Children’s Hospital of Chongqing Medical University, Chongqing Key Laboratory of Child Neurodevelopment and Cognitive Disorders, National Clinical Research Center for Child Health and Disorders, Ministry of Education Key Laboratory of Child Development and Disorders, Chongqing 401146, China
| | - Ying Dai
- Growth, Development and Mental Health Center of Children and Adolescents, Children’s Hospital of Chongqing Medical University, Chongqing Key Laboratory of Child Neurodevelopment and Cognitive Disorders, National Clinical Research Center for Child Health and Disorders, Ministry of Education Key Laboratory of Child Development and Disorders, Chongqing 401146, China
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Mo S, Bu F, Bao S, Yu Z. Comparison of effects of interventions to promote the mental health of parents of children with autism: A systematic review and network meta-analysis. Clin Psychol Rev 2024; 114:102508. [PMID: 39489145 DOI: 10.1016/j.cpr.2024.102508] [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: 11/20/2023] [Revised: 09/02/2024] [Accepted: 10/23/2024] [Indexed: 11/05/2024]
Abstract
Individuals diagnosed with autism spectrum disorders often face persistent challenges in social interaction and engage in repetitive and stereotyped behaviors. Parenting a child with autism can profoundly affect parents both physically and psychologically, potentially leading to negative impacts on their mental health. This study employs a network meta-analysis methodology to evaluate the comparative effectiveness of mental health interventions specifically designed for parents of autistic children. A total of 69 empirical intervention studies involving 4213 parents of autistic children were included in the analysis. Employing the frequency framework model and utilizing Stata 16.0 software, we quantitatively analyzed the impact of various interventions on anxiety, depression, parenting stress, and parenting self-efficacy. Our findings indicate that mindfulness-based interventions demonstrate the highest efficacy in reducing parenting stress, while cognitive behavioral therapy is effective in alleviating anxiety and depression in parents of children with autism. Psychoeducational interventions have shown significant benefits in mitigating parental anxiety, depression, and parenting stress, and acceptance and commitment (ACT) displays promising outcomes in reducing depression. We also elaborate on the underlying mechanisms that contribute to the effectiveness of these interventions. This network meta-analysis presents valuable insights for the development of targeted interventions to provide support to parents of children with autism.
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Affiliation(s)
- Shuliang Mo
- School of Psychology, Central China Normal University, China; Key Laboratory of Adolescent Cyberpsychology and Behavior (CCNU) of Ministry of Education, China.
| | - Fan Bu
- School of Psychology, Central China Normal University, China.
| | - Shujuan Bao
- School of Psychology, Central China Normal University, China.
| | - Zhou Yu
- School of Psychology, Central China Normal University, China
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Li SN, Chien WT, Lam SKK, Chong YY, Gloster AT. Psychometric Properties of the Chinese Version of the Psy-Flex Among Parents of Children with Autism Spectrum Disorder. J Autism Dev Disord 2024:10.1007/s10803-024-06610-0. [PMID: 39463213 DOI: 10.1007/s10803-024-06610-0] [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: 10/10/2024] [Indexed: 10/29/2024]
Abstract
This research aimed to translate the original English version of the Psy-Flex, a scale of psychological flexibility, into Chinese and to test its psychometric properties among parents of children with autism spectrum disorder (ASD). Two phases were conducted: (1) translation from English to Chinese (Psy-Flex-C), followed by a semantic equivalence evaluation between two versions, a pre-test, and an evaluation of the Psy-Flex-C in terms of face validity with 20 parents of autistic children, and content validity of the Psy-Flex-C with eight experts. (2) A cross-sectional study with 248 parents of autistic children was conducted for validation, and a subgroup of 50 participants was randomly selected to assess the test-retest reliability at a 2-week interval. The Psy-Flex-C showed satisfactory semantic equivalence with the original version and demonstrated adequate internal consistency (Cronbach's α = 0.84) and test-retest stability (weighted kappa statistic = 0.88). Concurrent validity was supported by a moderate correlation between the Psy-Flex-C and the Comprehensive Assessment of Acceptance and Commitment Therapy Processes (Pearson's r = 0.54, p < 0.01). The Psy-Flex-C showed a significant mean score difference between parents with high and low parenting stress (t = 5.43, p < 0.001). Similar to the original scale, confirmatory factor analysis showed the best fitting one-factor structure of the Psy-Flex-C (X2/df = 1.62, p = 0.13, RMSEA = 0.05, GFI = 0.99, CFI = 0.99, TLI = 0.98, SRMR = 0.023). The Psy-Flex-C can be a reliable and valid instrument to self-report psychological flexibility in parents of children with ASD. Future research is recommended to test the Psy-Flex-C using diverse samples from different cultures and contexts to enhance its generalizability.
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Affiliation(s)
- Si Ni Li
- The Nethersole School of Nursing, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong, China
| | - Wai Tong Chien
- The Nethersole School of Nursing, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong, China.
| | - Stanley Kam Ki Lam
- The Nethersole School of Nursing, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong, China
| | - Yuen Yu Chong
- The Nethersole School of Nursing, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong, China
| | - Andrew T Gloster
- Division of Clinical Psychology & Intervention Science, Department of Psychology, University of Basel, Missionsstrasse 62-64, 4055, Basel, Switzerland
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Li S, Yong Y, Li Y, Li J, Xie J. Cognitive-Based Interventions for Improving Psychological Health and Well-Being for Parents of Children with Developmental Disabilities: A Systematic Review and Meta-analysis. J Autism Dev Disord 2024; 54:3316-3335. [PMID: 37668850 PMCID: PMC11362495 DOI: 10.1007/s10803-023-06063-x] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 07/06/2023] [Indexed: 09/06/2023]
Abstract
This review aims to systematically summarize existing evidence to determine the effectiveness of cognitive-based interventions (CBIs) on psychological health and well-being among parents of children with developmental disabilities (DD). Six databases were searched to identify eligible randomized controlled trials (RCTs) from their inception to April 2023. The revised Cochrane Risk of Bias tool for RCTs was applied to assess the risk of bias and the certainty of evidence was evaluated using the Grading of Recommendation, Assessment, Development and Evaluation. Meta-analyses were conducted using a random-effects model. Twenty-five RCTs involving 1915 participants were identified. The results indicated that CBIs reduced parental stress levels (Hedges' g = - 0.69), depressive symptoms (g = - 0.95), anxiety levels (g = - 0.78), and parental distress (g = - 0.29), and improved parental well-being (g = 0.62) and parent‒child relationships (g = 0.43) postintervention compared with the active/inactive control groups. Subgroup analysis of the effectiveness of interventions using mindfulness-based interventions and cognitive behavioural therapy showed positive effects. The favourable intervention duration and participant targets were also identified in this review. Furthermore, the effects of CBIs were impacted by the different types of DD among the children. This review highlighted the positive effects of CBIs on parental stress levels, depressive symptoms, anxiety levels, parental distress levels, parental well-being levels, and parent‒child relationships. Future well-designed RCTs are needed to further investigate the effects of MBIs and CBT interventions on children with DD and their parents, as well as the factors and mechanisms of action affecting the efficacy of these interventions.
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Affiliation(s)
- Sini Li
- The Nethersole School of Nursing, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong, China
- Clinical Nursing Teaching and Research Section, The Second Xiangya Hospital, Central South University, 139 Renmin Middle Road, Changsha, 410011, China
| | - Yijing Yong
- Cognition and Human Behaviour Key Laboratory of Hunan Province, Hunan Normal University, Changsha, China
| | - Yamin Li
- Clinical Nursing Teaching and Research Section, The Second Xiangya Hospital, Central South University, 139 Renmin Middle Road, Changsha, 410011, China
| | - Jianhe Li
- Department of Pharmacy, The Second Xiangya Hospital, Central South University, 139 Renmin Middle Road, Changsha, 410011, China.
| | - Jiao Xie
- Clinical Nursing Teaching and Research Section, The Second Xiangya Hospital, Central South University, 139 Renmin Middle Road, Changsha, 410011, China.
- Department of Otolaryngology-Head and Neck Surgery, The Second Xiangya Hospital, Central South University, 139 Renmin Middle Road, Changsha, 410011, Hunan, China.
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Yang L, Ye J, Zhu H, Tang Y, Li X. Development and evaluation of a family-child reading picture book on reducing autism spectrum disorder caregivers' psychological stress: a mixed method study. Front Psychiatry 2024; 15:1390430. [PMID: 38863613 PMCID: PMC11165404 DOI: 10.3389/fpsyt.2024.1390430] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 02/26/2024] [Accepted: 04/22/2024] [Indexed: 06/13/2024] Open
Abstract
Introduction The rapid increasing prevalence of ASD has become a significant global health issue. Caregivers of children with ASD are experiencing higher level of psychological stress and mental disorders. However, interventions to improve the psychological health of caregivers of children with ASD have largely been neglected. Methods Based on the ADDIE (Analysis, Design, Development, Implementation, and Evaluation) model, we initially did in-depth interviews with 8 caregivers, and conducted field observation in two rehabilitation centers to analyze the daily lives, the empowered components, the emotional moments of the children with autism and their caregivers. Then we designed the outline of the picture book, and developed it by a multi-disciplinary team by 4 rounds. After that, this picture book was sent out to 54 caregivers of children with ASD for family-child reading in one month. A quantitative questionnaire was administered before and after their reading to evaluate the efficacy of reducing their stress and affiliate stigma, and improving self-efficacy, resilience, empowerment capacity; and exit interviews were conducted after their initial reading to assess the acceptability, content appropriateness, perceived benefits and generalizability of this picture book. Quantitative data were analyzed by descriptive analysis and paired t-tests using IBM SPSS 26.0. Qualitative data were analyzed using template analysis. Results In total, 54 caregivers read the picture book with their child, with the total of 149 (an average of 2.76 per family) times reading in one month. Among them, 39 caregivers returned the following-up questionnaires. Although most of the outcome measures did not showed significant changes except the stress level decreased statistically significant (13.38 ± 3.864 to 11.79 ± 3.238, P=0.001), caregivers reported that the picture book echoed their daily lives and gave them a sense of warmth, inspiration, and hope, as well as some insight on family relationships and attitudes towards the disorder. They also expressed a willingness to disseminate the book to other families with children suffering ASD and the public. Conclusion This specially designed picture book has been proven to be an acceptable, content-appropriate, and effective family-centered psychological intervention, which could be easily scaled up.
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Affiliation(s)
- Lei Yang
- Xiangya School of Nursing, Central South University, Changsha, Hunan, China
| | - Jinlin Ye
- Xiangya School of Nursing, Central South University, Changsha, Hunan, China
| | - Hongrui Zhu
- School of International Nursing, Hainan Medical University, Haikou, Hainan, China
| | - Yao Tang
- Xiangya School of Nursing, Central South University, Changsha, Hunan, China
| | - Xianhong Li
- Xiangya School of Nursing, Central South University, Changsha, Hunan, China
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Ye F, Lee JJ, Xue D, Yu DSF. Acceptance and Commitment Therapy Among Informal Caregivers of People With Chronic Health Conditions: A Systematic Review and Meta-Analysis. JAMA Netw Open 2023; 6:e2346216. [PMID: 38051530 PMCID: PMC10698615 DOI: 10.1001/jamanetworkopen.2023.46216] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/24/2023] [Accepted: 10/24/2023] [Indexed: 12/07/2023] Open
Abstract
Importance Although there is substantial evidence to suggest the health benefits of acceptance and commitment therapy (ACT) among informal caregivers of people with chronic health conditions, the great variation in intervention designs among published studies limits its application. Objectives To identify intervention characteristics of ACT that are associated with improved psychological health and to assess the acceptability of ACT among informal caregivers. Data Sources Seven English- and 3 Chinese-language databases without limits on publication dates, the reference lists of previous reviews, and gray literature were searched up to February 2023. Study Selection Randomized clinical trials comparing the effect of ACT vs control groups on improving psychological health among informal caregivers. Data Extraction and Synthesis Two reviewers independently screened searched records and extracted data from eligible studies. Random-effects meta-analysis and mixed-effects metaregression were performed. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses guideline was followed. Main Outcomes and Measures Psychological health outcomes (eg, depressive symptoms) measured by valid measurements and the acceptability of ACT based on identified parameters. Results A total of 29 studies with 2010 participants, published between 2015 and 2023, were identified. ACT showed moderate to large effect sizes for improving psychological health at postintervention assessments (Hedges g range, -0.55 [95% CI, -0.98 to -0.12] to -1.14 [95% CI, -1.83 to -0.45]) and at 1-to-3-month and 4-to-6-month follow-ups (Hedges g range, -0.47 [95% CI, -0.69 to -0.25] to -1.29 [95% CI, -2.33 to -0.24]). Multivariable metaregression analysis regarding intervention characteristics found that ACT delivered in a mixed individual- and group-based format, face-to-face, or through more intervention sessions was associated with greater improvements for experiential avoidance (face-to-face: β = -1.170 [95% CI, -2.020 to -0.319]; number of sessions: β = -0.242 [95% CI, -0.353 to -0.130]), depressive symptoms (mixed delivery format: β = -2.583 [95% CI, -4.845 to -0.321]; face-to-face: β = -1.555 [95% CI, -3.002 to -0.108]), or anxiety symptoms (face-to-face: β = -1.241 [95% CI, -2.337 to -0.146]). In general, ACT had low attrition rates (11%), and participants' adherence (51%-80%) and satisfactory ratings (72%-95%) lend support to its acceptability. Conclusions and Relevance This systematic review and meta-analysis found that ACT was consistently associated with improvements in psychological health, supporting its application to improve informal care for chronic disease management. This review provides specific details on the design parameters of ACT for achieving greater efficacy.
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Affiliation(s)
- Fen Ye
- School of Nursing, LKS Faculty of Medicine, The University of Hong Kong, Hong Kong, China
| | - Jung Jae Lee
- School of Nursing, LKS Faculty of Medicine, The University of Hong Kong, Hong Kong, China
| | - Dandan Xue
- School of Nursing, LKS Faculty of Medicine, The University of Hong Kong, Hong Kong, China
| | - Doris Sau-fung Yu
- School of Nursing, LKS Faculty of Medicine, The University of Hong Kong, Hong Kong, China
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Gur A, Reich A. Psychological flexibility of parents of children with disabilities: A systematic literature review. RESEARCH IN DEVELOPMENTAL DISABILITIES 2023; 136:104490. [PMID: 36966545 DOI: 10.1016/j.ridd.2023.104490] [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: 05/16/2022] [Revised: 02/27/2023] [Accepted: 03/10/2023] [Indexed: 06/18/2023]
Abstract
PURPOSE Psychological flexibility, a popular concept in clinical psychology, is still evolving in the context of studying parents of children with disabilities. This study systematically reviewed the literature on the psychological flexibility of parents of children with disabilities to identify contributions of the literature and make recommendations for practice and future study. MATERIALS AND METHODS The systematic review was conducted according to the PRISMA guidelines and identified studies on the psychological flexibility of parents of children with disabilities using five electronic databases: PsychNet, PubMed, ERIC, Social Services Abstracts, and EBSCO. Twenty-six articles met the criteria and were included. A thematic analysis was conducted to extract major themes. RESULTS Three major themes emerged from the data: (1) psychological flexibility is associated with various aspects of mental health; (2) psychological flexibility is associated with parental functioning in caring for children with a disability; (3) acceptance and commitment therapy (ACT) based interventions effectively enhance the psychological flexibility of parents of children with disabilities. CONCLUSIONS The study concludes that psychological flexibility is extremely relevant to disability studies and should be further explored in relation to different parental well-being and functioning aspects. Professionals are encouraged to incorporate principles of acceptance and commitment therapy into their work with parents of children with disabilities.
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Affiliation(s)
- Ayelet Gur
- Social Work Department, Tel-Hai College, Upper Galilee, Israel.
| | - Ari Reich
- Faculty of Education, Bar Ilan University, Ramat Gan, Israel
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Sasaki N, Imamura K, Nishi D, Watanabe K, Asaoka H, Sekiya Y, Tsuno K, Kobayashi Y, Obikane E, Kawakami N. The effect of internet-based acceptance and commitment therapy (iACT) on psychological well-being among working women with a pre-school child: A randomized controlled trial. JOURNAL OF CONTEXTUAL BEHAVIORAL SCIENCE 2023. [DOI: 10.1016/j.jcbs.2023.03.002] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 03/07/2023]
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Cultural adaptation of ACT to support caregivers of autistic Latino children: A pilot study. JOURNAL OF CONTEXTUAL BEHAVIORAL SCIENCE 2023. [DOI: 10.1016/j.jcbs.2023.03.003] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 03/07/2023]
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Advances in Autism Research: Series II. Brain Sci 2023; 13:brainsci13020332. [PMID: 36831875 PMCID: PMC9954114 DOI: 10.3390/brainsci13020332] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/06/2023] [Accepted: 02/10/2023] [Indexed: 02/17/2023] Open
Abstract
"Advances in Autism Research: Series II" is a continuation of the important Special Issue (SI) published in 2020 that collected 50 articles [...].
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Leadbitter K, Smallman R, James K, Shields G, Ellis C, Langhorne S, Harrison L, Hackett L, Dunkerley A, Kroll L, Davies L, Emsley R, Bee P, Green J. REACH-ASD: a UK randomised controlled trial of a new post-diagnostic psycho-education and acceptance and commitment therapy programme against treatment-as-usual for improving the mental health and adjustment of caregivers of children recently diagnosed with autism spectrum disorder. Trials 2022; 23:585. [PMID: 35869533 PMCID: PMC9306249 DOI: 10.1186/s13063-022-06524-1] [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: 04/07/2022] [Accepted: 07/06/2022] [Indexed: 11/10/2022] Open
Abstract
BACKGROUND Autism is a neurodevelopmental disability affecting over 1% of UK children. The period following a child's autism diagnosis can present real challenges in adaptation for families. Twenty to 50% of caregivers show clinically significant levels of mental health need within the post-diagnostic period and on an ongoing basis. Best practice guidelines recommend timely post-diagnostic family support. Current provision is patchy, largely unevidenced, and a source of dissatisfaction for both families and professionals. There is a pressing need for an evidenced programme of post-diagnostic support focusing on caregiver mental health and adjustment, alongside autism psycho-education. This trial tests the clinical and cost-effectiveness of a new brief manualised psychosocial intervention designed to address this gap. METHODS This is a multi-centre two-parallel-group single (researcher)-blinded randomised controlled trial of the Empower-Autism programme plus treatment-as-usual versus usual local post-diagnostic offer plus treatment-as-usual. Caregivers of children aged 2-15 years with a recent autism diagnosis will be recruited from North West England NHS or local authority centres. Randomisation is individually by child, with one "index" caregiver per child, stratified by centre, using 2:1 randomisation ratio to assist recruitment and timely intervention. Empower-Autism is a group-based, manualised, post-diagnostic programme that combines autism psycho-education and psychotherapeutic components based on Acceptance and Commitment Therapy to support caregiver mental health, stress management and adjustment to their child's diagnosis. The comparator is any usual local group-based post-diagnostic psycho-education offer. Receipt of services will be specified through health economic data. PRIMARY OUTCOME caregiver mental health (General Health Questionnaire-30) at 52-week follow-up. SECONDARY OUTCOMES key caregiver measures (wellbeing, self-efficacy, adjustment, autism knowledge) at 12-, 26- and 52-week follow-up and family and child outcomes (wellbeing and functioning) at 52-week endpoint. SAMPLE N=380 (approximately 253 intervention/127 treatment-as-usual). Primary analysis will follow intention-to-treat principles using linear mixed models with random intercepts for group membership and repeated measures. Cost-effectiveness acceptability analyses will be over 52 weeks, with decision modelling to extrapolate to longer time periods. DISCUSSION If effective, this new approach will fill a key gap in the provision of evidence-based care pathways for autistic children and their families. TRIAL REGISTRATION ISRCTN 45412843 . Prospectively registered on 11 September 2019.
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Affiliation(s)
- Kathy Leadbitter
- Division of Neuroscience and Experimental Psychology, University of Manchester, Manchester, UK.
| | - Richard Smallman
- Division of Neuroscience and Experimental Psychology, University of Manchester, Manchester, UK
| | - Kirsty James
- Department of Biostatistics and Health Informatics, Institute of Psychiatry, Psychology and Neuroscience, Kings College London, London, UK
| | - Gemma Shields
- Division of Neuroscience and Experimental Psychology, University of Manchester, Manchester, UK
| | - Ceri Ellis
- Division of Neuroscience and Experimental Psychology, University of Manchester, Manchester, UK
| | - Sophie Langhorne
- Division of Neuroscience and Experimental Psychology, University of Manchester, Manchester, UK
| | - Louisa Harrison
- Division of Neuroscience and Experimental Psychology, University of Manchester, Manchester, UK
| | - Latha Hackett
- Manchester University NHS Foundation Trust, Manchester, UK
| | | | - Leo Kroll
- Pennine Care NHS Foundation Trust, Ashton-under-Lyne, UK
| | - Linda Davies
- Division of Neuroscience and Experimental Psychology, University of Manchester, Manchester, UK
| | - Richard Emsley
- Department of Biostatistics and Health Informatics, Institute of Psychiatry, Psychology and Neuroscience, Kings College London, London, UK
| | - Penny Bee
- Division of Neuroscience and Experimental Psychology, University of Manchester, Manchester, UK
| | - Jonathan Green
- Division of Neuroscience and Experimental Psychology, University of Manchester, Manchester, UK
- Manchester University NHS Foundation Trust, Manchester, UK
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